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.