Vivian Ly and others in the autistic community don’t need a national autism charity to speak for them. They already have voices and deserve to be listened to.
Those were among the messages Ly and other members of Autistics United had for those who came out for an annual walk hosted in Richmond on Sunday by Autism Speaks Canada, a non-profit that Ly’s group says does not represent their interests.
Scores of families attended the walk to help fundraise for the national organization, which provides resources, programming and services for autistic people and their families, and that supports autism research. The walk raised nearly $50,000, and over the years the organization has raised about $10 million for research and $5 million for family services, according to its website.
But during the walk, members of Autistics United stood on the sidelines, holding signs that read “Acceptance, not cure,” “Disability rights are human rights,” and “Autistics are speaking. Listen.” They handed out pamphlets and shared some of their concerns with some of the people who participated in the walk.
Autism Speaks Canada did not respond to a request for comment Sunday.
Ly rejected what they termed a “deficit model” that assumed “there’s something missing in us,” and said they wanted to see the Autism Speaks logo, a puzzle piece, changed. Puzzle pieces have long been used as a symbol for autism, but there is controversy around its use because of problematic ways it could be interpreted.
They also found fault with Autism Speaks’ support for genetic research. The group has helped identify scores of genetic variations that affect autism risk, according to its website. “While that may help with an understanding about autism, there’s a huge concern about this being a slippery slope to eugenics,” Ly said.
Rather than seeking a cure for or cause of autism, there are people who could use support right now to help them thrive autistically, Ly said. As one sign put it, “Finding a gene won’t find me a job.”
Several members of the group said they did not support Applied Behaviour Analysis, a form of therapy that, as Autism Speaks Canada states on its website, has been “widely recognized as a safe and effective treatment for autism.”
Ly characterized ABA as camouflaging intended to make autistic people indistinguishable from their peers. As Sam McCulligh, another member of the group put it, ABA is “basically gay conversion therapy for autistic children.”
McCulligh said one of his concerns with Autism Speaks Canada is that its leadership positions are not held by openly autistic people. In contrast, all leadership positions at Autistics United are held by people with autism.
Brayden Walterhouse said people often try to get autistic people to match society “rather than respecting our right to be different.
“They need to show love and respect for everybody and not so much of a focus on a cure to change who we are,” Walterhouse, who is deaf, said through a translator.
Breanna Himmelright said she was diagnosed with autism at two.
“I spent 16 years learning how to talk, learning how to take care of myself, learning how to more or less pass, but unfortunately I never really got a chance to figure out who I am. So much of the focus was on making me appear normal. I’m more or less here to speak up and say hey, this isn’t something to be ashamed of. I’m autistic. I’m very proud of who I am. And I hope other people can be too,” she said.
Himmelright said she wanted people to know that Autism Speaks wasn’t the only place to turn to for information. “If they want to understand their autistic kids, just talk to an autistic adult. We’re here, we’re more than happy to talk to you about our experiences. Just listen.”