One Last Autistics Speaking Day

I actually don't remember the start of Autistics Speaking Day (I'd just started my freshman year of college), but I've read about it. 

I've participated a few times.

I helped with the Tumblr for it, I think 2014-2016? 

But as time moves on, the ways people engage in communities have changed. Yahoo groups were before my time. I began engaging in the age of blogs. I saw #AutChat start. I think we're in the age of social media, now, more so than stand-alone blogs.

I'm not sure that's a good thing, but I think it's true. Facebook groups are where I'm most active, now. 

I'm still speaking. Just... not usually orally, and not usually here. 

(It's also relevant that I've been writing in places that aren't blogs or social media, but that's more the academic side of things than the everyday.)

The Intersectional Infinity Summit

Today, I presented at the Intersectional Infinity Summit. Twice, actually. 

First, I talked about "Exploring AAC as a Student & Educator--Communication Access & Accommodation." Then, I was on the panel, Why Autistic Acceptance is Essential. Spoken language was working for me at the first presentation, but not at the panel, which I think is kind of funny because it meant I used AAC for the presentation that wasn't about AAC. 

Because I used AAC for the panel, I have a record of everything I said during it. That's below, but slightly out of context: 

My name is Alyssa. My pronouns are they, them, theirs. I am a white human with dark brown hair in front of a blurred background.

 I am at yes underscore that too on Twitter. I can speak some of the time but not all of the time. I use augmentative and alternative communication when speech does not meet my needs.

I am definitely autistic and aphantasiac. I may be neurodivergent in other ways too.

If a question is addressed specifically to me, please wait. If it is addressed to multiple panelists, someone else can go first while I type.

I sometimes call April “autistic hell month.”

I do my best to ignore April. Last year my dissertation defense in April kept me busy. I could not pay too much attention to Autistic hell month because I was too busy trying to become Dr. Zisk.

This year I have a survey active during April so I do not get to ignore it. We started sharing it before April because I knew many autistic people would be too tired to participate once April got underway.

(BTW, the survey: Words matter. What words do you prefer when talking about AAC and the people that use it? Fill in this survey and tell us your preferences. https://www.surveymonkey.com/r/3NMXCHG
You can also help by sharing the link to the survey.)

 

If you are thinking about doing an awareness event but do not know where to find autistic experts to help you do it right or do not have the budget to hire one, remember that there is the option of Not Doing An Event.

 

I prefer resources that treat neurodivergent characters as human characters who do things for human reasons. Learning to understand the actions of different others and their reasons through stories is possible, if the stories give reasons beyond 'because they are broken in this named way.'

If you read a story about a person who acts for reasons, it’s easier to understand that story if you 1) might have similar reasons for action, and 2) would get similar effects from  similar actions. Both conditions can be violated in cross-cultural communication and in cross-neurotype communication, but you can still try.

 

No amount of evidence that an intervention can achieve a goal I do not have will magically turn into evidence that it can achieve the goals I do have.

 

I think about connections between cross-neurotype stuff and cross-cultural stuff: we can learn how to do cross-neurotype communication better from the parts of cross-cultural communication that are done well. And we can see that the problems are not unique to neurodivergent people.

I noticed overlap between my experiences studying abroad and my experiences as an autistic person. However, I got more leeway for my differences when studying abroad than when people assumed it was all about autism. This is common for white neurodivergent people.

We know we're different. You get a say in how we understand that difference, but trying to pretend we're the same won't go well.

Literally Speaking About Not-Always-Speaking on Autistics Speaking Day

This Autistics Speaking Day, I presented at the American EducationalStudies Association conference on my paper, “Am I the Curriculum?”

Given the origin of Autistics Speaking Day as a response to a Communication Shutdown event, telling neurotypicals to get off social media for the day to simulate and empathise with autistic communication difficulties, I think giving this literal speech on Autistics Speaking Day was fitting.

Autistic people often use tools like social media to support our communication. I believe that our doing so should be considered as the communication support it is, just as augmentative and alternative communication (AAC) researchers do for people they recognize as needing AAC. (I also think speaking autistic people should be recognized as needing AAC. Heck, AAC for everyone. Let's not depend on speech language pathologists specifically, or outsiders in general, to recognize communication difficulties that AAC could help with.)

I use social media to support my communication. That's literally what I'm doing with my blog. That's literally what Autistics Speaking Day is. The Internet is, so often, our lifeline. I am no exception to my statement that speaking autistic people can benefit from AAC, or that social media is part of this.

So speaking about my experience as an AAC user, as someone who often has to use tools other than speech (like social media, but not only social media) to communicate, on Autistics Speaking Day, seems fitting. Advocating for AAC for everyone, which I've said before and will say again, on Autistics Speaking Day, seems fitting.

And speaking back to the awkwardness of entering professional spaces as an autistic AAC user, to advocate for these changes, to advocate for increased access to AAC for us? Yes, that's part of Autistics Speaking Day too.

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. 

I'm apparently an #AAC talk example.

I took a class on augmentative and alternative communication in fall 2017. It was a tiny class, with only three students, which made it practically an independent study. Pretty early on in the class, I watched this video.

This quote stuck out, just a few minutes in. “Sometimes we find ourselves on the floor or under a desk because that's where somebody wants to be.” The context? The speaker is talking about how there aren't any prerequisites for AAC use, including behavioral prerequisites. 

I laughed, and then I got worried.

I laughed because I spend quite a bit of time on the floor, possibly under a desk. I hung out under my cloak, under the table, before my measure theory (graduate math class) final exam. I tend to sit on the floor when given the choice. People in the wearable biosensing lab (the lab my major professor runs) don't just know to look for me under a table if I'm in the lab. They know which table I'll be under with my laptop and whatever I'm reading, or with whatever object I'm doing emergency sewing on. My advisor is quite used to the fact that I sit on the floor during my meetings with him. 

Essentially, I represent this statement. I am the student who is often on the floor or under a desk. I'm also studying for my PhD in neuroscience and passed my comprehensive exams last week, so I'm generally not in too much danger of being denied access to communication based on behavioral prerequisites. (I am at risk of being denied access to communication based on the fact that I can usually speak well, so people could assume I'm faking when I need AAC. That's a problem, but it's a different one.)

My worry is for the people who are in danger of being denied access to communication based on ideas about prerequisites. I understand what it means that a kid hanging out under a desk is the example given here. I have to assume people have been denied access to communication systems for "behavioral" reasons including a tendency to sit on the floor or under desks. I even have to assume this is common. Otherwise, there would be no need to explain: yes, you can get on the floor or under a desk while working on communication supports, if that's where someone wants to be.

That's scary. I know my making it through school has a lot to do with my being passed off with the idea that "gifted kids are weird." I know how easily it could have gone differently. I've written before about one way it could have gone wrong: failing special education kindergarten. 

What about all the people where it did go differently? What about all the people for whom it's still going differently?

"They aren't having communication breakdowns"

I've heard plenty of arguments about why AAC isn't needed. Thankfully, I hear most of them in the context of people explaining what they do when they encounter them, rather than the context of people trying to tell me not to type to communicate. Today, Dana Neider, the blogger behind Uncommon Sense, gave the keynote for AAC in the Cloud today. She mentioned one that I hadn't heard before and I wasn't really expecting to encounter.

“They aren't having communication breakdowns.”

Now, I've studied a foreign language. I suspect many, if not most, of you have as well. I took Mandarin Chinese for 11 years (ages 11-21), and spent a total of a year, including the entire last academic year of study, in China. By the definitions set by the American Council for the Teaching of Foreign Language, I reached Superior proficiency for reading, writing, and listening, and Advanced High for speaking. This was hard work! Guess what's in the explanation of the Advanced High proficiency level? That's right. Occasional breakdowns that are based in language proficiency. (They don't talk as much about breakdowns that happen for other reasons.)

The next level up, Superior, is supposed to be equivalent to a college educated native speaker in terms of what you can say. (We're not expected to actually sound like one. Accents exist and every culture has its own common expressions.) So. One step down from a college educated native speaker, we're still talking about occasional language proficiency related communication breakdowns. And you want me to believe a K-12 student never has any? Sorry, but no. I don't buy that. I've met kids ever in my life. Heck, I've been a kid ever in my life.

Or. I'm a teacher. Trying to explain new concepts to people is literally my job. Do I use more than just speech to do this? Absolutely. (I presented at this same conference, about AAC in the classroom, for teachers who need AAC.) Do I experience communication breakdowns in the classroom on occasion? Again, absolutely. Of course I do. Students aren't sure what question I'm asking them. I'm not certain what question they're asking me. Communication issues always, always, have at least two sides. It's neither just me nor just them. If a tool can help either side, or both sides, repair the breakdown, still take it.

Besides, can you honestly say no one's ever misunderstood what you were trying to tell them? In the last few days, weeks, months, have you never been misunderstood, or misunderstood someone else? No one even got your coffee order wrong? Really? Because I got asked if I wanted a hamburger, and then got handed a cheeseburger when I said yes. I eat hamburgers, but not cheeseburgers (texture issues.) That's a communication breakdown right there. AAC wasn't required in order to fix it, but it happened.

So. We've established pretty well that I am 100% certain the person making this argument is wrong, not just in their conclusion, but in their premise. I don't think they're lying, but they're incorrect. Their student or client is absolutely experiencing communication breakdowns. Why don't they know?

1. Their client or student doesn't have the needed communication access in order to say they're having communication breakdowns. I know, from experience, that if I need to use speech in real time, I'm not going to be able to correct most misunderstandings. It's just not going to happen. So you might not even know there was a misunderstanding. Give me AAC and I have a shot. Which, of course, now means you know there was a problem. That's actually progress!
2. They've learned from experience that trying to repair communication breakdowns isn't worth it. Have you ever decided not to address a misunderstanding because you thought it wasn't worth it, or that it wouldn't work anyways? I know I have. And yes, I've done it in an educational context, with points for a class on the line. This past fall, even. In an environment where I had access to AAC and could totally have typed for the conversation. I didn't think it was worth the time or energy it would take, so I let it slide. Imagine that attempts to repair communication breakdowns mostly haven't worked in the past. How often are you going to try, even if the option is available?

Neither of these are reasons to skip the AAC. The first is actually a reason to provide it. The second … AAC won't fix this problem. However, if communication needs not being met was part of why past attempts at correcting misunderstandings didn't work, proper access to communication (likely including AAC) can have an effect on the decision-making process here. That doesn't mean they'll always decide to tell you about misunderstandings. Do you try to correct every misunderstanding you ever encounter? Or do you let some things slide, especially if you don't know someone well or don't trust them to change their mind even given the proper information? Besides, plenty of disabled people have reason to mistrust therapists. We might not want you to have the "correct" information! So providing AAC may or may not lead to you knowing about communication breakdowns when they happen, but if you think there aren't any, that just means you're missing them.


TL;DR: Everyone has communication breakdowns sometimes. If you think your client or student doesn't, that means you're not finding out about them. Maybe they literally can't tell you for communication access reasons, or maybe they've decided it's not worth trying to repair the breakdown. Make AAC available anyways.

What if they're stimming with the device?

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

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

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

Academicy Citations

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

"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.

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. 

Language choices and history

Yeah, yeah, I know, I've talked about this before. Assuming I caught all my prior posts, this is the sixteenth time I've talked about language choices for autism, though this one isn't quite the same as the others. It’s coming as the result of a good discussion that helped me clarify thoughts I'd been having rather than the result of someone insisting my language choice is wrong because they were taught so.

So: I hate being called “differently abled.” It feels euphemistic to me, like we can’t admit to the fact that I’m disabled. I also hate being called a “person with autism.” Even being called “on the spectrum” rankles, and not just because I think the idea of autism as a spectrum gets used to reduce everything into a spectrum of “less autistic” to “more autistic” and also “higher functioning” to “lower functioning,” with these two incoherent concepts also being considered to be the same[i]. It’s also the way the term has been used. It’s a sort of (very recent) usage history that makes me extra wary of “on the spectrum.”

And history is the key to my current thoughts. Every way I can think of to identify myself as Autistic or as Queer has history. Usually as a slur, in the case of Queer identity - Queer itself is an example of this. “Autistic” as noun? It’s part of the dehumanizing nonsense that got person-first language started in the first place.

Person-first language, or “person with autism”? Yeah, it started in a good place, where people with disabilities, mostly intellectual or developmental disabilities, decided that they wanted that language to emphasize their personhood. Professionals were (frankly often still are) forgetting that we’re people. Said professionals picked up the language. They didn’t pick up the intent: remember that we’re people. At least in the case of autism, and probably for other disabilities, they picked up a completely different idea: that the autism or other disability is somehow separable from the person, and there’s a “normal” person underneath. That’s a history I want nothing to do with – don’t call me a person with autism. Also, if you need a language construction to remember that I’m human I don’t want you anywhere near me. I don’t. I’m not sorry.

“Differently abled”? Technically true, I guess. It’s another one where there may have been good intentions originally – recognizing that we have abilities that typical people may not have access to, and that this can be a direct result of our disabilities. (Or, or different abilities?) It gets used as as a way to ignore the realities of disability, of access barriers, and sometimes of the reality that there are things we just can’t do.

“On the spectrum”? It’s been touted as a compromise solution to this language debate. Mostly by professionals who think “person on the spectrum” is less euphemistic than “person with autism” and by people “on the spectrum” who are willing to be tokenized, as far as I can tell. It’s not only unclear (there are many spectrums), but also still a person-first construction. That’s not a compromise! But folks insist it is one.

“Aspergers” or any variation thereof? 1) False. Literally does not apply. 2) When it was a diagnosis in the DSM, it was frequently applied to mean “high functioning” or to avoid scaring people with the “autism” label. It ties in with aspie supremacy, and that can kill. No way. That’s not just a history I don’t like. That’s a present I find morally reprehensible.

Now, I need to find a way to talk about who I am, what my experiences are as an Autistic person. I need to use language that will be understood. Making up new words is a valid option. It’s where new language comes from. I use plenty of words that were created in my community. But take a look at the history behind some of the words I said I have issues with. Some of them started in my community, or communities like mine. Then they got picked up by folks who want to pretend that the difference isn't quite real, isn't important, or can somehow be separated from the person (maybe needs to be in order for the person to count as a Real Person.) Even language that could be good has this happen. Then there’s the reclaimed slurs. (A lot of the language around Queerness is of the reclaimed slur type.) Just about all the language has problems of this sort. At this point, reasonable people can reach different preferences based on which bad history, which bad associations, which ones are we going to tolerate or reclaim for the sake of being understood?

Now, I am of the "queer as in fuck you" school of thought for most of my divergences[ii]. Disability is a word that scares people. “Good intentions” behind folks saying they don't see me as autistic, or as disabled are an indicator of how much disability is seen as a Bad Thing. Making people face the scary concept is actually an argument for using capitalized, identity first Disabled and Autistic in my case. Folks can sit with that particular discomfort, and if they tell me they don't see me that way or I shouldn't call myself that, they're getting asked 1) why they think their idea of me trumps my own, and 2) why they think they know better than I do what I should be called. If my identity is so uncomfortable for them that this is taken as attacking, we’ve got a big problem.

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[i] That would totally be enough for me to hate being called “on the spectrum,” though.

[ii] This includes my actually being Queer, just to be clear.

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.]

"Your taste buds will change"

CN for food and vomit.

That's one of those sentences I read every so often, which is technically true, but which doesn't actually lead to the conclusions I see it used to support. Taste buds really do change with age! This is a thing that happens, and it's part of why there are certain foods kids tend not to like but which adults are more able to tolerate. (I think most alcoholic drinks go in this category, where kids tend not to like the taste anyways?)

As true as it is that tastes change, there's some things my brain has decided I need to explain now about why this doesn't mean getting into a power play with someone over what they eat and how they're "picky"  is a good idea.

1.  You probably don't know what the result of "pushing the issue" is going to be. I don't just mean long term results. I mean short term, in the minutes to hours right after forcing the (in)edible object down. Obviously, you don't expect it to be a big deal, or else you wouldn't be trying to force a "picky" eater to eat something they can't eat. How wrong are you ready to be? TMI alert, last time I made myself drink something that was an issue, it came back up. (If it hadn't been something I was medically supposed to have, I wouldn't have tried. It still didn't work, because it didn't stay down.)
   
2. The fact that someone's tastes may change and they may be able to eat a food later doesn't mean they can tolerate it now. The change hasn't happened yet. So even if you're correct about the nature of the upcoming change, you're still trying to make someone eat something they don't currently tolerate. See point 1.
   
1. Also, even if you were going to be correct, you can cause that not to happen by creating an association between being forced to eat the food and whatever sensory issue it's hitting. That can create a new issue with the food in question, besides taste...
   
3.  The issue may not be the taste. I can't drink anything carbonated. You might think that's a rather broad category for a taste issue. You'd be correct. It's not a taste issue. It's best described as a texture issue, and you've said nothing about texture sensitivities changing. In fact, most of the foods I can't deal with are texture issues, not taste ones.
   
4. The changes in taste may not be the ones you expected or hoped for. Some foods that were issues before can become non-issues, but it can go the other way too. As a very small human, I could eat mushrooms. As an adult human, I can not eat mushrooms. (It's also the texture, not the taste.) Chocolate pudding was a "safe" food for me as a kid. It's about 50-50 on my being able to eat it now. (Texture again. Also, partially related to times when I didn't get the choice about yogurt, which has never been an OK texture and which is close enough to pudding that making yogurt even worse made pudding a problem. See point 2.1.) I ... actually can't think of any foods I can have now that I couldn't deal with as a kid. 

Tastes do change as we get older. That doesn't mean they'll change the way you want them to, or that a possible change that hasn't happened yet justifies acting as if it's already happened. 

Alyssa Reads Critical Studies of the Sexed Brain

This is another one I read for neuroethics. I was considering using this article for my presentation on a neuroethics related topics, but that didn't happen because someone else split off my too-large group and it wasn't too big anymore. We actually wound up talking about a medication used to treat addiction ... that can itself be addictive. Fun times. So, here's some of my thoughts from reading Critical studies of the sexed brain. 

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

“They suggest that we work and talk across disciplines as if neuroscientists were from Mars and social scientists were from Venus, assigning the latter to the traditional feminine role of assuaging conflict” (247). sigh I am not surprised that some scientists think of social sciences that way.

Brain plasticity+ identity formation in intersex people, brains vs. genitals. That's going to be interesting. By which I mean, I have concerns. I have friends who are intersex. I know people who do intersex activism. And I know intersex people who concluded that intersex and/or nonbinary is their gender identity rather than picking one of the two binary genders. Hope the author isn't assuming a gender identity must be one of man/woman. Heck, mine isn't that and as far as I know, I'm not intersex.

Oi at calling autism a disease. It is a neurodevelopmental disability [or a neurotype, that's a good word and also let's remember what I'm saying when I say disability - the social model of disability is a thing.] Also I know the author found neurodiversity stuff because the article comes up when I search the journal for neurodiversity, what the heck? I don't expect to hear it called a neurotype in anything done by neurotypical(-passing) academics but really? Disease?

Ok, gender in the brain as a result of plasticity, that's going to be interesting – “reflect gendered behavior as learned and incorporated in a social context” is a thing, but please, please don't let this turn into “male socialization” for trans women or “female socialization” for trans men, or either of the above for nonbinary folks. The socialization of “consistently mistaken for X while actually Y” is not the same as the socialization of “X.” Ok, individual differences are a thing. That's good. “Plasticity arguments are extremely interesting as they wage war against both biological and social determinism, reductionism, essentialism, and other -isms.” Phew that's not the socialization argument I was worried about, I don't think.

Does she mean “cishet” by “normal people”? (Cishet=cisgender, heterosexual.) I appreciate the quotation marks around “normal people” but there probably is another word for what she means and using it would be nice.

Now we have one of my rage buttons. All caps time!

OH MY GOD STOP CALLING NEURODIVERSITY AN ASPERGERS THING. THE ANI PEOPLE WERE CLASSIC EVEN IF THEY TALK NOW, AND ALSO DIAGNOSED BEFORE ASPERGERS WAS IN THE DSM. MEL BAGGS IS NONSPEAKING. AMY SEQUENZIA IS NONSPEAKING. I'M CLASSIC EVEN THOUGH I USUALLY TALK. STOP. STOP. SERIOUSLY THE ROOTS ARE OLD ENOUGH THAT ASPERGERS WASN'T A DIAGNOSIS YET WHEN A LOT OF OUR FOLKS WERE DIAGNOSED, WHICH MEANS THEY WEREN'T DIAGNOSED ASPERGERS. THEY ARE NOT ASPERGERS, WHICH IS ALSO NOT A DIAGNOSIS ANYMORE. (maybe was when written?)

Intersex activist history! I knew about unwanted surgery, gender role training, and folks wanting their own intersex bodies back. I also know someone who was put on unwanted hormones. What are the results of Diamond getting so lauded while speaking in terms of brain sex, though? It's still the language coming from the people who try to enforce the man/woman dichotomy. What are the results of using the "sexed brain" discourse while not necessarily fitting in the binary? 

1 Walker, N. (September 27, 2014). Neurodiversity: Some basic terms and definitions. Neurocosmopolitanism: Nick Walker's notes on neurodiversity, autism, and cognitive liberty. [blog post] Retrieved from http://neurocosmopolitanism.com/neurodiversity-some-basic-terms-definitions/ is a good explanation of the neurodiversity related vocabulary I tend to use when thinking about neuro stuff.