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

Saturday, May 31, 2014

Thinking in Patterns

Got the brain-seed to write this from Autistic Thinking, a new tumblr that I think is important.

No, I don't think all autistic people think in patterns. I'm writing, tonight, specifically about the way that I think.
Not what I think. How I think.

I think in patterns. It's usually through language of some sort (yes I consider mathematics to have a language, flavored by but not the same as whatever language is being used to define and describe it, no I can't describe it better than that because every description that's intelligible to anyone besides me would be communicated in one of the languages used to define and describe it.) It's not always through a language, just usually.

Sometimes it's through visual stuff, but this requires the visual stuff be physically in front of me. I can sort of manipulate an image in my head, at least along certain patterns (rotations, reflections, translations, stretching and shrinking, often moving parts.) But I can't create a mental-only visual representation, generally. (So I don't have pictures in my head.) So I can create cool geometric pattern-based art, as long as I'm actually creating it on paper or on a computer screen or drawing lines in the sand or any other medium where I get an image in front of me, and I can say if something looks right/not right in terms of matching a prior pattern, but I can't pull up the image of the prior pattern and I can't create a design in my head to draw later. In terms of the rotations, reflections, stretching and shrinking this means I am calculating where each piece goes after the transformation and then drawing it, but unless I actually draw it or match it to an already drawn one someone offered as a choice, I don't have a picture in my head.

The visual version of my pattern thinking is probably responsible for my pile of four-, five-, and six-leaf clovers. I see the patterns in how three-leaf clovers are, and then I see breaks in the pattern, and oh hey that's probably a clover with extra leaves.

Sometimes it's through pitches and timing, like with music. I can't recreate everything playing my head, not by a long shot, but if you could? A lot of times, I have essentially an audio recording of something in my head [only if I remember at all, which is really iffy. I have good pattern recognition thanks to my thinking in/through patterns, but this does not mean good, consciously accessible memory.] This relates to me and music, but it also relates to me and language.

And now that's language. That's where a lot of my thinking happens, though switching languages mid-thought is totally a thing. (Like even when I'm using English I kind of want to call things 委婉 (wei wan), which is a lot like subtle/indirect. I'm generally complaining when I want to call things 委婉, by the way.) My language is very pattern-based. If I'm writing a sentence that I've heard a friend say before, I'm very likely to be "hearing" that recording in my head as I write it. When I'm writing a story or a poem or an essay, I pull out sentence patterns and idea patterns that I've seen before. Not like the five-paragraph essay sort of pattern, that's one that my mind never seemed to get along with that well though I did know how to do it, but in terms of "these ideas fit together well" or "this word/sort of sentence goes well with that word/sort of sentence" or "this phrase and this idea work nicely."

Sometimes that turns into echolalia, and sometimes it's an echolalic style or echolalic language use without really being what most people mean behavior-wise by echolalia. (It's never what therapists mean, interpretation-wise. Never. Even when I am repeating the last word of a sentence or the subject of a sentence, it has meaning, and includes my having understood what was said.) Because sometimes it's a pattern of "I know how this kind of sentence works on that idea, and now I'm going to substitute my own idea in, with words to match." That's how I got the title for this post. That's how some of my poetry happens too. [Beware the choice! Beware refusing it!/You beware my choice. You should beware refusing it.] The first comes from Young Wizards, which is a series I love. The second? Those are my words. And the contexts, the meanings? I think they're different in pretty significant ways, but the word patterns are similar.

And then there's the actual repeating of words, shortly after the other person says them. If a person asks me, "Do you want X?" or "Do you X?" or one of many variations on that sort of question, it's not really a yes or no question for me. It's an X or no question for me. [Yes I call them X or no questions in my own head, pulling from one of the ways people talk about math, where X is a variable.] In terms of repeating the nouns from sentences in general, ones that aren't questions, it's more like how other people will say "yeah" or "uh-huh" or nod to show that they're listening. I'll noun.

Because I think in patterns like this, I tend to... think in patterns. Less so examples. I often need to be reminded to include those. [I just remembered that I should probably give an example of an X or no question, not just the models of how those questions are built.]  Sometimes I get asked if I want ice cream. I often answer  "冰淇淋!" (bingqilin) or "巧克力冰淇淋!" (qiaokeli bingqilin.) Those are "ice cream!" and "chocolate ice cream!" in Mandarin Chinese, respectively, though I'm leaving out tone marks here just like I did with 委婉 (wei wan) because I don't actually know how to type those. And also in terms of the examples thing: I will often have the pattern in parts of my memory that I can call up at will, but the examples can only be called up by very specific things, which usually aren't "being asked." Something that fits in the same pattern might call the memory up for me, even if I didn't know I remembered it, though.

The patterns get to be an issue in social situations, sometimes. Because I work in patterns, I tend to follow said patterns. Breaking a pattern takes effort. If I'm low on energy, I might not be able to, but that's also when I likely need to break script and push my own needs. This means learning new patterns is important, but that also takes energy. It's an interesting cycle, and I think I'm making progress. 

Friday, May 23, 2014

For Children to Know

Sometimes surveys happen. Sometimes I snark at them (they totally deserved it, asking a question that assumes I think the concept of differently abled should be taught at all and wanting to know how/where, when actually I think the concept hides important institutionalized power differentials and is therefore kind of terrible.)

But I played it straight, pretty much, on a couple of the questions. Like "What would you want children to know when it comes to the concept of disability?"
  • Disability is a natural part of the human experience- that's in the ADA, we can be at least as progressive as the US Congress in the 1990s.
  • We're all different, when the stuff a person can do is far away from what society expects them to be able to do that's called disability, because society is disabling them.
  • Disability without a disabled person doesn't actually exist. 
I could explain these things and talk about them more, but...
Those are the starting points I would give to the kid, then let the kids questions guide where we go. I'm happy to do the same now, if people come to ask.

Wednesday, May 14, 2014

Fiction and Injuries

Warnings: Significant discussions of injuries including animal attacks and broken bones, healing process. Also, brief mention of menstruation.

I write fiction sometimes. A lot of people do. Unrealistic injuries and reactions to them are really common (often authors neglect the fact that while a character may be able to adrenaline/stubborn their way through injuries at the time of the injury, there is also time spent healing and recovering lost strength, itching/aching scars are things, stuff like that.)
People deciding reactions I've actually had to my injuries are unrealistic are also common. Sometimes causing me to have my recovery path be that of "no treatment," including for a broken foot.

So here's some stuff I'm going to point out, coming from major injuries I've had.

1) If you get a concussion, the worst effects might not be the right-away effects. They weren't for any of the times I got concussions, actually. Right away effects were mostly along the lines of "ow that hurt," but later on? Especially a few days later? Nasty headache, and I had difficulty concentrating. Dizzyness can happen for a while too.

2) Broken bones: It is absolutely possible to break bones and not know right away, so long as everything still takes weight and moves approximately the way you tell it to (or about as close to that as it did before.) This also assumes that there's not bone sticking out visibly or something.
Even in these cases, healing will take just as long as it normally does. Eventually, you're going to figure out that it was broken.

a) Broken nose? Headaches, oh my goodness the headaches are terrible, and it can last a few months. Also, I didn't get a nose bleed the time I broke my nose so that is possible. If someone is a doctor/healer/nurse type, they will recognize a broken nose should they see it, and will probably comment, but there may or may not be anything that they can do. Sometimes they can make sure the bones are lined up properly, sometimes doing so would require re-breaking the nose.

b) Broken tailbone? Sitting is going to be very unfun for a while. Horseback riding is for no. If your character menstruates, there will be a bigger blood splat from whatever impact broke the tailbone (soooo many things make bigger blood splats during menstruation it is obnoxious.)

c) Broken leg? The type of fracture matters. Someone with a focal fracture may or may not realize they have a broken leg until it still hurts much later than it should for a bruise or even when they realize months later that "oh wait my leg bone has a dent in it." I might be speaking from experience. [I am. There is a dent in my right shin from a focal fracture that happened about five years ago.] If it's a focal fracture, your character can probably walk and run, but their leg hurts and will for a while.
If it's not a focal fracture, your character still might be able to stand, depending on if it's broken all the way through or not (there's levels of how broken legs can be) and if they have anything they can use as a crutch, but they shouldn't choose to unless it is truly dire. Healing crooked may be a worry if they can't get at treatment, and unless magic is in play the broken leg will be an issue for months.

d) Broken foot? This is one of the ones where my actual reaction gets called unrealistic, because I could (and did) stand, walk, hike, run, etc on my broken foot. It was not a good idea, but because my pain threshold and tolerance are both ridiculous, I didn't realize it was broken for a while.
That said, I did eventually figure it out, and healing took a long time. I got the injury near the end of July of one year. An MRI happened near the end of August and the location of the break was pretty visible. I was told it couldn't be a break because "to look like that a break would have to be a month old," with the doctor knowing the injury was a month old. No, it doesn't make sense to me either. I think "walked on a broken foot for a month" was too much for the doctor to handle.
I couldn't physically get my foot into my sneakers until late October. That's how swollen it was. (I'd worn approximately hiking sandals all summer and into the school year, it wasn't until I attempted my cleats for Ultimate that I realized I couldn't get my feet into those and tried (and failed) sneakers. Cleats took until January or so.

3) Attacked by a wild pig/boar? Well, mine was theoretically domesticated, but at 800lb it's fairly close. So a few points: Your character is lucky to be alive. They should be aware of this. If they were bitten, they are at risk of infection (this goes for getting bitten by smaller animals as well.) If they were bitten, even with treatment this is going to take time to heal, and depending on where they were bitten, this will put different sorts of hitches in their plans. Remember that wild pigs/boar are big, and this is likely to be a crushing injury (or a body parts missing injury.)
For me (rammed in the rear, then bitten on inner thigh,) I limped significantly for about a month. I took several more months before I could run/walk the same distances I used to walk/run. The doctor told me to expect to miss several weeks of school due to inability to walk (they didn't count on stubbornness+ridiculous pain tolerance, and I mean ridiculous. If your character has not trained themselves to ignore large amounts of pain and does not have sensory processing issues, your character can not do what I did.)
Five and a half years later (this happened in the same school year as the shin fracture but not the same calendar year) there is still a scar, and it still sometimes itches. The bitten thigh remains slightly thicker than the uninjured thigh. Despite the fact that I am right hand/foot dominant, my left leg remains slightly stronger and more flexible than my right.

So remember: injuries have long-term effects. Even if your character is able to ignore/push through major injuries at the time (and there should be a reason that they can, if they can, as well as a very good reason for them to choose to should they be aware of the extent of their injuries,) they will still have to spend a good long time healing. Some injuries will have permanent effects.
Even if you aren't registering the pain consciously (or can't feel the pain for whatever reason, like if someone is paralyzed from the waist down and then has an injury on their leg) pain still affects the body.

Friday, May 9, 2014

Blogging the IMFAR Program

Jason of Drive Mom Crazy (who does an Autistic Artistic Carnival every Autistic Pride Day that you should totally check out, by the way,) asked me about IMFAR and what I would want to tell them. Since I'm a neurodiversity advocate with at least some sciency background (mathematics and mechanical engineering majors plus some nanotechnology research) my initial reaction is to start looking at their program and some abstracts and respond to what's being said in those, see what reactions I come up with.

So: The first thing I notice is that the meeting is at a Marriott Marquis, meaning it's expensive. As far as actual Autistic people being able to go, that's a bad sign, so count one against them for failing "Nothing About Us, Without Us."

Then I see the sponsors page. One of the Platinum Sponsors is Autism Speaks. They're terrible. Their status as a platinum sponsor worries me, but I kind of expected it. It means I'm expecting a lot of bad stuff in the programs, as well. Most of the other sponsors I don't recognize, but Autism Science Foundation, one of the gold sponsors, was founded by someone who talked about wanting to kill herself and her autistic daughter on video for Autism Speaks before she cut ties with them, so I don't trust them at all either. Sponsors that I recognize: Only 2, but they're not a good 2.

Now on the "Scientific Program," they're talking about autism "across adult the lifespan" as something where research is new, which, I mean, yes, I'm glad that people are recognizing that autistic adults exist but why is this research new? "Early mechanisms in the unfolding" of autism is maybe an interesting thing to look at, but the way they're talking makes it sound like it's going to be them talking about where we autistic people go “wrong" and that's not cool. How autistic brains work differently? Yes cool. How autistic brains are dysfunctional? Kind of a biased assumption there, and not the bias I like. (Science is political when it includes basic assumptions that are political. So anytime we're looking at humans, it's going to be political. Let's not let the dominant messages pretend to be apolitical, K?)

Special Interest Groups are meeting on the 16th and 17th, there's only two times so you can't go heckle all of them. (Am I terrible for thinking in terms of heckling?) Anyways, from just the titles because I'm not seeing more than that right now:

  • I'm not sure what Risk Assessment, Management and ASD is actually about. Is it assessing the chances that a person will be autistic and somehow managing it? Is it assessing the risks involved in different ways that people react to autism ("manage" autism)? The second one would be interesting if people were looking at the risks of stuff like "ABA teaches people not to say no," but I don't think that's what it's about. (I think it's what it should be about.)
  • Approaching adulthood is an important thing that people tend to ignore because people tend to ignore the existence of autistic adults and pretend that's not going to happen. I'm not convinced they're doing it in a non-terrible way that involves going from one place where autonomy is ignored to another place where autonomy is ignored, but the vocational/jobs stuff has the potential to be cool and services for adults are important. This one really depends on the views of the people running it, so it's probably terrible.
  • Technology and autism has two things I could understand it being about. One is awesome. The other is terrible. I am worried.
    The awesome one is looking into how technology is useful for autistic people. It can be done badly, like when people decide "convenient for folks around autistic people" is more important than "useful for autistic people ourselves," but as long as people get that bit right (I don't trust IMFAR to do this) it's awesome.
    The terrible one is people thinking that technology would somehow make people autistic and looking into that. Um, ick. Especially since that would lead to depriving autistic people of technology in an attempt to "recover” us from autism. Depriving people of assistive technology as a way of making us more functional is backwards and going to backfire.
    I'd go to this meeting I think.
  • Global Knowledge Translation for early identification and intervention is probably code for Western (especially USA) people telling everyone how to do it, which is terrible. 
  • Autism Social, Legal, and Ethical Research has the ability to be good, but when done from a place of seeing autism as deficits only is going to be terrible. So ick.
  • Minimally Verbal Individuals sounds euphemismy. Could do good stuff like AAC and sign and such, but probably trying to make people speak more and that's adding stress so probably not actually good.
  • Sensory Motor is absolutely a thing. I'd be interested in seeing what the differences are in sensory processing and in movement and if we could do this info without pathologizing ways of moving/processing more common in autistic people that'd be awesome. But it's probably going to be about trying to make us move and at least pretend to be processing like NTs do, sads. I'd totally go heckle them and try to get them in the right direction though.

Monday, May 5, 2014

Do not pass go; do not collect $200.

I am sad, and I am disgusted, and I wish I could say I was surprised but I'm not and the fact that this isn't surprising but rather pretty much status quo makes it all the worse.
Someone made a comment about autism that I'm not actually going to quote here, because I make a conscious decision not to swear here, hoping that keeps me from getting filtered and blocked from some folks who might need to hear an Autistic adult telling that the way they are is OK. (Yes it is terrible that I need to weigh that sort of choice, but given the world we live in it's reality, and I have enough control over my written language that I can find alternatives. Choosing not to is just as acceptable, this is my choice.)

And once I knew about the statement, I couldn't just leave it there unanswered. (Or even just unanswered by me, plenty of other actual neurodiversity people were showing up to explain what was wrong with the statement.)

Because no, calling autism terrible is not in line with neurodiversity. Thinking society is terrible a lot of the time? Yeah, that can work. Even calling autism terrible some of the time, at the worst of times, is not in line with neurodiversity. It's just not. And no one ever said parenting, was all sunshine and rainbows. No one ever said autism was all sunshine and rainbows. No one ever said any neurology was all sunshine and rainbows. Everyone gets frustrated sometimes. Neurodiversity doesn't mean never being frustrated. It means knowing where the blame lies, those times when ableism is to blame.

And that bit about where if you never thought autism was terrible you aren't human? There are definitely autistic people who've never thought their own autism was terrible, there are definitely autistic people who think that calling our neurology terrible amounts to calling us terrible, I know I'm not the only one in either of those categories. So there's going to be Autistic people who that's calling not-actually-human. Changeling myths of old and modern rhetoric calling us not-really-people are both things, adding to that, even unintentionally, is really, really bad. Like, contributes to us getting murdered level of bad, because if we're not really people it doesn't matter. So um that's a problem.

And of course, hating the entire way a person's brain is put together? Not neurodiversity. Kind of the opposite, really.

Thursday, May 1, 2014

BADD: Not what I was planning on but it's ableism and I'm against it

Warning for ableism in school/educational settings.

This is my post for Blogging Against Disablism Day. It's not the post I was planning on writing but then I melted down over this so it's what we're getting. If I'm lucky, I'll manage one on my planned topic thanks to time zone differences.

I don't phone. My program people know that I have issues with phones, but don't seem to get the full extent of the issues: I am pretty much limited to scripts and noncommittal sounds on the phone, because I am not processing phone conversations in real time much of ever. So if they're calling to say "I said I'd call you when I got here and here I am" I'll be fine: I go meet them. If they're calling to say "Yo, you forgot your book in my office," I'll be fine: I know that script, I say thanks and ask when I can get the book. I might need to supply some information that I already know, but I don't need to figure out what script to put it in or create one from scratch.

But if it's communication for a job and I need to be able to react to new and potentially unexpected information with actual solutions and real-time reactions? I've got to be text based. That's just how it is. Email is good. Text messages are manageable, though kind of annoying for long things because of the keyboard and screen size and not really practical for job communications thanks to that.

My program people have been good about many of my issues, but not all. Mostly it's been cognitive stuff that they've been bad at: Newsflash, a person can be cognitively disabled and still meet the ADA "otherwise qualified" thing when the stuff that cognitively doesn't work isn't the core duties of the job/the core expectations of the academic program. And still need accommodation for those things.

So: This paperwork is not cognitively accessible to me, I need the questions in a different, less open-ended form or to not be the one doing this paperwork.
They wouldn't believe me until they actually saw me melt down related to it. Twice. Once at orientation, and yes I told them what the problems were then [the questions aren't accessible to me and also your person talking about cross-cultural communication is using the same words that the people telling autistic people how we interact wrong in all the ways use.] Once after I told them and their suggestion was to have the residence director help me with it, ending with my melting down in her office.

So: I need significant support writing a cover letter for a job. Basically it means the person helping me asks a ton of questions and I answer them and then edit into niceness, I actually posted the progress on We Are Like Your Child after a friend helped me in English.
The friend helping in English happened because my program people didn't provide the help needed. Residence and Academic directors totally talked to each other about how my issue was "worrying" but they didn't tell me what they were worried about and they didn't give me the help that would have led to there not being an issue.

So: I don't phone. They've been told multiple times that I don't phone.
Academic director calls me on the phone to tell me that my internship teacher isn't using email for a reason I don't understand. But one of the big things is that people often don't understand the reasons behind very real needs so I'm not going to argue. It's something about computers not being good right now. Fine. Since I'm getting this information second-hand from someone with no such issue, how about telling me this in a mode of communication I'm OK with? But no, this is apparently too much to ask, for people who don't have issues emailing to remember that calling me should only happen for things that are both urgent and important. At the start of a break over which I am not working, this is not urgent.
Also the teacher-given suggestion is not practical: texting for all job-related (sciency!) communication is not practical. Small screens, small keyboards, not good for reasons that I don't think even have anything to do with my being Autistic.

Yes, these are individual incidents faced by one person, but there is a pattern: I am disabled. I have a need related to my cognitive/thinking/processing stuff. It's not believed without huge piles of proof often involving meltdowns, and even with the proof the offered solutions are often impractical. These needs are special and it's expected that people won't understand them. I should be grateful that I'm here at all, really, my program had to bring up the fact that they could get sued if the university rejected me over disability after the program accepted me to get me here.

That's saying that these needs, which are considered part of a disability instead of "sometimes people have things they can't do," are special and I should expect them to get ignored or forgotten. That's ableism. It's part of a pattern of how differences in how people can think and process get us excluded, you know, ableism. That thing we're against today?