Today, April 2, is World Autism Awareness Day. And all of April is Autism Awareness Month, so here are some things I would like to make sure you are aware of. (Many of us prefer to call it Autism Acceptance Month, because just making people aware of us doesn't seem to help much, and our goal is to be accepted. But it's also clear we have a long way to go just to make people aware, so I'm not going to fight about which name is better today.)
#StopTheShock
The Judge Rotenberg Center in Massachusetts uses painful electric skin shock devices to literally torture autistic children and adults into behavioral compliance. They have a long history of using this device on intellectually disabled, autistic children, but right now appear to be limiting its use to adults (until the current legal issues quiet down?). The FDA banned these skin shock devices in 2014, but JRC sued to be able to continue to use them, and there is an ongoing legal fight to get them banned. JRC is currently the only place in the USA that uses this aversive therapy that is literally classified as torture by the United Nations. The FDA is considering a new regulation to ban the skin shock devices, and your public comment can help encourage them to do the right thing.
ASAN, the Autistic Self-Advocacy Network, is helping carry the #StopTheShock banner. They created a good simple-language explainer with instructions on how to submit a public comment. It's a quick read and won't take long to write a comment and submit it by the end of this month. You can find it here: Take Action to #StopTheShock
OK, now that we have that on your radar, lets look at a few basic things that would really help if you took them to heart.
You don't know anything about autism
The most important thing to be aware of is your own ignorance on the topic. It's likely that you don't understand autism or autistic people, like even a little bit. Even if you know someone who is autistic. Even if you are a caregiver. But don't feel bad about that – nobody really understands autism or autistic people, and that includes the entire field of psychology.
Think of it like how things were about sexual orientation a century ago. Homosexuality was a pathological condition, and people were diagnosed as homosexual and then shunned and mistreated since no one knew what to do with them. It's much like that being autistic today. But I'm hopeful we are at a turning point where society begins to accept neurodiversity the same way we are learning to accept sexual and gender diversity.
You may not think it's your job to educate yourself about autism or neurodiversity. But hey, are you a white person who reads stuff about racism? Or a straight person who reads about queer rights? Or a man who educates himself about women's health issues? Or an abled person who reads about disability? If you can put in the effort for some minorities, why not for autistic people? And if you're not going to put in that effort to educate yourself, please don't pretend you understand autism, either to others or to yourself.
You have to listen to autistic people
Would you approve of a women's rights group that is run by men? A pro-diversity group run by white people? A queer rights group run by straight people? Then why do you keep supporting autism charities that are run by allistic people?
It is standard practice to infantilize autistic people, to discount us as intellectually incompetent and childish, to see us as incapable of understanding or advocating for our own interests. Well fuck that shit. There are plenty of us who see and understand our issues better than any neurotypical person ever could, and we could go on all day about how to improve things. But all the big autism charities are run by allistic people who routinely ignore and talk over autistic people, and constantly fight with us about what is good for autistic people and our community.
We deserve agency over our own lives. Stop treating us like we don't know what we're talking about or that you understand our lives better than we do ourselves.
If you have heard about one autistic person, it's probably Temple Grandin. She's not bad, but her notions are not current and there are many other autistic authors with more up-to-date ideas: Jules Edwards, Eric Garcia, Damian Milton, Devon Price, Nick Walker, Pete Wharmby. And you can find many more here: https://autismbooksbyautisticauthors.com
ABA is conversion therapy for autism
A big issue in the world of autism is Applied Behavior Analysis (ABA). You know that awful gay/trans conversion therapy that brutalizes queer kids to force them to convert to being straight? ABA is that, but for autism. And I don't mean it's kind of similar. I mean it's the same thing, with all the same problems and negative outcomes. ABA was developed by the same person who came up with gay conversion therapy, Ole Ivar Lovaas, who had a lot of issues about boys who didn't act masculine enough for him.
And ABA is just as bad as gay conversion therapy, if not worse. An overwhelming number of children who go through ABA end up damaged and traumatized for life. And the science behind ABA is bad. Over and over, studies show it is not effective and harms children who are subjected to it. If you think gay conversion therapy should be banned, you should also want to ban ABA.
The problem is that ABA is accepted as the standard therapy for autistic kids. It is almost always the only therapy that insurance will cover, and many states mandate that insurance cover it. Many parents of autistic kids support ABA because it is the only option available to them and they don't know any better. And for many of those parents, it does get them some relief because it forces the child to behave, since that is literally what it's for. So autism parents and autistic adults often fight over ABA, with non-autistic autism parents talking over and silencing autistic people.
(Don't get ABA confused with the electric skin shocks used at JRC. Both of those so-called therapies stem from similar attitudes that if you abuse an autistic kid enough they will behave, but ABA isn't quite as obvious about it.)
Autistic people want support, not a cure
The overwhelming amount of research into autism is about the causes of autism and possible cures. First off, that is eugenics, plain and simple, and bad for all the usual reasons eugenics is bad. This research does nothing for autistic people. What we want is research into how to best support autistic people so we can have decent lives. Stop supporting and donating money to autism genetic research programs, and stop working with them too. Start supporting research into how to help autistic people live better lives, preferably research lead by autistic people.
#ActuallyAutistic is not about having a diagnosis
On most social media platforms, autistic people use the hashtag #ActuallyAutistic to indicate when an autistic person is speaking. The "actually" means the person using the hashtag is autistic, as opposed to just knowing or caring for someone who is autistic. It doesn't mean they have an official diagnosis. Most of us in the autistic community think self-diagnosis (or self-determination or some other non-medical word) is valid. Some people need an official diagnosis for reasons, but they are expensive to get and don't provide much if you're over 18. So if you identify as autistic, or are in the process of wondering if you are, you can use the hashtag to show you're speaking from lived experience. And if you are not autistic yourself, you should never use the #ActuallyAutistic hashtag, even to mention a person who is actually autistic - you can just use #autistic for that.
OK, that’s all for today. Thanks for reading and raising your awareness.
