When the federal government unveiled its new Framework for Autism in Canada strategy last year—following years of activism demanding a plan to address disparities—the reaction from families impacted by autism was strongly critical.
Opponents argued that the new autism strategy lacked two essential ingredients: Dedicated funding and firm deadlines. This news coincided with the decision of the non-profit Autism Speaks (AS) to close its Canadian operations last month, this time eliciting celebration from many in the autism community.
AS had long ago gained a reputation as a controversial organization. Its original mission was to find a “cure” for autism, and in later years it ran offensive advertisements and indulged the idea that vaccines may cause autism—a theory that experts have repeatedly proved to be false.
Now, in a decisive moment where critics are calling for the federal government to establish better support for those in the autism community, AS’s missteps should act as guidance towards more effective and comprehensive federal autism support.
This starts with including the voices of those with autism. For its first decade of operation, AS did not have representation of individuals with autism on its Board of Directors. While the Canadian government purports to use a “Nothing Without Us” principle—ensuring those with lived experience are meaningfully involved—there must be a standard of continued consultation with autism advocates and stakeholders when implementing recommendations.
In 2024, AS allocated only 12 per cent of spending towards services and support going directly to people with autism and their families. The organization’s Canadian branch reported spending about five million dollars to connect families with resources over the past eleven years. For reference, the company has had an average expenditure of as much as four million dollars annually, since 2006. The remaining money was spent on research, fundraising, and awareness.
AS also repeatedly ignored advocates and neglected to address their complaints. In 2009, they released an ad campaign, titled I Am Autism, comparing autism to cancer and blaming autistic children for their parents’ failed marriages. After aggressive backlash, AS removed the clip and promised to shift away from negative, fear-based messaging. However, they continued to produce content with the same harmful tone, framing autism as a tragic condition. In 2019, their 100-Day Kit for parents of newly diagnosed autistic children mentioned the stages of grief for those who want their children to “get better.” While the toolkit does contain useful material to help parents adjust, it also attributed spousal arguments to displaced anger about autism, and included a parent testimonial comparing their child’s diagnosis to that of leukemia. Autism is not a fatal disease.
Now, the autism community in Canada is speaking up about its disappointment with the federal framework, which lacks substantial initiative for support for those with autism and their caregivers. The federal government needs to address their disappointments—both from AS and from the government’s own past failures—and deliver a detailed plan that avoids repeating these past mistakes.
The government’s excuse for its insufficient autism support resources has been largely attributed to jurisdictional squabbles, as they cite the fact that healthcare is under provincial control. Quebec released an action plan on Autism Spectrum Disorder for 2017-2022, which was generally comprehensive but also lacked clarity on enacting measures. No specific updated action plan has been released since.
In recent years, AS changed its mission statement, apologized for its harmful ad, appointed members with autism to its board, and stopped funding research casting doubt on vaccines. But its response was belated. While AS Canada claims public perception was not a factor in its closure, the damage was done and it was clearly too late to make amends.
To operationalize their new strategy, the Public Health Agency of Canada (PHAC) has established the National Autism Network, setting aside six and a half million dollars over five years. As this sum gets carved out, the Canadian government should note the failures of AS to prioritize services. They need to avoid following in their footsteps by dedicating sufficient amounts to reducing diagnosis wait times, opening up spots in group homes, and improving access to education.
There’s still time, however, for the federal government to get it right.
