I made words on Autistic Pride Day. That's a thing that happened.
And I got quoted for Autistic Pride Day, by the folks who make one of my AAC apps. Also a thing that happened.
It turns out I have more words to type about pride as resistance, about unreasonable expectations of indistinguishability, than I typed that day. (How do you write like tomorrow won't arrive? How do you write like you need it to survive? How do you write every second you're alive, every second you're alive, every second you're alive?)
Indistinguishability from one's peers is a root of a really, really nasty plant. It's fruits are use of "loss of diagnosis" as the optimal outcome, It's fruits are considering that a person losing their autism diagnosis, but having anxiety and depression, means having beaten autism. It's something that Neurodivergent K has written about far better than I ever could, with the Indistinguishability series.
Indistinguishability connects to the perception of autism as something external to us. I'm still working out exactly how, but I know the connection is there. I think it looks something like this:
But Autistic Pride as resistance isn't about choosing indistinguishability or neurotypicality or "beating" autism. It's about rejecting the idea that any of those things make good goals. It's about, even and especially as we are told that the best thing we can ever be is "normal," deciding that This is Wrong and that the best thing we can ever be is the version of ourselves that doesn't feel the need to hide. It's about asking:
When the doctors and the teachers and the parents demand indistinguishability, #AutisticPrideDay is an act of resistance. Stim on!— (((Alyssa))) (@yes_thattoo) June 18, 2016
And I got quoted for Autistic Pride Day, by the folks who make one of my AAC apps. Also a thing that happened.
It turns out I have more words to type about pride as resistance, about unreasonable expectations of indistinguishability, than I typed that day. (How do you write like tomorrow won't arrive? How do you write like you need it to survive? How do you write every second you're alive, every second you're alive, every second you're alive?)
Indistinguishability from one's peers is a root of a really, really nasty plant. It's fruits are use of "loss of diagnosis" as the optimal outcome, It's fruits are considering that a person losing their autism diagnosis, but having anxiety and depression, means having beaten autism. It's something that Neurodivergent K has written about far better than I ever could, with the Indistinguishability series.
Indistinguishability connects to the perception of autism as something external to us. I'm still working out exactly how, but I know the connection is there. I think it looks something like this:
- If you can behave in a way that appears "less autistic," then you are, in fact, "less autistic." That's the indistinguishability and behaviorism idea. (Note the assumption that more vs less autistic is a sensible concept. Autism is not a single variable that varies linearly.)
- If you can choose to be less autistic, then you can also choose to be not autistic, thereby beating autism. (Note the assumption that being less autistic or not autistic at all is better.)
- Since it's apparently possible for an autistic person to become less or not autistic, it must be external to who we are. (Note that I don't think autistic people becoming non-autistic is actually a thing. I think faking it can be a thing that often leads to burnout, and that there are some similarities between "converted" lefties and "recovered" autistic people.)
Indistinguishability isn't quite the same thing as neurotypicality, to be clear. When you actually are neurotypical, that's still neurotypicality, but it's not "indistinguishability from one's peers" as written about with autism. Because the expectations get raised when people know a disability is part of the picture (neurotypical kids get to have a bad day, but "indistinguishable" kids will have it taken as evidence that they don't really belong in the mainstream classroom,) feigning neurotypicality is a heck of a lot easier when folks don't know that you're really anything else. That's the comparative safety of being passed off as merely weird... or quirky.
But Autistic Pride as resistance isn't about choosing indistinguishability or neurotypicality or "beating" autism. It's about rejecting the idea that any of those things make good goals. It's about, even and especially as we are told that the best thing we can ever be is "normal," deciding that This is Wrong and that the best thing we can ever be is the version of ourselves that doesn't feel the need to hide. It's about asking:
- Maybe I could stop myself from flapping, but why would I do that?
- Maybe I could push speech to work more consistently rather than typing when speech is wonky, but why would I spend my time and energy there?
- Maybe I could fake eye contact, but why would I do that?
- Maybe I could learn not to jump at the bell, but why would I still my startle?
- Maybe I could make my language less repetitive (Maybe I could... but why?) but why would I do that?
And then it's about answering:
- I won't stop myself from flapping. Flapping is a natural expression, and who I am is not wrong.
- I won't try to reduce my use of typing. I will type when typing works better, rather than waiting until speech is insufficient. Speech is not superior to other methods of communication, and who I am is not wrong.
- I won't fake eye contact. Eye(ball) contact is not natural for me, and who I am is not wrong.
- I won't spend the energy to still my startle. If the bell or the flashing light or whatever else hurts me, people can be aware of this. If it's just a surprise and that's how I react to surprises, that's how I react to surprises, and who I am is not wrong.
- I won't make my language less repetitive. If I'm going to put in the effort to change how my words work, it needs to be for the sake of making my communication more effective, not for the sake of making it seem more neurotypical. Echolalia, palalia, and patterns are part of my natural language, and who I am is not wrong.
Autistic Pride means resisting not only specific demands for neurotypical-passing (neuronormative) performance, but also resisting the ideas behind those demands. Who we are is not wrong.
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Holy cow. I love, love, love this.
ReplyDeleteI think it's really cool how many AAC professionals are on board with autistic rights. The stereotypes would say that they see the 'low functioning' autistics, and so they should think autism is horrible. But AAC is all about enabling the person to tell you what they think, and the people who devote their lives to giving AAC seem to be a self-selected group who really listen to the voices of the people they work with.
ReplyDeleteBesides, when it comes to "indistinguishability", sometimes it involves doing things that are also not neurotypical, such as never startling even when a neurotypical would and being told you have an "under active" startle response that is actually only under active on the outside, or, like Spock, pretending to everyone, including yourself, that you don't have emotions (and no, I don't believe Spock, or indeed any Vulcan, is actually emotionless. All Vulcans really do is cloak their emotions in "logical" language and suppress the ones that cannot be explained by logic, except when they go into heat - then they are nothing but an emotional hot mess until they mate with someone). This doesn't even include the more dangerous things like using eye contact as a means of crying Uncle or hugging everyone you see, including strangers (!). Some of this dangerous stuff is even present in "therapy" for "low-functioning" autistics, like Laurie Basard's "Come here" drill, where she recruits a random person to hold out a treat, say "Come here", and the person comes to the stranger and gets a treat. It does not take a genius to figure out where that would lead.
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