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.

Dimensionality Reduction

Dimensionality reduction is something I deal with in math, statistics, and engineering. It comes up in my research. The idea is that when data is complicated, because there are a lot of different kinds of information in it, we can make our lives easier by considering fewer variables. Sometimes we pick from the variables that are already there. Sometimes we smush several variables together and create new ones out of the results, then pick from those. Either way, it can be useful to reduce the number of variables, the number of dimensions, that we need to deal with in a complicated pile of data.

However, we lose information when we do so. Like everything else engineers need to do, there are trade-offs involved, and we need to recognize that. Dimensionality reduction means simplification, which can make large amounts of information easier to deal with. But over-simplification makes information less useful.

Using disability and access needs as an example:

I use a much more complicated thought process to decide what I can and can't do on any given day than people who know me might use to guess what I might and might not be able to do. This includes deciding when I'm just done for the day.

My major professor works with me in an environment (our lab) where my losing speech is most likely due to sensory triggers. If I lose speech due to sensory triggers, I'm leaving the environment where it happened. She knows that if I can't talk I'm probably going home. This is an appropriate simplification for the context.

However, when I was a graduate student in math, I most frequently lost speech in classes where I was a student because I'd already taught that day and I'd essentially run out of mouth-words. Nothing bad was happening, and nothing bad was going to happen because I stuck around and kept doing math without speech. My classmates and professors knew that if I couldn't talk, I was probably going to grab a whiteboard marker and start writing on the board instead. This was an appropriate simplification for the context.

Those are both examples of appropriate dimensionality reduction. In the lab, "can speak" vs. "arrived non-speaking" vs. "lost speech in the lab" was a 3-possibility variable that made a decent proxy for how I was feeling and how well I could work. In the math classroom, whether or not I can speak wasn't an important variable. 

Ignoring the variable of whether or not I can speak in the lab would mean ignoring useful information. Using the variable of whether or not I can speak in the math classroom might mislead people into finding patterns that aren't really there. So it's important to choose the right variables to focus on!



And yes, this applies to functioning levels. In addition to being ableist and grading against a neurotypical standard (which is its own, major issue), functioning levels attempt to reduce all the complex information about a persons abilities and needs over time and across a variety of contexts down to one dimension. That's always going to be inappropriate dimensionality reduction, simplifying what we know to the point that it's useless. Talking about low, medium, or high support needs isn't going to fix this problem. Neither will talking about low vs. high masking as if either of those means a single thing. Those still use a single dimension, and you can't shove enough information about what those support needs actually are, or what the specific effects of masking are into a single dimension for it to ever work.

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?

Let's talk about fidget spinners and patterns.

Fidget spinners are a fad. Thinkpieces about fidget spinners, therefore, are also a fad. That's how it works, right? On one side, there's people who are arguing that these are toys (true), that they are a fad (true), that they can distract some people (true), that there is not research showing improved focus from their use (true), and that they are not an accessibility issue (false). On another side, there's people arguing that they are a focus tool for some autistic people and/or people with AD(H)D (true), that the lack of evidence is due to a lack of research and not a statement of inefficacy to use against individuals who find them useful (true), that this can be an accessibility issue (true), and that their fad nature among neurotypical students is bad (false) because it is getting the toys banned (mixed truth value). I've also seen more nuanced views, generally from disabled people, but those seem to be the two main camps.

I want to point out a pattern in how accessibility discussions go, especially in educational contexts.

1. A disabled person needs something for access reasons.
2. Abled people call the thing distracting, because our existence in public is apparently distracting.
3. The thing is either banned entirely or permitted only for people with the paperwork to prove they need it for disability reasons.
4. Disabled people who need the thing either don't have access to the thing or must out themselves as disabled in order to gain access. If outing oneself is required, the thing is heavily stigmatized.
5. Disabled people who have an actual access conflict with the thing are erased entirely, which makes conversations about possible solutions to the access conflict impossible. One set of needs or the other will "win." Any disabled people who need to avoid the thing are lumped in with the people who want to ban the thing for ableist reasons and therefore vilified. Which set of needs "wins" here varies, but it usually has some relationship to hierarchy of disability stuff and having one set "win" while the other "loses" is a bad solution regardless.

That's not just a fidget spinner thing, but it does apply here. With fidget spinners, autistic people and folks with ADHD (I'd love to know of a reasonably recognized way of talking about this neurotype without the second D/in a neurodiversity paradigm way, btw) end up in both the "need the thing" and the "need to avoid the thing" groups. I assume some other neurotypes are similarly split as well - I just don't have the familiarity to assert so. With visual alerts on fire alarms, D/deaf people need the thing. Since the visual is a strobe, a lot of neurodivergent people, especially people with photosensitive epilepsy, need to avoid the thing. With service animals, the folks who use them need the thing. People with allergies need to avoid the thing, and not everyone with an allergy can safely share a space with a service animal, even if they are treating their allergies. Conflicting access needs exist, and this pattern prevents us from finding ways to deal with the conflicts. Instead, one access need gets lumped in with abled people who don't like the thing because it's associated with disability and therefore presumed not to be a real need.

Now for fidgets: some people need something to do with their hands while listening if they're going to retain anything. I am in this group, by the way. In high school, I knit, I sewed, and I made chainmail - armor, not spam. I've also tried drawing, which takes care of the "need to do something in order to sit" issue but takes enough attention that I'm no longer following the conversation, so that doesn't work for me in class. Writing hurts quickly enough that while taking notes has sometimes been possible at university, there was no way it was going to be the answer for the duration of a school day in middle or high school. (I, specifically, should not have a laptop in class. If I'm going to need notes it's the least bad option, but least bad does not mean good.) So I did assorted arts and crafts that were fairly repetitive and totally unrelated to class. The biology teacher who told us on day one that he had ADHD was both the most understanding teacher about my need to fidget somehow and the teacher most at risk of being distracted by my making armor in class.

That last paragraph is the "no, really, I need to fidget." It's also the "there are several fidget options that work for me." Most, but not all, of the standard fidget toys will meet my needs, as I discovered because they are also a fad and I got some awesome fidget toys. This is important, when access conflicts come into play - if there are several options that meet the access need of the first disabled person, it's easier to find one option that everyone is OK with. When there are several options that work, requesting "not option A in situation W" is not an access issue, because options B through H are still fine. If we're going to come up with reasons that each of B through H are also not fine, individually, then we're going to have a problem.

The fidget toy fad is making options D through H cheaper and cooler. When fidgets are marketed as assistive technology, they are super expensive. Considering that disabled people tend not to have a lot of money, that's an access issue, so the fad is making a set of possible solutions more accessible. That's cool. It's also leading to a sufficient presence for teachers to make explicit policies about the toys (as opposed to banning them person by person), and for a flat ban to seem like a good idea to teachers who are seeing kids appear distracted by them. (My bet is that the neurotypical students who appear distracted actually are. I expect the autistic and ADHD students who appear distracted are a mix of actually distracted because they are just as distractable as any other student and only appearing to be distracted because of ableist ideas about what paying attention looks like. Remember, I'd fail special needs kindergarten as a twenty-four year old PhD student.) The explicit banning for everyone is ... not so good. Mostly because the other options are usually also disallowed or heavily stigmatized, and then we may well be left with no good options.

And let's not pretend handing everyone a fidget spinner, or any other fidget, is going to magically "solve ADHD" or whatever. I think some of the camp that's firmly against the toys is reaching that position for similar reasons to haters of weighted vests - we hand it over and the person is still autistic, or still ADHD. A tool that a person uses to cope in a less than accessible environment doesn't make them stop being disabled by the environment. Plus a fidget spinner isn't going to help everyone. Some people really will be distracted if they have something to play with, and some of those people really will be neurodivergent. Conflicting access needs, again, are a thing. If one person needs a fidget, and another needs not to be next to someone with an obvious fidget, those two people probably shouldn't sit next to each other. Giving people fidgets that they can use while the toy remains in their pocket is also a possibility in some cases. We can have conversations about access conflicts, if we admit that both sets of needs exist. (We also need to admit that some subset of the people making arguments about distraction are doing the bad faith argument where everything disabled people need is a distraction because, essentially, our presence in public is a distraction.)


[Let's also insert a plug for my Patreon. I write. I have a Patreon.]

Jobs for autistic strengths and "autistic strengths"

Full disclosure: Real Social Skills got me thinking about this with some tweets (first tweet, second tweet, third tweet), and then a blog post, both of which I think you should read. That said, I think my thoughts are parallel rather than identical and it's still worth my writing my bit.

To me, what she's saying reads a few main points:

• Some models of autistic strengths assume that attention to/liking of detail is one of the strengths.
  
• They then assume this means we will enjoy repetitive, detail-oriented jobs most people find mundane.
  
• That's still putting us into different sorts of jobs than everyone else (segregation!) but calling it strengths based and assuming we're all the same.

Since this is May 1 (Blogging Against Disablism Day), I've got some "spot the (dis)abl(e)ism" thoughts. Let's break those down. Here's what I'm reasonably certain isn't ableism:

• Thinking it's a good idea to play to an autistic person's strengths does not read like ableism to me.
  
• Recognizing that some strengths may be statistically common in autistic people does not read like ableism to me.
  
•  Understanding that the jobs we find interesting or want to do may be different from what "most people" find interesting or want to do does not read like ableism to me.

Helping an autistic person find a job that's a good fit for them based on their (autistic, since they are autistic and autism is pervasive,) strengths would also not read like ableism to me It would be helping someone find a job for their autistic strengths. Unfortunately,  the way programs around finding jobs for "autistic strengths" often run ... does have ableism involved.

• Assuming that "autistic strengths" means exactly a certain set of (perhaps statistically common) strengths is treating us as a monolith, and therefore ableism. Not all autistic people are detail-oriented, for example. (I appear to be a lot more detail-oriented than I really am thanks to pattern-recognition.)
  
• Assuming that a given strength will correspond to a given interest is stereotyping based on interests. If you're only doing this in the presence of an assumed disability, it's ableism. If not ... it's still inaccurate stereotyping but it might not be ableism?
  
• Celebrating how we can therefore do these jobs other people find boring and pushing us into those jobs is effectively workplace segregation, definitely stereotyping based on autism, and therefore ableism.

And this is what a lot of autism employment programs seem to be doing. It's not what we need. My jobs? Based on my actual strengths, some of which are a bit stereotypical and some of which are decidedly not. Math? Yeah, I'm good at that and I like it. People tend not to be surprised by that one. Grading? I guess that involves attention to detail, or pattern recognition that makes breaks in expected patterns stand out. Teaching? Seems a bit social, yes? Well, explaining things to people in ways they can understand is absolutely part of my skill set. As a student, I often explain math-heavy neuroscience papers to my non-math classmates in the neuroscience program. As a teacher, it means finding the way to explain a given concept that actually makes sense to my students. I don't think any autism employment program is going to suggest that a person who can't always talk become a teacher, but that's what I do. Editing? I guess it's attention to detail, but it's also language. None of my work has been in areas typically considered "boring," and a lot of the work people consider "boring"? Really wouldn't be a good fit for me. Assuming it must work for me because I'm autistic isn't going to work. I'm an Autistic person, not a machine made of autism stereotypes. 

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.

Day 2 (not) in the inaccessible classroom

Yesterday, lab was bad. Like, I wasn't able to stay kind of bad. And I wasn't too happy about that. Today, I didn't go to the main lab meeting. It was going to be in the same place, with the same noise issue, and I was having none of that. I was also invited to a lab meeting/seminar about an hour from campus during the usual lab time, but I'd have said “sorry, can't go” if there hadn't been a reason I was already preferring to avoid the electrical engineering lab today. I take my teaching obligations seriously, and err on the side of staying to teach even in situations where getting a substitute would really be OK.

But there was a reason for me to skip teaching today, called an inaccessible classroom environment. So I checked with the primary professor, and I got the go-ahead to skip the main lab session in its (unusual) room and go to the seminar. Instead, I was to negotiate a time to meet with a student who needed to use the oscilliscope in our usual lab classroom. The usual classroom doesn't have construction or explosion testing nearby, so this is great. I quite like being helpful as a teacher in ways that I can be, you know, actually helpful.

(I can absolutely be helpful as a teacher while speech isn't working. When I teach for the Art of Problem Solving, everything is always already typed, and that means speech is irrelevant. I've tutored real analysis without speech before. I've even run labwithout speech before. I wrote on index cards, which I left with the students whose questions I was answering. It worked out fine. Speech was not the problem. Continuing sensory assault which prevented me from focusing on a problem long enough to answer it and which was bringing me to the point of meltdown was the problem. Or: An inaccessible classroom was the problem.)

And my meeting with this student wasn't an issue of “well here's some make-work.” She actually needed to use the oscilloscope, and therefore the professor actually needed to find a TA who could meet this student in the lab. Not only that, but there were 6 other students who needed supplies from the lab (extra chips because they need 5 two-input and gates and their chip only came with 4, more wires because the lab needed a ton of wires, that sort of thing.) There were even three other students who came in needing troubleshooting help. So I got a small group of students working in the lab at an hour that worked for me, where it was quiet, providing actually needed supervision. This was good, becauseI don't take well to make-work, not when I can't really work 40 hours in a week and collapse in about a week when I try. I need prioritization to make sure that the work I'm doing is truly needed, not busy work.

In case your wondering where all the reflections on my teaching are coming from: I'm preparing a proposal on teaching while disabled. If the proposal is accepted, I'll have to keep a teaching journal in the spring semester. Since blogging is like journaling but more accessible to me (Julia says this too!), blogging gets me in the habit that I'll likely need to form. Plus I form insights by letting myself write, and that means blogging helps me organize my thoughts in ways that may well help with the proposal writing.

Appreciate my writing? Support me on Patreon!

Silence of Absence

This Autistics Speaking Day, I had to leave the electrical engineering lab I'm a TA for early. It wasn't the professors fault, or the fault of my students, not at all. I did lose speech before I exited, which was literal silence, but that's not an issue. I've helped run lab without speech before. I'm pretty good at making myself understood without speech -- I type quickly, I can write by hand with pen on paper, and as long as you don't incorrectly presume that autistic means no body language, I'm not actually all that hard to read.

This was not the same as the time I successfully ran lab without speech. That day, speech wasn't working because of an event that took place prior to lab. The event was a one-off, not something that continued. This time, the cause of speech-kaput was in the lab. Or below it, to be precise. There's construction going on in the engineering area, including inside some of the buildings. One of the places that currently has loud construction is ... right below the computer lab, where we were meeting. There's apparently also explosion testing near the lab? Bad placement. That meant that the cause of speech-kaput was in the lab. It was also ongoing. If the cause were a one-off event in the lab, I could keep working. I'd be interrupted once, then go back to work and stay working. However:

• Each round of noise (honestly pretty short) was painfully loud, interrupting me and making me jump.
• The amount of time between rounds was unpredictable. Sometimes we'd get several in a row, quickly. Sometimes there'd be enough time to start working again, be concentrating on something, and then get interrupted again. Never enough time to fully recover, but sometimes enough to try working again.

That's a bad combination, and I lasted about half an hour ... of a lab session that's typically three hours. 

After I taught lab without speech, I felt good. Not great, because I was still reeling from the effects of the event that made me lose speech in the first place, but good. I'd done what needed doing, and I'd shown myself that I could teach without speech. 

After I had to leave lab today, I didn't feel good. All too often, autistic people are silenced in conversations about autism by never even getting to be a part of the conversation. It's hard to have a voice (mouth-sounds or otherwise) when absent. And I was absent, because presence was inaccessible. I was silent in an entirely different way than when I was present, literally silent, and still teaching. 

Appreciate my writing? Support me on Patreon!

Switch out the capacitor

This semester, my teaching assistantship is in electrical engineering. (And for as long as I'm a TA instead of a research assistant, I suspect it's going to stay in electrical engineering or similar, since electrical, biomedical, and computer engineering is the department my advisor's in.)

So now I'm one of three responsible people in the room for a digital circuits lab. (All three of us speak Mandarin, which is cool, but not the point of what I'm writing today.) They've both been doing circuits for much longer than I have, which is to be expected since I'm brand new to electrical engineering. Still, I'm a pretty quick study and I have very good pattern recognition, which comes in handy when my job mostly means troubleshooting other people's circuits to figure out what's wrong.

This isn't about my ability to troubleshoot circuits, really.
Unless it is, because I can't troubleshoot a circuit while looking at a light that's blinking at 5-20 Hz. The light is small enough that I'm (mostly) OK with the light near the edges of my vision, but the blinking light is the signal on the circuit I'm troubleshooting, which means it's on the circuit I'm trying to fix. That's not going to work.

"Alright, I'm turning off the power. I can't work with the flashing in my face and you should turn the power off when moving wires anyways."

That's method the first. You've got two reasons to turn off the power (plus "the teacher says so") and one of them is a safety thing they've been taught but tend to ignore. I'm still telling you what my need is (no flashing lights in my face) but it's not the only reason for what I'm asking you to do. I tend to go to this first if the problem seems to be with the circuit.

"Can you switch out the capacitor for one size up or one size down? I know this is the one on the lab sheet, but I can't work with that blink rate."

That's method the second. It eliminates the bad flash rate permanently, which is good, and it lets me leave the light on while trying to figure out what's going on with the oscilloscope. The only problem is, of course, that it's not the capacitor size used on the lab sheet, so I am telling students to not follow part of the directions. Still, why are the directions setting up a circuit that blinks in the most common frequency rate for problems? Seriously, why. Why are they so sure no one who'd have a problem is in the class? (Or, you know, teaching the class. Disabled teachers exist and all.)

Now, here's the bit where being a teacher and being around good folks is helpful: the students listen. I'm not sure how so many people don't realize that flashing lights can be an issue (and I don't blame the students at all for, well, following directions) but no one is arguing with me when I point out that the flashing lights can be a problem for people, including for me. They turn the power off, or they switch off the capacitor. They ask, "Is that a common issue?" and I say "More common than you'd think with how many things flash in that range..." Who knows? They might even remember that flashing lights can cause problems.






Appreciate my writing? Support me on Patreon!

#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!

Disability in the Graduate Assistants Contract

Two years ago, I suggested to my graduate assistants union that disability and accommodations should be covered in our contracts.

I could understand why it hadn't been there before:

1. It's not the sort of thing most people automatically think of unless they are themselves D/disabled or have a disability.
2. The accommodations/access side is theoretically covered by laws like the Americans With Disabilities Act anyways.

But for a few reasons, I thought it needed to be there:

1. Enforcing the ADA is really hard for most people, because it involves filing a lawsuit with the department of justice. Yes, even the threat of a lawsuit can be effective at times, but it generally needs to be at least a semi-credible threat.
2. If it's in the contract, then violations can also be handled by having the union go to bat, such as by filing a grievance. That's got more force than showing up in an office and complaining alone, but is generally easier to accomplish than filing a lawsuit. This is important because many professors do refuse to ensure access for students, and many departments do actively exclude disabled faculty members.
3. Attitudes: If following relevant disability laws is explicitly stated in the contract, even if it is a bit redundant (and as an engineer, I like certain kinds of redundancy, including this particular kind,) tells people that there's a group on campus that cares about the disability side of things, beyond just disability services (who don't negotiate the graduate assistant contracts.) There being such a group is a whole lot more welcoming for folks who find disability issues relevant than there not being any groups like that is!

And one more reason that occurs to me now but I didn't think of at the time:

•  Graduate assistants are both students and staff. Students handle accommodations through Disability Services for Students. Faculty and staff handle accommodations through Human Resources. Where do graduate assistants go, since we're both? That being unclear would be a barrier for anyone who has issues with bureaucracy. So would an answer of "Do both, haha," because that means dealing with two different offices for one issue.  

Well. The executive board for the union agreed, and none of the union members objected. They pushed to get disability language into the contract, beyond the list of thing they're not supposed to discriminate against us for. (And disability definitely belongs on that list.)

Contract negotiations happened. While the university negotiators tend not to like adding information that's already in other places to the contract or even referencing those other places in the contract, they did add a line about disability accommodations.

4.5 Disability Accommodations– The Administration and GAU shall adhere to Federal and State laws and regulations as they apply to treatment and accommodation of persons with disabilities. Requests for accommodations shall be submitted to the Office of Disabilities for Students.

Am I totally satisfied with that? Not completely. I think it's progress, since there wasn't any information about accommodations before. I know that contracts are all about basic compliance and lagal language. I've still got the same issue with "will follow Federal and State law" here that I do with it on syllabus statements and generally everywhere.

Appreciate my writing? You can support it on Patreon.

(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.

Alyssa Reads Uniquely Human: Wrap-Up

I read Uniquely Human, and I went through it chapter by chapter, plus all that material that's not in a chapter. At the end of it all, here are my thoughts:

• This book is still pathology paradigm/behaviorist model. It's just considering that there is, in fact, some rhyme or reason to the behavior and focusing on the cause of the behavior as a way to reduce it. (Same bad model, just using it to say better things.)
• The descriptions of how and why we act are definitely behaviorizing, or at best partially behaviorizing. See Disability in Kidlit here for the explanation of what I mean by that.
• For calling autistic people experts, he really doesn't pull much that's credited as being learned from "an autistic adult said this."
• What crediting of autistic adults happens leans very white, cisgender, heterosexual, educated, and middle to upper class.
• Even the chapter called "The Real Experts" has very little content that is what we say or how we say it. Most of it is anecdotes in which he shows our behavior.
• He occasionally conflates tantrums and meltdowns. There is, in fact, a difference.
• Dr. Prizant is far more trusting of therapies and professionals in general/by default than I can trust or endorse. He may have shared a parents quote about not being able to trust professionals as far as you can throw them, but his writing indicates that he himself does trust professionals.
• I do not even vaguely trust the reader (or really trust Dr. Prizant) on what the "successes" we celebrate are. The goals described read too much like "acting less autistic" (but by reducing anxiety!) in ways that conflate "acting autistic" with "showing distress in autistic-typical ways."
• This book minimizes some major problems: electric shock and other painful punishments are depicted as a thing of the past, Lovaas as one of the first autism experts (never mind that he's one of the people who used shock,) and similar.
• There are times where a trait he mentions is relevant and makes a "lack of social X" argument redundant or unneeded, but he makes the "lack of social X" argument anyways.
• One case here is a students refusal to complete an assignment that he can't make sense of being explained with not understanding that he should make an attempt anyways to please the teacher, rather than "Ok but this is so inaccessible that there is no attempt I can make."
• Also there's the bit where we have a communication disability, and we're pretty explicitly taught not to express discomfort or displeasure, but apparently our not communicating when things are bothering us is because we lack this social instinct?
• There is an overarching pattern where Dr. Prizant comes up with a good point but doesn't follow his own logic fully.
• He writes his dissertation on functions of echolalia (and does research on functions of scripting,) finding that they have all the same functions as spontaneous language, but then aims to reduce scripted speech. His SCERTS model privileges "spontaneous" speech over echolalic and scripted speech.
• He points out some issues with intervention "for autism" in the introduction but still supports plenty of things that are "for autism" later.
• He points out that "unpredictable behavior" usually means that the person describing or observing us doesn't understand the pattern, but still describes things as unpredictable.
• He points out that we might find different things challenging than neurotypical children. He misses that running out of gas faster under higher stress doesn't imply a lower threshold or a smaller tank.
• He argues against portraying autism as a checklist of behaviors, but then tends to start anecdotes about children by... listing behaviors.
• He talks about trauma but also says that our trauma and flashbacks are not PTSD for reasons that he never explains. (If it walks, talks, and quacks like PTSD... it's probably PTSD.)
• He points out that there are good days and bad days, that abilities aren't static. He still treats selective mutism as if it's definitely not a "can't" talk in the anecdotes where it is mentioned, because the person can talk. I can generally speak, but when I stop it's because I can't flipping talk. Though to be fair, if I were to have a conversation with this guy I'd probably type for reasons other than "can't speak."

At the end of it all, there aren't too many people I'd suggest the book for. I wouldn't give it to a parent whose kid was recently diagnosed and who hadn't learned to be all behaviorist yet. I wouldn't give it to someone who knew nothing about autism and knew it. I wouldn't give it to an autistic person, OMG NO WHY.

I would, however, consider suggesting it to an educator or professional (or maybe parent) who had already learned to view autism as a checklist of behaviors and deficits, and who I didn't think was going to stop doing that any time soon. Maybe. Still iffy because of essentially the difference between 1984 and Brave New World: Yes, only one of these is torturing people to control them, the other is quite a bit more subtle in its control and using what people like (along with many other signs of dystopia), but these are both dystopias. One gets into a wrestling match to force eye contact while the other holds a desired toy between the eyes to induce it. Both are pushing for a neurotypical performance at the end of the day. The first is obvious in its abuse, while the second... it's not as immediately and obviously traumatizing but that could make it harder for people to realize the problems and can lead to trauma that others won't believe even was trauma. Both are still dystopias.

Dr. Prizant is teaching people to make a nicer-seeming dystopia and call it accepting autism. It's not neurodiversity, and it's not accepting autism. It is sometimes doing things that make us more comfortable and less anxious, but with the idea that this will make us appear less autistic because autism gets conflated with autistic ways of showing distress.

For folks who'd like to go back and read my more specific thoughts, here's the rest of the series. Note that the part number within my reading is always 1 more than the chapter number because I started with everything not in a chapter.

1. Everything not in a chapter 
2. Chapter 1
3. Chapter 2
4. Chapter 3
5. Chapter 4
6. Chapter 5
7. Chapter 6
8. Chapter 7
9. Chapter 8
10. Chapter 9
11. Chapter 10
12. Chapter 11
13. Chapter 12

Alyssa Reads Uniquely Human: Part 9

Still reading Uniquely Human. Please let it be over soon. (This is chapter 8. There are 12 chapters. I get to The Real Experts chapter after this.) The prior post in the series can be found here, and the series begins here.

Here I say that you are flat wrong, Dr. Prizant: "All parents aim to be the best providers, the most understanding caregivers, and the greatest supports for their children." (157). No. You are wrong. Plenty of parents see their children as accessories or extensions of themselves, and plenty of parents draw on their children for support rather than the other way around or even the give and take that could be appropriate as a child gets older. Don't pretend that all parents are trying to be the best for their children. Trying to appear the best to outsiders is not the same thing. Autistic adults can tell you all about the martyr parent trope, because it's a thing, and wanting to get as much attention as possible for the extremes your kid reaches is a thing whether or not the parent cares if the kids extreme was good or bad. Plus the general issues re: child abuse and erasure that aren't specific to disability. Stoppit.

Now, a parent turning to this book probably is trying to be all those things. Doesn't make this an OK statement.

I won't argue with the statement that "it can be more difficult for a parent to attend to a child's needs when the child is difficult to read" (158). I will point out that that's not, strictly speaking, an autism thing. Autistic parents often have more trouble reading their neurotypical children and less trouble reading their autistic children. Neurotypical parents often have more trouble reading their autistic children and less trouble reading their neurotypical children. That's, at least partially, a cross-neurotype issue, similar to a cross-cultural issue.

I actually do agree that community can be useful for parents, because community can be useful for basically everyone. I think parents need to be very careful what kinds of communities they seek, because martyrhood seems to be contagious and so does dangerous quackery. I'm not convinced I'm cool with a half-full vs. half-empty metaphor with autism, though if you wanted to tell me my cup is filled with a different beverage... (please not carbonated, please not carbonated...)

I am definitely not cool with the primary problem presented re: "direst prognoses: what the child will never do or accomplish." The presented problem is that it's not tender and that it can affect perceptions of the kid. The frankly bigger problem? We're talking about what a child will supposedly never be able to do based on their abilities in childhood, when we already know for a fact they're disabled in a way that means atypical developmental trajectories are a thing. As in, predicting what an autistic kid will never be able to do works even less well than predicting what a neurotypical child of the same age will never be able to do. It's flat wrong. (Autistic development is a thing!)

From the story given for "Insist on Respect" I think primarily he's saying it's important to respect the parents. And when it comes to parents who really are trying for the best interests of the kid? Sure. What about respecting the autistic person? Seriously, the ways these stories are shared (and with enough info that one of my commenters has figured likely real names for quite a few, since the first names don't seem to be changed...) is not consistently respecting the privacy and dignity of the people being written about. I don't care that the parents think trying to pee in the display toilet is a funny story, I care what the kid thinks of it being shared. (This one hasn't got a name attached, thankfully.) Like, yes, these parents are saying they want to be respected as parents and that they want their children to be respected, but just like I don't trust professionals as far as I can throw them, I don't trust parents of autistic kids to trust what is and isn't respectful of those kids as far as I can throw them. Not while they're making public the stories and videos that they do.

OH FOR PETE'S SAKE. WHY ARE YOU CONFLATING TANTRUM AND MELTDOWN. You should know better. You should know better. You should really know better stop stop stop. Also, talk about listing "deficit" behaviors that a parent gets to stop through, apparently theater? I thought you said you didn't think we should describe autism as a list of deficit behaviors? Follow you own logic.

Also I gotta say I mistrust folks following the "gratification and inspiration that comes from helping others." (172). Inspiration porn is a thing. Also, the state director for Best Buddies was all inspirational and such, and she was also the most condescending of anyone I ever interacted with by typing in person. And special education teachers? There are reasons that I don't trust currently practicing special educators, including the fact that they seem to think acting "less autistic" is a good goal. Come to think of it, that's the same reason I don't trust clinicians, including Dr. Prizant, who despite a lot of nice words on top, is totally still writing about "emerging" and reducing scripts and other things that are at best, code for acting less autistic rather than saying it straight out.


Part 10 here!

Alyssa Reads Uniquely Human: Part 8

Still reading Uniquely Human. Still going blarglefeh at behaviorizing descriptions of autistic folks, even when the stuff we're doing is stuff that he's acknowledging has use. The prior post in the series is here, and the start here.

Within the book, I'm now on what he calls Part 2: Living with Autism. I am not even going to try to resist the snark option there. I have a cat named autism and she is soooo hard to live with. And when I was asleep, my autism got away and shaved the dog. Disembodied autism is not a thing. Disembodied autism is not a thing. Disembodied autism is not a thing!

Teachers and aides that we feel safe around or who even help us feel safe when other stuff is going wrong, however, are a thing. One of the teachers who's been like that for me was even a formal special educator. (Emphasis on former here.) She was my residence director in Tianjin, and she was the only teacher or administrator there who didn't panic when I melted down or decide that the meltdowns were tantrums. (She was apparently worried the time that I melted down, was alone, and she was several hours away over a weekend. Which is reasonable, since she had no knowledge of how safe I was alone during/after a bad meltdown. Pretty darn safe, by the way.) I've had a couple others at college, generally mathematics or engineering professors. As in, absolutely not trained in any "therapy" or "behavioral management" stuff "for autism."

What do all these people have in common? They're able and willing to notice both the things that I can do myself and the things I need support with, both my abilities and my needs, at the same time. They're aware that neither cancels out the other.

Concrete example: My ability to speak gives out on me pretty regularly. The first time it happens in front of a given person can be scary, because I don't really know how they're going to react. I'm also a graduate student. My ability to speak gave out on me during a graduate math class with a professor who didn't yet know that could happen, right after he asked me a direct question. (Timing!) I was able to communicate that I wanted a whiteboard marker (standing up and reaching for a marker is reasonably easy to notice, but I couldn't reach it so he asked if I wanted it and handed it to me after I nodded.) I started writing my answer instead. I wound up writing a lot in that class, and the professor was totally able to recognize both that the writing instead of talking was sometimes needed and that I was capable of learning the material. (No, I don't think that should be unusual. But it is unusual.)

I respect that he was willing to include a parent saying "I just want to tell all of you who are parents of young children that you can't trust professionals as far as you can throw them" (138), considering that he is a professional. I've got to wonder how he'd react to autistic adults similarly not trusting professionals as far as we can throw them, and how he'd react when he is the professional we're not trusting, but I've got no evidence in any direction there.

As far as the traits or instincts he's written for who tends to "get It" go:

• I'm cool with the way he describes empathy but still twitch at the word because of Simon Baron-Cohen and Theory of Mind associations.
• I feel like the question re: stimming is likely to be for the purpose of reducing stimming by way of reducing the perceived causes, which isn't cool when the stimming is how we're showing happiness or excitement. (And folks who think of stimming as negative/as purely a reaction seem likely to not realize the difference between happy stimming and not-happy stimming.)
• Oh hey recognition that we have body language and that some people (people who "get It" as a subset of this group) can read out body language. That's cool.
• Yay humor! (Make really really absolutely sure that the humor is considered respectful by the autistic person, not just by the family or the professionals we can't trust as far as we can throw them, k thanks.)
• Yay pointing out that strict behavior plans and therapy programs can cause harm by not reacting to the autistic person's reasons for acting.

I think I like this principal, who "understood that it wasn't going to help this particular boy for yet another adult to tell him that he was behaving poorly or that he needed to settle down." (142). Does that help anyone, really?

I also like pointing out that professionals can cause problems through stubbornness and inflexibility. (HEY autistic folks aren't the only ones who can be stubborn. Also, trying to out-stubborn an autistic person is probably not going to go well...)

The problems he points out as far as how people fail to "get It" are pretty good. I'd like to add that it's not just the parents hopes and dreams they are often insensitive to. However insensitive to those goals educators can be, they tend to recognize that those goals exist. The idea that we, the autistic students, could have our own goals that are not the same as those on the IEP or those of our parents seems not to register as even a possibility. Remember whose life this really is. I'm not living my mom's life or my dad's life or my teacher's life. I'm living mine, and at the end of the day it's my hopes and dreams that matter. Not my parents hopes and dreams for me. That is: remember our perspectives and shoes.

Continue to part 9 here.

Alyssa Reads Uniquely Human: Part 7

I'm still reading Uniquely Human. I am getting very tired of running into the Exact. Same. Problems. every chapter. Can I just at this point write, "Assume every description and anecdote is written in a behaviorizing way, or at best partially behaviorizing," have y'all take it as a given criticism, and write that fewer times already? Please? And since I've linked that same Disability in Kidlit article for the last several parts, can we take it as background material y'all reading this post have also read?

Anyways, the preceding part of my review is here, and the series begins here.

I take the usual issue with the anecdotes.

The comparison of learning social rules and learning to read body language to learning a second language in adulthood is actually quite apt. I've heard quite a few autistic adults compare body language to a foreign language, and not a particularly logical foreign language. (I think by logical vs. not logical in a language, the metric is how many exceptions there are to the "rules" of the language? English, for example, is not that logical because the exceptions have exceptions and we rifled through the pockets of other languages for spare grammar.)

Another side of the "foreign" language bit is that, well, autistic body language and neurotypical body language are different, even within the same macro culture. Neurotypical people usually can't read my body language very well, and often can't read it at all, because they aren't used to interpreting autistic body language through learning what things mean and tend to simulate what would it mean if they were using that body language. It doesn't work well, because they are very different from me. Autistic people tend to be better at reading me, and I'm better at reading other autistic people, but since most people are not autistic, it looks like the non-autistic folks can read (general) body language and autistic folks can't.

Dr. Prizant notes that one problem we run into is that we learn the rules and the exceptions, but it's another (and again unwritten ugh) rule that "generally people don't talk about the rules, they just follow them." (115). Which I'm going to point out is something in neuronormative culture that, yes, it's useful for us to know, but it's also something where changing that expectation is a required part of meeting us anywhere but the 97-3 split y'all like to pretend is halfway.  He doesn't point that out, by the way. I think he's still about helping us fit into a version of the mainstream where some people are a little more understanding while teaching us how to fit, rather than realizing that the mainstream is going to need to change big time.

Some more anecdotes follow with the usual problem. Blech.

One good point here: a problem with getting an assignment done could result from the assignment not making sense to the student. (Been there, done that, didn't get the T-shirt because the paperwork involved made no sense to me and no one believed me enough to help me with the paperwork...) Which is actually sufficient explanation on its own before shoving in the extra assumption that we don't realize it's a good idea to do class assignments and please the teacher. (Hint: I know full well that not doing an assignment is a bad idea. I'm still not going to push myself into a meltdown trying to do stuff I can't do, unless I know for a fact that letting the teacher see that result will get them to stop pushing me to try the thing I can't do. Self-preservation, not lack of social awareness. You can get a decent idea of my internal panic around the language utilization reports for my study abroad here, here, and here. The eventual resolution was "your residence adviser will help you" followed by "after her report from the attempt, we're not making you do those anymore." )

Also I feel like this tweet from real social skills is relevant here, since accessibility of assignments is getting discussed, even if it's not really getting framed that way:

Treating an accessibility problem as a behavior problem ends poorly whether or not you use punishment to address it.

— RealSocialSkills (@rsocialskills) June 10, 2016

Good idea pointing out that labeling pictures with emotions is different from understanding emotions or recognizing our own. (Did you know that we can't actually see our own faces to see if we look like w're smiling without the aid of a mirror?)

Soooo Lovaas got mentioned, but the apparently problem is that he insisted incorrectly that the ability to make eye contact when asked was needed in order to learn other skills. And that is a problem. But that as sole cited problem is really icky. (This is the guy who thought electric shocks were a good idea. This is the guy with the "you've got to build the person" idea. Very ew. Talking about him as an autism specialist and not as a horrible human being who didn't think we were human? Thanks, but no thanks.)

I have to wonder how much of what he's interpreting as not having the instinct to communicate what's bothering us is actually:

1. Compliance training having explicitly taught us not to communicate what is bothering us.
2. Difficulty initiating communication, which is right in DSM-IV and therefore shouldn't be a surprise to a clinician. 
3. #1 making #2 even more of a thing.

Continue to part 8 here.

Alyssa Reads Uniquely Human: Part 6

I continue to read Uniquely Human. I feel like I am repeating myself a lot as I do so. The prior installation in the series can be found here, and the start of the series is here.

Chapter 5 (parts and chapters are 1 off from each other because I did the front and back material first) is titled Emotional Memory. Heads up for discussions of PTSD and of flashbacks. Heads up also that he says this isn't the same as PTSD without really saying why he thinks it isn't.

When Dr. Prizant writes, "Julio suddenly found himself recalling his moments of panic and sharp pain, as if he were experiencing a flashback" (95) I have to wonder how much it's an "as if." A lot of autistic people have PTSD. A lot of autistic people have flashbacks. Some of us have fully immersive memories even when the memory isn't necessarily traumatic (not me, no minds eye over here.) To be clear, I'm not saying Dr. Prizant is wrong to notice the strength of memories. I'm saying that our memories can be even stronger than he's writing.

These memories have effects. I think that the descriptions in "How memories explain behavior" are useful, though there's always that behaviorizing thing. Explanations are given, but it's external detective reasons (he talks explicitly about using detective work to find the explanations) rather than internal motivations, and there's generally an assumption that overcoming whatever the traumatic memory was is a goal. (I think it often is, but sometimes the actual solution is avoid the trigger.)

I like how he discusses that "Anything can be a trigger."
I am very confused by how he thinks "Good job!" and similar praise would be a surprising trigger for anyone who's ever dealt with an ABA or discrete trial type therapist. That's something most anyone who really listens to autistic adults would know. (Unless he's giving it as an example that parents or educators might find surprising? He seemed personally confused as well, though.)

He then turns to PTSD. He says there are differences between what these students are experiencing and PTSD (sometimes I guess) but that there is also overlap (like a lot of autistic adults actually having PTSD!) I guess the "rarely prove as debilitating or intrusive as PTSD can be"(102) leaves space for emotional memory stuff to sometimes be as bad as PTSD, but no mention of the fact that some of us literally actually have PTSD.  Which would totally explain why PTSD research is useful for understanding our issues.

Oh hey a mention of avoiding the triggers as a strategy.

Looking at Amy's story, I don't get how the option of going to the theme park without going on rides isn't forcing her to go? It's still making her go to the theme park even if it's not making her go on the rides...

The idea of explaining exactly what is going on and what will happen so that we know what's coming is a good one.

Not calling things "work" -- I get the logic there, but there are also problems! There is, in fact, a difference between work and play, and a difference between free play and therapy. Not giving someone the words to communicate those differences isn't a good strategy for getting them to accept the one of the two that they dislike. (It's going to contaminate the one they like.)

Making a life that has positive memories in it is also a good idea. (No, really, he suggests this in the closing for the chapter.) It's important to keep in mind what we're going to find positive and fun because it's often not what parents and professionals would expect.

You can find part 7 here.

Alyssa Reads Uniquely Human: Part 5

I'm reading Uniquely Human. The start of the series is here, and the previous part here. I've been loving the comments so far -- very informative! Please keep telling me things :D

Somehow the description of Derek's internalizing Dr. Prizant's pattern/rhythym of September visits rather than October ones is reminding me of the description of David's rules in, well, Rules: Derek has an idea of how the world should work and that's a rule, but we don't get to see why it's a rule. It's just a rule. (And David's Rules were given as an example of behaviorizing depictions in that Disability in Kidlit article y'all should really read. Just pointing that out.)

I raise my eyebrow at the idea that autism is a disability of trust. I raise that eyebrow very high, figuratively. Literally I don't raise it much because my eyebrows remain on my face and my forehead isn't that big.

The idea that we can't always trust our bodies I buy -- I can trust that if my body is giving me information, then the information is good, but there's a lot of information I don't consistently get. Am I hungry? Cold? Tired? I don't know. I've broken bones and not known it. This isn't quite the same as the mistrust that Dr. Prizant is describing: he's describing not understanding what minor illnesses like colds are (could it be that no one bothered to explain to us that these things exist and are minor and will pass? Also, look back at the echolalia chapter for the "Do-ahhh" example, kid knew full well what was wrong even if he couldn't say it in the standard words.)

I think "routine changes and unexpected things are hard" is getting framed as being about trust in the world, which, I can kind of get, but I don't fully agree with. A lot of autistic people have funky circadian rhythms, and I know the way mine is funky is that it is tied very firmly to the sun. That is, I don't actually care what the clock is doing for the purpose of determining when I am alert vs sleepy and when I get hungry. I care what the sun is doing. My troubles (or lack thereof this year, when I was able to shift most of my schedule a clock hour when DST started) with daylight savings aren't about trusting when things happen. They're about "uh I don't care what the clock says, I wake up when the sun rises and then I want food" and similar mismatches caused by following the sun.

Similarly, while trust lost in the world could work, approximately, for the other example given, it's not the only explanation possible and just saying "trust in the world" isn't satisfying. Plus the descriptions, even with some level of "trust in the world" explanation given, are at best mostly behaviorizing with a touch of humanizing in there.

Oh god I think the trust in others part is going the Theory of Mind route, though without using those words. Apparently most people are hardwired to be able to predict the behavior of others and read body language and such. Which others? Others like themselves. Most people can't read my body language for beans. If this isn't Theory of Mind itself, it's got the same rhetorical issue: theory of whose mind?

The constant vigilance related to this trouble predicting people (who are often terrible to us!) is dead-on, though. Oh, my goodness, are people exhausting to deal with, because they're unpredictable and don't think they are.

Fear and anxiety are definitely also things. (Holy wow do I have anxiety. A lot of folks think I don't get scared easily because they don't recognize my body language well enough to tell when I'm scared and because I don't make that much effort to avoid the things that scare me (too many things!) plus I definitely have Gryffindor tendencies anyways. They're wrong. Sensory issues, people having actually been terrible (still no mention of how much more frequently we are victims of abuse by parents or teachers, which would totally cause disregulation and fear) , unpredictable animals, and more.

I like how Dr. Prizant mentioned that things other people might like could be scary for autistic people. I also like that he realized (at least in the case described) that forcing a student to participate in the scary thing would be a bad idea, and said so (plus why!)

I like how he points out that when we try to control situations, there are actual good reasons we might try to do so! Pointing out that professionals often try to seize control is also handy, but can we talk a little bit more about how much of autism therapy is about the therapist being rigid and controlling? Because is it ever!

I know "selective mutism" (or apparently "elective mutism") is the term used, but ugh. As someone who loses speech, and not just from anxiety, I really, really hate descriptors that imply I am choosing to have speech go kaput on me. (Also the kid may well have been situationally not capable of speech in addition to sometimes choosing not to speak. This is a thing that happens.)

The bit on how children exert control is definitely behaviorizing in the depictions. Since the birthday party is for Jose, not sure why the parents and therapists are so stubborn and rigid in their insistence that it be planned their way, as in, expanded beyond the group Jose originally said he wanted to invite :p.

By persistently giving the message "You must change," we are inadvertently communicating "You're not getting it right. You're screwing up." (90).

Inadvertently? Inadvertently?!  Folks, if y'all can't figure out that telling us constantly to change everything about ourselves is telling us not just that we aren't "getting it right" but that we are inherently wrong, then we are not the ones lacking in empathy here unholy pancakes what even is this. You don't get to do this stuff and then claim it was an accident. (Plus I remember Lovaas, there's the pieces but the therapist needs to build the person?)

The advice for building trust seems OK on the surface though I don't pretend to trust the ways it'll be interpreted and used by parents and educators. The celebrated "successes" will likely be times where an autistic person acted in neurotypically expected ways. (As a contrast, and illustrate to what else success could mean, one of my big goals this year was switching over to writing or typing as soon as doing so would be more efficient than speaking, rather than waiting until speech was entirely gone.) The choices offered are likely to be superficial things like which sandwich we want or which approved activity we want rather than the choice to not participate in any of the social options or generally to reject all the suggestions and come up with something entirely different. ("When do you want to practice eye contact?" Um, literally never, thanks.) Which isn't a problem with the advice, but it is a problem that I want to warn parents and educators about.

You can find part 6 here.

Alyssa Reads Uniquely Human: Part 4

The saga continues! Part 3 is here, and if you want to go back to the beginning, that's here.

Chapter 3 is titled "Enthusiasms."

I feel a bit odd about the listing of "special" interests, here called enthusiasms, though it's mentioned that many call them "obsessions." (I tend to call my own "Autistic obsessions" but I'm the kind of twit who throws themself into a wall hard enough to shake the stage to protest the idea that indistinguishability/loss of diagnosis is an optimal outcome so take that with a grain of salt.) I've never felt weird about autistic people listing the interests themselves, which is fairly common: there's an entire Tumblr blog dedicated to sharing our interests! I think part of the difference is that when we do it, we get to explain how the interest makes us feel and why we have it and how we expressed it, and here it's just a list. Like in David's article for Knots. (You need to make an account to read the article online, but it is free.) I think that extra detail makes the difference for me between behaviorizing and humanizing when we describe the interest.

I like how Dr. Prizant points out that our interests are a source of, well, interest, plus happiness, and that this is on its own an argument against discouraging them. Yes thank you we have internal thoughts and feelings and what makes us happy matters on its own merit. Glad you pointed that out.

I also like the example of how a teacher was able to use a students enthusiasm in order to design an alternate assignment involving reading and writing that he completed happily because it fit the interest. I like how he points out that most people have interests and hobbies (and admits that we tend to get more intense in ours, because we do, but it's not the act of having an interest that's autism-specific.)

There's definitely a problem with the idea of "splinter skills" or "savant skills" though, in dividing us up into the parts you find competent or valuable and the parts you find worthless, and frankly a problem of applying improper standards when you think the neuronormative "overall profile" or "developmental level" is going to be a useful measure for us to have abilities or support needs that stand out from a "profile" we didn't really fit anyways. I say this as someone who hasn't had a single coherent developmental level (as defined neurotypically) since I was about five months old. Possibly longer. Doesn't mean I'm a savant or have splinter skills. It means autistic development is what happens here, rather than accelerated or delayed neurotypical development.

The "Remarkable" tales of passion are stories with happy endings that come from having encouraged, supported, accepted, and sometimes taken advantage of our interests, which is cool. The accounts definitely lean behaviorizing rather than humanizing (if you haven't read the behaviorizing and humanizing link yet, it's to Disability in Kidlit and the idea applies just as well to describing real autistic people as it does to describing autistic characters.)

The use of an interest, bringing supplies to education meetings so the student can engage with the meeting when they want and engage with their interest when they'd rather do that, is a good idea, and since involving students in their own education is important, I really like that idea.

He does address times when an interest can get us into trouble -- the key is when pursuing an interest could violate someone else's boundaries/consent, we don't get to do that. (He doesn't put it in those words, but it is the common thread between the examples given.) Which is legitimate.

Teaching time and place can be useful, but I'd like to add one more piece: supporting us in our choice, if we make it, to spend most of our time in the places where our special interests are accepted and are how we connect with people anyways. In autistic spaces, taking turns sharing lots of information about our interests is considered social engagement. (The taking turns so that we all get to do it is part of what's great about it.) Plus we can find folks with the same interest. The other thing is that many interests will have clubs or interest groups: heck yes we may want to join those! Arranging to spend more of our time in the places where we already fit is very much a thing.

In the section on teaching time and place, Dr. Prizant notes that a common problem in people's responses to our interests (and how we express them, which absolutely can be in infodumps) is focusing on behavior to the exclusion of motivation. Yeah, that's an easy mistake to make when all you describe is the behavior, even when it's behavior that you think is OK, isn't it? (Yes I'm pointing out that you are narrating behavior over motivation in your book, Dr. Prizant. Please follow your own logic and suggestions better.)

The idea of using interests to support engagement in school I think is useful. I'm a bit wary of thinking a career might come out of these interests, for reasons Dani's expressed well. Turning an interest into work can burn the interest out, and besides, some things just need to be for fun. That doesn't mean it can never work -- he gives some examples where building an interest into a career seems to have gone fine, at least from the outsider perspective, but keep the caveats in mind before suggesting someone else do it.

You can read part 5 here.