The Intersectional Infinity Summit

Today, I presented at the Intersectional Infinity Summit. Twice, actually. 

First, I talked about "Exploring AAC as a Student & Educator--Communication Access & Accommodation." Then, I was on the panel, Why Autistic Acceptance is Essential. Spoken language was working for me at the first presentation, but not at the panel, which I think is kind of funny because it meant I used AAC for the presentation that wasn't about AAC. 

Because I used AAC for the panel, I have a record of everything I said during it. That's below, but slightly out of context: 

My name is Alyssa. My pronouns are they, them, theirs. I am a white human with dark brown hair in front of a blurred background.

 I am at yes underscore that too on Twitter. I can speak some of the time but not all of the time. I use augmentative and alternative communication when speech does not meet my needs.

I am definitely autistic and aphantasiac. I may be neurodivergent in other ways too.

If a question is addressed specifically to me, please wait. If it is addressed to multiple panelists, someone else can go first while I type.

I sometimes call April “autistic hell month.”

I do my best to ignore April. Last year my dissertation defense in April kept me busy. I could not pay too much attention to Autistic hell month because I was too busy trying to become Dr. Zisk.

This year I have a survey active during April so I do not get to ignore it. We started sharing it before April because I knew many autistic people would be too tired to participate once April got underway.

(BTW, the survey: Words matter. What words do you prefer when talking about AAC and the people that use it? Fill in this survey and tell us your preferences. https://www.surveymonkey.com/r/3NMXCHG
You can also help by sharing the link to the survey.)

 

If you are thinking about doing an awareness event but do not know where to find autistic experts to help you do it right or do not have the budget to hire one, remember that there is the option of Not Doing An Event.

 

I prefer resources that treat neurodivergent characters as human characters who do things for human reasons. Learning to understand the actions of different others and their reasons through stories is possible, if the stories give reasons beyond 'because they are broken in this named way.'

If you read a story about a person who acts for reasons, it’s easier to understand that story if you 1) might have similar reasons for action, and 2) would get similar effects from  similar actions. Both conditions can be violated in cross-cultural communication and in cross-neurotype communication, but you can still try.

 

No amount of evidence that an intervention can achieve a goal I do not have will magically turn into evidence that it can achieve the goals I do have.

 

I think about connections between cross-neurotype stuff and cross-cultural stuff: we can learn how to do cross-neurotype communication better from the parts of cross-cultural communication that are done well. And we can see that the problems are not unique to neurodivergent people.

I noticed overlap between my experiences studying abroad and my experiences as an autistic person. However, I got more leeway for my differences when studying abroad than when people assumed it was all about autism. This is common for white neurodivergent people.

We know we're different. You get a say in how we understand that difference, but trying to pretend we're the same won't go well.

Literally Speaking About Not-Always-Speaking on Autistics Speaking Day

This Autistics Speaking Day, I presented at the American EducationalStudies Association conference on my paper, “Am I the Curriculum?”

Given the origin of Autistics Speaking Day as a response to a Communication Shutdown event, telling neurotypicals to get off social media for the day to simulate and empathise with autistic communication difficulties, I think giving this literal speech on Autistics Speaking Day was fitting.

Autistic people often use tools like social media to support our communication. I believe that our doing so should be considered as the communication support it is, just as augmentative and alternative communication (AAC) researchers do for people they recognize as needing AAC. (I also think speaking autistic people should be recognized as needing AAC. Heck, AAC for everyone. Let's not depend on speech language pathologists specifically, or outsiders in general, to recognize communication difficulties that AAC could help with.)

I use social media to support my communication. That's literally what I'm doing with my blog. That's literally what Autistics Speaking Day is. The Internet is, so often, our lifeline. I am no exception to my statement that speaking autistic people can benefit from AAC, or that social media is part of this.

So speaking about my experience as an AAC user, as someone who often has to use tools other than speech (like social media, but not only social media) to communicate, on Autistics Speaking Day, seems fitting. Advocating for AAC for everyone, which I've said before and will say again, on Autistics Speaking Day, seems fitting.

And speaking back to the awkwardness of entering professional spaces as an autistic AAC user, to advocate for these changes, to advocate for increased access to AAC for us? Yes, that's part of Autistics Speaking Day too.

That AAC on a plane story

I want to talk about a thread that's going viral.

I just had such an affirming experience. On my 8hr intl flight back from a conference, I sat next to a father/son. In broken English, the father began to apologize/warn me that his ~10 yr-old son had severe nonverbal autism, and that this would like be a difficult journey. 1/

— Rachel R. Romeo (@RachelRRomeo) August 28, 2019

My problems are not with Rachel, but I do have problems.

Problem the first:

I tried to see if he was stimulable for a communication board. I started by pulling up some standard images for basic nouns on my computer but I could tell that screens really bothered him. So I summoned my god-awful drawing skills and tried to create a (very!) low-tech board. 4/

— Rachel R. Romeo (@RachelRRomeo) August 28, 2019

Rachel doesn't think this kid's been exposed to much in the way of communication therapy. I don't know about therapy with a focus on speech, but given the father's confusion and how fast the kid responded to a low-tech communication board, I'm quite sure he hadn't been exposed to AAC before.

That's a problem. Yes, thank you for introducing communication supports. As an Autistic AAC user doing AAC work, I am appalled and horrified that people are reliant on a chance encounter with an SLP on a plane in order to be introduced to AAC. Communication access is a human right. I'm glad Rachel got seated next to this father/son pair, and I'm glad she introduced AAC. She did the right things in a situation that should never have happened. There should have been communication access years ago.

By the end of the flight, he had made several requests, initiated several times, & his behaviors had reduced quite a bit. The father was astounded – clearly no one had ever tried an AAC approach with him. I gave him the paper & showed him how to use it, and he nearly cried. 6/

— Rachel R. Romeo (@RachelRRomeo) August 28, 2019

I'm happy for this family, that they have AAC now. I'm sad for this family, that this is what it took. A chance meeting with an SLP on a plane.

And you know what else concerns me?

People are sharing this like it's a heartwarming story. It's a terrifying story. Imagine how many doctors and therapists failed this family, that communication access rested on this chance encounter. Imagine how many people still don't have communication access.

This is, in fact, an important story. It's an illustration of just how dire the situation is for autistic people and our families trying to access the human right of communication. We are being "served" by people who don't know to consider communication board, who don't know to consider AAC. We are being "served" by people who see a non-speaking person who grabs things and assumes the way to go is to try to control the "behavior" rather than to provide other ways to communicate that they want those things. And we are being "served" by people who presume that non-speaking means non-thinking.

And no, I don't mean people who presume that non-speaking means intellectual disability. Non-speaking people with intellectual disabilities can use communication supports. I mean people who assume there are no thoughts worth trying to communicate, that the primary "service" needed is control over the person. It's a problem whether or not a non-speaking person actually has an intellectual disability.

So, share away. Just remember it's a story about years of communication denied and systemic problems. It's a story about a kid who didn't get to have his communication honored until he was about 10, who had his attempts at communication treated as "challenging behaviors" instead of attempts at communicating sans speech. It's a story about a chance encounter, and it's a story about everything that had to go wrong for that chance encounter to matter. This is no better than the high school robotics team making a prosthetic for a kid whose insurance denied it: good for the team, but remember why it was needed.

Share this story as an illustration of what's wrong in our system, not just as a story of one person who did a good thing.

I'm apparently an #AAC talk example.

I took a class on augmentative and alternative communication in fall 2017. It was a tiny class, with only three students, which made it practically an independent study. Pretty early on in the class, I watched this video.

This quote stuck out, just a few minutes in. “Sometimes we find ourselves on the floor or under a desk because that's where somebody wants to be.” The context? The speaker is talking about how there aren't any prerequisites for AAC use, including behavioral prerequisites. 

I laughed, and then I got worried.

I laughed because I spend quite a bit of time on the floor, possibly under a desk. I hung out under my cloak, under the table, before my measure theory (graduate math class) final exam. I tend to sit on the floor when given the choice. People in the wearable biosensing lab (the lab my major professor runs) don't just know to look for me under a table if I'm in the lab. They know which table I'll be under with my laptop and whatever I'm reading, or with whatever object I'm doing emergency sewing on. My advisor is quite used to the fact that I sit on the floor during my meetings with him. 

Essentially, I represent this statement. I am the student who is often on the floor or under a desk. I'm also studying for my PhD in neuroscience and passed my comprehensive exams last week, so I'm generally not in too much danger of being denied access to communication based on behavioral prerequisites. (I am at risk of being denied access to communication based on the fact that I can usually speak well, so people could assume I'm faking when I need AAC. That's a problem, but it's a different one.)

My worry is for the people who are in danger of being denied access to communication based on ideas about prerequisites. I understand what it means that a kid hanging out under a desk is the example given here. I have to assume people have been denied access to communication systems for "behavioral" reasons including a tendency to sit on the floor or under desks. I even have to assume this is common. Otherwise, there would be no need to explain: yes, you can get on the floor or under a desk while working on communication supports, if that's where someone wants to be.

That's scary. I know my making it through school has a lot to do with my being passed off with the idea that "gifted kids are weird." I know how easily it could have gone differently. I've written before about one way it could have gone wrong: failing special education kindergarten. 

What about all the people where it did go differently? What about all the people for whom it's still going differently?

"They aren't having communication breakdowns"

I've heard plenty of arguments about why AAC isn't needed. Thankfully, I hear most of them in the context of people explaining what they do when they encounter them, rather than the context of people trying to tell me not to type to communicate. Today, Dana Neider, the blogger behind Uncommon Sense, gave the keynote for AAC in the Cloud today. She mentioned one that I hadn't heard before and I wasn't really expecting to encounter.

“They aren't having communication breakdowns.”

Now, I've studied a foreign language. I suspect many, if not most, of you have as well. I took Mandarin Chinese for 11 years (ages 11-21), and spent a total of a year, including the entire last academic year of study, in China. By the definitions set by the American Council for the Teaching of Foreign Language, I reached Superior proficiency for reading, writing, and listening, and Advanced High for speaking. This was hard work! Guess what's in the explanation of the Advanced High proficiency level? That's right. Occasional breakdowns that are based in language proficiency. (They don't talk as much about breakdowns that happen for other reasons.)

The next level up, Superior, is supposed to be equivalent to a college educated native speaker in terms of what you can say. (We're not expected to actually sound like one. Accents exist and every culture has its own common expressions.) So. One step down from a college educated native speaker, we're still talking about occasional language proficiency related communication breakdowns. And you want me to believe a K-12 student never has any? Sorry, but no. I don't buy that. I've met kids ever in my life. Heck, I've been a kid ever in my life.

Or. I'm a teacher. Trying to explain new concepts to people is literally my job. Do I use more than just speech to do this? Absolutely. (I presented at this same conference, about AAC in the classroom, for teachers who need AAC.) Do I experience communication breakdowns in the classroom on occasion? Again, absolutely. Of course I do. Students aren't sure what question I'm asking them. I'm not certain what question they're asking me. Communication issues always, always, have at least two sides. It's neither just me nor just them. If a tool can help either side, or both sides, repair the breakdown, still take it.

Besides, can you honestly say no one's ever misunderstood what you were trying to tell them? In the last few days, weeks, months, have you never been misunderstood, or misunderstood someone else? No one even got your coffee order wrong? Really? Because I got asked if I wanted a hamburger, and then got handed a cheeseburger when I said yes. I eat hamburgers, but not cheeseburgers (texture issues.) That's a communication breakdown right there. AAC wasn't required in order to fix it, but it happened.

So. We've established pretty well that I am 100% certain the person making this argument is wrong, not just in their conclusion, but in their premise. I don't think they're lying, but they're incorrect. Their student or client is absolutely experiencing communication breakdowns. Why don't they know?

1. Their client or student doesn't have the needed communication access in order to say they're having communication breakdowns. I know, from experience, that if I need to use speech in real time, I'm not going to be able to correct most misunderstandings. It's just not going to happen. So you might not even know there was a misunderstanding. Give me AAC and I have a shot. Which, of course, now means you know there was a problem. That's actually progress!
2. They've learned from experience that trying to repair communication breakdowns isn't worth it. Have you ever decided not to address a misunderstanding because you thought it wasn't worth it, or that it wouldn't work anyways? I know I have. And yes, I've done it in an educational context, with points for a class on the line. This past fall, even. In an environment where I had access to AAC and could totally have typed for the conversation. I didn't think it was worth the time or energy it would take, so I let it slide. Imagine that attempts to repair communication breakdowns mostly haven't worked in the past. How often are you going to try, even if the option is available?

Neither of these are reasons to skip the AAC. The first is actually a reason to provide it. The second … AAC won't fix this problem. However, if communication needs not being met was part of why past attempts at correcting misunderstandings didn't work, proper access to communication (likely including AAC) can have an effect on the decision-making process here. That doesn't mean they'll always decide to tell you about misunderstandings. Do you try to correct every misunderstanding you ever encounter? Or do you let some things slide, especially if you don't know someone well or don't trust them to change their mind even given the proper information? Besides, plenty of disabled people have reason to mistrust therapists. We might not want you to have the "correct" information! So providing AAC may or may not lead to you knowing about communication breakdowns when they happen, but if you think there aren't any, that just means you're missing them.


TL;DR: Everyone has communication breakdowns sometimes. If you think your client or student doesn't, that means you're not finding out about them. Maybe they literally can't tell you for communication access reasons, or maybe they've decided it's not worth trying to repair the breakdown. Make AAC available anyways.

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.

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.

This semester, I'm taking a class about Augmentative and Alternative Communication (AAC). There are videos. I do something like liveblogging while watching them, just into Open Office. Now the results are here.

So here's the video:

Augmentative and AlternativeCommunication (AAC): Evidence-based Principles and Practice.

And here's what I wrote while I watched it:

Video defines AAC as “the use of customized methods and devices to supplement a person's ability to communicate”

[In class we described low tech as limited messages, but pen and paper or board and marker

HI backup systems are important, variety

“Anyone who is unable to speak, or whose speech is difficult to understand.”

[Intermittently this is me, but I actually do sometimes switch over before speech is totally gone, at the point where AAC is more efficient rather than strictly required.]

NO PREREQUISITES

“Sometimes we find ourselves on the floor or under a desk because that's where somebody wants to be” as a way of noting that there are no behavioral prerequisites for AAC use.

HAHAHAHA HIIIIIIII (It's meeeeeee)

(That's actually concerning that I'm the example here)

(Who didn't get access to communication because of doing the thing I do in grad school?)

NO HIERARCHY OF DEVICES OR SKILLS

Use all the methods. Don't eliminate what's working.

(There are a very few people who can read my body language.)

Least dangerous assumption.

8-12 months in assessment is a while. I get why, I just hope stuff is being tried during that time.

What does the individual want to do? Family and such help and guess if the person can't answer but we want to ask the person. Look at daily life.

Information about prior devices gets lost. So do the prior devices.

Vocabulary to actually have a conversation, rather than only “I want X” is kind of needed to have a conversation.

Is that what the more than just requesting was about? (Also a video on that topic.)

What do you mean by severity?

A question I found on Quora (then answered, but the answer here is longer):

Do people with autism have an understanding of their own condition? If so, why does it not lessen the severity of it?

Now, those of you who have been around my blog a while might know that I am an autistic person, not a person with autism, and that I have reasons for this. That's not quite the point of this question though, so it's not quite the point of my answer either. Poking some holes in the premise, on the other hand? Sure.

I'm autistic. I know I'm autistic. This was not always the case. I used to know I was weird but not that autism was a label that could explain some of my weirdness. (Affinity for the absurd is also relevant.)

I know that, related to my being autistic, I am not always able to speak. Sometimes I can, but sometimes I can't. Knowing that I can't always talk doesn't magically make me always able to talk. (There would be a bit of a paradox if it did.)

However, knowing I can't always talk means I can plan around not always being able to talk. I carry alternative communication methods: pen and paper, text to speech software on my laptop, a whiteboard marker... it varies with the environment. But who looks more obviously disabled? Someone who happens not to be speaking or someone using text to speech because they can't speak? I am taking an action that mitigates an effect of my disability. This action also makes my disability more apparent. Am I more severe or less for doing so? Does the question even apply to my situation?



I also know some patterns about what activities or environments make it more likely that I will be unable to talk. That's a fairly thorough understanding of one piece of how I work, yes? Well, this knowledge means I can plan my activities in order to minimize the chance of speech giving out on me. (Or I can choose not to care, since I very rarely have a reason to care about speech per se. Access to one working communication method matters. That one method being speech usually doesn't. But let's assume, for the time being, that we're dealing with a circumstance where I would prefer to be able to speak.) This planning means I may choose to skip an activity or to leave an event early in the interest of maintaining my ability to speak. If I make this decision (and say why, if asked), does my non-presence for disability reasons make me more severe? Does maintaining my ability to speak make me less severe? Does the question even make sense in my situation?

On an entirely different note, I know sitting "properly" still is difficult for me. I could spend lots of energy doing so anyways (and probably not remember much of what I heard in class.) I could bring drawing or sewing with me. (It looks weird, but it's not obviously an autism thing. These take little enough attention that I'll retain more than I would trying to sit properly still, but enough that it's not perfect. It's often been my best option.) I could bring a fidget toy, marketed to neurodivergent people. Really, it's probably marketed to parents of neurodivergent kids but that's another issue. (I'm a bit more obvious now, especially if I'm also flapping and rocking. However, we've maximized my attention and retention.) So, the more visibly obvious my disability is, the more I'm getting done. When am I "more severe"? When am I "less severe"? What does this question even mean?

I get more obviously autistic (less "visibly high functioning", thanks Dani) when I order my life in ways that make it easier for me to get stuff done.
What do you mean by severity?




Oh, and btw, I totally have a Patreon. Support my tea habit?

Please, autism researchers, study these.

Quite a bit of autism research is what I would call, to put it delicately (as in, I am neither screaming nor swearing at it), abled nonsense. I definitely needed to know that my asexuality as an autistic AFAB is a testosterone-related disorder. I also needed to know that I only think I'm trans (nonbinary to be specific) because autism is an extreme male brain. And it is of the utmost importance that I know I am incapable of humor in any form, but especially sarcasm. Autistic satire is definitely not a thing, right?

Oh, wait. All of that is abled nonsense. So is the idea that the optimal outcome is a loss of diagnosis, by the way. I'm most able to do the stuff I care about when I am visibly autistic rather than spending energy on not being so. Dani briefly achieved so-called indistinguishability, an older "optimal outcome" and it was not worth it. (Also I'm the friend.)

I would like to see research that is not abled nonsense. I especially would like to see more of this research being done by autistic people, because no, I don't think we need neurotypical people interpreting the results in order for them to be valid. I'm with Nick Walker here: when we depend on less-marginalized researchers to "discover" our hard-earned truths, we're reinforcing the idea that the knowledge we've figured out for ourselves as a community isn't valid. Which communities get to have valid knowledge?

That said, there are things I'd like to see researched more. Not necessarily in the current structure (because let me tell you, I expect someone like, oh, nearly any non-autistic autism researcher who presented at the Coalition on Autism and Sign Language where I threw myself into a wall repeatedly, to make a complete mess of the topic.) And preferably by autistic people with experiences relevant to the topic.

1. Inconsistent speech and AAC support for autistic adults.
   
   I'm an adult. I can speak (usually.) When I can't speak, I use AAC. AAC research seems to be focused on two groups: adults with neurodegenerative disabilities, and young children. Autistic adults who can sometimes speak and sometimes not are neither of those categories, but there's a lot of us. This might be more common than "always has speech" is, among autistic adults, but thanks to behaviorist approaches and the assumption that "can sometimes" is identical to "can consistently" given a sufficiently strong motivator, professional types tend not to get this. I would like to see research on what supports, including AAC, tend to make communication easier/more effective for us.
   
2.  Employment supports that are neither sheltered workshops nor "we think they're all good at technology" start-ups that might pay well but are still pretty segregated.
   
   Sheltered workshops can (and often do) pay below minimum wage. Autistic people, like all disabled people, are more likely to live in poverty than abled people. Are these facts connected? You bet! Programs like Specialisterne, on the other hand, are founded by (usually parents) based on a stereotypical idea of "autistic strengths" that usually means technology work. Or Microsoft has a program to hire autistic workers now. These can be useful, if you're an autistic person who wants to be working in technology. I worked an IT job for a while. It was a good experience in many ways. I also never want to do that again. I like writing. I like teaching. I like art. I've earned money on all these things (mostly teaching) and would happily continue to. These are not the specific jobs you're going to come up with if you're a non-autistic person trying to provide employment support for autistic people.
   
   So maybe, just maybe, we need to take a look at employment supports that are not limited to a specific kind of job. (Or, you know, look at more kinds of jobs? Because the needed supports will vary based on what kind of job it is.)
   
3. Burnout.
   
   After reaching some ideal of indistinguishability and hanging out there for a little bit, or just after the demands get to be too much even if we were never indistinguishable, we can hit a breaking point. Then everything is way harder, we have way less energy, and our abilities shift. Sensory overload might be more of an issue. What can we do to make this less likely to happen? What supports would help a person going through this? People dealing with this have written about it, both during and after. Getting some idea of what tends to help us vs. what tends to make things worse would be great for anyone who deals with this in the future. Even better if we can help people not have this happen. Burnout is not fun.

Legal protections and shaky ground

I have, I think, finally figured out why I felt less safe, not more, after turning in a formal accommodations letter for the first time this past summer. (That was nowhere near the first time I've had those same access needs I've got the letter for met at university. It was just the first time I had to turn in the letter.)

It's a pattern. When I just turned the letter in, without asking first if the professor cared about the letter, I didn't feel less safe after turning it in. (Note to self: Maybe stop asking, since some will care.) When I turned the letter in with a comment of "don't know if you need this or not, but here it is anyways" and I got a response in the area of "thanks but yeah, don't need it," I felt more safe than I had before turning the letter in. But it was the same amount of more safe that I've felt the times the answer has been that the professor doesn't care about the letter.

Which makes me suspect that the letter itself is less than relevant. My having the paperwork to prove I am entitled to "accommodations," as they like to call it when my access needs are met, that's not the issue. (Seriously, y'all aren't changing anything about the class structure when I use AAC, it's important and it's apparently unusual but I don't want to talk about my typing as something that you're accommodating me specially to allow.) My turning in said paperwork is also not the issue.

Depending on an often inaccessible, bureaucratic process that requires a probably-abled "expert" document that I really qualify for the diagnosis I'm claiming accommodations under in order to access my education and my work, on the other hand? That's an issue. Having said process done so it can back me up on the off chance I need it is useful. I'm glad those legal protections exist. They're important. They're good to have as backup. But I don't like relying on the backup any more than the next person. And I'd much rather have access happen because it's what should happen than because some paperwork says it legally has to happen. Or that some part of it legally has to happen -- my paperwork says I get text-to-speech, and that's actually my least-used AAC solution. 

In which I flip through my textbook and react to something

I'm taking a course on motor speech disorders this semester. (Was this a good life choice? We'll find out! Were my other classes this semester good life choices? Again, we'll find out!)

The text, for anyone wondering, is Motor Speech Disorders: Substrates, Differential Diagnosis, and Management, 3rd edition by Joseph R. Duffy.

"The decision to use AAC strategies is based on careful assessment of speech and communication abilities and needs, the prognosis, and the individual's potential to benefit from them." (387)

I guess?? I mean, I have to assume that's the way it's professionally done. In my experience, the decision to use an AAC strategy is made in the moment when speech isn't working right now and I need to do something. My first several decisions, the first several times I used it, were certainly immediate and uncareful need something now choices.

I'm in a Chinese language classroom in Tianjin, the teacher just asked me to speak, and I can't. I need to do something. I pull out my iPad (good thing I have it today!), open Notes, switch the keyboard to Simplified Chinese input, type something quickly, and hand it over to the student next to me, who reads it aloud.

I'm in measure theory on Yom Kippur (I fasted, but still went to class) and the professor asked me a question. (I don't remember now what the question was.) I can't speak. I don't have my computer or iPad with me. If I write in my notebook, it'll probably be mistaken for ignoring the question/continuing to take notes, because I was taking notes before and he doesn't know speech goes out on me yet. In any case, that's not likely to meet my immediate need. So I reach for a whiteboard marker and start writing on the side board.

I'm not waiting for someone to evaluate how much I can benefit from an AAC solution while I can't speak. I'm just ... not. That's not a thing. I'm getting into situations where I need something now, and I may or may not be grabbing the best solution. It hasn't carefully evaluated by an expert. I'm grabbing the first solution I can think of given my environment. My decision to acquire dedicated applications for AAC on my iPad and laptop was a bit slower and more considered. I didn't look into those options until I realized that speech giving out on me was going to be a regular thing (honestly had been a regular thing for some time, I'd just not communicated with language while speech was out before.) I asked around. There wasn't any sort of formal evaluation. (Though one might have been handy.) Has anyone expert looked at, well, any of my set-ups? Nope. That hasn't happened. Could they come up with something better as long as they recognized that I really do AAC? Probably.

I'm not certain if this is a commentary on how usually verbal and fluent-seeming autistic adults don't get the assessments for communication supports we could use, or if this is a commentary on gatekeeping where someone other than the disabled person is deciding whether or not to implement AAC. Maybe it's both.

I'm moderating #USSAAChat: AAC and the workplace!

The US Society for Augmentative and Alternative Communication (USSAAC) runs a twitter chat on the second Thursday of each month, at 7pm EST. I'm moderating the next one, on January 12. The topic is going to be AAC and the workplace. This is important to me because I'm a teacher (sometimes TA) and I use AAC part time. I know many adults who use AAC, including at work.

I do plan to make a Storify of the chat afterwards. If you would like to participate but do not want to have your tweets included in the Storify, feel free to let me know. You can reach me on Twitter, or you can email me: alyhillary (@) gmail (.) com.

Here are the planned questions:

Q1: Let's start with introductions. Who are you? What is your relationship to #AAC (and the workplace)? #USSAAChat

Q2: What #AAC systems and supports are used in your workplace? (Including by the folks we don't usually think of as AAC users!) #USSAAChat

Q3: What do you consider when choosing #AAC systems to use at work? (vocabulary, grammar support, output methods, other things?) #USSAAChat

Q4: We all communicate in many ways. How do you combine communication methods (including speech) and supports in the workplace? #USSAAChat

Q5: If you could design #AAC systems to use at work, what would you want? (visuals, grammar options, customizability, others?) #USSAAChat

Q6: How could your workplace better support #AAC use? And what is already being done that supports AAC use? #USSAAChat

Q7: I know I missed things. What do you want to say or ask about #AAC in the workplace that I haven't asked about? #USSAAChat

What's Apraxia? Oh. #AAC

Today I went to the Assistive Technology Conference of New England. My advisors brought me there. It was pretty cool. I had some conversations that I was glad to have. One of the sessions I attended was Kate Ahern's session on literacy and Augmentative and Alternative Communication (AAC). Pretty early on, she defined apraxia and noted that many AAC users and generally folks who can't necessarily talk have it. So here's how she described it:

Apraxia is "an inability to perform learned movements on command even if understood, there is a willingness to perform and the skill has been previously learned."  It's "worsened by anxiety, illness, stress, and demands."

So here's the thing. I know how to speak. In fact, I know how to speak two languages, English and Mandarin Chinese. My speaking ability varies from "no mouth sounds are happening" to "clearly fluent in the current language." A whole lot of in-between possibilities also happen, including fluent speech while needing someone else to initiate the conversation/prompt the speech, fluent-sounding scripting but no off-script speech, and slow speech that gets pushed out one word at a time.

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

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

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

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

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#AAC and the day taught lab without speech

After just over two years teaching, it finally happened. I had to teach, and speech wasn't working. This is for a lab class, introduction to digital circuits, and for the sections I work, there's three of us in the room. There's the professor who is generally in charge of lab for the class, and there are two teaching assistants. I'm one of the assistants. So I'm not alone in charge of the room anymore, though I am still one of the people in charge. People tend to assume that the folks in charge can communicate via mouth sounds, and I usually can ... but not always. I've usually been able to plan so that speech is working when I teach, tutor, or present ... but not always. This was the first time it happened as a face to face teacher.

Now, I'd thought of quite a few ways to handle this ahead of time. For me, competence at anything has to include competence at doing the thing while speech isn't working, and this is now my third year teaching face to face. It's a lab now, and it was a lecture before, but the general idea is similar. I need to be prepared for speech to give out while I'm teaching, because if I keep teaching long enough, eventually I will need to teach while speech isn't working.

I thought I could write on a white board. In some classrooms, I probably could. It didn't work out in the lab. There's one white board, and it's not near the lab counters that people are working at. Helping a student with their set-up while running back and forth to the white board every time I need to say something isn't practical. Since I'd been in the classroom before and noted where the white board was, I wasn't completely shocked when this didn't work and did have more back-ups, but the white board marker has been my go-to for a while. The white board, after all, is my most used communication board. 

I thought I could carry my iPad and use one of my communication apps on it. In some classrooms, I probably could. I think this would work fine in a lecture style class, since lots of teachers use iPads and projectors nowadays. It wasn't practical in my lab class, because the iPad is frankly ... too big. Space is at a premium at the lab benches, and my iPad doesn't fit in my pockets.

I had no illusion that my laptop would be the answer in the lab. Typing into a word document and projecting my screen to the front of the room is something I've done before -- it's what I did when I presented at Autcom without speech, and it works fine when there's a projector I can hook my laptop to and I can be at my laptop. That doesn't work when I need to move around a lab where even the iPad is a bit big for my purposes.

Which brings me to pen and paper. It's a writing solution, just like the white board marker is, but it's a bit more portable because paper is smaller than a white board. I use blank 4"x6" index cards to print my reading notes, because a note card system similar to the one I was taught in high school works well for me, except for the part where my handwriting is terrible and will eventually make my hand hurt. Still, if I slow down enough it can be read, and that makes it a viable communication option when typing might not be.

So I put a pack of index cards in one pocket along with a pen, and that was my communication solution. If a student had a question that required a linguistic answer, I pulled out an index card and wrote on it. I then left the index card with the student when I went on to help the next person, which meant they didn't need to remember my answer. They could go back and read it again if they needed to. This seemed to work quite well, overall. There were a couple students who thought they could skim my answers instead of reading every word of them (seriously, these answers were 1-2 sentences, read the whole thing) and then got told by one of the other instructors to fix the problem that I'd just told them about, which was a bit awkward. (I underlined the relevant words from my original answer and waved the card at them at the same time that the other teacher started telling them about the problem with mouth-sounds.)

Other moments from the class:

• One student asked if I'd lost my voice. I wrote, "Approximately." She said that sucked. "Not really." But ... "It's my normal. I'm not concerned." That's so sad! [I point back to "Not really."]
  *Sigh* She was definitely following my lead on the assumption that I could teach while not speaking, but seemed to have some trouble with the idea that my being disabled and prepared to teach while disabled was not sad or needing pity.
• The teacher who runs all the lab sections for the whole course asked me if I was OK. "Yeah, I'm fine. I'm autistic and sometimes speech doesn't work." She circles "autistic" and says she'll need to look that word up. I turn the card over and start writing 自闭症 on the other side. She goes "Oh!" Sometimes the fact that I read, write, understand, and sometimes speak Mandarin Chinese comes in handy. She doesn't seem particularly concerned by the fact that I just disclosed a developmental disability that has lots of bewareness campaigns around it, and she does realize that I'm working with students and successfully helping them while speech isn't working. 

So that was that. For something I spent two years being worried about (and being prepared for) this was rather ... anticlimactic. I'm not surprised, really, but it is a relief that it finally happened and now I know from experience that losing speech in the classroom as a teacher is not a big deal. Students were fine, fellow teacher type people were fine, nothing is exploding, metaphorically. Literally... a few LED bulbs blew, but not based on my advice!

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.

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(Formal) Accommodations

For the first time in my life, I have formally turned an accommodations letter from Disability Services in to a professor. My accommodations are done "correctly," with proper paperwork from the abled people who make it their business to document those things.

Despite all my opinions on the abled bureaucracy gatekeeping access for disabled people (where are your handlers, where are our papers?) I thought I would feel safer, more secure, with that bureaucracy at my back. The person in charge of disability services likes me. A lot of people at this university do. I thought I would feel safer in knowing there was someone besides me who would at least theoretically defend my accommodations, even if getting it to happen in practice didn't seem likely. (More likely for me than for most-- see also: the person in charge of disability services likes me.)

I was wrong. I don't feel safer.

I don't mean in comparison to how safe I felt in the math department, where I didn't turn in my letter because everyone know and trust me. Besides, everyone got that my accommodation would be totally useless to someone who didn't need it anyways. When speech is usable at conversation-typical speeds, the right to use AAC, either writing or typing, instead of speaking is not going to provide an advantage. Very few people write or type faster than they speak. Regardless, the bigger portion was that the professors know me. They trust me to 1) be able to learn the material and demonstrate in the written homework and exams that I understand it, and 2) know what I do and don't need. So they never asked for my letter.

I mean in comparison to how safe I felt in class 1) not having disclosed at all, 2) having said I'm autistic but not mentioned any accommodations, and 3) after having had the conversation about accommodations but before forwarding the Disability Services letter about said accommodations. How safe I felt increased as I progressed through those steps, and then dropped as soon as I sent the letter in.

You see, I'm taking a statistics class this summer. I'd never met the professor before the first day of class. She's nice, she's friendly, and she even pointed out that accommodations are a thing when going through the syllabus, which most professors don't do. (They have to have a disability statement on they syllabus, and that statement is generally pretty boilerplate, copied from other professors or semesters. They don't need to announce it in class while going over the syllabus and usually don't.)

I talked to her during a break during class. I let her know what my accommodation is (typing/text-to-speech or writing) and she was cool. She suggested that in addition to the in-class solutions I already had, I should always feel free to email with questions after class. I'm pretty darn sure her reaction to my disclosure is not the reason that going through the "proper" accommodation process with my paperwork leaves me feeling less safe than not doing so.

So what is it? Anyone else have this experience? I'd love to have more idea of why I'm feeling this way.

#AAC Awareness Month: When speech output isn't best

First, an explanation of the abbreviation. AAC stands for Alternative and Augmentative Communication, and it's the fancy professional word for how disabled people communicate when we can't talk or when speech alone isn't meeting our communication needs. I've written before that I'm not a huge fan of it being considered alternative because that implies speech as a default. I still have that issue. However, I am a huge fan of people knowing more about the ways we communicate when speech isn't working or isn't enough, and I am a huge fan of better support for folks who use communication methods other than speech.

I am usually able to speak. I am often highly verbal. I am reasonably fluent (but not always speaking) in two languages --English and Mandarin Chinese. I am definitely literate, and I type about 60 good words per minute. That's not typical conversational speaking speed of typing, but it's still pretty fast, at about 85th percentile of typing speeds overall.

I have several methods of communicating when speech isn't working. Two of them have speech output: eSpeak on my laptop and Proloquo4Text on my iPad. These two see the least use of all my AAC options. Not the most. The least. It's not because these are the wrong sorts of speech generating devices for me, either. I have iPad, laptop, or both with me most of the time as a college student. As a quick typist with little use for visuals and a good understanding of language in general, typing out what I want to say is faster than searching for saved phrases. Word and phrase prediction are handy and can sometimes speed things up, but Proloquo4Text has that capability.

It's not that these are the wrong speech generating devices for me. It's that my speech generating devices are not usually as effective as my other AAC options, in the environments where I spend most of my time.

That still leaves the question of what I do use, because I absolutely don't just stop communicating when speech stops working! And I don't hide away, either. I still go to class. I still present at conferences. I still go to sports practice, and I still get on the field and play points in Ultimate (Frisbee) tournaments.

In my math classes this semester, I sit in the front row all the way to the right. Because of the classroom set-up, I can reach a side board from my seat without needing to get up. I carry a white board marker, and if speech isn't meeting my communication needs, I'll uncap my marker and write on the side board. I came to this solution when speech went offline unexpectedly in measure theory (one of the math classes I'm taking this semester) and needed to improvise. Since then, I've brought the iPad to class a couple times and even tried to use it once. I've found the board to be the better choice.

I also write on a white board in my office, in my classmate's offices, and in the graduate lounge. I answer questions about our homework assignments and have full conversations this way, just not very loudly since writing on a white board is nearly silent. I tutored someone in real analysis (senior math class) writing on my office white board once as well. The white boards in the math department get quite a bit of use from the times when speech isn't working for me.

Picture of me writing "This is my most used communication board" on a white board. My shirt reads "My other disability is a bad attitude." 

Take yesterday for an example. Two of the lights in my building started to flicker, and completely predictably, this did a number on my ability to talk. As soon as I saw the first light, I reported it (seriously those are a safety risk, photosensitive epilepsy exists, my losing speech is nowhere near the worst thing that could happen because of a flickering fluorescent.) I also knew that I needed to make sure I had a workable communication method other than speech at all times for the rest of the day. As it turned out, speech stuck around until about 1pm, then I got it back briefly around 2:40. It went kaput again right before 3 and came back around 4, after which it was iffy but extant for the rest of the day. Two of the three no-speech hours, I wrote on a white board to communicate. Writing on a white board is definitely my most-used "AAC."

It's also something every single one of my colleagues does as a supplement to their communication when teaching, but it doesn't go under the "augmentative and alternative communication" umbrella when they do it. I think that's because it's not alternative or unusual for a teacher to write on a board while speaking, but it is unusual for a teacher to write on a board while not speaking.

After writing on the white board, my most-used communication method is probably Flip Writer, on my iPad. This is an application designed for use as AAC, unlike the white board marker which was not designed with disabled people in mind. When I'm having a conversation one on one, probably sitting down, where it'd make some degree of sense for us to be on opposite sides of a table, I'm using Flip Writer. Yesterday, when I wasn't expecting speech to stick around, I brought my iPad to lunch with a professor. (Lunch wound up being the last thing I did before speech went.) I actually used Flip Writer yesterday before seminar to talk to a classmate, and I used it at Autcom to order food at a restaurant when I couldn't speak.

Next up is regular old pen and paper. I've used this at ultimate practice a couple times to talk to a captain or the coach, and I've used it when I didn't have the iPad with me and either didn't have my laptop or didn't want to take it out for something fast.

Now we get to my speech generating software. I tried Proloquo4Text once in measure theory. Once. Technically it was after class had ended, but everyone was still in the room. I tried it for one sentence and went straight back to the white board I could reach from my seat. I do use Proloquo4Text on the side lines at Ultimate (Frisbee.) I also used it meeting with my department chair when I needed a permission number to register for measure theory. I typically use Prolquo4Text when I'm in a small group, want to address everyone in the group, and don't have easy access to a white board.

I use eSpeak for similar reasons to Proloquo4Text, under similar circumstances. The big differences between eSpeak and Proloquo4Text are that my laptop takes more time to set up than my iPad (point for Proloquo), my laptop has a physical keyboard while my iPad does not (point for eSpeak), eSpeak doesn't have word prediction (point for Proloquo), and eSpeak can generate speech in Mandarin Chinese (point for eSpeak). Proloquo4Text currently can't do Mandarin, so this probably the biggest reason I use eSpeak. It works with Chinese. (So does Flip Writer.)

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.

When I Am Using Text To Speech

I've written a bit about my use of text to speech software as a form of augmentative and alternative communication. On my laptop, I have eSpeak which does English pretty well and Chinese poorly (but extant!) On my iPad, I have Proloquo4Text. I really like having the ability to type and pull saved phrases, because there are phrases I use frequently and there are phrases that I might not remember I have the option of using unless I see them. (Setting boundaries of No, I can't/won't do the thing or asking for help are the parts where I might not remember I can do that.)

There's some articles around on how to do communication with AAC users, which is cool and a nice starting point, but folks are going to have different preferences related to how they use their AAC and how others interact with them. Thus, I'm tossing my personal set out there, in no particular order.

1. When I am typing, this is not always equivalent to "gathering thoughts," but it's usually close. If you were talking before I started, go ahead and finish. This isn't me starting to talk yet. Just don't do "I see that Alyssa has started typing so I will now start talking" and we're probably fine.
   
2. As a corollary, since we're not treating my starting to type as the same thing as me talking, we're all the way not treating it like that. If I start typing before you finish talking, This is not me interrupting you. It's not me interrupting you until I hit "speak" on whatever I wrote while you're still talking.
   
3. There might be times when I interrupt. Just like I might when I'm speaking with my mouth. It happens! Especially if there's an emergency, but also because in natural conversation people do sometimes interrupt each other.
   
4. Once I hit speak, if you start talking before the software finishes, you are interrupting me. Are there times in normal conversation where that could happen and be OK? Sure, and I'll judge it the same whether I'm using my mouth or typing. But let's not pretend that it's not happening. (The existence of a replay button on Proloquo4Text means I may less annoyed by an interruption than if I were speaking, unless I have reason to believe you're only interrupting because I'm using AAC, in which case I probably think you're being terrible.)
   
5. If you wouldn't finish my sentences when I'm speaking, don't try when I'm typing.
   
6. Unless I am turning my device around to show you what's on the screen and you're moving it to see it better (I don't always know what angle is best for showing someone) don't touch my device. It's doing the job of my mouth/vocal cords/etc.
   
7. Talk to me, not around me.

Long story short, there's some practical questions like "When can someone else touch the device?" and "What does "starts typing" count like?" but we should be looking at a fairly typical conversation.