Note For Anyone Writing About Me

Guide to Writing About Me

I am an Autistic person,not a person with autism. I am also not Aspergers. The diagnosis isn't even in the DSM anymore, and yes, I agree with the consolidation of all autistic spectrum stuff under one umbrella. I have other issues with the DSM.

I don't like Autism Speaks. I'm Disabled, not differently abled, and I am an Autistic activist. Self-advocate is true, but incomplete.

Citing My Posts

MLA: Hillary, Alyssa. "Post Title." Yes, That Too. Day Month Year of post. Web. Day Month Year of retrieval.

APA: Hillary, A. (Year Month Day of post.) Post Title. [Web log post]. Retrieved from http://yesthattoo.blogspot.com/post-specific-URL.

Friday, November 18, 2016

What's Apraxia? Oh. #AAC

Today I went to the Assistive Technology Conference of New England. My advisors brought me there. It was pretty cool. I had some conversations that I was glad to have. One of the sessions I attended was Kate Ahern's session on literacy and Augmentative and Alternative Communication (AAC). Pretty early on, she defined apraxia and noted that many AAC users and generally folks who can't necessarily talk have it. So here's how she described it:
Apraxia is "an inability to perform learned movements on command even if understood, there is a willingness to perform and the skill has been previously learned."  It's "worsened by anxiety, illness, stress, and demands."
So here's the thing. I know how to speak. In fact, I know how to speak two languages, English and Mandarin Chinese. My speaking ability varies from "no mouth sounds are happening" to "clearly fluent in the current language." A whole lot of in-between possibilities also happen, including fluent speech while needing someone else to initiate the conversation/prompt the speech, fluent-sounding scripting but no off-script speech, and slow speech that gets pushed out one word at a time.

And I have woken up non-speaking (that I know of) once since learning to speak: I was sick that day. Stress increases the likelihood that speech will go out, and that's both "doing too much" stress and "here are sensory processing issues in my faaaace" stress. Flashing lights will make speech go kaput pretty quickly, because repeated blows to the eyes are not fun for anyone and that's what flashing lights feel like to me.

Now, apraxia is describing a functional thing, not an internal why is this happening thing, so as great as it is to have the word (hey, formal sounding words are useful when dealing with formal sounding people) this doesn't really tell me new things on its own. It is, however, a useful word to look for research and narratives on because those might have information about the why's and how's. They also might have information about the "what to do now that you know this is a thing" side, which would be handy. I have a pretty good handle on what to do when speech isn't working (write, type, gesture, grab a whiteboard marker so that I can write, etc) but more possibilities means more versatility and more back-ups when the first idea doesn't work out.

It's also something where I can (and do) think about the rhetoric. How do we talk about apraxia? Kate calls it something neurological, and explicitly says that it's not laziness and not "a behavior" (I think it is partially detected from behavior in the literal sense that we're not actually doing the thing, but it is definitely not "a behavior" in the sense that behavioral therapists like to talk about. Not that I think the concept of "a behavior" in that sense is entirely coherent anyways.) But when describing the sorts of activities she suggests, she also says that we should make it worth fighting the apraxia.

So what does it mean when we talk about apraxia as a thing that we fight? We just said it's not a behavior, not laziness, that it's a neurological thing, what does it mean when we call this a thing you fight and could beat or lose to? And it's not just apraxia where people have thought about this. Cancer gets this treatment. Autism gets this treatment. Actually quite a few autism metaphors get discussed in Loud Hands: Autistic People Speaking (It's an anthology, Julia is the editor and not the author, IDK why Julia's listed as the author on Amazon.) Or even generally as an external force, whether or not it's one we're fighting? The mind isn't separate from the body, and the neurological quirks aren't separate from the mind. This isn't something I've thought about nearly so deeply as with my (part 2 still coming I swear) dive into aphantasia rhetoric, but it is something where I'll ask the question.




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