Autism Speaks is leaving Canada. Is that a good thing?
CBC
Some Canadians are celebrating a major autism organization's decision to pull out of the country, highlighting a shift in the way people think about autism.
Autism Speaks quietly announced last month that it will end its Canadian operations on Jan. 31. "The intentional decision to conclude was not taken lightly and has been weighed against responsible stewardship through and through," read a post on its website, which has since been taken down.
The largest autism organization in the U.S., known for star-studded fundraising events, has long faced criticism from people in the autistic community who say its work has focused too much on trying to "cure" autism and eliminate behaviours associated with it — ideas that have fallen out of favour as advocates work to embrace neurodiversity.
Autism Speaks set up in Canada in 2006 with a goal of finding a "cure" for autism. It dropped that word from its mission statement in 2016, and an official with the organization told CBC News it has long since moved past those early ideas.
Some autism-related forums and accounts online cheered the news of Autism Speaks' exit. Disability satire Instagram page The Squeaky Wheel shared the news with a photo of children leaping happily, with one person commenting, "GOOD RIDDANCE."
An autism advocacy account on Threads called the closure a "step forward for human rights." And a blog post from Autistics 4 Autistics (A4A) Ontario, a self-advocacy organization, quoted an autism advocate calling the news a "Christmas miracle."
Anne Borden, co-founder of A4A Canada and A4A Ontario, says Autism Speaks' exit is "a sign of the times."
"I think it reflects the big question for autism non-profits and policymakers right now about the direction of autism services: Do you try to cure it, or do you include it? And what do parents and families want?" Borden said.
Autism Speaks ran an autism response team to help connect families with resources, and reported spending close to $5 million in community grants for work on the ground during its time in Canada.
But much of its funding went to controversial research projects, and some autistic Canadians say the organization has done more harm than good.
Borden cites the MSSNG Project, a collaboration between Hospital for Sick Children, University of Toronto, Autism Speaks, Verily and DNAstacks, which collected DNA from more than 12,000 children with autism for use in a shared database to create a genome sequencing database on autism.
Some autistic Canadians worried the goal was to identify, and ultimately eliminate, an "autism gene," saying the research was driven by eugenic ideas. Researchers, however, said they were simply trying to understand the biology of people with autism in order to identify better interventions and supports.
Regardless, Borden said that type of research is not what autistic Canadians need.
"It doesn't really benefit anybody in real life in terms of the actual needs of autistic people — which is, of course, improved housing, improved employment, inclusion at school, better access to health care and an end to disability poverty," Borden said.
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