The Future of Autism
“You should do a blog about why you hate Autism Speaks,” said Hannah.
“Every time I think about those assholes I go crosseyed and black out,” I said.
“I think it’s important,” she said. “I didn’t even know they were evil until you explained why.”
“I don’t think I could write articulately about the subject. It just pisses me off too much.”
“If you can talk about it, you can write about it.”
Well, all right. Let’s give it a shot.
I went to the website of Autism Speaks and looked up their mission statement. I also looked up the mission statement of Autism Speaks Canada, because I’m Canadian. The mission statements are pretty much the same, so for my purposes I’ll be referring to the one found on the international website.
It starts by stating, “At Autism Speaks, our goal is to change the future for people who struggle with Autism Spectrum Disorder.”
People do not struggle with Autism Spectrum Disorder. They struggle with environmental and attitudinal barriers. With proper accommodations, a person with autism can lead a fulfilling and successful life. Hans Asperger recognized this in the 1940s, and it has been reconfirmed countless times since then.
They continue: “We are dedicated to funding global biomedical research into the causes, prevention, treatments and a possible cure for autism.”
Autistic people don’t have a good history with biomedical research- especially classically autistic folk. We’ve been institutionalized and experimented on since Leo Kanner’s work in the 1940s. This treatment is dehumanizing, and has reduced the quality of life for people with autism. And again, Autism Speaks seems to believe that the problem is within autistic people. It is not; the problem is around us.
Also, the cause of autism has been determined to be primarily genetic. There is no prevention. There are many treatments available to increase interpersonal skills, and therapeutic services are available for people who have been driven crazy from being constantly regarded as a freak show or laboratory specimen.
A cure is probably impossible, and in any case is unnecessary, because there isn’t anything wrong with us.
“We strive to raise public awareness about autism and its effects on individuals, families, and society: and we work to bring hope to all who deal with the hardships of this disorder.”
They cannot raise public awareness about autism due to their inadequate understanding of the disorder. All they are capable of doing at present is spreading misinformation, which causes a decrease in the quality of life of people with autism. They continue to underline their lack of understanding by referring to the hardships of the disorder. The primary hardship we suffer from is the attitude that we are broken and in need of repair.
They continue: “We are committed to raising the funds necessary to support these goals.”
Again, this is a significant problem because they don’t know what they’re doing.
“Autism Speaks aims to bring the autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis.”
I don’t know what they mean by “autism community”. I looked up their Board of Directors, read the biographies of each of them, and none of the people on the board identify as being on the spectrum. Several of them have children with autism. So this becomes an ideological question: who is part of the autism community? Personally, I believe that the community consists of people with autism and their Maintainers. Autism Speaks appears to have a different understanding: that the autism community consists of parents who have been blinded by fear and manipulated with misinformation.
Look, I don’t understand what it’s like to be a parent of a child with a disability, but I understand what it’s like to have autism, and I can assure you that it’s not that scary. I know an awful lot of people with autism, and the vast majority of them are successful- according to their personal definition of success- and happy.
So, returning to the mission statement, there is no “global health crisis”.
The mission continues:
“It is our firm belief that, working together, we will find the missing pieces of the puzzle.”
You could start by actually listening to us, instead of doctors and researchers who don’t have the disorder. I’ve only ever met two or three people with autism who have wanted to be cured, and that was as the result of being told repeatedly throughout the course of their lives that they were fucked in the head. I reiterate: the problem is environmental and attitudinal.
One of the wonderful things about being human is that we all get a say in determining what the future looks like. What myself and a lot of other activists are trying to do is create a future for people with autism. Autism Speaks is trying to create a future without autism.
So what’s it going to be?