Trigger Warning: Ableism, "cure" talk, reversing symptoms of autism/recovery
Someone asked if there was any difference from outside besides just "semantics."
I could get into how semantics is word choices and word choices matter, but I've talked about words mattering. I've talked seven times about Autistic versus With Autism, and I've got another you haven't seen about capitalizing the A in Autistic. Words mean things. Semantics actually matter.
But that's not the point.
The point is that there are huge concrete differences between empowering Autistic people with coping skills and trying to reverse symptoms or traits of autism.
When you are trying to reverse the symptoms, oral speech at all times is key, and confiscating AAC devices in an attempt to elicit speech is acceptable on the off chance that it might work. (It won't. In fact, AAC devices seem to help people learn oral speech.)
When you are trying to provide coping strategies, any sort of AAC is a huge gain, and oral speech, while certainly a useful skill, does not have to be the be-all end-all of communication. Typing is fine. PECS is fine. A Dynavox is fine. Proloquo2Go is fine. An Autistic adult who can usually speak typing when under stress is a coping mechanism, not a behavior to eliminate.
When you are trying to reverse the symptoms of autism, preventing stimming is a goal. The events of "Quiet Hands" may seem acceptable. (They aren't, and they never were.)
When you are trying to help a person learn coping strategies, you suggest fidget toys they may be able to use in class. You might even let them sew in class (that's what some teachers did for me.)
When you are trying to reverse the symptoms of autism, forcing a person to make eye contact is a good idea.
When you are trying to help a person learn coping mechanisms, you mention tricks for "faking" eye contact (nose, forehead) if eye contact even comes up. It might not, because if eye contact is something that we need to think about in order to do it, it's pretty much a thing that's done for other people's benefit, not ours.
When you are trying to reverse the symptoms, bullying about Autistic traits is just another motivator to "fix" this person.
When you are trying to provide coping strategies, it is sign that something is wrong... in how the bullies are acting. Bullying is something to be stopped, and the harm is can and does cause is recognized.
When you are trying to reverse the symptoms, you might care about the cause. The cause might tell you the cure.
When you are trying to provide coping mechanisms? Why an Autistic person is Autistic really doesn't matter. It's not going to help us cope, so why do we care? [Besides curiosity, I mean. Which as a sciency person... yeah curiosity does seem pretty legit to me, but I can get that it's not relevant to this.]
When you are trying to reverse the symptoms, social skills courses that teach us to be silent, that teach us to engage but not to disengage, are considered OK because it makes us act more normal.
When you are trying to help us learn to cope, a social skills course would look vastly different, in ways that could get posts all to themselves. Suffice it to say that engaging and disengaging, following and setting boundaries, accepting and rejecting invitations all need to be covered. And that a lot of it would actually be teaching the abled kids how to be decent, not teaching us how to pass.
There is a difference. From inside, it is between learning to work with your brain as opposed to working to defeat your brain and pretend it is not wired the way that it is. From outside, it is between trying to make a person appear more neurotypical and trying to help a person work with the skills they have and the skills they can learn as well as they can. If you don't get that difference, if you think it is simply semantics, you may well be doing the first and mistaking it for the second. The first, trying to reverse the symptoms? It's kind of the default expectation of most treatment/therapy/education right now.
Be careful, because there is a difference. It is, at a very real and visceral level, the difference between holding a person's hands down in tacky glue as they cry and helping them find a way to stim and do other things at the same time. Or even realizing that we can stim and learn at the same time, that "table-ready" and "ready to learn" are not the same, that neither is prerequisite to the other.
We should be aiming to empower both individuals with autism with the skills to cope in the world and non-autistic individuals to accommodate autistic differences, not to reverse the symptoms of autism.That was the final sentence in ASAN's response to the study about some children seeming to "recover" from autism. (I presume they are quoting it from one of their referenced papers, since it's using person-first language and ASAN doesn't usually do that, but I'm honestly not checking that right now.)
Someone asked if there was any difference from outside besides just "semantics."
I could get into how semantics is word choices and word choices matter, but I've talked about words mattering. I've talked seven times about Autistic versus With Autism, and I've got another you haven't seen about capitalizing the A in Autistic. Words mean things. Semantics actually matter.
But that's not the point.
The point is that there are huge concrete differences between empowering Autistic people with coping skills and trying to reverse symptoms or traits of autism.
When you are trying to reverse the symptoms, oral speech at all times is key, and confiscating AAC devices in an attempt to elicit speech is acceptable on the off chance that it might work. (It won't. In fact, AAC devices seem to help people learn oral speech.)
When you are trying to provide coping strategies, any sort of AAC is a huge gain, and oral speech, while certainly a useful skill, does not have to be the be-all end-all of communication. Typing is fine. PECS is fine. A Dynavox is fine. Proloquo2Go is fine. An Autistic adult who can usually speak typing when under stress is a coping mechanism, not a behavior to eliminate.
When you are trying to reverse the symptoms of autism, preventing stimming is a goal. The events of "Quiet Hands" may seem acceptable. (They aren't, and they never were.)
When you are trying to help a person learn coping strategies, you suggest fidget toys they may be able to use in class. You might even let them sew in class (that's what some teachers did for me.)
When you are trying to reverse the symptoms of autism, forcing a person to make eye contact is a good idea.
When you are trying to help a person learn coping mechanisms, you mention tricks for "faking" eye contact (nose, forehead) if eye contact even comes up. It might not, because if eye contact is something that we need to think about in order to do it, it's pretty much a thing that's done for other people's benefit, not ours.
When you are trying to reverse the symptoms, bullying about Autistic traits is just another motivator to "fix" this person.
When you are trying to provide coping strategies, it is sign that something is wrong... in how the bullies are acting. Bullying is something to be stopped, and the harm is can and does cause is recognized.
When you are trying to reverse the symptoms, you might care about the cause. The cause might tell you the cure.
When you are trying to provide coping mechanisms? Why an Autistic person is Autistic really doesn't matter. It's not going to help us cope, so why do we care? [Besides curiosity, I mean. Which as a sciency person... yeah curiosity does seem pretty legit to me, but I can get that it's not relevant to this.]
When you are trying to reverse the symptoms, social skills courses that teach us to be silent, that teach us to engage but not to disengage, are considered OK because it makes us act more normal.
When you are trying to help us learn to cope, a social skills course would look vastly different, in ways that could get posts all to themselves. Suffice it to say that engaging and disengaging, following and setting boundaries, accepting and rejecting invitations all need to be covered. And that a lot of it would actually be teaching the abled kids how to be decent, not teaching us how to pass.
There is a difference. From inside, it is between learning to work with your brain as opposed to working to defeat your brain and pretend it is not wired the way that it is. From outside, it is between trying to make a person appear more neurotypical and trying to help a person work with the skills they have and the skills they can learn as well as they can. If you don't get that difference, if you think it is simply semantics, you may well be doing the first and mistaking it for the second. The first, trying to reverse the symptoms? It's kind of the default expectation of most treatment/therapy/education right now.
Be careful, because there is a difference. It is, at a very real and visceral level, the difference between holding a person's hands down in tacky glue as they cry and helping them find a way to stim and do other things at the same time. Or even realizing that we can stim and learn at the same time, that "table-ready" and "ready to learn" are not the same, that neither is prerequisite to the other.
You handled this subject very thoughtfully. I am still stunned at the original comment implying that only behaviors seen on the outside are important - a lack of concern that we are talking about humans.
ReplyDeleteI missed the original comment and I'm glad.
ReplyDeleteI came to read this post aftre skyping with my boyfriend. At one point, I found a new way to move my hands on my face that felt really good and I got focused in on it for a moment.
"What does that mean?" my boyfriend, used to me signing the same words in ASL as I talk to him, asked.
"It doesn't mean anything. It just feels good. Here try it," I suggested.
He tried.
"No, like this. Your index finger goes here . . . " he imitates. "Now use it like a hinge as you move the rest of your hand like this." Open. Close. Open. Close.
He hinges his hand on his face.
"Doesn't that feel great? Couldn't you just do that for an hour?" I ask.
"Maybe . . . I don't know . . . " he is unsure. But still hinging his hand on his face. Open. Close. Open. Close.
"Congratulations," I tell him. "You're autistic now."
We both laugh, but it is more than a joke. It is a level of acceptance. He doesn't think his girlfriend is weird. He doesn't think she looks funny. He is curious, and even willing to join her in a stim from time to time.
He doesn't want to change me. In the early days, he was nervous about my looking autistic. He wasn't sure how he felt about it. I asked him, "would you be embarassed if you were with me in public and I looked autistic?"
"Embarassed? No." He thought a moment. I trust him to always answer honestly. He knows I would rather hear a truth that makes me cry than a lie that makes me smile. "I would not be embarassed, but I would be concerned. I would feel . . . protective."
He once had a dream that someone was hurting me and he had to stop them. "How can you do that to her?" he cried. "Don't you know she autistic?!?!"
He would never tell me to have quiet hands. He knows the difference between erasing the signs and mitigating the anxiety. He knows which one looks "normal" and he knows which one he prefers for me. He knows he doesn't care how I look (to him, I always look beautiful. How could I not love him when he says that?) He knows he cares how I feel and he knows he would do anything to lessen my anxiety.
And so we sit there on skype for a moment before he goes to have breakfast. Index finger hinged near the mouth. Open. Close. Open. Close. Both of us looking autistic as hell. Both of us connecting to each other on a level deeper than words. Nothing here needs therapy. Nothing here needs healing. Nothing is wrong with looking autistic as hell.
Thank you for your post, Alyssa. They are things that need to be said, again and again, need to be heard, need to be understood. Brick by brick, you are building a better world.