"Speaking" to academia #ASDay

I wear many metaphorical hats. I'm a teacher. I'm a published poet. I'm a disability studies scholar, affiliated with a university but not for disability studies. I'm a graduate student in neuroscience. I'm an Autistic advocate, and not only a self-advocate (advocating for myself is often harder than the general stuff.) I'm a blogger.

Always, I am all of these things (and a bunch of other things). Sometimes, I get the opportunity to combine them. I've been blogging for GradHacker, part of Inside Higher Ed, since the start of the calendar year. That's for writing that's relevant to graduate students, or about graduate school.

Even though I know disabled graduate students exist, and disabled professors exist, and anyone teaching will eventually have disabled students, I've worried before every disability-related pitch I've made to them. Is it a topic that anyone outside disability communities would care about? Do they have enough background to understand the issue even if they care? Will the editors go for it, even if the audience would find the post useful?

It's far easier to talk about something like my discussions with my union, where my example "just happens" to be about disability. I know graduate assistants unions and contracts are widely relevant. I know "read your contract!" is good advice for any graduate assistant. One of the reasons I give is about knowing where I go for my accommodations, but it's not the only one I give. There were all of three disability posts on GradHacker before I started blogging for them, so far as I can tell. Breaking that pattern was a bit nerve-wracking. (Three of the posts I have up for them are explicitly about disability, and all but one at least references it. Seems like a lot, but I said I could bring a disability perspective when I applied and they took me so they kind of asked for it? That's what I tell myself, anyways.)

The disability series I'm writing for GradHacker now didn't start out as a series at all. It started with a post I'd had the idea for, and then suddenly couldn't not write. That's how a lot of my writing happens, actually. The disability stories I'd heard over the course of my time at university, either from professors or from other students, scare me. A way of explaining the pattern came to me, and I had a post. I was about to post it here, and then I realized that the GradHacker audience was the one that really needed to see it. They're reasonably likely to be teaching college later, and they might be doing so now! That became of the most commented-on pieces on GradHacker, because I "spoke" up. (Maybe the most commented on. Definitely the most commented on since I started blogging for GradHacker, almost by a factor of three.)

Now it's going to be at least four posts: one about disability stories, one about using AAC as a student, an upcoming one about the accommodation talk as a student (written, but not scheduled to post until late this month), and one an editor suggested to me about disclosure as a disabled teacher.

I'm talking to academia, or the future of academia, about things that directly affect me as an Autistic graduate student. Some people might even be listening. I hope so.

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

So here's the video:

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

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

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

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

HI backup systems are important, variety

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

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

NO PREREQUISITES

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

HAHAHAHA HIIIIIIII (It's meeeeeee)

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

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

NO HIERARCHY OF DEVICES OR SKILLS

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

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

Least dangerous assumption.

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

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

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

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

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

Diagnostic arbitrariness and NO, not everyone is "somewhere on the spectrum"

["Somewhere on the spectrum" here is "somewhere on the autism spectrum," or variants on the theme of claiming everyone to be a little bit autistic.]

Autism diagnosis can be pretty arbitrary. There isn't a blood test. There are genes that are associated with an increased probability of being autistic, but that's not the same thing as a gene "for autism" or a genetic test. We don't really ask about the internal experience of being autistic, either. Instead, we basically have a behavioral diagnosis: if you do X, Q, and W, but not A or B, then we're going to conclude that autism is the proper label. C makes us wonder if you might really have some other thing, but we won't rule out autism if you don't meet the rest of the criteria for that other thing. (Or, we shouldn't.)

Since autistic behavior is a subset of normal human behavior, this gets messy. Autistic people might tend to stim in characteristic ways, but everybody stims, and sometimes we're just getting in extra trouble for a way of stimming that is actually pretty common. Think about fiddling with a pen or pencil as an example of us getting in extra trouble for something most people will sometimes do.

That means edge problems. Where, exactly, are we putting the line between two neurotypes? The location of the line changes when we change the diagnostic criteria - that's always a big topic of discussion around DSM changes. Telling people who seem to be near an edge that they are definitely on one side or the other of that edge, based purely on external behavior, will lead to mistakes. Some of these mistakes will be harmful.

Any categorization scheme dealing with people has to deal with the reality that no two people are exactly alike. Not every single person is easy to classify. Our nervous systems didn't read the textbooks while wiring themselves! There are people who fit equally well (or equally poorly) in several categories. The problem there is with the textbooks, and the inevitable incompleteness of categorization systems. MASSIVE harm is done when people treat the problem of not fitting the classification system as being with us instead.


Oh, and let's not pretend that everyone diagnosing autism (or any other neurotype) actually understands the neurotypes they're diagnosing. Plus there's problems from people taking advantage of their positions of power, or otherwise acting in bad faith. Sometimes, things are intentionally done wrong.

Now, all of these issues are real. I've seen people use some combination of these issues to argue that everyone is somewhere on the spectrum, and that's where the problem is. "Some people are hard to classify" doesn't mean "everyone is hard to classify" or "everyone is somewhere on the spectrum for neurotype Y." On a similar note, "The person who diagnosed me incorrectly with X didn't understand X or my actual neurotype of Y" is different from "X doesn't really exist" or "Everyone is really Y." In each of those cases, the first statement is true. The second and third statements are not, and actually look a lot like diagnostic arbitrariness themselves. (They can certainly hurt people in similar ways to diagnostic arbitrariness around the edges of definitions.)

"Screen time" and some more patterns

Yet another article about screen time is going around. I swear, those things are everywhere. This time it's Temple Grandin (who gets touted as being an autism expert in general when she's actually an expert in livestock, like cows*) talking about limiting screen time for autistic kids. She's actually more nuanced about it than most - the headline says screen time, and she says it once too, but she does specify what "kind" of screen time she means. Most people don't.

So, here's a bunch of things that get lumped under screen time:


1) I have an ereader. I am reading a book (or a paper related to my graduate studies). On a screen!

2) I'm watching a movie. On a screen!

3) I'm playing Pokemon Go, which involves a lot of walking around, but also it's a cell phone game. On a screen!

4) I'm playing a computer game. On a screen!

5) I currently can't talk, so I'm using FlipWriter on my iPad to communicate with my classmates. On a screen!




6) I'm teaching math. It's an online class, which is great because my ability or inability to speak at the time is irrelevant. My "accommodation" of getting to write or type instead of talking, when needed, is already built in to the system. Still. Where am I doing this? On a screen!

7) I'm using the Internet to talk to a friend who lives across the country. On a screen!



Which of these am I supposed to be limiting? Why are we using one category for all of them, if the answer isn't all of them?

Or, which of these will you admit to having a problem with, versus which ones would you actually like to get rid of? Because I think that's part of the why. If you build a category full of things that you don't like, including some things that it's considered OK to take issue with (video games!), you can get away with talking about the whole category as a problem. Build up the apparent size of the "problem" by including numbers from the parts you need to at least pretend are OK (maybe AAC? maybe online classes?), talk about supposed bad effects from one item in the set (video games?) as if they came from the entire set, and then there's clearly a big problem. Ban or limit the whole category.

I'm thinking back to the pattern I talked about with fidget spinners, or a variation on it: 

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.
Instead of being banned because it's distracting to others, it's apparently distracting to us? In any case, the thing is banned or limited "for our own good."

Then what happens?

Whoops, no ereader for you unless you can prove you need it for a disability reason and are willing to out yourself. Spend the money and the space on those paper books! Who cares that they're harder to hold up, or that the electronic version is searchable?

Whoops, no more movies! (You know, storytelling? Acting? It's on a screen, though, so we can't have that.)

Whoops, no more games on a screen! Never mind that some of them involve walking and most of them involve problem solving and that fun matters on its own.

Whoops, no AAC for you unless you have formal documentation of the fact that you need it and are willing to out yourself. Better go back to being silent in class, or maybe not going to school at all! It's distracting to have you here, after all. Or you could try this low-tech system? (Which, to be fair, is most of what I use. Doesn't mean it's OK to make me stick to the low-tech options in the situations where my high-tech, screen dependent options are better.)

Whoops, no more online classes. (Temple actually made this one an explicit exception, so, again, tiny bit of kudos for the nuance, but don't say screen time unless you actually mean screen time because words have meanings.) 

Whoops, no more friends who live far away! Pay attention to the jerk in front of you who thinks screens are the devil.

You only had to admit to taking issues with the video games, but now all this is gone, because you could point to something that many people will take an issue with and generalize it beyond any semblance of accuracy.


*I'm sure she's an expert in what works for her. She basically got pushed to "pass" for neurotypical, which is still what mainstream experts tend to think of as being the "optimal outcome" for autism but is often a recipe for burnout. Now she recommends stuff that makes it sound like she agrees that's the best thing. She also led to the popularization of the idea that "autistic people think in pictures." As an autistic aphantasiac (no minds eye), I'm well aware that's not consistently the case. So, no, I'm not a fan of Grandin.

It's kinda funny

So, a few weeks ago I met with two folks from a company that's making a computer game or a video game related to autism and social skills. I agreed to meet with them for a couple reasons:

• The one I'd met before, I met at a hack-a-thon like event (un-hack-a-thon?) that was autism focused and had many autistic participants, mostly teenagers, and which used Nick Walker's description of autism as a starting point. Starting from a neurodiversity paradigm description of autism is nice, and not something I see much of for technology and autism stuff.
  
• The one I'd met also liked the "Autistic Party Giraffe" shirt I was wearing. I find that people's opinions on that shirt are somewhat useful information: folks who comment on liking it are generally able to handle the idea that Autistic identity is a thing without too much worldview conflict.
  
• They clearly didn't quite know what "supporting autistic people in finding social methods that work for us" would really mean, but the couple ideas I'd thrown out at Chatter went over well. Things like, if we can get more done by not trying to pass for neurotypical, why the heck is passing for neurotypical considered an optimal outcome? (See Dani's "On Functioning and 'Functioning'," yet again.) 

So, I did the thing. It was exhausting. We met at a coffee place between my campus and the train station on a Friday morning, and we talked for about two hours. They said at the time that what I was saying made sense, and that it changed their perspectives, and now they needed to figure out how to navigate the tangled mess of doing something actually helpful with their game while also getting the needed funding to make the darn game.

One incident that sticks out for me was the demo video of the game. They brought a laptop, and there was a minute or two of gameplay video that I watched. When it first started, there was a big face and eyes right at me. I flinched. Unexpected face in my face! Then there were points where a player was supposed to recognize the emotion that this being was expressing. The emotions were clearly overacted, both in terms of facial expressions and tone of voice. This was supposed to be some sort of "easy" mode, I guess? Whatever. I could tell it was overacted. That didn't mean I could always tell what emotion was being overacted. (Yeah, I got some "wrong.") 

Judging by their reactions to my reactions (how meta theory of mind can we go here?), it seems I served as an object lesson there:

• Identifying that an emotion is being expressed is not the same as identifying what that emotion is.
  
• Managing OK in real-life social situations is apparently not the same as recognizing overacted emotions in artificial settings.
  
• Some autistic people will absolutely flinch from unexpected eye contact. Ow.

It's a thing that happened. I was super tired after.