RICHMOND (NEWS 1130) — An advocacy group is challenging assumptions about people with autism and is taking issue with another organization’s practices.
Autistics United came in support of the participating families, but also to challenge what they see as harmful rhetoric and therapy.
The protest was concerned with how Autism Speaks addresses autism, specifically with a model based on solutions rather than acceptance, according to Vivian Ly, co-chapter leader of Autistics United Vancouver
In the past, Ly says Autism Speaks has suggested there is an epidemic of autism.
“It’s really hurtful. It makes us appear as a tragedy that needs to be stopped. For example, in the past the organization has called autism a disease when that is not accurate,” she says, adding an increase in education and understanding is why more people have been diagnosed with autism.
Ly says her group is particularly concerned with the trauma caused by the use of Applied Science Analysis (ABA) as a therapy for autism.
Ly says ABA has roots in gay conversion therapy.
“Like conversion therapy, ABA promotes camouflaging or passing,” she says. “It’s linked to higher rates of depression, anxiety, and suicide among autistic youth and adults. The goal is to make autistic people indistinguishable from their peers.”
Gay conversion therapy is banned in Vancouver, though ABA is still considered a permissible practice, according to Ly.
She adds ABA typically discourages “stimming,” which shorthand for self-stimulation or fidgeting, despite evidence showing it can be useful. Even with “lighter” forms of ABA, Ly says the focus is still on removing autistic traits.
‘Why would you grieve for us?’
Ly takes issue with toolkits offered through the Autism Speaks website. One is for parents of a child recently diagnosed with autism, and includes steps for dealing with the grief of a diagnosis.
“This grief for their hypothetical non-disabled child prevents them from really loving the child right in front of them. It’s really hurtful. Why would you grieve for us?” she asks.
Ideally, Ly wants to see the promotion of a neurologically-diverse framework — one that focuses on an individual’s strengths instead of their perceived shortcomings. Though doing so comes with its difficulties.
“For people to do the work in challenging assumptions about autistic people and disabled people in general, seeing where that deficit model sneaks in, is quite insidious,” she says.
She adds there is much more work to be done to actively promote autism acceptance.
“I’d rather see a world where people can thrive autistically, thrive autistically,” she says.
According to Ly, the two groups may come together for a discussion, but that possibility is still under consideration and would require an apology from Autism Speaks.
“There hasn’t been any meaningful change,” she says. “We don’t want to be tokenized. We don’t want to be the ones used to give Autism Speaks a seal of approval,” she says. “Even with the apology, a dialogue with a diverse group of autistic people is necessary to discuss the years of hurtful rhetoric about autism.”
NEWS 1130 has reached out to Autism Speaks Canada, but has not heard back yet.