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.

Appreciate my writing? Support me on Patreon!

Not everything is possible (And I get a lot more done when I admit this)

There are, in fact, things I can't do, no matter what mindset I am in. There are, in fact, things where it is not worth my time to try it again and bang my head against that (metaphorical) wall one more time, just to satisfy people who say I won't know until I try. (Usually I have tried the specific task already, which means I should get to know by their logic? The rest of the times, I've tried enough sufficiently similar things that I can predict what the problem will be.)

Now, this is probably the part where you want to tell me not to be so hard on myself. You might want to tell me that the only disability in life is a bad attitude. (Maybe, just maybe, I'll shoot back that my primary disability is y'alls bad attitude about my realities.) Maybe you want to tell me that anything is possible, and tell (not ask) me how much I'm limiting myself this way.

Because I used to think that if I just tried harder I could, in fact, do anything, I actually know what my abilities look like that way. I'm still working on the details of what my abilities look like when I recognize my limits (which is not the same thing as limiting myself, to be clear. I do not bring these limitations into existence by recognizing them.) But I can tell you this: Overall, I get more done  (not less!) when I admit that there are things I can't do. 

I get more done when I recognize that I am not going to gain the ability to independently organize my space on the n+1st try, and that I should wait to try this whole organization thing until the person helping me is ready, because I don't spend all my energy on it until there's someone there to help make sure I'm spending it in useful ways. (Organizing my room still costs all my energy for the day, but it at least ends with organization.)

I get more done when I recognize that my exception handling is not suddenly going to work normally just because that would be convenient. (Weirdly enough, this exception handling issue as it relates to sudden schedule changes is one reason that pushing through pain or illness to finish whatever I was planning on doing is actually the smarter choice. Which sounds like the opposite of limiting myself, at least to an outside observer, I think? That I'm doing a thing while sick or tired or injured because I know my limits even sounds counter-intuitive to me, and I know it's sometimes true.)

I get more done when I recognize that this exception handling issue (plus whatever else is going on with certain kinds of questions that cause them to create an exception in the first place) will, in fact, prevent me from doing many surveys and evaluations. If I'm not burning out most or all of my energy for the day on some survey my program asked me to do (and which they thought would be a 5 minute easy thing), I still have that energy for literally anything else.

I get more done when I recognize that I can't actually stay in a room with a flickering fluorescent light or troubleshoot a circuit with an LED flashing at 5-20 Hz. That's because said flashing lights will, given time, knock out my ability to speak, possibly my sense of direction, and definitely my ability to concentrate on anything other than make it stop. Turn off the light. Unplug the circuit while I try to determine what's wrong with it. Replace the 0.1 microfarad capacitor with the 1 microfarad capacitor to get a .5-2Hz flash rate on the LED, or with 0.01 microfarad for 50-200Hz that I can't see flashing. 

I get more done when I recognize that I am not going to be able to cook three meals a day for myself (and not even one consistently if I'm working from scratch) because I can plan around this. At university, I have a meal plan. That keeps me fed. At home, I cook a large pot of something once or twice a week and eat it until it's gone (then stare sadly at the pot which no longer contains food because I am hungry and there is not a food.) This doesn't work as well as the meal plan does, but it works much better than believing that if I just try one more time, I can cook three meals a day. Because I am spending less time trying to make food happen and more time fed, I can get more other things done too!

I get more done when I recognize that I do, in fact, need to stim and probably shouldn't be faking eye contact all the time. (No, really. Letting myself flap and rock made the difference between always absolutely needing 10 hours of sleep per night with people being able to tell the difference if I got "only" 8-9 hours of sleep one night and my being completely fine with 9 hours as a regular thing and OK with 7-8 occasionally.)

I get more done when I recognize that I am not going to work 40 hours in a week. (I'm going to suggest that anyone who's ever seen my class schedule not run the numbers for this statement, because you will be at least as confused as I am by how this works. I'm pretty confused even while knowing from experience that it somehow does.) I get more done because I'm not staring at whatever my work should be and not recovering when I burn through my mental energy in two to three hours. I rest for several hours and can sometimes (not always, but sometimes) get a second good shift of an hour or three writing things that needed to be written, doing homework, reading for classes, preparing to teach, editing work before I submit it somewhere, or reading for the purposes of my writing. That's more done than when I tried to work straight through, just to be clear. Less time total that looks like work, but quite a bit more done and similar amounts of time that are actually work.

I get more done when I recognize that I can't do a hackathon or any other kind of event that involves working for a marathon amount of time at a sprint level of intensity while going short on sleep. (Actually any event or combination of events that puts me short on sleep for more than a night or two is usually out regardless of intensity, and it's definitely not happening during the semester.) Making myself ill over the weekend by burning myself out to the tune of needing two or three days completely off to recover... when the next day is Monday? Yeah, I can't do that. (Seriously, do you think I'm going to gain the ability to work a 40 hour week by putting all 40 hours onto 2 days?) A more extreme version of the work model that already doesn't work for me only fails more obviously. 

I have better class participation when I don't try to force speech until it's gone, then fall silent because if I had something to say I'd be able to say it. Switching to writing when speech gives out means I can keep participating, that I can show what I know and help my classmates when they are having trouble, and that I can ask questions if I need help. Switching to writing at the point that writing is simply easier overall lets me save energy so that speech might not even give out entirely! That comes in handy if I have sports practice after class, or if I'm going anywhere that doesn't have a white board. 

I have a better time on vacation when I recognize that I'm not going to enjoy speeding from activity to activity at a breakneck pace and will eventually melt down if I try. I still want a calm hour alone on my computer in the morning and similar at night. (I also wake up earlier than my family by enough that it's really easy for me to get that morning hour.) So I bring my laptop on vacation, even if I'm not planning to work, even though the others don't. 

I can't stop you from believing that I'm limiting myself (as opposed to recognizing limits that are already there and being happier and healthier while doing more things I care about because I'm not banging my head against the stuff I can't do.) I can, however, explain so that 1) I remind myself that I'm doing what works for me, and 2) others like me can read that they are not alone.

Appreciate my writing? Support me on Patreon!

Pride and Resistance

I made words on Autistic Pride Day. That's a thing that happened.

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:

1. 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.)
2. 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.)
3. 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.

Appreciate my writing? You can support it on Patreon!

Educational experiences interview

Today (October 9 as I write this) I participated in a follow-up interview for a study some folks at my university were doing on the educational experiences of students with disabilities.

The interviewer defaulted to person-first language. Which, whatever, I don't actually care what you default to as long as you can handle the part where some people in the population you're referring to will have a different preference, and even for reasons! Those reasons tend to relate to the particular ways people have dehumanized us, as well as with community identities.

However, what I found interesting was that one of the things he said was, "You said last year that you identified as a person with autism--"

I don't know where he was going with that because I interrupted him. No, I guarantee you that I did not say that, because I didn't... a year ago I already had quite a few posts on my blog about why I don't identify that way. Since one of the big things from the interview is how we identify and I have literally never identified that way, that was an important thing to get right. Nope, nope, nope.

I identify as Autistic. I identify as an Autistic person. I didn't say this one in the interview, but when I'm feeling particularly snarky, I'll even sometimes call myself an "autism whose life experiences coincide with the diagnostic label of personhood."

Since the general focus was educational experiences (as opposed to identity as a big sub-focus, but still a sub-focus) that bit was a fairly short part, but it's one of the things that stuck out to me.

He also asked me about how I handled the not-always-able-to-speak deal, since I'd mentioned that I can't always speak and that it's mostly a logistics issue for me. As long as I still have a good way to communicate and do what I need to do, I really don't care if speech is working or not. (I''m still working on the logistics for classroom teaching with large, face-to-face classes, but as a student and as a tutor it's definitely not an issue.)

For my two graduate math classes this semester, I sit in the front row on the right side so that I can reach the side board in the room from my seat, and I carry a whiteboard marker with me. That way, if speech stops working but I want to say something, I can write on the board and everyone can see it.

Another bit I noticed is that he (like most people) seemed a bit surprised by the extent to which I will joke about pretty much every aspect of my disabilities. Pattern recognition tells me that most people, especially enabled people, are going to be surprised by that one, but it always sticks out to me just how much people expect disability to be so serious, all the time.

Nah, I'll crack jokes, because a lot of the issues either genuinely amuse me and because many of the ones that don't fall under laugh to keep from crying territory.

The way one of my teachers this semester, who I'd had a couple times before, reacted the first time he saw speech go kaput on me was one of the genuinely amusing ones. (He refers to it as being "offline," which isn't my word but as long as we're clear on it just being speech that's offline I think it's as good a word as any.)

See, I corrected all of the typos he made on the whiteboard... from my seat, without speaking because I couldn't. He'd written the "element of" symbol instead of the "subset of" symbol a few times, if I remember correctly. Anyways, after I got them all, he told me to "be quiet!" He was laughing, so I wrote on the side board, "But I'm not talking!". So he said I knew what he meant (true.)

The next day, I went to check in with him since he'd never actually seen speech give out on me before. His one question? Whether or not he'd been too hard on me about it. I'm not actually sure what he did where he'd worry about that, since I'm fairly sure I'd have gotten a laughing "be quiet!" type reaction had I done the same thing while speaking... but that's a whole lot better a concern than whether or not I'm OK to be in class when I can't speak (yes...)

Finally, I thought it was interesting (and definitely good) that he asked what advice I had, both for students and for educators. For students I said to remember that smiling, nodding, and doing what you want anyways is absolutely an option, and also that when people are talking about evidence supporting various strategies, look closely at what the evidence is of: no matter how much evidence anyone has that they can get you to a particular goal, it's not relevant you don't share that goal.

For educators? I said to remember that students at least sometimes not doing what they're told is totally expected, because 1) students are people with potentially different goals than you, and 2) sometimes we are literally not capable of doing the thing. When it's the first, that's not a disability issue, and when it's the second, consequences won't make us magically gain abilities. 

And then I played sports

No, really.
I'm not good at sports, but I play on my universities ultimate (Frisbee) team. I have every year I've been on campus, except the semester that I had a broken foot.

I am also a part time AAC user, because I'm not always able to speak, and I'm also dyspraxic, and I tend not to process movement as quickly as my teammates.

This year, because the incidence of injury has been increasing (I broke my nose playing this sport in high school, but the worst that's happened to me in college is getting cleated) all of the players had to do a concussion recognition training. I actually think this is a good idea, but I needed to clarify a few things for my teammates and coach because the training assumed a neurotypical player for their baseline.

This is pretty much what I told them, shared in case it comes in handy for any of my fellow autistic athletes. I know more of us exist.

1. Changes in speech: If speech is completely gone, or if it's slow and halting, this means very little. These could happen as a result of a major injury, but these could also happen because I am tired, hungry, thirsty, hot, cold, sore, stressed, or because I made actual eye contact with someone. 
1. HOWEVER, if my speech is slurred, that is a sign of something unusual. My regular language issues don't include slurred speech.
2. HOWEVER, if I'm also having trouble writing or typing beyond the expected difficulties doing so in the current level of cold, that is a sign of something unusual. My normal-for-me instances of speech going kaput leave typing and writing unaffected.
   
2. Appearing to move clumsily: I'm dyspraxic. Any way of moving that I haven't done many times, and recently, is going to be clumsy. Flapping my hands is also TOTALLY NORMAL, along with rocking.
1. HOWEVER, if I'm clumsy at something I normally do smoothly, like throwing a flat forehand, that is a sign of something unusual.
   
3. Appearing confused on the field: I process movement a bit slower than most people. My pattern recognition is good enough that I can cover for this when everyone is moving in patterns I recognize, at which point I can even appear to have faster than average processing and reflexes, but I don't.
1. HOWEVER, if I'm showing confusion about plays I've mastered, that is a sign of something unusual.
   
4. General overload (same causes that lead to my losing speech) can reduce the threshhold for clumsiness or confusion. So if I only recently mastered a way of moving or only recently mastered a new play on the field, and then I'm overloaded, me falling apart at those isn't actually surprising.
   
5. I will show behavioral changes that indicate (nearly all) injuries before I am aware of being injured. So if I seem to be favoring an injured leg but haven't said anything about an injured leg... ask me. If you get me thinking about the leg, and it's injured, I might be able to tell you that I'm injured, even if I hadn't noticed it before.

Presenting

Apparently my presentation at Autcom is the part that I'm able to write about. For the ways things were done wrong (and were they ever done very, very wrong) you can read Neurodivergent K's post, Turtle is a Verb's post, Mitchell's post on a blog I think he might have created just to be able to write this mess up, Beth Ryan's post, Expectedly's post, or the ASAN New York statement.

Let's just say that Neurodivergent K was my roommate and one of my co-presenters, and that Beth Ryan was our other co-presenter. And by "our other co-presenter" I might mean the one who got the panel organized? I'm not sure beyond "it wasn't me."

Because of what happened the Friday afternoon and early Saturday morning of the conference (see the posts I linked at the start,) my ability to speak was cutting in and out most of Saturday morning. I know from experience as a math teacher at my university that so long as I have speech when I go "onstage," I will retain speech until I go "offstage." I put the onstage/offstage in quotes because it's not exactly about a stage, at least not a literal one, though it is about a sort of performance.

However, what I did not know was what would happen if speech was already gone when I went "onstage." Since I put in some effort towards making sure speech is still around when I start teaching math classes at my university, and since that effort had always worked (it's not that hard to avoid things that'd cause speech to go kaput on me for the first 3 hours of the day when I have a single room and am just working on lesson plans and/or grading,) I had no reason to know.

Now I know. Thanks Autcom. (That's sarcasm, by the way. I am not actually grateful for this knowledge.)

If speech is already gone when I go "onstage," it doesn't necessarily come back. It didn't for my presentation.

I had brought my laptop with me for the slides, so I'd already been planning to hook my laptop up to the projector. This was good, since I was then able to open up Open Office on my laptop, make the font bigger, and present by typing into a text document. I switched the screen back and forth between the text document I used to write to the audience and the slides my co-presenters and I were using, as relevant. If I had something to say, I had the document up, and if my co-presenters were talking about something to match a slide, I had the slides up.

Before presenting, but after I had hooked up the laptop, I was working on a piece for The Autistic Exchange, which is a fanfiction exchange by and for Autistic people. I won't claim it was my best work, but the people who were in the audience waiting for my panel got a bit of a preview. If you want to read it, the authors for the collection have been revealed so I can tell you which one it was. Here it is!

The presentation went well, and we tied some examples from the Autcom mess into what we were talking about on the panel, which was how partnerships between parents of autistic people (who may be autistic themselves) and autistic adults (who may also be parents) can work. The Autcom examples were not the positive ones.

I also cracked jokes while presenting. I told people about how I got a teacher to tell me to "be quiet!" when I wasn't actually able to talk. Without context, this seems like it'd likely be bad, but with context, I was amused and I think the teacher was too, considering that he was laughing while telling me to be quiet. I was correcting every single board typo and that the teacher would have been treating my writing to communicate differently from other student's speech had he not told me to shush. He was just imprecise with his terminology, in a math class where he talks about how important precision is. Therefore, I found him telling me to be quiet most amusing.

Post panel, Neurodivergent K and I were kind of cornered together by this Sandi person. I wound up typing to her about stuff that would have been an OK conversation if it weren't for the part that she was totally trying to pretend everything was cool without actually doing things to fix the things. That made it a very stressful conversation instead.

After the panel and cornering were both over, I found out that I "inspired" someone. Before you do the spit-take and wonder who is about to get verbally eviscerated, the answer is no-one. This was one of the few examples of "inspired" where I totally agree with the word choice. I apparently inspired another Autistic adult who would benefit from using augmentative and alternative communication part time to do so, and more openly. I'm cool with serving as that sort of inspiration.

Doing What Works- Academia Edition

Making notecards for research papers seems like a pretty accepted thing. When they taught us how to do research papers in high school, they made us do them (and handwritten, too!) When my friend, a history major, was writing papers for college, he made them. His were handwritten. Quite a few of my friends make them too.

As soon as I wasn't required to anymore, I stopped making physical note cards. It's not because I don't think they're a good idea. I think having note cards is great. The problem is making them. My handwriting is messy enough that handwritten note cards don't actually do me much good, and writing starts to hurt fairly quickly so I'm not inclined to make cards, especially when they won't help much due to the messy handwriting issue.

Instead, I've been typing my notes. This is useful because it's hard to lose a digital copy of my notes. It's also useful because I can read things I typed later. It's easier than handwriting, because typing doesn't make my hands start to hurt. It lets me post my notes publicly, which I do in the hopes that they are useful to someone else. (I've got friends who do academic stuff, and if my notes about a source help them decide if reading it is worth it or not, or if having my notes lets them spend less time going through the source once they have it, this is great! I like it when academics post things publicly and it makes other people's lives easier.)

Because technology exists and can do cool stuff, and because I know printed note card size flash cards exist, I recently looked around for ways to print directly onto index cards. Lo and behold, it can be done! Apparently, as long as you make your paper size right in your document and in the print step, most printers can print to index cards, either 3"x5" or 4"x6".

Now I can get the benefits of both digital notes and legible notecards! It's a bit of a process, but way faster than trying to read my handwriting.

1. Take notes on my laptop, typed, regular letter paper sized document.
   
2. Save as "Notes" for the source.
   
3. Save again, as "Note cards" for the source.
   
4. Change the page size to 4"x6" (big index cards) and the margins to 0.5"
   
5. Copy the citation for the source to my clipboard.
   
6. After each note that I want a note card for, paste the citation and then insert a page break. On my copy of Open Office, ctrl+enter does a page break. (I don't need a physical card for "Also read this source the author cited")
   
7. Load up the index cards in the printer and print!
   
8. Sort the cards by project they relate to. If a card relates to multiple projects, I can print multiple copies of that page so that a card for it goes in every project it relates to.
   

I do have a decent bit of overlap between projects, too. My projects (in varying levels of activity) are below, and purple lines connect projects that currently have at least one shared note card.

Image description: Project titles in boxes connected by lines representing shared note cards between the projects. The listen projects, left to right and then top to bottom, are 

1. "Neurodivergent Philosophy of Science," 
2. "Rethinking Engineering Design and Disability," 
3. "Cognitive Interpreting Application," 
4. "Theory of Mind Inside Out,"
5.  "Disability Studies for Engineers Course Creation," 
6. "Cognitively Accessible Language (Write so the folks you write about can understand)", 
7. "Erasure of Queer Autistic People," 
8. "Queer Because Neurodivergent is STILL QUEER."

Using the numbers as shorthand for the projects, the following pairs are connected:

1 and 2, 1 and 4, 1 and 5, 2 and 3, 2 and 5, 3 and 6, 4 and 6, 4 and 7, 4 and 8, 5 and 6, 7 and 8.

Be Brave (Revolution)

Say what you wanna say and let the words fall out.
They say war is necessary,
But we say war is child abuse.
Find the new ways that we must be king,
Instead of leading the young to our suffering.
I wanna see you be brave.

Sign what you wanna sign and let the words fall out.
Don't let them pretend they're saving you!
Don't bend, don't break, baby, don't back down.
There's no one here to save.
I wanna see you be brave.

Write what you wanna write and let the words fall out.
Start a revolution at the break of day.
So we're calling all the crows, they're coming in slow
It's gonna be a showdown, said the rebel to the revolutionary follow me,
We tell the court, you tell the king,
That we ain't listening to you no more!
I wanna see you be brave.

Type what you wanna type and let the words fall out.
You could cut ties with all the lies you've been living in.
It's time to try defying gravity.
Unlimited, together we're unlimited
As someone told me lately,
Everyone deserves the chance to fly.
I wanna see you be brave.



Another echolalic poem. Lyrics (sometimes slightly modified) from:
Brave- Sara Bareilles
People of the Sun- PONS
King of Anything- Sara Bareilles
White Flag Warrior- Flobots
It's My Life-Bon Jovi
Jumper- Third Eye Blind
Calling all Crows- State Radio
Knights of Bostonia- State Radio

On #WAAD I...

Check the calendar.
It's really today.
Can it not? Can we not?
Please.
One year, one day, someday.
But no. Blue is here.

I sigh, and don my armor orange.
April 2 is still a Thursday, still a long day.
Flap my way to class,
Rock in my chair,
Look a foot to my teacher's left.
No hiding today of all days.
No letting people think autism is only children.

In class, we are asked of stresses and strains.
(I'm an engineering student, and a math student.)
I flap for words.
I speak.
I flap for words.
Fewer words come.
I flap for words-No words.
They're gone.
I flap for words-No words.
Dare I type instead?

Don my armor orange.
No hiding today of all days.
Out the iPad comes, to speak.
Autism doesn't speak unless autistic people are speaking.

Autism... something Month

Not awareness. Awareness is scary because people who think they're "aware" of autism are mostly folks who are working off a whole lot of fear-mongering and Not Like My Child and all kinds of yucky stuff.

Not sure about acceptance, because I'm not sure that's enough. Acceptance and tolerance often feel similar, with a "well, fine, we'll deal with you as you are as long as you're close enough to normal" vibe to them. And I can't help but remember that acceptance is listed as one of the stages of grief. I think Autism Acceptance Month has actually been used that way, in a co-optation. The people I like and trust and work with on this sort of thing go with Autism Acceptance Month, and I won't argue with them over it while they're actually doing good stuff. (Language is, in fact, not the most important thing to me, even while words mean things. Language is imprecise sometimes and connotations make things tricky and that's OK. Language changes, too.)

There's already an Autistic Pride day, and it's in June.

Realistically, I'm just going to stick with Autism Acceptance for the time being. I'm also going to do stuff. National Poetry Writing Month is April, and I'll be writing a poem a day for the month. I'll be putting them up in chunks again so that I can post other things as well, but that's a thing that's happening. I'm considering putting some echolalic poetry in again this year. 

And I'm making my short stories with autistic characters in them free for 5 days apiece in April. First up is "The Beginning of Her Hell", which is free for April 1-5. Warnings for ableism and threats of institutionalization and violence in this story. (Ok, so as of right now there are two such short stories, but I'm hoping to get one more up this month.)

Image of the cover for "The Beginning of Her Hell" by Alyssa Hillary. A pair of blue eyes stares out over a typewriter.

#AutismSpeaks10 Aren't #AutismChampions.

I've been fairly active on Twitter the last few days with the Autistic and allied takeover of the #AutismSpeaks10 hashtag, and now the new tag, #AutismChampions (the s at the end is important, because without it you wind up in a different tag.)

I've also been super-busy offline, and I've been working on some cool advocacy, activism, and art stuff that's not ready yet, so I've not had enough time for that and blogging typically. In lieu of a more typical blog post, here's embeddings of all my original tweets to those two tags. :)

I seriously recommend looking at both tags, though, and maybe retweeting some stuff or adding your own! Warning, though: Some of the stuff Autism Speaks has done is really triggering, and we are talking about it.

#AutismSpeaks10 spreads the idea that our families are not living, just existing... and doesn't seem to worry how saying so affects *us.*
— Alyssa (@yes_thattoo) February 21, 2015

#AutismSpeaks10 style "awareness" is why TNJU didn't want an autistic student (me) to study abroad at their school.
— Alyssa (@yes_thattoo) February 21, 2015

(The Chinese tweet is a translation of this.)

#AutismSpeaks10 tries to teach autistic children to act normal (hence, speak) and then adults to STFU. Interesting turnaround.
— Alyssa (@yes_thattoo) February 21, 2015

#AutismSpeaks10 helped me realize just how much people are afraid of anyone who thinks and acts differently. By spreading that fear.
— Alyssa (@yes_thattoo) February 21, 2015

由于 #AutismSpeaks10 的“帮助” 和 “提高认识”，天津师范大学恐怕自闭症，不要接受自闭症的留学生。
— Alyssa (@yes_thattoo) February 21, 2015

(This is Chinese for the TNJU (Tianjin Normal University) tweet.)

#AutismSpeaks10 has taught people that without normalization therapy, autistic people can't have a good life. But here I am, and here we are
— Alyssa (@yes_thattoo) February 21, 2015

#AutismSpeaks10 years lobbying to mandate therapy to match the guy who thinks we don't start with basic rights as people. See Lovaas: (1/2)
— Alyssa (@yes_thattoo) February 22, 2015

"With responsibility, the developmentally disabled individual takes on dignity and 'acquires' certain basic rights as a person."-The ME Book
— Alyssa (@yes_thattoo) February 22, 2015

#AutismSpeaks10 seem pretty sure that natural autistic body language and coping mechanisms are scary behaviors to eliminate. They're wrong.
— Alyssa (@yes_thattoo) February 22, 2015

Well, the Autistic tradition of flipping off the #AutismSpeaks10 offices when we pass them in NYC or Washington, DC is kinda fun, at least.
— Alyssa (@yes_thattoo) February 22, 2015

Like, JER left #AutismSpeaks10 essentially because they weren't listening. He already tried the nice thing. It DOESN'T WORK.
— Alyssa (@yes_thattoo) February 22, 2015

Be sure also to thank #AutismSpeaks10 for saying autism works faster than cancer and muscular dystrophy. #IamAutism @Privetine
— Alyssa (@yes_thattoo) February 22, 2015

Just a reminder that for an additional #AutismSpeaks10 backfire gift, you can totally leave a 1 star review here: https://t.co/wqKnUAjTZc
— Alyssa (@yes_thattoo) February 22, 2015

Y'know, without #AutismSpeaks10 years of fear-mongering, fewer #actuallyautistic would have so much time for twitter. #irony.
— Alyssa (@yes_thattoo) February 22, 2015

Given what #AutismSpeaks10 has for stated goals, I'm GLAD they're inefficient. Eliminating autism is eugenics, folks. #ActuallyAutistic
— Alyssa (@yes_thattoo) February 22, 2015

Reminder that #AutismSpeaks10 tried to sue an autistic minor for parody. Talk about silencing autistic people! http://t.co/OwheWn5gjn
— Alyssa (@yes_thattoo) February 23, 2015

Also a reminder that #AutismSpeaks10 has a history of plagiarizing autistic adults, white-texting, and lying about it http://t.co/1hmhMMd65X
— Alyssa (@yes_thattoo) February 23, 2015

But seriously, I have a "Problem with Autism Speaks" tag. http://t.co/7MTJPKDq0W #ActuallyAutistic #AutismSpeaks10 @autismspeaks
— Alyssa (@yes_thattoo) February 23, 2015

So @alannarwhitney made an #ActuallyAutistic alliteration acrostic of #AutismSpeaks10 here: http://t.co/C8XlhKVnDw Poetic truth to power!
— Alyssa (@yes_thattoo) February 23, 2015

#AutismSpeaks10 years of acting like autistic people are complete burdens and writing us out of our own stories.
— Alyssa (@yes_thattoo) February 23, 2015

#AutismSpeaks10 years of actively spreading fear of autism and #ActuallyAutistic response got covered on @BuzzFeed http://t.co/bpjqRlHQ4z
— Alyssa (@yes_thattoo) February 23, 2015

Just occurred to me that "The Beginning of Her Hell" is an argument against the "therapies" #AutismSpeaks10 suggests. http://t.co/XaCmPFlI9D
— Alyssa (@yes_thattoo) February 24, 2015

#AutismSpeaks10 years of every cool thing an autistic person does being "despite" or a sign of "overcoming" autism. :(
— Alyssa (@yes_thattoo) February 25, 2015

. @GMA Consider covering the #ActuallyAutistic responses to #AutismSpeaks10 Autistic people are speaking, listen to US.
— Alyssa (@yes_thattoo) February 25, 2015

#AutismSpeaks10 years insisting that barest acknowledgement of good things from autism is "false hope" of sunshines and rainbows...
— Alyssa (@yes_thattoo) February 26, 2015

#AutismSpeaks10 years of frank eugenics. That's what trying to eliminate those deemed "burdens" is. #ActuallyAutistic #RightsNotElimination
— Alyssa (@yes_thattoo) February 26, 2015

#AutismSpeaks10 speaks over us like we're not here and calls us #MSSNG. And also can't do math: 3 million Autistic Americans=total. Not kids
— Alyssa (@yes_thattoo) February 26, 2015

#AutismSpeaks10 uses our numbers to spread fear then denies we exist. #Autistic adults know what's up. #ActuallyAutistic #MSSNG #NotMSSNG
— Alyssa (@yes_thattoo) February 26, 2015

So remember that #MSSNG campaign that #AutismSpeaks10 ran? And how that's legit saying we're missing (stuff)? We're #NotMSSNG. We're here.
— Alyssa (@yes_thattoo) February 26, 2015

#AutismSpeaks10 lobbies to mandate a therapy that shares its history with gay conversion therapy. Lovaas-ABA. Look it up. #ActuallyAutistic
— Alyssa (@yes_thattoo) February 26, 2015

#AutismSpeaks10 lobbys to mandate a therapy with a stated goal of indistinguishability, at unreasonable cost: http://t.co/a2lHk0XWoR
— Alyssa (@yes_thattoo) February 26, 2015

Dude. If you get run out of your own hashtag by the population you claim to help, you are NOT #AutismChampions. #AutismSpeaks10
— Alyssa (@yes_thattoo) February 26, 2015

#AutismSpeaks10 is the problem, making it harder for #ActuallyAutistic #AutismChampions to get anything done.
— Alyssa (@yes_thattoo) February 26, 2015

Some REAL #AutismChampions are @UVGKassi @dkmnow @autistichoya @CorinaBecker @AutismAcceptDay @Aut_Love_Accept @Autism_Women
— Alyssa (@yes_thattoo) February 26, 2015

.@DeannaNMc Autistics speak, it's time to listen TO US. ( @autismspeaks can shut up now, they aren't #AutismChampions.)
— Alyssa (@yes_thattoo) February 26, 2015

#AutismSpeaks10 as #AutismChampions? More like #EugenicsChampions, get real. Eliminating autism *is* eugenics.
— Alyssa (@yes_thattoo) February 26, 2015

As an #ActuallyAutistic person, I'm grateful for @AutismSpeaks inefficiency, not their work- a sign they aren't #AutismChampions after all.
— Alyssa (@yes_thattoo) February 26, 2015

"Live" blog of my presentation to the Five Project

The Five Project is an autism organization of some sort (I actually didn't know much about them other than that they wanted a presentation on autism and neurodiversity, and now that they liked it and are apparently hoping I'd be willing to do something like it again.) I wrote a script that was kind of a mix of English and Chinese but mostly English, Vivien (an exchange student working with Steven Kapp) helped me translate, and then I recorded and edited a video that was mostly along the script, though rarely actually identical. We each updated the script to match about half of what I actually said. And then yesterday morning, I logged into the virtual presentation, which I live-"blogged" into Notepad++.

Now I'm sticking that here.

------------------------------------------------------------------------------------------------------------------------

IT IS HAPPENING NOW AND I AM A BALL OF NERVES.
People are interested to hear me talk, and they're impressed with my ability to speak Chinese, and they're not NLMC-ing at the moment (there's time yet and considering the opinion folks tend to have of white people's ability to speak Chinese combined with my actually being able to speak I'm expecting it any minute. Wonder what it looks like in the more subtle/委婉 Chinese way.)

Not a lot of comments going on at the moment, which is OK with me. I can hear comments arrive, and I can hear myself talk (ugh I sound so not-fluent, even compared to my usual Chinese, reading aloud sucks), so I can do something not particularly thinking intensive to try and distract myself from my nerves until I'm needed.

want to add "很多人以为自闭症有悖于好好生活。" (A lot of people incorrectly believe that autism contradicts with a good life, ish.)

Just learned that 卡=lag, that's cool, but the reason for learning (apparently the meeting room and video are laggy for some people) is less cool.

It's a good thing we did transcript because of the lag. Captions wouldn't have solved the lag problem, though I do still want to get those done. I have less time pressure on captions than we did on the transcript, so that's good.

At the bit where I say "my carrying my computer around isn't because I want to be able to play computer games whenever I want" in the video, I typed "(I also like to play computer games)" and that got a laugh. Typed in Chinese, of course.

Oh yay, comments so far including folks saying "huh, never realized that" kinds of stuff about the sitting still and not stimming taking the energy we could use for learning.  And needing to learn to understand our body language rather than assuming we have none or assuming it'll be like neurotypical body language.

Still no sign of "not like my child," I am so confused. Happy, but confused.
Also convinced that not like my child is coming in the Q&A, because it's not like that's how things usually go or anything, and it's not like I have anxiety or anything, of course not!(SARCASM on the "it's not like" statements.)

Q&A has a lot of "when did you start typing" and "what'd you do in China" type stuff. Also some questions about kids, and about managing sensory sensitivities. How is there no NLMC I AM CONFUSED.

---------------------------------------------------------------------------------------------------------------------

Note after: No one did the whole "not like my child" thing. I wish that didn't surprise me, because it should be typical.  But I am surprised, and getting "not like my child"-ed at is a common enough problem that We Are Like Your Child exists, and is a thing I contribute to sometimes.

I've actually been asked if I'd be willing to do something like this again. And I totally would. I'd let people share the video, as long as credit to me for actually saying all this stuff and Vivien for translation+transcripting help. It's on Youtube, not captioned yet so still unlisted, but I know Youtube is blocked in China. 

#AAC Awareness Month

It's apparently AAC (Augmentative and Alternative Communication) awareness month all October.

I'm a big fan of AAC. I'm not a big fan of it being considered alternative, rather than just being one more equal way of communicating. I don't much like the idea that it should be an alternative, because that suggests that if you can use "typical" communication, then you should. My oral speech sounds pretty good, superficially, so people tend not to realize just how much I'm not able to do with it.

For example, there's a thing called "fluent in requesting." What this means is having good use of the grammatical structures involved in asking for things. I want, can I have/borrow, could you please, etc. Or in Chinese, 我想要，请给我，可以把————借给我吗？，你能做, and quite a few more. Yeah, I know the words to ask for stuff in two languages.

I usually can't initiate a conversation where I'm actually going to ask for something in either. What I can do is type the request.

Or if I'm having a problem. Maybe I'm overwhelmed. Maybe I feel sick. Even though I know all the words to explain what's going on, again in two languages, I probably can't tell you orally in either. But I can type to explain exactly what feels wrong, and possibly how to fix it. That's a big difference.

It's also something I would never have the ability to communicate if I didn't have access to typing. (For things at a distance and for writing school reports, I've had this for a while, because typing is expected/accepted in both those contexts. For face to face communication, I've been typing part time for about two years, maybe two and a half? I started using writing to cover some of that space before typing, but my handwriting is terrible and if I want my computer to say the words for me I should type it rather than hand write anyways.)

Because of how much typing to communicate has helped me, even though I'm not the picture of a "typical" AAC user most people probably have, I really do support more people knowing about AAC. I'm a big fan of folks knowing that some people type or use picture cards or apps to communicate, and a big fan of folks knowing that some ADULTS do this at least part time.

The adults bit is key too. Most of the AAC awareness stuff that I have seen is parents writing about their kids, professionals writing about the technology they use or the kids they work with, that sort of thing. Very little is actual AAC users writing about their own AAC use. (Ballastexistenz is one exception, and Typed Words, Loud Voices is going to be entirely people who type ourselves, but by and large, the promotion is done by adults talking about kids they are close to, not by actual AAC users.)

This means I am in two categories where people tend not to think of AAC: adults, because who ever thinks about disabled adults who are off doing adult things while also acting disabled; and people with some (in my case quite a bit of) oral speech. I don't think I'm actually rare among AAC users for either of these things, or even both at once, but I know that people like me aren't much of the conversation about AAC use. I know there is a lot of pressure for people with speech to use their speech as much as possible, though, even at the expense of actually communicating.

And finally: I'm a big fan of folks thinking about how much communication is typed when we aren't face to face, and wondering why meeting in person makes the typing somehow "different."

Image is of a jeans pocket, with orange background and orange text that reads "I use AAC." It's a profile picture from PrAACtical AAC.

The Set List

I think rather echolalically at times. I use lyrics a lot for this.

So I've been throwing around in my head the idea of what set list I  would choose for, say, a concert "for autism." Which is totally code to get more people in in and then hit them with reality in the form of angry Autistic singers. (Mostly Autistic singers- there's a couple songs  I think should be a mix of Autistic and non-autistic singers or just a non-autistic singer, depending on choral arrangements (a cappella is awesome) or more typical band with lead singer sorts of arrangements.)

So, in order:

1. Numb, by Linkin Park.
2. Strangers Fate- first verse and chorus (possibly with first verse of One and Only for a medley), by High Tide, now known as The Saturday Nights. As far as I know, there are no publicly available recordings of Strangers Fate anymore, but here's a link for One and Only.
3. The Jumper, by Third Eye Blind. I think this song should be either mixed or non-autistic singers.
4. People of the Sun, by PONS (another name High Tide/ The Saturday Nights have gone by.)
5. King of Anything, by Sara Barellis. Specifically, I want the version used in the Loud Hands Project video. And to have the video part (not audio) going in the background. Synchronization would get interesting.
6. I'm not sure if I want to finish with Defying Gravity, straight up (Glinda would be a non-autistic singer, Elphaba would be an Autistic singer) or with a blending of Let it Go and Defying Gravity, similar to Let It Defy Gravity but not with the exact same set-up. I'd want to end on Defying Gravity, not Let It Go, and I'd do some of the transitions differently. (Also make Let It Go way louder and and more blatantly defiant than it's being sung.)

I'm not entirely sure about the order of Strangers Fate and Numb, because I'm not sure if "basically losing" (Stranger's Fate) or "knows what the goal is and can't see how to get it" (Numb) is the bigger "low point." But it's those two, then The Jumper, which is fairly straightforwardly someone saying "Just leave it all behind and get out, your life is more important than all that stuff." 

After that, we turn around. People of the Sun still doesn't feel like all that successful a rebellion or of fighting back, but we've got denial that the other people know better and the idea of starting a revolution. The King of Anything video makes a really good transition from the bad space prior to there actually being some revolution type stuff going on. There's momentum! And then Defying Gravity (and Let it Go) are pretty direct defiant middle fingers to expectations of what's right and possible. 

Long story short, BRB figuring out the lyrics and transitions I want for my personal Let It Go/Defying Gravity Medley to close with. 

Acceptance Vs. Recovery

So this was actually a bit back, but I've been thinking on and off about my exact intended wording. I've also just been really busy. Taking five classes, teaching one, assisting three others, playing sports, and working on a paper for INSPIRe Student Symposium has that effect.

Anyways.

Think Inclusive wrote an article. This is a thing they do pretty often. This particular one started off by showcasing a poet, which is cool, and then mentioned that he had also been interviewed by a site called Autism Live, which includes language about "recovery." That struck an uncomfortable note with the author over at Think Inclusive, so they asked: "Can Autism Acceptance and Autism Recovery Coexist?" as I believe both title and Twitter text. Definitely Twitter text. 

I responded, as I am wont to do.

.@think_inclusive Re autism acceptance and autism recovery coexisting: LOL NOPE. Recovery=pass for NT, lose recognition of passing effort. 

I mean, the problems are more numerous than that. But the idea that if you act "less autistic" in public, no matter how much effort that takes, you therefore are "less autistic," potentially even "not autistic anymore," is kind of at the root of some icky stuff. Including the idea of recovery from autism, really. Because how else has recovery from autism ever been defined? Seriously, when has recovery from autism as a concept ever been defined in a way other than "this person is no longer acting in ways that person X finds to be obviously autistic," with no regard given to the amount of effort required to do so?

I'm gonna go with never.

Sure, there might have been times when people interpreted that "evidence" to mean that things more core were changed too, but even that isn't consistently happening. It's an idea of autism as some set of external stuff in how we act, rather than a more internal thing of how our minds work.

And I have plenty of criticism for the goals and concepts of passing for neurotypical, beyond what I'm putting here. But.

Autism acceptance involves teaching autistic people as we are, accepting that our minds work... however they happen to work (that's not even necessarily consistent over time and between energy levels within a single autistic person, many of us have multiple modes of thought, but there are some patterns in how autistic people's minds tend to work.) It involves saying, "This person is always going to be autistic, and we're going to work on skills that are compatible with their autistic self, in ways that are compatible with their autistic self, with goals matching their goals." It views growth into an Autistic adult as the goal.

Autism recovery views growth into a non-Autistic adult as the goal.

I think that's a pretty core difference: autism acceptance says that an autistic child will grow into an autistic adult, and that that's great. Autism recovery says that an autistic child should grow into a non-autistic adult, and that an autistic person being able to "pass" for non-autistic, even if only by the cluelessness of those around them, is the same as being not autistic anymore. These are pretty incompatible ideas.

"But AAC Increases Speech!"

So this is one of the big arguments I see in favor of giving people who don't talk, or who only talk a little, access to augmentative and alternative communication (or, as sometimes I think of it, maybe-actually-working communication. Because most of the time, if parents and teachers are considering AAC, that means that the communication that the person has is not working. Maybe it's a matter of not knowing all the words, maybe it's a matter of other people ignoring the behavior side, there's always multiple sides in a communication breakdown but that doesn't change the not-workingness.)

And people worry that if they let their kids use AAC, their kids won't talk.
Study after study shows the opposite, by the way, that if you do speech therapy type stuff and AAC stuff at the same time there's both a better chance of speech and more speech than if there was only speech therapy stuff. Even just "we're doing speech therapy, here's an iPad AAC app too" increases speech more than just the speech therapy.

But.

Here's my question.

Let's say that a person did decide, after getting their AAC device, that they were done trying for speech. Let's say that a person did decide that typing or picture cards or whatever else just worked better and they were done trying to make mouth sounds.

WHY IS THIS THE THING YOU ARE AFRAID OF?

No, really.

Why?

Where is the problem with this?

If a person is happy with how their AAC device is letting them communicate, which means it's working for them, why the insistence that they must also speak orally? Why the insistence that one method of communication is standard and ideal, while the other is, well, "alternative and augmentative." Why is AAC even needing to deal with the accusation that it could reduce a person's motivation to speak?

Cause I'm not going to lie. My motivation to speak is lower when I can just type. If I feel like I'm on the edge of speech going kaput, or speech is getting tougher, or whatever else? Once speech is an effort much of at all, if typing is an option I really do just go, "Screw it, I'm typing." And I fail to see the problem with that! It's me choosing the method of communication that works best for me, and that should be a good thing, not used as the reason to keep AAC out of people's reach.

Being a teacher who can't always speak

Today, I did something that's kinda hard, and kinda scary, and kinda risky. I told the department chair (so basically my boss, because I'm a teaching assistant and he's also coordinating the course I'm teaching) that I'm not always able to speak. I also told him what my backup plan is for those times (it's a pretty good backup.)

It went fine, by the way.

But I wanted to write a bit about what I think made me so lucky there, because there's some things I was able to pull off that not every disabled person can do, and these are relevant things! And it's not fair, and it deserves talking about. So does the fact that even with all the things I have working in my favor, it wasn't actually guaranteed that I'd get the good result I got.

Thing the first: I did my undergrad partially in this department (and partially in other departments in the same school.) That means that everyone in the department already knew who I was, and most of them actually knew me. I was that freshman who somehow managed to end up tutoring Real Analysis. What this means is that I got the chance to prove my ability as a tutor and as a student before anyone knew that the disabled side also exists.

Thing the second: I don't have big bulky tech that is obviously coded as "for disabled people" on my person... ever. My text to speech is on my laptop, which is a pretty common thing for a college student or grad student to own and carry with them. This means that my assistive tech's status as helping me with an aspect of my disability isn't clear until I start using it for that. I do a lot of other things with my laptop, same as most students do a lot of things with their laptops.

Thing the third: While someone who knows common traits and has a good idea what the tip-offs are for autistic adults will find me not even a little bit subtle, most people don't immediately know that I'm disabled upon talking to me. If they could tell immediately, my "pass for a little bit, then mention that I'm disabled a bit before I need any accommodations" method would be impossible to actually do.

Thing the fourth: I got lucky. Even when all the other things line up well, luck of the draw is still huge. (Luck of the draw may not be enough when the other stuff doesn't line up.) My department chair's initial reaction was to ask what he/the department would be able to do to help, and that I should let them know if I needed anything. I actually don't need much from them: I need them to not take issue if they see me using my text-to-speech in the classroom or if they find out about my using it. I need them to have my back if someone else takes issue with the use of text-to-speech.

What I've got:

1. Departmental not-taking issue and backup if someone else takes issue.
2. Offer that if speech is kaput I can text the office and they'll send another TA over if needed. (Probably not needed, the point of my backup methods is that I can keep teaching even is speech goes kaput.)
3. Statement that if my classroom's speakers turn out to be randomly incompatible with my text to speech/audio output, they'll get me moved into a classroom with compatible speakers. 

That's actually more than I asked for, but it's all stuff that's a good idea on their part. I want to get it in writing because a big piece of this was crossing my t's and dotting my i's to cover my hide from any potential students taking issue, so I will want to talk to disability services, but yeah. Seems to be working OK in my case, and my main issue is "So the solutions on the practicality side all exist, why is this sort of thing unusual enough that none of the classroom media assistance people had heard of sticking text-to-speech into the audio system?" My secondary issue is "So um maybe enough education that the phone isn't the first method of contact suggested for the event of speech going kaput would be good?" Because that was suggested before texting was, and if I can't speak, I can't phone. (Not that I do well with phones when I can speak, but...)

Muchables Chewable Jewelry Review

Amazon's being a little slower than usual about publishing (well within their stated times, just slower than the prior times have been) so I can't do a story announcement yet. But I can tell you about Munchables chewable jewelry, which is actually pretty cool. The person running it posted a bit back asking about folks who'd review, and I said if she was interested in the autistic adult using it themself perspective I'd be game, she sent me a piece, and here I am.

I've got essentially this one, just a little longer because I'm an adult and therefore larger than a kid: custom pieces are totally a thing, and mine is custom: 25 inches instead of 22 inches, longer than kids because I'm not a kid but shorter than the adult ones meant for someone other than the wearer to be the chewer.

Anyways, it's silicone, food grade, haven't tested out the dishwasher-safe yet because I haven't needed to wash it yet, but it looks and feels like it would be. Besides, it's done all the other good stuff, like be sturdy enough to stand up to an adult bite, have a good texture for chewing, and generally working as a stim toy for chewing.

I know the marketing currently leans towards selling to parents for their kids (like, oh, all the sensory stuff ever) but it really does work fine for adults who chew and are willing to wear this stuff. The custom design thing means you can choose something that will work for you, which is nice. I'm gonna go with worth it, and also with I'm bringing it to school with me. Yup. Grad TA with a chewy necklace. (So I might not wear it in class....)

Growing up into an Autistic adult

This is in the Down Wit Dat August 2014 Blog Hop, BTW. The theme is about how disabilities and such are a natural part of life. 

Well, at this point I'm 21, almost 22, so I'm definitely already an adult. I've been working part-time in math education since I was 17, almost 18, and I've done some other kinds of work (research, information technology, physics lab TA.) Also I just read Mel Bagg's What Not Changing Us Means.

When we say we don’t want to change, we’re incorporating all four dimensions in life already. We’re incorporating growth through time into our concept of the thing we don’t want changed. We’re saying “We don’t want to be changed” in the same way that a cat, faced with becoming a dog, would say “I don’t want to be changed.” The cat isn’t denying the important passage from kittenhood to adulthood. The cat is saying I want to grow as a cat, not a dog.

Basically this. (I mean a lot of other things, too, I really do suggest that you read sier post in addition to mine, or even that you read sier post first since a lot of what I'm doing here is responding or building or putting on some of the specifics as it applies to my growing up into an autistic adult, rather than a non-autistic adult.)

But also the responses. A recent New York Times article that I am not going to give the honor of linking because it is terrible (it thinks early intervention leading to a child losing their diagnosis is 1) good, and 2) going to last.)

Basically, it works under the idea that an autistic child growing up into a non-autistic adult is a good thing, which is a social and cultural and otherwise made by non-autistic "experts" assumption about how autistic people should live sort of assumption. It also works under the idea that if you can reach this sort of indistinguishability once, it will last. That's not accurate, BTW. Neurodivergent K talks about that in The tyranny of indistinguishability: performance better than I could, the essential point is that as demands increase the effort needed to emulate them increases and gets even further from autistic needs.

But because autistic development and non-autistic development look different, are moving towards different... slightly closer to stable than in childhood but still always changing adult areas, and because people tend to expect non-autistic development of autistic people rather than admitting cluelessness, there's an idea that we will get less obvious as we grow up when the opposite is more likely to be true.

Back to Mel's words and the cat/dog metaphor for one way that it works:

Quite frequently when they say that they sneak in something about making us into dogs, only they call that part of the growth from kittenhood into adulthood. “Sure, learn about stalking mice and stuff, I’ll give you that, as compromise or something, but hey, wag your tail when you’re happy, not when you’re mad. That’s the right way after all. You can’t deny change. Didn’t I just talk about important skills of the adult dog… er… I mean cat?”

 Don't flap your hands, it's silly/childish. Make eye contact. Use oral speech. Sit still. These are things expected for non-autistic development in the culture of my particular bit of the USA. (Eye contact expectations are hugely variable with culture. Signed languages have a long history, and they have been an acceptable alternative that most people know in quite a few places, for quite a few reasons.)

Because of how widespread those expectations are, I actually did learn to do a lot of that (iffily, badly, actually pretty easy to distinguish from my peers even though I've always, always, even still meet the definition of indistinguishable that Lovaas and co use: placement in a general educational classroom and at least one non-disabled friend, and can we talk about how this definition depends on the person still being a student?)

But.
In growing up into an autistic adult, I've stopped doing some of those things. I've started using the skills that I need for navigating the world as I am, rather than for trying to navigate the world while pretending to be non-autistic. (By Mel's metaphor, I've started switching out "adult dog" skills taught to me as universal "adult" skills for "adult cat" skills that serve my actual needs.)

I carry an AAC device- in my case, either my laptop with eSpeak or my iPad with Proloquo2Text (or just a notepad application when I was in China because I never figured out a Chinese text to speech on the iPad.) I have one of these things and a pen and paper on my person pretty much all the time. A side effect of knowing that I'm covered even if oral speech does give out on me, funnily enough, is that I'm more likely to retain the ability to speak, but that's not actually the purpose of carrying the devices. The reason is that I'm not always able to speak orally, and it's important for me to have a way to be understood even when I can't. My autistic body language, while very communicative for people who understand it, isn't reliable for this because people tend not to understand it. Folks have a tendency not to realize I'm upset or uncomfortable until I've actually melted down, which is too late as far as I'm concerned.

I carry a stim toy, a fidget, whatever you want to call it. It's usually a Tangle, Buckyballs, or a square of satin-bound blanket. Any one of these can take care of my need to be not-still. I've also used knitting and making chain mail for this (the armor kind, not the junk mail kind.) When I'm taking care of my need to be not-still in one of these ways, I'm less likely to pick at my skin, which means my face itches less. That's actually a big enough thing that once I realized the effect was there, it got added to my list of purposes for carrying a stim toy. [As opposed to being more likely to retain speech, which I don't care all that much about.] The original reason was being better able to center myself and also better able to concentrate on whatever I want to concentrate on, which has tended to be school stuff.

I don't dress like most people. I tend to go for either T-shirts and athletic shorts (both out of the mens section) or homemade dresses and skirts. In the case of skirts, the shirt might be homemade too, or it might be a T-shirt. The common factor is comfort- I'm talking about cotton knit dresses, the kind of dress people think of as for kids because adults use more "mature" and not-stretchy fabrics that aren't as comfortable and harder to keep clean. Don't even get me started on stockings. I have refused to wear them for as long as I have been able to enforce this refusal. Actually longer but until I turned 18 I could sometimes be overruled by a parent and that was terrible.

I flap and rock and spin and jump more openly now at 21 than I did at 12. At 12, I was still simultaneously trying to get my weirds read as deliberate and trying to be more typical, more indistinguishable, than is anywhere near sustainable for me to be. At 21, I know that while the "make it look like deliberate weirdness" carries some benefits, it also means people are better able to ask me to change it, which doesn't go well because I really can't. Not sustainably, anyways. I also know that trying to act like a non-autistic adult super-duper not sustainable. That's kind of the reason behind "I really can't" on the changing said weirdnesses.

People tend not to read me as autistic anyways, because autistic... adult? Does not compute. Autistic person with college degree? Does not compute. Autistic person... as the teacher? Computes even less. Autistic person... read as woman? What? That can't be a thing. And yet... here I am. Here we are, I should say, because it's not all that unusual. Fairly sure all those things apply to Neurodivergent K, for one example. Melanie Yeargeau for another. Ibby Grace, too.

But people not attaching the word autistic to the pretty noticeable differences?

1) Doesn't make the differences stop being a thing. I jump, rock, flap, spin, openly stim, etc. I've had at least three broken bones, none of which got diagnosed at the time and one of which was very explicitly a non-diagnosis due to my not acting like I was in enough pain- I went hiking on a broken foot without realizing it was broken. I use language weirdly. I ran a 5k barefoot once. My records are fairly littered with autistic traits that didn't get called that, which means that I had the differences and that they got noticed.

2) Doesn't mean they didn't notice the differences.  R****d was my bullies insult of choice fairly often, and definitely the one they went for when I was jumping and flapping my hands. Crazy and weird were the two "negative" words that anyone had to say about me in high school. One of my college professors commented that I speak in a "unique" way. Chad Stokes (State Radio, Dispatch) still remembers me as the person who ran the 5k barefoot.

3) Definitely doesn't make me somehow not autistic. Seriously, I have no idea how the idea of "If we don't say the word then she doesn't have it" is supposed to work, but something along those lines seems to have been the philosophy that made it take so long for me to get diagnosed. But yeah. In terms of stuff I do in my life, both online and off, I probably do count as that ideal result because I'm in general education classrooms and have friends. The reason I can do those things is that I don't try to act like I'm non-autistic. My classmates and teachers from my year in Tianjin can totally attest to just how obviously autistic I am. So calling "doing stuff as an adult" the same as "not autistic anymore" (in metaphor, calling "adult" the same as "adult dog") makes zero sense. Actually negative sense.

I'm an Autistic adult doing things. Not a magically-not-autistic-anymore adult because I am doing things. Seriously. Should. Not. Be. That. Hard. To. Accept.