If you do not know, Autism Speaks is one of the foremost charities for autism. It aims to find a cure for autism, all the while researching treatments, prevention, and possible causes. If you were to go on their website, you would see all of this and that their motto is “It is our firm belief that, working together, we will find the missing pieces of the puzzle.” Sounds like a pretty decent charity, right?
Yet many autistic individuals, myself included, do not support Autism Speaks. Many of us hate it, actually. When I mention this, people ask me why. Don’t I want people to be aware of my disorder? Isn’t this charity a good thing?
Well, yes. I want people to be aware of my disorder. I just want people to see all sides of how I’m affected, not just the negative.
Autism Speaks focuses only on the negative, making videos such as I Am Autism, which has a disembodied voice identifying itself as autism saying things like “I will plot to rob you of your children and your happiness,” and Autism Everyday, which only focuses on the things that parents of autistic children find to be a burden on them. At one point in Autism Everyday, a mother admits to fantasizing about driving herself and her autistic child off a bridge just because she’s tired of dealing with her autistic child.
The organization also supports Applied Behavior Analysis Therapy, which uses rewards and punishments similar to animal training to get children to act more normal, sometimes even using shock treatment as one of said punishments. One such organization that uses shock treatment for ABA therapy is the Judge Rotenberg Center, which Autism Speaks has allied themselves with. I have met people who have been given shock treatment, for varying reasons, and I can tell you with all my conviction that the results are the most heartbreaking thing I have ever seen. I cannot in good conscience support an organization that supports shock treatment.
On top of that, Autism Speaks doesn’t even have actual autistic individuals on their board, and they never have. The highest leadership position held by an autistic individual was John Elder Robinson, who was on their science advisory board. He resigned in 2013 because despite his efforts, the organization did not listen to him when he told them they were harming those they claimed to help. Autism Speaks continued to speak over actual autistic individuals.
There are many, many, many more flaws with Autism Speaks, but listing them all would take up a lot of space and a lot of time, and probably the most relevant to autism, a lot of my energy. I may look like I’m high-functioning, but I’m still autistic. This article took a lot of my energy to write because it was so close to home. But it’s not bad that this article drained me. Yes, I’m autistic. Yes, I have days where I struggle because of it. But no, I do not wish I wasn’t autistic.
If I wasn’t autistic, I would not be writing this piece. If I wasn’t autistic, I wouldn’t be the person I am. I don’t want a cure, I don’t need a cure, and Autism Speaks can try to speak over me, but I will not let them. Autism Speaks does not speak for me.