When autistics say that Autism Speaks (A$) hurts us we are not just saying it. We are stating a fact, a very real consequence of the hateful rhetoric.
When A$ says that families are not living, that they are only existing from one moment of despair to the next; when autistic kids are painted as wild screaming beings, breaking things and breaking up marriages; when co-occurring conditions that are not autism, like GI issues and seizures, are used as examples of a suffering and tragic existence; this rhetoric causes real pain to autistics and their families.
Those words are used by A$ to give a sense of urgency to their fabricated idea of “epidemic”. A$ uses the number of diagnosed autistic children to project a dire future, an expensive future. But what is not mentioned is that many of those children will grow up to be productive members of society. Maybe most of them could have a better chance to succeed if more investments in assistive technology and education were available. Maybe A$ could help by using more of its money to help autistic children grow up to become happy autistic adults, instead of spending it on researches to prevent people like me to be born.
My father responded to a group of people who were defending A$ and its co-founder, Suzanne Wrights’s rhetoric. He made great points and he supports us. But he made a couple of mistakes:
Autism does not cause my medical conditions.
A$ is spending most of the money on research into causation and prevention. They don’t want to help us succeed. They want to prevent the birth of autistics.
Some of the comments he got were appalling to me. Parents who support A$ but seem to know nothing about autism or what happens to us when the hateful rhetoric reaches a lot of people. Some of the comments were like these:
“Personally, I think Suzanne Wright was, well, right”
I have something to say to them.
Do you agree with Suzanne Wright that I am a burden on everyone?
Do you agree that life with an autistic is “just existing”?
If you do, you are not doing the best for your child. You are devaluing him or her, wanting your idea of a “better” version of them.
And I am what you insist on calling “low functioning”, or as I say, Temple Grandin without the privilege of wealth and her squeeze machine.
A$ spends more money in dinner parties than in services. Do you call this help?
“What wouldn’t I give not to be envious of others with or without ASD being able to go off to college, have friends, not worrying about who will care for my almost adult child when I am gone with the same amount of respect and love”
You are out of touch. Many people like me attend college and live on their own, with helpers, like you might when you get old. Why is it ok to have help when one is old and not when we are young?
As for concern about who will care for your children, this is legitimate and needs planning. But as for respect, many of you are already disrespecting your children by not valuing who they are and by not allowing them to speak for themselves.
Your son is not sick. Autism is not a disease. Whatever you think is sickness is probably something that is not autism.
If you agree with Suzanne Wright you probably agree that autistic people should not be eligible for organ transplants, since we are “tragically suffering” and our families “don’t live, they just exist in despair”. You know this happens. It happened several times. You know that at least one autistic woman was bluntly told that she should not continue to seek medical care and that she should simply die. She was told this by a doctor, while at a hospital.
A$ rhetoric is dangerous to me and to your children. They are powerful and people tend to listen to their marketing. And then we die. Some parents killed my people and A$ defended the murderer. We are usually too difficult, the poor murderer had no choice (sarcasm).
A$ says we are an epidemic but when autistics speak up they say we don’t count. They refuse to include us. According to them we can inflate the number of cases but we are not really autistics.
By defending A$ when we speak up against them, you are like privileged white people saying racism is over; or a bunch of men deciding women’s issues. It is not easy being disabled in society. We are the ones who know that. Families do not feel this like we do, no matter how much you say you “know”. By denying us a voice, by saying that we “don’t know how it is”, you are behaving like the examples I gave above. Why don’t we see families of children who have other disabilities speak the (awful) way some parents do about their autistic children? I have friends who have cerebral palsy and some of them need much more physical assistance then me. Yet, their parents don’t say it is ok to talk about them as if they are not whole human beings. They accept their children and plan for the future, like any parent would do. You are stuck on the idea that we are not who we are supposed to be. This is offensive. I am me and I am proud. You should feel the same about your own child.
I know you will say that how dare I say you don’t love your child. Well, show me. Accept your child. Stop demonizing autism because when you do, you demonize the autistic. There isn’t a way to separate autism from us. Help your children speak up and listen to them. Ask them what they think about the A$ rhetoric. And be patient. Everyone understands things, feels things. We live in this world, even when some of us cannot (yet) communicate. Invest on your child’s education and find a way to help them communicate in a way you understand (something A$ is not doing). Only then you can actually be a good advocate for your children. So far, you are advocating for understanding of your own fears and prejudices.
My father makes another mistake, although he means well. I am not here to teach anyone. I am here, in this world, to live my life. I am nobody’s “inspiration”. I am, though, an activist and I will fight for the rights of every autistic, and every disabled person, the best I can. And my community is behind me and beside me on this. When I need them, they will be with me too.
What my father and my mother did right was to accept me, believe in me, stop thinking about curing me and start fighting to provide me with the best education and services. They fought for me, not against me. It wasn’t always easy and I know that, sometimes, they felt discouraged. But they saw me as a whole human being, deserving the same happiness and fulfillment they had dreamt for me before I was born.
A$ says this is not possible. Suzanne Wright believes families need to resent their autistic children because she resents her grandson. You buy into this because you do not accept your child. This is not because of autism. It is because of you.