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.

That AAC on a plane story

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

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

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

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

Problem the first:

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

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

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

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

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

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

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

And you know what else concerns me?

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

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

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

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

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

"But that won't fly in [high school/college/the working world/etc...]!"

When people have somewhat unusual methods of ... doing anything, really, there are often authority figures who will try to stop it with the excuse that it won't fly in some other context, so it needs to be stopped in this one, too.

It's bullshit.

First, different contexts are different. A K-12 classroom is not a university classroom is not a construction site is not a factory floor is not an online chatroom is not a floor full of cubicles is not a ballroom. Just because I shouldn't waltz on a construction site, that doesn't mean you should tell me not to waltz in a ballroom because it wouldn't fly on a construction site. Just because some people will (incorrectly) assume my iso headphones (noise reduction, but not cancelling or music) mean I'm not paying attention, that doesn't mean I shouldn't wear them on a factory floor or at a construction site. It doesn't actually mean I should skip them at school or in an office, either. It's an assistive tool for sensory processing issues, and willful continued misinterpretations once I explain that to you once are not my problem.

Second, the context you cite may well consider the unusual method a non-issue. Some people like to tell me that being nonbinary might sound cool on the internet, but at work no one would tolerate that. They're just wrong. I use "they/them" pronouns and either "Mx." or no honorific at all as a teacher. I do the same as a graduate student. I get asked about it on occasion, but it's a non-issue. Your statement that it won't fly in [insert other context here] may well just be wrong. Others would like to tell me that sitting on the floor or under tables won't be tolerated later, so kids with disabilities need to be table-ready as a first priority, ahead of things like getting communication supports. I sit under an actual literal table when I have to go into the lab in graduate school. No one cares.

Third, even if the people in this other context have an issue, have you considered the possibility that they're wrong to do so? The administrators at a university where I studied abroad were of the opinion that I shouldn't come, because "people like that shouldn't be in college." (People like that meant autistic people, in this case.) I feel OK assuming just about any specific autistic trait they took issue with was a cover for them not wanting autistic students at all. Or a rock climbing instructor takes an issue with flapping (without letting go of the person on the wall!) and being left-handed. They're just wrong. Why are you backing up their wrong-ness?

Different environments have different expectations for actual reasons, they might not have the expectations you'd think they have, and other people are just as capable of having bullshit expectations as we are. "That wouldn't fly at work, so I'm not letting it fly in my classroom" is not a good argument. 

What if they're stimming with the device?

In response to the fact that it is not OK to take someone's communication device away, ever, apparently it is common to ask, what if the person is stimming and (we assume) that's interfering with communication.

There are a few points I want to make in response to that. Some I've seen elsewhere. Some, less so.

• What would you do if a kid was vocally stimming, with their natural voice, and you thought that was impeding their communication? Still not taking away their voice, right? Even if you think they're doing something noncommunicative with their voice, you're still taking their voice in that example. Never means never. (This is mentioned in the PrAACtical AAC post, but it was also my immediate gut reaction.)
  
• Or what would you do if you heard me stimming with my AAC device? Cause yeah, I'm an adult and you know I can communicate and all, but I do that sometimes. Would you consider taking my device? I'm kind of assuming it's a no there because the idea that you might try is a bit too scary for me to look at right now, but why wouldn't you do that to me, if you would to them? (This is somewhat an explanation to my immediate gut reaction.)
  
• Keep in mind that communicative echolalia is a thing. In my experience ... yeah, sometimes repeating words or sounds because it feels good is a thing but there's often a meaning. (pickles pickles pickles pickles pickles resulted in my getting pickles, in college. It was also stimmy, as a side bonus.) For those looking for citations on the communicative functions of echolalia, Barry Prizant did some work on that (Prizant & Duchan, 1981; Prizant & Rydell, 1984). I don't trust him on the whole, remember my reactions to Uniquely Human, but communicative functions of echolalia is a useful thing he did.
  
• Echolalia, repeating words and phrases is also how a lot of autistic people learn language in the first place. The thing that is how we learn language is not actually a barrier to communication and if this is what's going on, your assumption that this is a barrier to communication is just wrong. Do not pass Go. Do not collect $200.
  
• Also, is the babbling stage a thing with AAC use? Cause it usually is with oral speech and it's not successful communication yet but it has to happen in order to get to successful communication later. Exploring language and using it in unexpected ways is part of learning language. (This shows up in the PrAACtical AAC post.)
  
• Stimming is great. I am usually stimming in some way. It's not usually vocal because that's just not what tends to work for me, but I am usually stimming. Hence, fidget spinners and blanket pieces. The fact that a person is, in fact, stimming does not mean you should stop them from doing whatever it is they're doing to stim. Suggesting alternative ways of stimming can be OK under some circumstances, but seriously, "they're stimming" doesn't mean "they should stop." Similarly, "it's echolalia" doesn't mean "they should stop."

Academicy Citations

Prizant, B. M., & Duchan, J. F. (1981). The functions of immediate echolalia in autistic children. Journal of speech and hearing disorders, 46(3), 241-249.
Prizant, B. M., & Rydell, P. J. (1984). Analysis of functions of delayed echolalia in autistic children. Journal of speech and hearing research, 27(2), 183-192.

Self-regulation, AAC access, and arguments that should not need to be

One of the big things with augmentative and alternative communication devices is that you're not supposed to take the device away from the person who uses it. The idea that you don't do that came up in the AAC class I'm taking this semester. The reason that came up is a bit different from the visceral, that's how I talk wtf reaction I have as a part time AAC user, but it came up.

The video was, "AAC in the Classroom for Students with Significant Disabilities: A Progression Strategy From BIGmack to SoundingBoard and Beyond!" It can be found on AbleNet under Ablenet university webinars, registration required but free. This quote led me to respond.

“The only time they get a voice is when you give it to them. You need to leave the device with them so they start learning self-control.”

I suppose a student could have a self-control issue? Here's the thing: you have no way of knowing if that's an issue, if taking away the device has been a thing, because a person's natural self-regulation doesn't apply so well in scarcity, even if they already have the ability to regulate themselves. It's not just about regulating myself -- it's also about not knowing if the thing will remain available. If I think someone else might finish the chocolate cake before I get any, I'm going to go for it when I'm not quite as hungry (and haven't had quite as much of the healthier options) than when I know it'll still be there if I wait. The same principle applies with talking: say everything you can, while you know you can.

Scarcity over time absolutely can mess up any self-regulation that's been learned, too. Even if teaching self-control is a concern here, it's not always so much, "leave the device with them so they learn self-control." Sometimes it's, "leave the device with them so you don't destroy whatever self-control they have."

That's all besides my main issue: I've never heard anyone use the need for a speaking person to learn self-control as the reason they don't tape this person's mouth shut. Most people seem to get that taping someone's mouth shut is not OK. (Most, not all. In the context of really nasty abuse, it happens, and be warned if you decide to look at the details.) Most people don't need a self-control argument in order to understand that taping someone's mouth shut is unacceptable.

An argument about the need to teach self-control shouldn't be needed here, either. If we have to consider teaching self-regulation (a useful skill, to be sure!) as an argument for why we shouldn't be taking away a person's communication access, things have already gone badly wrong.

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. 

What do you mean by severity?

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

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

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

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

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

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



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

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

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




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

Please, autism researchers, study these.

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

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

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

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

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

Divergent, Gattaca, and limitations "for your own good"

Last night I participated in the #FilmDis chat about human gene editing and GATTACA. Which, even though it's been a while since I saw the film (I think the last time was in 2010), I have opinions about. It's a film about eugenics, and in a very real sense it's about eliminating disability in most people but creating a new genetically inferior (disabled) underclass that looks a lot like the old one, people who couldn't afford to have their kids genetically selected birth this underclass. So do people who leave their children's genes up to luck. (AKA, the protagonists parents, at least the first time.) But the only person we see in the movie (which is largely about disability discrimination) who we'd discriminate against today? He's got an acquired disability. It's not genetic. And he's the one who's genetically valid, selling his genetic identity and thereby allowing the protagonist to get in the door to his dream job.

And Divergent is a series I have opinions about. I loved what looked like neurodivergent representation in the first two books, except for the part where I knew what was coming: the Divergent are secretly neurotypical and everyone who really fits a faction has "genetic damage" making them neurodivergent. And sure, we build a city in the end where no one really believes in genetic purity vs. genetic damage, but all through the series we're shown the functional superiority of Divergent people: Tris, do your Divergent magic, think like the Erudite and tell us what they'll do! Tris, come in first in initiation and have it clearly be about your Divergence. Or ... your neurotypicality.

So it's probably not shocking that I want to connect them? They've both got genetic engineering and discrimination based on genetic makeup. And I do:

A6 I want to link #GATTACA and #Divergent here. But I usually go to sleep over an hour ago so it's not working well. #filmdis

— Alyssa (@yes_thattoo) February 19, 2017

A6: I think it's both films limiting people based on perceived genetic defect in the name of wanting the best? #filmdis

— Alyssa (@yes_thattoo) February 19, 2017

You see, the entire idea of factions in Divergent is about behaviorally conditioning people to behave in ways that takes their presumed "damage" to an extreme, in a way that's hopefully useful. This ... actually reminds me of Specialisterne? More on that later, maybe. They think it's the kindest thing to do, giving people a way to be useful while using their supposed strengths (that are secretly still defects.) It's still limiting people based on an idea of what their potential is, for what is supposed to be their own good.

And several times in Gattaca, we see Anton attempt to dissuade Vincent from his goals, in the name of "protecting" his "invalid" older brother. He should take the jobs that "invalids" can get, not try to go to space as he's always wanted. He should leave the company he works for. He should accept that his genetics really do make him inferior and work from there, for his own good (for his own safety.) And maybe it would be safer. (Isn't it usually safer, at least in some ways, to stick to the paths laid out for you as acceptable?) But this sort of limiting people for their own "good" and to keep them "safe" exists in the real world, for disabled people. And guess what? It's not actually safe!

So in both Divergent and Gattaca, we have people limiting others (or trying to) in the name of their own good. Adults who only want the best for us, hurting us because of what they do not know. (My fear is not of water, and now I remember Vincent and Anton competing in the water. He didn't save anything to get back.)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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The absent minded professor

It wasn't exactly a secret to me that some professors are autistic. First off ... professors are a subset of humans, and therefore I would expect to meet some autistic professors. Then there's the bit where a really focused interest (in an area you can get a doctorate in) might come in handy for getting a PhD. Plus I'm pretty good at recognizing other autistic adults when I meet them, though they don't always know themselves.

It's even less of a secret (by which I mean it'd be pretty easy to deduce if you think about it, plus you could find out by listening to us) that academia is frequently inaccessible for autistic people. Department politics? UH-OH. Bureaucracy? UH-OH. Networking, and getting jobs in ways that may or may not have much to do with the "official" channels? UH-OH.



And yet.
Hans Asperger described some of us as "little professors." Why did he think we were like professors? Or, perhaps more to my point, why did he think professors were like us?

Neurodiversity in the academy.
We've been there all along. Or, some of us have.

Can you speak, at length, on your topic of interest?
Can you speak at all?
We might have use for you.

Do you look like the person we expect at university?
Enough that we'll deal with the bureaucracy for you?
We might have use for you.

Can you maintain the schedule we expect?
Even the graduate school version? And the adjunct version?
We might have use for you.

But that's not really neurodiversity, is it?
It's just moving the line.

The absent-minded professor may well be autistic. I've met a few who are.
But without solidarity from the ones who were always given a space, this supposed representation is nothing but Aspie elitism.
(I don't pretend that Aspie is a useful category, but elitism based around the idea that it is? For people presumed to fit there? Now, that is very real.)

Remember that the absent-minded professor we are shown is always a man, always white, usually at least middle aged.
The only allusion we get to autism as disability, and not purely (or even primarily) social, is that his wife might take care of him when he forgets to eat. Or he just doesn't take good care of himself.
Sensory processing issues? Who knows.
Executive functioning? I think that's why his wife is feeding him. Or maybe it explains the Rube Goldberg machine that makes a mess of the food but does provide something vaguely edible. Usually.
But it's always a him, and it's always his wife.

What about the autistic people who aren't a "him?"
Women. Nonbinary people.
What about the autistic people who don't have wives?
Who takes care of us, if it turns out that our living alone wasn't such a great idea after all?
Or do we just not get to be academics?

So here's to the ones who were never supposed to make it through.
Here's to the ones who didn't, because they weren't mean to.
The university might be a haven for some of us,
But without solidarity from those who were permitted
For those who never passed for consistently verbal white men who live on their own or found a woman to pick up the slack
Or even for the "close enough" of one difference away,
It's only ever another aspie elitist wrong planet to build a home on.





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#Pokémon Go and #Autism

Like most games that get super popular, Pokémon Go has a lot of autistic people interested and playing. We play games, you know. And enjoy having fun.

Like most activities that have autistic participants, Pokémon is getting attention from autism "experts" and professionals. They want to know why we play (uh, it's fun... why do neurotypical people play?) They want to know what it "helps with", since apparently everything autistic people do (everything we're allowed to do by our all-knowing and compassionate caretakers?) must "help with" (reduce) some aspect of our autism.

I am, of course, less than thrilled about the assumptions involved here. There are plenty of things I do for reasons that differ from why neurotypical people do them, but that's not so much in the area of games. It's more in the area of "I said words because I meant those words, but apparently neurotypical people say those words as code for something else and what do I do if what I actually mean is those words, why do you neurotypical folk need to ruin useful statements with your codes???"

So, why do I play Pokémon Go?

Well, it's fun.

Also, it gets neurotypical people socializing in more autistic ways, which makes it a heck of a lot easier for me to understand them and interact with them. Let's turn the usual social skills paradigm where we assume it's the autistic person socializing "wrong" on its head and make a super popular game that encourages people to socialize autistically, thanks.

Here's what I mean when I say that it encourages autistic socialization:

1. This isn't random small talk. "Hi, there's an Eevee over here!" makes a perfectly acceptable introduction to a fellow Pokémon Go player. Or when you meet one at a gym, "What team?" Straight to the point.
1. It's centered around a single shared interest. That interest is Pokémon (Go).
   
2. Eye contact is not an expected thing on any side. This is centered around a game played on our phones or tablets, so it's completely expected and accepted that we are looking at our phones or tablets, not at the people we're talking too. Great!
   
3. Pokémon was created by an autistic guy. He likes bugs. Why did you think "bug" was a type in Pokémon?

So let's turn that question around: Why do neurotypical people play Pokémon Go? What does it help them with? I welcome input from parents, professionals, and of course, those with neurotypicality themselves. But only when they are self-narrating zoo exhibits. I don't really think those with neurotypicality can speak to the general neurotypical experience :p

(And yes, that's what you sound like when you add a note about autistic contributors at the end of your calls for contributions.)

Dear Neurotypicals: What if you use your words?

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

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

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

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

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

Alyssa Reads Uniquely Human: 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 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.