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Dr. Evdokia Anagnostou
Experts worldwide call for new personalized approach to autism care, treatment across the lifespan

78 million worldwide have autism; the majority don’t have access to adequate health care, education and social care services

A new, comprehensive model of autism care and treatment that prioritizes personalized, stepped-care approaches is urgently needed, finds a new international report published today in The Lancet.

The 64-page report identifies key actions required in the next five years to address the current needs of people with autism and families worldwide and to build a foundation for improved care and treatment in the future. Additionally, the report sets out a new standard of care that all services and social care systems worldwide should adopt to best support the needs of people with autism and their families.

The Commission was formed in 2018 by international experts from Canada, USA, UK, Norway and South Africa, including clinicians, healthcare providers, researchers, advocates, self-advocates, and parents of children with autism.

What is Needed Now:

  • Global coordination between governments, health care providers, education, financial institutions, and social sectors to reform research, care, and treatment for autism that will include individualized treatments throughout a person’s life with active participation from patients and their families.
  • Global research efforts to expand beyond basic science toward developing evidence-based practical interventions tailored to the heterogeneous needs of people living with autism and could be applied to other neurodevelopmental conditions.

Canada’s Autism Landscape

In Canada, approximately one to two per cent of the population is on the autism spectrum. One in 66 Canadian children and youth (5 to 17) are diagnosed with ASD.

Dr. Evdokia Anagnostou, one of the co-authors of the global report who holds a Canada Research Chair in Translational Therapeutics in Autism Spectrum Disorder (ASD) at Holland Bloorview Kids Rehabilitation Hospital, says the Canadian system still has room to grow to provide a suite of services and supports that meet the diverse needs of autistic people.

“Because autistic people live, learn, go to school and work in different environments, these supports have to be available across different jurisdictions and ministries, and reflect a lifespan approach,” says Dr. Anagnostou, who is also the assistant director of the hospital’s Bloorview Research Institute and co-lead of the Autism Research Centre (ARC). “Even in a comparatively well-resourced country like Canada, we need better strategies to improve access to care based on individual and family needs. As a part of this, we need to move autism care out of the specialist domain, and support all clinicians and care providers to offer  high-quality care.”

As a senior clinician scientist and full professor of pediatrics at University of Toronto’s Temerty Faculty of Medicine, Dr. Anagnostou has dedicated her career to challenging the field of neurodevelopmental disorders to rethink diagnostic categories and focus on underlying biology and individual needs rather than labels. She and her ARC team have revolutionized traditional ways of thinking by redefining individual patterns of disease/disorder, which can lead to individualized interventions to create more meaningful and healthy futures for children and adults.

Key Actions: Highlights

The authors of the Lancet Commission on the future of care and clinical research on autism call for six actionable recommendations in the report. These include:

1) Personalized, stepped-model approach to care

At least 78 million people are living with autism worldwide, the majority of whom do not receive adequate support or care services, especially those living in low-and-middle-income countries or other low-resource settings. Given the heterogeneous nature of autism, a new personalized, stepped-care approach is urgently needed.

This new approach moves away from a categorical diagnosis toward a focus on support to improve the quality of life for individuals and their families centered around their unique concerns, needs, characteristics, and circumstances that can be adjusted throughout their lives.

“Although numerous well-tried interventions and treatments for autism exist, not enough is known about which treatments or services should be offered, when, to whom, for how long, with what expected outcomes and for what cost,” says Commission co-chair Dr. Catherine Lord of the University of California, Los Angeles (USA). “Autism is an incredibly heterogeneous condition and treatment approaches must vary not only between people living with autism, but throughout a person’s lifetime. This stepped-care approach requires coordination on a global scale between governments, social sectors, healthcare providers, education and finance institutions, and among people living with autism and their families.”

2) Prioritizing meaningful research and clinical practice

National and international infrastructures should be developed to help prioritize research that goes beyond biology and studies of single interventions to focus instead on those that integrate care across systems over time and take into account individual differences within the autism spectrum that lead to better outcomes. 

Recent trials among young children with autism have identified psychosocial interventions that can result in changes that could mitigate the influence of autism on development for some people. Research is now needed to identify what factors enable people with autism to live positive, fulfilling lives – the key elements of effective interventions for children and adults, and the wider environmental barriers to change for people with autism.

“Basic science is often prioritized over more practical knowledge, leaving people living with autism, families, and providers without evidence-based guidance. Individuals with autism are a valued part of society,” says Commission co-chair Dr. Tony Charman of King’s College London (UK). “We urge commitment to greater investments in what can be done for people living with autism and their families now, with a focus on how to build on existing information to answer specific practical questions that will then better inform interventions and services to help people living with autism achieve their fullest potential.”

3) Overcoming global inequities in assessment, care, and treatment

The needs of families who live with autism worldwide are universal. The World Health Organisation (WHO) has recognized autism as a global health priority, with key recommendations for all member states to implement. But many individuals with autism remain undiagnosed, especially in low-resource settings, where surveillance is rarely done for any neurodevelopmental disorder. Governments and services should monitor access to ensure that underserved groups, including those who are minimally verbal, girls and women, minority ethnic groups, those from socially disadvantaged backgrounds, or with severe co-occurring conditions, have equitable access to appropriate services.

Improved care today and for the future

The Commission’s recommendations for both clinical practice and systems change are based on beginning with an individual’s needs and with continual involvement of stakeholders, including people with autism, families, supportive community members, and providers, at each step of the way. Capacity building is essential to strengthening care systems, particularly in low-resource settings and underserved communities.

“Acceptance, inclusion and meaningful participation of autistic people will help us build a better society,” says Dr. Anagnostou. “Children and adults with autism can have happy and healthy lives, but urgent action is needed to ensure these outcomes are met.”

Read the full report