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.

Monday, December 4, 2017

What if they're stimming with the device?

In response to the fact that it is not OK to take someone's communication device away, ever, apparently it is common to ask, what if the person is stimming and (we assume) that's interfering with communication.

There are a few points I want to make in response to that. Some I've seen elsewhere. Some, less so.

  • What would you do if a kid was vocally stimming, with their natural voice, and you thought that was impeding their communication? Still not taking away their voice, right? Even if you think they're doing something noncommunicative with their voice, you're still taking their voice in that example. Never means never. (This is mentioned in the PrAACtical AAC post, but it was also my immediate gut reaction.)
    • Or what would you do if you heard me stimming with my AAC device? Cause yeah, I'm an adult and you know I can communicate and all, but I do that sometimes. Would you consider taking my device? I'm kind of assuming it's a no there because the idea that you might try is a bit too scary for me to look at right now, but why wouldn't you do that to me, if you would to them? (This is somewhat an explanation to my immediate gut reaction.)
  • Keep in mind that communicative echolalia is a thing. In my experience ... yeah, sometimes repeating words or sounds because it feels good is a thing but there's often a meaning. (pickles pickles pickles pickles pickles resulted in my getting pickles, in college. It was also stimmy, as a side bonus.) For those looking for citations on the communicative functions of echolalia, Barry Prizant did some work on that (Prizant & Duchan, 1981; Prizant & Rydell, 1984). I don't trust him on the whole, remember my reactions to Uniquely Human, but communicative functions of echolalia is a useful thing he did.
  • Echolalia, repeating words and phrases is also how a lot of autistic people learn language in the first place. The thing that is how we learn language is not actually a barrier to communication and if this is what's going on, your assumption that this is a barrier to communication is just wrong. Do not pass Go. Do not collect $200.
  • Also, is the babbling stage a thing with AAC use? Cause it usually is with oral speech and it's not successful communication yet but it has to happen in order to get to successful communication later. Exploring language and using it in unexpected ways is part of learning language. (This shows up in the PrAACtical AAC post.)
  • Stimming is great. I am usually stimming in some way. It's not usually vocal because that's just not what tends to work for me, but I am usually stimming. Hence, fidget spinners and blanket pieces. The fact that a person is, in fact, stimming does not mean you should stop them from doing whatever it is they're doing to stim. Suggesting alternative ways of stimming can be OK under some circumstances, but seriously, "they're stimming" doesn't mean "they should stop." Similarly, "it's echolalia" doesn't mean "they should stop."
Academicy Citations

Prizant, B. M., & Duchan, J. F. (1981). The functions of immediate echolalia in autistic children. Journal of speech and hearing disorders, 46(3), 241-249.
Prizant, B. M., & Rydell, P. J. (1984). Analysis of functions of delayed echolalia in autistic children. Journal of speech and hearing research, 27(2), 183-192.

Thursday, November 30, 2017

Self-regulation, AAC access, and arguments that should not need to be

One of the big things with augmentative and alternative communication devices is that you're not supposed to take the device away from the person who uses it. The idea that you don't do that came up in the AAC class I'm taking this semester. The reason that came up is a bit different from the visceral, that's how I talk wtf reaction I have as a part time AAC user, but it came up.

The video was, "AAC in the Classroom for Students with Significant Disabilities: A Progression Strategy From BIGmack to SoundingBoard and Beyond!" It can be found on AbleNet under Ablenet university webinars, registration required but free. This quote led me to respond.
The only time they get a voice is when you give it to them. You need to leave the device with them so they start learning self-control.”
I suppose a student could have a self-control issue? Here's the thing: you have no way of knowing if that's an issue, if taking away the device has been a thing, because a person's natural self-regulation doesn't apply so well in scarcity, even if they already have the ability to regulate themselves. It's not just about regulating myself -- it's also about not knowing if the thing will remain available. If I think someone else might finish the chocolate cake before I get any, I'm going to go for it when I'm not quite as hungry (and haven't had quite as much of the healthier options) than when I know it'll still be there if I wait. The same principle applies with talking: say everything you can, while you know you can.

Scarcity over time absolutely can mess up any self-regulation that's been learned, too. Even if teaching self-control is a concern here, it's not always so much, "leave the device with them so they learn self-control." Sometimes it's, "leave the device with them so you don't destroy whatever self-control they have."

That's all besides my main issue: I've never heard anyone use the need for a speaking person to learn self-control as the reason they don't tape this person's mouth shut. Most people seem to get that taping someone's mouth shut is not OK. (Most, not all. In the context of really nasty abuse, it happens, and be warned if you decide to look at the details.) Most people don't need a self-control argument in order to understand that taping someone's mouth shut is unacceptable.

An argument about the need to teach self-control shouldn't be needed here, either. If we have to consider teaching self-regulation (a useful skill, to be sure!) as an argument for why we shouldn't be taking away a person's communication access, things have already gone badly wrong.

Monday, November 13, 2017

I'm gonna talk about pain now

Under most circumstances where people would expect me to report pain, I display a really high pain tolerance, or threshold, or probably both. I've mentioned a couple times that I went hiking on a freshly broken foot, and that I was fine. When I got attacked by an ~800lb Old Spot pig, I had a cantaloupe sided lump on my thigh, and I also went on rides at the Fryeburg fair that afternoon. (I got mauled on a Tuesday. I rode my bike to school that Friday. There was no pain medication involved.)

Then there are other kinds of pain where I ... don't have that kind of tolerance.

The key is how my sensory processing issues are involved in the pain. (I'm not certain that it's possible for my sensory processing to be uninvolved in any sensory experience I have, ever, and it's probably related to the high pain threshold at the least.)

If my sensory processing issues (and I'm OK calling these ones issues, they hurt) are the cause, my pain tolerance is super low. Camera flash? Comparable to getting hit in the face, because I kind of am getting hit in the face. Ow.

If it's an injury pain, I've got a high pain tolerance. I'll probably notice that I did something, because I was presumably aware when the injury happened. (It took a while to figure out that my leg had an issue after I passed out in the pool because I was not conscious when I hit my leg on the edge of the pool.)

If it's an illness pain, there's a significant chance that I won't notice. It's not unusual for me to figure out that I'm sick based on a more behavioral cue. Why am I shaking? Why am I shivering? Why can't I talk? I just threw up so I guess I'm sick.

Three different sources of discomfort. Three different reactions. 

Thursday, November 2, 2017

Dear Medical Professionals, I'm not a sick or injured NT

This got prompted by Autism Women's Network asking what we wish medical professionals knew.  If you're seeing this shortly after it posts, they're probably still looking for feedback, in case you have thoughts of your own.

The gist of my thoughts is: dear medical professionals, I'm not a sick or injured NT. Overwhelmingly, I've had medical professionals assume that if I'm not presenting the way they've been taught people with a given issue present, that means I'm not having that problem. This has led to them missing broken bones. So, the first thing I want to talk about is pain.

  • No, I can't rate my pain on a scale of 1-10 for you in any useful way. The only pain scale I've ever found that made any kind of sense to me put hiking on a freshly broken foot at a 2 or a 3. I am reasonably certain that hiking on a freshly broken foot would not be a 2 or a 3 for an abled neurotypical human, but it was for me.
  • Yes, I understand that you need a pain scale number for insurance. Figure out what the problem is or take a reasonable guess based on everything except my reported pain level, then you take a guess for what it should be. I really, really can't. It is a waste of both of our times to try to get a number from me.
  • If you think or were taught that a person with a given injury or condition "can't" do something, think about why. Is it a structural issue, where a joint literally won't take the weight, or is it supposed to hurt too much, or is it supposed to take too much energy? If it's pain, there's a very good chance I can do it anyways. See again: hiking on a freshly broken foot. Yes, I'm still annoyed at the doctor who concluded the image that looked like a month-old broken foot (because it was a month-old broken foot!) couldn't be a month-old broken foot because I'd been walking on it.
Somewhat related is hypermobility and hypermobility related injuries. It's related because hypermobility often comes with chronic pain. My pain sense isn't reliable enough to tell you if I have hypermobility related chronic pain or not. (Oops.) It also comes with an increased likelihood of dislocating and subluxing things, and often a ridiculous range of motion. (Said range of motion could get reduced by injuries. It happens.) Related to my hypermobility:

  • "Normal" range of motion and my normal range of motion are two different things. Don't assume I'm fine because my range of motion is strictly greater than this "normal" range of motion, and realize that things are very wrong if that's all I've got.
  • Things you think a person needs to be really loose to do? I can probably still do them while very tense. A friend of mine who weighs over 250 pounds recently wound up standing on my back in an attempt to break up the tension there. It just barely worked. I still had my normal flexibility like that. Don't assume my muscles aren't all knotted up just because I'm still flexible.
  • If I dislocate something, I can probably put it back into the joint myself, and I probably didn't tear anything. That means I'm going to recover from it way faster than someone without hypermobility. However, it may still hurt, and it was still a dislocation. It especially will still hurt if my joint sat wrong for a while. (Also, my hips will hurt every time, right away. I recover really fast, but yes I need a moment.)
And of course, communication. I'm Autistic. I don't communicate like a neurotypical person would.
  • I am going to be precise. If your recap is even slightly off, I will correct you. Considering that y'all have managed to forget things like, "Alyssa isn't being sedated" despite being reminded many times, and y'all have also manged to misunderstand "I don't trust my pain sense to tell me if it's broken or not" as "Not broken because the patient can walk," I'm going to keep doing this. Cope. Or even thank me because I'm keeping you from making medical errors!
  •  Written communication is better for me than spoken communication. I can be much more precise in writing. If you give me the questions that are going to be asked ahead of time (or believe that I have some idea - I do!) I can type up answers and get them to you. That way, you don't need to worry that you've tripped a script in the initial description of whatever my issue is.
  • I have a lot of scripts. "Fine thanks and you?" is a script. Unless this is my annual physical, it is also inaccurate.
  • Phones are bad. Let me book online, or via email, or in person before I leave the prior appointment. Do not demand I book over the phone. I can't.


Wednesday, November 1, 2017

"Speaking" to academia #ASDay

I wear many metaphorical hats. I'm a teacher. I'm a published poet. I'm a disability studies scholar, affiliated with a university but not for disability studies. I'm a graduate student in neuroscience. I'm an Autistic advocate, and not only a self-advocate (advocating for myself is often harder than the general stuff.) I'm a blogger.

Always, I am all of these things (and a bunch of other things). Sometimes, I get the opportunity to combine them. I've been blogging for GradHacker, part of Inside Higher Ed, since the start of the calendar year. That's for writing that's relevant to graduate students, or about graduate school.

Even though I know disabled graduate students exist, and disabled professors exist, and anyone teaching will eventually have disabled students, I've worried before every disability-related pitch I've made to them. Is it a topic that anyone outside disability communities would care about? Do they have enough background to understand the issue even if they care? Will the editors go for it, even if the audience would find the post useful?

It's far easier to talk about something like my discussions with my union, where my example "just happens" to be about disability. I know graduate assistants unions and contracts are widely relevant. I know "read your contract!" is good advice for any graduate assistant. One of the reasons I give is about knowing where I go for my accommodations, but it's not the only one I give. There were all of three disability posts on GradHacker before I started blogging for them, so far as I can tell. Breaking that pattern was a bit nerve-wracking. (Three of the posts I have up for them are explicitly about disability, and all but one at least references it. Seems like a lot, but I said I could bring a disability perspective when I applied and they took me so they kind of asked for it? That's what I tell myself, anyways.)

The disability series I'm writing for GradHacker now didn't start out as a series at all. It started with a post I'd had the idea for, and then suddenly couldn't not write. That's how a lot of my writing happens, actually. The disability stories I'd heard over the course of my time at university, either from professors or from other students, scare me. A way of explaining the pattern came to me, and I had a post. I was about to post it here, and then I realized that the GradHacker audience was the one that really needed to see it. They're reasonably likely to be teaching college later, and they might be doing so now! That became of the most commented-on pieces on GradHacker, because I "spoke" up. (Maybe the most commented on. Definitely the most commented on since I started blogging for GradHacker, almost by a factor of three.)

Now it's going to be at least four posts: one about disability stories, one about using AAC as a student, an upcoming one about the accommodation talk as a student (written, but not scheduled to post until late this month), and one an editor suggested to me about disclosure as a disabled teacher.

I'm talking to academia, or the future of academia, about things that directly affect me as an Autistic graduate student. Some people might even be listening. I hope so.