Note For Anyone Writing About Me

Guide to Writing About Me

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

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

Citing My Posts

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

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

Thursday, October 5, 2017

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.)

Tuesday, September 26, 2017

"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.

Thursday, August 10, 2017

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. 

Monday, July 31, 2017

Distraction or DDOS?

Heads up that this is about the current US government, including the POTUS. Meaning: Everything is a mess.

Every time that several bad things are happening at once, call them R through Z, I see comments like this:
  • Don't worry about X, it's just a distraction (from Y)!
  • Z isn't a real threat, it's just a distraction (from R).
  • They want you focused on S instead of all the other stuff, don't fall for it!
Here's the problem: all of R through Z are legitimately bad. Every single one of them. They might not affect you personally, but they are all bad. Some are foreign policy disasters. Some are complete failures of how our government is "supposed" to work, and not in ways that would help marginalized folks. (A massive change in how policing is handled could be great. Encouraging brutality in arrests is not the massive change that could be great. It's taking the status quo and making it even worse.) Some are fairly blatant attacks on one group or another. (Taking Medicaid apart will get disabled people killed or institutionalized. See also: why ADAPT has been protesting at pretty much all things healthcare.)

These aren't distractions. To borrow a term from the Internet we rely so heavily on, it's a dedicated denial of service attack (DDOS). The idea behind DDOS is that a person or group sends so many requests to a server at once that the server crashes and loses most or all of the requests, making whatever site it's supposed to host unusable. Think of all the bad things happening as requests - you want to do things about them, hopefully. Think of yourself as the server - you have a limited capacity to handle requests, or a limited capacity for issues to take action about. If you try to take action on all of them, you'll get overloaded and quite possibly handle none.

That's precisely the idea behind DDOS. Overwhelm the server (you, in this metaphor) and they can't do anything. For actual servers, there are a variety of ways to handle it but no perfect solutions, because a server that can't respond to requests for information isn't much of a server at all. For us, any one person clearly can't pay attention to every single issue. This isn't a call for you to focus on more things at a time. (That sounds like a bit of a contradiction, since to focus you generally need to narrow things down.) 

So: you can't focus on every single issue at once. You still need to focus on a few issues, or even just one. That's fine. The difference between understanding all the bad things happening that aren't your personal focus as distractions and understanding them as part of a DDOS attack is what happens when you encounter another person who is focused on a different set of a few issues. If those issues are distractions, their focus is a problem. If those issues are part of a DDOS attack, their focus is great. You want to know that other people are covering these other issues! Splitting up the issues between different groups of people so that everything gets covered even though you don't cover everything is the best way we have of responding if all the issues are real.

And what about things like foreign connections and the whole Russia mess that we know Trump doesn't like to have talked about? Noticing what news tends to come with increases in the DDOS onslaught is still useful. That's the news that they really want to make sure gets lost because we're too overwhelmed to deal with it.

Saturday, July 29, 2017

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.

[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.