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.

"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.

Alyssa Reads: Critical Studies of the Sexed Brain -- Communication thoughts

I continue my thoughts from reading Critical Studies of the Sexed Brain. Because I had more and then forgot to put them up here. Go me.  Here's the citation again if you want it:

Kraus, C. (2012). Critical studies of the sexed brain: A critique of what and for whom?. Neuroethics,5(3), pp. 247-259.doi:10.1007/s12152-011-9107-7  

And now the quote that got me thinking:

“Critical neuroscientists frame the question of a science gap between neuro- and social scientists, experts and the public, just as couple's guides conceive of the gender gap in terms of unawareness, misunderstanding, or ignorance, promoting the idea that all matters can be settled through enhanced communication and better knowledge of each other's distinctive language, culture, needs or concerns.”

This needs more attention paid to it. Here is a big issue: there is a power imbalance. Patriarchy is a word for the imbalance in the couple's guide, and it would relate to the sciences one too since hard sciences tend to be thought of as men's fields while social sciences are thought of more as women's fields. (Accuracy of this thinking is another issue, but STEM in general runs man-heavy.)

That contributes to the rhetorical positioning of the fields, where neuroscientific “facts” can't be questioned by social sciences, even if questioning the facts isn't exactly what's going on. Sometimes it's questioning the causes and interpretation of the reported result rather than questioning whether or not the result was correct, or reproducible. Though the fMRI study of a dead fish is relevant, and so is the fMRI of the same person daily for about a year – fMRI is not infallible, no more than any scientific procedure is, and pretending it is will get us into trouble.

The author then asks about “lay expertise” from patients, relatives, and activists. Since I'm studying neuroscience but came from the Neurodiversity Movement before I got into neuroscience, I wonder where that puts me. As a neuroscience student, I'm one of the science people. As an Autistic person, I'm somewhat a patient. (Not much of one, haven't been in therapy related to autistic traits for a while, but when I write as an Autistic person, I go in that category.) And there is definitely a power difference between the roles. There has to be, for Theory of Mind to have been interpreted to mean autistic people can't understand our own experiences. Not everyone making use of the word thinks that, but it's an interpretation I've seen way too much of.

The author then points to this framework as “preventative politics,” where it keeps the peace by avoiding/assuaging conflict in the name of interdisciplinarity. She argues this could prevent good science that would come from controversy. I'd agree, but also say that it can involve silencing of ideas that aren't status quo as part of the peacekeeping.

Another issue with the focus on communication is that it only works if everyone is acting in good faith. It's the same problem with Nonviolent Communication and similar: if everyone is acting in good faith, it works fine. If anyone involved is actually seeking to maintain control or to do harm, consciously or not, it's not going to work. If one person's goals actively exclude the other person's goals, better communication can lead to figuring this out, but not to solving the problem. Seeking to expand the domain of one's own field without worrying too much about the domain of anyone else's field could lead to a similar failure in interdisciplinary communication ideas.

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.

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!

Dear Neurotypicals: What if you use your words?

If we don't use our words, we won't be indistinguishable. (What's wrong with saying, "use your words"? Many, many things, including the part where it's ignoring communication that you actually did understand because you didn't like how it was phrased. Thanks, Neurodivergent K.)

But it's not just about words, is it? Once we're using words, you want them to be the "nice," polite words that don't challenge your ideas of how the world works. You want them to be your words, not our words. You want them to be in the right tone, which is, again, polite, and definitely not angry or demanding. (Why is it only called demanding when we're demanding to be treated as human, not when you're demanding we do things like make eye contact or stop flapping?) 

And then you want us to understand all sorts of things from your communication that weren't actually conveyed in words. So how about this: USE YOUR WORDS. Not your tone, not your social codes about connotations and extra layers, not your body language. If we don't get to use ours (the different ways of flapping mean things, didn't you know) because you won't understand, or you'll pretend not to, because you want us to use our words, then guess what? You can use your words. 

Your tone of voice is not inherently easier to read than mine. Your body language, with shifts in how you stand, is not inherently easier to read than my flapping. Your facial expressions are not inherently easier to read than mine. Your layers and layers of meaning behind your words conveyed in all those things are not inherently easier to understand than my flapping and grunting, and in fact they are a heck of a lot more complicated than my statements that mean exactly the words I said. 

And yet. You get to tell us to use our words, and this is somehow completely sensible. It doesn't matter that we've got a disability that literally makes it harder for us to use our words. We have to use them anyways, and it's not even our words we're really supposed to be using. We, on the other hand, don't get to give you the same demand: most of you all don't have any disabilities that make language use harder, and those of you who are demanding we use are words are usually doing so in a language you're fluent in too. That doesn't matter. Some huge percentage of your communication is happening through not the words, so have you considered using your words? 

Alyssa Reads Uniquely Human: Part 3

I'm now reading Chapter 2. The previous part (Chapter 1) is here, and the start of my reading Uniquely Human is here.

I think I've put my finger on one of the things that's been bugging me. Yes, we go on to (at least partially) reframe the ways the students Dr. Prizant describes are acting, but it's still a behaviorizing (or sometimes partially behaviorizing) portrayal. The behaviorizing portrayal is then followed by investigating motivations on some level, but we're still starting with the standard tropes.

It's part of the general theme I've been coming to, where this is better than most autism narratives (I haven't thrown the book at the wall!) but there's a lot of "has a good idea but doesn't quite follow through on it."

Another example is the big idea of not thinking of autism as a bunch of symptoms/deficits. Yes, this is a good idea. But then, re: echolalia:

In children who can speak it is often among the first indicators to parents that something is amiss in a child, when, instead of responding or initiating with the child's own language, the child echoes words or phrases borrowed from others. (37).

Reaction the first: Uh isn't that describing a symptom or deficit.
Reaction the next: I think original language is what's really meant, echolalia is our language for a lot of us... (see also my echolalic poetry, here, here, and here. Really want to argue the recombinations aren't my own language, even if the pieces are echoed?)

Parents apparently worry that echolalia will mark kids as... quirky. Yeah, I've got a complicated relationship with that word. (Comparative and deceptive) safety, erasure, "soft" disclosure, so many meanings behind that word.

I'm not sure why the part of trying to stop echolalia that is worse is the part where it's on the path to learning more "standard" communication (what I assume he means when he says learning to communicate and connect, since he's said in other spots that echolalia is communcation) as opposed to the part where it's silencing current communication (which he also points out as a problem.)

In this chapter I finally get to see advice from an adult on the spectrum cited as such, where he's learning from us as the experts he says we are rather than from (more humanized than by most clinicians) objects of study. The tendency has definitely been to treat us as subjects that he observes, which, yes there's useful stuff to be gained from observation but it took a while to get to the "actually using information you can get by asking us" for a book that calls us experts.

I really do approve of his pointing out that for none of the children that he worked with was echolalia actually meaningless. This is important! He studied this fairly heavily, it seems, and I would love to grab the citations because as much as echolalia as communication is one of those things autistic adults have been saying since ever, I don't know of too many clinical/academic citations to back it up. Finding that we use echolalia for all the same reasons and functions neurotypical folks use more "standard" language for is a handy thing to be able to cite.

However: If we're going to call echolalia part of language/a language, maybe we shouldn't call it a path to acquiring language, with no modifier on language? Echolalia really can be a path to acquiring non-echolalic or less-obviously-echolalic language, but 1) it's made of words and 2) serves the purposes of language so it's already language, so we should really note what kind of language it can be part of acquiring. I'd like to point you to the last three full paragraphs of "If you don't use your words you won't be indistinguishable" now. Really the whole thing but those last three paragraphs are what's most relevant to my points here: less-obviously-echolalic language is not the same thing as not-scripting or not-echolalic language. It's often a defense to make the echolalic nature less obvious, because folks will often assume the speech is meaningless if they know the speaker is autistic and they recognize that it's an echo/reference. (As opposed to neurotypicals apparently being clever when they make references?) Privileging language that you can't tell is echolalic, whether or not it really is, ties in to that same problem. Stop that.

Similarly, we don't take our "turn" in the coversation by merely echoing and "not really respond" (47). Remember that echolalia as studied and described here is 1) made of words and phrases and 2) serves the purposes of language so it's already langauge and is a response. That doesn't mean it's not useful to break long and complex sentences into smaller chunks. It is. Doing so gives us a larger library of phrases to work with and recombine, if nothing else (and it probably helps with understanding in ways that make recombination easier anyways.)

Then we get a story where Dr. Prizant asks a student why they do something. Yay, asking us. (So when I started reading Folk Psychological Narratives, which I swear I will eventually finish and then poke holes in the places where it doesn't follow it's own logic when applied to autism either.... the point is Hutto repeatedly emphasizes that the best way to get information on why a person acted as they did is to ask them. There are times where that could not work, but autism is not inherently an exception.)

In Justin's story, I think that there is some interesting framing of motivations, or some interesting motivations, even if the actions are good. Justin was getting nervous, and he was scripting (and the script was noticeable because it was not normative for the situation,) seemingly out of anxiety. So:

To replace this unusual greeting with a more conventional one, his parents prepared an index card with reminders of what to say in social situations. (49).

So we're doing this to replace the unusual greeting? Not to ... help with the anxiety? (Which could absolutely have a side effect of a more conventional greeting happening.) Interesting priorities there. If we're doing it because of the greeting, that really is trying to get rid of autistic behaviors because they're noticeably autistic. If we're doing it because in this case the script is a sign of anxiety, we're trying to help reduce a source of stress. Rather different goals.

Continue to Part 4 here.

Between the Lines/Communication Theory and Practice

I think it's fairly common that people read "between the lines" as part of communication. Understanding that this is a thing which happens is definitely part of my skill set. Knowing what information people are pulling from words left unsaid . . .  not so much.

(Similarly, I don't usually get what folks are hoping I'll understand from between their lines.)

I'm not always sure how to handle this, because there are a few dimensions to this problem.

Piece the first: My communication style generally involves giving lots of information. If I know that a thing I want to do (even, and perhaps especially, if I'm excited about the thing, because then I'll have thought about it more) has some tricky bits, and you ask me about the thing, I am going to tell you lots. This includes telling you where I think the tricky bits are going to be. This does not mean I don't want to do the thing.

This is one of my communication quirks where I have some idea who is going to be confused, and how they are going to be confused: anyone from a culture where pointing out how something is "inconvenient" or similar is an (unspoken) no is going to think I'm saying no, I don't want to do the thing, when actually I'm probably working through how to do the thing. (Yes, this caused a lot of problems when I was in China.)

Dealing with the mismatch is a bit trickier than understanding it exists, though. I can give overall less information under some circumstances, but it's not going to work when I'm looking for advice (because then whoever I'm asking needs to have enough information to give helpful advice), when I'm tired (because then I tend to revert to my natural communication patterns), or when it's literally my job to provide information. Other people can learn how my communication actually works, but this is really only practical for people who interact with me frequently. (Ex: Most of the professors I've had for smaller classes have a good idea how my communication works, as do my teammates for frisbee an most of my classmates. However, the other instructors for the class I taught this semester, who I really only interacted with at instructors meetings, don't.)

Piece the second: Silence, or not responding, is taken as having meaning in face-to-face conversations, generally beyond "I'm still thinking about what you just said" or "I'm not actually capable of speech right now." What extra meanings there are depends a bit on the context, but even among people who know my ability to speak can give out, very few will guess that as a reason for silence. (One professor who I've had for five classes does. I think he's it, though.)

I'm not entirely sure how to deal with this one, either. The ways people react to me definitely change with the order that they get information in: as far as being considered competent goes, it's in my best interest to keep the fact that I lose speech sometimes private until it's relevant (meaning until speech actually gives out on me.) I don't always do that, because that's not my only concern and because there are other ways I can signal competence (plus when you're a graduate student it tends to be assumed.) So I can tell people that speech giving out is a thing that happens, and that it's not a big deal, and that if I'm not answering them verbally that's quite possibly what's going on. There are some risks involved in doing so, but I can do it. That doesn't mean it avoids the communication issues: plenty of people know I can't always speak. Most of them still attach the context-typical meanings to my silence, which means my disclosure isn't very effective.

Those are the pieces that are at the tips of my fingers right now, but there's definitely more. I still remember (and laugh about) the time that a friend of mine took "I'd love to but I'm not sure I can because I've got a presentation that afternoon" to mean "I don't want to join you for lunch [that afternoon when you're on campus]" and was therefore really confused when 1) the presentation got cancelled and 2) I still wanted to join him for lunch. Oops.

#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.)