Note For Anyone Writing About Me

Guide to Writing About Me

I am an Autistic person,not a person with autism. I am also not Aspergers. The diagnosis isn't even in the DSM anymore, and yes, I agree with the consolidation of all autistic spectrum stuff under one umbrella. I have other issues with the DSM.

I don't like Autism Speaks. I'm Disabled, not differently abled, and I am an Autistic activist. Self-advocate is true, but incomplete.

Citing My Posts

MLA: Zisk, Alyssa Hillary. "Post Title." Yes, That Too. Day Month Year of post. Web. Day Month Year of retrieval.

APA: Zisk, A. H. (Year Month Day of post.) Post Title. [Web log post]. Retrieved from

Saturday, October 31, 2015

#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.)

Wednesday, October 21, 2015

(Sometimes) Wearing Pride on My Bag

I am fairly open about being Autistic, about using AAC (Augmentative and Alternative Communication) both online and offline. Fairly open. When I am a student in a classroom, the teachers know, and most of my classmates usually know too. As an athlete, my coach knows and my teammates are aware if they remember. As a person on my college campus, people who look at my backpack may well see the buttons -- usually.
Purple backpack with three buttons on it."Our homes not group homes" is obscured by glare, while "disabled & badass" and "I USE AAC" are legible.

As a teacher, my supervisors know. My students don't.

Or at least, I haven't told them. I put some thought into arranging my schedule so that speech is still working while I teach, face-to-face, in the classroom. I don't tell them that speech going kaput on me can happen sometimes, so if it ever does happen, they'll be finding out it's possible right as it happens. I don't tell them I'm autistic. I only tell the ones who are seeking accommodations and seem nervous about it that I'm disabled at all, and the information they get is that I am also registered with disability services. Not that I'm autistic, not that I use a speech generating device part time, not that I can't always speak.

I take the buttons off the back of the backpack before I go teach, and I put them back on after class.

I know full well that my department would back me up if some of my students found out that I'm disabled and decided to take issue with it, and I suspect that most of my students wouldn't take issue, but there are some chances I am not ready to take.

My buttons represent my disabled pride. I remove them to teach because pride is an act of bravery, and I only have the energy to be brave some of the time. Not all of the time. 

Sunday, October 11, 2015

Educational experiences interview

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Friday, October 9, 2015

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.

Wednesday, October 7, 2015

Computer Assisted Translation and Cognitive Interpretation

This semester, one of the three classes I'm taking is a programming class meant for scientists, rather than for computer science majors. (I'm only taking three classes! What is this?)
This is pretty cool, because it means I'm with other graduate students, and also everyone realizes that they need more programming skills than they have.

Our final projects are all supposed to relate to our research, if at all possible. As a masters student in math, I don't have official research with my department currently, but I do have research interests through the disability side of things. I'm interested in cognitive interpretation, like what Neurodivergent K is describing here, and in treating disability-related communication barriers as translation problems. (Sign interpreters totally already do this, so this is not a new idea, not on its own.)  In full generality, this would be a huge project and nowhere near appropriate for a semester, but by taking a smaller project, like applying one already existing translation-related technology to communication barriers similar to those I face, I can hopefully get somewhere this semester.

I'll be looking at Computer-assisted Translation (CAT), which already has software to support it. The idea behind computer assisted translation is that sometimes you need to translate a sentence, phrase, or communication similar to one you've needed to translate before. The software that is assisting the translation finds similar phrases that have been translated before, finds what their translations were, and suggests those translations.

Because the translation or interpretation that a cognitive interpreter is doing is between a "standard" dialect and the (non-standardized) communication patterns of a disabled person, we can't really draw on most already existing translation histories. However, relevant translation histories could be created. It may well be possible to give the software some translation history based on the interpretations of a human interpreter, and because certain communication traits are more common among people with particular conditions, it may be possible to create "starter" or "default" translation histories that come with the software. I think that including translations or explanations of common internet language uses would make sense, as one example -- many Autistic people, including myself, are echolalic, an plenty of us tend towards code mixing rather than code switching, which means we may well use internet language in contexts where it won't be understood.

I could also try to bring in comparable corpora, which is something I've been reading about in Comparable Corpora and Computer-assisted Translation. The idea behind comparable corpora is that when people are writing or speaking on a given topic in their own language, this reads and sounds different than translations from other languages do. By using texts on similar topics which were originally in different languages, we can have translations with less "translationese" in them. I think bringing in comparable corpora is unlikely this semester, but that I do want to incorporate it eventually.

Interfaces could also be modified to better match with use by people whose disabilities affect communication and who might not be experienced at translating documents between "standard" languages. (I have some translation experience for personal use, so I do know that this sort of experience is not mutually exclusive with communication disabilities.)

I found one computer assisted translation program, Virtaal, which is free and open source, written in Python, the language we're learning in the programming class. Because Virtaal is a many-file program with a graphical user interface, there's a lot going on in that program that I don't understand yet. My project is going to be based very heavily in learning to understand the code for this already existing program, which I'll then try to make some modifications or additions to over the course of the semester. I'd like to do even more with it later -- I want this software to exist already, and I want it on my laptop, fully functional, now. That's why I'm trying to build it!

Friday, October 2, 2015


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

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

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

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

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

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

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

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

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

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

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

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