The fact that I need to preface my article in this way is already proof of why this is a problem, but let me start off: don’t pity me, don’t infantilize me, and don’t compliment me for being “high-functioning” if I tell you I’m autistic.
I am. It happens to be the way that my brain functions. And no, I didn’t get it from being vaccinated or drinking milk or whatever terrible idea some company is pushing to scare people. The fact that parents would rather have their children be dead than autistic is frightening to me because it clearly means people do not understand what autism is. Least of all helping in understanding autism is the organization Autism Speaks—you’ve probably seen the blue puzzle piece and the perfect press pictures of moms with their autistic kids with a headline like “How I Learned to Deal With My Child’s Autism.”
Frankly, I’m sick of Autism Speaks speaking for actual autistic people.
There are really no autistic people involved in Autism Speaks—the founders, Suzanne and Bob Wright, are not autistic, and autistic people who were previously associated have rejected Autism Speaks. John Elder Robison, an autistic writer, stated: “I’ve suggested things the organization could do […] but those suggestions have been ignored.”
The Wrights also speak about autism as a problem—which in itself, is a problem. Being autistic can hinder some aspects of my life, certainly, but in the end, it’s just a different way of thinking. In talking about autism, there needs to be a discussion about how to understand and accommodate autistic people, not trying to eliminate autism or the people who have it. In fact, Suzanne often refers to the stories of parents who view their autistic children as problem children, bemoaning the fact that their kid will never be “normal.” Autism Speaks creates fear and stigma around being autistic and that is precisely the kind of narrative that alienates us and leads to ABA or Applied Behavior Analysis.
ABA is surrounded by a lot of criticism—for good reason. It essentially involves punishing autistic people for performing autistic behaviors such as stimming, while putting them in situations that cause undue stress and pain. Szalavitz has said that ABA “rewards compliance” rather than understanding autistic behaviors—ABA has been linked to emotional damage and abuse. Because autistic people are forced to conform to “normal behavior," they are often required to perform behaviors on cue, damaging the independence and dignity of the person undergoing “treatment.” The fact that children are most often subject to this is horrifying.
Even donations made to Autism Speaks rarely go to helping autistic people and their families despite claims—the Autistic Self Advocacy Network reported that less than 4% of their funding goes to Family Service grants and the 32% that goes towards research is devoted to “prevention” of autism. Their financial health was rated as a 2 out of 4 by Charity Navigator. So even if one donated in good will, their money would essentially be going to waste.
Autism Speaks has an unfortunate popularity and a history that has gone uncriticized by many. If you want to help autistic people have a better quality of life, then the Autistic Self Advocacy Network, the Autistic Women’s Network, and Self Advocates Becoming Empowered are organizations that actually strive to do that. We are different, but certainly not a burden, and we should not allow an organization that believes that to speak for us—especially when we have our own voices.
