Government of Canada funds project to better understand the needs of Autistic adults in Canada
April 19, 2023 | Ottawa, Ontario | Public Health Agency of Canada
It is estimated that 1 in 50 children and youth aged 1 to 17 years in Canada have been diagnosed with autism (also known as autism spectrum disorder or ASD). The specific indications of autism, and when they present, can vary significantly from person to person. Some people show signs of autism within the first few months of life, while others don't show signs until much later. While there are supports available to autistic individuals and their families throughout their lives, traditionally, autism research to date has been largely focused on children and may not improve our understanding of the experiences and needs of Autistic adults.
Today, the Honourable Jean-Yves Duclos, Minister of Health, launched the second day of the Canadian Autism Leadership Summit by announcing $214,883 in funding for the Autism Alliance of Canada (AAC) to address gaps in knowledge about the needs and experiences of Autistic adults over the age of 30.
With this funding, the AAC will develop a survey focused on various topics, including those that can affect quality of life such as employment, social communication, health, and daily living. The findings from this needs assessment survey will be used to inform the development of patient-reported outcome and experience measures specific to autism. They will also be used to inform future research and policy priorities, including the national autism strategy.
This research project led by the AAC will be developed in partnership with the Sinneave Family Foundation, the Canadian Institutes of Health Research, as well as McMaster University’s Autism Research Team and Canadian Journal of Autism Equity.
“Today, we are taking another step toward the national autism strategy and helping to address gaps in knowledge about the needs of Autistic adults in Canada. We will keep working with all our partners, including community organizations like the Autism Alliance of Canada to advance communication-action research in this area and provide evidence to improve future pathways of care for Autistic adults.”
The Honourable Jean-Yves Duclos
Minister of Health
Autism is a lifelong neurodevelopmental condition. It presents in many ways and can affect sensory processing, social communication, ability to carry out certain tasks, as well as emotional and behavioural regulation.
Bill S-203, the Federal Framework on Autism Spectrum Disorder Act received Royal Assent on March 30, 2023. This legislation outlines a commitment for the development of a federal framework designed to support Autistic Canadians, their families, and caregivers. The Framework will set broad, high-level guiding principles and best practices and will serve as an umbrella to guide national autism activities.
In 2022, the Canadian Academy of Health Sciences published an assessment report on autism highlighting gaps in knowledge regarding the needs and outcomes of Autistic adults, including quality of life, activities of daily living, loneliness, and mental health.
Over the last five years, the Canadian Institutes of Health Research has invested approximately $78 million in research on autism. This research is increasing our understanding of autism and guiding the development of innovative tools and more effective ways to support Canadians on the autism spectrum and their families.
Budget 2021 provided PHAC with $15.4 million over two years to work collaboratively with provinces, territories, families and stakeholders toward the creation of a national autism strategy. Continued collaboration and knowledge-sharing across sectors and disciplines will help improve our understanding of autism, and support the needs of Autistic Canadians, their families and caregivers.
- Autism: About, causes and co-occurring conditions
- National autism strategy
- Federal Framework on Autism Spectrum Disorder Act (S.203) - Parliament of Canada
- Canadian Autism Leadership Summit – Autism Alliance of Canada
- Autism in Canada: Considerations for future public policy development – Canadian Academy of Health Sciences
- Autism Spectrum Disorder - Highlights from the 2019 Canadian Survey on Children and Youth (report)
Senior Communications Advisor and Press Secretary
Office of the Honourable Jean-Yves Duclos
Minister of Health
Public Health Agency of Canada
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