The hopes and dreams you have for your child can be significantly disrupted when challenges or difficulties in his or her development emerge. When Autism Spectrum Disorder (ASD) is suspected or confirmed, parents and families may have to learn new ways to foster their child’s health and happiness. They may also feel overwhelmed and wonder what’s next.
At Holland Bloorview Kids Rehabilitation Hospital, we want to support parents and families of children and youth with ASD.
Listen to ASD Engage to hear from psychologist Dr. Heidi Kiefer and psychometrists Shawn Brumby and Maureen Mosleh as they help move beyond the cold facts and details of Autism Spectrum Disorder (ASD). Through the series, the team engages with professionals, families and children that make the ASD journey come to life. Podcast episodes give access to specialists who provide assessment and treatment, and also connects with parents and caregivers at different points in their ASD journey, who open up about the thoughts and feelings that accompany raising a child with ASD and practical tips to take away and try.
Dr. Heidi [00:00:11] Welcome to ASDengage the podcast for families of children who are currently waiting for an autism spectrum disorder or ASD assessment. I'm Dr. Heidi Keifer, a clinical child and adolescent psychologist.
Maureen [00:00:24] I'm Maureen Mosleh, a psychometrist.
Shawn [00:00:27] And I'm Shawn Brumby, also a psychometrist. We work on teams that assess children for ASD at Holland Bloorview Kids Rehabilitation Hospital. Each episode, we will present a topic that reflects concerns brought forward by families we work with.
Maureen [00:00:43] You'll hear information regarding the assessment process and insights and information from a variety of specialists. And more importantly, we'll talk directly to families who share some of their personal stories with us in an effort to help guide you through the assessment process.
Dr. Heidi [00:01:01] Welcome to Episode one of ASTM Engage in this episode, we're going to introduce you to Adrienne. Adrienne has two daughters. Her youngest, Amira, was diagnosed with ASD seven years ago. We wanted to start with a chat with Adrienne because she's like so many parents who've gone on a journey with a child, with ASD or maybe about to. We think hearing her story can help us dive into more than just the facts and details of assessment and diagnosis of ASD, but the actual experience that a parent and child has. It begins with Adrienne briefly telling us about how she became involved with Holland Bloorview. But after that, the discussion turns to Amira's assessment, the wait and the actual diagnosis.
Shawn [00:01:47] So, Adrienne, tell us about your involvement with Holland Bloorview.
Adrienne [00:01:50] Wonderful. So my both my kids actually received services here and have for a while and kind of the minute we walked in the building and kind of felt that sense of ease in feeling like we were with people who understood us and understood the girls. We wanted to be a bit more connected. I wanted to be a bit more connected. I realized there was this autism research center that I had heard a little bit about and knew there were some amazing professionals working in, but didn't know quite how to get myself in there to learn more about what was going on. So we became research participants so that we could kind of learn more about what the research department was doing, learn more about our own kids, and kind of become more aligned with things going on at Holland Bloorview, because after speaking to other families, we realized that there was a lot of really good work being done here and a lot of innovation being done here. And I just wanted to be a part of it.
Dr. Heidi [00:02:47] That's amazing. So, Adrienne, you pointed out that you have two daughters, focusing on the daughter who's been diagnosed with ASD, I want to find out before she was assessed was ASD on your radar?
Adrienne [00:03:01] No, no, no. Well, I shouldn't say that. It wasn't before we started talking to the pediatrician who ended up diagnosing her. The process of diagnosing her took a number of visits. And when we first saw her and she observed my daughter Amira, and we had a long chat and we were in the office for, I would say, two hours. And at the end of that conversation, she posed the idea that we will need to query autism. And so that was the first time I had ever heard the words.
Dr. Heidi [00:03:40] First time.
Adrienne [00:03:40] The very first time. And that was scary. And then at that point, I started thinking, connecting the dots and things started to make more sense. But prior to that, no, we'd thrown around is she deaf, you know, that, to be honest, was the only only specific thing that we could come up with because of her lack of attention to her name. So, yeah, before that meeting with the pediatrician, no.
Dr. Heidi [00:04:08] It wasn't on your radar at all. Can you tell us about going for that assessment? What were you expecting and how are you feeling?
Adrienne [00:04:19] But to be honest, that assessment I was excited about because her case was one of those that was subtle and she was and she was young. So I heard many, many times, oh, well, she's only two, you know. It's you know, it's hard to figure these things out in kids so little is what I was what I was told when we were in our primary care setting. But I knew in my gut something was different. She was our second child. So I appreciated the fact that, yes, kids are different. But she just seemed more different than I expected. And that and other people around us were noticing little things and cocking their head and going, you know, different. And so I had to push quite hard to get the referral from our primary care to the pediatrician, because even the primary care physician wasn't so sure that the referral to the pediatrician was necessary. So I was actually kind of excited to get to that pediatrician thinking like, OK, now, you know, hopefully we're working with someone who is really going to dig into the subtleties of things. That changed when I hear the word autism. But initially, I was just happy to get to someone who was going to kind of get into the nitty gritty.
Dr. Heidi [00:05:32] Right. Yeah. So you said like that, so it changed the excitement. What did it change?
Adrienne [00:05:39] To fear and feeling overwhelmed, when I heard the word autism. Mostly fear initially, because what I knew of autism, which was little to none, and what I knew of my daughter didn't seem to correlate. And so I thought, well, I know how, what...and it was just a scary proposition, to think that what I knew of autism and what I knew of my daughter would be correlated.
Dr. Heidi [00:06:11] Yeah. You mentioned so in your gut you said you felt that there were differences. What were you noticing?
Adrienne [00:06:20] She was very independent, which I was grateful for, because my kids are 16 months apart. So it was difficult to manage two babies. But she just was was, I think, overly so, overly independent. She didn't always respond to her name, which was pretty clear, in hindsight, and this is only in hindsight, I can remember when she first stood up. I got super excited and I looked into her eyes to see just to, you know, to gesture to her, oh my goodness, and to share that excitement. And I remember distinctly her not making eye contact with me and not being terribly excited about the fact that she'd stood up for the first time, and feeling a little bit disappointed, but thinking to myself, oh, she's different, quote unquote. Yeah. If you... and now that I know the things to look for it, she didn't point when she was a kid; there were a number of things that I can say now but initially it was that, you know, lack of response reliably and just being very independent and very sensitive.
Dr. Heidi [00:07:29] Right. And it's interesting because you're pointing out, like you said, like subtle differences. Right. So that you, as a parent who is with her for a long period of time, might have been noticing, but going to your primary caregiver who's seeing her for like a short period of time might not have noticed.
Adrienne [00:07:44] No.
Dr. Heidi [00:07:44] Yeah. What kind of support did you have while you were, you and your family were waiting for the assessment and then while you were actually going through it?
Adrienne [00:07:53] Mm hmm. While we were waiting for the assessment we were given resources in the form of documents to read, Web sites to go to, books to read. But that was the extent of it. I did my own research and I didn't do much reaching out at that point because we were so confused as to whether this was the direction we were going or not. So there wasn't a whole lot, to be honest. I wish there had been more, but that was it was, you know, some paperwork, and you know, your appointment is in four months. And, you know, that body will be better at teasing out whether this is where she is or not.
Dr. Heidi [00:08:48] It sounds kind of like being in limbo.
Adrienne [00:08:51] Yeah, yeah, absolutely in limbo. Yeah. And it's a difficult thing to manage emotionally because you, it's hard to talk about whether your kid may or may not have autism, because then you have to wrestle with disclosing that to people and whether you're ready to even have that conversation about if they are what that would mean and how that, you know, whoever you're disclosing it to might react to that discussion. So we, my husband and I found that we didn't really talk much about, you know, the concerns and the confusion and the stress that we were having that was associated with does she? Because we thought if we're going to have this conversation with people, we want to be sure. Because it felt like that cat that if you let it out of the box, you can't get it back.
Dr. Heidi [00:09:48] Yeah. Right. In some ways, it kind of makes sense how you and your husband were like this island together.
Adrienne [00:09:54] Yes, very much so. I think there was one other, my very best friend was the only person that I kind of spoke to about the query of autism before we got the diagnosis. And yeah, I just, I think I, I hadn't, it took a long time to accept it and to appreciate it, and so when I first learned of the query, it was definitely not something I could speak about easily with anybody other than my husband and my best friend.
Maureen [00:10:27] How long were you waiting? So that period between we're going to refer you to someone who's going to look into autism and when you had that very first appointment. What was that wait?
Adrienne [00:10:41] It was about, so from my primary care to my pediatrician it was about three months, and then it was another two months until the pediatrician did the diagnosis.
Dr. Heidi [00:11:00] So really like kind of half a year.
Adrienne [00:11:02] Yeah. Yeah. It felt like a long time. And it felt the longest when we knew that autism was a query, because then you start reading and you look at the Web sites and you know, you you you hear about the research associated with ABA. and how much you're supposed to do, and at what intensity, and how if you do it earlier you're more likely to have better results; and so every day feels like you are letting go of opportunity and the guilt associated with if I don't do this now, you know, I may significantly affect her future that weighs heavily on parents. That was, that was, those days were the worst when we knew this may be her fate and feeling as a parent like, I wasn't doing what I was supposed to do to get her what she needed.
Dr. Heidi [00:11:58] Yeah, I can imagine, that would be hard. Adrienne, what do you remember about when you actually heard the words being said that that your daughter was being diagnosed with ASD?
Adrienne [00:12:14] When she was being diagnosed with ASD, I know it sounds really strange, but I was relieved because we'd had a discussion about, you know, it could be ASD, it could be global developmental delay, which was explained to me as a constellation of delays that we don't really understand and don't have really specific treatments for, and that seemed a scarier place to be for us. So, and as I learned that autism may be what she ended up having, you know, I started reading and checking the boxes, and in my mind, it didn't make sense that it would be anything other than ASD once I had read a lot and looked and kind of pieced things together. So at that point, I was very relieved to hear it. When I was first introduced to me I was incredibly scared and upset and sad and angry, and like a myriad of emotions, because it was something I had never thought about before and didn't know I didn't have any personal relation to someone with autism spectrum disorder. So it sounds, I'm embarrassed to say that, you know, the movie Rainman was probably the only reference that I had to autism, which is horrible, but that's the way it was. So back then, it was very overwhelming.
Dr. Heidi [00:13:48] Yeah. Yeah. You really I mean, it really sounds like it was such a mix of emotions. But at the same time that there was some sort of like relief in knowing, right? Versus the unknown.
Adrienne [00:14:01] Absolutely.
Dr. Heidi [00:14:01] Ruling out other things. And and then if it's not easy then what is going on.
Adrienne [00:14:06] Yeah. Yeah, absolutely. And knowing that there, you know, there is somewhat of a path that's been paved. So there are, you know, reasonably well organized treatment protocols that we can look to. And yes, we will have to choose from a myriad of different options. But at least there is is something out there with a label and a treatment associated with it.
Dr. Heidi [00:14:30] Yeah, I always, one of the things that always strikes me is that you get a diagnosis as a parent, and that's not necessarily the end of your journey; in some ways that's the beginning of a whole other journey.
Adrienne [00:14:43] Yeah, it's the very beginning of a very long journey. Yeah.
Dr. Heidi [00:14:46] Yeah. And we're gonna get into that a little bit more. If you were Adrienne, if you were able to go back to that clinician that assessed and diagnosed Amira, your daughter, is there anything that you would want to tell him or her today that might help other families in future assessments?
Adrienne [00:15:11] The woman who did our diagnosis, I think, did a wonderful job because she allowed for the time in her office and she allowed for the time between sessions. We had three sessions with her, three elongated sessions with her. One was the initial evaluation and then the discussion of this is where, this is where I think we're going. The next ended up being the actual diagnosis itself. And then the third at her insistence was my husband and I coming back two weeks after the diagnosis to have a debrief. And I remember her saying very clearly, your husband has to come too, and I'm one of those mommies who just you know, I think I can do it all, and now I know I can't; but I had, you know, initially thought, no, no, he's working, he won't be able to come, he doesn't need to come. She said, no, no, no, he needs to come. And we had a discussion and there were tears, and but I you know, was much, we were much better able to understand what our plans would be at the discussion at the third meeting. So I, I know it's you know, it's expensive to spend that amount of time and it is, you know, intensive, but it's, I think it made the difference in our ability to get going. Instead of be frozen in, like in fear and grief, which there was a lot of fear and grief period, but we weren't frozen in the way that I think we could have if it was a very kind of down and dirty, in and out, here you go, kind of process.
Dr. Heidi [00:16:56] And so there is real value in having your husband come to that session.
Adrienne [00:17:00] Yeah, there was. There was, yeah. There's only so much you can relay after the fact. You being there's there's, you know, being there, there's so such value in that.
Dr. Heidi [00:17:12] Yeah. And what would you tell a parent who's currently waiting for their child to be assessed.
Adrienne [00:17:20] I would say as much as you can and feel comfortable, to read and to become familiar with the with things that you might start to appreciate in your own child, because some things are so subtle, and the question, when you get to the office and you're having the assessment sometimes the questions they ask are questions that you may not have thought to think of or look for, and so if you haven't done that pre work, sometimes the questions can feel that you just you feel badly because you haven't looked for those things. You haven't thought of those things. And sometimes you can come up with the answers. When someone asked me, did she point? I stopped for a moment. Then went oh, goodness, no, she didn't point. But there are other questions where I thought where I knew because I'd been looking for them and either had seen something or not seen something, that I was better able to give information that would be helpful to the diagnosis. So I think just knowing what to look for and kind of being your own detective with your child helps and then it you know, it helps to appreciate that maybe some of the things that are more difficult about the behaviors associated with autism are not necessarily just because your kid is a quote unquote bad kid or a hard kid, or it's part and parcel with a lot of the difficulties that kids have with autism. So tantrums or self injurious behavior, as soon as I started to learn that, that wasn't just because I didn't feed her the right food at the right time it was because you know, she was overloaded with a flood of emotions because of her inability to communicate at that point. There I took some of the pressure off myself to think that I could just change everything or I wasn't parenting properly so that that that was helpful. And that all came was just kind of learning and reading and taking in as much as I could over time.
Shawn [00:19:22] So you just heard a clip taken from a conversation we had with Adrienne in an upcoming episode on receiving an ASD diagnosis. If you'd like to hear more from Adrienne, please join us in Episode three, where she shares more about her experience as a parent of a child with ASD. And she also discusses how her daughter presented when first getting the diagnosis and how her daughter and family are doing now. We hope you continue to join us as we further explore the process of receiving an ASD diagnosis and also the journey that follows.
Dr. Heidi [00:20:00] If you've listened to this episode and have comments or ideas that you'd like to share with us regarding future episodes or what you heard today, feel free to e-mail us at ASDengage@hollandbloorview.ca.
Dr. Heidi [00:00:11] Welcome to ASDengage, the podcast for families of children who are currently waiting for an autism spectrum disorder or ASD assessment. I'm Dr. Heidi Keifer, a clinical child and adolescent psychologist.
Maureen [00:00:24] I'm Maureen Mosleh, a psychometrist.
Shawn [00:00:26] And I'm Shawn Brumby, also a psychometrist. We work on teams that assess children for ASD at Holland Bloorview Kids Rehabilitation Hospital. Each episode we will present a topic that reflects concerns brought forward by families we work with.
Maureen [00:00:43] You'll hear information regarding the assessment process and insights and information from a variety of specialists. And more importantly, we'll talk directly to families who share some of their personal stories with us in an effort to help guide you through the assessment process.
Maureen [00:01:01] Welcome to Episode two of ASDEngage. In this episode, we'll be discussing what parents can do to prepare for an autism assessment. Dr. Heidi, in your experience, why is this topic so important?
Dr. Heidi [00:01:12] I guess because a lot of the times, like parents are coming in and they might know that they're coming for an ASD diagnosis and they might not. So they're coming after being referred from their primary health care provider or doctor or pediatrician, and the information that they have to prepare them can be really variable. So we want to kind of even out that playing field in terms of what parents know and what can parents expect when they're coming for an assessment here at Holland Bloorview or anywhere else.
Maureen [00:01:46] Okay. So in this episode, then we're also going to talk to Dr. Sharon Smile, a developmental pediatrician here at Holland Bloorview. So thanks very much for joining us, Dr. Smile.
Dr. Smile [00:01:58] Thank you. I'm so excited.
Maureen [00:02:00] I'm glad. Alright, so first off, we'd like you to tell us about what you do here at Holland Bloorivew.
Dr. Smile [00:02:04] I have the best job in the world because I get to play with kids and I meet wonderful families, really exceptional parents and kids who challenge me to be better each day. And it's called a developmental pediatrician, which just means a physician who specializes in children and youth who have developmental difficulties, such as a wide range, autism spectrum disorder, cerebral palsy, cognitive impairment, ADHD, and who might just have a difficult time managing their environment.
Maureen [00:02:43] Okay, perfect. Thank you. So I kind of want to jump in a little bit and talk specifically about working with children with autism. Why is this a field that you chose to specialize in?
Dr. Smile [00:02:57] You're going hard, Maureen.
Maureen [00:03:00] That's the point.
Dr. Smile [00:03:01] So I am a pediatrician by training, and I think it all started when I was a resident in Jamaica at a University Hospital in the West Indies and in our child development clinic we would see kids who present with many different developmental concerns, and in our setting we're a resource limited country, and we'll see kids who had difficulty speaking, just functioning, and then they had these additional factors or symptoms such as hand flapping, difficulty with behavior, transition challenges, and in reading up about what could this be, we learned that autism spectrum disorder defined or defined those symptoms beautifully. But the problem is that when we look at intervention and most of the intervention and research around that comes from resource rich countries like North America, the treatment would be behavioral therapies, occupational therapy, speech language therapies. And in Jamaica, we don't have a government system similar to Canada that where kids will have access to those services. So as a student, I'm wondering, OK, what can we do for our communities and our kids here in Jamaica? And I think that was the reason why I decided I need to find a way to understand autism a bit more and try to see if we could come up with clinical care that could be applicable to countries that may not be as resource rich, like in Canada.
Maureen [00:04:33] Parents and kids are used to going to visit with a pediatrician or their doctor, and in those situations, they usually have a sense of what to expect. But for many families, when they're referred for an assessment here at Holland Bloorivew, they may not really have much idea of what that entails. So tell us, what are we talking about when we talk about an ASD assessment?
Dr. Smile [00:04:55] So when we look at autism spectrum disorder assessment, I tend to move away from being very rigid in stepwise process. What we do here at Holland Bloorivew is what's called a developmental assessment. But what I want to do is get to know you, your child and some of the skills that they're really good at doing and things that they're not good at doing. And in walking through with that parent and child through their journey, and we usually start from getting some information from a referring physician, other people who are involved in their care, their teachers, daycare providers, or any other subspecialty that might be involved. Just to get a sense of what has happened before and then when they do, when they come to their apartment, here at Holland Bloorview I walk through from conception to present. And what I try to do is paint a picture of that child's development to see where things were going really, really great, and then when things started becoming problematic, because when we we look at autism spectrum disorder, I haven't found a child who just presents with ASD alone, there's this comorbidity that exists, and what I mean by that, there's other things that are happening with autism spectrum disorder. So there are other medical challenges that occur. There might be cognitive challenges that occur, and so you want to get that holistic picture, so when kids come in we walk through that journey from neonatal period straight on til their current setting, and I try to get a sense of where they're functioning in their main areas, whether or not it's communication skills, what receptive, expressive, looking at non-verbal skills, I look at their social skills, behavioral profile, motor skills, and then what I try to then do is present that case to parents who say this is where they're functioning compared to other kids, their same chronological age. And if there's a deficit then I'm trying to figure out, why is there a deficit? Are there risk factors there that are causing challenges? And if the symptoms match that categorical descriptor that we get in our DSM five diagnostic criteria for autism spectrum disorder then a diagnosis will be given, especially if those impairments impact on function. And the biggest role for kids right now is to have fun in their environment as well as go to school and learn. So if a child is not engaging with a family or having fun or doing successful at school, then that discussion is had with parents to then see whether or not autism spectrum disorder helps, to for others to understand, as well as the parents to understand why that child is struggling.
Shawn [00:07:35] So, Dr. Smile. Parents come in and there's a huge variability in what they might know about autism spectrum disorder. So how do you describe what it is?
Dr. Smile [00:07:46] I'm very visual, so I use a lot of examples by drawing to help families understand what autism spectrum disorder is. I start out by saying it's a neurodevelopmental disorder, which means that it's brain based, that's where there's difficulty, and it's manifested in challenges in many many different areas in a child's ability to function. The primary ones are communication. So it impacts on how your child communicates with others, with family members, as well as try to get their thoughts from in their brain, out through their mouths, so that others understand what they're feeling and how they see the world or view the world. The other component is that social skills component, which impacts the way they relate to others, the way they play or engage, the things that they're interested in. And then a larger component looking at different behaviors, or the way they respond to external stimulus, such as sound or light, tactile, so touch, smells or things how they prefer things being in their environment as well as difficulty with transitioning. I really explain to parents that this is not a disorder where I can do a blood test and identify that this is autism. It's a term and you'll hear it a lot in the literature construct, meaning that clinicians as well as parents come together to say that if you have this cluster of symptoms and it impacts on functioning, then the term we use is autism spectrum disorder, and the term is meant to be a spectrum as that word says, where kids could have some impairment in one area and more impairment in other areas. So when I sit and speak with families, I'll draw a circle of each of the areas to see how impaired that child is, and mapping out how significantly impaired that child might be in one area but has amazing skill in other areas. And what we try to do is then map or match intervention to help that child function or limit or decrease the level of impairment in each area that's been affected. I try also to let parents, it's really hard for parents because whenever I do give a diagnosis, there is once we use that term autism spectrum disorder for some families, they're happy to hear a term. Now they have a reason why. But then there are other families who, after hearing that term, they hear nothing else. And so I always say that our understanding of autism spectrum disorder is evolving and it evolves by information that we learn from adults who are on the spectrum or youth who are on the spectrum and how they define themselves or see themselves as being very productive contributors to our economy and our society which they are, and for those who don't have a voice trying to look at the things that they do that are just exemplary and build on that.
Dr. Heidi [00:10:58] I like the way you talk about using the visual because it really gets at that sense that it's not like a necessarily black and white diagnosis.
Dr. Smile [00:11:06] Or static.
Dr Heidi [00:11:07] Or static. Yeah. And that it really like it conveys that idea of a spectrum. Right. That kids present differently.
Dr. Smile [00:11:15] They do. Yeah.
Shawn [00:11:16] So back to the assessment process. Can you tell us about the steps involved?
Dr. Smile [00:11:22] They come to us for this assessment, but it's a two way street. We benefit so much because many things that are not necessarily written in the text we're seeing in our kids. And so I learn each day not to be rigid in the way I think and in the way I assess kids, but to be open to their perspective. So the developmental process will include a history, looking at a general medical developmental profiles and looking at other medical contributing factors. We do observation of the child just seeing what do they do when we don't put any demands on them. And we do a physical examination, and then we'll also support our overall formulation by doing diagnostic testing or standardized testing, which is also play based. Or we may also involve other allied health care providers, such as a speech language pathologist if we need to get a better sense of receptive and expressive language. We'll also collaborate with our psychologists if we're concerned whether or not cognitive impairment might be a comorbidity or impacting on that child's, our understanding of that child's development, just to get a holistic picture and a bigger picture. So for our younger kids, they may not necessarily do cognitive assessment, whereas it will be important in an older child as academics is a very big challenge, and an important target, and outcome measure for many families.
Maureen [00:12:52] And I don't know if we want to talk about Dr. Keifer, how does that process, does that process look any different when children come to you for an assessment?
Dr. Heidi [00:13:03] That's a yeah, that's an interesting question. So, Doctor Smile highlighted at the beginning how she's a developmental pediatrician, and so when a child is going for an assessment with a query of ASD a family might be seeing a developmental pediatrician, they might be seeing me or a psychologist, or they may be seeing a nurse practitioner as well. So there's a small kind of body of professionals that can actually make that diagnosis. And oftentimes it's up to our intake department to decide, like, which professional might be best suited depending on the age of the child and the observations that have been noted in terms of like strengths and challenges. So a lot of what Dr. Smile highlighted in terms of collaborating with other professionals potentially is speech language pathology would be included in the psychological version of that assessment. A lot of times we are also doing the the cognitive piece as well, although we tend to be a little bit more tentative in our conclusions about the cognitive piece, because we don't really start to think about that kind of development, like thinking and learning skills really stabilizing until the kids are getting older. Lots of factors go into that, right? Like, how much exposure do they have to kind of like enriching activities? How much how much are they exposed like language rich environments as well, and so a lot can really change, especially in those first five years. So we might, I would like to describe it with parents as is we're gonna give you the results of you know, your child's thinking and learning skills, but it's best to think about it as a snapshot in time. It's like we're taking a picture and this is dated this particular date, but this can change later on, and it's really important to follow up. So one of the benefits is that we can kind of put a little flag out there to say, like monitor this child's development over time to make sure that they're there on a good trajectory.
Maureen [00:15:04] Oftentimes you have parents that come in and they'll say, oh, no, my child doesn't behave like this at home. They never do this. You're seeing something completely unusual. And so it's very hard for them to buy into a diagnosis because they think they're seeing a behavior that they haven't recognized at home. Is it helpful, like so there's a couple parts to this question, is it helpful to ask them to bring videos?
Dr. Smile [00:15:26] I've had a client who was, which had different challenges or behaviors during the assessment and parents were saying this was like a new environment for them, and this is not how Johnny worked, um, behaves at home. And as I said our assessment is a perspective taking type of assessment, right? It's your perspective, parent's perspective, teacher's perspective and putting that all together and trying to figure out what's really happening. But the most important perspective is a child perspective. So I would say, OK, let's do a video when he's at home, when there are no demands placed on him, or we'll do video conferencing using OTN to see what Johnny's doing in his natural environment. And so we could observe. And this is why I like using the playroom often because the playroom is fun, not stressful, there may be other kids there. And I like just observing kids to see what do they do on their own when I'm not trying to prod them or giving tasks for them to do. And I think in that moment and if parents are able to also to observe this from whatever mechanism to see how their child engages with others or when they're brought in a room with so many toys, as Heidi said, you know, blocks would they go to the cars, and if they do go to the cars, what are they doing? One thing we have to be mindful of, even though the autism spectrum disorder, it is categorical where you check off lists of what task a kid is doing or not doing or atypical presentation, we sometimes forget the quality of skills, right? So in the assessment, we're not only looking at presence or absence or differences in their presentation, but we're looking at the quality of that skill. So a child could have eye contact, but he is one millimeter away from your face. Now, that may not be an appropriate presentation or socially accepted engagement. But if I had a checklist, he did make eye contact, but eye contact was atypical.
Dr. Heidi [00:17:40] I've also had some parents who they just naturally brought in videos to show me they were like wanting to kind of give me a taste or a glimpse of what it's like at home and stuff like that. And in some cases, it helps you see what parents are paying attention to and what maybe they value. So I have a lot of parents who come in and they're very excited about all the child's rote skills. They know the alphabet, they know the numbers and stuff like that. And they'll kind of like and they might not be able to do it maybe in the one hour that I'm seeing them or however long and in kind of like a different setting where there's lots of other factors and affecting how engaged they are with me. So they'll show me what's going on at home. And, yeah, I'll be able to kind of see and reinforce oh, yeah, like I can see those skills are happening and stuff like that. I wonder, like, you know, a lot of times when kids are that age too, they want to share that experience. So they may be looking back to you, trying to get you involved in the activity. And I noticed, like your son or daughter, like they seem to be doing more on their own. Right. And it kind of open up at this discussion, too, to maybe even broaden like, well, what are they noticing. Right. That they might not have been, like, so focused on before.
Dr. Smile [00:18:56] Right, and then you have that conversation of the function of that skill. Right. So while great that the child is able to do it, but then how useful is it in engaging others and expanding that skill set? And as said, it's important to have conversations with parents. It's not that I'm right, you're wrong, it's like, okay, this is what's happening, what could this mean? And then what's the next step?
Maureen [00:19:25] So video sounds super helpful, though, too, because the other thing that I think I also captured is that it also gives you a segment of the family piece. When you're saying this is what the parents are bringing to me and saying, look, I'm so proud of my child can do. And it gives you a glimpse into that family situation. And it's nice to be a tap in to that. Like, I really. Yeah, I love that idea.
Dr. Smile [00:19:49] Yeah, and acknowledge it. Right. Because remember, as Heidi said, we only see a snapshot. Yeah. Right. So we may not be able to see those great skills that are happening within a home environment. So we're able to go, oh my goodness, yes, he he does speak. He does use words. Right. Whereas when he's in our assessment, he decides not to speak because he's so overwhelmed or anxious. Right. And I think it honors parents as well because they're giving their history and he's not doing it at the time, they got a little bit frustrated. Please do this. And if we saw a video, then we could go, yeah, that's correct. Good.
Maureen [00:20:27] I kind of wanted to ask both of you now, parents are bringing in a lot of different emotions into this assessment. What are the ones that you often see? To you first, Dr Smile.
Dr. Smile [00:20:44] Fear. And, just this uncertainty of that child's future. I think those are the two biggest emotions that are being expressed and sometimes it's expressed in behavior as opposed to verbally stating it.
Dr. Heidi [00:21:05] OK. And you, Dr Heidi, what do you see?
Dr. Heidi [00:21:09] Yeah, I think I would I would agree with Dr Smile. Those definitely are the ones that I see most commonly. I think also it depends on kind of like what their journey has been up until that point. So I specifically work with kids under five, and their background story can really differ. So we have kids who might have been going to daycare for a few years, they might already have been involved in other services, like Early Abilities, which in Toronto is like not for profit speech intervention service that parents can access. And so in that situation, there's lots of eyes on a child, right, so families might be coming in and they kind of have this sense of like, OK, in different settings this is how my child is being perceived, right, and and this is like a lot of times there are concerns that have been brought up to them. So they have kind of a full picture. But then in other situations, children might not have had exposure to those same experiences. So they might be staying at home, and what have you, and there's absolutely nothing wrong with that, every family kind of makes your own choices in terms of what's best for their child, but they might also have almost, kind of like an insulated view of their child where they don't know, like how is my child going to act in different situations, right, or be able to compare it to other children their age, like same age peers, basically. So I don't know if I can actually, like, attach a label to the emotion attached to that as much as to say that yeah, parents are coming up with very different stories, which is interesting when you're thinking that the children are so young that we're seeing.
Dr. Smile [00:23:08] Yeah, I agree with that as well. I think it depends on that journey and the family itself because on one spectrum, we have this uncertainty, anger, fear. But then in the older kids as well, where they may have seen multiple healthcare professionals and haven't pinpoint what's happening, and I see this type more so with the kids who are cognitively smart and are struggling with anxiety or peer relationships, and when when they have an assessment of autism spectrum disorder, best define what symptoms we're seeing, I've experienced families expressing relief as, OK this is what it is. Now, I can specifically target this. What supports do I need to put in place so that my child is successful? Right. And success looks differently for many families. Right. And it's to honor that success or their definition of success. And we work towards that goal.
Dr. Heidi [00:24:09] I think also, too, like I mean, doctors, by your description of autism spectrum disorder, like was really rich. And I think at younger ages, a lot of the times I'll see parents come in and they feel like they have a sense like, oh, they're not talking yet, right. Words haven't come. So it must be like a language delay. Right. So in some ways, there's there can be a little bit of like of their own, like pre diagnosis of what's going on. And especially when you look at kind of like the checklists and stuff like that that they get probably with their primary care provider, health care provider, I should say. A lot of times, like that's kind of what they're on the lookout for. And not necessarily some of those like other areas, like social skills and stuff like that. And then you add onto it like maybe they're not in daycare. So you're not really seeing those social skills at play.
Shawn [00:25:03] What can a parent do to prepare for this assessment?
Dr. Heidi [00:25:07] I think anything in terms of like supplemental information. So if your child has been involved with previous assessment or intervention services and there are reports that you can bring in if there are any progress notes or report cards, if your child is in a daycare or preschool or is already in school, that can be really helpful as well. Providing consent to talk to a daycare educator or a school teacher is really helpful too. A lot of times we will see differences like where a child acts one way in the home and then acts differently within the school setting. Right. And transparency in the sense, too, that knowing that, like, the more kind of sources of information that we have, the better for us to help kind of make a decision. Right. Or just really see like, OK does an ASD diagnosis kind of like fit the overall picture of how this child is functioning across settings? Sometimes parents are a little bit concerned and that might be just where they're at in terms of like kind of processing, like, OK, this assessment, is my child going to get an ASD diagnosis? I don't know if I want the daycare to know that at this point. And so it's it's definitely if you're a parent, it's worth having that conversation with the person who's doing the assessment with you to just to help you decide, like, OK, what are the pros and cons of of having you talk to that person?
Maureen [00:26:40] You bring up a really good point. I think that that's really interesting because we do hear from parents that are concerned about once the label is put on my child, it's there for life. And there's some concerns around that. Do you hear that very often in the clinic?
Dr. Smile [00:26:56] Often. And I think that falls into that fear factor. Right. Because I try to frame our assessments as: I'm Dr. Smile, I'm partnering with you right now in this moment in time to best understand your child. And at the end of that partnership, I hope to transition you to a new partner or another partner who will then continue with that support. And if it's, I think we kind of challenge, for developmental pediatrics, especially in that field, we challenge what's typically known as a doctor patient relationship. Right. I'm not it's not like a yes or no answer. And development is so fluid and variable and changes. And as stated earlier, at a moment in time, if I saw a child at age two, they may have some red flags, which we call concerning symptomatology is for autism spectrum disorder, but may not have met the criteria. But as they got older, when that social demand kicks in or their language skill has improved so much and now we're looking at a quality of those skill sets, then they may now meet criteria for autism spectrum disorder. So when you're having a developmental assessment and let's say that child did not meet criteria but had concerns, it's not like we say you don't have ASD go home. We have to honor or identify those concerns and say, OK, what could this mean, and how do we support? And it's not an all or none type of diagnosis or relationship with the parent. And I think it's a developmental pediatrics is a relationship. And anyone who works in this field, we're building relationships with parents because coming in to do an assessment when you're talking about your child, this precious connection that you have and you have all these hopes and dreams for this child and you are identifying the challenges that they're seeing. We all see the challenges. But let's look at the things that this child is able to do really, really well, empower parents and identify that okay, it's gonna be a little bit rocky, but let's get you the right supports.
Maureen [00:29:10] Okay. Before you came here today, Dr. Smile, we asked you to think about a family that really changed your perspective. What came up for you?
Dr. Smile [00:29:22] Flashes. I think on my journey, I've been privileged enough to have families open their homes and their hearts and their their lives to me. And one of the most impactful relationships I've had is with a family from home in Jamaica, where I met an amazing lady, Kathy, who is who founded Jamaica Autism Support Association, which is for families of parents with kids who are diagnosed with autism spectrum disorder. And watch her son, Kyle, who is phenomenal, what they've taught me in their journey, and he's now a young adult, is that where there is nothingness, and at the time when this mom got her diagnosis or Kyle received his diagnosis, there's nowhere for her to turn. And, it was fascinating to see in the absence of something, how this mom created this new idea of parent support group in a developing country and connected parents, and parents were so hungry for that type of support and they will travel miles for hours just to come to a meeting once a month to hear other families about what they're doing, which is really good, what things were not good or just to talk or connect. And Kyle, who is diagnosed with autism spectrum disorder, can play the piano, he does deep sea diving, he swims, he's a competitive swimmer. And I look at my own life and I stop to say, these kids teach me to be fearless and to be limitless. And every time when I come to work and I feel as if I can't do that that's too much energy, too much time, I stop and I reflect back on the Kyles, the Caleb's, the clients that I've seen, and for them to be able to come in any clinic visit and tolerate us poking or asking them to do a test that are not interested in and yet still they do over and above, then who am I? I should go over and above, and also recognize sometimes when I can't, right, and when I do some introspection and I reflect, I pause every time I speak with families and I ask, how are you doing? What are your thoughts? What supports do you have mom or dad or grandma? Because we we tend to go on and on and on and on, but some of our clients or kids with autism spectrum disorder has taught me that, yeah, there's no boundaries, but sometimes you have to pause, take a breath, like they learned a skill and you're going to keep doing that skill and then we go to the next level.
Maureen [00:32:20] I think, too in previous conversation you had talked about the child and that you're not dealing with a child in isolation. It's like a small segment of a family unit. Talk a little bit more about that.
Dr. Smile [00:32:36] We're all connected and our kids, when they clients, when they present to us, are not living in isolation. And when we look at behaviors, we look at challenges that they're having. Most of their presentations are formed or created by their experiences, and the experience will be within the home environment, school environment or the community. So when we're seeing kids we should always look at the other levels of engagement so that they're participating in, family, community, school.
Maureen [00:33:15] What one thing would you say to the parents who are now on the waitlist for an assessment?
Dr. Smile [00:33:23] I would ask parents to look at, or identify, rather, what their child is good at doing. I'd ask them to look at what makes their child really, really happy. Because we're going to use that and leverage that for any intervention program that's been had. We focus a lot of what is missing, what is less, what's impaired. But these kids are phenomenal in many different aspects and sometimes we overlook that. So I will encourage, or rather recommend that parents pause and see what their child is gifted. Everyone is gifted in something, and if we could identify that, then we could always use that and continue to build that.
Shawn [00:34:12] Dr. Smile, your response to that question shows that you clearly care a lot about your clients. What are some of your favorite things about working with the ASD population?
[00:34:25] I get to learn every day. I get to learn from families everyday. I learned yesterday about cosmic yoga on YouTube. This wouldn't be something that I'd go find out on my own. But learning information from each client that I could then apply to other clients. So it's this networking that happens and just the joy of being. I will tell the parents that I'm here to serve you, because that's what our job is, is to support you and to facilitate you accessing the right supports. And so my my joy in coming to work is to help. So if there's any way I could help in whatever role I have here at Holland Bloorivew or as a human being, that's what I want to do.
Dr. Heidi [00:35:18] That's amazing. So I think we've touched on a lot of important details about what happens when a child is getting assessed for autism spectrum disorder and helping parents and families know what to expect in the process. Thanks for your insights, Dr. Smile. And I know you're going to be popping into one of our subsequent episodes on eating and feeding issues and ASD. We're going to continue some of these themes in our next episode. And we're also going to go further into thinking about what happens if your child does get a diagnosis of ASD.
Dr. Heidi [00:35:51] If you listen to this episode and have comments or ideas that you'd like to share with us regarding future episodes or what you heard today, feel free to e-mail us at ASDengage@hollandbloorivew.ca
Dr. Heidi [00:00:11] Welcome to ASD Engage a podcast for families of children who are currently waiting for an autism spectrum disorder or ASD assessment. I'm Dr. Heidi Kiefer, a clinical child and adolescent psychologist.
Maureen [00:00:25] I'm Maureen Mosleh a psychometrist.
Shawn [00:00:27] And I'm Shawn Brumby, also a psychometrist. We work on teams that assess children for ASD at Holland Bloorivew Kids Rehabilitation Hospital. Each episode, we will present a topic that reflects concerns brought forward by families we work with.
Maureen [00:00:43] You'll hear information regarding the assessment process and insights and information from a variety of specialists. And more importantly, we'll talk directly to families who share some of their personal stories with us in an effort to help guide you through the assessment process.
Shawn [00:01:00] Welcome to Episode three of ESD Engage. In today's episode, we'll be discussing how it feels to hear from a clinician that your child has ASD. In this episode we'll speak some more with Adrienne, a parent who shares her family's experience of receiving an autism diagnosis for her daughter. We'll also talk with Dr. Abbie about communicating the diagnosis in an effort to help our parents understand what the process might look like.
Shawn [00:01:28] Our first guest joining us by phone is Dr. Abbie Solish, a psychologist here at Holland Bloorview Kids Rehabilitation Hospital and the Autism Research Center. Welcome, Abbie.
Dr. Abbie [00:01:40] Thank you it's so nice to be here.
Shawn [00:01:42] So to start off, could you tell us a bit about what you do here at Holland Bloorview?
Dr. Abbie [00:01:48] Sure. So here at Holland Bloorview I have a couple of different roles. One of my roles is doing diagnostic assessments for young kids with suspected ASD or other developmental concerns. Those kids usually range between the ages of about 18 months and four and a half years. And in my role there, I see children and their families and provide assessment around potential diagnostic concerns. The other role that I have is running cognitive behavioral therapy groups for children with ASD and anxiety. And finally, I work at the Autism Research Center supporting a number of different research projects, looking at early intervention and early diagnosis for kids with ASD.
Shawn [00:02:38] That's great, you're a busy woman. I'd like to introduce our second guest, Adrienne. Adrienne is a mom to a daughter who's been diagnosed with ASD. Thank you so much for joining us Adrienne, can you start off by telling us a bit about your family?
Adrienne [00:02:54] Yeah I'd love you. So my husband and I have two daughters. They are now 9 and 10. My 9- year old was diagnosed with autism when she was 2 and my 10 year old was diagnosed with ADHD when she was 9.
Shawn [00:03:10] Adrienne, in our first episode, we shared a clip of you describing the pre diagnosis wait, your first appointment with the pediatrician and ultimately receiving an ASD diagnosis for your daughter, Amira. Can you tell us what it felt like when you first heard those words that your daughter was being diagnosed with ASD?
Adrienne [00:03:30] When she was being diagnosed with ASD, it sounds really strange, but I was relieved because we'd had a discussion about, you know, it could be ASD, it could be global developmental delay, which was explained to me as a constellation of delays that we don't really understand and don't have really specific treatments for, And that seemed a scarier place to be for us. So, and as I learned that autism may be what she ended up having, you know, I started reading and checking the boxes, and in my mind, it it didn't make sense that it would be anything other than ASD once I had read a lot and kind of pieced things together. So, at that point, I was very relieved to hear it. When it was first introduced to me, I was incredibly scared and upset and sad and angry and like a myriad of emotions, because it was something I had never thought about before and didn't know - I didn't have any personal relation to someone with autism spectrum disorder, so I'm embarrassed to say that, you know, the movie Rainman was probably the only reference that I had to autism, which is horrible, but that's the way it was, so back then, it was very overwhelming.
Shawn [00:05:05] And can you tell us how receiving that diagnosis changed things for your family?
Adrienne [00:05:11] You know, I think you have children and there's this boundless opportunity and boundless potential, um you just assume that there will be every opportunity in the world and that you and your child can choose any path that you like. And I think sometimes there's some arrogance of as a new parent, and I can just say for myself this arrogance of, well, you know, we can do well, you know, we can kind of go any direction we want, we can be in any environment we want, we can ... it's our choice, quote unquote, um versus being a bit more sensitive to who your child really is, what...what makes them happy, what brings them joy, what is stressful for them and not stressful for them. And then structuring your life based on that versus what you have decided you think you want to do or what you think you want your family to do. So we've moved from a place of thinking we could kind of perscribe the way our family would move, and move to a place of OK, hold on a second, we don't really get to decide how our children are going to develop. We need to learn what works for them and where their strengths and weaknesses are and how we can support them and work with them and see the joy that they see and and really find joy in that instead of looking for the joy that we had decided where it's going to come of raising these children.
Dr. Heidi [00:06:58] So I want to know for you what's the difference between you as a pre diagnosis mom and a post diagnosis mom?
Adrienne [00:07:07] A big one. It's, I mean, it's almost embarrassing to say to think about kind of my my arrogance, to be really honest, prior to not appreciating kind of the diversity of development in children and to not appreciating that children and especially kids with neurodevelopmental disorders have these unique gifts deep down in there that when you get to, especially if it takes a long, hard road to get there, are incredible, so satisfying and gratifying as a parent to see kind of blossom and also bring such depth to people around them into the world around them, that I think is tough to see when kids don't struggle, you know? And so now I you know, I see Amira overcoming things, and the littlest success is a really big deal for her and it's a really big deal for me, and that's so satisfying. But I also see other people who initially may have cocked their heads at her differences, start to appreciate the nuances and the the little crazy quirks of her, despite the fact that, you know, there's still things that she struggles with and for them to start to see and appreciate those things, and I think to myself, had that had she not been kind of our teacher, we would not have learned the lessons and I would not have learned to look for, you know, those really simple characteristics in kids that just bring that goodness in them had I not had a kid that struggled. So I think I'm a more compassionate, reflective person. And had I not had had Amira, I don't know that I would have found any other way to get there. So at this point, granted, seven years later, her, I, I wouldn't trade it for the world. But that's not to say that when she was first diagnosed, I wouldn't have told you that I would have, you know, like to close my eyes and pretend this had never happened. And had you given me the chance to just make this not so, I would have jumped up and said, please, let's do it.
Dr. Heidi [00:09:57] Yeah. Yeah, it takes time.
Adrienne [00:09:59] Yeah.
Dr. Heidi [00:09:59] Yeah. So, Dr. Solish, like, we've we spent some time talking to Adrianne about what it was like for her to to get the diagnosis, to recieve that information. What's it like for you on your end when you're giving that diagnosis?
Dr. Abbie [00:10:17] It's such a good question. You know, I think, what it's like depends, again, a lot on each family and what the family has brought to you in terms of their readiness to be there and their experiences to date. So I feel like a whole bunch of different emotions come up for me when I'm providing the diagnosis, depending on the pathway to how I've gotten to the diagnosis. So I can expand on that and just give you a little more information about what I mean. But I think for me that there are some parents who come in and they're very, it's very clear to them why they're there, that they're really the ones driving this ship and saying, I went to my doctor and I'm concerned and I've been doing this reading and this is where I'm at, and what do you think? Please validate my experiences and my challenges that I'm having. And I feel like in those moments, the diagnosis, I can feel for the parents that there's, of course, all of the emotions that only a parent can describe best, as Adriienne just has. But there's also that sense of like I was right. My concerns were taken seriously and it's been validating for me to engage in this kind of process. So in that case, for me delivering the diagnosis, I feel like it's a bit of an easier job because I'm very easy to align with the parents. I think there are some parents who come in and aren't really sure how they got there. You know, it sounds like for Adrienne, there was a long conversation with a primary care physician, for some of our families that hasn't been translated to them. So they're unsure why am I here? You know, I think that my child has a language delay, I don't see any need for this ongoing assessment, there's a history of late talkers in my family. And I think for those families setting up from the beginning the expectation of why they're there, what I'm looking at, what we're doing and really building that rapport and taking them along the diagnostic journey, from my perspective, is is really important. And in those cases, you know, I think my emotion in providing the diagnosis feels a little bit different because I know that that readiness and that understanding of why they're there and what the experiences have been is a little bit different. So I think for me, you know, obviously it's my job as a professional to remain cool, calm and collected. I think it's also my job as a professional to communicate that diagnosis with warmth and empathy and and compassion. But I think what I'm feeling deep down inside really depends on what emotions a family has elicited in me along the little journey that we have gone on to get to that point.
Dr. Heidi [00:13:06] So question for both Dr. Abbie and you, Adrienne, and maybe we'll start with you, Adrienne; so kids and parents and families are coming in and there's a possibility of feeling a bit intimidated when you're working with a developmental pediatrician or you might be working with a psychologist or at Holland Bloorview a nurse practitioner, who is the expert during the assessment process?
Adrienne [00:13:34] (Laughter) I I would say that that the parent and the family is the expert because they have the most experience with the child. And that as a family, you should feel confident about that. And also, I would like to say, because it's true in our family structure that that siblings often can be experts in this area. And so Amira has an older sister, Alyia, who could likely have given most, if not all, of the information to clinicians about what she observes about her sister on a daily basis. So I think regardless of their title, the people who spend the most time and are most focused on a child are the people who are probably best able to speak to their realities and therefore the experts.
Dr. Heidi [00:14:28] Yeah, that's so interesting to think, like you mentioned, that there's like not a big age difference between Amira and her sister, Alyia, and yet Alyia is like a great reporter.
Adrienne [00:14:39] Absolutely. Yeah. Yeah.
Dr. Heidi [00:14:41] And what about you Dr. Abbie who do you think is the expert during the assessment process?
Dr. Abbie [00:14:47] I couldn't agree more with what Adrienne just said. It's really my approach when working with families that one of the first things that I want them to know is that I have expertize and training in child development and in early diagnostic and diagnostic questions. But it's really a collaborative process between a professional and parent. And parents really are the experts on their children. You know, we are getting such a small window into the life of a family and a life of a child during our assessment. And I as a professional and as a parent am so aware of how different a child can look in a clinic setting than what they may look like out in the real world, be it at home or in the community or at a childcare setting. And I think our only way to reliably access that information is through parents. So I believe really strongly that in setting up the initial discussion with the family, that they need to know that they are an equal player in this assessment process and that they are the experts on their children and that this assessment can't happen without them and can't happen without their insights and their observations. And so I think it's a true partnership and a true collaboration, and I want parents to feel empowered and confident that their knowledge of their children is an integral part of the assessment process.
Dr. Heidi [00:16:10] That's amazing. Another question for for both of you as well, so and again starting off with Adrienne, in some assessments, well, so thinking about some of the assessments that I do and this would hold true for for Dr. Abbie as well, we will talk to day care or school teachers. And one thing I've consciously changed about the discussion with those individuals is that I start by asking about what the child's strengths are. And sometimes it's interesting because sometimes the teacher is thrown a bit because they're often used to being asked about what are the delays or what is going wrong with the child. And it's really easy to fall into thinking that assessments are focused on deficits or weaknesses. And I'm wondering, starting with you, Adrienne, how can that perspective be shifted do you think?
Adrienne [00:17:03] Yeah. That's a tough one. Because as a parent, I think you're naturally stressed about what isn't happening and less focused on what is happening. And I mean by default, you're you're interacting with health care professionals, because you need to know, you want to understand the things that in your mind aren't right. Quote, unquote. And less inclined to spend time talking about what is going well. But I mean, I can say now, being what are we seven years into this, that that is necessary and that helps put into perspective the child being a whole person and not just a constellation of things that are wrong with them. But I can say that naturally it was it was hard to go there because I felt like I didn't want to spend the time talking about the things that were going well, because I was so torn up about the things that were, quote unquote wrong. And I wanted help to again, quote unquote, change the things that weren't that weren't typical. So it's hard to do.
Dr. Heidi [00:18:25] Yeah.
Adrienne [00:18:26] And I think I love the idea that the health care providers are trying to nudge us in that direction. But as a parent who is in the initial stages, I remember that feeling really uncomfortable.
Dr. Heidi [00:18:41] Yeah. So yes there really is like a trajectory that you're talking about. So there is a period maybe when you are kind of focused on more of what's not happening.
Adrienne [00:18:51] Yes. Yes. And then as I think as you appreciate the strengths in your child and feel better capable of managing, then you start to appreciate the really beautiful things about your child. But that takes time.
Dr. Heidi [00:19:13] And for you, Dr. Abbie, how do you think that perspective can be shifted?
Dr. Abbie [00:19:20] I agree with Adrienne that it's it's probably challenging for some families to really be focused on the positive when you've been brought into an environment that inherently is anxiety provoking and scary and challenging, and like Adrienne mentioned, the reason that you're there is because you or someone else has expressed concerns about your child. I you know, I, I think it is important and I always make sure that I ask parents, you know, what do you see as your child's strengths, what seems to be going well? And even if that's not the thing at the forefront for families during the diagnostic process, I really make sure that in my feedback with parents that instilling that hope and that optimism and that positivity is a piece in the diagnostic process. So, of course, there's the news of receiving ASD, and I really think the way it's delivered that I, or what I strive to do in the delivery of the diagnosis is to help families see that this isn't the end, that there is so much that you can still be hopeful for, while simultaneously recognizing that for some families, the news of the diagnosis can be really devastating and really overwhelming and really scary.
Dr. Heidi [00:20:35] Yeah, it's so interesting. We're talking about empowering, empowering the parents because it sounds like you're you're also really conveying like like a sense of agency that parents, like, can do stuff and that they've been doing stuff that's that's really been helping their child along the way as well.
Dr. Abbie [00:20:52] Yeah, I find it actually, you know, every feedback that I do is different because every family that I need is different. Every child is different. But one of the things that I really do want parents to leave with is that sense of empowerment, knowing that they're making good choices. I mean, just by being brave enough to receive, you know, a referral and be able to show up for that appointment and sit in the office in front of somebody and talk about what's hard for your child, that takes courage, and there's often situations where other people are saying he's young, I mean I see a lot of really young kids, but he or she is young, you know, it takes time, she'll talk, don't worry about it. And I think just by parents following through and saying, no, I'm going to go through with this process and I'm going to go through with the assessment. I think that takes courage. And I think that parents are really making a good choice for their child, and I think they need to know that they've that they've made a good choice just by being there.
Dr. Heidi [00:21:49] Yeah. And that comment about helping parents to see kind of like the bravery and the choices they they've made, I think that really ties back to what you were saying earlier, Adrienne about like having to trust your gut, right?
Adrienne [00:22:01] Yeah. And and take in but filter opinions of people who may not spend as much time with your child as you do, and who may have not have as much information as you may once you start to look into the diagnosis of autism. Yeah, I've I've heard so many times, I'm I'm sure she's just the quiet one, you know, she'll speak eventually. Oh, you're older one is the outgoing one, she's just the shy one. So it took a little a little time, but also some conviction to say, OK, you know what, but I've I've done some reading, I've interacted with professionals, I'm seeing these things that are subtle and that might not be apparent to everybody, and I'm going to trust that because I've spent the time and I'm connected to people who have spent the time to appreciate these these little nuances.
Dr. Heidi [00:23:02] Yeah.
Dr. Abbie [00:23:03] And I always want to say to parents, you know, you are the one that knows best. I mean, at the end of the day, parents really do know best and they are the ones who spend the most time with their children. And I think any good professional is really going to take into account first and foremost, first and foremost, you know, what is the parent sharing? What are they disclosing and and what have they observed? Because I've heard too many stories of parents who said I you know, I've gone to my doctor countless times and I've mentioned the language delay or I spoke to this person and they said, oh, just wait and see, just wait and see. And I think there are many parents out there who are advocating for these types of services for their child and to be able to get an assessment, and so I think for those parents, it does, it take it takes a lot of strength, strength and it takes a lot of conviction to be able to say, I'm going to do this and I'm going to go through with it, even though this is hard and scary, this is the right thing. And I think we really have to make sure that we trust parents instincts, and we trust parents opinions, and that we really, again, empower them to know that they're such an important part of this process.
Maureen [00:24:14] I have a couple of questions for you, Dr. Abbie. One of them that you just made me think of now, how young is too young for an assessment? Because it's interesting I was just talking with parents the other day when we're making some calls and one of the parents said, well, my doctor said that my child is too young at three for an assessment. How young as two young?
Dr. Abbie [00:24:37] A very good question, Maureen, you know, and again, not one word it's necessarily black and white. I think, I think diagnosing really young kids with ASD takes a certain level of sensitivity and understanding of a parent's perspective. But I don't really ever think too young is is a thing. So we're diagnosing kids now, you know, at one and a half. And as part of the research study that we're doing where we're looking at younger siblings, baby siblings who have an older sibling with a diagnosis, we're following development over time. And, you know, I don't think I would ever diagnose the child, let's say, under 12 months, or I never have, I should never say never. You know, around 15 months we may start seeing some of the more concerning behaviors and there are children who were diagnosed around then. Certainly from 18 months and up I don't think there is, there is a too young and I think, you know, if somebody be it a professional, a daycare worker or a speech language pathologist or even more so a parent is saying something is not quite right. My answer to any parents who asked me that, be it friends and family, be it people who come to me professionally, is it's better to follow that instinct and to go through with receiving some kind of evaluation, and if it's too early to make a diagnosis, because some children will prevent more clear signs earlier on and some it will take a little bit of time till they're developing maybe closer to two, two and a half, three, and then, you know, some kids as they even continue to get older. You know, there's always the idea of ongoing monitoring and looking out for certain behaviors and development. But I really, I don't think there is a too young. I think, if especially, if the concerns are being driven by a parent, I would say, why not take a look at what those concerns are and if they're coming forward from a professional and a child let's say is three, or two, or two and a half, you know, I wouldn't... I wouldn't delay. You know, it's really my approach to assessments and to life, really, that sitting around and waiting can be actually more anxiety provoking than getting answers. So even though it's really hard to make a brave choice to go forward and to participate in an assessment, I think it's better to have the knowledge and to know than to wonder or to look back and say, what could I have done differently? So if concerns are identified early, I say go through with the assessments and trust yourself and the professional that you see that you guys will come together to make a good choice of what makes sense for your child be it a young diagnosis or be it monitoring until they get a little bit older.
Dr. Heidi [00:27:28] We specifically wanted to talk to you because we've heard great things about your work with families in particular. And you were talking a bit about feedbacks, and it sounds like you are very attuned to families in that moment and the, all the mix of emotions that might be happening, and one of the things that we've heard that you talk about is in the feedback piece of things is that nothing about your child actually changes with a diagnosis. What do you mean by that?
Dr. Abbie [00:27:59] Well, I think thank you for your kind words first of all, I also think that...it is actually something I often say to families, so you've received correct information. I, you know I really think that part of what I want the families to know is that getting a diagnosis doesn't change who your child is. The purpose of getting a diagnosis is to help guide treatment and services and support that families can access and that children can access in order to enhance development, boost developmental trajectories and help families as well just to recieve education and funding that can be beneficial. You know, the child who comes into the assessment with all of the strengths and some of the challenges that they bring is the same child who leaves the assessment. And I think that a diagnosis helps to explain an to perhaps almost categorize what the challenges are that the child and who they are and the affection and the silliness and the positivity that children can bring to families doesn't change. And I really want families to know that we're seeing that, we're seeing the good, we know that it's there, we hear that it's there, and all that good is still there. And so your child is still your child, and now, hopefully over time, that diagnosis will help to sort of lay out a path going forward or be like a key that opens up doors, to access more services.
Shawn [00:29:29] Back to Adrienne. We're wondering if you could tell us a bit more about your daughter when she was first diagnosed and maybe some challenges, strengths and how things have changed over time.
Adrienne [00:29:40] Goodness. So when she was first diagnosed, she was talking, you could say. She was she was verbalizing words, but she wasn't using them meaningfully. And so that, I mean that in itself was confusing, when we first went down this journey of what's going on, because when, you know, people would say, well, she's talking, but it didn't mean a whole lot. So it's, I mean, initially there was a lot of we, she had a lot of difficulty communicating and we had a lot of difficulty understanding, and so there was a lot of what I now know to have been anxiety on her part and frustration on her part that looked a lot like a garden variety tantrum. So that was.. that.. that was most difficult, I think, before the diagnosis, because I just assumed that she was either behaving badly or I was doing a crappy job parenting. After the diagnosis, it was a bit easier to put into context, her... you know, the speed at which she would melt down. But then with that came the appreciation that this is gonna take a while. This isn't just going to go away. She's really dysregulated, she's really upset, she's really outside of herself right now, and so it's likely going to take a lot of work on our part to help her regulate. So there was...that was exhausting, for a long time. And we spent a lot of time co regulating with her and literally kind of bouncing her and and whispering to her and, you know, reassuring her that it was going to be OK and that, you know, we were with her and, so that took a lot of mental energy and physical energy, and a lot of detective work when we were, when she was little, because when she would melt down, you'd have that instinctive like what happened, if it wasn't clear, and in hindsight, now I can see some things that were subtle and I didn't understand back then, and that were so frustrating because I couldn't figure out why it was she was having a tantrum at this moment. There were instances now I can look back and realize that, you know, walking into rooms with with a multitude of unfamiliar people was really difficult for her. And she would literally drop to the ground, throw her head against the floor and start screaming. And I remember, I mean, this happened specifically at a Thanksgiving dinner. And I was so excited to see everybody, and I walked in to see family, and I was like (screams), and I'm sure my voice didn't help. But she just got so upset, and she had probably her worst self injurious episode that evening. And it was...it was heartbreaking and so perplexing to try to figure out what the heck had caused this. So just to say that there was a lot of this unknown initially, but as we started to understand patterns and see patterns, then things got much more easy...it got easier to manage because we started decoding her clues and then I could learn to predict what would be difficult and not difficult. So, you know, we learned very early on that balloons scare the heck out of her. So even walking into a room with a balloon would cause her to freak out, to literally start to cry before she could even have the words to say, like, I hate balloons. So we learned that we, you know, didn't do birthday parties with balloons or we go to, you know, a birthday party home, but just not go into the room with a balloon. So as we started to understand her better, then it felt like we could manage situations better and she would react less because she was being put in situations that would cause her a lot of anxiety,a lot less. So it's to the point now where we as a family are much better able to kind of predict what's going to work for her and not. And now she can tell us what's going to work and what's not. She just had a birthday and my...someone suggested that they bring balloons for the birthday, and so I said to Amira's sister, do you think we should have balloons? And she burst out laughing like, no, of course we should not have balloons. But you know what, maybe we should ask Amira. Like I mean, she...she can tolerate being in a room with a balloon now, so I said I said, would you like balloons for your birthday? And she thought about it and you could see the wheels spinning in her head and..and I said, maybe not the ones that are on the string that kind of move around and go everywhere, what about the ones that are on a stick that we can put in a vase or something? And she went, yeah, yeah, yeah, the ones on a stick, I like the ones that stick. And so today, like, there are balloons at our house and, you know, five years ago that would have caused her, like, immense stress. So it's just been a a journey of understanding what works for her, what doesn't work for her and what we can do to support her.
Maureen [00:34:56] Dr. Abbie., I want to ask one question here. There are people who may not feel as confident about the physician that they come in to see that they don't know. What advice would you have for that person where they can have a sense of ownership about this process?
Dr. Abbie [00:35:12] I think for a parent coming into this process, I think it start from the very beginning. If there is a way that the parents, when they hear from their doctor, we are going to send you to Holland Bloorview, I would encourage parents to feel empowered and to advocate for themselves and their child and say, why? Why am I being referred? What is this assessment? What is Holland Bloorview? Why am I going there? I think that would be honestly, if I could say to families just to get that peice, because when families come to me and don't know why they're there it's difficult because rather than have those...that time to think about, okay, I'm going for this assessment and this is why; it's basically thrown on them in the context of the assessment process, which I feel badly about, because I think if families can come in more prepared, it would be helpful for them in preparing their thoughts, preparing their questions and just emotionally preparing them for the experience. So I say that if that is a potential to have that advocacy start from the very beginning, from the referral source take that. If a family has that and they're thinking about, you know, what can I do while I'm waiting, I think, making some detailed observations about your child's development. You know, parents don't have to, and I don't want parents to sit and be writing everything down because I think that gives...produces increased stress rather than reduces it. But to really be watching a child's behavior. You know, what is it that they do well? What is it that seems concerning? What is it that I want to know? Why is this happening? So for parents to start making some of those observations and just just watching. Another piece that I find helpful, and different clinicians use this differently, but again, especially with the really little ones who maybe aren't in school yet, where we can't gather information from teachers or from other people that know the child well, I think I, I would say to parents, bring in a couple videos like star them on your phone and bring them in and show me, like what are some of the good behaviors? And some families bring some of those and some families don't. And some families will bring me you know, this is what it looks like when they play that they're cousins. This is what happens when I tried to disrupt the line of toys that they've made in the living room. This is what it looks like when he's in the bath tub and having so much fun. So, again, just to get to know what the child looks like outside of the assessment little box that we put them in for the purposes of our observations, it's really helpful to have those real world thoughts and observations prepared. You know, it's always tricky with the Internet because I think if somebody says your child may have ASD, then I think parents can start Googling a million different things, some of which can be very scary, and many of which are extremely overwhelming. So I say if a parent does know why they've been referred, reaching out to credible sources in order to look at, you know, what are the early signs of ASD, I'm going to start making my observations based on these checklists that come from a reputable Web site or a reputable, reputable source. And finally, I think for most of the young ones referred I think a referral for speech and language therapy is a strong recommendation that we always have and a service that, like ours, has a waiting list. So for families to make sure that they're on the waiting list for the publicly funded speech and language services, I think is a really important step as well.
Dr. Heidi [00:38:46] Dr. Abbie, how do you know what parents really hear when you're telling them that their child has ASD?
Dr. Abbie [00:38:53] There is actually few things about my job that I wish I knew more than the answer to that question. So often, I you know, I want to turn around to parents at the end of my hour to two hour discussion with them and say, so how was that for you? You know, what could I do differently? What could I do better? Like, please give me feedback, because I just want to, I just want to make this the best experience for the parents, despite the fact that it's such a difficult experience. Now, obviously, I don't ask those questions because it's not the time or the place, and I think as Adrienne was talking about, I mean, there's so many different emotions that come at different stages of the...of understanding the diagnosis and thinking about what goes forward. But, you know, I've really reflected myself on how is the best way to communicate the diagnosis to the parent. At what point in my feedback should I tell the parents that I believe that it's ASD? And I've gone through a lot of reflection on my own, thinking about when do I think the parents are best able to attend to that information and what are they attending to afterwards? One of the things I think that I work hard to do in the feedback is constantly pause and check in with families and see if they are with me. I think there's that constant, you know, leaving space for questions. If parents want to ask something I invite it at any point during the feedback, at which point I will either address it immediately or write it down so that they are sure that I'm going to come back to it later. So I think the best way that you can make sure that they're hearing you and following along with you is just constantly checking in with them to see where they're at and what they're thinking. I also am aware that if I'm talking for a really prolonged period of time, that they're not retaining everything that I'm saying. And I'll actually say that in a very straightforward way to parents. You know, I'll say I know that this is a lot of information. I know you're not going to leave remembering all of it, and please don't put that expectation on yourself that you will. Here's my number, here's my email. You will get a copy of a report. Please continue to be in touch. And I think it's really important as a professional to realize that there's just too much happening for everything to be taken in at once. And I think that that's OK, and that families should know that that's OK and that they can always come back to you in order to help to clarify and to understand things better. I think the other thing to do in order to help prepare families for receiving the diagnosis is that from the very time that I start the assessment, I feel like I'm helping to prepare them for what may come up later on in the feedback. So, as you know, there are families who come in who are very aware of why they've been referred and why they're there. And then there are families who come in who really are very unsure about why their doctor sent them to this clinic at Holland Bloorview and what we're all about. So I see it as my job from the beginning to be very straightforward with parents and to be very upfront with parents and say, this is why you've been referred, are you aware of that? Do you understand what that means? Then going through the question about ASD, what is ASD, and giving a brief description of that, and then going as I go through the developmental history and as I go through my observation, really giving parents feedback and details on what I'm seeing or not seeing and why something is a strength or why something is concerning and what it means throughout, and weeding that thoughout the diagnostic process, so that when you get to the feedback and you do have to share that there's a diagnosis, it's not something that's coming totally out of the blue at that point. It's a conclusion that I've been leading them to from the time that an assessment started so that they are prepared and see this as a collaborative process, not just me delivering information that doesn't have a basis to it. So I think part of the whole process is really setting them up from the beginning and helping parents to see from the beginning what I'm going to be doing, being very transparent, sharing my observations and helping to process that along the way, so that when I get to the diagnosis, it's not something completely new or foreign to them.
Dr. Heidi [00:43:26] I want to I want to go back to something you said Dr. Abbie. You'd mentioned, like, you know, that that pausing and taking time to make sure, like, are your parents with you? Right. And one of the things that I found personally when I'm doing feedbacks too is also to be aware that I'm with them like the reverse of that. Like one of the big learning experiences, I think, for me has been feeling like it all has to come out in a feedback session, if that makes sense, where am I giving time and space, and I'm thinking that there's going to be this reaction and I'm like, OK, so this person is is feeling some loss, is upset, there's tears and stuff like that. And then there are lots of situations when then that parent, almost like a light switch goes off and they kind of like close up shop with their feelings. And then they're like, so what do we do? Right. And I think that's when I then have to like take their cue and then they're kind of leading the train because that's not maybe the moment that they want to have those feelings and maybe I'm not the person that they want to have those feelings with.
Dr. Abbie [00:44:36] Absolutely. And I think a lot of trainees, what I've noticed is they're expecting that big reaction and they're waiting for it, and I think we have to remember our role in that situation. You know, our role is not emotion... the person who's there to provide ongoing emotional or therapeutic support. Our goal is to look at this query of ASD and to give the families what they're showing us that they need in that moment.
Dr. Heidi [00:45:02] Yeah. I want to go back for the last question to you, Adrienne. At this point, how would you describe Amira age nine?
Adrienne [00:45:12] Oh, goodness. It's now I can speak about her with such joy and excitement. And she is...she's very funny. She's very intuitive. She's really sensitive, and she's very capable. And we didn't always appreciate that. And now that some of the difficulties associated with ASD have calmed and some have resolved, we're able to see her abilities, her talents, her strengths, and we're able to see how much joy she has outside of when things are difficult and stressful. So, I mean, she still has a lot of anxiety. Absolutely. But we can start to see kind of the full breadth of her abilities, strengths and quirks and really neat things now that she's a bit older. So at this point, I like I wake up in the morning and I'm excited to interact with her and to joke around with her. And if I'm really honest, that wasn't always true. And I remember I can feel in my body what it used to feel like to go from a state of blissful sleep to waking up to her crying or moaning and how that felt in regards to like the stress that was coming from my belly up into my throat. And I just remember thinking for that split second before that stress hit, like, oh, everything's fine. And then for that reality to hit, when I heard her struggling, it just...it...it was...it was a really overwhelming feeling, and it made kind of greeting the day and greeting her really difficult. But at this point, we...she's able to manage so much better and I am able to manage so much better that despite the fact that I know that there will be stresses and there probably isn't one day without tears, we have tears, I get excited about what I know is going to go well and what I am going to learn about her, because we're starting to peel away the layers and understand parts of her that are just so cool and fun that we haven't had access to before.
Dr. Heidi [00:47:31] Yeah, I've been really lucky to have actually worked with Amira too, in the last few months as well. And so all of those things that you mentioned, like the sense of humor, like the just like thoughtful insight, she's really like a great observer and contemplater and stuff like that as well. And, you know, in the description that you've you've given us about earlier time periods, it's like I don't I don't even recognize that girl with the girl that I was meeting with, like in the last couple of months. So it's really interesting how that's changed over time.
Adrienne [00:48:05] Yeah, she's had an amazing trajectory. There were no firework moments. It all happened very slowly and steadily and there were definitely regressions. But it has, it has gone in a really amazing direction because she struggles less, but I think also because we accept her more, and we look for the things that are going well and we celebrate the things that are going well. And we don't get so bound up with the things that are difficult for her because we just know that's that's how her brain is wired, and these are the things that she, you know, she's going to need to work with. And we don't get so upset about and focused on those particular things. And we spend more time celebrating and looking for the things that make her excited and, and, and happy about her own life.
Dr. Heidi [00:49:02] Yeah, I think if I could sum her up in two words, if I had to do it, nobody's forcing me but I will, I would I would say cool and creative. Actually, when when I was working with her, she was actually talking about her interest. She's got a lot of interests. And one of those interests is listening to podcasts.
Adrienne [00:49:24] Yes. She loves listening to podcasts.
Dr. Heidi [00:49:29] She does, yeah. And I was surprised, like the variety and stuff like that. And actually talking with her and listening to her interest and her enthusiasm and how much she was soaking up from those podcasts actually planted the seed for this podcast series. So it's actually, we're here because of Amira.
Adrienne [00:49:48] Oh, thank you. Oh, my gosh. That'll mean so much to her. She yeah, she does love podcasts and and she gets out of them so much more than I ever imagined she would. So if, you know, if other parents and other people can get even a fraction of what you know, I know she gets from soaking that in, then that'll be really exciting and a testament to her. So thank you.
Dr. Heidi [00:50:12] Yeah. So we could probably talk about these topics for hours. I'm sure certain things that have come up that will lead to more conversation in later episodes. We so appreciate having both Dr. Solish, Dr. Abbie, and Adrienne sharing their perspectives on what can be happening when a child is diagnosed with ASD.
Dr. Heidi [00:50:34] If you've listened to this episode and have comments or ideas that you'd like to share with us regarding future episodes or what you heard today, feel free to emails at ASDEngage@hollandbloorview.ca.
Dr. Heidi [00:00:11] Welcome to ASD Engage a podcast for families of children who are currently waiting for an autism spectrum disorder or ASD assessment. I'm Dr. Heidi Keifer, a clinical child and adolescent psychologist.
Maureen [00:00:24] I'm Maureen Mosleh Psychometrist.
Shawn [00:00:27] And I'm Shawn Brumby, also a psychometrist. We work on teams that assess children for ASD at Holland Bloorview Kids Rehabilitation Hospital. Each episode, we will present a topic that reflects concerns brought forward by families we work with.
Shawn [00:01:01] Welcome to Episode four of ASD Engage. Today, we'll be discussing communication and specifically talking about some of the challenges parents experience with their child's ability to interact with others. Maureen and Heidi will be talking with Ian Roth, a speech language pathologist, and Dr. Jessica Brian, a psychologist and clinician investigator. In addition to working independently in their respective fields, Ian and Jess also collaborate in numerous research projects as they relate to communication in young children with ASD. Here's what they had to say.
Maureen [00:01:37] So where is she going to start with you, Dr. Brian, could you tell us a bit about what you do at Holland Bloorview?
Dr. Jess [00:01:44] Well, I'm a psychologist, as you said, and I sort of wear two different hats here. So I have a clinical side to my work and I have a research site to my work. Most of my clinical work involves diagnosis, often with young children with autism, but all the way up into teenagers as well. And my research really focuses on very early identification of babies and toddlers who might be at risk for developing concerns, who may end up with the diagnosis of autism, as well as intervention to support those kids as they're learning.
Maureen [00:02:18] OK. All right. Now, you've been in the world of ASD for quite some time now. So tell us how you got into this.
Dr. Jess [00:02:27] I have been in this field for quite some time. Thank you for noticing. Honestly, I, when I was a teenager, I had a family friend who had an older sister who had a young child. And the child was sort of around two and was starting to. It was starting to become apparent that he had communication delays and language delays. And that woman actually hired me on as sort of a nanny for this little guy. My first job was to talk to him all the time. And we sort of developed a really strong bond and I really enjoyed interacting with him. And so I spent several summers living with the family when he was quite young. And he did end up receiving a diagnosis of ASD and sort of that, I was sort of intrigued from the beginning and that really solidified for me the interest in autism.
Maureen [00:03:21] And you just keep going since then.
Dr Jess [00:03:22] I have just kept going since then.
Maureen [00:03:24] There's no stopping you now?
Dr. Jess [00:03:25] No. Y.
Maureen [00:03:28] You mentioned that you're involved in research, Dr. Brian, Jess, and our second guest actually collaborates with you often in some of the research that you do so, Ian, I wonder if you could tell us about your role at Holland Bloorview and the work that you also do within the community.
Ian [00:03:44] Sure. So currently at Holland Bloorview I'm working with Jess. So Jess has co designed the Social ABC's program, and so I'm working in a research project to look at how well parents are able to learn the Social ABC's program, which is a parent mediated intervention for young kids with autism spectrum disorder or with social communication challenges. So I'm working as a parent coach, helping the parents to learn the strategies and coaching them to use those strategies with their kids.
Maureen [00:04:16] Okay. All right. And we've also heard that you do quite a bit of work within the community. Can you tell us a little bit about that, what that looks like?
Ian [00:04:23] Sure. So I've been working also with a lot of families over the years who have kids who have autism spectrum disorder. I've done a lot of parent training up until now, working as an instructor for the head-in center, teaching The More Than Words program. I also am working with the neonatal follow up population and helping parents whose kids are developing differently in terms of their social communication skills to learn some of the strategies that might help them to improve their social communication development.
Maureen [00:04:58] Okay, terrific. And so some of our listeners might not actually know what a speech language pathologist does. So maybe you can help us better understand that
Ian [00:05:07] Sure. The title is a bit long. So we're working with all aspects of communication. So a speech language pathologist is somebody who assesses and treats anybody with a communication disorder. So that could be somebody who is developing their communication skills differently, as in autism spectrum disorder. It could be somebody who has acquired some difficulties with communication, say, after a head injury or a brain tumor or something like that. We work with children. We work with adults. And the whole idea of speech and language being different is very important, right. So speech has to do with the production of speech and how somebody sounds when they're speaking. Language has to do with the words that are used and how they're used, how well they represent what they're trying to say. And then, of course, your social communication and social communication has to do with a child's interest in or a person's interest in communicating and how much they see those opportunities around them to communicate.
Maureen [00:06:12] Okay. Right. So I kind of want to talk a little bit about the speech language component that you were just talking of. A lot of children come to our setting with delays in their language. And we know that children's language can develop so fast within the first three years that we often see. So what are some key milestones that happen in that time that parents might be wanting to look out for?
Ian [00:06:40] So one of the first ones is just attention to a person, right. So in the first few months of life, we expect babies to start to notice their parents and recognize their parents in a different way. So parents, especially mothers who are often holding their babies, will start to notice that as they speak, their child starts to look up at them. We want to see that babies are starting to notice their parents and to react to them in a unique way, in a way that they wouldn't necessarily react to another person's voice. So that's a really, really early milestone. We want to hear a lot of babbling early on so that babies are starting to make different sounds and and parents are starting to recognize that there are different sounds and they sometimes have different meanings, even different cries, in fact. And then as as words start to emerge, we hope that words are going to emerge somewhere around the first birthday. And we expect that, you know, after the first word is heard, that we're going to hear other words coming soon thereafter. In terms of getting words into longer utterances, we usually expect kids to be able to put two words together once they have learned to say about 50 to 100 words.
Maureen [00:07:57] Alright. Excellent. So when there are delays in language, what might some of the causes be?
Ian [00:08:08] That's a really good question. I mean, there are so many different possibilities to why language might be delayed, right. So if all other aspects of communication are developing as expected, but language is delayed then we want to look at how well are they understanding what other people are saying? How well are they hearing what other people are saying? So is there any difficulty with their hearing ability, in which case they're not understanding, in which case they're not being able to to use words in the same way. Some kids understand very well, but their expression develops a little a little bit later. One of the things that really does help kids to to communicate better is identifying those opportunities around them to communicate, the same way that anybody who's learning a new skill, whether it's learning to play a musical instrument or something else, you get better at it the more you practice. And so for for young kids, we want them practicing communication right from day one, even if that doesn't include words, even if that doesn't include gestures, we want to see that they are engaging in interactions with people where they're paying attention to people, where they're they're responding to people and even getting into a bit of a back and forth, right. So over time, we want to to see that that practice is continuing and that practice is leading to more communication, more frequent communication, but also more sophisticated communication.
Maureen [00:09:35] So it's quite complex. And it also includes you having to take into consideration the environment as well. It's really quite important. OK.
Ian [00:09:44] Absolutely.
Maureen [00:09:45] A lot of people saying that communication's just related to speaking, but you kind of touched on a few other things. What else is involved in communication? What are you thinking about when we say communication?
Ian [00:09:58] I'm thinking about people mostly, right. Communication only happens between people. So a child who is practicing their words by themselves that's great, they're working on their speech. But that speech is not enough to qualify as communication. It's only communication when there is a message being sent from one person to another. So that said, communication happens without words a lot of the time, too. So kids might be looking in a certain way or gesturing in a certain way or moving someone else's body in a certain way, there's lots of ways that young children especially are going to communicate even before they they use speech or even after they've used speech, but sometimes without speech, right. So communication is is absolutely it's sending a message that somebody else understands to that person.
Maureen [00:10:49] With or without language?
Ian [00:10:51] With or without speech. Yeah.
Heidi [00:10:53] So that kind of segways nicely into moving back to Dr. Jess then. We've been dealing with thinking about speech, language and communication. And one of our earlier episodes, Dr. Sharon Smile described that social communication is one key part related to an ASD diagnosis. So then is all communication social?
Dr. Jess [00:11:19] That's a really good question. I mean, I think I would argue that all communication is social. I'm looking at Ian to see if he agrees. And I think part of the reason that we sometimes make that distinction and talk specifically about social communication is to really highlight what some of the concerns might be in a child who goes on to receive an autism diagnosis. And so as Ian mentioned before, when we think about communication, we do think about two people sharing messages back and forth. When we use the term social communication, we really want to highlight that the function or the purpose of that communication is for social sort of has a social piece to it. So you may think about some forms of communication one could argue, although they they involve people so they're social, they may have sort of a more functional outcome, meaning like I'm asking someone to do something for me or telling someone to do something for me. Whereas when we think about social communication and why we use that term is we really want to highlight that purpose of communication that has a social basis to it. So kind of wanting to connect with people, finding ways to interact in a sort of, in a way that builds relationships more than sort of just having needs met.
Dr. Heidi [00:12:47] Hmm, interesting. So what would be some examples of communication that doesn't seem to have a purpose then?
Dr. Jess [00:12:56] So, again, you know, I think we, I would love to hear Ian's take on this too, but I think when we when we think about sort of communication challenges, let's say, in kids who have specific challenges in those areas, we may see kids who have words and have developed speech and may be using those words correctly, their pronunciation may be great, they may, in fact, be quite sophisticated in terms of the words they use. They may be appropriate to the context, so a child may be very good at naming objects, labeling certain types of dinosaur, let's say, for example. But if that child isn't using those words to build a relationship with someone else, that's where we might say that, you know, they're developing their language fairly well, but they're having difficulties in that domain of kind of connecting socially with their communication through their communication.
Dr. Heidi [00:13:58] So then when you are doing an ASD assessment with a child, what are some of the specific things that you might be looking for that are either present or absent in that social communication?
Dr. Jess [00:14:09] So, you know. One of the things to really consider is, is that sort of distinction between words and other forms of communication. So if you really think about words, what we're looking for are children who use words in a way that is sort of directed to another person. So that may look like they're either looking at the person that they're sending, talking to, sending the message to, or at least they're orienting their body in the direction of that other person. And so, you know, same with other forms of communication. So if an individual is gesturing or pointing, you want those those gestures to be directed to somebody else. So it's sort of like really thinking about what the purpose was for the child in doing that thing. Was it to deliver a message to somebody else or was it just sort of practicing on their own? And some of that practice, as as Ian mentioned, some of that practice on your own is really important. And certainly early in development, we hear lots of, you know, kids, little babies in their crib who babble and they're practicing with their sounds. And that's wonderful. But really, what we're looking for in the case of sort of concerns around social communication disorders or autism specifically would be kind of that disconnect between maybe an ability to have some words, but not to really direct them to somebody else.
Dr. Heidi [00:15:34] And so I mean we described social communication as one aspect of ASD, how might social communication tie into other behaviors that we might see in ASD?
Dr. Jess [00:15:46] I think probably one of the the main links might be between that sort of difficulty communicating and then having some sort of disruptive behavior or behavior that's considered to be disruptive. I think it's very important to really understand if a child engages in behavior like, let's say, throwing a toy or hitting somebody, what is the purpose for that child of using that behavior? And sometimes it may be that they don't have another way to get their needs met or to communicate what's going on. And then also, you know, just that frustration of not being able to communicate may lead to sort of some behavior that we would describe as disruptive behavior. So we do see this kind of behavior in autism, and in many cases it can reduce as children get better ways to communicate and find ways to sort of have their needs met in more prosocial, let's say, in more prosocial ways.
Dr. Heidi [00:16:46] Yeah, I guess maybe for both you, Dr. Jess and for Ian, we were talking to a family earlier on in the week who was talking about their child's language delays and initially, like this child went on to get diagnosed with ASD, but initially they were feeling like, you know, their son's language was amazing at home, he was communicating, he was interacting, and then it was only when he went to a different setting, a daycare or school, that his language seemed to fall apart. And all he did was repeat, I think, cement truck. They were talking about cement trucks, cement truck, and they'd never seen this before. And so I wonder also about that idea of like adaptability in language, is that something also that you're paying attention to or something that we should be noticing in young children too?
Dr. Jess [00:17:37] Maybe I'll start and then I'd love to hear Ian's take, too. But I think one of the things that we see a lot in all kids, and it may be pronounced in kids with ASD, is some sort of variation between the skills that you can exhibit in one context or one setting versus others. And we do know that when children feel more anxious or more uncomfortable, skills can seem to sort of decrease right. So it's not as if that child is losing those skills, but as we, many of us who experience anxiety in some context may experience, you sort of can sometimes struggle to find the right words or a sort of whatever you're really great at you may not be as comfortable or as proficient in all different contexts, right. So I think for a lot of the kids that we work with, the different environments can really create different levels of stress versus comfort, and then when kids are more comfortable, they're just much more likely to exhibit the skills that they have, and I think particularly for kids who are struggling or maybe sort of in the early stages of learning, that those skills are a little bit more variable or even more vulnerable to kind of the differences in the context or even sometimes mood, time of day, as well as sort of who's in the environment can make a big difference.
Dr. Heidi [00:19:03] Yeah, that's interesting. Yeah, because I think sometimes parents kind of feel like I feel a little crazy because I can't like I see this at home, but then other people are seeing something different. Do you find that as well too Ian?
Ian [00:19:16] Yeah, absolutely. And I think when we see kids who are developing their social communication skills in a typical fashion, the language that they're developing at that time is extremely generative, right. They learn the word for truck and they learn the word for big. And they start sometimes say big truck and sometimes they say big dog, and sometimes they say big tree, and they start to move words that they've learned around. At home, you know, you're going to see that as completely typical. And for a child who's social communication difficulties, social connection development is happening in a less typical way, sometimes what we see is that they're not generating language in that same way where they're manipulating words and moving them around, but rather they learn whole phrases at a time and or whole words that go along with what they see at home, and it's very comfortable, it's very repetitive, but it fits, right. And it doesn't seem that different until they're taken out of that really familiar environment and put in a different one, and they don't have those pat phrases or those whole chunks of language to use in that new environment. And they look much less proficient, even though at home it seems like everything kind of fit.
Dr. Heidi [00:20:31] Interesting. Yeah. So, Ian, you had mentioned, you kind of touched on it earlier, thinking about key milestones and paying attention to other people, and Dr. Jess like when we are doing ASD assessments, oftentimes the idea of joint attention comes up specifically, and that's a really crucial building block for social communication. But parents might not really know what that is. So can you explain what joint attention is?
Dr. Jess [00:20:58] So there are a couple of different pieces to join the attention, and one, we've talked a little bit here about attention and sort of paying attention to people is a big part of joint attention. And really, when we talk about joint attention broadly, we're talking about sharing your attention about something with somebody else. So we, you know, we can think about how a child pays attention to things in the world. So do they notice, for example, when a dog walks by or an airplane flies overhead, and that would just be sort of basic attention, so do they follow and notice things in the world? It becomes joint attention when they're sort of that, again back to the social motivation, when there's that motivation to pull somebody else in to experience that with you. And, you know, there are sort of some very specific things we may look for. But one of the sort of the most common example of that in toddler development really would be noticing, you know, you're maybe at the park with your toddler, they notice a dog walk by, they might reach out their hand and point or they might say doggy, or they might say, woof woof. And ultimately then they would typically turn back to you as their parent, as if to say, do you see this cool thing that I see? So it's really that kind of that social connectedness that many, many toddlers really seem to crave so, so easily and so early in development, that we talk about when we talk about joint attention. So bringing in someone's attention to see the thing that you're seeing and enjoying together.
Dr. Heidi [00:22:38] Yeah, yeah. In our last interview, we spoke to a parent who described her daughter as very independent when she was younger. And that was kind of the label she kind of put on her before the diagnostic process where her daughter was diagnosed with ASD. And before she was diagnosed, she noticed that when her daughter started to walk, she tried to look into her eyes to connect and share that excitement of the moment that her daughter was just starting to walk. And her daughter didn't reciprocate. And that really stood out to mom as like, OK, we're not sharing this experience together. And it brings up the idea of reciprocity, something being reciprocal, right. And how would you talk about reciprocity with parents?
Dr. Jess [00:23:32] First of all, I love that example. I think it's such a powerful example. And we hear that kind of observation sometimes from parents, even sometimes it can be a couple of years later, right. And thinking back, there was that moment where I would have expected my child to connect with me about this thing, whatever it was, we're having a giggle game, we were playing peekaboo, walking, you know, whatever the example is. And sometimes in hindsight, parents do reflect back that that connectedness seemed to be different for a child who goes on to have autism. Sometimes parents don't notice it at first, particularly if they haven't had other children. So kind of knowing how much a child should (I put quotes around that) should look at you when they're sharing excitement, I mean there's so much variability across children to begin with that there are no sort of there are no rules about when these things come into play in a very sort of concrete way. But oftentimes we'll hear it from a parent who may be interacting with a second born child or a later born child who's now eight or nine or 10 months old and doing some of these things that seem almost so natural for them. And in hindsight, those parents say to us, in hindsight, I realize that this little one who, you know, my older child who has autism really wasn't doing those things in quite the same way as his or her younger sibling is. But I think that that sort of that reciprocity is really around kind of, again, socially connecting with somebody else and kind of wanting to pull someone into your world. So we talked a little bit about joint attention, which is sort of pulling someone to share something with you that's maybe off in the distance. But there's also that shared those shared experiences, so again, I think that example that the mom gave about sort of feeling like her toddler should have or might have wanted to share that experience with her and noticing that it wasn't there is such a really salient example of what we hear from families about just feeling like some some connectedness wasn't quite what a parent would have expected. Often it's very subtle like this, right. So I think that the other piece to really keep in mind is that lots of parents don't experience that because it's so subtle. Raising a child is exhausting and stressful, and takes, you know, so many resources out of all family members that sometimes these subtle things are really easy to miss, and families, it's hard for a family sometimes to look back and almost, you know, we hear from families who say, I wish I had noticed this earlier. And often it's it's impossible to have noticed it earlier, right. So these are things that can be very subtle, and families are juggling so many things that they shouldn't they shouldn't feel like they needed to have caught that earlier. But that's part of what some of our research is trying to identify is are there some really sort of key developmental things that go differently in kids who end up with autism? That we can, you know, help future families down the line to be watching out for those things. And the main goal of watching out for those things is to start finding ways to enhance a child's development as soon as possible. So we know that the sooner that we can help families to support and sort of foster their child's development, we do think that we sort of have, we have a better opportunity to make, to help that child make gains if they start sooner, but we also know that supporting kid's development across their lifespan is really important, so, you know, we put a lot of stock into early identification and early intervention and early supports, but those supports can be valuable at any time.
Dr. Heidi [00:27:50] And it's interesting. So the example of the parent that I described right, taking first steps is around like first you know birthday and stuff like that, and then Ian you were mentioning, like being having that attention so that reciprocity, how early are those signs of reciprocity showing up?
Dr. Jess [00:28:10] I mean, one of the examples that Ian gave early on about sort of language development was about babbling. And we do, we, you know, again, these are subtle things and we don't expect parents to necessarily notice them, but we do find that quite early on as soon as kids start babbling, babies start babbling, they do usually develop what we call reciprocal babbling. So kind of babbling in order to pull someone else in socially. So, yes, they're practicing their sounds and they're doing all sorts of play with sounds that and some of it is self directed, and it's just kind of learning and mastery for its own benefit, which is wonderful and really important, but a lot of that very, very early babbling, so as soon as we start to hear those kind of sounds that children are making on purpose intentionally, around that same age they usually are starting to want to either see a smile from a parent when they make that sound, or if the parent makes a sound back they'll take another turn, and that very early turn taking does seem to sort of in typical development, seems to come into play before the first year and before those first words come, you know, in the kind of seven or eight month range. And again, there's so much variability and there's so many reasons that children may not hit those milestones when we expect them to. But usually when kids start to play with sounds, they start to use them socially around the same time.
Ian [00:29:42] And even just that idea of looking to the parent to, you know, as Jess' example so, you know, the child is looking at the parent for kind of a smile or a reaction or something like that, it speaks to how the child views the other person, the parent or other family member. So what is that person to me? And when we see social communication at different stages of development, often in a very, very early form of social communication, it's just to smile and gaze. But when kids are developing differently or developing their social communication skills differently, sometimes they see the parent as just somebody who can get me the stuff that I can't get myself. And the role of that other person is defined much more narrowly for a child with social communication difficulties. And so that reciprocity is much harder to achieve because the child may not view the parent as somebody who's got the ability to enhance other situations, they are the stuff getter and that becomes how they define that person. And for a parent, that's really difficult to take, right. That here we are, we're supposed to be smiling at each other and bonding, and, you know, enjoying this moment together this really important milestone, and the child hasn't developed the ability to appreciate that with another person.
Dr. Heidi [00:31:05] Right. That's interesting. I like that phrase the stuff getter. I'm sure a lot of parents do feel that way, regardless of their child's development. But we, I guess a couple of things, so when we were getting ready for this particular episode too, thinking about social communication and language, right, we were reflecting on something that Dr. Smile had been talking about in an earlier episode about all the checklists that you get, and a lot of the checklists around language and stuff like that, where it's just kind of like, is it present or is it not present? Is eye contact there, are words there and stuff like that, but then, Dr. Brian, you're talking about like those like subtleties, right. And sometimes the subtleties are what reveals when there might be difficulties going on.
Dr. Jess [00:31:52] Yeah. I mean, I think, you know, I think that captures it, that the subtleties and the kind of nuance differences tend to be what's more informative, often very early in development. Certainly when kids are missing big milestones, that's often a good reason to go and get further assessment or to consult with the doctor or daycare staff. And many, most parents do see those, right, those milestones are kind of in everybody's face all the time. I think, you know, the challenge with those milestones is that those concrete ones well, all of child development is kind of really variable from child to child. And we know that often it's very stressful to be a parent of a young child, particularly the first time round, and so those milestones are helpful, really helpful for kind of catching the big challenges that may need support. But sometimes they also lead to a bit of stress. So, you know, and they change over time, which I think is really hard for families, so it used to be the case that kids should be walking by 12 months, now it's a little bit stretched out to 16, 18 months. So it's important that we don't forget that there is variability over time in terms of what children are exposed to and what expectations are, and variability over children and individuals and what sort of motivates different kids. So back to that example about the little one who was sort of walking and maybe not connecting her gaze. Sometimes, you know, for kids, when they're mastering one skill, it's hard to exhibit the other skill as fluently as they might have otherwise. So, you know, I would hate for parents to sort of hear this and and notice that, oh, my child was, you know, looking at me yesterday, and then when they were on the monkey bars, they didn't look at me, and this means there's a big concern, because sometimes when you're trying a new thing, there's other things that may be more natural for you kind of go on the back burner for a little bit. So those milestones, I think the challenge with those concrete milestones is they don't really help us think about the integration of skills. And oftentimes for diagnosis of autism or ASD, what we're really looking for are the integration of these subtle, more subtle skills as being kind of coming online, and so sometimes I think about not necessarily an age at which something should happen, or an example of when something did or didn't happen, but sort of more of an overall picture of most of the time when your child makes sounds does he or she tend to look in your direction? Right. So it's not kind of a checklist of does he always look at you, or does she always look at you, or when she makes or how many sounds does she make, or how frequently, or how old was she when she made her first sound? But it's more about that overall sort of global picture of most of the time when your child is saying things do they seem to have a social purpose which which is hard to put in a textbook right. It's hard to put on a checklist. And I think that's what, those are the kinds of things we're really looking for, particularly early in development, where the science might not be as obvious.
Dr. Heidi [00:35:18] And so it's not only like hard to put in a checklist, but it's also hard to notice like if you're just seeing the kid really briefly for, like, a regular checkup to, right. Just to add a question that I have for Ian, we see a lot of parents who come in and their children have language delays and we might be querying ASD, and then we hear, oh, boys develop language later. What do you say to that or what do you say to parents?
Ian [00:35:46] Generally, that's not the case. There might be subtle differences between kids. Of course, there are subtle differences between kids. But in generality like we don't see that boys are developing skills later. The milestones are essentially the same for boys versus girls across most communication skills. So, yeah. So if a parent is concerned about something, they should have it checked out regardless of what gender the child is.
Dr. Heidi [00:36:17] I think, I feel like you've just dispelled a huge myth right there. You were mentioning before you were talking about when we're discussing reciprocity and sense of connectedness, and sometimes parents becoming the stuff getter, I guess maybe directing it first to you, Dr. Jess, when there are difficulties with that reciprocity, how can it affect the bond or sense of connectedness between a parent and their child?
Dr. Jess [00:36:46] That's such an important question. I mean, I think that if we think about so early in development, so as soon as children, if you think about, you know, Ian was using the example before of a mother nursing her baby. So if we think about sort of even the physical space between when you're nursing, between your baby's face and your face, that's kind of the exact distance at which babies can start to sort of focus at a particular point in development. So people's faces really are one of the most important early things that babies look at and see and use to make sense of the world and kind of develop those bonds. What we hear from some of the families that we work with is that similar to the mum that you're referring to is that, you know, thinking about how important it is, let's say, for parents to when they look at their child and smile, to see their child smile back at them. And again, you know, we can think about it biologically if we want or sort of in terms of sort of social development, but even biologically, new mothers are exhausted and worn out and looking at your baby increases your oxytocin in your brain, which makes you feel good, right. So from a biological point of view, when your baby smiles at you, it's probably really adaptive because you're like, wow, I love this little person. And you feel better, and it gives you the energy that you need to sort of manage the stressors of being a new parent. When you look down at your baby and they don't smile at you, again it may be so subtle and a parent may not know that my baby is at an age where they should be able to smile back at me. But that parent isn't getting that sort of positive feedback from such an early stage in development. So, you know, it's very it's almost impossible to imagine kind of what those what that sort of cyclical long term outcome of that is. But if you think about how important it is for a new parent to receive those smiles and that connectedness from their baby in order to sort of manage all the difficult things about dealing with babies, when that balance is set sort of against receiving those positive feelings, I think it just must be extremely difficult to then sort of manage with all of the stressors. And if you add to that some of the stressors that may also be associated with with having a child with ASD, so the starting to worry that maybe they're not babbling when the checklists told you they should be babbling, and you're so you're feeling distressed or stressed out about those things and you're not kind of having those positive feelings returned to you in the way that many parents get, I think it just builds so much added stress and distress for families. And, you know, the parents that we work with continue to amaze me in terms of how resilient and strong they are to keep going and keep loving, you know, we all love our babies, right, and so that's not that's not what surprises me, but sort of to not be necessarily getting that positive feedback quite so easily, and then to still just keep connected and motivated to work with whoever can help them kind of help their baby to develop those skills.
Dr. Heidi [00:40:47] I think yeah, I mean, you highlight, like, how important that is, right. And sometimes, like I mean, it sounds like it could be kind of deflating, kind of defeating for a parent when they're not having that sense of connectedness in the way that they perhaps expect right, or that they're kind of pulling for in some ways. But it's interesting because, again, back to the example of the toddler walking right, mom's description of her, she develops a narrative that still resilient. My daughter is independent right. And so then she kind of adapts to then OK, this is what I'm getting from my child and this is how we'll build the connectedness this way.
Dr. Jess [00:41:31] And I mean, I think that captures it. I think that the resilience of parents is, of all parents really, is remarkable because babies are really difficult. But, yeah, finding those kind of special things that work and that what we see a lot of is creativity in parents, too, so maybe I can't get the smile the easy way, but I can get it this way. And so many parents have developed these kind of amazing strategies for pulling in that getting that connectedness and not even realizing how hard they've been working to get it. But maybe, you know, it's this silly song and dance or this funny little noise I make or this little quirk that I do that gets my little one to smile and laugh at me, and not necessarily even knowing how easy it might be in other cases and how hard they're working in this case. But I think you're right, that resilience and that just creativity and what we see is this amazing match between parents finding the thing or the things that are sort of the magic, the magic piece that helps their child to connect with them.
Maureen [00:42:44] So I kind of want to pick up on what you were saying, because we see a lot of the parents that I've seen that have come in and who would gain the narrative that they use is that well it's just upsetting, he doesn't want me to interfere with his play, he prefers to play on his own. Like what kind of guidance can you give some of these parents when they don't know how to try and be a part of their child's world? And so they do back off and it's really quite heartbreaking to see because they want so badly to be in that world.
Dr. Jess [00:43:15] Yeah. I mean, I definitely see that. I think the first thing that I do say to parents is because sometimes the strategies that we recommend are around sort of finding ways, helping families to try new things and sort of create different ways to connect. I think that the first thing I would say to families is that if you've been in a pattern where you back off because your child gives you the message that they want you to back off. The first thing is that that you're being a responsive parent. So you're reading your child's cues and your child's cues were telling you I want to do this by myself. And so I think sometimes when we work with parents and help them find ways to get in, they wonder, oh, should I have done this more to begin with? And I think it's a really important message to remind parents that the reason maybe they've been backing off is because they were responding to the child's cues in a way that's really adaptive and lovely and sort of well-informed, right. And with kids with ASD, we need to just sort of work around that a little bit. So finding ways some of the most successful ways really are to be silly and playful, to be gentle with kind of how you get involved. We'll often sort of practice with parents little ideas about sort of a child who, let's say, loves playing independently with a set of cars or something. There might be a way that you can just roll one of the cars in a funny way and then sort of pull back again. So kind of making it really clear that you're not there to ruin the game, you're not there to sort of change the game too much, because we know that sometimes kids with ASD really like the game to be exactly the same way every time, and that's part of why it's difficult when other people try to join because other people always change the game, right, just just by virtue of being there. So we help parents sometimes think about ways to become involved in tiny, small little steps that ideally make the game more fun. Sometimes it won't feel more fun right away, sometimes the kids just need a little bit of exposure and practice like, oh, it is kind of funny when daddy does that, it is kind of funny when mommy does that, and sometimes it's just really slow and gentle, kind of taking a turn and then pulling away again so that it doesn't feel too overwhelming. But honestly, there are some activities, too, that may not be the best place to start for certain kids, right. So there may be games that are so special a certain way that I do it and that may not be the place to start in terms of trying to get involved, there may be other ways you could, you know, show new things to your child that maybe they haven't seen before that you think might be similar to the game they love, but they won't have that sort of intense kind of vested interest in having it happen the same way. So kind of redirecting and sort of trying new things, showing them this is really fun, too, and ideally showing how the involvement of another person kind of increases that fun.
Maureen [00:46:37] Yeah, yeah. And a lot of persistence.
Dr. Jess [00:46:40] Yeah. Yeah. And it's so hard when that when the persistence is met with what feels like the child giving you the message I don't want you to be part of this right like that's so hard because you're putting in a lot of energy and that's the feeling you get. That's really that is discouraging.
Maureen [00:46:59] Okay, that's great. You gave some great tips.
Dr. Heidi [00:47:02] And I mean, it sounds like that also parallels a lot of what you'd be trying to promote in speech and language interventions as well. It's interesting, I've had some parents come in for an ASD assessment and they've gone to speech and language and they feel a bit confused because they're like, oh, the speech and language pathologist was just playing with my kid. How is that helping them to learn to communicate?
Ian [00:47:27] Yeah, no, I think that that's an important bit of education that we have to do when we start to work with families to let them know that play is how we help their communication develop. Right. So if the whole idea of social communication is recognizing those opportunities to communicate or to interact, that's going to happen mostly through play for a child. A child is playing for most of the time that they're awake, right. So if we want them to enjoy other people, to see the value of interacting with other people, it's got to be largely on their terms. And so we want parents or clinicians or teachers or daycare staff or whoever is interacting with that child to do so in a way that as Jess was saying shows the child that fun gets you know, things become more fun when another person joins, somebody else has a really good idea, somebody else makes a really funny sound, somebody else is going to make something happen in a way that I have never thought of before. And that, again, is just selling the idea to the child that, oh yeah, other people are really valuable. And then they become much more sophisticated in their social communication because they see these other people as more than just the stuff getters, right. These other people are there to enhance my otherwise fun activities, they're making them even better. Or if I tend to, and a lot of kids on the spectrum are going to revert to the same activities day in, day out, because that's what started off being fun for them, and they're kind of wired to want to do things in a similar way over and over again. And over time it becomes less exciting for them, and but they do it because, again, they sort of crave that sameness, even though the excitement has kind of diminished. A parent or another person who comes into that activity and shakes things up in a way that the child hadn't thought of before, all of a sudden kind of blows the child's mind and now that child has a reason to pay more attention to that person and sees that person in, whether it's a parent or somebody else, in a way that maybe they hadn't appreciated before. And that, again, gets them thinking about interacting for different reasons, more often in different situations.
Dr. Heidi [00:49:41] So unfortunately, parents don't get like a manual on how to be like this, fun person who is more than just the stuff getter, so like, how do you help parents be that kind of fun, silly, goofy person?
Ian [00:49:56] I think it starts with what Jess was saying, right? Like to be fun, to be smiling, to persist and to really, I think it's really important to notice a) what is the child doing? What do they, what do they gravitate towards, and then to really dig deep into that why? Right. So a child who loves fire engines, why do they love fire engines? Is it because their vehicles, in which case all vehicles with wheels should be equal? Is it because they're red? Is it because they've got lights on top? Is it because they make a sound? There's so many different reasons why a child might like the thing that they like, if a parent starts to figure out why they like that thing, they can start to take that component and extrapolate it, put, you know, use it with other activities, and again, it shows the child that there are other ideas that might be just as exciting as the thing that I've been doing day in, day out, but I didn't know it existed before. And that, again, it gives the child a little bit more awareness of what else is out there and the value of another person who has these independent thoughts, who's helping me to enjoy these interactions.
Dr. Heidi [00:51:04] Yeah. And Dr. Jess, bbefore we came into record this you were talking also too just about like a parent experimenting, right, and sometimes it works out and sometimes it doesn't. Can you tell us a little bit about the Grover story?
Dr. Jess [00:51:21] So first, I'll talk about experimenting and then maybe I'll tell you about the Grover Story.
Dr. Heidi [00:51:26] Sure, fingers crossed.
Dr. Jess [00:51:28] No, I think experimenting is really important and I think, you know, what Ian was talking about in terms of helping parents really dig down and identify what features of a toy or activity a child likes are definitely the place to start. The other side of that is then also being a really good observer about the impact that you're having on your child. So that kind of hypothesis testing, let's say, so if you have a child who loves fire engines and you wonder, is it because they're read, is it cause they make noise? Is it because they're vehicles? You can sort of test those hypotheses by showing your child all those different things and see what they like. But sort of, and in a similar vein with kind of just your own playfulness. Sometimes parents will accidentally happen on something that that their child loves. And so if you're kind of really vigilant and watching your child's facial expressions or kind of their body movements, their eyes, you'll note you can notice when, you know, when something you do creates that response sort of results in that response from your child. So it may be something as silly as, you know, you may be face to face with your toddler and feeding them, and then something happens; the pudding falls off the spoon, or you sneeze, or your chair gives out, like something silly happens, and you may see that that generates a particular response, like a really happy, excited response in your child. And that's the kind of thing that you can continue to do, right. So this got really an excited, an excited response. So, so, we do, so in some of our interventions, we help families to also really try new things, experiment and also be ready for those accidental things that come up that create that sort of generate a really fun response out of the child and then sort of to to keep those going.
Maureen [00:53:29] That's so concrete to me though. I think right after you having seen that, I have visions now of going home and saying, oh, look, it is the red fire truck, but look at all these other red cars. Now, I have something that I can actually go grab them, introduce, oop nope, it's not the red, but I have some other flashing things, like, I feel like I have a strategy now. I think that that's really helpful.
Dr. Heidi [00:53:53] Yes. Yeah. And then it's like trial and error.
Maureen [00:53:58] And a place to start, a really good place to start.
Dr. Jess [00:54:01] Yeah. And I think it's really I think it is both those pieces. It's that experimenting and then watching for your response. So, so you're trying all the different things that might be what really gets your child's interests, watching to see what it is that really sparks that excitement, and then kind of building, building from those things.
Maureen [00:54:22] So now the Grover story?
Dr. Heidi [00:54:26] So now your own experimentation.
Dr. Jess [00:54:28] So the Grover story. So I think it's just an example maybe of um, I've been accused of being an eternal optimist, and so maybe it's true or maybe sort of the idea of sort of finding the silver lining in things that may not be, start seeming optimal. So in high school, I was teased by a young man for having a voice that sounded a little bit like Grover. And so I you know, I suppose that that could have hurt my feelings, but instead I kind of used it to my advantage and developed a little bit of a good Grover voice, which I probably won't do on this podcast. But it actually worked really well in terms of developing that bond that I talked about with that first little boy I worked with with autism because he loved, loved, loved reading. And we would read for hours and hours and hours, and we were, we we really bonded over reading. And then just, I don't know, by accident, we came across a Grover book and I was feeling relaxed and comfortable and safe, and I just tried my Grover voice and it really up'd the fun factor for this little guy, and he loved it. And honestly like it, it we already had a bit a bond, but it really kind of solidified that bond, and all he ever wanted from me for many years was for me to do my Grover voice and to read this particular book with that particular Grover voice, and then, of course, his his parents were amazing and bought all the different Grover books they could find. So, you know, I probably did my 10000 hours of practice of the Grover voice, but it really did, it was an example of sort of taking taking our relationship to the point where it was super, super fun, and it was then we were able to use it in all sorts of contexts. So when he got really distressed because the swimming pool was closed and he wasn't expecting it to be closed and he loved to swim, I could sort of help him get out of a real stressed out cycle of distress by bringing in the Grover voice. So, you know, there are, there, that was just kind of a fluke or a happenstance that I discovered that he loved it, and it really was something that we were able to build years of of fun and kind of skill development with.
Dr. Heidi [00:56:48] Thank goodness for Grover. For both you, Dr. Jess and Ian, do you find that there any, like, common misperceptions that parents have about their social their child's social communication?
Ian [00:57:04] I mean, for me, I hear a lot of social communication is well, he is social, right? And it's absolutely true, and as Jess said earlier, I think all communication is social. Not all speech is communication, but all communication, meaning all messages sent to another person are social. But there is kind of a a dimmer switch of social communication skills that can be turned on or off or not on or off, sorry, up or down, depending on how well developed those skills are, right. And so for me, I think that the term social communication sounds like this kind of very specific thing that is very abstract, I think it's very hard for people to understand, and as soon as they see a child go up to another person, he is social, therefore, that's not an issue for him, and really what we're talking about is a whole bunch of different skills that need to develop and to be coordinated with one another. And that's a really hard thing to, I think, conceptualize for people who aren't speech pathologists or psychologists.
Dr. Jess [00:58:18] Yeah, definately. What about you Dr. Jess?
Dr. Jess [00:58:22] I mean, I think it's similar to what Ian was talking about, where I think about social motivation. And I think that sort of if you're thinking about common misperceptions, I think, you know, I still hear from from professionals and from families that a child may be perceived not to have autism spectrum disorder because they're socially motivated, and that's sort of almost would would mean that it can't be autism. And I think, you know, back to Ian's point, that it's it's not, we see lots of kids with autism who are very socially motivated. So kids who love to come up to other people or love to engage with other people, but who have difficulty knowing sort of how to navigate that social world. So so I see social motivation as a huge asset for a lot of kids. So if you're socially motivated, that's a really great place to start, but kids with autism can be socially motivated.
Maureen [00:59:21] That integration that you were talking about earlier.
Dr. Jess [00:59:23] Yeah, exactly. And sort of navigating the social world in a way that's that's appropriate, that changes developmentally in an appropriate way, so, you know, a toddler who runs up to other toddlers at the park and hugs them, that's OK; a five year old or a six year old who does it, it's going to start feeling different, right. And so, yeah, so these things are nuanced and they need to be, and these skills need to be integrated, and we do think we really need to keep thinking from a developmental perspective, what are we sort of what are the developmental sort of not necessarily milestones, but the developmental achievements and sort of the path in development that we typically see, and and how can we help to support kids along that trajectory?
Dr. Heidi [01:00:15] Yeah. One of the things I often kind of reference is sometimes parents come in and they're almost like translators for their kids, so they've kind of like adapted so well to their child's communication skills, right, and the language that they're using. But then they kind of translate, oh, this is what he or she wants, and so there's not an opportunity for them to see like, OK, well, this strategy kind of falls apart in this different setting, right, and this is actually an area of difficulty or an area that we can improve upon.
Dr. Jess [01:00:50] But I think that really also speaks to that, that earlier part of this conversation where we talked about how resilient and flexible and creative these parents can be, right. So oftentimes parents do not realize how much they've been helping because it has come so naturally to them and they've grown in such a natural way with their child's developmental needs, that sort of it's not even apparent to anyone how much scaffolding or how much support that child is getting, and when you pull those supports back, particularly in the context of an assessment let's say, it can be really hard for parents the first time they see that, wow, I've really been helping a lot and when I pull away my help these are the challenges that my child is having.
Dr. Heidi [01:01:38] I think that's a really important way of looking at it.
Maureen [01:01:42] I actually have another question that is kind of a little bit away from what we're talking about that for Ian, what advice do you have for families with multiple languages, that speak multiple languages at home and are noticing delays in their child's development in language?
Ian [01:01:58] That's such a good question. It's a question that's had many answers over the years, and as more and more research is coming forward, the expectation now is that families use the languages of the home with their children. So if they are speaking multiple languages in the home, a child who is developing communication differently or more slowly than is expected should still continue to speak those multiple languages. That age is from a cultural point of view. Then those children need those languages for their family for the same reasons that anybody else would, so that's just necessary. But in fact, they're not learning multiple languages any more slowly than they're learning a single language. Now, what that means, though, is that a child who, let's say, has a capacity for learning a hundred words across two months let's say, those hundred words might be divided into two languages, and that means that they might be learning 50 concepts right, so if you learn the word for Apple in English and in another language, then they've learned Apple, which is one concept, but in two words, right, so it might happen more slowly, but over time, they're still learning what they need to learn. So it takes a little bit longer, but they ultimately get there. We also know that language is generally learned better the younger the child is, so for families who are wondering, should I use two languages now or wait until they've got English down and then add a second language, they're actually better off doing it now, even though there will be a slight delay in the number of concepts that they're learning, they're, the child is more available for that type of learning early on.
Maureen [01:03:43] OK, great. All right, that's helpful. To both of you for parents on the waitlist what are some simple things that they can try at home to promote their child's social communication?
Dr. Jess [01:03:58] Can I start? I think the one that I, the one that I like the best is to help parents sort of think about ways to get a social routine going, and what I mean by that is sort of a playful, interactive game that can develop a little bit of a routine that sort of the child can learn this, this is how this goes most of the time. So common examples that we see with little ones might be peek-a-boo or a certain tickle game or things like that. And the advantage of those is that they can, again, it takes some experimentation and some flexibility, like what, which of these games is going to work best for my child and for me right? So every parent has different comfort levels with different things. Some parents love to sing, some parents do not feel comfortable singing, right. So finding something that's a fun match for you and your child that you enjoy doing that you could sustain for some period of time. So lifting kids high in the air is really fun, but some parents just, you know, find that extremely tiring, understandably. So kind of finding those routines where you can have some fun with some expectation, and then kind of thinking about being face to face in those activities. So is there if it's a fun tickle game can we do it when my child is lying on the bed on their back, or making sure that we're sort of face to face so that we can share those smiles and those those fun times, and in time sort of as those routines are developed and become kind of expected, and the child knows what the next turn is, then you can build in some sort of opportunities for communication. So sometimes it's very, very subtle, like you're going to have a I'm going to get you and a little tickle or a funny noise, and then sort of as that becomes a routine that the child knows and learns and enjoys, you can pause before the tickle and see whether they show you that they want the next thing to happen. So sometimes how they'll show you is they might look into your face, they might grab your arms, they might just move their body up and down in a way that shows I'm excited and I want the next thing. And that, to me, is kind of a really nice way to start in terms of building social connectedness and also very, very early communication.
Maureen [01:06:27] That's nice.
Ian [01:06:30] And I'll build on that. I think being fun is everything for a child, and so as parents, we have to balance the stuff that we have to do, changing diapers, getting dressed, washing hair, brushing teeth, with all the stuff that we want to do. And for parents who are feeling really taxed, that there's so many of these routines that result in resistance or friction or meltdowns and that sort of thing, it becomes, you know, you have to gird yourself for the next one of these, and then you need to recover. And I think my advice is to spend some time in that recovery period doing the fun stuff. Don't just be the bad guy. Also do the fun stuff with your kids so that they see you as somebody who can enhance their fun, enhance play so that they see that people enhance their activities, and that's where social communication really, really blossoms, when kids are able to see that their parents, their siblings, their teachers, the people in their lives can take can actually make their favorite activities even better.
Dr. Heidi [01:07:43] So this conversation has been great. Ian and Dr. Jess, you've certainly highlighted that social communication is more than words. Difficulties of these areas are frequently some of the first signs noticed on the journey to an ASD diagnosis. So thank you, Ian and Dr. Jess for chatting and helping us to learn, appreciate and engage in this episode of ASD Engage.
Dr. Heidi [01:08:14] If you've listened to this episode and have comments or ideas that you'd like to share with us regarding future episodes or what you've heard today, feel free to e-mail us at ASDEngage@hollandbloorview.ca.
Dr. Heidi [00:00:11] Welcome to ASD Engage, a podcast for families of children who are currently waiting for an autism spectrum disorder or ASD assessment. I'm Dr. Heidi Keifer, a clinical child and adolescent psychologist.
Maureen [00:00:24] I'm Maureen Mosleh a psychometrist.
Shawn [00:00:27] And I'm Shawn Brumby, also a psychometrist. We work on teams that assess children for ASD at Holland Bloorview Kids Rehabilitation Hospital. Each episode we will present a topic that reflects concerns brought forward by families we work with.
Dr. Heidi [00:01:01] So in this episode of ASD Engage, we're tackling the topic of eating and feeding. According to Autism Speaks in 2018 a recent review of scientific studies found that children with autism are five times more likely to have mealtime challenges, such as extremely narrow food selections, ritualistic eating behaviors and meal related tantrums. Joining us to talk about these issues today are developmental pediatrician Dr. Sharon Smile and occupational therapist Christie Raffaele. Welcome, and thank you both so much for joining us today.
Dr. Smile [00:01:37] No problem. Hi, Podcast World.
Christie [00:01:41] Thanks for having me.
Dr. Heidi [00:01:44] So, Christie, occupational therapy is tied to a bunch of different services. I know that I often have a hard time describing what an occupational therapist does. Can you explain it for us?
Christie [00:01:55] Sure, it's a great question and a lot of people also get confused about what we do, especially when we talk about working as occupational therapists with children. The first thing you have to do is to rethink the word occupation; so most of us think of that word as relating to a job or a career, when really occupational therapists, we refer to occupation as anything that we do in a day to occupy ourselves. And we categorized those all those activities into sort of three big areas: self care, so anything that you do on a day to take care of yourself, such as eating, dressing and going to the bathroom. Productivity, which for an adult could be work, but for children it could be learning. And leisure, which for children is play. So for for me, working as an occupational therapist with children, I look at all of those areas. Just not looking at it as a career, but more of categorizing things as occupations into those two categories.
Dr. Heidi [00:02:56] So, Christie, how did you get into feeding services in particular?
Christie [00:03:02] So I started out working in the community with children and quickly realized that now kids have to eat, obviously, and feeding is at the top of parents with those concerns and things that they worry about with their children, whether they're typically developing or whether they have some kind of developmental challenge. And so I sort of quickly realized that I needed to better educate myself on aspects of feeding and be able to help parents address these concerns.
Dr. Heidi [00:03:34] Yeah. And Dr. Smile, so Christie kind of touched on this, why does the topic of feeding come up so much in the context of ASD?
Dr. Smile [00:03:42] We know that feeding difficulties, the prevalence or the presence of feeding challenges in kids with autism spectrum disorder is quite varied, so up to forty nine to as max of eighty nine percent of kids will identify as having some feeding challenge, and that could range from picky eating or not, or textural difficulties, difficulty with sensory characteristics of foods which could later lead to some health risks such as obesity as well as nutritional deficiencies. It is a problem, but as Christie says, it's one of the things that kids should do, and I find that mostly when families are coming in for an assessment that we're very focused on that social and communication aspect of that child and try to get interventions to close that gap. And what parents tend to do is in the meantime, they just feed as depending on what their child likes, and it's not necessarily a priority because there are bigger priorities at the moment, which could be getting your child to speak. But it exists. And as Christie had said earlier on in the community, especially for preschoolers, we the feeding challenge is always there, and it presents sometimes at that one year of age or when they're transitioning from liquids to solid foods or any transition process in their dietary intake. However, parents are able to compensate, right? They find other mechanisms to support them. And then once they've reached school age years when they're now with their peers and at school and around lunchtime, feeding becomes more of a challenge, right? Because they are no longer able to have the Pediasure for the lunch or multiple times per day, and they look different from their peers. And then the question comes up, how can we help?
Dr. Heidi [00:05:52] Yeah, I want to I want to explore that a little bit later in our interview. Dr. Smile, how did you become interested specifically in the topic of feeding and ASD?
Dr. Smile [00:06:04] I love food. I'm a real carnovire and Christie knows this I say that all the time, I'm a true meat eater, and it gives me pleasure to eat. But I think in the, in my clinical work, in doing our history with families, recognizing that, we'll ask how is your child eating? And when I go through a 24 hour food diary call by parents recognizing that this kid is not necessarily having all the food groups that they should and puts him at risk for iron deficiency, anemia; or parents are compensating by giving lots of juice, lots of Pediasure or milk, and I'm wondering, how can we why is this happening? And I think based on that, trying to figure out what intervention would be appropriate, recognize that we don't really have a good hold or understanding of feeding difficulties in preschoolers especially. And I wanted to come at it from a preventative lens, so if we know it's going to happen, how can I prevent this? What are the factors that are driving this? And that's what led us into connecting with the feeding program here at Holland Bloorview to try to figure out what's happening and how we could support our families.
Dr. Heidi [00:07:18] So, Christie, can you give us a sense of what mealtimes often look like with the families that you work with?
Christie [00:07:26] Great question. Obviously, every every family is different so mealtimes are going to look different depending on whose home you might peek in to at any given time. But there's definitely themes; there's a lot of anxiety around meal times for a lot of families, particularly families that are in the mode of trying to get their child to follow mealtime routine or trying to get them to try and use food. So there's definitely anxiety for some families. And there's other families who are, you know, sort of in survival mode and they've almost, you know, decided that OK this is the way it is, and sometimes that just looks like the child or the family you know following the child around with a spoon trying to feed them or, you know, having the child eat in front of, you know, on the couch in front of the TV or in front of an iPod, and sort of being very restricted to just a few different food choices.
Dr. Heidi [00:08:27] Yeah. What are some of the common problems with eating and feeding that you see in the children that you're working with?
Christie [00:08:34] Well, I think like Dr. Smile talked about, we see, you know, definite themes of, you know, limited food repertoire. So children preferring only, you know, very few food from each food group or maybe not having food from certain food groups all together or being very brand specific, so, you know, preferring soft food, nuggets or fries versus, you know, ones that might be able to be made at home. So there's definitely a patterns that we see there. There's also patterns of, you know, being resistant to following a routine, so not sitting at the table, sort of wandering around, getting up frequently, as well as refusal behaviors. So things like screaming, tantrums, gagging, pushing the food away when parents are trying to offer new foods.
Dr. Heidi [00:09:26] Yeah. So you touched on them seeing patterns, right, in terms of like patterns related to the brands of foods that they might be eating or patterns of behavior and stuff like that, Thinking Dr. Smilde had mentioned specifically picky eating that children might present, do you often see patterns related to the kinds of picky eating that a child's showing?
Christie [00:09:49] Yeah, I mean, we've there's there's a few different patterns that I think are well documented in the literature in terms of children that are gravitating towards carb heavy foods, so things like breads and cereals and crackers and things like that. Definitely the fast food pattern, I think, is something that we see. I think it's predictable. And there's also a category of kids who really have challenges transitioning to more solid food. So they would stay on purees, or drink smoothies just fine, but have difficulty transitioning to foods that need to be chewed or more difficult to eat.
Dr. Heidi [00:10:29] Yeah, I've seen some cases, too, where kids, they like their food plain. So like no sauces, no condiments, like the planer the better, is that like a frequent pattern too?
Christie [00:10:43] Yeah, definitely. And I think that has to do with the fact that, you know, a lot of kids that are on the spectrum tend to be very sensitive to different smells, textures, tastes, the way things look. And food is undoubtedly a really sensory experience. And so I think sometimes the simpler the food is, the less complicated it is for kids to process. So it's easier to eat a plain pasta noodle and be able to predict what that's going to taste and feel and smell like and look like as opposed to having different sauces on it each time.
Dr. Heidi [00:11:19] That's a really great way of looking at it. At the top of the interview, I mentioned ritualistic eating behaviors, which sounds like a very fancy term. But what kind of behaviors would that include?
Christie [00:11:33] So I think I've seen, you know, everything from needing to sit in the same spot each time having food, you know, have to be served on a certain plate or cut in a certain way, or one where I think a lot of parents can relate to is that foods can't be touching one another on the plate or, you know, kids have to have the same TV show on each time they eat. So I think it it ranges depending, obviously, on the child and how rigid their behaviors are.
Dr. Heidi [00:12:10] Mm hmm. And so think about that picky eating and those behaviors. How do you help families deal with those kinds of issues?
Christie [00:12:20] So I think we have to look at why are those behaviors happening, we always have to look at the function of a behavior. And for some parents sometimes that's hard to do and that's where professionals can come in. So people who have you know experience in feeding like myself, or behavior analysts who are particularly skilled at looking at or trying to determine the function of a behavior. And I think a lot of, you know, what I've seen in kids is their insistence on sameness around food or their resistance to trying new foods really relate to anxiety, and not knowing what that new food is going to taste like. And, so rather than dive into that scary bite of food, it's easier just to stick with what we know, and what we like and everything will be OK. So I think a lot of times it's anxiety that is appearing to parents as defiance and refusal behavior.
Dr. Smile [00:13:22] Tagging on with Christie, even though anxiety may be driving it and their behaviors that we see, we have to look at a holistic pattern, right? And see what factors are driving that feeding behavior or challenges with transitioning to new foods or increasing food variety or repertoire. And what we've learned from experience, and this is through multiple parent workshops and doing research, is that there are different levels that we need to look at, there are medical issues that need to be looked at, and for Christie and anyone working in feeding, looking at dysphasia, where there's difficulty with swallowing or chewing foods, one, we have to rule that out as well as constipation and hydration factors into those factors or factors into food selectivity and oral motor difficulties chewing, what's happening with the mouth may also impact on why that child is not eating. Behavior, as Christie brought out, are we having mealtime routines? Is there a schedule in place? Are there expectations placed? Sensory issues which occupational therapists will manage and there are different research intervention protocols that are available for that. And then there's this environmental factor that is important. And finally, parent child interactions. That's really important. What are parents expectations? We need to look at the child's developmental level, to look at what should we really be expecting for this child? Is purees appropriate because their oral motor function is at a level where only pureed foods are accepted, and if we're trying to transition to solid, it will not be successful. So I think it's having an overall picture of that child's feeding pattern and developmental profile is going to be useful. And looking at what's happening at the home environment and that parent child interaction and Christie's correct, anxiety drives a lot of the difficulty that we see.
Christie [00:15:25] You know, alot of times we talk about, you know, parents come and talk to us about a feeding problem. And I think, you know, Dr. Smile just said we really learned to try to look at that feeding problem and unpack it and look at what is actually, what are some of the underlying factors that are leading to that quote unquote feeding problem. And that's why we sort of, you know, have learned to look at the feeding problem through a different lens, and kind of go through the list of things. So is it a medical issue? Are there any oral motor concerns? Are there behavior issues, you know, challenges, things like that? So I think it's more of a systematic way of trying to unpack what is really underneath and contributing to the feeding issue. So that drives where we go in terms of trying to help.
Dr. Heidi [00:16:11] Yeah, I think that that's a really comprehensive way of describing it. I know a lot of times in psychology, when we're thinking about like what is the behavior we see, often we'll use the the visual of like a mountain. So the mountain is kind of like at the surface and you're seeing that. And so in terms of eating and feeding, parents might be noticing like the noncompliance or the defiance around eating issues, right. Or like wanting to stick to particular foods and that sameness that you were talking about, Christie. But then the necessity of actually looking underneath, so what's below the surface of that mountain that might be contributing to what you're seeing. Thinking about that Christie, what do we, like I mean, can you speak to a little bit about the sensory sensitivities that might be a player at root at some of the eating difficulties that we see?
Christie [00:17:06] Yeah, that's a great question. So I think we know that a lot of children with ASD do have sensory sensitivities, and beyond that they tend to process sensory information differently. So they may, you know, taste things differently or more strongly or smell things differently or more strongly than someone else. And so, you know, given that eating is a pretty sensory experience that involves all of our senses, I think sometimes, you know, when we have, when kids have an oversensitivity to something, they may want to avoid that certain food; sometimes the smell of, you know, someone else eating at the table is just too much, and it makes that child not want to be at the table. And those things are challenging, especially if the child doesn't yet have the verbal skills to be able to explain that, you know, that I'm leaving the table because I don't like the way that my brother's food smells, or there's too many different smells in the classroom at lunchtime, and so it's easier for me just to try to escape the classroom. So it makes it harder for for parents and caregivers to try to be detectives about what is driving the child's, you know, what is causing this behavior is when really it may be an underlying sensory issue.
Dr. Heidi [00:18:25] So I've heard a bit about sensory sensitivities tied to the idea of hyper arousal vs. hypo arousal. Could you explain a little bit like what that means?
Christie [00:18:41] So it just basically means that, so you can either be hyper sensitive, so oversensitive to something or undersenstive. So we talked about the oversensitive, where you just want to avoid something undersensistive might mean, you know, that you have a whole lot of food in your mouth and you keep putting more in because you're not, your mouth doesn't give you the signal to let you know that it's still something in there, so you might be kids overstuffing or trying to swallow food before they've actually fully chewed it, or those kinds of things.
Dr. Heidi [00:19:14] Yeah, I know, like sometimes in feedbacks, if a child that I've been assessing is showing, like sensory sensitivities, I try to give a parent a sense of how then their child's experience of the world is different from theirs, right. Because a lot of times we, it's hard to put yourself in somebody else's shoes, right. So I don't have a good example for feeding persay, and if you do. Christie, let me know, but I often use the example for auditory information. So sound can often be one of those areas that kids are sensitive to. So oftentimes when I'm talking to parents, I'll be talking about like we, we seem to be on the same wavelength in terms of how we're processing this conversation, listening to this auditory information. And so we're focused on then what each other is saying and then processing the language and trying to comprehend the conversation. But for somebody who is very sensitive to sound, they might be hearing that white noise of the light bulb in the background. And when they're really focused on that, that could be really disregulating, right. So how do you, if they're really tuned into a slight sound that you aren't and I aren't necessarily tuned into, then that could be really dysregulating, right. So they might not be picking up as much about the environment or in the same way that we are.
Christie [00:20:38] Right, and I think how you can apply that notion to feeding is that it can explain why kids, you know, move towards certain foods and away from other foods. You know, if you want to continue with your example of sound, I remember one little guy who didn't like chewing crunchy foods because when he crunched it, it was too loud. And it's something that we don't think about when we are eating. We don't think about the sounds that we are hearing as we're chewing because that's not really what our brain is in tune with. But for kids that are particularly sensitive to sound like this little guy that I'm thinking of, you know, things like raw carrots, or chips, or pretzels was too loud in his head. And so he preferred to eat softer food.
Dr. Smile [00:21:22] And I think this is why it's important if we have a client who is able to describe their experience with food, it's important that they also contribute to an assessment and not only using what parents have identified as being challenging, but asking. And I think, Christie, I can reflect on one of our clients who the goal was to eat strawberries, but he explained that when he ate strawberries, it felt like he was eating sand because the way he experienced the pits in the strawberry was like grains of sand. And why would I want to eat that? All right? So based on that strawberries out.
Dr. Heidi [00:22:00] Right. Yeah. And probably like thinking about a strawberry in a way that you or I wouldn't think about the taste or that processing of it. So, Christie, when we're asking about mealtimes in assessment or are thinking about them in intervention, we're really considering a range of behaviors, aren't we?
Christie [00:22:19] Oh, absolutely.
Dr. Heidi [00:22:20] What kind of, so in addition to kind of like the picky eating or those ritualistic behaviors, what other kinds of things are on your radar?
Christie [00:22:31] I'm looking at, you know, the whole mealtime environment. So, you know, where is the child eating, you know? Are they hungry when they come to the table or have they been grazing all day long? You know, parents are trying to get food in, which then sort of sets up for a meal time that doesn't go so well, then the child only eats three bites of food because they're not hungry.
Dr. Smile [00:22:55] I think mealtime behaviors could be difficult, especially if we have electronics available. So getting the kid attending to the food and participating in that family, sitting at the table, meal time might be challenging, and so some of the things that we look for are opportunities to make it more pleasurable.
Dr. Heidi [00:23:13] I think also in the families that I work with too, a lot of times, like putting into the context of meal time, like try not to make assumptions about, say, fine motor skills, like in certain families, right, the expectation, like they're eating foods that are more finger foods. So if I'm asking about like and can the child use a spoon or a fork, it's probably not as relevant for that particular family, based on what their mealtime is like. I think there can also be a lot of differences too, in terms of expectations around staying at the table. And a lot of I see a lot of fights that happen around like, no, you need to be still when maybe the focus should be on on the eating piece of it, and yeah, there's going to be some movement.
Dr. Smile [00:24:02] I'll probably start and then ask Christie to elaborate. I think in our experience, what we've found, there has to be some amount of parent education about what is expected, right. And for any task there is these prerequisite skills, right. If I'm asking someone to sit at a table, can they attend to sitting at the table for a period of time? If that's not necessarily a realistic goal, that we have to take a step back and start at a different expectation.
Christie [00:24:32] So I think it goes along with that idea of how do we help parents to tackle these issues, and, you know, the idea that we first try to help identify what are these underlying factors that might be contributing and then where do we start with trying to make some changes? And whenever we try to, you know, implement a new strategy, we want to make sure that it's a small enough step or we're making a small enough change, that everyone's going to experience success pretty quickly. So, you know, even though a parent might come to me and say, I want to work on expanding my child's diet, getting them to try new food, I might say, OK, that's a good long term goal, but what are some things that we need to work on first in order to make that long term goal more likely to be successful? And so, you know, a lot of times it might have to do with, you know, just getting the child a booster seat so that they have a place to sit at the table where it's not as convenient for them to hop up and down and run around during the meal time. And we might start out with just having that child in the booster seat for, you know, one minute a day, to eat a preferred food, or two minutes a day to eat a preferred food. So we would take really small baby steps and, so that everyone is experiencing success and then work towards that longer term goal of getting the child to try new foods.
Dr. Heidi [00:26:01] So really building them up over time.
Dr. Smile [00:26:04] Right. And parents having their, and for the treatment of it as well is parent education. I keep coming back to that because I think we have to ensure that parents understand where that child's developmental level is at, what is our expectations for eating, as well as how to support them in their response to the child refusing a food, or even when they do accept a desired food item. How do we celebrate that? How do we leverage that to go to the next step? So in any intervention, when it comes to a child with feeding challenges, parents are integral in success. And we're going to have to change parents behavior as well.
Dr. Heidi [00:26:52] Do you ever find that there are any common misperceptions that parents have about their child's feeding or eating difficulties? And maybe we'll start with you, Dr. Smile.
Dr. Smile [00:27:04] It's their fault. They're a bad parent or I didn't pay attention to this. And that's really hard to hear because again, with autism spectrum disorder, everything, development is fluid, it moves, it changes with time. And feeding is dependent on many external factors that sometimes we have no control over. Another misconception is that if I just have 12 weeks of intervention or participate in an intervention program, this is gonna be solved. And that's a misperception because feeding challenges is something that is a long term challenge that a child will have. And Christine can speak a tad bit about this. And I always refer back to her when she says I can teach, I can try to get your child to accept a particular food item, but he may not. I can't change the sensory responses they have to a food so we could tolerate. So we're really working at flexibility, the child's flexibility around accepting new foods. And sometimes we have to have these honest and open discussion with parents. What is the real treatment for food selectivity? If the child is nutritionally adequate and we're not concerned about any micro nutrition deficiencies, then we can take goals one step at a time. So small goals slowly over a period of time. Christie?
Christie [00:28:39] Yeah. So for me, you know, as Dr Smile says my mantra to parents and therapists and whoever will listen is you can never make a child or anybody, for that matter, like a particular food. But what we can do is find different strategies that might help somebody to be more willing to try new foods. And so as soon as we find that strategy, or oftentimes it's a different toolbox of strategies, to help someone become more willing to try new foods, it opens the door to them accidentally finding a food that they might actually like or be able to tolerate. And I think that if we can help parents to reframe how they look at success with their kids when they're working on feeding into that sort of a way, that success doesn't mean they're going to eat 20 new foods tomorrow, but success might mean that they will try different foods than I think it helps parents to sort of stop looking for the magic, you know, therapy that's going to enable a child to eat at the buffet tomorrow.
Dr. Heidi [00:29:53] That's great. I think this has like been something that's threaded through all the responses in our conversation since we started the interview. But eating and feeding are emotional topics, aren't they?
Christie [00:30:08] Oh, absolutely. I mean, you know, I think Dr. Smile started by saying she loves to eat. I don't particularly love to eat. It's just not my favorite thing to do, and I think, you know, for a lot of families and different cultures, food is an integral part of a family celebration and cultural celebration. And so, you know, first and foremost, parents want to make sure that their kids are, you know, nutritious, you know, getting the right nutrition and that they're healthy. But they also have a really strong desire to want their child to enjoy eating so that they can participate in these important family events. And it's not to say that that's not a good goal, but I think sometimes we do have to help families to understand that, you know, their child may not enjoy eating. And I think we've heard, you know, especially recently out there in the autism world where there is, you know, older children and adults who have described in quite a lot of detail why it is that they don't like to eat. And so it's also, you know, helping parents to kind of reframe, you know, what might be a realistic goal and what might they be okay with, and how can their child still enjoy a birthday party without necessarily enjoying the cake that we assume they're always going to enjoy.
Dr. Smile [00:31:37] And for us to be present as parents for when that opportunity arises and that child would like to trial something that is new, that we're open to support them during that experience as well.
Dr. Heidi [00:31:51] Yeah Dr. Smile, you were mentioning kind of like misconceptions that parents might have and you kind of went to the the self blame, right, that parents might get at. And really, in a lot of ways, I find like parents like something about feeding your child is almost like very integral to the rule of I'm a parent. I keep my child, like, nourished with this food. And then when that's not working out, that reflects on me.
Dr. Smile [00:32:19] So if we think of post delivery, the next step is what, breastfeeding or bottle feeding. And there is that bonding mechanism that happens and that attachment that happens. And I think for some families, it's a rite of passage, right, for parents to be able to support their child in whatever it needs, right. Similarly, providing shelter, security, feeding is also an element. And when that is taken away from you or you feel that you're not able to support your child with a balanced, diet, it could be devastating to parents. And, as Christie said, you know, we can always identify when there's a challenge, but then we have to reimagine how can we then support and support families to say, hey, you're doing the best that you can. We know this is a challenge. These are strategies that we could trial and be there with them while we're trying the different strategies to see which works to help to support this child's nutrition. But it is from breast to bottle.
Dr. Heidi [00:33:29] Is that sometimes like the first time a parent might be getting that message, you're trying the best that you can? I think of like some families where, you know, there are kind of differences in the rule or the responsibilities that each parent takes on, so somebody becomes responsible for the feeding, and when the feeding becomes difficult, the rest of the family is like, hey, what's going on? Like, why can't you do this?
Dr. Smile [00:33:59] And I think everyone loves you know, Grandma loves the child, Grandpa loves the child, aunts, uncles, and they will offer their opinion on parenting skills as well as feeding skills, and it will be challenging for a parent who is struggling with feeding. And then we have the societal implications as well, expectations, what you see on the media, Facebook, parenting magazines, and it can be daunting at times. However, when I do see families, I say: guess what, Johnny, his weight is OK. His height is OK, right. Nutritionally, we're not concerned about any deficiencies, and so having that awareness to have that discussion in an investigation when it's indicated, sometimes we'll get that pressure off the parent. OK, medically, he's OK. What's the next step? Then working with clinicians like Christie and speech language pathologists, as well as behavioral analysts to then figure out what strategies will be important to get Johnny to the next level.
Dr. Heidi [00:35:03] Yeah, I'm sure that goes a long way to help to help parental stress to to lower it. Christie, is there anything that you do to help alleviate the parental stress around their child's eating?
Christie [00:35:15] Yeah, for me, it's really helping parents to once again try to break down what are some things that might be contributing and how can we tackle it? It's giving parents a plan because a lot of times, you know, it just seems like this massive mountain in front of them and I don't know how to tackle it. And so I think a lot of times if parents can, you know, have some reassurance like Dr. Smile says like it's not their fault. And, you know, help them understand the reasons why this might be happening and give them permission to accept that the fact that their child's eating experience might be different than the other kids, that the birthday party or the cousins that come over on Sunday or whatever it might be, and then to give them some tools to help come up with a plan to try to make it better.
Dr. Heidi [00:36:07] So and that ties in nicely to to think about it, like when a child starts day care or school and then eating is an activity that's supposed to happen in these other settings, does that sometimes create additional challenges for the picky eaters and their families?
Christie [00:36:22] I think it's a huge source of anxiety for parents when they have to make a choice about sending their child to daycare or whether it's time for their child to go off to school because they worry about whether their child might eat in a different environment, and how they might be judged, frankly, when they go into those different environments, because, you know, if the child only eats you know, Ritz crackers and cheese strings, you know, and that's all they bring everyday to school, parents worry that it's going to reflect on their parenting abilities rather than being a reflection of their child's eating challenges.
Dr. Smile [00:37:03] Yeah. I just wanted to add that, yes, there's this judgmental factor that's there where it's important for parents to have discussion with their school, the teachers or daycare providers, if they're finding that their child is struggling with eating, because they could also be partners in the management, right. And the blame game and judging a family because a child is struggling is not supportive and helpful.
Dr. Heidi [00:37:37] So, Dr. Smile, parents may be concerned that their child isn't getting enough nutrition and sustenance when he or she is really limited in what they will eat, and you kind of alluded to that earlier. What should parents be looking for as red flags that that might be the case, and that their child's health is at risk? And then what should they do with that information?
Dr. Smile [00:37:58] So it's important to look at the kinds of food your child is eating and any supplements that they're also taking. So big items, most of our kids don't like to eat vegetables and some kids may not like to eat meats like red meat. So if I have a client who is not having green leafy vegetables or red meats in their diet, I'm worried about iron deficiency anemia. So it's looking at doing a 24 hour data recall. If a parent is recognizing that they're supplementing their child, is drinking milk primarily and having crackers primarily for their diet, that discussion should be had with their family physician or pediatrician and have a consultation with a dietician to look at calorie intake as well as nutritional intake. There, commonly we'll see iron deficiency or iron deficiency anemia if it's severe enough, there's zinc depletion, noted protein, we have calcium as well identified in kids with autism spectrum disorder and feeding difficulties, but you may not have clinical manifestations, so you have to have a high index of suspicion, and that starts with in the family physicians or pediatricians office by doing a food recall and seeing whether or not the child is doing well. Most kids will have normal growth patterns, so that means weight and height measurements are within a nice developmental trajectory. However, if a child is losing weight or the diet is becoming more restricted over time, parents should have that discussion with their pediatrician, and as such, then blood investigations will be done to identify any nutritional deficiencies. But it's a high index of suspicion that's needed.
Dr. Heidi [00:39:48] It's good to keep track of. So, Christie, I guess what I'm wondering is, do these issues do they get better with intervention?
Christie [00:40:00] Oh, absolutely. I think, you know, again, every child is different, and I think that it's so important to individualize intervention for a particular child and family and to not sort of use a cookie cutter approach and say that, you know, every child that presents with food selectivity needs to have this intervention or that intervention. So, you know, I think the situation where I've seen the biggest change happens when the family and the child are sort of ready to tackle these challenges because they're not easy. And to take the small step towards, you know, achieving bigger goals.
Dr. Smile [00:40:48] Just like the autism spectrum is along this continuum, similarly, feeding is that continuum, right. So we can have kids were having milder food selectivity, who nutritionally they're well, participating in activities, and really and truly, they don't need a multidisciplinary team assessment to come up with strategies to deal with that. Parents need some guidance as to how to support and present foods over time. But then we have this other group who's on the other end of the spectrum where they're quite restricted, it's impacting on their nutrition, so they're presenting with nutritional deficiencies. They may have changes in their weight or height, so affecting growth and its impacts on their psychosocial functioning in the community. So they're not able to go to birthday parties because kids are quite anxious about being presented with foods, or they may have to leave school to go home to have lunch because they're so overwhelmed within their academic setting. And if this is not deemed secondary to any cultural practices or that child is not having insight into body image challenges, we have to then think of a condition that's called avoidant restricted food intake disorder, of which there's an intervention program that's primarily behavioral based, cognitive behavioral based therapy for that, and some of our kids may meet that criteria, and as such, should be assessed appropriately and referred to the right health care professionals to manage that presentation.
Christie [00:42:22] Yeah. And I think I'll just add that I think the way that I would, you know, explain to a parent if they say, you know, can we fix this problem or can we cure this? You know, I think I often find myself talking to families about the fact that this is a life long journey because, you know, again, we're you know, the goal is not that in 12 weeks, the child is going to eat, you know, 20 or 50 foods, it's back to that goal of the child being willing to try. And that willingness to try is going to need to continue throughout life until, you know, they reach a certain point where they feel like you've got enough foods. But there's not a quick fix, there's not sort of a, you know, a one cure or one program. It really is a life long, long term process. It's a different way of looking at it I guess.
Dr. Smile [00:43:18] Yeah. And kids will add as well as remove foods over time, right.
Christie [00:43:23] As we all do.
Dr. Smile [00:43:25] As we all do.
Dr. Heidi [00:43:26] You know, Christie, compared to when you first started working with children with ASD, have any of your perspectives changed in the way you think about the topic of eating and feeding?
Christie [00:43:40] Definitely. You know, I think for me, it's when I first started, like any, you know, young and energetic therapist, I was looking for the quick fix, you know, reading the research, where's the intervention program that's going to make eating better? And I think I just heard and interacted with and had experiences with so many families over the years that had tried all kinds of different therapy programs and they didn't work. And I think it was that experience of constantly having conversations with families where they would say, I tried this, I tried this, I tried this, it didn't work, it didn't work, it didn't work. That sort of led me to think, OK, we have to actually think about feeding differently. And that goes back to that you are trying to be a detective and figure out, OK, let's not look at the top of the mountain, you know as the feeding problem, let's look at the things that might be contributing to this. I think that's probably been the biggest thing that has changed for me over the years, working with this population.
Dr. Smile [00:44:48] Yeah. And what about for you, Dr. Smile?
Dr. Smile [00:44:51] I think in working with the population, as well as Christie and Rebecca, and our behavioral analyst in a research capacity, one thing that I paused often to reflect on is are we asking the right questions? And then I also pause and think, are we defining success appropriately for families who are going through this journey? So for many of times we look at our primary outcome measure being number of foods, is that really clinically useful and meaningful, or should we be looking more at parent child factors, building that, supporting that and see how that in itself, if that's more enriched and a pleasurable environment would that then translate to wider food variety, or increased number of foods? So the population has challenged me to think differently about feeding, and to see how else we could collaborate with parents, clinicians to think through what is truly happening with this child. And for kids who are able to voice their own opinion, hear from them, how they're feeling and experiencing it. And is it a bother to us versus a bother to them? So perspective taking, I think, has been something that I've learned during this journey.
Dr. Heidi [00:46:16] So a question that I'm going to throw out to both of you as well, for parents who are listening and are struggling with feeding, is there one thing that they could start working on right now to help their child and maybe start off with you, Cirstie?
Christie [00:46:30] So I think that I would tell parents to, or suggest to parents to try not to jump right to be trying new foods right away. I would, you know, have parents to kind of sit down and try to be a detective and really look at, you know, can my, is my child willing to learn new things or participate in new things in other aspects of their life? You know, I often you know, talk to parents about the fact that if you think of degrees of difficulty, asking a child to try a new food is really, really high up on the list of difficult things to do. And so I often ask parents how the rest of their day goes. So if a parent tells me, you know, that they have to, you know, fight a tantruming child to get them to put their boots on in the morning, which is a relatively easy degree of difficulty, then I'm probably not going to suggest that they start working on the highest degree of difficulty, which is feeding. So I'll sort of ask parents before they dive into feeding to sort of take a step back and be a little bit of a detective and do an assessment of their own situation, and decide whether their prerequisite things are in place before they can, before they might be successful with working on feeding.
Dr. Heidi [00:47:55] So being a detective. And what about you, Dr. Smile?
Dr. Smile [00:48:01] I, one thing I would say is not to force feed your child, because that place a negative experience to, or associates food with a negative experience, and then we'll have to try to overcome that exposure, which can be difficult. I think if parents are concerned about their child's feeding, start that conversation with your family physician or pediatrician, and that person will help with networking with, or bringing in other clinicians, such as a dietician, an occupational therapist or speech and language pathologist and not working in isolation, but collaborating, and as Christie said, trying to figure out what's driving this feeding challenge. So I think if we're as I said in Covid 19, if we're in this, we're in this together, and feeding is a togetherness sport, right? It's not parents versus the world and child. It's us all coming together, working and trying strategies to see which one works best for that child. And not all strategies will work, and having a personalized type of view of intervention strategies is going to be key.
Dr. Heidi [00:49:13] Yes, so those are really useful and concrete strategies. Dr. Smile you touched on something, we're actually recording this episode during the Cauvid 19 pandemic, right now with that pandemic going on should parents be thinking about their child's eating differently or having different expectations or goals?
Christie [00:49:35] Yes. So I think what I would tell parents right now, as we're talking in the midst of the Covid 19 pandemic, would be to try not to embark on anything new right now in terms of feeding, you know, just try to keep the boat afloat, as we're all trying to do and keep expectations low. Don't try to implement a new feeding program or new strategies right now. And I think, you know, right now it's difficult to know when you might be able to go grocery shopping or to even be guaranteed that, you know, your child's particular brand of something might be available right now, and so I think, you know, do the best you can right now. And, you know, if you don't have your child's particular favorite food today, but you know that you will have it on Saturday, it's OK to say that we don't have it today, but you can even you know count how many days, in three more days you'll have your your favorite food or we'll be able to have pizza or whatever it is, just to help kids to feel less anxious about the fact that they don't have it right now. But they might have an idea of when it's coming.
Dr. Smile [00:50:46] And I think now would be a good opportunity for one, that surveillance that Christie spoke about documenting what's your child actually eating, because when you do seek out help by your family physician or pediatrician, they're going to want to know, do a data recall. But there are other principles that could be helpful during this time. Just having a schedule, having mealtimes together as we're all in the same home, trying to work on those skills or ensuring that that is in place, those are prerequisite skills for tackling feeding in kids or youth. So if we can establish that during this period, that would be helpful.
Dr. Heidi [00:51:28] That's great. So I think we're going to wrap up at this point. So, Dr. Smile and Christie, it's been really interesting to explore all things eating and feeding with you. For people tuning into this episode, we'd love to hear from you if you have comments, questions or suggestions for discussion that you'd like to hear in our podcast, feel free to email us at ASDengage@hollandbloorview.ca.
Dr. Heidi [00:00:11] Welcome to ASD Engage a podcast for families of children who are currently waiting for an autism spectrum disorder or ASD assessment. I'm Dr. Heidi Keifer, a clinical child and adolescent psychologist.
Maureen [00:00:24] I'm Maureen Mosleh a psychometrist.
Shawn [00:00:27] And I'm Shawn Brumby, also a psychometrist. We work on teams that assess children for ASD at Holland Bloorview Kids Rehabilitation Hospital. Each episode, we will present a topic that reflects concerns brought forward by families we work with.
Shawn [00:01:02] In today's episode, we focus on the power of play, an important topic that often doesn't get much discussion. Yet research shows that children playing with parents and peers is key to developing bodies, brains and social bonds. It can help with language, math, managing emotions, social skills, planning and organizing. We're going to be talking about play and ASD with two guests today, Megan Lynch and Simmy Kassam, both occupational therapists at Holland Bloorview Kids Rehab Hospital. Thank you both for joining us today.
Megan [00:01:41] Thank you for having us.
Simmy [00:01:41] Good to be here
Shawn [00:01:41] Can you start off by explaining what you do here at Holland Bloorview and how you got involved with the ASD population?
Simmy [00:01:48] Sure. OK, I'll start. This is Simmy. I am an occupational therapist in the Child Development Program on the Communication, Learning and Behavior Team. And it's strictly a diagnostic clinic, so our role is assessment and consultation. And because I primarily work with families of children under five years old, a lot of my work is more around observing a child in the session and a lot of it is more consultative with the parent, whether I'm looking at a child's sensory processing skills, their motor skills or their play skills. And so a lot of it is just interviewing the parent, watching the child, how they interact and sort of listening for different areas of development. And then I'll bring them back, if necessary, to do a follow up consultation to see, to explain the strategies that I'm recommending and to see if that's feasible that they can actually do them in their home, and to give them strategies they can also implement as they progress in the school system. And so that's pretty much...And how I got involved in ASD, well, that's a long I don't really want to take up your whole podcast. I always say that pediatrics chose me. I didn't choose it. I happened to move to New York a long time ago and the only positions there were in the school system. So I had been four years out of university. I was only working with adults and geriatric population, and I basically went to New York, got a job in the school system and had to learn on the job. And I've never looked back. And so I had to work with children with Developmental Disorders, ASD. And and then when I came back to Toronto, I was fortunate to work in a private practice with an excellent occupational therapist who is very, very experienced in sensory processing and predominantly a lot of the clientele there were of the ASD population, so I got to see do a lot of intervention that way. And then at Holland Bloorview, just working on this developmental team is more diagnostic and consultative. So I've done a bit of intervention, a bit of assessment, and I would say for me, I really love working with the families. That's really a passion of mine and giving them the tools to be able to interact and and play with their child.
Shawn [00:04:24] Megan?
Megan [00:04:24] Great tough to follow that. So, yeah, so as Simmy said I'm an occupational therapist here as well in the Child Development Program. I've been on the Communication, Learning & Behavior team for probably over ten years now. So my role is very similar to what Simmy described, so working with the families, providing recommendations, strategies, ways to support their child at home, also at school. For me, getting into working with children with autism, it was, I started with a family many years ago before I was even an occupational therapist, before I even knew what an occupational therapist was, I was working with a family in their home and they actually had three sons with autism. So I got to be right, right in their home life, got to see day to day what that looked like, and that really sort of built that connection for me. And then once I became an occupational therapist, that was sort of where my focus always was. I always knew I wanted to work with children and particularly children with with autism.
Megan [00:05:26] And so we connected with both of you for this episode on play, in part because you work as partners to facilitate workshops about play that are geared towards parents. Could you tell us a bit about that work that you do with parents?
Megan [00:05:39] Sure.
Simmy [00:05:40] Sure.
Megan [00:05:41] Do you want me to start?
Simmy [00:05:41] Sure. Yeah.
Megan [00:05:42] Yeah. So we were, you know, in our discussions in regards to the clients that we see, we were finding a lot of the same sort of issues were coming up with families, they were sharing a lot of the same struggles around play and other kind of daily living skills, particularly with the really young kids. So, Simmy and I thought it might be a good idea to bring those families together so that they could share their experiences with each other, but then also have the support of ua as occupational therapists who can kind of facilitate that discussion, but really provide the chance for the families to share their experiences and share strategies. So the way that the group works is that we do a little bit of talking at the beginning, we talk about, you know, sensory processing. We talk about play. We talk about other kind of daily living skills. And then the group really opens up, and that's where we allow families to ask questions of each other. You know, we we often turn it back to the group, have families share, and that's where you really see that connection. So when a family hears something from another family that they've tried that's worked, then you see that there's really that that light bulb goes off for some of our families and they're much more willing to go home and try some of the things when they've talked about it with other families. But also just to know that, okay, I'm not the only one that's experiencing this. You hear it from somebody else, and then again, that helps to kind of build trust in that conversation and more willingness, I think, to be able to go home and more confidence, I think, to go home and try out some of the strategies.
Simmy [00:07:12] Yeah, just to piggyback off what Megan was saying is that what we've found we've been running these groups for about a little bit over a year now, and the groups have just been so successful in parents connecting with one another, sharing their strategies, but then even connecting and sort of setting up play dates, which is a strategy we recommend, especially for children with ASD, because we really want to build those almost social skills, and even if it's just parallel play, which we might get until later, that's OK. And we really want it to be parent supervised - child led. And we think that's really an important, you know, an area, and a lot of parents are maybe new to the country and they don't have a lot of family around or they don't really have, the child doesn't have a lot of friends, so sometimes just connecting with another family who may also be going through the same situation we found really, really beneficial, and then they can just be sort of make the introduction, have the discussion, and then we sort of, you know, leave it. And it's just, it's just nice to see those connections build at the end. So we actually have a group coming up on Monday that we were just preparing for. So we're really loving a different way of doing our job. And then again, just the last thing to add is that, you know, we are the professionals, we give these strategies, but we always say the parents are the true experts on their child. You're with the child 24 hours a day, maybe now. And so, you know, whatever works for your child, even though we give these suggestions, it may not work for your child. So you will know what works best. And our biggest goal is just have fun.
Shawn [00:08:45] So what can parents expect to see as play typically develops in children? Are there developmental milestones of play or different stages of play depending on a child's age?
Megan [00:08:57] Yeah. So when we're looking at typical play development, children will sort of naturally progress through different stages, so early on in play it is sort of expected that kids will just play on their own and do lots of learning with the toys themselves. And then as they start to develop other skills, they might move to more what we call parallel play. So then they're playing beside another child. So, again, maybe not interacting so much, but they're playing within the same area. And then again, as they develop more and more skills, they will do more like imaginative play, more pretend play, there's more co-operative play, there's more interaction with another child, more turn taking. And we see that as a child moves through the different stages of play development.
Shawn [00:09:43] Can you talk a little about the kinds of activities kids with ASD might display within their play?
Simmy [00:09:51] Well, that's where we're just assuming that they actually know how to play with a toy, because typically what we find with children with ASD, oftentimes, what we've observed in their play is that they just like hearing the sound of it. So they just bang the toys together, or they like dumping the toys, and we think, oh, that's cute. They don't understand necessarily how to play with toys. But what we, what I found with the children I typically work with, they really seem to enjoy the cause and effect type toys. And what that means is when you you know, you press a button, something pops up, for example, like a Pop-Up Toy or a Jack in the Box. They seem to enjoy just having that repetitive play over and over and over with cause and effect toys. They also seem to really enjoy sensory motor type play where they're playing with squishy slime or things like that, play doh, bubbles. So that works on their visual attention skills. I don't know, Meg, do you have other examples?
Megan [00:10:50] I think also we might see in children with ASD, again, like that repetitive play, but it might not even be with a toy. It might be something that might be, you wouldn't expect a child to necessarily be playing with, so it might be opening and closing the cupboard door or, you know, getting kind of stuck in some repetitive movement that may not, you might not see it with another child.
Shawn [00:11:11] And that's exactly what my next question was, because oftentimes we see kids, they come in and their play can look very repetitive, like the opening or closing a door or even like blinds putting blinds up and down. What can you do to redirect a child onto something different when it comes to play?
Megan [00:11:32] So we try to coach families on how to enter their child's play. So if that's what their child is doing, trying to encourage families to see that as play and try to get into their world a little bit that way. So I might be joining them if they're down on the floor repetitively, you know, moving a toy back and forth, a train back and forth, we'd encourage the family to get right down low on the ground with them, maybe you start by commenting on what they're doing - trains going fast, things like that. Really simple verbal language around it. Maybe then encouraging the family to take another train and kind of copy the child's movement. Right. And try to bring some attention to them. You know, making, Simmy always says making exaggerated sounds. Trying to bring the attention to you that there's another person there that's that's trying to play with you as well. Yeah. But building on what the child is already doing. Yeah. Right.
Shawn [00:12:37] And what kind of suggestions would you give to parents if play doesn't come easy to them? Some parents think that it's hard work, it feels like more like a chore to play with their kids. Do you have any ideas or suggestions for these parents?
Simmy [00:12:53] Yeah, that's a really good question. So I just think the one thing that we really want to get across is that play doesn't have to be with a toy. And so I think a lot of parents get stuck because a) you know, they might say, well, we don't have a lot of toys at home, and what we want to encourage is that play can be part of your everyday activity, interaction, your part of your routine, part of everything you're just doing anyways with your child, even if it's just sitting with them and playing, singing a song and playing a game or getting them dressed, you can make you know, Megan and I always give this example in our in our playgroup, you know, putting their top over their head, you can go peek-a-boo and making that that's play.
Megan [00:13:31] I think just thinking about playing a little bit of a different way. So it doesn't always mean like you have to sit down and you're spending a big chunk of time focused on play. I think it's building in those, like just little playful interactions throughout the day and those can all add up. And then I think that feels a little less daunting than, OK, I have to schedule in my play from four to five when you're already thinking about all these other things as a parent that you're trying to get done. So I think it's more just shifting how we think about play and how it can be built into little spurts all throughout the day.
Simmy [00:14:03] And yeah, and also recognizing that the parents own comfort zone with play and what their values are around play. So we don't want this to be pressure or something that they feel like they have to be good at. Like I said, play is just supposed to have fun, your supposed to follow your child's lead and make anything into a playful interaction, to work on the social communication skills, to work on the fun skills, to work on the motor skills, to work on the thinking skills.
Dr. Heidi [00:14:31] OK. And so it also sounds like you don't need a whole bunch of fancy toys to be able to do that.
Megan [00:14:37] No, we often hear from families that, you know, they go out and they buy all these toys and then their kids don't play with them. Right. Right. So, yeah, we we often try to encourage families to just think about what you have already on hand and what your child is interested in. Right. So just observe your child, see the type of things that they're interested in and then go from there. We certainly don't need to go out and buy all the fancy toys because there's a good chance that they may not be interested in them.
Dr. Heidi [00:15:02] It makes you think about those stories too where they take the toys out of the box and then the box becomes the toy, and the thing that's most interesting.
Megan [00:15:10] Yeah exactly.
Dr. Heidi [00:15:12] So Simmy and Megan, do you observe any cultural differences in play? And does that affect your approach to working with parents?
Simmy [00:15:21] Yeah, so particularly when I worked in the satellite clinic, I worked with a lot of families who were new to the country, had not even heard of half of the toys that I was recommending. So I had to change my approach, and how like my expectations of even expecting them to understand how, for them to understand how to play with the toy, then expecting them to play it with their child. And maybe it doesn't meet their cultural values either, so, you know, I would have to, I would start by just asking what sort of, what does play look like in your home? And do you have any toys? I didn't want to put that pressure on them in case they didn't have toys. I don't know what their financial status was as well. So just, you know. And you know what I found some of the cultural expectations is that a lot of families would say to me, well, I don't play with my child. You know, I just give them, you know, either an iPad or put some toys out or let them watch TV, and that's play. Right. So then I'd have to do a little bit of education on that is a form of play, but the kind of play that we'd like to encourage is, again, even if it's some of that parallel or reciprocal, the cooperative play trying to explain how to get, like Megan said, getting down on on the floor with them and doing if they're interested in wheeling the car back and forth, you know, you sort of say, ready, set, go. And you want that anticipation and getting building that into play. And it's something that if that's what they're interested in, that's your play. I will say that I do change my, the way I explain play to parents who, if English is not their first language or if culturally that's not important to them, I've explained things depending on where they're from, like when I explain wheelbarrow, I can't expect everyone to understand what that means, so I will give an example. I used to say to this one family in particular, they just happen to be from India. I say, well, you know how you hold a rickshaw because they all understand rickshaws in India. That's how you hold your child's feet and they walk on their hands, and they started laughing and they just said oh. But they understood the concept. So I changed my language. And sometimes I just get down and show them and they'd laugh. But then explain what it's working on in terms of, you know, posture and motor, you know, their gross motor movements, and strengthening and things like that.
Megan [00:17:54] I think it's important to be aware of, you know, the culture values around play, but also just the the families, their own background, their own upbringing, they may have not had, that may not have been something that their parents did with them. So they may not see that as important. So, again, it's a lot of education about why we play and trying to help understand that, but recognizing that not everyone is comfortable with that, so working within the family, each family is kind of unique situation and values around play.
Dr. Heidi [00:18:25] So that's so interesting what you were talking about in terms of the cultural differences, not just in parents playing with their kids, but how they might be viewing childhood in general is potentially a time where they're spending time with them and being actively engaging as play participants, or in some cultures they might be thinking of childhood more as a time when kids are kind of doing their own thing and being more independent. And what I like about what you said Simmy is that you're giving this kind of holistic point of view around play. So it's not just about having fun, but it's linking these other skills around like communication and social interaction and the gross and fine motor skill development as well. So it's really kind of showing parents how significant play is in terms of their development.
Simmy [00:19:14] Yeah, yeah, exactly. And I and I also think that, like with some families, what some of the comments have been was that their mother will play with them. And what I want to get across is that, but you can as as their father, also play with them, and it's not really, it's not role specific. Play is fun. But you're working on if you know, the common goal is to have fun, but to work on all these like like all other skills, like motor and sensory and thinking and cognitive, and that, you know, even whatever way even throwing a ball back and forth, something like that, if a lot of dads feel that's more comfortable for them, that's fine, too. But we just teach a different way, so maybe waiting and let your child anticipate and request back before just throwing it back and forth because you're we're just teaching them how to play a little bit differently. And so that they're still part of the process.
Dr. Heidi [00:20:12] Yeah. Even just being flexible. I did an assessment the other day with a little two year old who made a game out of putting his dad's flip flops on his feet and alternating them back and forth between his own feet and dad's feet, and it was hilarious.
Simmy [00:20:27] Yeah.
Dr. Heidi [00:20:29] Yeah.
Simmy [00:20:28] Exactly.
Dr. Heidi [00:20:30] So to help parents really think concretely about developing their child's play, can you give us a sense about what kind of environment to create? So what could a good play space look like?
Megan [00:20:44] That's a good question and we do talk about this, too, with the families that we work with. And we hear lots of questions around this, like how many toys should I have and what should the space look like? And we often say, like, try not to overwhelm with too many toys, right. Because when there are too many toys, then what we see happening is that the child might just move really quickly amongst all the toys, like going back and forth, and not really ever kind of sitting and playing with one toy in particular. So we talk a lot about, you know, maybe organizing the toys in certain way, so maybe putting them in bins, labeling the bands, have pictures on the bands so the kids can easily see what's inside. But what that does is it creates an opportunity for the child to maybe, like request the toy or they have to point to it or they might have to bring the bin to the parent if they can't open it up on their own. So it creates opportunities for interaction. And then also we talk about, you know, again, not having too many toys all out at once. So you might just have a couple of bins, hide the rest for now, work on building skills with the toys that are available, and then you can rotate them around so that, you know, it does create some more interest and keeps kids from getting bored with the toys.
Dr. Heidi [00:21:54] It makes me think of my office when I have too many things out, I'm like, what should I do?
Megan [00:22:00] Yeah - it's the same for kids, right. When there's too much in the environment, a lot of the kids that we see, too, you know, do have difficulties with attention or they can easily become from a sensory perspective, might become overwhelmed with a lot of visual interplay, right. So that can be really distracting. So what we find when there is, you know, a safe, comfortable space with not too much going on it actually creates a nice positive environment for building a play skills.
Simmy [00:22:24] Yeah. And the other thing. It depends on your living environment. So if, you know, if you live in a condo or apartment, then you know, your living room can be your play space, your bedroom, you don't have to have a specific play area, with some families that do live in houses that if they have a basement we've made suggestions on how to create a sensory space at home with, you know, maybe having a tunnel or a tent or a ball that they can bounce on or a mini trampoline. But it's not necessary. It's only if it, it depends if they're working on the sensory skill, if that's, if your child is a sensory seeker like we talked about earlier, then that's sort of a good way that you can incorporate play if you have the space.
Dr. Heidi [00:23:09] Yeah,.
Simmy [00:23:10] And we make it very tailored for the child's interests and what their abilities.
Megan [00:23:17] Yeah, again, based on their sensory needs.
Simmy [00:23:19] Yes.
Megan [00:23:19] Yeah.
Dr. Heidi [00:23:20] Yeah. So this next question, that might be hard to answer this next one then, we've talked about you don't need a whole bunch of toys per say, but are there some good basic toys to have at home, depending on kids developmental levels, like what would you advise for a kind of like infancy-toddler hood and then the preschool age and then the school age?
Simmy [00:23:43] Yeah, so I Iike to break it up into more the skills right, from an OT perspective. So like, if I were to talk about fine motor skills, I would say things like Lego. You know other fine motor toys are there?
Megan [00:23:59] Like if they're younger, like bigger blocks. Anything that they work on, like stacking, building and like a lot of those construction type skills.
Simmy [00:24:07] Yeah.
Megan [00:24:07] Toys are good things where they can have to use two hands together. So things that you push together, pull apart any toys like that. So we love to go for...
Simmy [00:24:16] Velcro Fruits.
Megan [00:24:17] Are good for that...
Simmy [00:24:19] The beading, the pop tubes. And then for things like sensory motor play, like sandboxes,.
Megan [00:24:26] Water play.
Simmy [00:24:26] The water play. Oh, slime, bubbles, and then the cause and effect are like the Pop-Up toys. I think that's it for cause and effect. Yeah. So we just, yeah we look at ages but we also look at which goals they're working on. And then imaginative play, like let's pretend to play doctor or Tea Party or things like that. And we always say the Dollar Store can be your best friend. You don't have to go to Mastermind or Scholar's Choice or you can go to Wal-Mart, Dollar stores, there's a lot of toys that you can buy that are inexpensive, that also meet all these goals.
Dr. Heidi [00:25:07] Yeah, yeah. That's good to know. I don't think we can fully talk about play without mentioning children's use of electronics. What do you think parents need to consider when they're trying to balance out use of tablets, phones and videogames with other kinds of play?
Megan [00:25:26] I think it's exactly what you said it's a balance, right. So finding what works for your family and your child is one thing, right? So, you know, knowing that there is a time and a place, probably in each household, you know, when there might be appropriate time for tablets and things like that. But I think also just knowing that that's good for some skills, but then we also, other types of play help develop all the other areas of development as well. Right. So just trying to figure out that balance what works best for each family and child. So I think it's a combination of, you know, the tablet time, but then also thinking about the other areas and trying to incorporate time for that as well.
Dr. Heidi [00:26:07] Sometimes I even just highlight with parents, too, like you mentioned, like the different types of skills and helping parents to identify what those skills are. Right. So when you're using, like a tablet and those electronics, it's very predictable, right? It is, in a sense, almost cause and effect at times. Right. You press something and then it can be a very predictable response. Whereas when you're dealing with other people, people are very unpredictable. And so the social skills and the problem-solving and the negotiating and perspective taking becomes more important.
Megan [00:26:41] Exactly. And even just movement. Right. Like, so many of our kids need a lot of movement. And you don't get that as much when you're sitting still with a tablet. Right. So thinking about that, too, and what all those gross motor, all that sensory motor, what does that do for a child's development, their body awareness and all their other skills that develop from there as well, so, again, just as you mentioned, just thinking about all the other ways that we can play and why why that's important too.
Simmy [00:27:10] Yeah. And part of our role is also just to educate parents around different types of play. We don't want to say that a tablet is bad and we wouldn't. But just trying to have them become comfortable with other play that they can try to engage their child in, because, you know, like Megan said, the goal is to also encourage like, when they're just looking at a tablet, not much is happening in the in the brain. So we want that sort of reciprocal back or some kind of, you know, excitement about something that you're in joint attention like I say that you can get out of playing with a toy or not a toy, even just a game in general. You know, we don't want to just limit it to toys. And I really, but again, I we're not here to judge and, you know, parents have to make that decision on their own. I just try to encourage being the comfort around play and why it's important and what skills develop out of having that interaction. And it can be, and again, I agree with Megan you limit you can limit the screen time.
Dr. Heidi [00:28:21] And there's also some really great recommendations from the Canadian Pediatric Society around that, too. So if parents go to that Web site, they can find that listing.
Simmy [00:28:30] Yeah.
Dr. Heidi [00:28:31] Yeah. With young children, with ASD, many parents are concerned about enrolling them in structured activities like soccer or dance. I work with a lot of parents who they've tried to do those types of activities and they maybe haven't gone so well. Kids attention levels are low or they're more focused on their own agenda rather than what they're being asked to do. What are your thoughts about that? Can it be good to have a mix of structured versus unstructured activities?
Megan [00:29:03] Yeah, I definitely think so, and I understand the different reasons why it could be more challenging for a child with ASD to participate in and some of the typical recreation programs. But there is some value in that. We look at, you know, what types of recreational activities might be a little bit better suited for kids with ASD based on like potentially any motor planning issues, attentional issues, so we look at more individual type activities, but still within the social context. Right. So things like gymnastics, karate, martial arts, swimming. So that allows the child to kind of work at their own pace, develop their skills at their own pace. But they're still within the context of a social situation. So they still create opportunity for some of those social interactions. So we look at that and then there are, I think there are some programs out there where the instructors are better trained and have more knowledge around different diagnoses, ASD and things like that. So looking for, we have some common ones that we will recommend to families around that, that might have a better understanding of how to work or how to teach a child with ASD to better support their development.
Simmy [00:30:15] Yeah, just like those three activities we usually recommend gymnastics, karate, depending on their age, and swimming, because they work in all planes of movement, you know, vertical, horizontal, diagonal. So they're moving their body. And, you know, I often say to parents, parents will say to me, sometimes they're just they don't even participate, they don't understand what's going on. They're walking off. And I said, I can understand that they don't want to waste their money or time, and I completely understand. But I've tried to encourage what they are getting from it, even sometimes just watching and, you know, trying to be interested in another another child, that's sort of the goal. So I'm trying to put a little bit more positive spin on why they're doing it and why it's important. And again, it's only if it fits into their schedule or their, you know, their values and their financial situation and their timing. But you can even do like home yoga. You can do so many things at home. It doesn't have to be in a structured, but I agree with with Heidi what you're saying, a balance of structured and unstructured, depending on your child's interests.
Dr. Heidi [00:31:17] Yeah. Yeah. And I like how you highlighted Megan to the idea of like potentially like talking with instructors ahead of time as well, because, like, that preparation could make a world of difference. So even just thinking about an instructor who like, like every kid in a line has to do something and then you're left waiting for a long time vs. like having kids remaining active and engaged. Right. So there's not a lot of downtime when things might go off the rails.
Megan [00:31:46] And that might be something, too, that families could look into before they actually, you know, fully register and pay the money, you know, contacting the organization. Is it possible to come and do a trial? You know, these are my child's strengths. This is where they might have trouble. This is what works in terms of helping them understand instructions, things like that. So letting the instructors know kind of what to expect, maybe giving them some strategies, but then also preparing the child, too, ahead of time. OK, so we're going to go to this new program, you know, and helping prepare them and giving them the tools so they can be more prepared in terms of what to expect can go a long way to to making it more enjoyable for everyone.
Shawn [00:32:25] So some play might also be considered sensory seeking behavior. How would you describe what sensory seeking behavior is and what can kids get out of play sensory wise?
Megan [00:32:37] Right. So in terms of sensory seeking behavior, I think we have to understand a little bit about sensory processing and what that means is that so we have our different senses, so how we respond to sound, how we respond to touch, how we respond to do visual input. So we have all of our different senses and there are times where our sensory system needs more of a certain type of input. So for some of our children with ASD, we see in terms of the visual or in terms of touch, their sensory system kind of seeks or craves more of that. So we might see them engaging in a lot of play where they're trying to fulfill that need from a sensory perspective. So that might be a lot of they're looking at things visually. So things spinning, looking up really closely at the wheels of toys, cars and things like that, spinning because, again, their sensory system needs more so the child's actively trying to find ways to get that. So I think that's what you referring to in terms of sensory seeking behavior in play. But also just sensory play is an important part of play, and that can provide a lot of benefit to a child's overall development. So sensory play might be playing, you know, tactile kind of sensory play, that's what a lot of people think about, so playing with sand and water and things like that. But it also involves like our whole body movements. A lot of our kids with ASD, like a lot of movement, they need a lot of movement. So a lot of like the swinging, going upside down, jumping off things, because, again, they're trying to kind of fulfill that sensory need. And then on the other hand, we have kids who are, you know, more adverse, so like avoid sensory input. So they might avoid certain play activities where maybe it's too loud, certain toys that are too loud, or certain and play environments that are too loud. So you might actually see those kids kind of shying away from some of those play activities. And it could be because their sensory system is overwhelmed by that input.
Simmy [00:34:34] Yeah, and also, like when you when you think of think about the playground and things like that, you just have to, some kids might have some gravitational insecurity. So when they're on a swing, they they might start screaming. But, you know, it's just boom, their feet leave the ground, so their body's in a different position. So just keeping aware of that or they might be afraid going up a side or going down a slide or they're the opposite. They're just they have poor safety awareness, they just climb everything because they're just their bodies seeking it. They need it. But yeah, like Megan said, like the all the the touch type sensory seeking, the visual, the movement we see the most, I would say. So all the ones that Megan mentioned plus maybe bouncing on a ball or dancing, jumping, spinning around, you know, in circles, if you play hokey pokey, you know, head and shoulders, anything with music and movement is a really good way of meeting that need.
Shawn [00:35:29] OK, is there anything else you wanted to say to parents who are currently on the waitlist for an ASD assessment? Is there anything that they can start doing now at home to help with their child's play?
Megan [00:35:40] Yeah, I think it's important just to think about you know play looks different in every family's home. So work within, you know, what the parent themselves is comfortable with, where the child's at in terms of their play skills. And again, just really focusing on, you know, your child's skills and their interests and then following your child's interests. Because we do these workshops, we hear from families all the time play looks very different in everyone's homes. I think it just a matter of focusing on your current environment, your child's skills, your comfort level and working with that.
Simmy [00:36:11] Yeah, yeah. Yeah. And I would just say a couple of take home messages again are just remember, try to really, you know, get face to face with your child. Finding, like it doesn't again have to be remember toys don't have to be objects, they can be your everyday routine. And I'd say the last biggest thing is just have fun. Play should be fun. It shouldn't be a chore. You shouldn't feel pressure around it. It should be fun. And anything you're doing in your day to day routine, you can make into a game.
Shawn [00:36:41] That's great. Thank you so much for joining us, Simmy and Megan. We learned a lot about play today. And thank you for coming on.
Megan [00:36:49] Thanks for having us.
Simmy [00:36:50] Thank you so much for having us.
Dr. Heidi [00:36:53] If you've listened to this episode and have comments or ideas that you'd like to share with us regarding future episodes or what you heard today, feel free to email us at ASDengage@hollandbloorview.ca.
For young children
For school-aged children and adolescents
Dr. Heidi [00:00:11] Welcome to ASD Engage a podcast for families of children who are currently waiting for an autism spectrum disorder or ASD assessment. I'm Dr. Heidi Kiefer, a clinical child and adolescent psychologist.
Maureen [00:00:24] I'm Maureen Mosleh a psychometrist.
Maureen [00:00:43] You'll hear information regarding the assessment processes and insights and information from a variety of specialists. And more importantly, we'll talk directly to families who share some of their personal stories with us in an effort to help guide you through the assessment process.
[00:01:00] Welcome to the ASD Engage podcast. In this episode, we focus on the issues that may exist for people on the spectrum in terms of how they process everyday sensory information. In fact, research suggests that up to 96 percent of children with ASD have sensory processing difficulties. We'll be exploring exactly what sensory processing is and how differences among children can affect behavior and have a profound effect on their lives. To delve into these topics, we're talking with Moira Pena, an occupational therapist at Holland Bloorview Kids Rehab Hospital. Moira is an expert on all things sensory and has experience not only working at the hospital, but also in private practice and school board settings. She's also done a tremendous amount of parent education about sensory processing and created valuable tools that we'll share with our listeners at the end of this episode.
Maureen [00:01:55] So welcome, Moira. Thanks so much for joining us today on this podcast episode. Can we start off maybe with you explaining what you actually do at Holland Bloorview and also how you got involved with the ASD population?
Moira [00:02:09] Sure, thank you for having me. So I'm an occupational therapist, which means that I look at three areas of kid's lives and that's self care, so how a child may look after themselves like toothbrushing and haircutting and so on. Productivity, so going to school, and leisure, so what a child and their families like to do. And what we do is we enable and we provide strategies and work with the parents to enable all of those areas. And I've been here for 13 years, working with kids and autistic youth and love it. So I used to do more, I do assessments and I also do consultations, I do a lot of training for parents. So, yeah, it's uh I love my job.
Maureen [00:03:02] That's great. Tell us a little bit about how you got into working in ASD.
Moira [00:03:09] Yeah, that's kind of an interesting story. So when I became an O.T., I actually wanted to work with adults and I wanted to work in the field of eating disorders. So I moved to England because I couldn't find a job here in Toronto and I worked in London, England, in an inpatient unit. And what I noticed was that there was a group of women who had lots of challenges around eating, but their issues weren't around wanting to lose weight or to look a certain way, which is very much something that happens in anorexia, it was all about the sensations that they felt whenever they ate and how they just couldn't. And so they would tell me you know that the smell of that food or the texture of that food, or how it feels in my mouth and all that. And so it was so interesting to me. And now, you know, 20 years later, I realized that they were autistic. This group of women that no one could figure it out. And the team actually used to identify them as eating disorders NOS, not otherwise specified, because they just could not figure out. And of course, now we know so much more, and we recognize that feeding and eating is such a challenge because of sensory issues. And that's when I kind of became interested in that whole field. I came back to Canada and I wanted to learn more, and I knew that the field of sensory processing and kids, what's really, where all the research was at. And that's how I got into it.
Maureen [00:04:48] So it was actually quite a natural evolution for you almost into this field.
Moira [00:04:53] It was. It was such an interest. And then I came back and I looked as to who was doing the kind of work that I wanted to do, and I contacted her and she took me on. So she trained me for seven years before I came to Bloorview.
Maureen [00:05:05] Oh, that's great. Oh, well, we're glad you're here.
Moira [00:05:08] Oh thanks
Maureen [00:05:10] OK. So when we hear the words sensory, people typically think of the five senses like seeing, hearing, tasting, smelling and touching. But it's a lot more complex than that, right. So I'm wondering, can you just describe for us the different sensory systems?
Moira [00:05:26] Yeah. So there is those five that we all know about and there's actually three more. So there's eight in total. So and the ones the three that people don't hear about as often, I call them the hidden senses. And one of them is the vestibular sense. So it's your, the sense that tells you whether you're moving forwards or backwards, whether you're spinning in circles, whether your head is upside down, and so you can imagine that if you are not secure in that sense, that the fear that that might bring up in you, right. So if you're not completely sure, as to you know, where your body is in relation to gravity, that might make you anxious. And we see that all the time in the kids that we work with. So that's the vestibular sense.
Dr. Heidi [00:06:12] Is that the one that we would experience on roller coasters and rides and stuff like that?
Moira [00:06:16] Absolutely. And there's even more like, you know, there's people who actually seek vestibular sensation. So they like, we call them sensory seekers. So they love roller coasters and they love, you know, even like high, almost dangerous kind of experiences. And when you see kids, for example, jumping from high places, spinning, um running back and forth, moving in a certain way, putting their face, not their face, like moving, putting themselves in positions that look kind of odd. What they're doing is activating their vestibular sense. So that's one. And then the second hidden sense is the proprioceptor system, so proprio means like our own, so property, and ception means feeling. So is your feeling of yourself, your body boundaries, like we tend to call it like body awareness. And of course, what you may see is that a person on the spectrum might actually come too close to you or leaning to you or push into you, because what they're trying to determine is where their body ends and somebody else's begins. And so, again, you could be seeking proprioceptive input. So, for example, you could sort of grab a pencil and just break it because you're holding something so tightly. And also that sense of like, for example, you know, you know, when you're going to the fridge and you open the door and you pick up the milk and you're predicting how heavy that milk is going to be, and then it goes because you know all of that, that actual milk is actually empty. So all that might not be working as effectively when you have sensory processing issues. So you're constantly, it's what we call your grading of movement is kind of off. So it's either you you do things really hard or really light. It's really hard for you to actually grade your movement. So that's proprioception. And then the last one is your intraception and intraception, intra means inner, ception means feeling, and so it's how your internal, how you get cues from your body internally. So are you hungry? Are you thirsty? Do you need to go to the bathroom? All these signals that we get sometimes in people who experience sensory processing differences. They either don't get those signals as quickly as we want them to get it or they get them too much. So they have an under reaction and an overreaction. So very often what we see is that kids and youth on the spectrum are not able to tell us when they're hungry, or they may not feel the hunger pangs that we all do. But of course, they're hungry. And so they just become cranky because they haven't eaten in hours. But they're not able to tell us, you know, it's actually I need to eat or thirsty. How many kids doesn't drink water or they just don't seek it because they're not getting those cues. And of course, toilet training, toileting is the whole thing. And it's very often because of this intraceptive cues that they are not getting in time to make it to the bathroom.
Dr. Heidi [00:09:45] So these hidden sensors are really important.
Moira [00:09:49] Yeah. They are.
Maureen [00:09:50] And it's interesting how they're so closely linked to the feeding issues that we talk about, toileting, and I'm guessing also sleep is another sensory thing that children aren't really that aware of and don't know that they needed that.
Moira [00:10:04] Of course. And, and I think it's so important for us, you know, when we're talking about reframing behavior from a sensory perspective, and, of course, for anybody, if you're not sleeping well, you are going to be cranky and unhappy the next day. So it works for everyone. So, of course, with our kids, we just need to have an understanding that if if sleep is constantly disrupted for whatever reason, then yeah it's going to be harder to actually function to your best potential the next day. So I think even just being able to reframe what we see and to know that is not your fault as a parent or the fault of the child, it really is the sensory systems that are not functioning together as effectively as we want them to be.
Maureen [00:10:57] So building on some of what you've just talked about, what does sensory processing actually mean then? And you kind of alluded to it before as well when you talked about sensory seeking versus sensory aversion. Can you talk a bit about those?
Moira [00:11:12] Yeah, sure. So when we think about sensory processing, so it's the way that you take in information. So, for example, right now we're in a room, there may be sounds outside, you might be moving, and, you know, we're talking about fidgeting before, like, the way we fidget, you might be thinking of something that might have happened at your home before, but you're able to actually tune that out because you're here and you're doing an interview. Okay, so you're able to actually, your sensory systems are able to tune out what's irrelevant. And a lot of our kids can't do that. So all they can actually think about is the noise outside or what what happened in the morning. It's very hard for them to tune out irrelevant information. Sensory input. So that's when you take it in. And then the brain, amazingly, actually organizes all that in an unconscious manner. So effective sensory processing means that you don't have to think about it. You just do it. You just notice what you need to notice. Like in a school, for example, you're listening to the teacher and you're tuning out everything else, and how many of our kids cannot do that? Right. They just, especially noises, they just can't manage the cafeteria or whatever else, they're not able to tune it out. So you process all that information unconsciously, and the issue comes when all of a sudden it comes to your conscious brain, it takes up real estate in that brain, so then, of course, you don't have as much space to problem solve, to use your nice words like please and thank you, because your mind is being taken over by sensory input that should be processed in an unconscious way that you don't even notice. And then your last step for sensory processing is execution. So it it's your behavior. It's you know, how do you manage less sensory input? How do you what we call modulate it, so how does your reaction match this sensory input. So of course if you are a sensory seeker, it means that your, you know, you're looking for more because it's almost like you need more to be able to bring yourself up to a regulated state or what we call like a calm and alert state. So you could be a seeker or you could be, and this is what we see most often, and we call it sensory over responsivity. So you are overreacting to sensations that other people can manage. So the texture of foods, the sounds, the tags in clothing, the seams in your socks, and we can go for a whole list, right. All these sensations that you're not modulating as well as a brain, as well as you know, you may want to. And then you go into this sensory overwhelm where then you're now not able to function.
Maureen [00:14:15] That's great and clarifies alot actually. I've always wanted to know what does or how does an OT or an occupational therapist actually go about assessing sensory processing?
Moira [00:14:28] So the same way we, OT's assess three areas of life. Remember that self care, productivity and leisure. So what you need to do. So how do you manage throughout your morning routine. What you want to do, that will be your leisure, like what kinds of activities you want to do during the day, and what you have to do, so as an adult, that would be work or volunteer work, for kids that's going to school. So we look at those three areas and we use we use what we call an eclectic approach. We use different approaches, behavioral lenses, sensory lenses, all kinds of different things. For us to actually become detectives, to try to figure out what's driving behavior. And then in partnership with families, we then work together to come up with strategies and solutions to be able to then manage your days better.
Dr. Heidi [00:15:31] Moira, I really liked the way you explained sensory processing and how that idea if it, if it's not happening on an unconscious level, it's actually taking a lot of mental effort, right. And so for people on the outside, right, to do that perspective taking about what might be going on, that's really important that it might be taking so much mental energy to manage that sensory processing. And so professionals such as us who are working with kids, we might often use kind of like an iceberg model to explain children's behavior. So we're, we could explain it as seeing like certain feelings or behaviors that are seen at the surface. But it's also important to consider what might be underlying them just as a huge portion of the iceberg is hidden beneath the water. So for us, like at Holland Bloorview, we see a lot of young children, especially under five. And in those young children who can't tell us what's going on inside them, we often focus on what we see that they're doing or how they're acting, which can look like sometimes tantrums or meltdowns. So I'm curious Moira in your experience, what do parents come in typically attributing those behaviors to?
Moira [00:16:44] You know, that was so well said and I use iceberg models all the time, and most often parents are here because their child is tantrumming and having all kinds of meltdowns. And it's just very hard, for example, to do a transition from the home to the park and so on. And so what we do is we actually look at like all the possible we we brainstorm on what could be all the possible reasons why this behavior is coming up. And so I always talk to families about your kid. Well, you know, what could be your sensory triggers? And it's so interesting because, you know, even things like what I call eat, play, rest. You know, are they eating, well not really. How long do they go? Even if we just focus on those basic levels of what can be done. And not asking a child if they're hungry, just offering the food and trying. And, you know, the rest like to sleep, as you said, and are they playing, those things can help you be regulated in such a way that maybe then sensory input is not as overwhelming or noxious. So even just focusing on that. And we do a lot, we talk a lot about, you know, what could be happening in your environmental context at home that is causing this behavior. So, for example, if we go back to eating, you know, is there a garbage can nearby? Could the smell be causing something that the child is not wanting to go into the kitchen? Could we move, you know even a simple, like I remember working with a kid who we just couldn't figure out what the issue was about going into the kitchen. He would not go into the kitchen. He would just cry and meltdown the minute he had to cross that threshold. So we looked at the environment. OK, are there noises that we're not, like, where's the fridge? Is that fridge making noise that somehow we can't, we're tuning now, but he can hear, what, and of course, the child couldn't tell us. We went through, you know, is is there something around the chair like the texture of the chair? Is it too hard? Is it too soft? To eventually coming down to oh, my goodness, this the garbage is right there, it's the smell. And once we remove the garbage, that was it. It was that his sense of smell was so sensitive. So he was again over responsive to smell. And you know, your sense of smell actually, is your one sensory system that doesn't get processed by your thalamus in your brain, so it goes straight to your limbic system, like to your emotional brain. So smells, you know, and also to your memory. So, you know, a smell can actually bring you back to your grandmother's house or whatever. So smells also cause this emotional reaction, so of course, what you're going to get first is the emotional meltdown, because, you know, it's a direct sense, so by the same token, what you can do is use smells strategically to help you manage emotions. So what are the smells that your child likes? Is it lavender? Is it lemon? What is it? Can you before you go into a difficult transition, can you have that child smell that preferred scent? And will that then help you in managing that transition? So there's many ways that we can use sensations to actually support function. And that's what I help parents figure out.
Dr. Heidi [00:20:24] I love that example, too, because I think it's really reassuring for parents, too, that because they're coming in and a lot of times these behaviors seem mysterious. What's causing them? Right. And then you as a professional are also having to do a lot of detective work to break it down, what might be going on, what might be triggering that emotional reaction.
Moira [00:20:43] Absolutely. And, you know, we always have to go when we're working, when we're talking about kids, my own kids, all kids. Is we have to go from the premise of us as Dr. Ross Green, who wrote The Explosive Child, which I actually recommend that book a lot. I love that book. He talks about how, you know, kids do well if they can. And it's not kids do well if they want, right, it's kids do well if they can. So if they can't, if what we're seeing is like over and over these over the top behaviors, then we as adults need to help figure out what it is that may be causing that actual barrier for that child to be able to function to their potential. So, yeah, definitely working together and seeing, okay, and everything that we do from a sensory lens is what we call a proactive solutions model. So we prevent, we prevent meltdowns from happening as opposed to what a lot of people do is they give a sensory input or a sensory toy after the meltdown. Well, it's not gonna do anything. Everything that we do is, is to actually look for patterns. When are the most challenging times in your day? How can you make you know, what can you do to help that child enable, function during that time? And actually, after a meltdown, like there is no talking, there's no you know, we do a lot of like, you know, what did you do wrong? And asking kids to apologize. You know, most kids don't even remember what their meltdown was about because it's such an emotional heightened state. So we need to do everything that we do is more around preventing proactive solutions and not in the heat of the moment because nothing works in the heat of the moment.
Dr. Heidi [00:22:31] I agree. I love Ross Green, too. And I like what you commented on about children do well when they can because then it also reframes the idea like they're not doing it intentionally. They're just overwhelmed.
Moira [00:22:45] And it may feel like, you know, they just know exactly what to do to upset you, like definitely. You know, sometimes, with my own kids I have to stop and say, you know, like this is like, is he seriously, he's eight of course he's not, is he seriously, like, manipulating me and such. And then, of course, you have to step back, and this is another thing that that we as parents and as you know, when we're looking at using a sensory lens, is this idea of, you know, stopping and how can we co-regulate? What can we do as parents with our own tone of voice, with our own body language, with how we talk to children? What can we do so that then we're actually modeling that at least that behavior in some way. So, of course, you know, like the yelling and that that what you like, you know, the punishment rewarding. Well, if there's something else we can do, can we step back? Can you count to ten before you react and to know that this is a child and no, they're not, they don't have the executive thinking skills to actually do things to manipulate you because executive function skills don't really develop until the age of twenty five and then some, right, and then some as we all know. So really thinking and looking at that iceberg and what the trigger is, what could be happening and going at it from that, from that point of view.
Maureen [00:24:15] Super interesting. So, Moira, and now preinterview before recording today's episode, you highlighted that a child's first birthday can be a benchmark for helping parents notice the child's sensory sensitivities. Can you tell us a bit about what you meant from that?
Moira [00:24:33] Yeah. So if you think of a birthday, there's a lot of sensory input going on. So, you know, the singing of the Happy Birthday and very often what you will see if the child has sensory processing issues is that they will cover their ears and they would, or they could get super loud because, you know, when kids are able to control sound, then they become louder to try to actually dampen the sound that they hear in the background. So it's very interesting because sometimes people will say well my kid's very loud, of course, he's not sensory sensitive in the auditory sense, I'm like if he's very loud, what he's doing, he's trying to block the noise that's coming at him with with a noise that he can control. So so in a first birthday party, there's also like lots of people. So, again, remember, kids will react to just having, you know, to crowds and the echoes that may happen with the singing and the clapping. The clapping is a big one, and you will see kids running out of the room. And also, you know what's interesting about birthday parties, because sometimes I think, you know, it's it's funny that we do them for kids because kids get really stressed like in general. And the reason why that is, is because they come over aroused like they're almost like over, you know, it's a heightened state of sensation. And when you are in a state like that, then sensory input is even more powerful. So that's why it's so important to try and keep ourselves in a self-regulated state, because then we can better manage sensory input. But say if you sort of you know, if if you were late, and you're already, like, anxious and, you know, you your sensory systems will kick in even more strongly. So there's a total link and we know this from research it's actually a proven link, that anxiety will increase sensory over responsivity, right. And so sometimes if we're able to manage the anxiety, we're then more able to manage this and see the sensation, the behavior output of the child. Yeah.
Maureen [00:26:42] It's funny you say that that was the very next question I was going to ask you was, does anxiety play a role in the presentation of sensory behaviors? So very much so.
Moira [00:26:50] Absolutely. And before we just used to say that because we saw it in practice and now we have more and more research that tells us that actually, you know, well, we just don't know if it's the chicken or the egg. Is it the fact that your sensory over responsive and so that makes you anxious because the world is unpredictable, because you don't know what's going to come at you, or is it that you're anxious and that makes you more sensory over responsive? Because again, and so it's interesting, but there's definitely a link. Sometimes you see like fascinating things like what we call intraceptive conditioning. So this idea, for example, a child going to school when we get back to school, hopefully in the next few weeks, a child going to school and actually overreacting to the bell, right, to the sound of the bell. And eventually what happens is that the child has the same sensations just by the sight, like the bell doesn't even have to go out, it's because their body has conditioned that response of over responsive, overreaction, overwhelm, and so they're already, it's already preempting that behavior without the thing going off at all. And so it's you know, our bodies are so fascinating and how they adapt. But that's what's going on there. So there's a definite link with anxiety and the over responsive presentation of sensory processing differences.
Maureen [00:28:19] So it's interesting. So even the anticipation of the event creates the anxiety in the child.
Moira [00:28:27] It can, so but at the, by the same token, look at all the things that you can do then, right. Because then what you can do is actually work on giving the child lots of strategies and information and pictures as to what's going to happen to be able to manage that anxiety, and then they might be able they might be better able to manage their bodily responses.
Maureen [00:28:50] Mm hmm. Interesting. I know you've kind of talked a little bit about this, but can you describe some of the common sensory behaviors that you see in the children with ASD?
Moira [00:29:03] OK. So remember, I talked about modulation and there's actually three different types of sensory modulation issues. The first one is sensory and the responsivity, and that's like SUR, sensory underresponsivity. So that would be a kid who you'll call their name and they just did not react to their name being called again. All those intraception issues around not feeling things the way they should be feeling, hunger, thirst, going to the bathroom. These kids tend to like to lie on the floor a lot because it's almost like they need you know, they're underresponsive. So they need more input, they need more almost like more touch, and they actually will come up to you and they they will push themselves against you. They will ask you for, like, bear hugs. And they're looking for sensations for them to be able to function. And and the responsive kids don't tend to have over-the-top behaviors. They tend to sort of fall through the cracks, but they're more like sort of in their own world. Then you have your sensory over, you know, overresponsive of kids. You know, everything is an issue, the light, so you have to wear sunglasses when you go out, you have to wear a hat. The sounds they're covering their ears. So, of course, you know, you do want to give them a way for them to be able to manage that better. So you think most ear cancelling headphones, for example, what I call ear defenders, the noise. The clothing. I mean, how many of the parents listening today I'm sure they're washing the clothing 10 times until it's soft enough, and, you know, and how often do we hear that the parent is actually buying the same, like 10 pairs of the same underwear, because, my goodness, you finally found the right underwear that this child will actually wear. I mean, it's it's so interesting. And the shoes, you know, how many of our kids it's wintertime and they just want to wear crocs. Right. They can't manage the boots, the snowsuits, the, like the clothing is such a big issue. And you can imagine how that if you're constantly worrying and stressing and anxious and overreacting to clothing, that's going to make life very difficult. Haircutting right, hair cutting like they can't handle the noise of the clipper ,going to the hairdresser, like even some kids I've heard and I've worked with families whose kids could not shower because they felt like the the water, they're like pins, like the way and the way they describe these things, you know, for kids who are speaking, who I remember my first kid at Bloorview, actually, I'll never forget him. He's he was 12. And he said to me, I can't be in the in the classroom. I go, why not? Because when the teacher writes on the blackboard, I mean, this is like 13 years ago, right? When the teacher writes on the blackboard, the noise that she makes with the chalk makes me feel like I have a hundred knives going into my body. And I remember thinking, well, that's a bit dramatic, right. But the reality is that's how it feels. And that's what autistic people are telling us all the time. And what we're doing now in 2020 is that we believe it. And then we take that lived experience and we take it into a clinical practice, because I may not be feeling that, but I can hear that that's how it feels to you. So it's no longer about overdramatizing things that's just how it feels. And so, yeah. And there are so many and I'm sure lots of people got, you know, so many behaviors that are happening because of these sensory processing issues. And then the last because I talked about three, right. SUR, sensory underresponsivity; SOR sensory overresponsivity, which is where most of the research is, actually, it's in that cluster of kids. And then you have what we call sensory cravers, SC. Sensory Cravers are actually a cluster of kids that we don't really know a lot about because these kids, they seek sensation to such an outrageous extent. So they're they're running against walls, falling on purpose, pushing others on purpose, simply, it's not because they're trying to be mean, it's because of trying to seek this and say they are, you might see it in the ways that they may bite things really hard and they break things. And yet we give them sensory, helpful sensory input and sometimes it's not helpful it's because we're not quite sure what's going on with those kids. But those are rare. Usually we have a combination of the first two. But, you know, again, sensory processing is an extensive like there's actually two other types of presentations, more motor or like movement types of presentation, but I'm talking about the most common, which are sensory modulation issues, because 80 percent of the kids that we see in clinic will and will be kids that are having those sensory modulation issues.
Maureen [00:34:13] It's interesting because when you talk about the child reacting to the teacher writing on the chalkboard, a lot of people had this reaction to fingernails on a chalkboard. Right. And it almost brings about this physical response, and you and imagine not being able to control that, like sitting in the classroom, that's all you can think about is any minute those nails are going to go right? It's easy for us because we can't control that. I couldn't imagine sitting there not being able to handle that anxiety.
Moira [00:34:39] And then to go back to your point, Maureen of the anticipation, that noise is going to come at me. And so then, of course, you can't think of learning on your own, you're not learning anything because all you're thinking about is that is that sensory input that's going to come at you.
Maureen [00:34:53] Oh, that's such a good illustration. There's often discussion also about how ASD can look very different from males versus females. So is there a difference in the kinds of sensory behaviors that you might see in girls versus the boys?
Moira [00:35:08] Oh, yeah. This is the whole, like I don't know how much time we have, but I'm going to keep this short. Girls and ASD is a whole different topic. But I would say when it comes to sensory processing, very often what you will see is that, of course, girls tend to be diagnosed way later than boys. And there's a lot of reasons why that is. But in terms of sensory, you very often they enter the mental health channels. So, you know, again, this idea of like emotional issues come up. But and very often they go into this eating disorders sort of. And again, they don't fit because body image is not the issue at all. So it's an inappropriate, you know, they are being provided with sort of inappropriate or ineffective interventions. And so it's all, very often with autistic women is that they realize they're on the spectrum when they're adults. It's very often very common and they tell us this all the time. But in terms of these sensory issues, again, they sort of eating challenges, extreme picky eating is very much a presentation in girls. The other thing about girls is that they tend to be in groups like, you know, as women, we like to be in our own groups. But they just, they, as opposed to boys, they just tend to be like outwardly they're just rejected sometimes. You know, the girls, they remain in groups, but they're almost like not participating in this group. So, you know, as clinicians, we have to be so much more like detectives when when we're talking about about girls and then in sensations, again, with the sensory input with girls, you would see like a fascination with like sparkles and, you know, like Beanie Babies, too, or like the touch, the touch of things. And like, you know whatever my little pony, and again, because those look like more kind of girly things, we don't tend to pay attention as much. But it is it could be very much a sensory fixation of some kind, like a repetitive behavior that has a sensory flavor to it. But again, girls and ASD is, it's a topic that can go on and on for a long time.
Dr. Heidi [00:37:29] Yeah. Actually Moira it's interesting that you highlight how kind of the trajectory of girls to getting diagnosed later and maybe entering kind of the mental health area first, because I see a lot of adolescents in therapy and a lot of girls who are coming, but they're coming because of things like social anxiety, and then it kind of unravels and we figure out actually they're they're on the spectrum. Right. And so it's interesting, too, because if they're presenting and they're thinking that they have socially anxiety, sometimes you tease apart and you realize, oh, there's actually sensory aspects. So I can think of one adolescent girl who really didn't like eating with other people. And it wasn't just about her own kind of like pickiness around food it was around hearing chewing going on and being so dysregulated by that, and so, like, yeah bothered that she couldn't be around it. Right. So she tried to preemptively keep herself out of those situations.
Moira [00:38:28] Absolutely. Yeah. And I see that quite often. You know, I had like a 10 year old who said to her, dad, you're allowed when you eat. He's like, I keep my mouth closed. So, yeah, definitely. It's it's very different. Autism in girls are very often misdiagnosed.
Maureen [00:38:47] What are some common misconceptions parents have with respect to the sensory behaviors that they might see?
Moira [00:38:54] I think most of us can understand that people have sensory issues because, you know, it's quite obvious that, you know, if you're if you're taking half an hour to get out the door because you don't have the right seam of the sock in the right spot for you to get out the door. But then, you know, it is good. But I think most people think it's it's a controlled behavior. They think it's the child's be manipulative. They don't understand that, actually sensory processing is unconscious for most of us. And so, of course, when we don't, if we're not able to understand that ourselves, then it's very hard for us to understand it in others, and I often say, you know, I remember, I have two kids, but I remember when I was pregnant. And not that I particularly enjoy being pregnant, but I was looking forward to actually getting that, you know, when people get like this the sense of smell becomes really strong, and then you feel like you're going to vomit, and I was really looking forward to those sensory differences because I wanted to know what does it feel like to put myself in those in kids' shoes? And I actually never got it. Which I'm probably the only person in the world that you know.
Maureen [00:40:04] That was upset by that.
Moira [00:40:05] Who's upset that I didn't get morning sickness or like any of that. The only thing I did get was like the baby end of my pregnancy, you know, when you start to waddle because because you're not able to see in front of you. And so your your vestibular sense on your proprioceptive sense is off. And then all of a sudden you're thinking, oh, I could fall because your body is not give, like your sensory systems are not picking up those sensations accurately. And, you know, other people would tell me, like, if you are in a lot of pain, all of a sudden, lights are painful. People who experience concussions, they talk about this sensory auras. They they they almost have these sensory experiences. So people in chronic pain will often tell me my goodness I cannot tolerate none of that, and that's what sensory processing issues are. And that's what we we do not understand as well as we should.
Maureen [00:41:05] Yeah. For sure. Because we've never had to experience all of that unless you're pregnant and you get morning sickness.
Moira [00:41:14] Exactly - unless you get morning sickness.
Dr. Heidi [00:41:17] When I was getting ready for today's recording. I was checking out different Web sites about sensory processing, and on one ASD information Web site, I read that any of the senses might be over or under sensitive or both at different times. And you've kind of touched on that. But that sounds so unpredictable. Right. It's not necessarily consistently under sensitive or oversensitive, and it can change in different situations. So with that unpredictability, what kind of effect can that have on the child who's actually experiencing that, those sensory issues firsthand? And then what's the effect on the family who's surrounding them and watching that unpredictability, having to live with it?
Moira [00:42:00] You know, it's so interesting. I think as human beings, we like to put people in boxes. It's this, it's sensory, and the responsivity; it's this, it's, you know, and, you know, most kids don't read those criteria and they don't fit nicely in the box that we want them to fit. And as human beings, none of us do. We're all complicated, complex people. And so, you know, when it comes to sensory processing and I think this is why it is difficult to understand and even for clinicians, you know, many clinicians shy away sometimes from practicing in this way because it is unpredictable. But that's the name of the game when it comes to sensory processing, when it comes to brain function in general, I mean, our brains are such amazing things that we only know a little bit about, you know, to this day. And so it's about being comfortable with being uncomfortable. So meaning, you know, I, because I've been doing this for so long, and that's the way that I practice, I can sort of catch patterns of like what the kid is doing and I can sort of tell you. But yeah, you know, very often and especially if you're stressed, your reactions are going to be way over the top or the opposite, you could be in shutdown mode. Right. And so, you know, life is stressful in many ways for everybody. So I and I think also with sensory based interventions, so the interventions that as clinicians, because some clinicians may be listening to this, you know, people get so discouraged because they say, oh, well, that didn't work, you know. Well well, it doesn't mean that it may not work tomorrow, it doesn't mean that it's not going to work next week. I mean, it is a process. We're looking for effective interventions, it's almost like a trial and error. It's what I call productive fails. Like, if the first thing didn't work, well, that gives me information as to what I might try next. But it's not a failure because, again, nervous systems change all the time. Sensory processing is part of your nervous system. So it is going to change. It's just a given. Your child is not going to fit the one box. And we have to be okay with that.
Dr. Heidi [00:44:13] It's a great way to look at it. Yeah. In some cases, young children with ASD might engage in self injurious behavior, such as head banging. And I know in my assessment experience, that's one aspect of ASD that tends to be particularly distressing for parents when they're seeing their child harming him or herself, and they're trying to keep the child safe. So how do you approach that topic with parents and help them to feel more empowered?
Moira [00:44:43] That's a great question and a tough one. I'll tell you what I think about self injury in general. So, yes, you will see kids who will head bang or bite their hands or really push really hard against against themselves, in an attempt to get some sensation that somehow they feel is regulating in some way. But it is very hard to watch, you know, when it comes to self injury, we always intervene. This is not something that we let happen because it because it is not going to be good for the kid or the person in the long run. So always intervene, number one. And can we then find adaptations, so maybe from biting your hand, can you then move on to biting something that feels, you know, something that's sort of like half kind of the same kind of feeling, but it maybe is like a toy thing or like, well, that's why we use "chewellery" for example. If it's headbanging, can we provide the child with deep pressure around the head, and, you know, when you're looking for patterns of behavior before they're actually seeking their headbanging. So whatever it is, we try to to actually provide the same input in a more helpful manner. So that's what I would say. The other thing I would say about self injuries and I think two things. So I told you about sensory modulation. There's another group that's called Sensory Base Motor Disorders. And what we know from this group is that sometimes, and people on the spectrum will tell us time and time again, I cannot control my body. I cannot initiate a movement or start a movement. I am stuck sometimes in this pattern. Right. So sometimes this hitting, you know, they they know I want my body to stop. But they're not able to. It's a motor issue of initiation, execution and termination of the of the, and so understanding that, so if you can imagine, if we look at motor behaviors like that, well, then all of a sudden I didn't mean to yell. I meant to whisper, but that's a motor, you know, that's a motor like execution of of your muscles in the, I didn't mean to push you, I meant to touch you, but my body just went too far. So if I really believe that we need to start looking at autism like the way sometimes that we look at Parkinson's, you're not fully able to control your body. Therefore, I am more compassionate as to what I see in the outside.
Dr. Heidi [00:47:35] Interesting. Moira, when I think of sensory seeking behaviors and sensory aversions, I can easily think of people that I know that show some features of that, and even with myself, I wish I could do away with wearing socks and wristwatches because I really don't like the feel of them. Can sensory behaviors also be seen in typically developing children?
Moira [00:47:56] Oh my goodness, we all have sensory processing preferences. That's what I got. You know, I, I certainly like certain things and not like certain things. And sometimes we can experience a bit of that issue. Like, for example, for me when I'm driving, like driving here, you know, getting on the highway, I always notice I can't listen to music and get on the highway at the same time because I, I need to block that like mute, because my body all of a sudden goes in a stress mode and I can only manage one thing which is merging. Right. So and it's like, oh my goodness I cannot process sensation when I'm merging. I just can't. So we all have our sensory processing preferences. The issue is when that difference gets in the way of your function. I mean, it affects you to such an extent that you're not able to do the things that you want to do, need to do, and or or have to do, or love to do. So that's when we intervene. So by saying that if a child is happily looking at like a lava lamp and enjoying that sensory input, because sometimes, you know, by the same token some people on the spectrum will tell us that the experience this wonderful, I don't even know to describe them, like they have almost like an out of body experience with sensory input. Do we need to intervene with that? No. You know, it's not affecting anybody. We're only intervening in what's causing distress. That's it.
Dr. Heidi [00:49:33] And that kind of touches on what we were gonna ask next about. So what determines if the sensory behaviors are more problematic or causing impairment? So that's a good way of looking at it. Does a child's sensory needs change as they develop? So our sensory processing challenges are the ones that you're seeing in children and as they get older into youth present differently with age?
Moira [00:49:56] So what I would say to that is that human beings, we get better at predicting what we don't like. So what we will do as we get older is we'll avoid things that we don't like. So all of a sudden, I don't like avocado I'm not gonna buy it, I'm not gonna eat it. No one's telling me to eat it, I'm not gonna eat it. I don't like going to a concert it's too loud - I'm not going. I you know, I don't like to be in crowds in the mall. No. So it gets better, because we get better at figuring out what it is that we are not able to manage. And so we as creative people as we all are, figure out other ways to do things. Yeah. And that's why we see fewer reactions as we get older.
Dr. Heidi [00:50:39] And that's why I'm not wearing socks today. So we we spent a lot of time talking about the difficulties that can arise. What does therapy or intervention look like for sensory seeking behaviors or aversions with children with ASD?
Moira [00:50:58] Oh, that's another one hour conversation. But I would say there's many things that we can do. Again, you see many lenses. But what occupational therapists excel at is that we recommend sensory based intervention. So it could be things like using massage strategically before difficult transitions, helping parents understand the textures of food and how we can what we call food chaining, so make it so that we increase a child's food repertoire in a way that feels safe to the child. So, again, sensory based interventions could be something like a weighted vest or it could be something like wearing compression clothing. It could be something like, again, coming up with like chewellery, something that you can direct the person to chew on something else instead of chewing on their own hand. A weighted backpack. It could be, there's all kinds of sensory based interventions and the list is long. And then there's some other kind of therapy that we don't do often in Canada. But it's called sensory integration therapy, so. And that's called actually ASI, Air Sensory Integration Therapy. It's got great validity behind it. Some nice research studies behind it. And this is very much an intervention that's done by trained occupational therapists, and it's a play based intervention where what we do is we provide the child with sensory experiences and we're looking for the just right challenge. So when that child is able to meet that sensory input and then we scaffold for them, for the child to then be able to manage it better. And so he looks so it's a it's a play based child-led therapy, but the therapist is trained in all the domains of sensory processing that they are able to help that child process sensation better.
Dr. Heidi [00:53:11] And why is that one not practice that much in Canada?
Moira [00:53:14] It's because he has to be done, like intensively. So it's like, it's done like three times a week and it's about like, you know, 45 days to 60 minutes, three times a week. And also, you need a lot of equipment, like we use a lot of swings and tunnels and we need specific equipment. So you need a space like a gym. So at Bloorview we do have a sensory gym. I don't know if you've seen it, but we use swings and that's what we're doing. But to do true ASI. It requires an intense short period of treatment that we are, in the private world that's being done, but not so much in in the centers as of yet.
Dr. Heidi [00:53:54] Yeah. So in the interim, we were highlighting how you've worked in various settings and with diverse populations. What do you consider to be the key ingredients in making therapy or intervention successful?
Moira [00:54:08] Oh, partnership with parents. Like what I the first thing I will do is parent coaching. And you know, I am not the expert. We are a team together and we are together working. So I very much taking the parents ideas because they are the experts on their own kids, and then we work together to come up with solutions.
Dr. Heidi [00:54:30] So when we were talking ahead of time and kind of preparing for this episode, you also mentioned something with respect to just building parent's confidence in therapy. What did you mean by that?
Moira [00:54:41] Yeah, so what I meant is that my role is also to empower parents for them to be able to provide, in my case, I'm doing sensory based interventions, not a ASI. So to provide sensory based interventions confidently and effectively and to, for them to feel that they are the drivers of their child's improvement, that for them to feel that they can support and their kids functioning and improve the quality of life, and, you know, to feel empowered as opposed to feeling like they have to bring the child to somebody else because they know better. So this is why us therapists, and this is all the therapists, we need to work in relationships with parents. And instead of us being the experts, we provide parent coaching. So we use that lens for us to work together as a team.
Dr. Heidi [00:55:42] This whole area of sensory processing, like sounds like it can be very tricky for parents to navigate and manage because ultimately the child's gonna be in different environments. Right. And they're not always necessarily going to have control over what happens in their settings. You're highlighting like the bell in school settings and so on. I also have parents who will describe how hard it is when their child's sensory behaviors show up in public and draw a lot of attention. What is there to help parents with this, or how do you kind of help parents with that?
Moira [00:56:16] Yeah. So remember, a vague thing of what we all need to do is looking at these environmental triggers. Right. So if you're gonna go to the grocery store, just being prepared. OK. First of all, do you know, you know, making that experience as short as possible and giving yourself more chances of success. So maybe having, so you have a list and your child is then doing the checkmarks, you know, and so, or maybe your child is in the cart, so you're, or maybe your child is actually pushing the cart, so they get that proprioceptive, helpful, deep pressure input in a way that's that's effective, because, you know, they are helping you push the cart. Another thing that parents tell me, you know, I take him to the grocery store and they're touching everything, and putting everything to their mouth. Well, you know, again, preempting that. So can you give your child, like, say something like a dried mango strip. And so they are actually chewing on something that's that requires continuous chewing the pressure through the jaw, again, that's helpful. Can you, so as you enter the store, can you already give your child that, and then, of course, if a child is then chewing their own thing, they're less likely to be touching other things. Again, the whole proactive part, so a lot of what we do is really planning, strategically, planning for things to be successful. And then very often they will be. No matter what your sensory issues are, if you have a plan. So another thing could be like having like a sensory tool kit with you so that you know, that you have your ear defenders, that you know you have something like with a certain kind of texture in the bag, maybe you have a cold drink. Maybe you have, you know, something they can drink through a straw. Because, again, that's that's regulating and helpful. And how many of us have coffee, not because we need the coffee, it's because we want the sensory input that we're seeking to regulate ourselves and wake us up. Right. So it's the same thing. So there's many things you can do. It just requires knowledge of what the sensory input might be in that environment. And then just being prepared and trying to preempt some of the behaviors before they happen.
Dr. Heidi [00:58:25] So prevention goes a long way. I can imagine, too, that just having that plan could also boost parent's confidence.
Moira [00:58:32] Oh, my goodness. Yeah. Social stories, right. We talk about just the idea of letting the child know where they're going, what's going to happen, you know, how long we're gonna be there. And this is what happens when we're leaving. So we do social studies for kids coming to our dental services, for example. And so they they actually get to prepare and they have a script that they go through. So, again, predictability for all of us will ease anxiety. So if we can add as much predictability as possible, this is why our kids want predictability so badly is because then they don't need to be anxious about it.
Dr. Heidi [00:59:07] Yeah, you you gave us a great example earlier of a 12 year old describing how some sensory issues felt or what their experience was like with chalk on a chalkboard in class. And a lot of what we know about sensory processing difficulties actually comes from older youth and adults with ASD detailing their experiences. So how have first hand accounts shaped your professional understanding and strategies?
Moira [00:59:35] Well, for me and I tell you it's so funny, I got onto social media two years ago now and really just Twitter and I do have an Instagram account. But in Twitter and I didn't know this there's actually lots of autistic self advocates who will tell you about their sensory experiences. They they will talk about it. They they they use their actual hashtag of actually autistic. And so everybody and I just learn so much from social media. I've learned so much. And, you know, I'll ask a question and people will answer. And so, very, sometimes when I just don't know what's going on, I say, what, what what do people think might be happening with this kid? Obviously not providing any detail that doesn't need to you know, but it's so interesting. So once I started to actually listen to what they were saying, then I realized even more so how important sensory processing is and how important it is that we know about it, that we know what to do, that we know how to support people on the spectrum because it is as you said up to 96 percent of people on the spectrum will experience significant sensory issues that impairs quality of life. And so to me, that was just eye opening, and I've been able to connect with autistic individuals just through social media alone. And, yeah, I've learned a lot from the people that we serve.
Maureen [01:01:04] That's terrific. We're actually recording this episode during the Covid 19 pandemic. And there's a lot of controversy right now about the mandatory wearing of masks. And this becomes a much bigger issue, I would imagine, for parents of young children with sensory issues. And so when a child has limited communication skills, we often hear a parent's stories of meltdowns, some of which include the self injurious behaviors that we might see. So what tips do have for parents who are struggling to get their children to wear these masks?
Moira [01:01:37] Yeah, actually, what I will give you a handout that you can add to the show notes. And I think it's it says everything in there, it's super helpful. But again, you know, when we think about what we've been talking about, this idea of, first of all, adding predictability. So, you know, presenting the mask. Having the child maybe do some like arts and crafts with the mask, you know, maybe decorate it in some way that they like. We talk about accommodation, so instead of having the strings go behind their ears, which is usually the issue, you know, can you make the string go around like a hat with like two buttons and that and the mask is actually being held up by the hat. In terms of what the expectations are around your mask wearing, can we do a social story, explaining you know, this is when you wear a mask. When you're home, we take the mask off and so on. So everything that we talked about, we can do it all with a mask. And yes, you may have some definitely some tactile over sensory over sensitivities to it. So, again, could we see if we provide some tactile input, some massage to the face before you put on the mask, are they then more able to wear it? So, yeah, it's endless what you can do. But I will I will give you that handout. And it's by another OT, actually, somebody I also met through social media. Her name is Heena Mahud, and she did a wonderful handout for kids who have sensory issues around mask wearing, and I think that will that will be a great resource for parents.
Maureen [01:03:11] That's terrific. So we'll make sure we put that on our website. I have one more question, and this is a question that we're asking all of our guests. And it's specific to creating what we're now calling our tool box, right, for parents that have children that are autistic. And we wanted to know even those sensory behaviors can vary a lot in terms of how they present, is there anything that you can suggest for parents who are currently waiting for an ASD assessment right now that they can do with respect to understanding and responding to their child's sensory needs?
Moira [01:03:50] I'll give you two. The first one is to really take, you know Carol Gray's words to heart, and Carol Gray is the person that actually invented the social stories. And she says, you know, there are no bizarre behaviors, there are just behaviors that are poorly understood. So first of all, when you see a behavior, just say, OK, there's a reason for this behavior, and if it's not being caused by pain, then there's something I can do about it. So knowing that there's actually something you can do about it, you just may not know what it is yet, but there is and you will get that knowledge. And then the other thing that I would say is that you are able to parent this child and that you with support and in partnership with the therapist on your team, you will be able to manage and help your child move forward and just not to despair.
Maureen [01:04:43] Those are great words of confidence for a parent, right, who probably feels very much out of control a lot of the time.
Moira [01:04:51] Yeah. Yeah.
Dr. Heidi [01:04:53] So I'd like to thank you so much, Moira, for joining us today to talk about sensory processing issues. I feel like you provided us with a wealth of information and even us as clinicians doing the interview have learned so much. You've got a lot of resources and links available that we can share on our Web site as well for our listeners. So thanks so much for joining us.
Moira [01:05:16] Thank you. It's been great.
[01:05:20] If you've listened to this episode and have comments or ideas that you'd like to share with us regarding future episodes or what you heard today, feel free to e-mail us at ASDEngage@hollandbloorview.ca.
Down Syndrome Research Foundation
Dr. Heidi [00:00:09] Welcome to ASD Engage, a podcast for families of children who are currently waiting for an autism spectrum disorder or ASD assessment. I'm Dr. Heidi Kiefer, a clinical child and adolescent psychologist.
Maureen [00:00:22] I'm Maureen Mosleh a psychometrist.
Shawn [00:00:25] And I'm Shawn Brumby, also a psychometrist. We work on teams that assess children for ASD at Holland Bloorview Kids Rehabilitation hospital. Each episode, we will present a topic that reflects concerns brought forward by families we work with.
Maureen [00:00:41] You'll hear information regarding the assessment processes and insights and information from a variety of specialists. And more importantly, we'll talk directly to families who share some of their personal stories with us in an effort to help guide you through the assessment process.
Dr. Heidi [00:00:59] In a couple of previous episodes, we spoke to a parent, Adrienne, about what the experience was like to have her daughter assessed and diagnosed with ASD. One of the unique aspects of Adrienne's story was that her daughter was diagnosed seven years ago. Adrienne shared how much has changed in terms of her daughter's development and also reflected on the changes with respect to her own perspectives about ASD. In this episode, we shift her focus to Kelly and John, a couple who are parents of a son, Liam, who received a diagnosis of ASD less than six months ago. On top of that, they went through this process in the middle of the Covid-19 pandemic. Liam is quite young, two years of age. And we're speaking with parents at a time when the ASD diagnosis is still quite new, and their story with Liam is still very much being written. So first of all, hello, Kelly and John, it's a pleasure to have you here for this episode.
John and Kelly [00:01:58] Hi there.
Kelly [00:01:59] Thanks for having us.
Dr. Heidi [00:02:00] So to start off with, could you tell us a bit about your family and what the circumstances were like when you started the assessment process with Liam?
Kelly [00:02:10] Sure. So currently we're living with, actually, we were living with John's parents, and we've been staying with my parents for the last two weeks. But we're going back to John's parents place. In the household, there's myself, John, Liam, and John's parents and John's sister. So there's a joint family, a lot of people in the house. We've been living there for the past year because we're going through some renovations also with our own house. We, he started day care in September.
John [00:02:50] In 2019.
Kelly [00:02:53] Yeah, in 2019 sorry. And after about a month of being in daycare, his daycare teachers approached me and said he was a little behind in certain areas. And I, I kind of immediately knew something was off by the way, by what she was describing. So I made an appointment with his pediatrician the next day and I went to see the pediatrician and he made me fill out something called the the MChat, after I told him he was behind in speech and then some, I think some motor skills as well.
John [00:03:32] Yeah, fine motor skills.
Kelly [00:03:33] Yeah. So he made me fill out this form called an MChat. I went home and Googled it and found out it related to autism. So I kind of knew right away that, you know, that's a possibility. So I told John about it and his family and no one really took me seriously. So, John kind of..
John [00:04:01] Yeah, I, I, so I think when we were talking to people about it, it just seemed like, OK people said, oh, you know, boys tend to develop slower they're later to pick up on speech. And I think I had just kind of reinforced those opinions in my head. And so.
Dr. Heidi [00:04:19] We hear that alot actually with clients coming in.
John [00:04:22] And but because Kelly was concerned, I thought, OK, I do have a friend who works for an autism center in Scarborough, SAAC. And so he actually I reached out to him and he put me in touch with a pediatrician there. And so we scheduled an assessment.
Kelly [00:04:43] Like a screening. Yeah.
John [00:04:46] And so we met the doctor there. And I really went into this thinking that it was just a formality. And I forget what the name of the screening, the specific screening that he did was, but I think it was on a scale of like 30.
Kelly [00:05:02] 30 being high.
John [00:05:03] And the way he explained it to us was, you know, if you score a 12, then it's probably worth it to do a more in-depth assessment. If it's if it was like 16, then you definitely want to do one. And so he was giving Liam these sort of little tests like little little games to do. He'd give him light up toy, and Liam would kind of get fixated on it and put in his mouth.
Kelly [00:05:28] Or bring it up to his eyes.
John [00:05:29] Or bring it up really close to his face. Another thing that he did was kind of holding up two pictures, one of the baby and one of these railway tracks and see where he gravitated towards. And he actually picked both of them, so that kind of was a little less conclusive. But there were a series of things that he did. And at the end of it, he told us, you know, not to freak you out or anything, but he scored a nineteen. And it was at that moment, I think that it hit me that, OK, this is not what I thought it was. This is definitely more serious.
Kelly [00:06:05] But he did mention like some of, he did mention, like he had a lot of, Liam has a lot of positive traits that are inconsistent with ASD which made the whole thing very confusing. Like he had pretty good eye contact, or has. He's pretty social, like he wants to be engaged with us. So it was very.
John [00:06:29] Laughing and playing you know. Yeah, you know.
Kelly [00:06:30] Yeah. It was kind of confusing. So he said, yes, you know, you should get him tested. But, you know, he also has these traits that are inconsistent, so that kind of made the whole thing kind of confusing.
John [00:06:42] I think the one thing that did seem kind of odd to us from the, like before the assessment was so this was at this point, Liam was 19 months?
Kelly [00:06:54] Yeah 19 or 20 months.
John [00:06:55] Yeah. And he wasn't responding to his name. He never responded to his name when we would call him, and so.
Dr. Heidi [00:07:03] That whole time.
John [00:07:04] That whole time. Yeah.
Kelly [00:07:05] So, we both we didn't even think of it, because he has a lot of pet names at home like nicknames from my parents and John's parents. So we were just like Ok he's got too many nicknames, so everybody's got to start calling him by his name. So we didn't think anything of ASD, we just thought that might be the reason.
Dr. Heidi [00:07:29] Like there's too many names and he's just getting confused by them?
Kelly [00:07:32] Yeah. Yeah. So, yeah.
John [00:07:35] So I think we just kind of, used that as an excuse to justify why he wasn't responding to his actual name. Yeah, but it became more clear at that point.
Dr. Heidi [00:07:49] Kelly you you went into action right away once the daycare brought up concerns.
Kelly [00:07:53] I did. Yeah.
Dr. Heidi [00:07:53] So how long had he been in daycare before they they brought those issues to your attention?
Kelly [00:07:59] Just a month. Our daycare was really on top of everything.
Dr. Heidi [00:08:02] Yeah.
Kelly [00:08:03] They they do like an assessment every few months. And I guess his assessment was due. He Iike I think they most people start at 18 months the band is 18 months to two and a half year olds for the class he was in so he was due for an assessment, I guess, and he fell quite behind. He was at like the 15 month level, according to them and he was he was 19 months. So he's pretty far behind. And I think they said stuff like speech was behind, fine motor skills were behind. He wasn't like able to feed himself fully, stuff like that. So he was behind in a number of areas. And that's why they they just mentioned it, they didn't actually say anything like, oh, he may have ASD or anything, they just said he was behind. And then I, that's what just made me get worried and make an appointment with the pediatrician.
Dr. Heidi [00:09:09] Yeah. So early on, it sounds like the two of you were on different pages in terms of considering the possibility of ASD. What was going on with that and what was that like for both of you to be on different pages?
Kelly [00:09:25] I think, I think for me, I kind of knew right away that something was wrong, maybe because I was the one that heard the news from the daycare teacher. Like, John wasn't there when I got that news. So, I don't know, it kind of seemed very real to me when the daycare teacher told me that information and I was kind of just relaying it to John. So I don't know, maybe cos you didn't hear it firsthand, but also because, like, our parents and a lot of people were just like, oh, he's probably just behind, you know, he's he'll catch up, every child is different. Like, we had a lot of that.
John [00:10:13] We're first time parents. So, you know, I think I was very accepting of other people's opinions on what could be going wrong. And I would say, you know, if I can say so, I think I think like in our relationship Kelly does tend to worry more, and I'm usually maybe sometimes overly optimistic about how things are going.
Kelly [00:10:34] Yeah, our personalities are different that way. I'm definately the worry wart.
John [00:10:37] But, you know, in this case, she was she was spot on. And so that was just something that I had to come to terms with the hard way I guess.
Dr. Heidi [00:10:47] Yeah. So a few different factors that kind of going into that.
Kelly [00:10:52] Yeah, I think so.
Dr. Heidi [00:10:53] Yeah. Yeah. But I could see how like listening to other people kind of like taking that advice that you don't need to sound the alarm quite that quickly, right, he might just be behind and everybody's on their own path.
Kelly [00:11:07] Yeah. We definitely got a lot of that. And I don't know, I feel like I, I don't know, I do a lot of Googling, so I think.
John [00:11:17] There's that, too.
Kelly [00:11:19] Yeah. Like, I read a lot and stuff, so even just looking at the questions on the MChat that I had to fill out, like I think I Googled it when I got home too, like questions MChat, and Liam had like had a lot of them, like a lot of the signs, so that also made me kind of, you know, more sure about that there was something going on there. So I'm not sure if you, you probably didn't do that.
John [00:11:49] No. I'm hesitant to just kind of Google these sorts of things because, you know, you can kind of find anything, like any opinion that you're looking for I felt like so I just wanted to wait until we heard from a professional. But in my mind, I really did think that it was nothing. And so but but once, you know, the doctor kind of put things into perspective, then then I realized immediately that I had to change what I was thinking.
Kelly [00:12:19] John probably got on board after that initial screening. Like, that's when it hit him. that this is real.
John [00:12:29] Yeah.
Kelly [00:12:29] And our parents didn't come on board until way later. I think my mom still doesn't fully believe it.
Dr. Heidi [00:12:38] So we've got some questions about that a little later on. So, John, you'd mentioned you got connected to SAAAC.
John [00:12:48] Yes,.
Dr. Heidi [00:12:48] Which we believe is the South Asian Autism Awareness Center. And so you had a friend who was working there?
John [00:12:57] Yeah, a childhood friend, he he works there. Yeah.
Dr. Heidi [00:13:00] And what was your experience like there?
John [00:13:03] It was great. It was great. Yeah. You know, I've known about SAAAC for for a while since my friend had started working there. And, you know, I've been to at least one of their galas that they do, they do a yearly thing. And so, you know, I had some knowledge of what they do. But, you know, I'm so glad that they were there to help us through this process because, you know, the doctor that we met there, Dr. Schiff, met with us obviously for the first screening, but then also later on, you know, once once the pandemic started we had a Zoom chat with him and another gentleman who kind of helped us through, you know, just we explained where we were at with the whole process and they kind of helped us with the next steps. So yeah we are definitely very appreciative of that.
Dr. Heidi [00:13:56] Yeah, well, yeah, and even just listening to you talk about the process, like it seems like you have a good understanding of why they were doing what they were doing, and what the scores ment and stuff like that.
John [00:14:07] Yeah. Yeah. For sure.
Dr. Heidi [00:14:09] So then you went from SAAAC and then you were on the wait list for a developmental assessment here at Holland Bloorview, and then the most unexpected thing happened, a global pandemic. So the hospital paused assessment services for a period of time and then started offering virtual assessments done over Zoom, which was in lieu with those in-person assessments, which we couldn't do because of the lockdown. So what were your thoughts initially about doing the virtual assessment?
Kelly [00:14:42] I initially wanted to do it in person. I don't know, I just felt like seeing, like being with someone face to face, it's, I don't know, maybe you get a more conclusive result or something like. That's just something I had in my mind. But we, obviously that wasn't possible because of the pandemic, so or otherwise it would be delayed significantly, the assessment. So we went ahead with the virtual assessment, and it was actually, it was pretty good. Like we, one benefit of it was that we were in our own home. So it was a very natural setting for Liam, and John was the one kind of following myself and Liam around with the camera, and he he tends to run around a lot, so he you know, he would just follow us and show the doctors how he played. So it was a very natural setting. So that was pretty good. And it didn't, like Liam was pretty calm, like and happy in his, in the home setting. So that was definitely a benefit.
John [00:16:00] Yeah. And even happy and friendly with the doctors on on the screen, you know, saying hello and smiling and you know. Yeah. He was in a good mood. So I think that was helpful. Yeah, definitely.
Dr. Heidi [00:16:10] Yeah. And you were the cameraman.
John [00:16:12] I was a cameraman. Yeah. I would say, like over that period of time between when we had the assessment at Holland Bloorview, from starting from when when we first got screening, Kelly's become very good at modeling play, and that that's a comment that we've received more than once. So I think it just made more sense for me to get behind he camera to make sure we get the best assessment possible.
Dr. Heidi [00:16:38] Everybody using their own strength.
John [00:16:40] That's right. That's right.
Dr. Heidi [00:16:42] Yeah. I can understand your hesitation though, Kelly, because up until that point, you had had pretty much all your in person sessions, so it would have felt quite a bit different to think about it being virtual for the main assessment.
Kelly [00:16:57] For sure. I should mention like we, the appointment at SAAAC was in person and we also, we might get into this later, but we did do early intervention so, and all of those sessions were in person, so that's why I was just comfortable with having in-person sessions.
Dr. Heidi [00:17:18] Yeah. Yeah, absolutely. So we talked about how you've been living with your family throughout the process. So it sounds like right now you're living with maternal grandparents for a couple weeks, but are headed back to paternal grandparents. Was the assessment and the possibility of ASD something that you openly talked about with other family members?
John [00:17:43] With with parents and siblings, yes.
Kelly [00:17:47] With immediate family members, yes. We openly talked to them about it because we're in constant contact with them. With extended family members, we haven't talked about the diagnosis at all.
John [00:18:02] I think we debated whether or not to do it. And I don't know if there will come a time later where it makes sense. But what did happen, you know, prior to us getting the formal assessment done was I ended up speaking to a relative or acquaintance that whose son also is on the spectrum, is a bit older. And so, you know, I had long conversations with him just to understand his experience. And they had chosen, aside from some immediate family, not to really share that information with with other people. And I think there were various reasons for that. But it seems to have worked out well for them. I think probably one of the concerns that that we certainly have is people treating Liam differently. You know, we don't want him to be labeled, especially since, you know, he he is very high functioning. Like, if someone didn't tell you that he was on spectrum, you probably wouldn't know. And so we didn't want that to present any sort of, you know, strange dynamic for for, you know, family gatherings or or, you know, get togethers with friends and all of that.
Kelly [00:19:22] Yeah. So I think we've been very selective with who we've shared the information with because we did share it with immediate family, not extended family. But we have shared it with some like I've shared it with some close friends and we've shared it with colleagues.
John [00:19:39] I've shared it with with colleagues just because I'm dealing with them every day. And so they know when I'm going out for appointments and all that. I haven't even told most of my friends, really, just for the same reasons that I am not telling my extended family right now. And I have a big family. So that's why it was you know, we really had to figure out what the.
Dr. Heidi [00:19:58] Yeah. So you've been quite selective. Yeah. And when you said siblings before, John, you meants yours and Kelly's siblings right?
John [00:20:03] That's right. Yeah.
Dr. Heidi [00:20:04] Yeah. What was the reaction of the family members that you did tell when Liam did get the ASD diagnosis?
John [00:20:13] So I would say on the initial screening, there was definitely still skepticism because it was still just a screening. They thought they were still, I think, pretty certain that it's not what we're fearing it is. Once we got the formal diagnosis, I think my parents were a little more onboard. You know, I think they still don't necessarily know what to do with it, but they've somewhat accepted.
Kelly [00:20:43] And I think with my parents, I think my dad was always kind of on board. He was pretty, he actually told me, he was the one that noticed that Liam was not responding to his name.
John [00:20:56] And that's right.
Kelly [00:20:57] A long time ago. He mentioned that he was the one that mentioned it to us that, like, I don't know, 12 months. And that's when we were like, oh, he's got too many nicknames. So I think my dad's always kind of suspected something. My mom is the complete opposite. She, you know, just like yesterday, just kind of like oh well all kids are like this, or whatever, like making some excuses. so, yeah.
John [00:21:23] And she's worked at daycares and stuff too. So, so I think she's saying, you know, there are lots of kids like this, you know, there's nothing to worry about. But, you know, a lot of those kids could also be on spectrum and you don't know. So, yeah, I think a lot of it just has to do with awareness.
Dr. Heidi [00:21:43] John you mean you like you think your parents are board right but you're not too sure, like that they know what to do with that. What do you mean by that?
John [00:21:51] I mean, I think. I think my my mom is really hopeful that it will somehow kind of go away. You know. You know what.
Kelly [00:22:02] Yeah, she still calls everything like she's still asking us when does treatment start and stuff like that, and I try to tell her that it can't really be treated. It can be you know, you can manage it with therapies, but it's not going to go away.
Dr. Heidi [00:22:19] So she's almost invisioning treatment as like when once treatment is over then all of this will be cured.
Kelly [00:22:25] Seems like it.
John [00:22:26] I mean, she hasn't said that, but I think that I think she's hoping that that's what the final outcome will be which you know, fair enough, you know, we all hope that we can you know. And we've heard different things that it's possible that with intensive therapy right now, given that Liam is very young, that maybe he can come off spectrum, which, you know, which which would be good, I think, for us we're hoping an achievable goal will be to get him to a point where he's independent, you know, and just able to to function in society, and, you know, what might be considered typical or normal.
Dr. Heidi [00:23:08] Yeah. Yeah. So everybody's kind of on a bit of a different page?
Kelly [00:23:13] Yeah I think so.
John [00:23:15] Yeah. I think they're slowly coalescing, but it's it's a journey.
Kelly [00:23:21] And we're just trying to educate as, educate everybody as we see them, like just, I'm trying to point out to like my parents, like this thing that he's doing right now is not typical. He's because he's fixated on something. I'm just trying to show them what's the difference between atypical and typical. So it's gonna be a process, and, yeah, they'll eventually come to terms with it.
Dr. Heidi [00:23:48] At this stage in terms of, like, your understanding and your acceptance of the ASD diagnosis, do you find that there's still times when your family members are kind of influencing the way you think about the things you're seeing with his development, and then also, like it does provide a bit of a filter or a lens in terms of the professional advice and support you've been getting?
John [00:24:10] I guess for me, it depends on on what advice they're giving. If it's something that would somehow relate in the opposite direction of what we already understand of his ASD diagnosis, then I would just completely ignore it, you know. If it's something to do with potty training, you know, unrelated to ASD, maybe then I don't know.
Kelly [00:24:31] Yeah, like we might take some general parenting tips from them. But, um,.
John [00:24:36] Yeah, if it's anything to try to change our minds about where Liam is at. Then no. I would just disregard it.
Dr. Heidi [00:24:42] Yeah. Yeah. So that's been a big shift then from thinking about what you were describing before. Whereas like first time parents, like you mentioned, John, you were you were really taking into consideration a lot of these different viewpoints.
John [00:24:54] That's right. I mean, I fully accept where, you know, where Liam is at. And so it's for everyone else, it's pretty much get on board or get out.
Kelly [00:25:04] Yeah. And I think we've had a lot of education in the last, you know, since September really like of ASD. And I think we know more than our parents do in terms of ASD because we are the ones that are going to therapy and interacting with all these different professionals. So in that respect, I trust the professional's opinion more.
Dr. Heidi [00:25:30] Yeah, yeah. Could you also tell us a little bit about your culture's perspective on ASD and if you think that might also play a role in how your family views what they notice about Liam and the reason that they're using for the behaviors that they see?
John [00:25:48] That's an interesting question. So we'll just give a little more context on our background. So we're both, like both of our parents come from India. Kelly's parents are from the north, they're Punjabi. My parents are from the south. And so, you know, in India, at least from what I've seen, they don't really talk a lot about, you know, about autism in general. I've spent some time. I went to high school in India. So, you know, I feel like I would have heard something about it. And even here, I feel like it's getting a lot more attention now than it was, say, 20 years ago. Yeah. So from a cultural perspective, it hasn't really been part of the conversation. Anything they're hearing about it is in a Canadian context. But they've also been here long enough that I don't think they're necessarily thinking about it too much from the Indian perspective. I don't know, Kelly, if if you have any thoughts on that.
Kelly [00:26:52] I mean, all I think all I can add is I don't know if this is a cultural thing, but. I just know that my parents, as well as John's parents, they don't talk about these things and they they've explicitly told us, you know, let's not tell the family.
John [00:27:13] That's true.
Kelly [00:27:14] Let's not tell, don't tell people this, anything about this. So, and that might be a cultural thing where it's not talked about. Any sort of illness or any sort of condition, like it's just not it's dusted under the rug almost.
John [00:27:30] I like to think that wasn't a factor in us deciding not to share it with extended family, but, you know, certainly they did express that opinion as well.
Dr. Heidi [00:27:41] Do you have any sense of what the what the reasoning or the motives are behind that kind of like this is something we don't talk about?
John [00:27:49] They haven't really given a proper explanation for why not to. I don't know if it's a sense of shame.
Kelly [00:27:54] Possibly, or judgment.
John [00:27:57] Part of it is also, I think, the same reasons that we were concerned with, they don't want Liam to be treated differently by family members because of this diagnosis. Or people to just kind of I think they're worried about people gossiping and saying things and how that might evolve. I think that's part of it. And also, you know, that's part of the reason like SAAAC exists. I do know that because within the community people are ashamed to talk about it. And so while autism has become a lot more prevalent of a topic in recent years, yeah, you're right, in our, like in a cultural context, I think South Asian folks, any sort of mental illness, really, it's not just autism, depression, anxiety, whatever it is, people don't want to talk about it. Right. Because it brings a sense of shame. And so, you know, the existence of SAAAC is really, I think to make sure that people in our community understand that it's OK to talk about these things, to acknowledge that, you know, our children might not be, you know, what might be considered to be typical and that it's OK to have these conversations. And, in fact, that's the only way to move forward. You know, sweeping it under the rug is only going to serve to create, you know, bigger issues down the line.
Kelly [00:29:29] And I think that organization, SAAAC, the organization also helps those parents connect, because otherwise you wouldn't know, you know, anybody else who is experiencing the same thing.
John [00:29:43] Within the community.
Kelly [00:29:44] Within this community. So it does give people an opportunity to connect with other other parents.
Dr. Heidi [00:29:50] Yeah, well, those are all great points. And it sounds like they did provide a huge level of support.
John [00:29:56] Yeah, definitely.
Dr. Heidi [00:29:58] So, Kelly, you you highlighted how you and John have really done a lot education wise, and learning about ASD, and so now you feel like you're on the track to becoming experts about ASD
John [00:30:15] I don't know.
Dr. Heidi [00:30:17] What's it like to be the information sharers to the rest of your family to help educate and inform them about ASD in order for them to better understand Liam?
Kelly [00:30:28] I think I definitely feel more confident. In the beginning I was just kind of scared, didn't know what I was doing, but by getting all this education and then passing it on to my family and John's family, I feel more confident in my abilities and John's abilities. And I don't know, I just feel like little tips that we're getting from all the various therapists, I'm able to comfortably tell everybody, okay, this is what you do in this situation, this is what you do in that situation, and I feel like they kind of respect us more, too,.
John [00:31:10] As parents
Dr. Heidi [00:31:11] So like your family.
John [00:31:14] I think so.
Kelly [00:31:14] I think so. They do ask, you know, oh what did the therapist say today? Like, they're eager to learn as well. So it's I don't know, it's improving the relationship in some ways.
John [00:31:28] Yeah. And straining it in others.
Dr. Heidi [00:31:28] Straining it in others though?
John [00:31:28] I mean, no, I would say, like I said in the beginning, it was kind of everyone is on a different page and now we're kind of slowly coalescing. And so yeah, I think as time goes on, they were all kind of starting to see things in the same way and understanding what the path forward should be for the most part. But there is still, I think from time to time, there will be pain points.
Kelly [00:31:58] Yeah. For sure.
Dr. Heidi [00:31:58] But you're kind of alluding to the idea that you're moving towards consistency among people, that everybody is gonna be able to use the same strategies and stuff like that so as instead of it just being the two of you kind of, you know, using strategies with Liam you're getting more to be a family unit, right?
Kelly [00:32:21] Yeah, yeah. We're hoping like it is moving towards that that way. I mean, things I don't know how things are going to be in the future, cos we are living with them currently with our parents. So, you know, there's that constant exposure to each other. When we move, hopefully we'll be able to maintain that consistency. So, yeah, everybody I think is slowly, you know, applying the same rules. Like, for example. We don't, we actually put Liam on a gluten free, dairy free diet because we got some advice from a Naturapath that we saw. And they're, you know, respecting our families are respecting those decisions, and they make sure not to give him any gluten or or dairy. So little things like that, like you know, they're following our wishes. So, yeah. So there that is providing some level of consistency.
Dr. Heidi [00:33:25] That's great. So Kelly, you also mentioned that you've been involved in various therapy services. So post diagnosis, what has happened for you guys and Liam since what follow up services have you engaged with after getting the diagnosis?
Kelly [00:33:42] So post diagnosis it's been actually been more challenging. I should mention so we did early intervention right away before even getting diagnosis,.
Dr. Heidi [00:33:54] What do you mean by early intervention?
Kelly [00:33:55] So we, when we found, after the screening at SAAAC, we were up, we were pretty sure he had ASD, so we actually started speech therapy right away. And I think we started it in in November, and we probably went to SAAAC in October. So we went through a few different speech therapists until we were comfortable with one. So we did speech and then we we transferred eventually over to an organization called ISAND. And we liked that one, especially because our therapist, not a, she is a speech therapist, but she also has a behavioral background, so that's why we really liked ISAND. So we were doing that. We, and then the.
John [00:34:50] And the Naturapath as well.
Kelly [00:34:51] And the Naturapath we saw, that we saw in November, made some adjustments to Liam's diet and gave him some supplements. And then we, then the pandemic hit and we had to stop ISAND unfortunately. But then this, we were on a list for the city of Toronto Early Abilities. So we started speech online sessions with them. And that was I think that was before the diagnosis.
Dr. Heidi [00:35:24] And that was all before the diagnosis? Oh my gosh, wow.
Kelly [00:35:28] Yeah. And then we got the diagnosis. And then I think we were actually still doing the the speech with city of Toronto when we got the diagnosis, and then that stopped because they come and blocks those early ability sessions. So our block ended. And then since then, we haven't actually had anything. So that was kind of a challenge, like all of the therapy stopping all of a sudden. So we're we're eager for it to start up again cause, I mean, the online sessions are are good. But I do really want to go back to the in-person sessions. We're also on a wait list to get into from ISAND, the Early Denver Model program that they have. So that's not, I guess is not quite ABA., but it's like, I don't know ABA for youngsters, because it's just like a it's a better behavioral setting. Therapy for children that are young.
John [00:36:32] It's more intensive. Yeah.
Kelly [00:36:34] So and then now, actually, we're gonna be doing the social ABC's program over here. So that's going to be good that you know, it's nice that therapies are starting up again, so. Yeah. So we've actually done quite a bit pre getting the diagnosis and now that it's slowed down after the diagnosis, but now it's picking up again.
Dr. Heidi [00:36:57] Yeah, yeah. Cause you actually got the diagnosis in April 2020. So everything at that point was pretty much locked down.
Kelly [00:37:05] Pretty much. Yeah, which was challenging.
Dr. Heidi [00:37:09] So you had mentioned before Kelly, so when you're talking about trying to find a speech and language therapist prior to the diagnosis, you went through a few. What were you looking for. What was guiding your process to find the perfect SLP?
Kelly [00:37:25] Honestly, the first speech therapist, they've all been great, but, you know, you gotta find the right fit. The first one I actually just Googled, so just saw someone that had like highly rated stars and I just picked them or picked that organization. And I don't know, was just didn't really see...
John [00:37:46] It was fine. I think the first couple of sessions were were useful,.
Kelly [00:37:52] But we just didn't see it, I guess we just didn't see very, the sessions were the same every single time. So we wanted to see variation I guess in in the therapy. So we then, actually the second therapist was the one at ISAND and we did see that. There was more of a structure, I found like, you know, a few sessions we would kind of do similar types of therapy and then it would be switched to a different type of therapy, even like bringing out different types of toys every day. Whereas the first speech therapist it was the same toys every day. So you're not really expanding the language that way. So, and then actually we were happy with the therapist ISAND but everything shut down so we couldn't continue. So that's why we had the city of Toronto therapist who was also great. But I think I will want to return to the therapist at ISAND.
Dr. Heidi [00:38:54] Yeah. Well, I just like the fact, though, that you you kind of had a sense of the fit was important. You also like seemed atuned to like the particular model that one of them was using and you were kind of trusting your gut.
Kelly [00:39:08] Well, I think so. I think when you, because, like, we're present in all of the therapies and we can see exactly what's happening. And I just felt we weren't progressing or moving forward with the first therapist, whereas with the second one, I could see there was actually there was a goal plan that we would make after every session. So it was just a I found it to be more structured, which is something I like. So I don't know, maybe it was just maybe it was her and I fit better together.
Dr. Heidi [00:39:42] And that's a good point that can factor into it as well. But I guess you have to listen to your gut as much as, like, stars on the website.
Kelly [00:39:50] Sure, sure. You get to experience it and then kind of reevaluate every few sessions.
Dr. Heidi [00:39:59] You've been really creative in finding resources for Liam and your family, Kelly. What's been your approach to this?
Kelly [00:40:08] Mm hmm. I think, so I should you know, I should mention, I actually have, I was lucky that one of my colleagues had kind of gone through this process, like sixteen years ago, I think. So she kind of was my go to in the beginning because I was just, I didn't know what to do. When you're in the beginning, you don't, it's so, there's so much information. There's just, it's info overload. So she basically kind of not only was there as like just a support, but she had a lot of material and guidance to give me, like, a lot of books which I actually haven't gotten through because there's so many just like a lot of, she gave me a lot of resources, like I went to this speech therapist when my son was going through this. You know, she told me about, she, I think she's the one that told me about the city of Toronto Early Abiliites. That's how we registered for that. And she kind of really provided a lot of support. So I was very lucky to have that individual in my life. And then we also have after you, I think we've had people tell us about resources, too. So John's family friend had given us a lot of resources as well, and.
John [00:41:40] And then my childhood friend at SAAAC was also helpful.
Kelly [00:41:44] Yeah. So we've had a lot of people in our lives, fortunately, that have given us you know direction. And then also, after getting the diagnosis, we had a list of resources there too to read, to access. So yeah, there were, we did have a lot of individuals and professionals giving us advice that kind of helped with the process.
Dr. Heidi [00:42:09] So it it's interesting because you've been involved with a lot of different organizations, but there's no centralized source of information. You're getting it from all kinds of different people. Right. And then it's up to you to sort of like put together your resource kind of center for yourself.
Kelly [00:42:28] Yeah. And it's still kind of confusing and messy, like so a lot of these services we had to do privately because where we haven't, we're waiting for funding. So we have like receipts all over the place. And like, it's it's I think it's been a challenge just getting organized. And that was something my friend, my colleague told me, like, you know, get a binder, you know, organize yourself because there's just a lot of information and receipts and stuff that you need to just kind of get in order. So I, I need to get on that because it is it's really it's been difficult to kind of manage all of that. So yeah.
Dr. Heidi [00:43:16] And when you see funding, you're talking about the Ontario Autism program funding?
Kelly [00:43:20] Yes. Yes.
Dr. Heidi [00:43:21] So when did you guys apply for that?
Kelly [00:43:23] Soon after we got the diagnosis.
Dr. Heidi [00:43:26] And and what's the status of that ?
John [00:43:30] I don't think we recieved any update.
Kelly [00:43:31] We're not sure. I think we got a letter that we may be getting more information soon, but it was yeah we haven't really heard too much. Not yet.
John [00:43:44] And we're really fortunate, you know, I should say that we have the resources to be able to do early intervention and the speech therapy before we even had a diagnosis. I think when we thought about it, we thought even if the diagnosis comes back negative, that therapy is still helpful for Liam. Just in terms of getting moving forward with speech. But, you know, we recognize that most families would not have the same level of resources and, you know, so we're just very lucky.
Kelly [00:44:15] But there are, there there are certain, I guess there are services that that are free that we also accessed like the city of Toronto speech therapy is free.
Dr. Heidi [00:44:25] Early Abilities.
Kelly [00:44:28] Early Abilities, so there are things out there that.
John [00:44:30] But yeah, but like the stuff that's available to everyone is is also limited. Right. So early abilities is great, but you're only getting, you know, a handful of sessions in blocks a couple of times a year. And really, you know, to have a meaningful impact, you need to be practicing this stuff 24/7. Right. Which is difficult, I think.
Dr. Heidi [00:44:52] Yeah. Well, and, John, you kind of read my mind in terms of the next question, too, because you highlighted being fortunate about having financial resources. And I was going to ask, how big a factor is the financial resources in your in just enhancing your ability to navigate the system and boost your confidence level in what you're doing as parents?
John [00:45:18] In terms of like that being a factor in deciding what to do? Like I said, I guess we were fortunate enough that we were able to pay for a lot of these things out of pocket. It hasn't gotten to a point where it's been a limiting factor. And I think that's one area where parents have also been very much on board. Just being like, don't worry about money for this. My my mom has emphasized that a lot. But just just do whatever you have to do, even if you have to sell your house. Just just do it to take care of Liam right now.
Dr. Heidi [00:45:54] Yeah. What also strikes me, too, just like, you know, the resources can kind of offer you that immediacy in terms of like, OK, well, we've done the research, this service looks like it's going to benefit him. Let's get it right, as opposed to having to wait for some of those services that are available, like you said to everyone.
Kelly [00:46:14] Yeah, that's true. Yeah, that's a good point, because Early Abilities, we were on a wait list for a few months before we actually got access to it. So and in the meantime, we were doing it privately, but other parents may not have that. So they'd just be waiting. Unfortunately.
Dr. Heidi [00:46:32] Throughout this time, John, you mentioned you've had a friend who disclosed to you that his child is also on the spectrum. How did that come about? How did you start talking about that? And do you consider him to be a source of support?
John [00:46:46] Yeah, definitely. So this wasn't someone in my immediate circle. It's more like a relative of a relative who I just kind of knew. But, and I didn't even know that that his kid was on the spectrum.
Kelly [00:47:05] I don't remember how we found out, was it your mom?
John [00:47:08] My mom somehow knew. You know, because moms talk, I guess, so I reached out to my cousin who who's related to these guys. And so he put us in touch. And that's when we had the conversation. And it just was like really, really thorough, in-depth conversation about their experiences. A lot of which kind of lined up with with our experiences with Liam, you know, and not entirely the same. Every child's gonna be different. But we could definitely draw a lot of parallels.
Dr. Heidi [00:47:45] How old is this kid?
John [00:47:47] So this kid now is, I want to say he's seven, and again, like, we haven't really interacted with them that much, but from the limited interaction, we had no idea, and so when when he kind of told me the approach that they had taken in terms of disclosing to everyone else, whereas initially my thought had been, let's just be completely open about it and let's tell everyone, you know, when he kind of explained what their decision process was I thought, OK, maybe, maybe that makes sense. And just talking to him about a lot of things ranging from temper tantrums to diet and, you know, school, you know, their experiences and decisions that they made and the outcomes of those decisions definitely helped us in our decision making.
Dr. Heidi [00:48:47] So it was kind of like a grape vine network that led you to him?
John [00:48:50] Very much so.
Dr. Heidi [00:48:52] And it was like, was he like automatically very open in terms of discussing it with you?
John [00:48:59] He was. I remember the first time I spoke with him, the first thing he just said was, how can I help? So, you know, and he really took a lot of time out and we had like email, you know, just e-mails going back and forth after that. Even somewhat recently, he had just asked me, you know, how are things going with Liam? You know, maybe I can give some helpful tips on on where his kid was at at that time. And so, yeah, they're definitely having that, you know, someone else who's sort of been in our shoes being able to relate their experiences. And, you know, the positive gains that they've had with with their child was definitely helpful for us. Definitely gives us something to strive for.
Kelly [00:49:47] So, yeah, I felt the same way with my colleague. Like, I feel like talking to somebody who's been through the experience themselves has really been helpful. Just, you know, hearing their advice, them calming us down and just like hearing all of their experiences has really been useful during this whole process.
Dr. Heidi [00:50:11] So it sounds like these connections to other parents has been just as powerful, if not more than talking to the professionals.
Kelly [00:50:20] It's been yeah, it's been useful both in terms of just emotional support and also information like they've given us a lot of valuable information.
Dr. Heidi [00:50:31] Yeah. And this has been a thread that's kind of woven through our conversation today, so Liam's ASD diagnosis is considered like mild to moderate from hat I understand, and you decided not to share the diagnosis with those outside of the family, you mentioned some of the select people. So you mentioned you arrived at that decision in part because of like talking with your friend, what other things were kind of going into that decision to not share it?
Kelly [00:51:01] I think the whole the labeling, I think that you mentioned earlier we were a little bit, you know, we just didn't want him to be.
John [00:51:12] I think I felt like that was that was sort of once you open that box, you can't you can't close it. So, you know you know, we're still open to the possibility that we might share it in the future. But for now at least, we figured that it's not hindering anything.
Kelly [00:51:33] Like for me there's always the worry, like John does have a large family, lots of friends with young children, and I don't know how people will react when, you know, they hear about Liam's diagnosis. And, yeah, there's always the worry, like, oh, maybe they don't want their children to play with Liam, like, you know, because they might have views of their own. So there's always that that worry for me. And obviously, I don't want that as a mother. Like, I want people to play with my child and stuff. So that's kind of been a little bit of a worry for me.
John [00:52:10] I think if, you know, for it, for every parent and parent, it's going to be different. They'll have to make a decision based on what's best for their child. You know, Liam's pretty high functioning, and so, you know, his ASD isn't creating any sort of an issue for other children at this time. So it didn't really seem necessary to to share that information, if it might, it just seemed that then potential negative impacts outweighed the positive at his time.
Kelly [00:52:45] Yeah, at this time.
Dr. Heidi [00:52:48] Like with that thought in mind, like if you were to share, what would be like the worst case scenario in your head of what could happen?
Kelly [00:52:58] Just people with other children his age not wanting to get together because maybe they maybe they feel like their children might pick up on some of Liam's habits, you know, like stuff like that. Like that would hurt me definately ff if something like that happened.
John [00:53:17] I kind of feel like that probably wouldn't happen very often. I mean, maybe there might be some people that that might behave that way. I'm more worried that it might be more subtle just in the way people behave around him. And I don't want that to shape sort of how he thinks of himself.
Dr. Heidi [00:53:37] Yeah, well, that kind of leads into my next question to. So Liam's still really young and there's gonna be issues that you'll inevitably have to navigate as he matures. Have you thought about sharing the diagnosis with him as he gets older?
Kelly [00:53:53] I haven't thought about that. That hasn't even crossed my mind yet. I don't know. I mean, I think eventually if, I think it really depends on how he progresses, you know? And if he gets to a point where he you can't even tell, like, I don't know if it's worth telling him.
John [00:54:16] And because we you know, we have received these from some professionals, this idea that it's possible he could come off the spectrum. So if that happens, then, you know, I think eventually we would probably tell him, but at what the appropriate age is, I'm not sure.
Kelly [00:54:34] Yeah, maybe not during the formative years? Yeah. Maybe when he's older. But yeah, I don't know.
John [00:54:42] And just to just emphasize, you know, I'm not holding out hope that he is going to come off the spectrum. You know, I'm I'm expecting the chances are he will will remain on the spectrum. But regardless of how he ends up, you know, I'd like him to have it have a fair shot, I guess, at reaching there by himself without the label potentially holding him down.
Dr. Heidi [00:55:12] Yeah, so we had originally started this podcast for families that were on the wait list for an ASD assessment during the Covid-19 pandemic. Given your family's experience, what do you think would be helpful for families to know who are waiting for an assessment either to know or I should say or to do while they're waiting?
Kelly [00:55:32] I think, for me I'm a big supporter of early intervention, if you can if you can access it somehow, like it's, I've read I did a lot of reading and, you know, something that came up repeatedly was like, don't wait for the assessment to start intervention. Just start it right away. It's not going to do any harm. You know, if you have any sort of doubts, just, you know, about speech or whatever, like just put them in, get them the therapy that they need early and as soon as possible, and then, you know, get the assessment and then you either continue that therapy or it's or you don't have to like it's not going to do any harm. That's what I would say. Just start some sort of intervention if you can.
John [00:56:24] Yeah, yeah. It's tough because a lot of parents I mean, everyone is strapped for either money or time or both. So, you know, some parents may not have any other choice, but but to wait for financial reasons or, you know, because of whatever their specific situation is. One thing I would say coming out of this whole experience, though, just speaking to kind of how I came onboard, I hope that people who, you know, don't necessarily know anything about autism or, you know, they notice that there are certain things about their child that where there are some deficiencies or, you know, some some areas that need to be developed that that seem out of place. And, you know, don't be afraid to get the assessment.
Kelly [00:57:18] Or screening.
John [00:57:18] Oh, yeah. Don't don't be afraid to go for the screening wherever that may be available, because it's so much better to have that screening done early on and just maximizing as much as possible the, you know, therapy and whatever other resources available right now to give your child the best outcome. You know, I feel like there's so many people that I've seen and, you know, I'm not a doctor, I can't diagnose other people, but, you know, I see them and I think, oh, you know, this person is probably on the spectrum and never received a diagnosis. And, you know, if they had early on and if they had received the, you know, the appropriate, you know, help, that they might be in a much better place right now. And so I think it's just much better just to get that screening done, and maybe, you know, everything will be completely fine. But at least if it isn't, you know, you can address it now. And I'm so glad that we did, because the improvements that we've seen with Liam over the last year are very significant. We were actually thinking that because even even between the point of the screening and the assessment, there was so much improvement that we thought maybe he's already off spectrum. Maybe maybe he'll be fine. Right. But one of the things that came back with the formal diagnosis was or when we were having a conversation with the doctors was that, you know, you also can't discount the past for the present. So, you know, we recognized from the day care that, you know, there are all these areas where he was behind or, you know, certain behaviors that were unusual, and so that obviously still plays a factor in diagnosis, which makes sense , so a lot of the reason that Liam is where he's at right now is because of the intervention with speech therapy and so on. So I hope that more people will take that into consideration of how much good it does and act right away.
Kelly [00:59:30] That was something that came up in my readings. Don't take a wait and see approach. There's a lot of people that will just say, oh, you know, he'll grow out of it. Just wait and see, you know? Don't do that.
Dr. Heidi [00:59:49] That's really excellent advice from both of you, I think. I think implicitly, John, what you're saying, though, too, is that there might be some fear involved at the beginning.
John [01:00:00] Absolutely. Yeah. Fear or actually, I wasn't I wasn't afraid. I literally just thought it was nothing. It was more just ignorance, I guess, or, you know. Yeah, it was blissful ignorance. I guess there's thinking that it is just how kids are and he'll grow out of it. Like I said he's not he wasn't displaying any severe characteristics. So you know, because most people don't really understand what autism is, they assume it's the worst case that they've ever seen on television. You know, like, it's it's not it's not that, like the vast majority of people on spectrum are functioning in society, I think. And we just don't realize it. We just think, oh, there's something wrong with this person.
Kelly [01:00:47] And you know that they're a little quirky or something right?
John [01:00:49] Yeah. Yeah. Whatever it is like, they think, oh, there's something wrong with their behavior or whatever, like that person may or may not have received a diagnosis on their own. And so, you know, I hope people will keep that in mind for their children.
Dr. Heidi [01:01:07] That's great. Yeah. And I think what's really lovely is that you've talked so much about how you've benefited from talking to some of your colleagues and your friends who have been through the experience and provided support. And in that same way, you guys are paralleling that by participating in the podcast today. So thank you so much for joining us. It's been a pleasure to have you. And hopefully, if we have our podcast going down the road, it would be great to touch base with you at some point in the future and see where you are down the road and where Liam is as he also grows and becomes that person that you're imagining him to be.
John [01:01:44] Absolutely. That would be great.
Kelly [01:01:45] Thank you for having us.
Dr. Heidi [01:01:50] If you've listened to this episode and have comments or ideas that you'd like to share with us regarding future episodes or what you heard today, feel free to e-mail us at ASDengage@hollandbloorivew.ca
Dr. Heidi [00:00:11] Welcome to ASD Engage a podcast for families of children who are currently waiting for an autism spectrum disorder or ASD assessment. I'm Dr. Heidi Kiefer, a clinical child and adolescent psychologist.
Maureen [00:00:24] I'm Mosleh a psychometrist.
Shawn [00:00:26] And I'm Shawn Brumby, also a psychometrist. We work on teams that assess children for ASD at Holland Bloorview Kids Rehabilitation Hospital. Each episode, we will present a topic that reflects concerns brought forward by families we work with.
Dr. Heidi [00:01:00] In this episode, we focus on sleep and bedtime, which can represent a peaceful slumber of revitalization for some, but a stressful time of butting heads and being overtired for others. Sleep problems such as difficulty falling asleep and repeated awakenings during the night are very common in ASD. Over half of children with autism, possibly as many as four out of every five, have one or more chronic sleep problems. These problems often interfere with learning and can contribute to behavioral challenges. Joining us on today's episode is Cathy Petta. Cathy is a registered nurse here at Holland Bloorview and has been facilitating sleep workshops for families living with autism for over nine years. Welcome, Cathy. And thanks for joining us today.
Cathy [00:01:46] Thanks for asking me.
Shawn [00:01:48] Cathy, can you start off by telling us what you do at Holland Bloorview?
Cathy [00:01:51] Yep, I'm a registered nurse. I work with the psychopharmacology clinic, working there for twelve years, which is basically a medication consultation clinic for children with autism and other neuro-developmental disorders and behavioral challenges. And I've also been part of the core Autism Treatment Network, the core team for the Toronto site. The Autism Treatment Network, is a network of clinicians and scientists across North America whose mandate is to improve medical care for children with autism.
Shawn [00:02:29] And so getting into sleep. How did you get involved with sleep issues related to children with ASD?
Cathy [00:02:37] OK, well, like you said, it's a really, really, really common challenge for families with children with autism. And it came through the ATN actually about 10 years ago, a couple of the scientists in that network were... what ...they did, a RCT, randomized control trial, looking at the effectiveness of behavioral intervention or sleep hygiene education for parents and to see how effective that was in treating or improving children's sleep. And I was actually one of the educators for that program for that research study. There was three sites and Toronto was one of them, one of the sites in that study. So that's where it started. It was formalized evidence based curriculum. And once that trial was over and the research kind of came out positive, like the results were good, I was using it in my practice as a nurse at the psychopharmacology clinic. I was kind of taking it on the road into the community. I trained some parent coaches at the old ABA program to deliver the program. And then a few years ago, I was able to offer it as like an actual clinical program here, at Holland Bloorview.
Shawn [00:04:10] So I'm someone who needs a lot of sleep.
Cathy [00:04:13] Yeah, me too.
Shawn [00:04:15] Many of us talk about how we feel when we're not getting enough sleep. So we often describe how tired and cranky we can feel or how unproductive and groggy it can make us. But what else is going on when the human body is deprived of sufficient sleep for long periods of time?
Cathy [00:04:32] Oh, boy.
Shawn [00:04:33] And how does this affect children?
Cathy [00:04:36] So that's a big question. But all those things that you talk about were actually described and looked at and measured in in the research study. So things like increase in core autistic behaviors, irritability, hyperactivity, aggression, all those kinds of behaviors can be exacerbated in kids who are not getting enough sleep. Irritability. Like for any of us.
Shawn [00:05:05] And how much sleep does a child typically need? And does that vary with age?
Cathy [00:05:09] So that's a really good question. And parents ask it a lot. So there's no real concrete answer. There's a kind of you know, there's an average amount of time that that you can say that kids so say under five, you know, the preschoolers need is about 11 to 13 hours a night average. But then you would be looking at a whole spectrum right. And then for the older kids, they need a little bit less, you know, maybe between eight and 10 hours or something. And whenever I say that to parents, they all go (gasp) that is not happening. And kids with autism spectrum disorder have been shown consistently that they are sleeping less. I mean, parent report, like you said, is huge for, you know, for sleep sleep disorders in kids with autism. The other thing, too, for parents to keep in mind is, especially for the younger kids, is that when you're looking at the amount of sleep a child is having, you're taking the nap time as well. So if your child is napping for three hours a day and sleeping for seven hours a night, they're getting 10 hours. That's that's what you know, that's what we are, that's what we are counting. And there have been you know, I've I've I've talked to so many parents about sleep. And one, I was I was talking to you, I think one of our one of the parents that I was talking to, his child was eight years old and wasn't going to bed until 1:00 in the morning. And then they were having to wake him up at seven for school. But what was happening was he was in a home daycare. He was going back. 8 years old, he was falling asleep at like four thirty, sleep until seven. And then parents were keeping him up. And so he was having like nine, nine and a half hours sleep in a 24 hour period. It's just that he was not he was not tired by eight o'clock to go to bed if he was waking up at seven. So nap time is really, naps are really important when thinking about, you know, sleep and sleep habits and sleep patterns.
Shawn [00:07:16] OK. And so we've also heard the term sleep hygiene. But I feel like it must be difficult to define with respect to the ideal standards. So, for example, so the basic steps, like we all know, like dental hygiene is very straightforward. Brush twice a day, floss daily, go for cleanings, but for sleep, I feel like people's needs vary depending on so many factors. So what exactly is good sleep hygiene?
Cathy [00:07:41] So sleep hygiene is I know it's a really kind of weird, seems like clean sleep. But, you know, sleep hygiene just describes the whole. I mean, if you're thinking about sleep, it's not just about bedtime, right. It's about what you're doing in the whole of the day. So, you know, when I'm talking to parents, I'm talking about developing good sleep habits almost from the minute you wake up, right. So there's probably I think there's four components of good sleep hygiene are behaviors; you're talking about the daytime habits and that's looking about, you know, light. You know, you want lots of light during the day. And not so much at the night because that's gonna be affecting your melatonin production. It's about exercise. It's about, you know, you know, good routines, that kind of lead up to bedtime. So daytime habits are one important factor. You're looking at, you know, the bed, the night, the sleeping environment, right. And so especially for our kids who can be so sensory, you're looking at setting up a sleep environment for these kids, which, you know, is not going to be setting them off and not going to be setting off their sensory needs. And I did I did give you a good hand out from Moira our OT that, uh, looks at setting up a really good bedroom sleep environment, looking at, um, like textures, looking at light, looking at noise, looking at calming environments, that kind of thing. And then so that's the second one. The third component would be the evening routine. And it's about, you know, especially with our kids, they love routine. They respond well to routine. So if you've got a good evening routine leading up to actual bedtime, kind of same time for dinner, same time for homework, same time for watching TV, same time, which should not be an hour or so before bed, by the way, because screens are not, although your child may be really calm and chill when they're watching the screen, screens can actually be pretty activating for these kids. And then and then the actual bedtime routine, which is really key, is like what leads up immediately before to going to bed, right. So it's setting up a really good consistent set of activities that train the child to go to sleep at the end of all these activities. Right. And I talk about setting this up. And if you can do it as a visual routine, even better, because we know that it's really, you know, kids with autism learn new skills well with visual routines and that one so that the bedtime routine is different from the evening routine in that it starts with, I always kind of say it's bookended between, okay, it's time to get ready to go to sleep, what's next, to okay time to go to sleep. And it's those six, seven, eight activities in between those two bookends that you set up. And it's, you know, it's individual for each child, right. And for each family in the context in your family, what is it you want those those activities to be, whether it's having a bath, having a shower. You know, most kids have to clean their teeth, maybe having a snack, reading a book, having some quiet time, having a hug with with the mom or dad, or the caregiver. And when you're setting up that bedtime routine, it's really important to look at what what is, because the idea is that you're going to have your child nice and calm and ready for bed right at the end of the routine. So anything that's kind of getting your child excited or is hard for your child you want at the beginning. So, for example, cleaning teeth might be really, a lot of our kids, any kids, don't like cleaning their teeth, right. So it could be a bit of a battle. So, you know, you would put cleaning teeth at the beginning of the bedtime routine. And if it's too much of a battle, like, don't take it out of the bedtime routine and do it right after dinner. Right. Or even something like having a bath for some kids this can be really calming and they can just get whoah chilled out and ready for bed and other kids like, yay, you know, let's go splash, and although they love it, it's not calming them down. So again, you would be considering do you want that bath time to be in your bedtime routine? But again and again, I've sent you resources with pictures for bedtime routines. And I always say to parents, really, and because our kids can be pretty literal, is really end the bedtime routine with the pictures or the writing with like, you know, go to bed, go to sleep. You know, like it has to be kind of black and white for it to be successful. The families, when I talk to them about this, they love it. A lot of them will say, yes, we've got a bedtime routine, but we don't do pictures. It just kind of happens. I feel like it's important and I feel that families feel that it's been quite successful if we really formalize it and really get it down. And I've also sent you a video showing parents how to teach their child the bedtime routine as well, because that's that's another, that can be difficult.
Shawn [00:12:52] Yeah, and those hands will be on our website for people to look at afterwards.
Dr. Heidi [00:12:56] Great. A lot of great resources. So you were highlighting the four points of sleep hygiene, including kind of having a bedtime routine, so events leading up. We are often dealing with a lot of families and different households. Every household is different with respect to physical space, like we see families in Toronto where a lot of people might be sharing one bedroom and so on. The number of family members differs and even schedules too where parents might be leaving for work over night and stuff like that. And a lot of routines are developed around those types of things. So how does a family know if they have a good bedtime routine?
Cathy [00:13:37] How does a family know?
Dr. Heidi [00:13:39] Yeah.
Cathy [00:13:39] That's that's a good question. And that is a question that I would ask a family like, do you have a bedtime routine? And a lot of families will say, yes, we have a bedtime routine, and then I would kind of try to dig down. So what is your bedtime routine? Right. And some families, they do have a good bedtime routine. It's just that sometimes it's not consistent. Like you said, sometimes they haven't really taught it to the child, right. So although they have a bedtime routine, it's not something that's specific to bedtime. It's just about, OK, now we've had dinner now we can do this, now we can to do that. So I really feel like just nailing it down and getting it specific to five or six different activities that are really, the child really knows are specific to bedtime. And then at the end of this bedtime routine, once completed, you're training your child's body to actually go to sleep. And the expectation is really, really clearly conveyed that at the end of this routine, it's actually going to be time for sleep. Now, like you said, I mean, yeah, I mean, I think one of the last families that I was in my program last week, I mean, there were three families in like a three bedroom apartment and each family had a bed and, you know, the the sleeping arrangements were they were all in. And that's common right, That's common. And so it is, it's up, for me, I just leave it up to families to decide what is your goal, you know, what is your goal. And that's what I start off every session with. What is your goal? What do you really want to get out of this session and how will you know that you've gotten what you need out of this session? Right. And for some families is just to know that sleep is difficult. You know that they're not, their child is not, they're not alone. Right. Their child is not an anomaly. Every other child is not sleeping 12 hours a night and their kid is up every two hours, the only one. And some families I feel like that would be the only thing they take away from that is that they know that it's difficult and they're just able to deal with it. Some families want real, you know, specific strategies. And there's a lot that we talk about. And yet in a situation where you've got four or five people in a bedroom, what what is your goal here? You know, do you want your child to learn to fall asleep alone, you know? And so there are then strategies to help you deal with that. Do you want, how are you going to deal with the other siblings? You know, a lot of families, if they decide to do this, they'll put all their kids on the bed time schedule right they'll put them all on. And some of the older children actually like helping, the one, the other children, like helping. Some families decide they're just going to deal with one kid at a time, like it's so different. Right. It's so different. It's just hard. It's not easy like sleep, these sleep issues are not easy and there's no easy fix. And they all, the other thing I always preface every session I do, I'm not going to be able to wave a magic wand and make your children sleep better.
Dr. Heidi [00:17:04] Yeah. Yeah.
Cathy [00:17:05] I'm just not. It's it's up to you to decide what it is you want to be doing. What's your goal. And which out of this you know, this out of this conversation and these strategies that I'm presenting to you, do you feel are going to be able to work in the context of your family with your child? And I can help and support you through that.
Dr. Heidi [00:17:27] Well, Cathy, we thought you had a magic wand, that's why we invited you on.
Dr. Heidi [00:17:29] No, I don't. In psychopharmacology clinic a lot of the kids come to us with really, really well ingrained sleep problems that have been going on for years, because by the time they get to us, it's 12, 13, 14. And by that time, we're looking for medication. And the truth is there is no medication, sleep medication that's been approved for use in children. None of the, you know, like zopiclone or imovane. We do use those and we hope to use them short term. But they're not you know, they're not approved for use in children. Melatonin is the big one that everybody's heard of. And a lot of our kids in the sleep, in the psychopharmacology clinic are on melatonin, lots of, I've sent, I think there was this resource on melatonin for the parents to look at in what I sent to you guys. So there's lots of evidence and research into melatonin safety and, you know, effectiveness in children. And we've had kids in the psychopharmacology clinic who've been on it for many years.
Dr. Heidi [00:18:34] And for those who don't know who what melatonin is, how would you describe it.
Cathy [00:18:36] So melatonin, it's a hormone that your body produces naturally. And it's it regulates sleep. That's basically what it does. And you can buy it over the counter. It doesn't need a prescription. And in various doses, I think from one to one till 10. I think research has shown and anything up to nine milligrams, anything after nine milligrams does not show any added benefit. But any clinician will recommend you start at the lowest dose, which I think is one milligram, to see if that works because for some kids, it can knock them out. And, you know, work up to higher doses if you need it. But anything over nine is probably not worth it. And there's two forms there's immediate release and then there's sustained release. I think most evidence is for immediate release. It lasts for about four hours. It lasts for two sleep cycles. So it's not going to help your child with night awakenings. It might help them go to sleep, but it's not going to help them with night awakenings. And then the sustained release in theory, would last for eight hours. It's slowly released over the night, but I don't think there's as much success with that, to be honest. I mean, there's various recommendations on how to give melatonin. I know that Wendy Roberts, who I used to work with, would recommend to, you know, that melatonin to work with a natural release of melatonin would be best given you know, when your child is already calm, already in a darkened room and all ready to go to bed, and then you would give it. And then there's another school that would say you may want to give it around dinner time so that then it works with. So I'm not really sure when the best time to give it would be. The doctors may have a little bit more to say on that and, but it's always I would never recommend it. I would always say, you know, go to your doctor and ask them; as a nurse, I wouldn't be recommending them, even supplements without them running it by their doctor. And the other thing which we haven't talked about, and I don't know if you're going to be asking it. Well, I mean, the other thing that I first want to, you know, talk about with families is, you know, you really have to eliminate medical or physical contributors to sleep issues. And they're kind of sometimes overlooked. Right. Especially with our kids with autism who may be nonverbal, who may not be able to say what's going on with them. And we see it's a sleep issue and that's the one that's gotta be fixed. But anything that's causing any kind of discomfort or so like, you know, constipation is a really common cause of sleep issues. I mean, I don't know if you've ever been constipated chronically, but it's really, really uncomfortable and it's gonna keep you awake at night or wake you up at night. Sleep apnea. So, you know, if your child is having, like, episodes where they're stopping breathing even like for milliseconds at night, that is also going to affect sleep. And that would have to be investigated by a doctor. Reflux, you know, is a really common like acid indigestion I guess is what the common, the common word for it is. Seizures, kids are having seizures at night. If there's suspicion of seizures, that should definitely be investigated. Any kind of discomfort, dental pain.
Dr. Heidi [00:22:07] And some of those things too like you're saying, constipation, acid reflux as adults, we have a hard time knowing what that is for a kid they probably just don't know what's going on, and there's a lot of pain involved.
Cathy [00:22:19] So it's really important if, you know, if your child is just started with new sleep issues to get, go to the doctor and get that all assessed. And even if they've got chronic sleep issues to get them periodically assessed, right. And the other one is medications, like if your child is on medications and some medications can affect sleep and thinking, you know, the most common one would be the ADHD, the stimulant medications, which one of the side effects is, you know, sleep disturbance, especially for the longer acting ones. Yeah. So that is something with all behaviors, though. That is something not to be, you know, they have to be ruled out before you're looking at a behavioral approach.
Dr. Heidi [00:23:04] So I was reflecting a little bit on what you were saying, Cathy, about when you were responding to what is a good time routine and you can't wave a magic wand. But I was also thinking too at times, parents might need a little bit of help or guidance, recognizing when it's time to change a routine. It's not always going to just stay static. Right. So oftentimes, like as siblings are getting older implementing different bedtime routines depending on age, because otherwise bedtime becomes really stressful when you have to put all three kids to bed at the same time. Another thing that comes up with the younger kids, too, is often parents giving like a bottle before bed when they're preschoolers and then having to wake them up or them waking up to use the bathroom, which can interfere with toilet training as well right. Do you find that sometimes like
Cathy [00:24:00] That is, it's good that you brought that up, because in relation to another thing that I am talking to parents about is, you know, when you're thinking about so parents have issues with the initial falling asleep at night, but then also night awakenings.
Dr. Heidi [00:24:15] Yes.
Cathy [00:24:15] Right. And one of the things that we talk about is that for your child, so for your child to be able to, everybody wakes up at night, basically, right. We're not all solid asleep, like deep asleep the whole time. Sleep is in cycles, right. The sleep cycles. And so at the top of the sleep cycle, all of us, every single person will either wake up or be less deeply asleep. And then because we know how to kind of put ourselves back to sleep, we would, for those of us who is not insomniacs, I am an insomniac, by the way. But, you know, you would you know, you would be able to you would know how to put yourself back to sleep or you whatever. So when parents say my child and this is usually an issue when the child is sleeping with the parents. Right. That they're aware of the child waking up every couple of hours because the child wakes them up. But it's not the waking up, you know, it's not the waking up that's the issue. It's this not being able to put themselves back to sleep without mom soothing them or giving them their bottle or whatever it is, or even if they're in their own bed, they're waking up and parents have to go in and give them a bottle or soothe them or whatever it is they do. And so what I really stress is and what's been taught to me is that if, what a child needs to put themselves back to sleep again when they wake up at night is the same environment as when they went to bed. So if your child, if you're putting your child to bed in his own bed, but you're lying with him to help him go to sleep, he's got the light on, he's got the TV, he's got a bottle, and that's all putting him to sleep, and then as soon as he's sleeping, you kind of leave him, when he's when he wakes up or, you know, his arousal is, you know, fairly light. He's in the lighter stage of sleep and he wakes up. He hasn't got any of those things to help him put back to sleep. So he's calling for mom. Right. And so one of the things I talk about is all those things are fine if that's what they need to fall asleep. And if you are fine, you know, tons of families co-sleep, which is, you know, you know, individual choice. It's all good. But just know that they are going to need that kind of consistent when they wake up all those things pretty much have to be in place for them to go back to sleep again, to be able to put themselves back to sleep again. Otherwise, you're going to have to help them. So some families like their child falls asleep in front of the TV, which is good but then the TV is going to stay on all night so that when they wake up, they can fall asleep. You know, and there have been especially with our kids with autism, there's a whole and always a little twist with our kids. They're so great. They're so cool, you know, that families are finding that they like music to fall asleep and they'll fall asleep during a certain song. Right. But it has to be in that certain, it can't be you can't just play the same song, it has to be this song, this song, this song, then this is the song they're going to fall asleep to, right. So when they're waking up, that all needs to happen.
Dr. Heidi [00:27:29] They need the same sequence right.
Cathy [00:27:29] So I don't know if that answered your question.
Dr. Heidi [00:27:32] Absolutely. Yeah. Yeah. Actually I had never thought about that before. But that's really interesting. Yeah. You touched on briefly naps before as well. It can be difficult to manage sleep when especially children are in daycare setting during the day and naps are often part of that routine at the center or at home daycare. Are there any dos and don'ts around napping?
Cathy [00:27:55] So pretty, the most important thing around napping is like no nap, I mean, naps should be done by 3:00. 4:00 o'clock. And you're also looking at what time do you want your child to go to sleep. Some families, like I have one family who doesn't want their child to go to sleep until 10 o'clock because dad comes home late from work, they like to have a family dinner. And so they they're okay with, you know, 10 o'clock. So then you're looking at a later nap. But that's what you've got to remember, is the later your child is sleeping during nap time, the later they're going to be going to sleep. The longer nap they have, the less sleep they're going to have at night. Daycares are often an issue, especially when the child is just that little bit older, when they kind of want to give up their nap, but they can't. So I have actually talked to families about talking to daycares to see if they can shorten naps or have, you know, have them doing something else while the children are the other children are sleeping. I've actually written letters to daycares to because some families are too afraid to ask. But I think that I think just the golden rule about naps is the same with sleeping is routine, you know, same time for waking up, same time for going to bed, same time for nap. And we didn't talk about that. But that is another thing that is really important, especially if you wanting to train the body, you know, for sleep at certain times is same time for bed, same time for going to sleep seven days a week as much as possible within an hour or so.
Dr. Heidi [00:29:28] Yeah, I like what you said too by three or four a nap should be done. Yeah. I've talked to a lot of parents and families where a nap is happening at like six o'clock at night and then.
Cathy [00:29:40] And again that's OK. As long as they know that that's going to affect the bedtime. Right. There's no magic formula to letting your child have a nap until six and then getting them to bed by eight. You know, and if that's again, it's just about talking to families about what are your goals like, you know what what is it that you want, what are you comfortable with. What are you okay doing, this whole sleep hygiene intervention thing can be really, really hard for the whole family. You know, any intervention strategies you decide on doing, the whole family has to be on board. You know, it's not easy. It's not easy. But, you know, and some families will say at the end of a session, can't do it, like can't do it, some families after trying for a few days will say that was way too hard I can't keep doing it. And so what I, and the thing is, what I always suggest and what any sleep person will say is that, you know, decide on a time when you feel that your whole family is going to be all be able to be on board when it's a time when you feel able to deal with sleep deprivation because it's not going to be easy. Your child is probably going to fight you on it to see if you really mean it. And that you can do it for two to four weeks consistently because we're building new habits and they take time to build new habits. And you have to go through that classic behavioral extinction burst where, you know, you've put an intervention in a change for the child, the behaviors and the crying and the coming out of the bedroom are going to get higher and higher until they kind of reach a peak where it's like, okay, so I guess mom and dad really mean it. And then the behaviors will go down. So. And you have to decide if that's what you really want to do.
Dr. Heidi [00:31:32] Mm hmm. I, I think it's good to hear that it's it's a whole family type of situation virsus it just being the onus on one person to be looking after that.
Cathy [00:31:43] Yeah. Yeah. And the whole family have to want the same thing. Like if mom is okay with going in and out of the bedroom and the little one crying and dad isn't then you know, something needs to be resolved there. I've also had families where Dad has said, you know, we both want it. But she just can't do it because whenever the baby cries, I've even had one family where mom went to her mother's for two weeks so Dad could train the little one. Oh, yeah, and another thing that I had with one of the dads asked me if if he let the little one cry and she was like four or five at this time, was her autism gonna get worse? So that's also, you know, I haven't heard that one as well. But there's all kinds of concerns in the background around dealing with sleep and letting children be distressed that that are concerning to families as well that you have to take into account and be sensitive to.
Shawn [00:32:46] Cathy, you also mentioned earlier, when we talked to you about talking to neighbors potentially.
Cathy [00:32:51] Oh, yeah. No I've done that! Because a lot of my family's they live in like, and some families are saying we're at the point of being evicted. Right. Because our child is sleeping and screaming at night. And so, again, I've written letters. I've told them just go and talk to your neighbors and say that you're gonna be doing this for two, two to four weeks, please just, you know, be patient and just let them know what's going on. Right. And some families have done that. And that's been okay. But they just need a little bit of encouragement to do that. Yeah.
Dr. Heidi [00:33:32] Sounds like sleep training involves a lot of letter writing on your part.
Cathy [00:33:35] Oh yeah. It can do, it can do. Some families will say, oh, can I do that. I could go and knock on the door, I say yeah just go and tell them, just tell them what you're doing and tell them what you're trying to do.
Dr. Heidi [00:33:46] You're preparing them for the fact that like any change that you introduce sometimes things get worse before they get better.
Cathy [00:33:51] Oh yeah. We know that things do get worse before they get better. It's actually a thing in behavioral analysis terms. Right, the extinction burst it's a thing. It does.
Dr. Heidi [00:34:05] Yeah. It can be really difficult for parents to know when their child is truly tired. So they're trying to read the signs, and often times they can see by, for example, the child's body language or behavior that they seem tired. But then they put the child in bed and then the child seems to come to life and have no interest in sleeping at all. So some parents tell us that their child knows when they need to sleep. And in some cases, the child's sleep patterns seem to to rule the household. So what are your thoughts around following the child's lead with respect to sleep?
Cathy [00:34:40] Again, I think that that is entirely up to families. Like I really do. I think the problem with that is you can get into some really crazy situations with following the child's lead. It may be that the child's lead is I mean, and then we're not talking about babies here. Right. But the older children where you're following their lead. If it works for your family and you feel everybody's getting enough sleep, I wouldn't argue with that. Again, it's all down to parent's goals. I did have a family really early on who followed the child's lead, and he was about nine years old, this little guy. And so, you know, it started off with I think I mean, he was in his own bed and then he got sick or something. So then he was coming into his parent's bed and they were okay with that. And then he didn't want to be in the bed. He wanted to fall asleep on the couch, but he needed the family to be there. And then they would take him to bed and then he would go back down on the couch. And so the mom needed to be down there with him. Anyway, there was this whole set of circumstances over about a year. And by the time they came to me, he was sleeping on the couch. Mom was on the floor holding his hand. And every time he woke up, she had to read him a book. And so this is where they had gotten to. Right. And so, maybe that's not a problem. But the problem was both parents were lawyers, both and they had to, they... were.... Everybody was not sleeping, including the little one. Right. And so it was pretty intense. But we did actually end up getting him, their goal was at that point, they wanted to get him back in his own room, in his own bed, sleeping without them. It was very, very clear what they wanted. So, again, I again, I always follow families leads. I. You know, I don't feel like I've got any right to say this is what you should be doing with your child and this is what, you know, your child, how they should be sleeping. But you tell me what you want. And if I can, I can help you with that.
Dr. Heidi [00:36:51] So, Cathy, in a previous episode, we were talking about how children with ASD often experience sensory input very differently than many of us. So we heard stories of children who refused to eat certain foods because of their texture, or play with certain toys because of their color, or won't enter certain settings because of specific smells or noises. Do you see any similar sensory associations with sleep?
Cathy [00:37:17] Yeah, absolutely. Absolutely. There can be. Textures. I mean, when you're looking I mean, you have to know your child, right? So if he's in pjs that are scratchy in some way, or he can feel the seams or the label or something, then, yeah, that that could be affecting sleep. Sheets. Some kids like warm, some kids like cold. So you've got to know what you know, you may think that they're too warm, but they may not be, you know. So these are the kinds of investigative things or knowing your child is important. Some families do have white noise. So fans, there's even white noise machines, I think, and they find that that helps. The thing is, with those the same as what we were talking about before, for them to be effective, they need to be going all night right, not just to help the child go to sleep. But I never recommend introducing, like, white noise if they haven't already done it, unless they think and if they decide that they want to do it, that's fine, but, you know, it's kind of better if they're not already dependent on that to kind of, you know, just to continue with that and maybe use some other strategies. Light. You know, some kids can be like the slightest little bit of light can be affecting them. So we've talked about temperature, noise, light, textures. I think that's pretty much it. And there is, there is a resource on creating a really good sensory bedtime, bedroom environment that I sent to you guys. It's really good, actually.
Dr. Heidi [00:38:54] Before, Cathy you were talking about helping kids to wind down at the end of the night so they're not hyped up and able to fall asleep easily. And oftentimes, though, we are encountering families whose kids were watching TV or on tablets and screens and stuff like that right before bedtime. Are there any good guidelines about screen activities before bed?
Cathy [00:39:16] So the guideline for screen is what is recommend and parents will go (gasp) is like two hours before bed probably no screens, right? It's not possible for a lot of people. So an hour would be really good for no screens, and screens we're talking about TV, computer, tablets, cell phones. And it can be hard because our kids, all kids, adults, you know, we're I don't know, we're welded onto our electronics. All of us. So it is difficult. But I guess it's important for a family, for parents to understand is that although your child seems nice and calm while they are playing on the screen or watching TV, there's actually a lot of processing, light coming at them, that is, you know, can be I don't know if I'm using the scientific terms here, probably not, but activating the brain that is going to make it harder for them to fall asleep. And so, again, it's a decision to be made. I know that on tablets now you can, there's like what's it called, the blue screen, the blue light thing; I read on my tablet before I go to bed, and I always put that, put that down because a lot of the kids are reading on their tablets and they're not having books. And so, and it does help them to to to go to sleep. So that's what I'd say about screens. The other thing I wanted to say as you were talking about, like, getting them all calm down. I just have another story and I love this story. So one of the very first families that came through the research study actually was a mom and a dad, and they had five boys on the spectrum, five boys on a range of spectrum. And what Dad loved to do every single night, and Mom, and I was talking about this and mom was saying see see you shouldn't be doing that, you shouldn't be doing that. And so what he would do, like just before bedtime to get them tired out was to take them down into the basement and have a game of mini sticks. But it was a great time. Like the kids loved it. Dad loved it, mom was going crazy because then she had them all to try and calm down and go to bed. But I guess the other thing is about exercise right before bed. Like we talk about, you know, exercise during the day is really important because you've got to get your body tired. So you exercise is really important, but it's really not the best time to do it. An hour or so before bed. You want to be doing it either earlier in the evening, you know, or during the day. But a game of mini sticks with five kids and dad is not just before bed is not a good thing to help kids calm down or tire them out. Or another thing is, you know, a lot of our kids like jumping on the trampoline later on doing some kind of movement at least two hours before bed.
Dr. Heidi [00:42:16] Nothing like a relaxing game of hockey.
Cathy [00:42:18] I know that's my favorite story. I love it.
Shawn [00:42:24] So Cathy we've been hearing from some parents about how the pandemic has affected many of their household routines, sleep being one of them. Has this been coming up in your workshops?
Cathy [00:42:34] It's been coming up everywhere across the board, as I'm sure it has with you. Yeah, yeah. I mean, I don't even know what to say about that, to be honest. But yes, it's come up when psychopharmacology clinic in terms of behaviors, in terms of kids who've gotten their sleep totally turned around now they're going to bed at 2:00 in the morning, they're waking up at 12, they're, you know, a lot of families, especially during the initial lockdown when they couldn't even go out, you know, using screens. You know, there's nothing else for these kids to be doing. So, yes, yes, I've got no answer to that other than yes, what I'm finding right now is with the kids going back to school and then getting back on their regular routine I'm not seeing it too much yet, but the hope is that, you know, first of all, they're going to school, they're doing more exercise, so they've got their daytime sleep hygiene happening a bit. They're using their brain, they're getting their body more tired out, they've got their routine of going, they're up at 7:00, you know, whatever. And then you can get your evening routine happening around dinner and homework and then your bedtime routine. So the hope is that now that there's this, kids are back to school and kids are getting back on routines and getting tired and doing some exercise, that hopefully it will correct itself. But you know how it is with our kids, right. It takes a while now. It's a big transition and a big change.
Shawn [00:44:09] And routines seem to be the main thing.
Cathy [00:44:12] Yeah. I mean, for any of us with sleep. Right. If I have to, I'm in bed by nine o'clock. If I'm in bed by 10:00, I'm not asleep til 1:00 because I'm, I don't know what happens, you know what I mean? Like, it's just this routine just seems to be really important for sleep. And so I got no magic answers. With the Covid epidemic, I just know that it's across the board. I take, you know, with my work with the psychopharmacology clinic, where I'm taking calls from families and then behaviors and medications and side effects, that theme across the board. And tons more screen time than they've ever been. But then, has ever been allowed before. And now we've got Zoom school, right? And so it's more and more screen time. Yeah, yeah.
Dr. Heidi [00:45:02] Also heading into fall and winter.
Cathy [00:45:04] Yeah. Exactly. Exactly. But, you know, I mean, all I can. You know, it's it's just, you know, exercise is really important, outside air is really important. And as much. I mean, light during the day is is really important. And, you know, we would love natural light, but when Canadian winter, how much natural light do we get an hour a day? I don't know. Not much. So, you know, like bright lights on in your house during the day and, you know, you can even do things like, you know, like dimmers just to get your house getting gradually darker as as the night goes on.
Shawn [00:45:42] Like they do on planes when they want you to go to sleep..
Cathy [00:45:45] Exactly, that's exactly what it is. Well, that's that's to do with your melatonin production and utilization rate. So melatonin is regulated by light and dark. So in the morning, you know, it's recommended that as soon as you wake up, you get a great, good blast of light. You open your curtains, you get a good blast of light, turn on all the lights. And so, you know, and as the light goes up, your melatonin production is going down. And then as the evening progresses, as it gets dark, your melatonin production is going up.
Dr. Heidi [00:46:14] So, Cathy, with the strategies that you've talked about in helping to think about how to promote better sleep and bedtime routines, what are some of the challenges that parents face that come up when you're trying to get them or help them implement these strategies?
Cathy [00:46:31] So I think one of the main, what commonly comes up is, oh, I've tried it and my child, it hasn't worked. And it's not that I don't believe parents, I believe they have tried it and it hasn't worked. But then I'll say, so how long did you try it for? And and so these these strategies were particularly talking about, well, you know, they want them to sleep in their own bed and they'll go through the whole bedtime routine. And then they'll leave them in their bed and then they will leave. And then the child starts crying or starts coming out. And their goal is to have them sleeping in their bed. It's not Cathy recommended. That's their goal. And so they will try it for two or three nights and the child is crying and they're coming out, and they'll say it hasn't worked. Remember to change a habit, it takes a lot longer than two or three nights. And so it could take two weeks to a month. So consistency is important. If that's what your goal is. Right. To be consistent so that your child knows that yes this is what's gonna happen, I have to sleep in my bed. And that's where the bedtime routine visual schedule comes in really handy, because then your child has got expectations that he knows what's expected of him. And then you can refer back to the visuals. So I think that's the most common is, we've tried it. It doesn't work. He's still crying. And you have to decide whether you know, whether you're going to be able to tolerate or whether you want your child to be crying and resisting the new behaviors you're expecting of him. I think that's the commonest and it's the toughest. Right, because the longer that goes on for, the tireder you're getting. Especially when it's happening in the middle of the night. And you have to do exactly the same thing. Right. Keep taking them back into bed or ignoring it or whatever, whatever it is you decide, you know, you want to do, it's tough.
Dr. Heidi [00:48:37] You also alluded to the importance of the consistency between parents too. Describing how one parent had to move out for a couple weeks to get a schedule on track eh.
[00:48:51] Yeah. No, it is. It's you know, and then, you know, our child knows, children know. Right. They know that if they keep it up long enough. The one that usually comes in is gonna come in. Right. Or, um. It's hard to leave your child crying. It's really hard. You know what? At the end, like I always say this right at the end of every session is that, you know, take one or two, decide on what your goal is or we decide on the goal, you know, one or two of these strategies that you think you can implement for two to four weeks consistently every night. And if then you feel like you've given it a really good try consistently for two to four weeks, and it's still not working then I would go back to your Doctor. And that's what I always. But it's really useful to have even a log of what you've tried. You know, a log of your child's sleeping and waking time, the interventions you've tried. So you can take it to your doctor and say, look, I went to see Cathy Petta at Holland Bloorview, I listened to Cathy Petta on the podcast, she said to do this every night for two to four weeks, it's not worked, and this is what I've done, because whenever you go to a doctor, they first of all, they may, you know, eliminate or, you know, rule out some medical stuff and then they're going to give you the sleep hygiene education, maybe not as detailed, you'll probably get some ideas and then that's the first thing they're going to do. So it's really good to have a log and documentation of what you've tried, how long you've tried it for, how consistent you've been and your child's response to it.
Shawn [00:50:31] Okay, Cathy, so what's the one takeaway, if there is one takeaway, that you can give parents who are currently struggling with their child's sleep?
Cathy [00:50:39] Well, I don't have one take away, actually. I can't have one of anything. It's impossible. I have a few. So the first one is like, you're not alone. You're not alone. It's common, it's very common in kids with ASD to have sleep issues. I would say decide on one goal. Like try not to do too much. You know, like just decide on one aspect of your child's sleep that you want to work on. And, you know, a strategy or intervention that you feel that you can do consistently. Like I've said this alot, consistency is so, so important. And, you know, good luck. Good luck. Whole family onboard. It's not easy. It's really not easy. I don't want to leave anybody with the impression that if you do this, this, this, everything's going to be cured. It's not easy. It takes a lot of commitment and persistence on parents part.
Dr. Heidi [00:51:37] So thank you, Cathy, for joining us for this episode and talking about sleep, which it seems like a more complicated issue than one would initially think. But we appreciate your insights and all of the resources and handouts that Cathy mentioned throughout the episode will also be linked on our website.
Cathy [00:51:55] Great. Thanks for having me, guys.
Dr. Heidi [00:52:02] If you've listened to this episode and have comments or ideas that you'd like to share with us regarding future episodes or what you heard today, feel free to e-mail us at ASDengage@hollandbloorview.ca.
Department of Occupational Therapy, University of Alberta
Dr Heidi [00:00:11] Welcome to ASD Engage the podcasts for families of children who are currently waiting for an autism spectrum disorder or ASD assessment. I'm Dr. Heidi Kiefer, a Clinical Child and Adolescent Psychologist.
Maureen [00:00:24] I'm Maureen Mosleh, a Psychometrist.
Shawn [00:00:27] And I'm Shawn Brumby, also a psychometrist. We work on teams that assess children for ASD at Holland Bloorview Kids Rehabilitation Hospital. Each episode we will present a topic that reflects concerns brought forward by families we work with.
Maureen [00:01:00] Many children with ASD have trouble with toilet training for a variety of reasons. As a result, they often take longer to train, in fact research has shown that on average, children with ASD require 1.6 years of toilet training to stay dry during the day and sometimes more than two years to achieve bowel control. So on today's episode, we've invited Ishanee Jahagirdar to join us to talk about her work with families of autistic children, specifically as it relates to toileting. So let's start, as we always do, by asking you to tell us what you do at Holland Bloorview.
Ishanee [00:01:35] Sure. So I work as an occupational therapist with the Communication, Learning and Behavior team, which means I work with our clinicians here to do some diagnostic assessments, as well as to do occupational therapy assessments and consultations with families, which really just means helping to support them with everyday functioning related concerns, right so toilet training is one of the main ones that comes up all the time.
Maureen [00:02:02] And you've been involved in the design and delivery of a workshop that's geared specifically towards toileting strategies for parents of autistic children. So can you maybe give us an overview of what you cover in that workshop?
Ishanee [00:02:14] Sure. Yeah. So like you mentioned, toilet training is a big challenge for a lot of the kids we see. Right. It takes them a lot longer to get toilet trained than we see with other typical kids. So a lot of that workshop is geared towards talking about so what are the challenges that we see? And then talking about strategies to extra strategies that may be needed to work with this population to get to toilet training.
Maureen [00:02:42] Can you describe for us some of the challenges that parents are experiencing with respect to their child's toileting?
Ishanee [00:02:50] Sure. So a lot of the common ones we see is one of the main things we see with children with ASD is oftentimes they can have delays with expressive and receptive language, which means, you know, when you're saying things to them, they may not necessarily understand at the level you might expect. So when you say, OK, it's time to go to the bathroom, they may not be processing that language. So one of the things we talk about is communication strategies, right, to help support the language delay. The other thing we see is motor delays. So there's research showing that a high percentage of kids with ASD also present with motor delays right. And you don't really think about toilet training as a motor skill. But when you really think about it, there's so much that goes into it from you have to pull your pants down, put them back up, you have to even support yourself sitting up on the toilet and then washing your hands. So there are a lot of motor components which go into it, which can impact toilet training as well. And the other thing we see a lot is sensory difficulties. So things with sensory processing, there's so much going on in that bathroom that our kids aren't used to. And a lot of times if they're showing differences in the way they process some of those things, that can result in anxiety or challenges going to the bathroom. The other really big thing that we see is really just that self-regulation piece. Right. So a lot of our kids, you know, when you try to start toilet training, parents will say, oh, they just have a big tantrum when you try to take them to the bathroom. And a lot of times that's actually related to that dysregulation. Right. So it could be a difficulty transitioning. It's actually not that they are having tantrums or it's not really a behavioral thing, it's their response to having to do that challenging transition, which they're not used to because it's not a part of their regular routine yet. So I think one of the things we forget is that these kids have been doing it this way. They've been going pee or poo in their diaper for two, three, four years, and now all of a sudden we're asking them to do something different. They don't understand why. It's such a big, drastic change for them that we have to really work on that transition and that regulation piece as well.
Maureen [00:05:02] Yeah. So interesting and so complex, right. Oftentimes these kinds of workshops can take on a life of their own right, with respect to the content. Have you found that the content of your workshops evolved from feedback that parents have been giving you.
Ishanee [00:05:19] Absolutely. I think the more we talk about these things, the more things come up, right. And a lot of times parent feedback is so important because really the reason we do them is to support families. So, of course, we want to hear what they're saying. And a lot of the content, actually, some of the tangible strategies that we provide is little nuggets of information that I've picked up from families.
Maureen [00:05:41] Yeah, yeah. So can you give us some examples of some tips or techniques that you've learned from families? Can you think of any?
Ishanee [00:05:48] Yeah, of course. So there's lots of little examples. There are one of the ones I learned early on was from, so we talked about sensory challenges earlier on. I was working with a family and the child was having a really hard time with the wiping piece. Something about the texture of what they were using before just wasn't working for them. Like wet wipes can be so cold and feel yucky to some kids. So I was introduced to the Wipe Warmer, which is a very lovely device that you can use to warm up your wipes. And then it doesn't feel so cold and yucky. And with that device that was life changing, the kid had no problems with the wiping.
Maureen [00:06:24] Wow. And I've never heard of such a thing. Wow, that's crazy.
Shawn [00:06:30] So Ishanee, are there any facts that you find parents are often unaware of with respect to toileting or any misconceptions.
Ishanee [00:06:38] Yeah. I mean, I think we're just used to thinking about toilet training as such a regular part of life. And I think parents don't always realize what a drastic change it actually is for their kids. Right. And especially for the kids we work with. It really is, I almost think about it as a behavior change. I think about like how many times have I tried to change the way I eat or the way I do exercise? It takes time and it takes a lot of effort and resources. And I think that's something we don't necessarily realize just because oh toilet training is just another thing like eating. It is. But initially to get to that point, it can take a lot. And that's one of the things I always talk about, too, is parent readiness. Right? Because it takes so much time and resources and energy. Sometimes you think, you know, OK, I want my child to be toilet trained because I don't want to be using all these diapers and they're expensive, and yeah, absolutely. But I think parent readiness is a big component of it because like I said, it does take a lot of resources. So sometimes if you're working extra hours or if there is a big change in the family dynamic or you're moving, it may not be the best time. I think that's something that maybe doesn't come up often is really thinking about that. Are we as a family ready to do this? Is it a good time because you don't want to make it a stressful experience, right? You want to keep it positive and fun and want to traumatize everyone involved?
Maureen [00:07:58] Yeah. Yeah, for sure.
Shawn [00:08:01] And can you talk about the general recommended approach to toileting and how that differs for children with ASD?
Ishanee [00:08:08] Sure. So usually, you know, you start off with getting your kid used to going to the bathroom, right? So you introduce them to the toilet or a potty. A lot of families will start off with potties as a transition. You take them to the bathroom, you get them used to it. And there's little readiness things that you can look for. Right. Like, does my child stay dry through a nap? Do they indicate in some way that they're uncomfortable when they wet their diaper or they try to take it off, or they're able to sit up straight or follow simple directions? We don't always see all of these readiness signs with the kids that we work with, kids on the spectrum. It doesn't mean that they're not ready. It just means they're not communicating it in the same way. Right. So we shouldn't be waiting to see all of those signs with our kids before we start. And then really, because of the challenges that we see with this population, it does require extra teaching, explicit strategies that we use. So we'd recommend, you know, just starting with setting up the environment. We really want our kids to feel safe and secure and supported, especially because we do see some challenges with even that sensory piece. One of the things that we can see is kids can feel a sense of insecurity when they're sitting up and like fear of falling. And I always think of it, too, I tell parents, you know, imagine somebody is taking you to this big well of water that's meant for someone three times your size, asking you to sit on the edge and then do something. I always say you're going to be so afraid of falling in, you're not really going to focus on your body. You're just going to be holding on for dear life.
Maureen [00:09:47] For fear.
Ishanee [00:09:48] Absolutely. So even just setting up that environment so that, you know, get yourself a little footstool and get yourself a little reducer seat, some kids may need even a bar to hold on to. And with that type of equipment, you're going to make sure that right off the bat they feel secure, they feel stable, and then they can actually focus on what they're doing rather than not falling or feeling afraid. Right. And then the other thing we say is to really make toileting part of your schedule. And for different families, different things can work. Right. So some families find it really helpful to just go on a timed schedule where they'll go every half an hour, every hour to go to the bathroom, try sit. And then just through that process, kids will learn. A lot of the time is what some families find helpful is to use kind of what we call an elimination schedule, which really is working with the kid and their body. The idea is that every half an hour or so, you take your kid to the bathroom and you're taking sorry, you're checking their diaper. And the idea is you're taking data. So for for three days, four days a week, you check the diaper and you note down, you know, at this half hour interval are they wet, are they dry? Is there, you know, urine or bowel? And based on this data, you can then do fancy math and take the hours that you've checked, divide by the number of wet. And really it helps you see when the kid is going. And then that's the time interval you would use to take your kid to the bathroom. So it's really individualized to the kid. And it can be really helpful because what we really want to do is we want to increase the chance of catching a success right? Because when we when we take them at the right times and then you have a success, you have a greater chance of reinforcing that success, which is another big strategy we talk about is reinforcement is how we learn. Right. And especially with kids with ASD reinforcement is a really helpful teaching strategy. And for all of us. Right. We follow that ABC's of behavior with the behavior is what you do, the A is what comes right before to make that behavior happen. And then the C is the consequence that happens right after. So I mean, like for me, I come to work and I get paid. That's the consequence. The reinforcement for that behavior and for kids when we're teaching them new skills, you want to reward the behavior that you want to see more of. So when you take them to the bathroom at the right time and you catch a success and you reinforce that you're increasing the likelihood that they'll have a success in the bathroom again. Right. So that's a big strategy we talk about is reinforcement and how to do that reinforcement, how to pick reinforcers, all of that. And then I think the other thing, too, is thinking about what your kid is wearing. And diapers are so wonderful because there's so absorptive and they make all of our lives so much easier. They're so convenient. However, the other they're almost too good at what they do. There's so absorptive that kids don't really get a sense that anything has even happened. And sometimes that can really take away from that natural reinforcement. Right. So we'll often suggest trying to eliminate diapers and instead wearing underwear, because what happens is when when your child goes, they feel that yuckiness or that wetness, and that sensation is really helpful for, oh, something has happened. Now I need to go to the bathroom. Right. And over time, that's kind of how that learning happens. And I totally appreciate that this creates a lot more mess. And so we also often say, you know, if it's easier for you wear the underwear underneath the diaper. Right. So you still have that catching the mess. But you also have the feeling, the sensation. And there's lots of like training panties available on the market too that families have found really helpful.
Shawn [00:13:40] These are some great tips.
Maureen [00:13:42] Yeah. Very good.
Shawn [00:13:44] So from previous episodes, we've learned that oftentimes parents need to rule out any medical issues or underlying conditions that might be attributing to some of the difficulties their children might be experiencing. Is it the same with respect to toileting?
Ishanee [00:13:59] Yeah, of course, it's such a good point, because we can do all of these strategies and at the end of the day, if there's a medical issue, we're probably not going to get anywhere. Right. So one of the big things we see is constipation. And we do see it a lot with kids, with the ASD. A lot of times there's feeding issues and diet and, and yeah, so that piece of it, we we definitely want a pediatrician involved if there is something like that. So constipation is a big one. And the other thing that we can see is bladder infection that can have an impact. Neurogenic bladder, which is kind of losing control of your bladder. So, yes, definitely you'd want to rule out those medical issues before you really work on toilet training as a skill.
Maureen [00:14:46] So is there anything that our parents should be looking for like if you're thinking about starting toileting or toilet training with your child, should they then just go to the doctor to ensure that everything's okay? Or are there certain things that they should be looking for? That might be red flags that they do need to go see the doctor before they start toilet training to ensure there are no medical issues?
Ishanee [00:15:13] That's a good question. I think some of the things come up at the checkups that pediatricians do at the developmental checkups. A lot of the times, you know, questions around how often is your child going? And you can kind of see that as a parent, right, when you're changing diapers and stuff. How often are they going? What does their stool look like? Does it look like it's really effortfulI and painful when they're going. If there's anything that maybe is unexpected. Right. So, I mean, I've had families that I've worked with who say, you know, their kid was four, almost five years old and had never had a bowel movement while they were awake, only when asleep. And if there's things like that that maybe are unusual, definitely that would be a cue to talk to your pediatrician.
Maureen [00:16:01] So usually these things are picked up in the general checkups then?
Ishanee [00:16:04] Typically. Yeah. If it looks like your kid is having a lot of trouble and again, there's that discomfort or pain that you wouldn't necessarily expect, then definitely.
Shawn [00:16:13] OK. And is there a specific age when you recommend parents start toilet training their child?
Ishanee [00:16:21] That's the question that comes up a lot. And it's a little bit hard to answer. Every child is so different and unique and I think it depends on so many factors that really kind of the best practices, if you're seeing some of those readiness signs, if you as a family are ready, if you're motivated, try and and then, you know, if it looks like it's not going anywhere, then take a break and try again later. And I don't unfortunately, I don't have a magic number, but that's typically seems to be the way it goes.
Maureen [00:16:54] Is this such a thing as too early to try?
Ishanee [00:16:58] I think yeah, I think there can be, cause what you don't really want is when your kid is really not developmentally ready and you try to push it on them, you don't want to create almost a fear of the bathroom and you don't want to create almost a traumatic experience, and then your kid is later resistant to the bathroom. Right. So I think there can be, which is a really good point, too.
Maureen [00:17:19] Because I feel like there's bit of a fine line isn't there in terms of toilet training? Because you hear some parents talk about how it could be quite traumatizing for their child. So, you know, and yet other times you have to be quite persistent with it. It's it's a real fine line to travel down.
Ishanee [00:17:38] Absolutely. Makes it so hard to talk about, too. Right. I wish there was such an easy answer like, yes, do this and you'll be fine. But unfortunately, that's not how it works.
Maureen [00:17:49] Yeah, for sure. We know that children with ASD often have the sensory sensitivities that you were referring to earlier. And often these can interfere with their abilities to do daily activities that many of us take for granted. So can you talk a little bit more about some of the sensory sensitivities or behaviors that you see in these children and how it affects their toilet training?
Ishanee [00:18:11] Sure. So the bathroom, if you think about it, is a very different environment than anything else your child might be used to. So thinking about, you know, different stimuli that are in the bathroom. So a lot of kids can be very sensitive to touch. Right. So even something as simple as going into the bathroom, sometimes the floor is a lot colder because the tiles can be colder. Right. So some some kids that I've worked with find it really helpful to wear socks and then they go to the bathroom or even house slippers or something. And the other tactile thing that can come up is the toilet seat. It can be cold and hard, and so some families have had great success with using padded seats or different types of things you can get to work on that. Right. Some kids find it helpful even to just put toilet paper on there and then they're able to sit on it, no problem. So it's a little bit of trial and error. The other thing that comes up a lot is with kids who have sensitivity to sounds, the sound of the flush is a really big one. Right. Different strategies you can use, but it can be something that they respond very strongly to, to the point that they may actually refuse to go to the bathroom because they know that that's what's coming. Right. And you see it a lot in public bathrooms with the sound of the hand dryer too, a lot of kids will avoid that. So different things can work there again. I think one thing is to one thing that kids find really helpful is to know what to expect. Right. So if even if even something as simple as, OK, we're going to flush the toilet now, let's count down, and that count down so they know when exactly it's going to happen can be helpful. For some kids, a more gradual exposure approach is helpful. So maybe OK you do everything in the bathroom and then when it's time to flush, you can wait outside the bathroom, I'll flush. And then gradually you would work on, oK, now you stand in the doorway, now you come a little closer, now let's do it together. Right. And for some kids, just like playing music helps to kind of balance that out a little bit, too.
Maureen [00:20:11] So great. Some really good tips, though. Yeah. Routine's also such an important component of children's daily activities. And we often hear from parents that these routines offer a sense of comfort to their kids. So what tips do you have for parents to help their child manage the changes that toilet training can impose on their routines and their daily lives?
Ishanee [00:20:34] That's a great question. Yeah, I think a lot of our kids do really well with comfortable, predictable routines. Right. So so, again, when we think about kind of the timing of toilet training, sometimes it can be it's really helpful to incorporate it as part of your morning getting ready routine when you're coming home from school routine like these different building it into your daily routines is really helpful. So it's a part of that routine. And it's not just a change suddenly that you're imposing right, and the other part of it, too, is when we think about these changes, a lot of times parents will ask, should I use a potty or should I go straight to the toilet? And it's not really an issue that comes up, typically; however, with a lot of kids that we work with, if they already have a really hard time with transitions, that potty can be an extra transition that makes it really challenging to then transition again to the toilet. You've put all this hard work into toilet training on the potty and now you have to do it all over for the toilet. So for some of our kids, we recommend just don't use the potty at all. Just go straight to the toilet because that extra transition right.
Maureen [00:21:39] Skip that one step.
Ishanee [00:21:41] Yeah, exactly. And speaking of transitions, that's the other part that can be helpful for the self-regulation piece, too, is for a lot of our kids, transitions during the day can be tricky. So using something as simple as a little transition object or a transition song and then using that to transition to the bathroom can make that a little bit easier in their day to day.
Maureen [00:22:02] So how do you use a transition object? Describe that. What does it look like?
Ishanee [00:22:06] Sure. So it can be, you know, if your kid is playing and doing something and and then they don't want to leave what they're doing to go to the bathroom, understandably, what they're doing is way more fun, using that transition object so you just give it to them and they take that object to the bathroom. So you're using it as a transition between one environment to the other, but that object is staying consistent. And so it just helps. Right. So put down what you're doing with this toy, take this other toy, and a lot of times what's really helpful and we use this a lot in therapy groups when we're transitioning to is pop tubes, they're the little fun, noisy tubes. Right. So it's OK in time to go to the bathroom. And you want to tell you don't really want to ask because you don't wanna open it up for no as an answer.
Maureen [00:22:46] There is no negotiation.
Ishanee [00:22:49] This is what we're doing. And then you take your transition object, a.
[00:22:52] Nd then with that object, you can kind of play with it as you walk to the bathroom. And it just helps make that transition a little smoother. Yeah.
Maureen [00:22:59] That's a great idea.
Shawn [00:23:01] So prior to today's recording, you're talking about the importance of consistency in toilet training. And also, you discussed today a little bit about parent readiness. What do these terms mean exactly? And how are they related?
Ishanee [00:23:16] So consistency is, I think, really important when we're teaching skills in general. But yeah, for toilet training, it's a really important factor to consider and consistency between caregivers, between different environments. So if you are doing toilet training, you know, it's totally fine to just pick one environment. So I'm only going to toilet train at home or only at daycare. However, if you are going to, if you have the capacity and everyone's on board to use multiple environments, then it's really important to have consistency between those two environments. Right. Because otherwise, that teaching is going to get very confusing if you're doing one thing in one place, one thing and another. So you want that consistency between environments and then even within a home for different caregivers to be using the same approach is really important because you want to really teach that skill and make sure your child knows this is what we're doing, this is the expectation kind of, you know, using reinforcers the same way, and that can play a big part in that. And then parent readiness really just making sure that this is a good time to be toilet training. And we have the resources, we have the time. It can be time intensive. It can be resource intensive. It takes a lot of energy. It can be exhausting. So making sure you have all of those resources. And again, like if there are going to be multiple people, people involved, then do they all have that capacity and are they able to engage in the process? And I guess that's how they're kind of connected too. Right.
Maureen [00:24:46] Which leads to the next question we were going to ask. How do you ensure the consistency then if you have done the toilet training successfully, even at home, and then your child starts school or they're in daycare and it's very difficult to co-ordinate and maintain that consistency. What suggestions do you have for parents?
Ishanee [00:25:07] Yeah, it's a good question. It can be a very challenging right because there's so many different pieces involved there. I think one thing to remember is what are the strategies you used in that environment that were helpful and then really having a strong communication plan to bring that over to the new environment. So we talked about how language can be a challenge for some of our kids. So what is the language you used and then staying consistent. If one person is using potty, if one person is using toilet, it's going to get confusing. Right. So we want to use the same consistent language, make sure it is simple enough to be to be at the child's level. And then one thing that we haven't talked about yet is using visual schedules, which is another strategy we often recommend because visual schedules are so helpful to help our kids visualize the steps of the task, to really communicate clearly those expectations, and to help them see what's coming next. So if you do have a visual schedule at home, then using that same one at school or at daycare can be really helpful, another way to ensure that consistency. Right. And so all the strategies that you're using at home really communicating those and if possible, using the same materials and things that you're using in the other environment, too, can be helpful.
Maureen [00:26:26] Yeah, that makes sense. And what about the actual physical environment for the child, like changing from using the toilet at home to using a toilet, even in a public restroom or at school? Is that an issue for a lot of our children?
Ishanee [00:26:41] It can be for some. I think the idea is that when you get used to it more and more, it becomes a little bit easier. But sometimes we do say that when you are toilet training, do expose your kids to other bathrooms. Right? If you're visiting grandma, take a bathroom trip. If you're out and sometimes the public bathrooms can be trickier again because there's so much more stimulation, and for kids who are very sensitive to different stimuli, it can be harder. But definitely exposing them to different environments is, can be helpful. And again, if there is a lot of difficulty then thinking about what is it about those environments that's challenging and seeing if we can do some problem-solving. Right. So for public bathrooms, some kids will find noise. canceling headphones or ear defenders really helpful because if it's the sound, then how can we work on that?
Maureen [00:27:29] I have another question that's going to sound probably odd, but do children have to be toilet trained before they can attend school?
Ishanee [00:27:36] I'm so glad you asked that question. It comes up all the time and I think there's a little bit of misinformation about that out there. They don't, a lot of parents think that they do need to be. And honestly, it does make life a lot easier when they are, and I totally can appreciate that from both sides. Right. From the school's and the parent's side. It does make life a lot easier. However, they don't have to be. And actually what we find is a lot of times they have success when they get to school, and if they're working on toilet training in that environment and the right resources are in place for them, then that can be a good environment to continue working on those skills, too.
Maureen [00:28:13] Because I have heard some parents come back and say, no, my child can't go to school because they've not been toilet trained.
Ishanee [00:28:20] Absolutely. We've seen that, too.
Maureen [00:28:22] And that's not the case.
Ishanee [00:28:25] Mmmm-mmm.
Maureen [00:28:25] Good to know.
Ishanee [00:28:26] If that's the only reason and you think they can't go because of that, then no, I would say have a conversation with the school. And definitely you need to have a good communication plan in place and you may have to send extra clothes and whatnot to the school depending on what the plan is and if they're going to be working on that there. But it shouldn't be a reason that they can't go.
Maureen [00:28:46] Thank you.
Shawn [00:28:49] And so really, you're talking about the importance of communication and visual schedules. But what are some specific strategies you can suggest for parents of children who aren't yet speaking and therefore can't communicate that they need a diaper change or when they need to go to the washroom? Are there any other strategies?
Ishanee [00:29:08] Yes. So definitely, you know, language is such a big thing in our everyday life, and we use language to do a lot of our teaching and communication in general. But again, it shouldn't be a barrier to toilet training. Just because your child isn't speaking doesn't mean we can't do toilet training. Different strategies you can use, a lot of families you know, will use pictures. So picture cards can be really helpful. A card that just has a picture of a bathroom on it or a toilet on it. And then that's your way of indicating OK, we're going to the toilet. The other thing is using very consistent, simple language to communicate what you're saying. And then again, everybody involved should be using that same language. And then signs and symbols are another good one. Right. So using a sign to indicate the bathroom is another way of doing not. The visual schedules, like you mentioned, definitely are helpful as well, especially we were talking earlier about the importance of incorporating it into your daily routines. If that toilet picture is incorporated into that visual schedule, then that's another way of communicating that that's what we're going to be doing.
Shawn [00:30:09] And so is the goal to have the child get the symbol to the adult to indicate that they have to go? Or is it more to help with the transition, or both?
Ishanee [00:30:20] I think it depends on what stage of the training you're at, right. So initially, it's probably going to be adult driven because even with any kid initially, it's going to be us initiating and saying, OK, it's time to go to the bathroom. Over time, you can work on teaching the child to initiate to ask for that. Right. But initiation sometimes doesn't come until later anyway. And it's a really good point because a lot of times as parents, parents get very used to reading their kids and anticipating their needs. Right. So you can kind of read your child and they do a little pee dance or if they hold their diaper or they even, you know, look a little uncomfortable they get a little look on their face and you know that that's usually what they do right before they go, that's a great time to then take the card and if that's what you're using, then hand it to them and say, OK, we're going to the bathroom and then go. And over time, the hope is that by doing that over and over again, then eventually the child will learn that that's how they initiate.
Shawn [00:31:18] And do you have as part of your workshop, do you have any symbols or visual schedules that would be available for parents that we could put on our Web site?
Ishanee [00:31:28] Yeah, absolutely.
Shawn [00:31:29] Or any handouts or anything useful?
Ishanee [00:31:31] Yeah. Yeah. Autism Treatment Network has some great resources that they've put together. And we also can link to some of the visual schedules that we provide to families for sure.
Maureen [00:31:41] That's great. Yeah, we'll put them on the Web site. Okay. You talked a little bit about self-regulation, so we kind of wanted to go back there again. What does self-regulation mean with respect to toileting?
Ishanee [00:31:54] There's so much that goes into regulating ourselves, right? Self-regulation is really how you respond to things that come up in daily life. And it's so easy for some of our kids to become dysregulated depending on the factors in the environment and what's happening. And a lot of things that we've talked about can play a big role in that. Right. So that self-regulation is so key because you want your child to be calm and alert and ready to engage and learn, because if they're not, then we're not really going to get anywhere with learning. And a big part of that is co-regulation because a lot of our little ones need help with that self-regulation, they haven't quite developed it yet. So as a caregiver, being calm and patient yourself can be a big part of it, too, right? Because if you're anxious and upset and frantic and getting ready and rushing and kids will really pick up on that and it may not be very helpful in that moment, but little things. Right. So supporting successful facilitating smooth transitions that can help with that self-regulation piece. And then some of our kids, you know, just getting into the bathroom is so challenging, but really thinking about what is that challenge? Is it a sensory component? Is it a fear and kind of problem solving around that to help, you know do we need calming strategies? Do we need to have a drink of water or sing a song or anything to really make that, to work on that self-regulation piece. Then the other thing we talk about quite often is a lot of our kids have a hard time sitting on the toilet. Right. And so sometimes the initial goal is just getting to the toilet. And then the next little goal can be we sit on the toilet for 10 seconds. And for some kids even, that's a really big deal. Right. So what are some strategies that we can use to encourage that? So maybe, you know, the attention isn't great. So sitting on the toilet, doing nothing for even 10 seconds is really hard for some kids. So maybe we introduce some quiet preferred activities that they can do while they're sitting to encourage that sitting. So a lot of kids will look through books or blow some bubbles or just do a quiet activity. Not too stimulating because I don't want them to be so involved in it and wrapped up in it that they forget to pay attention to their body. But something that will help them sit right and achieve that goal and still be calm and ready to learn.
Shawn [00:34:12] So are like screens maybe not the best choice to use on the toilet?
Ishanee [00:34:19] Again, I think it depends on the child and it depends on their response to the screen. Right. And if it's going to be something that's then going to be really challenging to transition them away from, then I wouldn't recommend that either. If they get so wrapped up in it or if then you can't take it away, then it may not be the best. But I know families do use it quite successfully too I think it really just depends on the child's response.
Shawn [00:34:40] So you want it to be something where they can still they're not totally zoned out they're still able to pay attention to what's happening?
Ishanee [00:34:48] And I think, like one thing that comes up a lot with some of the kids we work with is their introception, which is their sense of, you know, how do we read our body cues and respond to them? And a lot of times we see with kids with ASD that there's sense of introception is poor. So they can't actually tell when they feel hungry. They don't know when they need to go to the bathroom as easily as others might. So I don't really want to take away from that even more by providing something for them to pay attention to that's yeah, that's going to be a distraction from that.
Maureen [00:35:23] There's also a lot of toileting books out there too, like that I've heard parents use and so is that a good opportunity to have a special book that the child reads on the toilet about toileting? Is that a good strategy or a helpful thing to do?
Ishanee [00:35:42] Absolutely, yeah. I think using books about toileting is a great way, even before you start toilet training can be great because again, you're preparing the child. And when we think about the kids, we work with preparing them for anything that's coming up as so helpful for them. Right. It's a great way for them to learn what the expectations are, what they're going to be doing, and helping them see it in a different context helps to normalize it too. Right. So they see in the book the child or the animal or whoever is doing that that's what I'm going to be doing. And on that note, I think the other great thing to do is that teaching strategy and other teaching strategy could be modeling yourself as a caregiver. So if your child sees you doing it, then again, they're learning through observation. There are also are a lot of great videos and social stories available that you can use, which is another really good teaching tool. And there's good research showing that with a behavioral approach, when you combine that with use of videos and social stories, it's actually really effective for toilet training. And there's so many available now on the Internet. And you can YouTube, you know, social story Pirate Pete, and there is a whole thing where kids can watch and learn, and that's great.
Maureen [00:36:53] Oh, that's great. All right.
Shawn [00:36:57] Are there any differences in toilet training across genders? For boys and girls, do you see any differences?
Ishanee [00:37:06] I think sometimes we can see that boys are a little bit later to toilet train than girls and especially we see it with nighttime training is a lot of times kids in general won't really nighttime train until five, six, seven, and that's fine. But with that, too, you see boys can be a little bit later.
Maureen [00:37:26] Is there anything else you think parents need to know with respect to toileting?
Ishanee [00:37:33] Maybe I'll talk a little bit more about something that we touched on earlier, which is that reinforcement peice. And I think you know, it isn't really intuitive how it might relate to toilet training. So we do spend some time talking about it in our sessions. So maybe touch on a few concepts there. So we talked about reinforcement as a teaching strategy and using it to teach. So you want to see a behavior, you use reinforcement, encourage more of it. So how that kind of looks in practice is your you know, for kids, the if your initial goal is sitting on the toilet, then even for sitting on the toilet, you want to provide lots of praise, so reinforcement can just be verbal. Right. So you can do a lot of verbal praising. You can really celebrate, clap. That's reinforcement. And you're teaching your kid that that's these are good job and they're more likely to do it again. In terms of tangible reinforcers we also talk about that a lot is what is a good reinforcer. And it really should be something that's going to be very motivating to the child. So I often say, you know, let's make a list of things your kid likes, you know, even their favorite TV shows or their favorite animals, list of things that they like and thinking about how we can incorporate that into a reinforcer. Right. And it doesn't have to be the one toy that they get all the time. It can be a variety. And oftentimes a lot of our kids really benefit from that novelty and variety. So some families will have a little box that they create, which is their rewards box for toileting, and they have different things in there, and every time their kid is successful, they get to choose from that box, which is really helpful for that, again, variety piece. Right. And the reinforcer should be provided immediately after. Because otherwise it's not as effective immediately after. And the other key thing about the reinforcer is you want it to be something that's available exclusively for toilet training. If they have access to it at any other time, then they're not really going to be motivated to do the toileting to get it, right. And again, with reinforcement, parents always ask well I don't really want to give my kid a smartie every time they go to the bathroom, I just have to keep buying Smarties forever. And that's such a good point. But the idea of reinforcement is we're using it as a teaching tool. And so gradually, over time, we do want to fade it. Right. So you're using it a lot initially, as your kid gets more and more successful, you want to fade it back more and more. So initially you may use that smartie or whatever you're using every time your kid is sitting on the toilet. Over time when they're getting good at sitting, you can use it every other time and then every third time. And then you as you change the goals, you may have to play around with that reinforcement schedule again. So now if we're reinforcing for success on the toilet, then again, you may have to use it more regularly again and then again work on that process of fading it back.
Maureen [00:40:19] So it's really baby steps, isn't it? In terms of what you're reinforcing like one behavior at a time?
Ishanee [00:40:27] Totally. I think it's a different way of thinking because in our heads, as adults, we think of toilet training as one step in the day, whereas for our little ones, we really should be breaking it down into very small steps. Like you said.
Maureen [00:40:42] Yeah. Would have thought something so simple can just be so complex. Right. Okay. Well, thank you so much Ishanee for giving us the time, and you've given us so many tips and techniques, I think it's going to be very valuable for a lot of our parents. Thanks for joining us today.
Ishanee [00:40:59] Thank you it was my pleasure. Thanks for having me.
Dr Heidi [00:41:06] If you've listened to this episode and have comments or ideas that you'd like to share with us regarding future episodes or what you heard today, feel free to e-mail us at ASDengage@hollandbloorview.ca
Autism Speaks and Autism Response Team (ART)
Dr. Heidi [00:00:11] Welcome to ASD Engage, a podcast for families of children who are currently waiting for an autism spectrum disorder or ASD assessment. I'm Dr. Heidi Kiffer, a clinical child and adolescent psychologist.
Maureen [00:00:24] I'm Maureen Mosleh, a psychometrist.
Shawn [00:00:27] And I'm Shawn Brumby, also a psychometrist. We work on teams that assess children for ASD at Holland Bloorview Kids Rehabilitation Hospital. Each episode we will present a topic that reflects concerns brought forward by families we work with.
Dr. Heidi [00:01:00] Welcome to the ASD Engage podcast. In our previous episodes, we've been talking about several topics that people often associate with ASD, including sensory seeking behaviors, aversions, feeding and eating difficulties and sleeping problems. In this episode, we focus on a topic or issue that is less focused on, that of physical activity. We're joined today by Patrick Chikara. Patrick completed his doctoral research at Holland Bloorview, and his research examines how to enhance the mental and physical health, along with participation and inclusion among individuals with autism through physical activity, participation. In the community patrick is the founder and former director of two community recreation programs for people with autism and his community involvement has been recognized by the University of Toronto Awards of Excellence. So, Patrick, welcome to the podcast and thanks so much for making the time to join us for this episode.
Patrick [00:02:00] Thank you for having me.
Dr. Heidi [00:02:03] So, Patrick, you've been involved in some fascinating research and intervention related to physical activity for children and youth on the spectrum, which we're definitely going to get into in this episode. But first of all, how did you initially become interested in and get involved with the ASD population?
Patrick [00:02:20] It goes back several years. You would never imagine as a 16 year old that you would start your career thinking about what would pique your interest. And I used to work at an overnight camp and when we had lots of children with undiagnosed behavioral issues who had come to our camp and were quote unquote, challenging kids for lack of better terminology at the time. But it turned out that some of the kids that we had also had autism spectrum disorder. And this was about 15 years ago where autism research was still kind of building in its infancy. And I was just so interested in working with one of the young boys because everyone labeled him as a challenging kid and no one understood him and because he was sitting on his own all the time. And to me, I was, there was more to that story that I didn't always understand. And there was one day we were just sitting out in the field and he was just gazing at the clouds. And I remember just going and laying down beside him and just trying to understand his daily life. And from that point on, after figuring out a bit more about his life and the diagnostic situation, that's what really started to pique my interest to then start working with people with autism. So I then worked as a one on one support worker doing mainly recreational based things in the summer outside of the summer. So think about summer camp thinking about skating and baseball. And then I was able to turn that somehow into a job. So that's probably the most rewarding part of this process is kind of taking my interest in both physical activity and health and autism spectrum disorder and then doing a Ph.D. in that area.
Dr. Heidi [00:03:54] Yeah, and so you have 15 years ago, like a lot has happened since that time, and especially in our understanding of ASD. So subsequently you completed your undergrad degree and then got into graduate studies, as you mentioned, with a period of time spent in connection to Holland Bloorview so can you tell us a little bit about that?
Patrick [00:04:15] Yeah. So my Masters was not autism related, but my PhD at Holland Bloorview was so at Holland Bloorview I had the chance to, first we ran a provincial wide survey to look at the rates and habits and patterns of kids with autism and the physical productivity participation. And to date, no one's done that in Canada. And we were the first ones, which is both kind of exciting and also in a way, not surprising that we found that the rates were much lower than their age related peers. And that is pretty consistent with what we see around the world, that kids and youth and even adults with autism are less likely to be active than their age related peers. So that was kind of part one of the study. Then part two is what I say is the best part of my job. I got to work with kids and we got to create videos and have interviews together throughout the process. So we spent about 20 hours with each participant and in 20 hours you get to really get to know someone pretty good. And if they don't like you, then that's a different story. But in general, the youth who participated created a digital story which is similar to a YouTube video. And in that digital story they talked about what are some of the things that draw them into physical activity? What are some of those things that maybe push them away? What are some of the things that they like or don't like? And what are some of the things that we can do better in the field in terms of research, in terms of teaching in schools, in terms of clinical practice, on how to engage children in youth with autism in physical activity? So we did both the digital stories and the interviews. We got to hang out for a while. And this is again, my favorite part of my job is I like to hang out with kids and do research and and learn from them more than anything. Throughout that PhD I learned much more from the participants and the families than you can learn in a textbook, honestly, just by spending time with people and families. That's much more enlightening than just reading basic information that you get.
Dr. Heidi [00:06:00] Yeah, yeah. And it seems like such an interesting study to hear the way you did it in terms of having those digital stories and really involving the kids themselves.
Patrick [00:06:09] Yeah. And it turned out we were really hesitant. No one's done digital storytelling with people with autism at that time, especially physical activity. So I was really hesitant. But at the same time, it turned out to be so rewarding. And one of the things that we don't focus on sometimes is the strengths of kids with autism. And one of my takeaways and my goals of using the digital stories is if I can get a child to maybe be interested in digital videos or to learn how to video, edit or to participate, then that was one of my takeaways that I wanted the youth to have. And then secondly, some of the youth were so engaged that we had three sessions. Some youth were done in the first two sessions and then the third session I had to figure out what it was going to do for them just to keep them busy, but to see the progress of some of the participants who were really apprehensive. I remember I was so nervous, quote unquote. We had a runner, so to speak. And I remember the very first day he came in to the session and he had his jacket on, his sitting by the door. And here I'm thinking, panicking, being like he's going to run. And then by the end of it, he was crying because he didn't want to leave that social interaction that we had as a group for three weeks. Right. So it was more than just doing research and it's more than just, you know, creating a story. It was really building on strengths, providing an opportunity that they might not otherwise get sometimes and at the same time rewarding them for their contributions. And I think that was the most valuable aspect. And to this day, sometimes I'll get an email from participants like, hey, what's up, what's going on. And so to have that followed three years later, because we did it in 2017, is valuable. And the connections you make with families and children with autism are real genuine. And I think that's also an important part that doesn't always get translated in research.
Dr. Heidi [00:07:50] Yeah, yeah. That sounds amazing. Also sounds like the seeds for a follow up study too.
Patrick [00:07:56] Have potentially one day.
Dr. Heidi [00:07:58] So Patrick, can you tell us some of the key points of what is generally known about the physical activity of children in youth with ASD?
Patrick [00:08:06] So it's an area that's growing, about 10 years ago no one was talking about it. No one really thought that this was important for whatever reason. And then there was like a landmark study in early 2010 that said that people with autism are less likely to be active, especially children and youth and the peak decline ages between 12 and 14, so as kids are aging kind of that transition age into youth, that's when we see the biggest drop off. And so one of the biggest questions was like, why is this happening? One, why aren't they active? And two, why is the drop off there? And so some of the things that get lost in that is potentially the importance of being physically active. Right. So we know that being active for kids generally and for kids with autism specifically, you know, there are improvements sometimes in social communication skills in creating structure and routine, creating a pattern and positive habits, creating a positive sense of self when it works well, but also there's health benefits to it. So we have increases in kind of cardiovascular health, increased chance of diabetes. Then we also have the social components. And a lot of parents that I've talked to in a separate study where we interviewed parents on what it's like to have a kid active or not. And the parents say the social piece is the number one driving force for parents to put them into activities. So we have all these benefits, but yet our kids are not participating. And so to me, the question is always like why or why not? What is happening? What is going wrong? And so there's a few different pieces that are in this situation that are somewhat complicated. So for some kids, you have kind of motor decrements. So challenges with running, hopping, jumping, that might be impacting kids both in the community and in the school setting, because if their coaches or instructors are leading an activity and they're not keeping up in a way that is conducive to their ability, we know that, generally speaking, someone is going to probably drop out for that reason. Then we have the sensory piece. And I know we just had Moira Penna a few weeks ago talking about all the sensory information processing. This really aligns nicely because physical activity is so stimulating and it can be overly stimulating for some people. Right? You have sweat. You have people potentially touching you. You have noise. You have a game with rules and structure and all those pieces, when you put them together again, if in not the right environment can be overwhelming and can contribute to either sensory overload or a meltdown and a challenge. Then we have the kind of behavioral aspects of physical activity that can be challenging. Right. So we might have a kid who has a hard time following rules or instructions or structure if it's not there. And so you put all that together and it makes it a lot more complicated for a child with autism to participate. If those right supports and routines are not in place, then you factor in all the challenges parents have, sometimes with a child with autism. So especially early years in my PhD, we found that parents weren't necessarily not putting their kids to be physically active on purpose because they're chasing 100 other things in their day, getting their kid out the door to school, getting their kid back home from school, then potentially having therapy appointments and then trying to engage in other sorts of arts and based activities or sometimes just getting through the day. And as much as people sometimes think, well, like we got to do more for parents and the parents aren't doing enough. I found in my research that actually it's the opposite. The parents are so overwhelmed and burdened and stressed that to throw another thing at them in terms of physical activity and just say they should do it and blaming them I don't think is responsible. So you put the biological things together. You put the sensory things, the behavioral things and the social components. And again, in the right context, it works. And for some it doesn't work. And so it is complicated. But from some of the work we're trying to do now, we're trying to find ways that work for parents and kids specifically on how to engage their activity.
Dr. Heidi [00:12:03] Yeah, I think that's so important, especially that last point with respect to parents, because we have a social work episode coming up where the social workers talk about kind of post diagnosis, meeting with the families and helping parents decide what are their priorities, because it is almost impossible to try to do everything that you want or you feel needs to be done. So sometimes maybe physical activity gets kind of put down further on that list, right?
Patrick [00:12:29] Yeah. So that's not a knock at the parents at all. In fact, I'm a parent supporter from the beginning until the end. I think, you know, sometimes the parents fall through the cracks with our kids in the health care system. And that's not a fault of the parents necessarily. But our goal is to try and support them. And I think it's irresponsible to throw more things at parents without providing the adequate support. Right. So it's one thing to say, yes, kids should be more active, but there aren't pathways that support activity both in schools or in the community or on the parent's own time, then I don't think necessarily that it's going to work. And like you said, you know, parents have so much stuff to do. And if it's on lower, lower end of the kind of spectrum of priority, then and that's OK. We don't take that personally. But our research is showing that it has a lot of benefits like we've talked about, especially for social communication and behaviors, which in the lab have shown promising results. We're still trying to figure out how that will translate into the real world. But we have seen kind of increases in communication skills and in reading skills and in behavior and management of emotions and skills. So, again, it's exciting that we have all this lab stuff. And now the question for parents is what I do with this? What how are you going to put this into my life? And so I said, we've got to wait. We're trying to figure that out. Right. But it's a long it's a long winded process, both the research aspect and again, trying to implement it into parents lives.
Dr. Heidi [00:13:51] Yeah. And I think you've kind of touched on this a bit. So you mentioned that those on the spectrum have been found to be underactive and that's across the globe. So it's kind of like a universal issue. Is there a sense of like why that might be the case? You were alluding to it with several reasons. And are there some ways in which maybe the research oversimplifies the issue?
Patrick [00:14:13] Yeah, absolutely. I think. Part of the things that I've learned from my PhD and working with parents throughout 15 years, being in the field when I was a little teenager to now doing research and work in the field is I think the social components of of activity are really tough for our kids and historically physical activity, physical education and sport are pretty rigid. So they have a model that we want to fit people into this mold. Right. So it's like kids are supposed to be able to be quiet and focus and listen and do the skill and run and jump and throw. And it's very top down. Right. So the teacher is the expert and the child is just supposed to automatically pick up on these things. And if we look at outside of kids with autism, a lot of kids actually also don't fit that mold very well. And that mold comes from the 1920s and the military days of very kind of militaristic instruction. And part of the global focus is to try and move away from that sort of Top-Down coaching piece. And what I would say is like good teaching practice for all kids benefits good teaching practice for kids with autism as well. All right. So if we can find ways of teaching and instruction and games, then if that works for kids with autism, it will work for all kids really well. So to just assume that you can put a kid in a class or an activity and just say based on these rules that this is how we do it without thinking through what are the consequences or how do we modify or how do we adapt or how do we build a game that takes all these things at the outset together that actually makes it successful for the child with autism, then that I think is a way forward. And again, that that social peace and the expectations and pressures for parents to try and engage and fit them into that mold, I mean, it doesn't work. And we think about it. Someone usually asked me, look, I want to run a marathon. I'm like, well, the first thing you're going to do is not run the marathon because you can't run 42 km without training. Right. So if we put a child with autism in a social setting that's physical, that has all those components that we talked about, the sensory pieces, the behavioral pieces, and we don't provide the adequate support, I mean, we're automatically setting them up for failure, right? Right. And so my kind of motto is to try and set up kids for success. And the way we could do that, in my view, is to one, either modify the rules and games and the way we teach activity or two to develop games that keep their activities and their abilities in mind from the outset. Right. So rather than try to fit them into the mold, we want the mold to actually represent them, which I know is what Holland Bloorivew is trying to do in terms of their clinical approach. And I'm hoping that that somewhat will translate to physical activity. But we're not there yet.
Dr. Heidi [00:16:47] Yeah, well, it makes me think. I know. I mean, in terms of school, there's there's been a big shift in terms of like really accommodating kids and modifying and even like thinking about kids who might be overactive or have periods of inattention. Right. There's there's lots of things that you can incorporate into the classroom environment and also helping teachers to understand, like, oh, when when this child is fidgeting or doing something else, they're still actually listening. And when you're when you're putting kind of the onus on them to sit and be quiet, then their attention gets focused on sit and be quiet. And they can't also at the same time be learning what you're expecting them to learn. Right. But that's the school environment. And I'm sure it's a little bit harder to get kind of like professionals from different kind of like organized sports and physical activities to also kind of get that kind of understanding and awareness, too.
Patrick [00:17:41] Absolutely. And so there's a great organization in British Columbia called the Canucks Autism Network. They're sponsored by the Vancouver Canucks. There's a family connection there. And they've been real pioneers in Canada trying to increase awareness among coaches. They've run free workshops here in Toronto two summers ago. They're also running free workshops for parents. There's tons of resources. So I encourage parents listening, if you want to check out the Canucks Autism Network, there's a tips page for parents and there's strategies, but also ways to engage your child in activity, even simple things as how do we kind of look for programs. And so that's a great place to start. And the second piece is, again, the coaching and the engagement piece. We have teachers who I generally will always say want to do well for the kids. But when we're still using things developed by the teaching practice of getting the child to sit down and be quiet in his chair and their chair and our expectations that they're going to learn while we're kind of talking at them, I mean, we know that doesn't work for most kids, let alone a child on the spectrum. So I think it's for lack of a better we're trying to modify our teaching practices and modernizing it to reflect your kids. And and again, we know that 20 minutes of activity even throughout the day for the parents to remember, the Ontario Education Board put in the daily physical activity program years ago, and that kind has fallen off the radar. And that was based on research saying that if you give kids 20 minutes throughout the day in a classroom that stimulates their kind of the thinking and their brain, but also gives them a kind of a release and that has kind of fallen by the wayside all these years. I think it's happened in 2005. I mean, that just kind of no one talks about it anymore, right? So, yeah, it's trying to bring movement back is my motto. And I think sometimes we overcomplicate things both in school and outside of school. Sometimes movement could be like like we just talked about getting the child to stand up and move and fidget and come back. Right. To have them sit there the entire time and focus I don't think is realistic for most adults, let alone children. So I think it's trying to reimagine and reframe what our expectations are and then tailor in that to the kids needs and abilities.
Dr. Heidi [00:19:45] Yeah, yeah. Thanks for sharing that resource too. When we talked before this interview, you mentioned that ASD kids often go through a revolving door of physical activities. Can you speak about what you meant by that?
Patrick [00:19:59] Yeah, absolutely. And it's one of those things that we're not proud of whenever there's a revolving door it's not usually a good thing. And it's similar to what we see in other programs like kids with on the spectrum or will engage in. So lots of kids will maybe start an activity and within the first week or two they drop out. And in my research especially that we did, working with kids with digital stories and the interviews, I think 8 of the ten participants were part of that revolving door. They would try and do something new and then something would come up. Either the instructor wasn't able to adapt or they didn't have the resources because a few participants who were kicked out of programs because the options were either find a support worker or you can't participate. And this is happening like, you know, only a few years ago. And so.
Dr. Heidi [00:20:45] And the onus wass on the parents.
Patrick [00:20:47] It was on the parents. Yeah, right. And one, you know that families might not have the resources to find a personal support worker or two for the families who can participate and have a parent or sibling or a volunteer. I mean, that's another kind of barrier that we put up for kids to be active. Right. And so kids often start and stop and start. And what I noticed in our research was that kids didn't really have any continuous physical activity throughout their childhood years, and even into their teenage years, and one of the things that we've learned in general among kids, kids who are active, lifelong, generally have some sort of continuity throughout their life. So it might start, let's say, soccer when they were kids, but then throughout their adolescence and adulthood, they pick up new activities. But generally they're active. For kids who have to stop and starts, don't have a really good time to pick up a period of interest or a pique in sort of an activity. Those are the kids who are falling off by the wayside. And so the revolving door is problematic because as much as we were trying to get kids and put them into the mold, the mold isn't working. When we have barriers and policies that say, well, if you don't have a support worker because your needs don't fit this mold, you can't participate. Right. And so, again, I think it's trying to rethink how we support kids with autism on this and in physical activity, but also finding and retuning the mold that fits their needs and abilities and strengths more than anything,.
Dr. Heidi [00:22:07] Especially when it's affecting so many kids, eight or 10 times is what you mentioned before. It's a lot.
Patrick [00:22:13] And it was shocking to even hear that, like, again, we didn't capture that in the surveys because the surveys can only tell you so much. But it was really an eye opener to think about. You know, why is this happening? And then there's all those other things that are happening in the context. Right. And so one of the big findings and we just published actually a paper a few weeks ago in the journal Autism. And one of the hardest things that I had to work with through my Ph.D., listening to stories about bullying. Bullying was pretty rampant in physical education class, pretty common in all classes. But as a physical education just was for some reason a space in place with kids with autism in my study were being really bullied big time. And part of it they said it was because the teacher wasn't always around. So if they're in the change room, while there's no oversight and bullying was happening, there was talk about physical bullying, sometimes pushing, shoving, tripping, kind of towel snapping, but then also kind of verbal bullying, such as, you know, being called all kinds of different names. And there's also the social bullying piece where some kids who wanted to participate were told by the more dominant students, no, you can't. And they were substituted out by a peer, not a teacher, by a peer and said, you're not participating today because we want to win the game. Right. So that's another factor that isn't really being talked about in the literature. And to me, it was one hard to to deal with, you know, these stories. And these are just more than stories like these are people's lives that when we wonder why kids aren't being active, it's like, well, when we set up kids for failure and this is happening, I mean, if you or I were being bullied in this setting, we probably won't come back. In fact, we won't come back period right. So we can't blame these kids for not wanting to be active or, you know, there's two participants who used the word hate and they learned to hate activity. Right. And so it's not this ingrained thing that they grow up with that they hated. No, it's like it was a socially learned kind of behavior that became ingrained in them, that they just hated being active.
Dr. Heidi [00:24:07] Yeah. And I mean, that's really no different from an adult too like if I if I hate the idea of running, I'm not going to be something that I'm really making time for or feel motivated to do because there's just not an enjoyable component to it.
Patrick [00:24:21] Yeah. And if it's painful, there's no way we're going to do it. Right. And so, again, when we we try to overcomplicate things sometimes for kids to be either engaged in some sort of activity, sometimes you got to step back and look at what are some of these issues that are happening. And bullying is one of those that, again, we haven't talked about in the literature. There's been a large focus on kind of the behavioral challenges, the sensory issues, the biological kind of components with the motor movement issues. Right. Some kids who might have issues with running, jumping, throwing, hopping, and also literature saying that, you know, kids are just naturally inactive and are lazy. And I keep saying, well, I don't think that's the case. I think we were trivializing it a bit too much in research. And when we step out into the field and we spend enough time with kids, you realize how much more complicated it is. And it's just an esoteric exercise just to say that they're inactive. But getting into the field is where you kind of figure out those in degrees of actually what's happening.
Dr. Heidi [00:25:11] Yeah, and I think this idea of bullying too and what's being found out about bullying really takes us back to the idea of like preparing and educating those who are coaching and organizing those physical activities, too, because they're providing the environment and modeling certain behaviors. Then then either, you know, make bullying, you know, enable bullying. Right. Or let it continue with this message that, you know, it is OK, because maybe competition is number one versus inclusivity of all people.
Patrick [00:25:43] Absolutely. And and again, I don't think teachers do deliberately or maliciously. It's just like you put 30 kids in a room, you put them in a confined space being a gym, oftentimes, especially in school and elementary school teachers don't necessarily have specialized training in physical education. And then some of them might have kind of special physical education teachers. But even then, that doesn't always translate to necessarily think about inclusiveness in the competition. And maybe I'm preaching to the choir. But, you know, the competition piece again comes back from the World War days and, you know, trying to instill a particular type of person to go out in combat, it's like, well, that's not a goal anymore. And if we want to develop lifelong learners in school, we need to do the same thing for physical activity. At the same, when we have literacy and numeracy and skills, there's a concept of physical literacy where we're trying to teach kids to be confident, move mover's, but also develop that joy and passion and enjoyment, which again is missing in what we talk about for the purpose. The first thing people often talk about being active is, oh, I want to lose weight or I want to develop this muscle or body type. It's like, well, no, like we should also focus on the enjoyment piece, which has also been kind of fallen off to the wayside.
Dr. Heidi [00:26:54] Yeah, definitely. So in in my personal experience with doing ASD assessments with the younger children, parents have often tried to get their kids to participate in organized group sports or physical activities and it hasn't gone well like we were talking about before. Can there be a difference between group and individual physical activities with children in youth with ASD in terms of like just interest level and motivation?
Patrick [00:27:20] Absolutely. And we're seeing a trend in terms of when the group activities work well, they work really well. And so with the right environment, either with the teachers or the coaches and the supports in place, if we set up kids for success, they're more likely to participate and enjoy it and be successful. But when we have the flip side of that argument in group settings, right where there's the bullying going on or if the activities don't take into account their needs. So if there's a sensory sort of sensitivity or a sensory kind of focus that needs to be figured out or if there's the rules don't fit in with what they're understanding, then those behavioral components of being active actually, you know, if a kid acts out, it's not because they're trying to act out for the sake of being a bad kid. As Moira talked about, it's a form of communication and sometimes it gets misinterpreted. But the group setting can be overwhelming if those supports in that environment isn't there, and to assume that any child will just flourish by the sake of throwing them into the same mold all the time. Well, I mean, I think it's a little irresponsible, let alone add some of the strengths and challenges of having autism. So we've seen that the group's activities don't always work well and we've seen the more success in the individual based activities. So if we think about yoga and think about taekwondo, if we think about palates, the martial arts really have been from what I've seen anecdotally through my experience, the biggest kind of contributor to success. Some kids love swimming. I don't know what it is about swimming either kids with autism either love swimming or hate swimming. But for those who love it, I think the water and the sensory peace of being in the water, unless it's cold, that's a problem. But the water can be really soothing and calming. And we did have one participant talk about, you know, the ability of being in the water and feeling the water, just going over his skin and through his hair, being soothing and relaxing. And after a long day at school or stress or just that, every single day, realities of waking up, going to school, having so much structure and routine that swimming for him was an outlet to just let go and be himself and not worry about all the other kind of things that come with just living everyday life. And so, the individual activities have been more successful. That doesn't mean necessarily that we should give up on the group ones. I think there is still a need to have that because of the social component, is there more broadly. But generally speaking, martial arts have been a great way for kids to be active in terms of the pyhsical activity peice, but there's also some of the emotional regulation piece through the breathing, through some of the movements and so we've seen a big success through the martial arts.
Dr. Heidi [00:30:01] That's interesting. Yeah, throughout a lot of the other topics that we've had on in these episodes, the idea of time comes up that things take time. Right. And especially with children and youth with ASD. Sometimes, you know, when when there are novel situations, right. I can bring up stress and anxiety and try new things. And so sometimes it's really important to to convey the message that, you know, don't quit right away, give it some time. Right. And also, I think about you bring up a lot of sensory things and we're going to follow up by asking about that. But there's a lot of detective work to do in sort of figuring out like what is beneficial in terms of the environment or what's going on in the experience for the kids and youth in various situations and what might be aversive to them. Right. And how to accommodate that. Right. So the time is also a big factor.
Patrick [00:30:59] It's a huge factor. And and sometimes, unfortunately, kids learn through trial by experiment and by learn I mean, they figure out what they like and don't like. And that's not necessarily the model that we want to use all the time. But at the same time, we don't know what someone likes or doesn't like unless we do it. And it is hard to see your kid struggling, and so by all means, if we see a kid struggling, of course, we don't want to put them into that environment so they can fail again. But the other piece is some kids who were in our studies and have talked about, you know, it took a lot of trial and error. We tried probably at 30 different activities for one kid, I remember seeing was around thirty two activities and.
Dr. Heidi [00:31:34] That's a lot of persistence,.
Patrick [00:31:35] Persistence. And eventually he found boxing and that was his outlet. And there was again, the social and emotional component of yes, it's an individual activity and he was able to focus on his individual things, but there was also some group stuff, some interaction. And he said like the punching bag was his release. He's like, if I was just so tired of, like, life being too routine. And we love routine for our kids but sometimes our kids have also talked about we want to get away from routine and physical activities is one of those pieces that gives some time away from that structure and routine, which in an environment where they're set up for success, can work well. But the time piece is certainly a challenge where to get a kid to be active, sometimes we need to invest the time before an activity. So we talk about front loading activities.
Dr. Heidi [00:32:23] Yeah,.
Patrick [00:32:23] Right. So we know a child's going swimming. You know, some things that we've done with families, I've suggested, you know, watch a video of what it's like to go swimming. What does a swimming lesson look like? Why don't we talk about the process and create a video about, OK, you're going to come to Holland Bloorview, you're going to go to the change room, and you're going to put on your bathing suit. You're going to wait at the door, someone's going to meet you. Then you're going to have someone meet you at the door and take you into the water. And so having that process is sounds really tedious and really long. But if we can spend even a few weeks before the activity starts to explain one step at a time each week, then that sets up our child for success to be able to participate so that when they come to the environment that's new and stressful and anxiety provoking because they don't know what's going to happen. They don't know the people. I mean, we're they have another tool in our tool belt to say, well, actually, I don't know what's going to happen. I can try and predict this. And this might be more successful if we can front load activities, whether it's writing out the activities and the process of what's going to happen or showing a video. I think that's another piece that we can add to the puzzle. So I had one child who loves surfing and luckily they're in Vancouver.
Dr. Heidi [00:33:33] It would be a problem if they lived in Toronto.
Patrick [00:33:36] And I remember talking to his mum and she said like they went through the process of even watching a video of how to put on a wetsuit because, again, the wetsuit is so tight and that sensory peice can be annoying and stressful. But they watch the video of putting on the wetsuit and going to taking pictures of where they're going to meet the instructor and getting a surfboard and then meeting the instructor and then walking to the ocean and then getting on the board. And all those pieces, again, sound like a lot. But when we break them down that way, there's a chance that the kid is going to be able to pick that up. And when they come to the environment, they'll be able to kind of put those pieces together rather than just throwing them into that environment and assuming that they'll do well. Some kids might, probably won't. So then again, it comes back to us to try and facilitate that learning as much as we can.
Dr. Heidi [00:34:22] Those are great tips. Yeah. And I guess also too then the idea of parents also probably talking to coaches and organizers ahead of time to giving them information about their child as well.
Patrick [00:34:35] Yeah, I mean, that's a huge resource. I know it's somewhat touchy for parents. It's like I don't want to single my kid out. I don't want them to judge my kid or to make it any differently based on their diagnosis. And I fully appreciate and respect that. The flip side, though, also comes at the cost of, OK, if my instructor knows that this is what they might need or these are the supports and accommodations, then that does increase their chances to be successful in that activity. Oftentimes parents ask, what should I do I said honestly, do what you're most comfortable with and if you're OK and you know, I've really seen a wide range of parents of some of them who are very, you know, pro autism label and are able to go and use that in a way that's supportive and they'll go and talk to everyone about it. There's other people who are a bit more apprehensive, and that's OK. But it's finding out what you're comfortable with and working within those somewhat confines to then figure out how you can support your child. Oftentimes, for someone who doesn't know your child, the more you can give them in terms of supports strategies, what to look for, what sort of triggers might be there that provides the coach or the instructor a bit more to know how they can fit them in. But again, that comes back down to individual preferences. And thinking about the whole environment as itself because the child is just one piece, right? It's the coaches, it's the teaching. It's the activity. Right. And so, again, that's a resource. Doesn't have to be only a resource, though.
Dr. Heidi [00:35:57] Yeah, totally. So getting to the sensory aspect of sports and physical activity. So you've brought up some amazing examples throughout. But when we were talking before the interview, it was really interesting to me about how you discovered through a lot of your research and experience working with kids and youth, with ASD just finding out what sensory elements often like really motivated kids to be active. What kind of things did you guys find out or examples?
Patrick [00:36:29] Yeah, I never thought that this would be something that would draw kids in, because usually when I think of sensory, I think of aversions and autism or I think of sweat, being overly sweaty. I've been told by some kids on the spectrum like, no, I ain't doing it, I'm sweaty and smelly, don't like it. And or there's other people who are sweaty and smelly around me. And I don't want to touch them I don't want to be around them. And so that to me was fascinating, is like I have never thought of that. Like, why would that be an aversion? But I get it. Like, you don't want to touch someone whose sweaty if you're playing basketball or soccer and if that's your aversion, that's what it is. But on the flip side of that, we've also learned the sensory pieces draw people in. So one of them was an individual who goes for walks or runs. And he said just the feeling of having his feet hit the pavement was soothing and that repetitive kind of pounding on his feet and just kind of connecting him to the ground. He said it's like he literally his words were it's what grounded me was feeling that my feet hitting the ground. And I said, man, like sometimes these things that we take for granted both either parents or as educators or researchers, because it's like, well, we don't necessarily always understand that experience to the same degree they do. But to hear that, I was like, OK, well, why don't we ever talk about the sensory pieces of activity, which we don't talk about it. Everything's always about health. So I always say one way we can engage kids in terms of promotions is to talk about the sensory benefits. The other one we talked about was the swimming and, you know, the water going through the hair, a third one being just providing a sense of inner peace and calmness from the sensory environment. So when the activity is kind of optimally conditioned and everything's working well, some kids talked about just being able to relax and be themselves where, you know, the heightened anxieties of being in school, of trying to run around all day and get schoolwork done, or even sometimes the process of getting to school is taxing. And that's exhausting for the child and to be in a sensory environment where they can just breathe and relax. I remember there was one participant in his interview talked about saying that, you know, it was like taking off the handcuffs at the end of the day, like when I was in my zone, which is the boxing, he's like there was no one else around. That was just me. And that's what allowed me to be me. And I didn't have all the expectations and the pressures of trying to be someone who I was not. And so that was another fascinating piece to see how important that sensory piece can be. And again, as a way to engage people that we don't often talk about.
Dr. Heidi [00:38:52] Yeah, that's really interesting. We've talked about some misconceptions that parents or people might have about physical activity in children with ASD. Do you find that there are any other, like, common misconceptions that parents or people in general have about physical activity and those with ASD that we haven't talked about?
Patrick [00:39:14] So I think there's a few social ones and there's a few research. And so my biggest pet peeve and there's a few published papers on this is research that has argued that kids with autism are naturally unmotivated and or are more likely to be sedentary and lazy because of either social components or that the drawn to the iPad. And I get it, there's a potential kind of understanding of why that might be the case. But at the same time, I argue it's I would say it's not nearly as simple to explain that a kid's sedentary because they like the iPad or that they're naturally biologically wired to be lazy. It's like, well, no, if you see the kids who are active and are on the spectrum, I mean, they're usually the opposite. They don't want to stop being active. And that sometimes is a problem as well. Becoming active becomes almost an obsession, and we did have some of those kids we've talked about that where one was like I had to do 100 sit ups a night so I can fall asleep because the sensory soothing piece, but also it can be unhealthy when it kind of hits to that extreme right. So that's my first myth is trying to bust you know, I like to be myth buster sometimes and to bust the myth that kids with autism are naturally lazy or unmotivated I don't think that's the case. I think the kids who are, quote unquote, unmotivated, don't have the right supports or don't have the right environments and exposure to get them to be active, and that also flows into sometimes our misconception of what even is activity. I think we are hyper obsessed in a society with sport. Sport is a great thing, but at the same time, it's not the only way to be active. And so sometimes we complicate it more than we should. And being active includes going out for walks, either individually or being on your own, doing house chores. Right. Those who do the house chores, we know that a full day of that or half a day of that. I mean, that that's pretty taxing. Yeah, right. Raking the leaves, doing something either inside the house or outside of the house, mopping, walking up stairs, making those small adjustments all count as activity. And again, I'm not completely discrediting sport. I think it has a place and it's important for kids on the spectrum to participate in sport if they can. And it's our job to try to facilitate that. But I don't think we should complicate it more than we should and find different ways that we can be active either as a family or individually. And sometimes that gets lost in translation where there's a real fixation on, OK, we've got to be in this program. And I know some parents have talked about that they're just taxis and they'll pick up their kids from school and take them from one thing, from therapy to another program to another. And by the time they know it's 8:00 or 9:00 and they're just exhausted and your kid is exhausted as well.
Dr. Heidi [00:41:45] I'm exhausted just listening to it.
Patrick [00:41:47] Yeah. Yeah. So is trying to simplify it as much as we can. And I think if we can build activity into our days, I mean, we naturally now live in a pretty sedentary environment. But if we can build in walking either before school after school, after dinner. Cycling is another great activity for those who are able to do that based on resources and the space that they have. Even again, yoga, finding simple things that can be active throughout the day adds up. And so there's a misconception that's like the guidelines say 10000 steps a day, if you don't do 10000 steps, doesn't mean that it's bad. That's a guideline. But we shouldn't get hung up on the fact that we have to do 150 minutes a week, which is the guideline for kids. But if you break it down, you know, for 20 minute segments throughout the day, about an hour a day's the guideline for kids, then they'll hit that rather than saying, well, we have to spend an hour fully committed to this. We know our kids on the spectrum probably won't do an hour fully engaged. So breaking that down, taking that guideline, but putting it in a way that is usable and saying, well, if we do 20 minutes in the morning, 20 minutes in the midday, 20 minutes later on, we've had our our physical activity go right. So I think it's just modifying our expectations a little bit and then also making it fit to our lives. Because the number one reason people won't do activity from what I found in our in our families is just it doesn't fit into the nature of their daily lives. And again, that's not a knock on families. You got a ton of stuff going on. But if we can make it a part of their life and if we can find the enjoyment peice, if we can provide a sense of purpose and family and bonding and cohesion, that's where we see the kids who are active are doing it as a family rather than just having kind of the one off kid doing it on their own.
Dr. Heidi [00:43:27] That's such an important message. Like just that the idea of not completing physical activity with sports or like a special organized activity. Right. We're recording this during the covid pandemic. So certainly physical activity is one of those areas that we see definitely being affected by the pandemic restrictions. And I can think of even just one kid that I was talking to yesterday, we were thinking about his physical activity and he was engaged in curling for a long period of time. And we got like about 12 hours a week or so where he was participating in that. And so we were thinking like, that's not happening this year. How else are you getting your physical activity? And as it turned out, he's decided to walk to and from school this year. And that's forty five minutes each way. And that's just a natural part of his routine anyway, he has to get to school, so why not kind of like get the added benefit of the physical activity? How have you been finding things in terms of like the pandemic and the ASD population with physical activity?
Patrick [00:44:29] It's certainly been a challenge in terms of, again, like our everyone's world was turned upside down. But I think for kids on the spectrum especially, it's been tough where we spend so much time on routine and predictability and focus on certain things and then that just disappeared. And then the summer came and went. And now kids are supposed to get back into a structured routine. And so that's been hard for some kids to get back into that structure and routine of any sort. But in terms of activity, it was the same thing where there's a real kind of worry initially, given there's still so much unknown with the pandemic. And some families would say, like, well, my kid doesn't go outside and I can't let them. And to to that extent, of course, we respect that decision. But at the same time, what we try to do is develop these online physical activity programs, what we call fit Friday.
Dr. Heidi [00:45:17] And this is through the Center for Addiction and Mental Health?
Patrick [00:45:20] It was. Yeah, and it was just one of those things. I was like, man. What can I do with what I know and the resources that I have to try and help at a time when the world is really need some some help? Right. And and so we offered online activities and every single week we did a different thing. So it was one week we did Tai Chi and I've never done Tai Chi in my life. And here I was pretending that I was an expert in Tai Chi. And I think sometimes it brings humility to both the researchers and people who do activity and the families where acknowledging that we're not experts, in fact, we learn way more than than we're giving information most of the time. And just being kind of humble about that process was helpful to hear from parents to say, look, you don't know everything. No, I don't know if I'm learning the same way you are. And so trying to find innovative ways, whether it's the online physical activity components, the workout videos, I know there's that huge push up challenge that was hitting Instagram and Facebook and that might probably not work very well for our kids, but it's finding different supports, whether it's the curling and somehow you can curl at home. Bowling, I had one family ask about how do I get my child to bowl, and I said, well, one way you can do is get empty water bottles, fill them up a little bit so they're not fully empty. Make it a bit more challenging. Make sure they're sealed because they had a mishap of one of them not being sealed and it caused a bit of a mess and getting a tennis ball and practicing that way. Right. And that might be five minutes of engagement, but that's five more minutes than they did the previous day. Right. And again, it's not only about fitness, it's finding all those different activities that can engage a child, whether for five minutes, for 20 minutes, for an hour. It's just trying to be creative and coming up with certain sort of movements that will provide a difference, because we know it's easy to for all of us to sit in front of that TV and not move. Right. And especially when we're really confined to our space becomes a challenge. But at the same time, I think now more than ever, we have the opportunity to be creative and we have somewhat of a duty to try and find ways to get our kids to be active, because we know kids on the spectrum are struggling and generally they're probably struggling to begin with, at least the youth that I've been seeing throughout the pandemic they were having challenges to begin with and then the pandemic has really exacerbated that. But for the kids who came to our programs, they talked about, you know, like this is the one thing I look forward to all week. This is the one hour I had that I get to hang out and talk to people. And, you know, we had an hour session, but we would do 20 minutes of activity, kind of a ten minute warm up and cool down. That's half an hour. And then we spent about 15 to 20 minutes just having them socialize and having a place to engage. And even if it was once a week, that was something that they valued. And when we took a break over the summer, the overarching kind of feedback was, well, hello you need to bring this back. And that is our goal. And our goal was to I mean, what are we doing so well we had an in-person thing planned and was ready to get off the ground. And then we are where we are right now. So we might have to bring the online back, but definitely trying to find ways that are creative or novel, even new activities you've never done. Like I said, I've never done Tai chi. We did it in the Friday just as an experiment because I was like, well, I don't know, I've never done this with people with autism, let's see what happens. And it was much more successful than I thought would be so.
Dr. Heidi [00:48:36] Well, I even like the fact, though, that like taking into consideration that you like are humble and like acknowledging that, you know, I'm just trying this out like I'm taking a risk and trying something new, because you're also modeling that for the kids as well. Right. And that speaks to also maybe something for parents to keep in mind, too, to also kind of model that like taking, you know, taking challenges, like taking risks and trying something new, like they don't have to be perfect in doing it, especially because those parents are also like in a lot of cases at home with their kids, too. Right. So if they're trying to boost that kind of family context, the physical activity, that might be one way to do it as well.
Patrick [00:49:16] Absolutely. And I remember listening to one of my participants, things like, well, my dad doesn't do it, why would I ever do it? He was an 18 year old who is I think I don't know if that's the 18 year old piece of him or if this was kind of his sassy part. But it was just it's like, well, I don't blame you as a family if that's not valued and that's OK, then you're probably not going to be active. But if let's say you do a family walk, if you can make it outside for 20 minutes after dinner every single day, you know, try and build that into your routine so that everyone does it. If 20 minutes away from your phone, I know for all of us that our devices, I mean, it's an addiction, right? If we have that twenty minutes even just to take a break from that in any way, whether it's, as I said, a walk or some activity that you're doing yoga, be it Tai chi, whatever, anything that is just kind of out of the norm and gets the family engaged together we know from research that families that are active have kids who are active. So, again, we can bring that family unit to be active not only does the child benefit, but the parents will benefit as well. And like you said, I mean, we're all at home most of the time cooped up and parents will often say it's like that was the best thing I did today was just go out and take a breath after running around and trying to do a hundred things. And sometimes you just need to slow down to actually catch up. And that's counterintuitive, but it is very soothing to try and slow down. And if it's activity, then that's a bonus. Yeah.
Dr. Heidi [00:50:32] Yeah, totally. So we've been focused so much on the idea of like trying to enhance or boost physical activity for those with ASD. But you did mention that you've also seen cases where it's the opposite, where there's kind of like extreme levels of physical activity for various reasons. Do you have any tips for parents or professionals who are dealing with those types of situations and how to manage that?
Patrick [00:50:57] Yeah, absolutely, and it's definitely a double edged sword where you have a kid who wants to be active, but when it becomes an obsession, when it delivers something that is more than just the activity component, that's when it becomes worrisome. So the first thing that we always talk about is kind of monitoring what's happening. Right. So in the physical education kinesiology field, we have the FITT principal, right, so f would be kind of frequency, the I would be intensity, T would be type and and then the other t's time so FITT. And so when we're following kids who are having what we would say almost on the other extreme verge of being active, we want to see how frequently are they doing. How intense is it? How long are they doing it and what is the type? Right. And so based on those four questions, we can try and start to deduce, OK, is it because there's something going on in their life that they're being hyperactive in a way through physical activity? So for the child who is doing, you know, the 100 situps before bed, you know, you take that at face value and it's like, well, no, he's obsessed with his activity. But turns out he was struggling with a few mental health things at that time. Right. And so he was coping in a way that he found soothing. And you put those two pieces together and it's like, yes, it's relatively not great that he's doing 100 situps before bed every single day, but he's also coping. So then which one do you kind of which battle do you choose, right. And you know what ended up happening in that situation is that you know, you shouldn't have to do this every single day, let's try and find another mechanism and bring that those 100 situps down from 100 to slowly try to do 90, then 80 and then 50 to taper that off. Right. The same the same way you taper off you know, if someone's transition medications the same way we taper off rather than just fully taking them, taking it off. Same thing we do in this context. We try and figure out what are the stressors, what is the stimulus, why is this happening? And then we'll try and readjust that behavior. And again, in this context, it was more than just the behavior. It was a stress coping mechanism is a central component. So monitoring, like I said, the frequency and intensity, the type and how long they're doing the things for is is one way. The flip side is we don't want to discourage activity, right? So it's like, OK, we ask a kid to stop and a natural reaction might be we are going to stop everything. So, again, we want to try and redirect the behavior in a way that is supportive but also not damaging. So if it could be, for example, do you want to try something new? Do you want to take a break? It's like you've done activity for six weeks every single day. You're probably tired. Do you want to take some days off? And sometimes kids on the spectrum might not even realize it. Sometimes they're doing it deliberately and they're aware of that. And of course, that's not to undermine every single person on the spectrum. But some kids might not even realize it. And even having a discussion to say, like being healthy is important. But also at the same time, we don't want you to be on the other extreme where this can become a problem or it can become dangerous. So if there's anything we can suggest, it's having kind of that discussion early. We know with anything, if you have a discussion earlier, it's usually better than having it later and then trying to, like I said, redirect the behavior and finding out what's going on. And so from a real behavioral standpoint, find out why is this happening. It's often not happening accidentally, but it's trying to make it a more positive light of that situation.
Dr. Heidi [00:54:20] Yeah, it makes me think about a client that I had, in particular a therapy client who was about 10 years old. And he got in a very extreme way into weight lifting. And so he really benefited in a lot of ways from weight lifting. But he set up some really intense goals for himself. But what was clear was that it was one of the few areas where he actually felt good about himself. Things were going, um, problematic in terms of school and socially and stuff like that. So the school and other people around him were really powerful and being able to, like, enable him to do certain activities related to weight lifting and talk about it with his peers within the school environment and stuff like that. And parents definitely consulted with their pediatrician as well, just to make sure that thinking about like intensity and frequency that for a 10 year old body, it was something that that was realistic and not to his detriment.
Patrick [00:55:15] And consulting with clinicians whenever you can is obviously for your first point of contact. It's just something problematic or that you're worried about. Definitely. If you speak to your family practitioner, that would be kind of the best place to start and then trying to figure out what that looks like from there. And again, like now in medical school, slowly, people are being trained to actually prescribe physical activity as a treatment for certain things. And so more physicians are aware of that. And so, again, it's not maybe 20 years ago. What are you talking about? But now it's pretty well accepted. And so they'll probably be able to help you to try and scale that down or to find a way that we can kind of minimize that problematic behaviour, because, again, for this boy, it had a double edged sword. Right. But it's trying to minimize the extreme end of it to try and redirect that sort of behavior at the end.
Dr. Heidi [00:56:02] Yeah. Do you know if there's any research around we talked about using sports and physical activities for, like, all the kind of social emotional benefits. Right. About being around peers and stuff like that. Do you know of any research where it's used like in a therapeutic way to kind of like, um, teach issues around social emotional processing and communication?
Patrick [00:56:26] So funny enough, is included in most behavioral therapies. The thing is that we never get that far in the curriculum to actually implement it. So in most behavioral kind of models of applied behavioral analysis, right, and even just interventions, it's usually one of the last things of like the supports. It's like usually letter M or P or K, like it's just so far on the bottom of things and oftentimes reading and the social communication behaviors come first. And so we never make it to that part. But it's in a lot of curricula. It's actually there like in the Denver model that we use, it's there. We just don't get that far. So the research is suggesting that, yeah, we could use activity as one way to enhance social communication skills. So if it's playing with a ball and having a goal oriented movement with the ball, but also having something to do with, you know, following instructions or also being able to execute a task or focusing or sitting, I mean, we can use it as a tool. I shouldn't say it's the only tool. It's not. But I think it misses the mark if we just completely discredit it. The one thing that I'm trying to develop and this is probably take 20 years of work, is a model of adventure based learning, and it's being slowly used in the outdoor education settings. No one used it in autism spectrum disorder yet. In my PhD, that was one of the solutions that I said. It's like, let's think about this way of teaching. And and it really tries to get away from just the fitness obsession of physical activity. But to use problem solving and thinking and peer connections and finding ways that engage kids while also developing the social and emotional benefits, right? So if it's for example, you know, you have a hula hoop and you're trying to get over, you know, the bridge because there's a river, well, we want to teach kids, like, how could you use these physical activity patterns using hula hoops to build a bridge and then they can hop from one thing to the other to then go over to the other side one their problem-solving thinking, two, they're being active. And three, they're doing it in group settings. So if that all works well, I mean, it is a potential model that we could use. It's very interesting, and noboady's talking about it yet. And hopefully we can do something like that here at Holland Bloorview one day to see if it works or not. But definitely there is a bit of that application of physical activity being a therapy. But I think it's also important not to co-opt the two. I think we want to also keep physical activity as the emotional and the social kind of benefits and rather than just saying you should only be active for therapy, I mean, there's every therapy has its own benefits and drawbacks. And I think you should also remember that. It's not a be all and end all is what I'm saying I think we need to recognize that and not overpromise and understand that there are other things we have to do, such as speech, such as behavior therapy. Such as you know, occupational therapy, et cetera.
Dr. Heidi [00:59:13] Yeah, but some exciting ideas about how physical activity can be broadened right in the scope of learning. We're recording this during Holland Bloorviews Dear Everybody campaign, which really focuses on trying to get people with disabilities, especially children and youth more represented in visual media. Do you know of any like people with like individuals with ASD who are like really well recognized for like physical activities?
Patrick [00:59:41] No, and that's definitely one of the purposes of a campaign, right. Is to not just amplify the voices, but to put a name to a face to individuals. And that certainly has been lacking in our field specifically. I think when people think of science, the things people who have autism think of actors, potentially they think of people and film and television that's really taking all the spotlight. And we certainly have a long way to go. But I don't think it's impossible. I think certain strengths and uniqueness that we have for our individuals. I mean, it could be something that we should be proud of and something that we definitely do put more effort to amplify those voices and faces and to say, again, like this is an identity that shouldn't be discounted just because of the diagnosis that they have.
Dr. Heidi [01:00:24] Yeah, yeah. So lastly, for parents and families who are listening, who may have a child or a teen with ASD, that they're thinking, I really would like to get them more involved with physical activity, what kind of tips or suggestions do you have for them?
Dr. Heidi [01:00:38] All right. So I'll keep it simple, because I think, again, we don't want to overcomplicate being physically active. Right. So the first thing is try and keep the activities simple, especially if it's new or starting a new routine. If I asked you to run a marathon right away, there's no way you're going to be able to run the marathon without setting you up with those progressions. Right. So if it's a new activity, such as going out for a walk with a family, start off small, start off with maybe five minutes, and then if it's working well, make it 10 minutes and then try and build it to 15 to 20. Right. We want to try and progress every single maybe week or so so that we can try and build on that and the biggest thing when our kids see success whether it's physical activity, whether it's in school, I mean, there's no better feeling for us that when we see ourselves successful, you're more likely to do anything, right. And I always say for our kids, success breeds success. So if they know they're successful, they feel successful, they're going to do it again. If we can set them up through progression, whether it's the five minute or 10 minute and try and build on that, they'll definitely be a way to do that. So try a new activity, work through progressions, have exercise snacks the same way we snack throughout the day, think about how can we incorporate activity? So again, it's not doing it all in an hour. It's five minutes here or there, 10 minutes, 20 minutes. And having those snacks throughout the day could be another way to do that. And so people are asking, so what does that look like? It's like, well, after you're done using your iPad, you've got to use the washroom. You've got to go to the kitchen, stand up, walk around, go, you know, do a few squats or do a few push ups or jumping jacks or stretch even. Right. Stretching is such an important physical activity that is always undervalued. Right. And so it's like do something after something you've been doing for a while, whether it's like a child, you know, in school, comes home, have them do something even for five minutes in that moment and break it up throughout the day is another way that we kind of can incorporate that into their day. And then the last piece would be, again, to try and do it as a family, because when the family does it together and it works again, we see just benefits for everyone. Right. And so whether it's trying something new and saying, hey, like we've never done yoga, let's try and find a film and have some fun and be silly or Zumba. Zumba has been one of those activities that families have kept telling me throughout the pandemic has been their number one thing. Where it's dance, it's music. And I'm sure, you know, our kids love music. And if you find the song that they like, they will rock out completely. Right. So, again, finding those things that interests the family and trying new things that will kind of pique their engagement are certainly tools that they can use.
Dr. Heidi [01:03:05] That's great. OK, so we've talked about so much with respect to physical activity. And I think for parents and families, who are listening they probably feel the same way that I do. I feel almost kind of like energized and like ready to go after talking to you about all these things. Thanks so much for joining us, Patrick.
Patrick [01:03:22] Thank you very much for having me. And I look forward to hearing how the rest of the podcast goes.
Dr. Heidi [01:03:27] Thanks so much.
Dr. Heidi [01:03:30] If you listen to this episode and have comments or ideas that you'd like to share with us regarding future episodes or what you heard today, feel free to email us at ASDengage@hollandbloorview.ca
About the podcast
ASD Engage is made possible by donors, through Holland Bloorview’s No Boundaries Fund. The No Boundaries Fund allows teams at Holland Bloorview to apply for funding in order to respond the emerging needs of clients, families, and frontline staff.