Trigger warning: ableism
People magazine has published an article on Bob and Suzanne Wright, the founders of Autism Speaks, describing them as “heroes” who “crusade” and “battle” against autism. The article quotes Suzanne Wright as saying, “We’ve given this voiceless community a big voice.” The rest of the article describes how Autism Speaks has helped the parents of Autistic children, with no mention of the effect the organisation has had on actual Autistics, or how we feel about the ‘help’ they’ve given to nonautistic parents.
There are multiple things wrong with Autism Speaks, but I want to write about their battle metaphors and how they said we are voiceless.
The People article isn’t the first time Autism Speaks has talked about autism like it’s something to fight. In their 2009 I Am Autism video, the voice representing the family members of Autistic people says to ‘autism’,
“We will spend every waking hour trying to weaken you. We don’t need sleep because we will not rest until you do … We are a community of warriors.”
In 2013, Suzanne Wright wrote about calling the “Army, Navy, Air Force and Marines” and using “every piece of equipment ever made” in response to the “crisis” that is the existence of Autistic people.
But ‘autism’ means me. It’s the way my brain works. It’s the way I perceive the world, the way I think, the way I interact with people, speak, move, and express my emotions, it’s my values and priorities. My autistic passions define the phases of my life. Autism is so thoroughly mixed in with everything else that makes me who I am that it can’t be separated out.
I’ve tried to imagine what my life would be like if I wasn’t autistic. The nonautistic person who might exist in my place would probably have the traits that run in my family: we’re all nerdy, shy and intellectual. She would grow up in the same culture and would probably have the same gender and sexuality. But beyond that I can’t imagine it, because she’d be a stranger. Nonautistic people are not identical, so you can’t just remove autism and keep a whole person, you have to invent a new personality.
So I’m not a person with autism, nor do I have autism. It’s not something a shy, nerdy stranger carries around in a backpack. And I’m not living with autism. It’s not a shadow-person who lives in this stranger’s house. Autism is me. I am Autistic.
So anything you say about autism, you say it about me and about all Autistic people.
When you say I suffer from autism you say I suffer from myself.
When you talk about beating autism you mean beating me.
When you call autism an epidemic you mean an epidemic of people like me.
When your goal is preventing autism you wish I had never been born.
When you speak of curing autism you speak of killing me.
When you crusade against autism you crusade against me.
Autistic people have voices: we tweet, we blog, we write books and we organise protests. Nonspeaking Autistic people often make their voices heard through written or signed language, and people who don’t communicate through language at all have voices too, because behaviour is communication.
Autistic people aren’t voiceless, but Autism Speaks tries to make us that way. They are the dominant autism charity in the United States, but have no Autistic people in positions of power. Autistic people have tried multiple times to get Autism Speaks to listen to our concerns, but the organisation has yet to change. In 2013, John Elder Robinson, who was on the Autism Speaks science advisory board and the only Autistic person to ever be in a position of power in the organisation, resigned because his “words and efforts have had no real impact on the beliefs of the actual leadership of the organization.”
In 2008, Autism Speaks threatened to sue an Autistic teenager for making a parody of their website. In 2014 they helped to block a piece of legislation that could have resulted in more Autistic people being consulted about research about us and the training of people who support us. Recently they disabled the review feature on their Facebook page after a lot of Autistic people left negative reviews.
And Autism Speaks and their supporters claim that any Autistic person who is able to criticise them doesn’t have ‘real’ autism, and therefore that what we say doesn’t matter. Even though many Autistic people have had to work hard to be able to communicate the way they do. Even though the people running Autism Speaks don’t have ‘real autism’ either. Even though the awful things Autism Speaks says, they simply say of ‘autism’, and they use an ‘autism epidemic’ of 1 in 68 to make people fear us: that means they are talking about every one of us. I want them to shut up.