When I went to the involvement fair, I had a few goals. There were a couple of clubs I wanted to get information about, as well as a class assignment to complete. I also had some things I was trying to avoid: Mainly sensory overload and signing up for way too many clubs. But then I turned and saw something I had hoped never to see: A poster board for a club for Autism Speaks.
For anyone who is unaware, Autism Speaks is an “Advocacy Organization,” who have faced immense scrutiny and controversy since their creation in 2005. Their mission statement includes, “promoting solutions, across the spectrum and throughout the lifespan, for the needs of individuals with autism and their families through advocacy and support.”
This sounds all well and good, but the organization, unfortunately, doesn't live up to this mission. Autism Speaks has consistently perpetuated harmful stereotypes about autistic people. They support the idea that autistic children lead to divorce, which has been proven false. Autism Speaks has also faced criticism from the autistic community over its search for a “cure” for autism. Many autistic people like myself don’t want a cure; we want basic respect and to be treated like people, not mistakes.
This is made even worse by their “Hundred-Day Kit”, which talks about parents going through the stages of grief after their children are diagnosed as autistic. The five stages of grief are for death. When Autism Speaks uses them about children being autistic, it supports the idea that having a child like me is comparable to having a child die.
Autism Speaks also promotes harmful therapies like Applied Behavior Analysis, also known as ABA. They promote this “therapy,” saying, “the goal is to increase behaviors that are helpful and decrease behaviors that are harmful or affect learning.” But despite Autism Speaks’ endorsement, many autistic advocates say that ABA is incredibly harmful. A former ABA therapist’s blog post from 2017, “I Abused Children For A Living,” explain many of the reasons these practices are considered abusive by autistic people. She talks about how she was told to show no empathy for children who were overstimulated or distressed because that would “only reinforce the behavior.” Many autistic people see ABA as trying to make them behave like neurotypical people, which both doesn’t work and is excruciating for someone who is autistic. And yet Autism Speaks continues to wholeheartedly endorse it.
Despite all of these things, many people continue to support Autism Speaks, including this club at UConn. The club, called “Autism Speaks U, UConn,” says that their goal is to “further the mission of Autism Speaks” and to “positively affect the lives of those who are a part of the autism spectrum and their families.” But if this club is really committed to helping autistic people and their families, they should listen to Autistic advocates and realize that Autism Speaks is harmful. Instead of partnering with them, I would love to see this club be sponsored by the Autism Self Advocacy Network, which is run by autistic people for autistic people and is considered to be a much better organization.
In the end, autistic people aren’t asking for much. We’re asking for basic decency and the same kinds of respect that people offer neurotypical people. Beyond that, we want to not have to listen to people who are not autistic - Autism Speaks has only two autistic members on their board out of 26 people - act as though our lives are worse than death, as though we’re broken things that need fixing.
Advocating for autistic people is an important issue, but doing it wrong is so much more harmful than not doing it at all. Autism Speaks doesn’t speak for autistic people; we speak for ourselves. We just need people to listen.
Ashton Stansel is a campus correspondent for The Daily Campus. He can be reached via email at firstname.lastname@example.org.