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.
