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

Sunday, August 31, 2014

Language and Interaction, Online and Offline

Something I've noticed different between online and offline is reactions when I say things.
Especially about language.

I say offline/online rather than online/real world because the internet is a subset of the real world. "Digital" doesn't mean "not real" any more than "socially constructed" means "not real"- that is, it's real, it exists, but there's a certain limit on where you'll run into it.


Online, I hear a lot of "not like my child." I hear a lot of "so high functioning." I hear a lot of "You mean a person with autism."

Offline... at least in the offline places where I am, not so much. It might be more about the types of spaces I'm in offline versus online, in that offline, disability services is about the most disability-centric place I wind up on even a semi-regular basis.

I get a lot more "Oh, I'd love it if you could talk to my kid, he doesn't know any adults with autism," and I semi-joke "Oh, he still won't, I'm an Autistic adult. Very different, you understand." And they maybe ask why, maybe don't, but they don't insist I'm calling myself the wrong thing usually. At least, they haven't done it at me yet.

I do get a lot of "I couldn't tell," still, but it's always followed by "huh, you're right" when I point out that the descriptions they'd see in media are mostly little white boys rocking and screaming in the corner, not, well, adults.

I get a lot more "I never thought about that" when I say... often times the same words about disliking the word "differently abled" or "assistive tech" (though in assistive tech's case I'm not sure what to replace it with, for differently abled I just don't use it because it was already a euphemism for disabled.)

What got me thinking about this was the comments section on X Years of Experience (actually a nice short discussion) and how that seems to be unusual. Whereas that kind of discussion isn't all that unusual when I get disability related topics going offline in places that weren't disability-themed before.  I'm  not sure what that means (other than that I'm pretty lucky to be surrounded mostly by not-terrible offline.)

Saturday, August 30, 2014

Being a teacher who can't always speak

Today, I did something that's kinda hard, and kinda scary, and kinda risky. I told the department chair (so basically my boss, because I'm a teaching assistant and he's also coordinating the course I'm teaching) that I'm not always able to speak. I also told him what my backup plan is for those times (it's a pretty good backup.)

It went fine, by the way.

But I wanted to write a bit about what I think made me so lucky there, because there's some things I was able to pull off that not every disabled person can do, and these are relevant things! And it's not fair, and it deserves talking about. So does the fact that even with all the things I have working in my favor, it wasn't actually guaranteed that I'd get the good result I got.

Thing the first: I did my undergrad partially in this department (and partially in other departments in the same school.) That means that everyone in the department already knew who I was, and most of them actually knew me. I was that freshman who somehow managed to end up tutoring Real Analysis. What this means is that I got the chance to prove my ability as a tutor and as a student before anyone knew that the disabled side also exists.

Thing the second: I don't have big bulky tech that is obviously coded as "for disabled people" on my person... ever. My text to speech is on my laptop, which is a pretty common thing for a college student or grad student to own and carry with them. This means that my assistive tech's status as helping me with an aspect of my disability isn't clear until I start using it for that. I do a lot of other things with my laptop, same as most students do a lot of things with their laptops.

Thing the third: While someone who knows common traits and has a good idea what the tip-offs are for autistic adults will find me not even a little bit subtle, most people don't immediately know that I'm disabled upon talking to me. If they could tell immediately, my "pass for a little bit, then mention that I'm disabled a bit before I need any accommodations" method would be impossible to actually do.

Thing the fourth: I got lucky. Even when all the other things line up well, luck of the draw is still huge. (Luck of the draw may not be enough when the other stuff doesn't line up.) My department chair's initial reaction was to ask what he/the department would be able to do to help, and that I should let them know if I needed anything. I actually don't need much from them: I need them to not take issue if they see me using my text-to-speech in the classroom or if they find out about my using it. I need them to have my back if someone else takes issue with the use of text-to-speech.

What I've got:
  1. Departmental not-taking issue and backup if someone else takes issue.
  2. Offer that if speech is kaput I can text the office and they'll send another TA over if needed. (Probably not needed, the point of my backup methods is that I can keep teaching even is speech goes kaput.)
  3. Statement that if my classroom's speakers turn out to be randomly incompatible with my text to speech/audio output, they'll get me moved into a classroom with compatible speakers. 
That's actually more than I asked for, but it's all stuff that's a good idea on their part. I want to get it in writing because a big piece of this was crossing my t's and dotting my i's to cover my hide from any potential students taking issue, so I will want to talk to disability services, but yeah. Seems to be working OK in my case, and my main issue is "So the solutions on the practicality side all exist, why is this sort of thing unusual enough that none of the classroom media assistance people had heard of sticking text-to-speech into the audio system?" My secondary issue is "So um maybe enough education that the phone isn't the first method of contact suggested for the event of speech going kaput would be good?" Because that was suggested before texting was, and if I can't speak, I can't phone. (Not that I do well with phones when I can speak, but...)

Friday, August 29, 2014

Carnival of Aces: The Unassailable Asexual

That's the theme. It's not what I am. One of the pretty common things folks say to try to invalidate asexual identities is "you're all just autistic." Unfortunately often, the group response is "We're not just autistic," which, um, some of us are Autistic and asexual. This is a combination that exists. (There's a difference between a person stating that they personally aren't autistic as a factual correction and someone playing into the idea that autism means "fake" asexual while defending themselves from that trope. Disability and Asexuality might have been the theme I went with when I hosted the carnival, and by might I mean totally was.)

Since I'm not entirely sure where to start on this idea, I'm borrowing a bit from "Oh the stars you can earn!" By that, I mean I'm going to go through each of the stars there, explain briefly why I do, don't, or kinda get this star, and any effect that I think that has on me. Or whatever comes to mind from reading about that star.

The GOLD star: "You do not resemble someone who is broken."

I don't think neurodivergence means broken, but enough people do that I completely and totally fail to earn this one. But I fail in a way that assumes nonsexuality (more like the way children aren't sexual) than asexuality. I guess it's sort of an assumption of not entirely understanding sexuality?
Also school abuse has happened.
So yeah, I don't have this one, not even close. But mostly it's occasionally made me feel like a bad disabled person (that whole nonsexuality thing) rather than messing with the asexual identity directly.

The SILVER star: "You have certain knowledge."

Well, certain enough for me. I don't have a sex drive, I don't have a desire for sex, and on top of that, it seems like I've got sensory issues in that area. (I think that means I get to dig up my gold star, reanimate it, and kill it again?)
That means certain enough that I'm happy to just tell people to shut up until they have a clue if they get splainey, but meh on them actually listening. This whole being 22 thing, it's a thing.

The BLUE star: "You conform to societal norms."

Eh. Not really? My gender is weird. I don't entirely get it. But it's definitely not binary. I'll get back to you when I have a clue. But I do fall in love, I think. Also, what is desire to see people face to face?

The RED star: "You are different from the norm."

In a lot of ways, yeah.

The RAINBOW star: "You conform to subcultural norms."

Yeah, probably. I fit in fairly well in a lot of autistic spaces, as long as they are ones where being asexual is an accepted thing as well.

The GIANT BALL OF GAS star: "You conform to 'the way things work.'"

I am gender-weird, but was absent from high school more days than I wore not-a-dress-or-skirt. Not because of a uniform. I just like dresses and skirts for sensory reasons. It's a very nice woosh, and they are loose and long and it's great. Jeans are sensory terrible. Therefore skirts and dresses.
Or sex just sounds terrible to me. I'm not the opposite of desire as indifference. I'm WHY NO GO AWAY.
Or I like my hair long.
Or I'm actually kinda into (funky) fashion design.
Also I was in tenor bass choir as a tenor second, only chick-like person on Ultimate Frisbee, yadayada.
Oh, also I was simultaneously the slowest person on the cross-country team and the captain. That's not 'how things work.'

The BLACK star: "You conform to asexual community narratives."

Eh. There's a "but I like pleasing my partner" narrative that, well, no. I really didn't have much of a thing for that. He wanted to be able to please me, but in this particular area the only way to do that is just never need to go there, and it was incompatible, and that was actually part of why we decided to go back to being good friends. Which we still are, by the way.
There's also one about cheerleading sex for other people. I don't want to hear about it. I don't usually like romance subplots. I don't like movie kissing. I see folks writing about how people make a fuss about open same-gender displays of affection but not different-gender displays of affection? I know that's absolutely a thing, I see the reactions all the time. Totally not going to argue with the pattern. As an asexual person who is NOPE on the sex, I actually do avoid the different-gender displays in media. Often more than the same-gender ones, actually, because the same-gender ones are at least written with fewer sappy tropes, usually.

The PURPLE star: "You represent asexual demographics or asexual diversity."

I... think that applies to everyone?
I mean, without being not-asexual. 

Thursday, August 28, 2014

X Years of Experience

As an Autistic adult, when I see a professional listing some large number of years experience working with autistic children (or working with children with autism, that bit of language worry isn't the one I'm talking about right now,) I get kinda nervous. I don't really want to use that professional.

I've done some thinking about why, and there's a few bits.

Bit the first: children.

Why children? Is this a hint that the person thinks of all autistic people as children, regardless of age? If it's that, run far and run fast. That's extremely unsafe, both because the way children are treated is messed up and because the idea that we're children forever is just factually inaccurate. Even if I were working with the same set of cognitive tools now as I was at 5 (I'm not,) the extra 16 years working with them makes a big difference.

And if it's not that, if it really is that they only worked with autistic children, why did they only work with autistic children? There are answers to this that are OK, psychologists specializing in children's issues having autistic children be a specific subset of children they work with a lot is a thing. But. There are also a lot of answers to this that are worrisome.

Like, "Autistic people who worked with this person as a kid ran as soon as they could." That's not a good sign. Or if the person actually really worked with parents, that's a worry- that's an issue Neurodivergent K ran into when she was trying to get services. Places said they only worked with parents.

And whatever the reason, if they only ever worked with autistic kids... they probably don't know enough about autistic adults to be much more help to me than someone who knows they're clueless about autism. They probably don't love hearing it, but it's true. Autistic children and autistic adults are not the same! We have different issues, have different goals, have different priorities.

Bit the next: working with autistic, as it tends to mean.

Unfortunately, we live in a world where "working with autistic people" tends to mean "teaching autistic people to look less autistic" or "teaching autistic people to be obedient." That actually applies for a lot of disabilities, it's just that autism is the one where I have the most opportunity to know it.

This is pretty directly opposed to what I actually need. Hiding my autistic traits takes energy I don't really have to spend, and spending lots of time and energy explaining why is only worth while if I'm actually going to get help of the sort I do need out of it.

Bit the last: experience.

Remember that the experience is in the things I just talked about. That means it's going to be experience in deciding what an autistic person needs for them, deciding how to accomplish that goal, and enforcing it, probably with a good bit of talking over the autistic person.

Do I really want someone with large X number of years experience talking over autistic people with the idea of making us act less autistic to be the one "helping" me deal with the mismatches between me and the neurotypical-dominated world?

Wednesday, August 27, 2014

Two New eThings and Happy Birthday to Me!

I am 22 today!

I also have two new things out. (And if suggesting you get them because it's my birthday will work, then consider this said suggestion.)

The first is a short science fiction story.
There is an autistic character. There is a character who is technically a cyborg. There are a bunch of characters who are alien computers. There is no intersection between these categories, and I've been told there's some response to/coverage of the trope where the alien or the robot is like the autistic character.
It's also fun with a smuggler and her friend visiting a planet of sentient computers.
Cover of "Where None Have Thought to Go." The background is the surface of a "planet" and stars, composite from photos courtesy of NASA/JPL-Caltech. There is a semi-transparent brain and computer chip combination superimposed over the stars, and the title and author are in white text. (Alyssa Hillary is the author.)
I also have a collection of poetry, Poems Can Be Fun(ny). 
It's about what the title suggests: original poetry, humor included.
Cover of "Poems Can Be Fun(ny)" by Alyssa Hillary. The background is an abstract geometric design in pink, blue, and purple by the author, and the title and author name are in black text.
All the things are here, just in case my other stuff sounds interesting. I do have another story with an autistic character already, and she has point of view for the whole story. I also have a (very short) story about a tomato and cheese soup ending the world by consuming it, if ridiculousity if your thing.

Now for stuff that's mostly not self-promotion, and mostly is life updatey stuff.

1) I know, I know. The last three days on my blog have been commercial-ish. Tomorrow's post and the next days post are written and scheduled, and they are not commercial at all.

2) I'm moving back to school today! I'm going to be a teaching assistant, teaching a section of precalculus. That's gonna be pretty cool.

3) Apparently The Queens Readers is just about ready, which is yay because I'm in it. I'm talking about neurodiversity in Tamora Pierce's work. The criticism parts just happened to not fit in with the rest of the essay according to the editors (not sure if I entirely trust that, but I really was disorganized and writing at the last minute so not sure that I distrust it either.) So I really do believe the positives that I said, just remember that there are also negatives that I didn't say. (Like chemical restraint in Cold Fire oh my god, but also realistic terribleness...)

4) I have a paper accepted for the INSPIRe conference that actually connects my disability side and my STEM side, so that's cool. I need to finish actually writing it though.

5) About a year ago, I was going ARGH about a thing with The Feminist Wire and their call for papers, which inspired a proposal for a text chapter. Well, the chapter got accepted and is a good bit of the way written.

6) That whole Accessing The Future thing I talked about the day before yesterday? I think I know what I'm submitting. It's in the same universe and a semi-sequel to Where None Have Thought to Go, but with a more mixed narrative format. (Presenting a piece of tech you see offered to the autistic character in the story to folks on Earth and watching the reactions from quite a few directions, essentially, with some additional side-plot themes that get some more into examining the alien/robot as autistic trope.)

Tuesday, August 26, 2014

Muchables Chewable Jewelry Review

Amazon's being a little slower than usual about publishing (well within their stated times, just slower than the prior times have been) so I can't do a story announcement yet. But I can tell you about Munchables chewable jewelry, which is actually pretty cool. The person running it posted a bit back asking about folks who'd review, and I said if she was interested in the autistic adult using it themself perspective I'd be game, she sent me a piece, and here I am.

I've got essentially this one, just a little longer because I'm an adult and therefore larger than a kid: custom pieces are totally a thing, and mine is custom: 25 inches instead of 22 inches, longer than kids because I'm not a kid but shorter than the adult ones meant for someone other than the wearer to be the chewer.

Anyways, it's silicone, food grade, haven't tested out the dishwasher-safe yet because I haven't needed to wash it yet, but it looks and feels like it would be. Besides, it's done all the other good stuff, like be sturdy enough to stand up to an adult bite, have a good texture for chewing, and generally working as a stim toy for chewing.

I know the marketing currently leans towards selling to parents for their kids (like, oh, all the sensory stuff ever) but it really does work fine for adults who chew and are willing to wear this stuff. The custom design thing means you can choose something that will work for you, which is nice. I'm gonna go with worth it, and also with I'm bringing it to school with me. Yup. Grad TA with a chewy necklace. (So I might not wear it in class....)

Monday, August 25, 2014

Blog hop: Accessing The Future Fiction

I just found The Future Fire thanks to a friend of mine, That Crazy Crippled Chick, because she linked me to an article listing 5 positive representations of disability in science fiction. As a disabled person (and a disabled writer who sometimes does science fiction and fantasy,) that's totally a thing I want to see.

Anyways, they author of that post is also crowdfunding for Accessing The Future, a planned anthology of speculative fiction (so basically everything I read and most of what I write) with disability themes. I'm totally going to submit a story once they get to that point.

Also a blog hop.

  1. Tell us about your Work In Progress (WIP) / Current Read (CR) and the world it's set in.

    I'm almost done with a story tentatively titled Where None Have Known to Look, where a smuggler and her friend visit a race of sentient computers on a planet no one else knows about... and the friend has the choice to become part computer. It'd be useful, certainly, but people already think he's not fully human- is he willing to let them be right?

    The reason folks think he's not fully human is that he's autistic, so while I didn't think too much about the world it's set in before... I'm going to say it's socially pretty similar to that of today, just adding in contact with interstellar trade routes and the extra technology involved in making that possible.

    By almost done I mean tomorrows post is probably going to be the announcement that you can buy it on Amazon. (I've got other stuff there already.)
  2. Who are the most powerful people in this world?

    At a local to planetary level, there's a good bit of variation, but in general, the folks who control interplanetary trade control most everything else. At planetary levels, that means whoever was rich enough to get into the space trade early (for their planet) has come out on top.
  3. Where does their power come from?

    Controlling trade means they're controlling how goods and services flow, which means they can make or break a planets economy if they really want to. Mostly they just want to have that as an unspoken threat, but it's effective enough. Think the current corporate mess, just at the interstellar level.
  4. What physical and/or mental characteristics underpin their positions of power?

    Whatever underpinned power on their planet before they made interstellar contact still does- so on Earth, being white, male, heterosexual, cisgendered, ambulatory, generally able-bodied, close to neurotypical, and having received a western-style education is still a big determining factor.

    If you get off your home planet for whatever reason, most people you meet won't know what your species-typical and culture-typical things are, so it reverts to your place within the trade hierarchy, unless and until you're dealing with someone familiar with your planet and species, at which point the same biases you deal with at home are coming into play.
  5. How does this affect the weakest people in the world?

    It's theoretically possible for someone closer to the bottom of the heap to be an exception and get off-planet, which is totally a functioning escape method: Trevina is Hispanic, and she faces racism on Earth. But she's an independent trader/smuggler (mostly grey market,) and when she's off planet she'll rarely run into anyone who knows enough about humans to understand that skin color has any significance... or even that we come in multiple colors. She'll just deal with her status as an independent trader (common folk love her, big trading companies hate her, law enforcement doesn't really trust her but will probably look the other way unless she does something really egregious because she's considered a little fish) and as a foreigner.

    But she's made it to that level, which means she's rather emphatically not one of the weakest people in her society. She's got some social categories in common with her planet's share of them, which is very different, especially considering that she's mostly not on her home planet.

    People generally don't starve- it's gotten to the point where starvation would be bad enough publicity that they make sure everyone can eat- but it's not pretty. Shelter is not a given, nor is medical care, unless you can pay. Most people don't actually have any contact off-planet unless a close friend or family member has gone to labor on an asteroid or in helping make a new planet fit for life, but jobs are often moving to planets where wages are lower or resources cheaper. For the moment, resources are fairly expensive on Earth but wages are low, so service jobs and low-resource crafting (artisanal work) are easy to find. 
I didn't realize I knew this much about my universe. I might need to write more in it...

Wednesday, August 20, 2014

The Beginning of Her Hell

It's another short story! This time, I'm following an autistic girl named Leah, stopping in to take a look every so often from when she's about six months old through sometime in high school. Other people are... realistically terrible.

You can get The Beginning of Her Hell on Amazon for $0.99.
Image is of the cover of "The Beginning of Her Hell." The title is in orange text along with the author's name, Alyssa Hillary. The background is white, with a pair of blue eyes looking out over a typewriter.

Thursday, August 14, 2014

What if autistic people guess other's mental states MORE?

I've been (slowly) reading Daniel D. Hutto's book, Folk Psychological Narratives: The Sociocultural Basis of Understanding Reasons. I say slowly because, well, it's slow. It's meant for people who are much more able to handle (and thrive on) philosophy jargon, as opposed to my sometimes ability to essentially liveblog it and hope that what I wrote out in what amounts to a liveblog in my own language sticks.

I'm only bothering at all because the ideas in the preface looked interesting, and I'm only able to at all because this one is better than most about using words I can understand and providing examples I can understand.

Right now, I want to talk about an idea that reading his stuff has let me work through a bit better. Here's some of the stuff from him that I'm looking at:

  1. It makes sense to ask if we even seek to understand people using predictions and explanations anyways. “For one thing, it is not plausible that we could take a detached interest in the movements of all those we encounter, for to do so would surely sap our intellectual resources” (250.)
  2. Hutto repeatedly points out that speculating on others reasons for their actions, even when we have evidence to support us, is unlikely to get us the right reasons, and that while the person's own explanation for why they acted isn't 100% foolproof, it's way more likely to be accurate than the guess is. I think I have this in my notes 3-4 times and I'm still on chapter 1 (and its endnotes.)
  3. In some cases, a person's beliefs and desires could be sufficiently different from those expected that knowing what they were doesn't actually help make their actions understandable. It just moves the confusion from “Why did you do that?” to “Why would you think/want that?” In that case, further explanation, using cultural differences or individual differences, is needed to understand. (Paraphrase from a paragraph on pages 7-8.)
  4. Stories can help us understand unusual actions: they can either show us why the reasoning behind an action is actually familiar or they can make it familiar. (Summary of a paragraph on page 8.)
  5. Sometimes the behavior of others is so erratic that we have no option but to regard those individuals in the same light as we do objects” (8.)

I think that covers the ideas and quotes I'm using for this bit.


Now for immediate responses I had to each of those things.

  1. I've seen a lot of autistic people write that trying to understand what others are doing, trying to understand social situations, is exhausting. It's cognitively taxing! As an autistic person, I'm going to agree. Handling social situations does “sap [my] intellectual resources.”
  2. And people insisting on taking that kind of spectator guessing without listening to the person's explanation when trying to explain the actions of neurodivergent people (my experience would be as an autistic person) is basically using this kind of logic. No wonder it doesn't go well! Folks, we already know it doesn't work that great when it's within the same culture and neurotype! (Grumble grumble theory of mind grumble grumble doesn't know what it's like to be themselves grumble grumble nonsense.)
  3. Oh, you mean like people thinking big parties are fun? Or that strobe lights are fun? Or that fluorescent lights were a reasonable idea? Or one of any number of ways that sensory processing and general cognitive differences mean that people's wants could be different to the point of not being able to understand them.
  4. Huh. So that's going to tie into representation stuff for all the groups ever. If there aren't stories about neurodivergent people acting for reasons that make sense to neurodivergent people, then it'll be harder for folks to understand the reasons neurodivergent people might have for doing things. Which goes back into thinking we're not understandable. I guess I'll keep writing fiction with autistic characters, especially protagonists, who don't die, get cured, or get sent away.
    1. The reason given that we would do so is when their actions are super-duper not understandable to us. Super-duper not understandable, not even a little bit sense-making.

    2. Isn't it people in privileged and majority groups who tend to have trouble seeing members of oppressed and minority groups as human? And the stories are about the people in the privileged and majority groups, so... yeah, actually this totally fits.

Now, I have some connections between the things!

Hear me out.

What if it's not that autistic people have some sort of inability to use folk psychology or theory of mind or any of those other things? What if it's that the reasons for doing things that make automatic or near automatic sense to autistic people are sufficiently different from the ones that make automatic or near automatic sense to neurotypical people that we have to resort to those kinds of guesses more? Then we run into the fact that no one is actually very good at those guesses.

And what if we resort to those guesses because the reasons that make sense to the dominant neurotypical culture are supposed to be “obvious” and we get laughed at (and probably still not answered) when we ask?

What if the idea that autistic people see others as objects... is because that's what most people do, at least a little bit, when their actions are super-duper impossible to understand, and the differences aren't being explained in ways that make sense to us? (I mean, also autistic people generally don't actually think of other people as objects.)

What if the exhaustion that autistic people often have trying to do social things is because, unlike people who are close enough to the mythical exactly average neurology that these expectations can be picked up by osmosis, we do have to use the kind of prediction and explanation that Hutto was arguing against on page 250, and he's right that the problem with doing that is exhaustion?

What if a willingness to explain the reasons and cultural underpinnings on the neurotypical side, and a willingness to listen to the neurominority-side explanations, could go further to solve the supposed lack of theory of mind or inability to use folk psychology (different things according to Hutto, and both things that I think aren't what's going on) than any amount of “therapy” to teach those skills ever could, because those skills weren't what was missing?

And by what if, I totally mean that I think those are what's going on. And I know other neurodivergent people have thought of a lot of these things before, but I think the specific way of looking at it through Hutto's ideas of folk psychology stuff and challenging how the neurotypical folk do things might be new. Also the turning theory of mind upside down and saying that  maybe we resort to that more, and that since it's not that reliable for anyone, that's part of where social differences are coming from. (Which would make the social differences a lot less "core" to autism than they're usually treated as.)

Work Cited
Hutto, Daniel D. Folk Psychological Narratives: The Sociocultural Basis of Understanding Reasons. Cambridge, MA: MIT, 2008. Print.

Tuesday, August 12, 2014

The Apocalyptic Soup

I wrote a short story!

The main idea can probably best be covered by a floating sphere of soup declaring that everything shall be soup.

The folks who've read it so far liked it. You should consider getting it and reading it, because maybe you'll like it too.

You can get it here!

Monday, August 11, 2014


Going through my drafts and doing some editing as I go to get stuff scheduled, make sure I really do start posting again. The Chinese quote is something I saw on August 27, 2013, for reference. (That was my 21st birthday, here is what I published that day.)


I saw that as someone's background for their laptop on the train to the airport to orientation for my study abroad program almost a year ago (omg.) I've actually got a tag for things about China/Chinese, and another for things that are in Chinese

Anyways, this was translated as "Different people value success differently." Which is true. It's not exactly how I would translate it- my understanding is that this is about what people think success means more than how they feel about success, but it works. [I am not saying the translation is bad or wrong. The meaning I think the original is saying is one of the meanings the translation can have, it just seems easier to get a different reading from it than the one that I think is intended. Translation is subjective, and it's definitely easier to translate into one's native language than out of it.] I'd have translated it to "Different people have different ideas of what success is."

There's a couple directions I could have been going from there [I wrote down to the end of the last paragraph on the train on August 27, 2013, and I'm writing this on November 5, 2013, so I'm not sure which way I was going to go.]

I could talk about how translating stuff is complicated and interesting. It is. Translation isn't a word for word deal, and I've run into this a few times since. I saw someone say that the social model of disability didn't translate properly into Chinese because one of the sentences that's apparently fundamental to the English version, “Disability is a social issue” or something of the sort, doesn't translate well. The translation I think of, and the one thought of by the person claiming this, is more along the lines of disability being a social problem, or a burden on society. That's kind of the opposite of what we want to say.

残疾是社会问题 is the translation I think they were thinking of, by the way. And honestly... the reading implied by that is one you can get out of the English version too, which is part of why I don't actually use that as my first explaining sentence for the social model.

Also, this is translation! We can be creative! In fact, we should be creative. Telling Chinese people with disabilities which model they should use to look at disability (or even assuming that their views will fit any of the main USA models) is a problem, and I'm not going to do that. But I'm also not going to say an idea can't be translated, especially when it's just not so. 


There. All I had to do was take a different core-ish sentence describing the social model of disability and see if it translated better. The one I went for was “The worst problems Disabled people face don't come from our own impairments, but from society's barriers.” That's a sentence I'm more likely to use introducing the ideas of the social model in English than “Disability is a social issue” anyways.

In the end, translation is... I've been told it's like a dance between the translator and the original author. Let's just say there's a reason that anything of mine that gets translated into a language I speak (English to Chinese is the only example that seems likely, though I suppose that Chinese to English is possible since when I write in Chinese I don't normally do it by writing in English and then translating into Chinese,) I want to be heavily involved in the translation to make sure that the ideas come through properly. I don't mind if the words get messed up a bit, or even if whole sentences get lost, but the ideas need to be the same.

Oh, and that's why I'm slightly mistrustful of the English version of “The Reason I Jump.” The translator and the author almost certainly have extremely different views of autism- one is a parent, and one lives in an autistic mind-body, and I'm aware of how basic worldview differences between translator and author can lead to differences between the translation and the original.

Monday, August 4, 2014

Growing up into an Autistic adult

This is in the Down Wit Dat August 2014 Blog Hop, BTW. The theme is about how disabilities and such are a natural part of life. 

Well, at this point I'm 21, almost 22, so I'm definitely already an adult. I've been working part-time in math education since I was 17, almost 18, and I've done some other kinds of work (research, information technology, physics lab TA.) Also I just read Mel Bagg's What Not Changing Us Means.

When we say we don’t want to change, we’re incorporating all four dimensions in life already. We’re incorporating growth through time into our concept of the thing we don’t want changed. We’re saying “We don’t want to be changed” in the same way that a cat, faced with becoming a dog, would say “I don’t want to be changed.” The cat isn’t denying the important passage from kittenhood to adulthood. The cat is saying I want to grow as a cat, not a dog.
Basically this. (I mean a lot of other things, too, I really do suggest that you read sier post in addition to mine, or even that you read sier post first since a lot of what I'm doing here is responding or building or putting on some of the specifics as it applies to my growing up into an autistic adult, rather than a non-autistic adult.)

But also the responses. A recent New York Times article that I am not going to give the honor of linking because it is terrible (it thinks early intervention leading to a child losing their diagnosis is 1) good, and 2) going to last.)

Basically, it works under the idea that an autistic child growing up into a non-autistic adult is a good thing, which is a social and cultural and otherwise made by non-autistic "experts" assumption about how autistic people should live sort of assumption. It also works under the idea that if you can reach this sort of indistinguishability once, it will last. That's not accurate, BTW. Neurodivergent K talks about that in The tyranny of indistinguishability: performance better than I could, the essential point is that as demands increase the effort needed to emulate them increases and gets even further from autistic needs.

But because autistic development and non-autistic development look different, are moving towards different... slightly closer to stable than in childhood but still always changing adult areas, and because people tend to expect non-autistic development of autistic people rather than admitting cluelessness, there's an idea that we will get less obvious as we grow up when the opposite is more likely to be true.

Back to Mel's words and the cat/dog metaphor for one way that it works:
Quite frequently when they say that they sneak in something about making us into dogs, only they call that part of the growth from kittenhood into adulthood. “Sure, learn about stalking mice and stuff, I’ll give you that, as compromise or something, but hey, wag your tail when you’re happy, not when you’re mad. That’s the right way after all. You can’t deny change. Didn’t I just talk about important skills of the adult dog… er… I mean cat?”
 Don't flap your hands, it's silly/childish. Make eye contact. Use oral speech. Sit still. These are things expected for non-autistic development in the culture of my particular bit of the USA. (Eye contact expectations are hugely variable with culture. Signed languages have a long history, and they have been an acceptable alternative that most people know in quite a few places, for quite a few reasons.)

Because of how widespread those expectations are, I actually did learn to do a lot of that (iffily, badly, actually pretty easy to distinguish from my peers even though I've always, always, even still meet the definition of indistinguishable that Lovaas and co use: placement in a general educational classroom and at least one non-disabled friend, and can we talk about how this definition depends on the person still being a student?)

In growing up into an autistic adult, I've stopped doing some of those things. I've started using the skills that I need for navigating the world as I am, rather than for trying to navigate the world while pretending to be non-autistic. (By Mel's metaphor, I've started switching out "adult dog" skills taught to me as universal "adult" skills for "adult cat" skills that serve my actual needs.)

I carry an AAC device- in my case, either my laptop with eSpeak or my iPad with Proloquo2Text (or just a notepad application when I was in China because I never figured out a Chinese text to speech on the iPad.) I have one of these things and a pen and paper on my person pretty much all the time. A side effect of knowing that I'm covered even if oral speech does give out on me, funnily enough, is that I'm more likely to retain the ability to speak, but that's not actually the purpose of carrying the devices. The reason is that I'm not always able to speak orally, and it's important for me to have a way to be understood even when I can't. My autistic body language, while very communicative for people who understand it, isn't reliable for this because people tend not to understand it. Folks have a tendency not to realize I'm upset or uncomfortable until I've actually melted down, which is too late as far as I'm concerned.

I carry a stim toy, a fidget, whatever you want to call it. It's usually a Tangle, Buckyballs, or a square of satin-bound blanket. Any one of these can take care of my need to be not-still. I've also used knitting and making chain mail for this (the armor kind, not the junk mail kind.) When I'm taking care of my need to be not-still in one of these ways, I'm less likely to pick at my skin, which means my face itches less. That's actually a big enough thing that once I realized the effect was there, it got added to my list of purposes for carrying a stim toy. [As opposed to being more likely to retain speech, which I don't care all that much about.] The original reason was being better able to center myself and also better able to concentrate on whatever I want to concentrate on, which has tended to be school stuff.

I don't dress like most people. I tend to go for either T-shirts and athletic shorts (both out of the mens section) or homemade dresses and skirts. In the case of skirts, the shirt might be homemade too, or it might be a T-shirt. The common factor is comfort- I'm talking about cotton knit dresses, the kind of dress people think of as for kids because adults use more "mature" and not-stretchy fabrics that aren't as comfortable and harder to keep clean. Don't even get me started on stockings. I have refused to wear them for as long as I have been able to enforce this refusal. Actually longer but until I turned 18 I could sometimes be overruled by a parent and that was terrible.

I flap and rock and spin and jump more openly now at 21 than I did at 12. At 12, I was still simultaneously trying to get my weirds read as deliberate and trying to be more typical, more indistinguishable, than is anywhere near sustainable for me to be. At 21, I know that while the "make it look like deliberate weirdness" carries some benefits, it also means people are better able to ask me to change it, which doesn't go well because I really can't. Not sustainably, anyways. I also know that trying to act like a non-autistic adult super-duper not sustainable. That's kind of the reason behind "I really can't" on the changing said weirdnesses.

People tend not to read me as autistic anyways, because autistic... adult? Does not compute. Autistic person with college degree? Does not compute. Autistic person... as the teacher? Computes even less. Autistic person... read as woman? What? That can't be a thing. And yet... here I am. Here we are, I should say, because it's not all that unusual. Fairly sure all those things apply to Neurodivergent K, for one example. Melanie Yeargeau for another. Ibby Grace, too.

But people not attaching the word autistic to the pretty noticeable differences?

1) Doesn't make the differences stop being a thing. I jump, rock, flap, spin, openly stim, etc. I've had at least three broken bones, none of which got diagnosed at the time and one of which was very explicitly a non-diagnosis due to my not acting like I was in enough pain- I went hiking on a broken foot without realizing it was broken. I use language weirdly. I ran a 5k barefoot once. My records are fairly littered with autistic traits that didn't get called that, which means that I had the differences and that they got noticed.

2) Doesn't mean they didn't notice the differences.  R****d was my bullies insult of choice fairly often, and definitely the one they went for when I was jumping and flapping my hands. Crazy and weird were the two "negative" words that anyone had to say about me in high school. One of my college professors commented that I speak in a "unique" way. Chad Stokes (State Radio, Dispatch) still remembers me as the person who ran the 5k barefoot.

3) Definitely doesn't make me somehow not autistic. Seriously, I have no idea how the idea of "If we don't say the word then she doesn't have it" is supposed to work, but something along those lines seems to have been the philosophy that made it take so long for me to get diagnosed. But yeah. In terms of stuff I do in my life, both online and off, I probably do count as that ideal result because I'm in general education classrooms and have friends. The reason I can do those things is that I don't try to act like I'm non-autistic. My classmates and teachers from my year in Tianjin can totally attest to just how obviously autistic I am. So calling "doing stuff as an adult" the same as "not autistic anymore" (in metaphor, calling "adult" the same as "adult dog") makes zero sense. Actually negative sense.

I'm an Autistic adult doing things. Not a magically-not-autistic-anymore adult because I am doing things. Seriously. Should. Not. Be. That. Hard. To. Accept.

Sunday, August 3, 2014

One Reading Suggestion

I don't know how many of you actually read through that whole list of things I either cited or made notecards for about the erasure of queer autistic people, and that was so long ago that you probably wouldn't remember if you had... but there is one person where I cited seven of her articles. Those were part of a series called Double Rainbow, and I really, really suggest reading the series. For once, I'd even say read the comments- most of the commenters are Autistic people who get it, so far as I can tell. There are some exceptions, one of whom I cited as contributing to the erasure of Queer Autistic people, but mostly it was good.

Anyways. Heads up for a quote from that bad comment, because I'm handing over the notecard I got out of it.
Java Junkie claims that “Your critique of this fact makes me wonder if you realized you were reading a book about autism instead of gender identity.” despite the blog series being specifically devoted to the intersection of autism, gender, and sexuality, and argues that “Sexual identity is much to complex of an issue (ESPECIALLY for autistics) to address it more in depth than they did in a book that's meant as a general overview.” In doing so, she says that Queer Autistic people are too complex to address.
The fact in question is that parent guides were really bad on the subject of gender. They told parents to make their daughters do gender normative stuff. [Shaving legs and pits for girls was on this list.] Which, I understand that this is socially expected, and I can totally understand explaining to folks that it is (now try to explain why it's expected, good luck coming up with anything other than sexist nonsense because you can't.) What's not OK is making someone do it. We have the same right to knowingly go against norms everyone else does, even if/when a little extra checking in to make sure it's knowingly sounds like a good idea.

It's not that much more complex to say "Make sure kid understands what's expected and that if they don't do it some folks will use that as an excuse to be terrible, then let them chose." It's especially not that much more complex once you get into the question of "How would I make kid do the thing, anyways?" We think it's more complex because there's assumptions that "Tell kid what to do" and "Do socially expected things" are simpler, in this case the socially expected things being gender conformity, but... it's really not? The perceived simplicity is artificial, since attempting to keep up with gender norms is actually really complicated.

Anyways, assuming that "wants to write about a thing" leads to "actually writes about a thing" (meh, see the month long absence when I tried to convince myself the next thing I would write about would really be Li Jinsheng,) I will eventually talk about some other sources I cited in my paper that I think are good to read. Also, the paper is now a chapter in Criptiques.