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.

Wednesday, February 19, 2014

Education and services, by Autistic people, for Autistic people.

You can thank Emily's (Mosaic of Minds') recent tweet for inspiring this post. She asked about what autism education and services designed by autistic people would look like. I'm autistic, I have opinions on what parts of this should look like, and I'm answering!

The first bit I want to say is relevant to the tweet I made pretty much when I saw hers:
There'd be supports for executive functioning issues that also allow for the decision of "I'm not doing this right now."
That's got two main parts in it- executive functioning supports are important because a lot of autistic people have executive functioning issues. I know I have them. For me, it means I'm really bad at independently switching from one activity to another. If I'm writing, I'll probably be writing until interrupted or distracted by something. The same thing goes for browsing the internet, playing games, reading, and pretty much anything. An Alyssa in activity stays in activity until acted upon by an outside force. Noticing that I'm hungry or thirsty is less likely to happen during activity.

Given those issues, it's a really good idea to have someone who can help give me the push to switch to doing a different thing. This is where allowing for the decision of "I'm not doing this right now" gets important. Sometimes when I get interrupted, it's not actually a good idea to switch things. Maybe I'm in the middle of a breakthrough. Maybe I just don't want to do the other thing right now and know it can wait a bit longer. Maybe I don't have the energy to do it as well as it deserves to be done. Maybe I don't have the idea for the thing yet. There's a lot of reasons that I could not want to switch to a given activity right now, and while I need help initiating the switch, I also need to be able to say "I'm not switching right now" or "I'm not switching to that right now." That's both for practical reasons and for autonomy reasons. Disabled people should have the same autonomy as everyone else, which in the case of students generally means the ability to choose not to do the homework and take the consequences of that. It also means the ability to choose to talk in class/not pay attention and take the consequences of that.

Teachers would actually know that most autistic people have sensory processing issues. One of my aunts works in a classroom that has quite a few autistic kindergartners, and she didn't know that after working with a couple years of these kids. (Which kids changes every year, like usual kindergarten.) Um. How did no one tell you this? I'm not blaming her for not knowing, because you can't know stuff if you've never encountered it and no one teaches the teachers this stuff it seems, but, um, the fact that she didn't know is worrying. So: teachers should know that most of us have sensory processing issues and that most of us have some sort of movement/coordination issue.

They would also quit it with the idea of fading supports for its own sake. Some people need certain supports and fading the supports that allow us to do stuff for the sake of "independence" doesn't actually end with us being independent. It ends with us not being able to do the things. Along the same lines, they'd actually believe the words "I can't do this." I talked about this about a year and a half ago under the title "Presuming Competence." Neurodivergent K wrote about it too, with examples and everything. It's important. And like K and ischemgeek both, if it can be outstubborned, I'm probably going to outstubborn it. You might not even know that there was a problem, because I am very good at outstubborning things. I've gone to the ER with injuries where the doctors were talking about prescribing the higher-power opiate type pain-killers and left with only the antibiotics I needed for the fact that I got bitten by a pig. I then proceeded to go to an agricultural fair and walk around and go on rides. My teachers knew I got injured, but I didn't miss any school and I was never late to class and I actually started riding my bike to school again later that same week. I am very good at outstubborning things. But that doesn't change the fact that there are some things I can't do. I don't start asking for help until well past when I need it, because it's always this reaction that I should be able to do it, but no. It does not work like that. I ask for help because I need help.

And communication. I can usually do verbal/vocal language. That's different from being able to get my needs met that way. Teachers would be aware of the difference between "fluent in requesting" (thanks Julia for letting me know it just means the ability to use the "I want _____" structure, which I can do) and actually being able to ask for things that we want or need when we want or need to. Of course, if autistic people designed the system, we'd probably have given a different descriptor to the ability to use that linguistic structure because that's not what fluency generally means. Dump the terms that are kind of doublespeak. There's already far too many of them in disability/autism services/care type stuff. 

Also along the lines of communication, alternative and augmentative communication is really important. That's things like picture cards, text-to-speech, eye-gaze tracking, typing, and more kinds of things than I could pretend to know about. For me, typing on a typical keyboard and then having a text-to-speech function is enough. But for some students, it takes a lot of trying different things, and it takes knowing that even if the skills we think of as prerequisites aren't there communication can still happen. (A lot of the stuff people think of as prerequisites for communication devices are actually learned really well by trying to use the devices.) Pretty sure the writer of this wasn't autistic, but it's a good post and makes the points I want to about choosing types of AAC.

The other AAC thing, which ties back in with "knowing the structure doesn't imply always being able to communicate the thing," is that even people with oral speech can benefit from AAC. Speech goes kaput on me sometimes. Other times speech is mostly working but it's hard enough to initiate the interaction that way or ask for what I need that way that it's really a much better idea to type. Certain kinds of thinking I can't keep up while also saying the words I'm thinking of in real time, but I can sometimes type the words in almost real time. I'm actually a really good example of someone with lots and lots of communicative oral speech who still needs AAC because I can't do all the things I need to orally.

I'm sure there are more things I'd think of given time, but my brain is tired now and this is long enough for one post I think. So here, a start on "how one autistic person would design/change autism supports and services."

2 comments:

  1. So much win for this. I love this: "There'd be supports for executive functioning issues that also allow for the decision of "I'm not doing this right now."

    This is why I had so much trouble at the university. I could not handle having a cold or flu and school work. Could. Not. Handle. The slightest amount of help and compassion from a teacher made all the difference in the world. I was never lazy, just submerged and in need of supports. We can make the world better for the next generation.

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