By MIKE KING
Madeline Mays should feel proud for standing up for her brother and trying to make the world a more accepting place for him (June 22 letter). I appreciate it. I’m an autistic adult, but I wasn’t diagnosed until five years ago, when I was 34. At her age, I was still getting bullied, which sucked. The only way to prevent it is to change people’s attitudes.
I would tell Madeline that she’s done a great job of using research skills to back up her points, and she chose the right sources: medical authorities, major charities and the New York Times. Many adults struggle to do this correctly, and it’s a major social problem.
But authorities aren’t right about everything, either. A lot of autistic people don’t like Autism Speaks, because it takes the perspective of doctors and family members over autistic people themselves. Many autistic people feel strongly that ABA therapy is wrong, and that makes a lot of people upset because they see it as helping. There’s a big difference in world views.
I’d tell Madeline about the neurodiversity movement, which is part of the disability rights movement. Autism is a disability, but we use the “social model” to think about disability instead of the “medical model.” Basically, we’re all connected and everyone needs help, but social norms make some kinds of help a problem. Right now, we’re disabled by how society reacts to us, but we can change society to be more accommodating. Her letter is part of that.
My suggestion would be to learn about autism issues from the Autistic Self-Advocacy Network (autisticadvocacy.org) instead of Autism Speaks.
Autism affects our whole brains, including how we move and express feelings. It’s easier to understand the body language of someone who moves like yourself. For me, it feels obvious why someone would rock back and forth or flap their hands, but sometimes people look at me and think I’m angry when I’m not.
This causes a lot of misunderstandings and leads to the wrong idea that autistic people don’t have empathy at all. Really, it creeps people out that we don’t “mirror” their body language, and then they make negative assumptions about us, and that’s disabling. Imagine going through life with people assuming you’re untrustworthy because eye contact makes you uncomfortable, which you can’t help. It’s stressful.
Madeline mentions that we do things differently. It’s not necessarily because we’re creative. I’d explain that autism is related to epilepsy. We don’t understand the exact cause, but it seems like some of our brain cells are more excitable. That helps with memorizing things, but it also means that we’re sensitive to overload … and then we shut down or melt down. Our senses are more intense, and we can’t filter out background noise. We like things to be the same because we’re trying to avoid overstimulation.
I’d tell Madeline that her worries about who’ll take care of her brother are political questions. Do we take care of each other as a society? Making autism a burden on families is already a political decision.
Finally, I’d tell her that her brother has an IEP because of the disability rights movement, which succeeded after occupying a federal building in protest. It was called the “504 sit-in.” They couldn’t have done it without the Black Panthers, a group of black communists bringing them meals every day. They had a program giving free food to school children, and that scared the federal government. You can learn more about this in the documentary “Crip Camp.”
All of this matters because Republicans in this very town want to ban schools from teaching that kind of history. Adults spend a lot of time fighting about who controls information.
Mike King is an Oak Harbor resident.