Suzanne Wright, co-founder of Autism Speaks, painted a grim picture of what it’s like to be related to someone who is autistic. She referred to autistic people as people who had been stolen away, citing a statistic of 3 million people, while continuing to refer to us as autistic children. I wondered, as I read the editorial on Autism Speaks’ website, what her grandson would think. How she treats him. Whether she presumes competence. It hurt to think about, because I know the way people treat us, especially those who are supposed to love and accept us. Especially our family members. They’ve been sold on the idea that Autism Speaks has shouted from the rooftops, the idea that we are sick, that we do nothing but cause our families heartache. That we are a burden.
Suzanne Wright and Autism Speaks don’t speak for me. This is not the autism that I live. This is not the truth. She an her husband founded Autism Speaks to help autistic people, supposedly, but the general consensus by those truly paying attention is that Autism Speaks does none of that. You don’t help a population of people by searching for a way to eliminate them, and by erasing the voices of autistic people as either too high functioning to count or too low functioning to be capable of speaking for themselves. That 3 million statistic includes all autistic people, from the nonspeaking to the highly verbal. You don’t get to use our numbers and then silence us.
I am not anti research, nor have I ever been. I believe that there may be ways to help the autistic community through research into co-existing conditions that make it difficult to live our lives. I do not believe that Autism Speaks is the right organization to be able to do that. At one time, Autism Speaks might have been able to be reformed. Autistic people have voiced our concern from the start about the tragedy rhetoric. We have lived to see the results of that, the least of which is the low/high functioning dichotomy that silences autistic people.
And some of us have not lived. Some of us have been abused, raped, tortured, killed – at the hands of Autism Speaks and those who believe like them. Autism Speaks is promoting the Judge Rotenberg Center, which if I were on the fence, would be what tipped me over into the anti Autism Speaks camp.
You, Autism Speaks, have dehumanized us. We are entities, not people. Able is says we are incapable of really living, incapable of consent or saying no. Many of us have PTSD as well as being autistic because of the therapy you deem necessary.
You no longer have an autistic person on your leadership. Even parent advocates are withdrawing their support. You should listen and listen carefully. We are not a burden. Our families are not destroyed and my life is not a tragedy.