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, 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.

Wednesday, June 21, 2017

Alyssa Reads: Critical Studies of the Sexed Brain -- Communication thoughts

I continue my thoughts from reading Critical Studies of the Sexed Brain. Because I had more and then forgot to put them up here. Go me.  Here's the citation again if you want it:

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

And now the quote that got me thinking:

Critical neuroscientists frame the question of a science gap between neuro- and social scientists, experts and the public, just as couple's guides conceive of the gender gap in terms of unawareness, misunderstanding, or ignorance, promoting the idea that all matters can be settled through enhanced communication and better knowledge of each other's distinctive language, culture, needs or concerns.”

This needs more attention paid to it. Here is a big issue: there is a power imbalance. Patriarchy is a word for the imbalance in the couple's guide, and it would relate to the sciences one too since hard sciences tend to be thought of as men's fields while social sciences are thought of more as women's fields. (Accuracy of this thinking is another issue, but STEM in general runs man-heavy.)

That contributes to the rhetorical positioning of the fields, where neuroscientific “facts” can't be questioned by social sciences, even if questioning the facts isn't exactly what's going on. Sometimes it's questioning the causes and interpretation of the reported result rather than questioning whether or not the result was correct, or reproducible. Though the fMRI study of a dead fish is relevant, and so is the fMRI of the same person daily for about a year – fMRI is not infallible, no more than any scientific procedure is, and pretending it is will get us into trouble.

The author then asks about “lay expertise” from patients, relatives, and activists. Since I'm studying neuroscience but came from the Neurodiversity Movement before I got into neuroscience, I wonder where that puts me. As a neuroscience student, I'm one of the science people. As an Autistic person, I'm somewhat a patient. (Not much of one, haven't been in therapy related to autistic traits for a while, but when I write as an Autistic person, I go in that category.) And there is definitely a power difference between the roles. There has to be, for Theory of Mind to have been interpreted to mean autistic people can't understand our own experiences. Not everyone making use of the word thinks that, but it's an interpretation I've seen way too much of.

The author then points to this framework as “preventative politics,” where it keeps the peace by avoiding/assuaging conflict in the name of interdisciplinarity. She argues this could prevent good science that would come from controversy. I'd agree, but also say that it can involve silencing of ideas that aren't status quo as part of the peacekeeping.

Another issue with the focus on communication is that it only works if everyone is acting in good faith. It's the same problem with Nonviolent Communication and similar: if everyone is acting in good faith, it works fine. If anyone involved is actually seeking to maintain control or to do harm, consciously or not, it's not going to work. If one person's goals actively exclude the other person's goals, better communication can lead to figuring this out, but not to solving the problem. Seeking to expand the domain of one's own field without worrying too much about the domain of anyone else's field could lead to a similar failure in interdisciplinary communication ideas.

Tuesday, May 30, 2017

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.]