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, June 30, 2016

Why don't you just make your own? WE'RE TRYING!

All too often, when people talk or write about representation in fiction, the responses we get are somewhere in the area of, "So write your own stories." We do! Getting them published and disseminated is the hard part, because mainstream publishers (and film companies, etc) in the USA and probably a good chunk of Europe too are of the opinion that the default person we can all relate to is the cisgender straight white vaguely Christian abled man. Any deviations from this supposed everyman occupy the difference slot. (You mean you have/are that too? Yes, that too.)

So we wind up crowdfunding our anthologies, or self-publishing, or making our own publishing companies, or one of any number of things, if we get our stories out at all. Autonomous Press exists. I have stories on Amazon. Kickstarter and Indiegogo often have crowdfunding going on for anthologies by and for marginalized folks. I'm actually thinking of, and supporting, one in particular as I write this post: Hidden Youth: Speculative Stories of Marginalized Youth has a Kickstarter active at the moment, with about a week left. I would love to see more people supporting it because I want to read the book. (I pledged for copies of both books, since this is the second in a series.)

I would also love to reach the point where stories about disabled people, people of color, queer people, women, and especially people who are more than one of the above are not shunted to the side with "write your own!" followed by "those stories don't sell," where we get these anthologies without needing to make Kickstarters and Indiegogos and found our own companies just to see ourselves in fiction. (I love the idea and reality of us having our own media companies and collectives. I do not love the idea that us having our own media companies and collectives is the only way we can get representation.)

But right now, crowdfunding is where we seem to be at. (Also Star Wars, since the leads for The Force Awakens are a white woman and a black man, and it grossed great. There isn't actually evidence for the idea that stories about anyone besides the supposed everyman don't sell. It's just a convenient lie for folks who are used to being represented and don't get why we're all up in arms about not getting stories where we're the heroes.) So if you want to get to read and watch these stories, please, do support them when you come across them and can do so. Hidden Youth: Speculative Stories of Marginalized Youth has about a week left on its Kickstarter and I want those books

Wednesday, June 29, 2016

(Formal) Accommodations

For the first time in my life, I have formally turned an accommodations letter from Disability Services in to a professor. My accommodations are done "correctly," with proper paperwork from the abled people who make it their business to document those things.

Despite all my opinions on the abled bureaucracy gatekeeping access for disabled people (where are your handlers, where are our papers?) I thought I would feel safer, more secure, with that bureaucracy at my back. The person in charge of disability services likes me. A lot of people at this university do. I thought I would feel safer in knowing there was someone besides me who would at least theoretically defend my accommodations, even if getting it to happen in practice didn't seem likely. (More likely for me than for most-- see also: the person in charge of disability services likes me.)

I was wrong. I don't feel safer.

I don't mean in comparison to how safe I felt in the math department, where I didn't turn in my letter because everyone know and trust me. Besides, everyone got that my accommodation would be totally useless to someone who didn't need it anyways. When speech is usable at conversation-typical speeds, the right to use AAC, either writing or typing, instead of speaking is not going to provide an advantage. Very few people write or type faster than they speak. Regardless, the bigger portion was that the professors know me. They trust me to 1) be able to learn the material and demonstrate in the written homework and exams that I understand it, and 2) know what I do and don't need. So they never asked for my letter.

I mean in comparison to how safe I felt in class 1) not having disclosed at all, 2) having said I'm autistic but not mentioned any accommodations, and 3) after having had the conversation about accommodations but before forwarding the Disability Services letter about said accommodations. How safe I felt increased as I progressed through those steps, and then dropped as soon as I sent the letter in.

You see, I'm taking a statistics class this summer. I'd never met the professor before the first day of class. She's nice, she's friendly, and she even pointed out that accommodations are a thing when going through the syllabus, which most professors don't do. (They have to have a disability statement on they syllabus, and that statement is generally pretty boilerplate, copied from other professors or semesters. They don't need to announce it in class while going over the syllabus and usually don't.)

I talked to her during a break during class. I let her know what my accommodation is (typing/text-to-speech or writing) and she was cool. She suggested that in addition to the in-class solutions I already had, I should always feel free to email with questions after class. I'm pretty darn sure her reaction to my disclosure is not the reason that going through the "proper" accommodation process with my paperwork leaves me feeling less safe than not doing so.

So what is it? Anyone else have this experience? I'd love to have more idea of why I'm feeling this way.

Wednesday, June 22, 2016

Plans and Routines

There's an idea that autistic people depend heavily on routines and/or plans. Sometimes it's even true. I like routines because the less I need to think about my schedule, the better, but I also like to know what's coming. The easiest way I've found to meet both of those desires is to just do approximately the same thing each day or each week.

There's a few bits of nuance I'd like to point out though. The first is that plans and routines are different things. You can have (or break) one without the other, which tends to be how I figure out that two things 1) are different and 2) don't have one as a subset of the other.

Example of breaking a routine because of a plan:
Normally, I eat my meals at the International Engineering Program House. (It's my meal plan.) This Thursday, I am not going to eat lunch or dinner there, which is a break in my routine, because I'm going to Crossingscon! (that's a plan.)

Example of going back to a routine because of a broken plan:
Last semester, I normally went to a club meeting at 6pm on Tuesdays. I thought I had to meet with a student one Tuesday at 6pm, so I wasn't going to go to the club meeting (that's a plan.) When the student cancelled (broken plan), I went to the club meeting (back to routine, but not what was planned.)

One of these I'm completely fine with, and it's not the one where I'm following a routine. It's the one where I'm following a plan: I know what's going to happen, not (just) what's happened in the past. The other? I had trouble both during and after the club meeting even though a focus on routine might lead you to believe I'd be fine.

And yes, plans and routines can relate: if I have a routine, the idea that I'm going to continue having that routine becomes a plan, either implicitly or explicitly. (At least for a certain duration. I know full well that routines change from one semester to another. Classes change and club meeting times change, and that's not an issue because I know what classes I'm taking, when I'm taking them, and where they meet. I've got a plan.)

It's also possible to break both at once, and then I'm really in trouble: When I was studying in Tianjin, my class took a trip to Jingdezhen. I knew that was coming, so that was a (planned) change in routine but not a change in plans. When we got back, however, I had to switch from the travel routine back to the classes routine (change in routine) and they changed our tutors without warning (change in plans.) They also changed our groups for the small group classes and which teacher had the big group class vs. the small group classes, again without warning. That was a bad week, which ended with my melting down in class.

I mostly like routine because when I have a routine, I don't need to think as much about what I'm doing next. It's nice, but not having one is OK, and having it change (with enough time to plan) is fine too. I mostly like plans because I like knowing what's coming. I'd generally rather have one, but I'd much prefer not having one at all to having one changed at the last minute. I can cope with not having a plan. I don't do well at all with having plans changed with little to no warning. The worst thing is a last minute change in plans that is also a break in routine, even though the broken routine wouldn't have been an issue if I'd known it was coming. 

Tuesday, June 21, 2016

Alyssa Reads Uniquely Human: Wrap-Up

I read Uniquely Human, and I went through it chapter by chapter, plus all that material that's not in a chapter. At the end of it all, here are my thoughts:

  • This book is still pathology paradigm/behaviorist model. It's just considering that there is, in fact, some rhyme or reason to the behavior and focusing on the cause of the behavior as a way to reduce it. (Same bad model, just using it to say better things.)
    • The descriptions of how and why we act are definitely behaviorizing, or at best partially behaviorizing. See Disability in Kidlit here for the explanation of what I mean by that.
  • For calling autistic people experts, he really doesn't pull much that's credited as being learned from "an autistic adult said this."
    • What crediting of autistic adults happens leans very white, cisgender, heterosexual, educated, and middle to upper class.
    • Even the chapter called "The Real Experts" has very little content that is what we say or how we say it. Most of it is anecdotes in which he shows our behavior.
  • He occasionally conflates tantrums and meltdowns. There is, in fact, a difference.
  • Dr. Prizant is far more trusting of therapies and professionals in general/by default than I can trust or endorse. He may have shared a parents quote about not being able to trust professionals as far as you can throw them, but his writing indicates that he himself does trust professionals.
  • I do not even vaguely trust the reader (or really trust Dr. Prizant) on what the "successes" we celebrate are. The goals described read too much like "acting less autistic" (but by reducing anxiety!) in ways that conflate "acting autistic" with "showing distress in autistic-typical ways."
  • This book minimizes some major problems: electric shock and other painful punishments are depicted as a thing of the past, Lovaas as one of the first autism experts (never mind that he's one of the people who used shock,) and similar.
  • There are times where a trait he mentions is relevant and makes a "lack of social X" argument redundant or unneeded, but he makes the "lack of social X" argument anyways.
    • One case here is a students refusal to complete an assignment that he can't make sense of being explained with not understanding that he should make an attempt anyways to please the teacher, rather than "Ok but this is so inaccessible that there is no attempt I can make."
    • Also there's the bit where we have a communication disability, and we're pretty explicitly taught not to express discomfort or displeasure, but apparently our not communicating when things are bothering us is because we lack this social instinct?
  • There is an overarching pattern where Dr. Prizant comes up with a good point but doesn't follow his own logic fully.
    • He writes his dissertation on functions of echolalia (and does research on functions of scripting,) finding that they have all the same functions as spontaneous language, but then aims to reduce scripted speech. His SCERTS model privileges "spontaneous" speech over echolalic and scripted speech.
    • He points out some issues with intervention "for autism" in the introduction but still supports plenty of things that are "for autism" later.
    • He points out that "unpredictable behavior" usually means that the person describing or observing us doesn't understand the pattern, but still describes things as unpredictable.
    • He points out that we might find different things challenging than neurotypical children. He misses that running out of gas faster under higher stress doesn't imply a lower threshold or a smaller tank.
    • He argues against portraying autism as a checklist of behaviors, but then tends to start anecdotes about children by... listing behaviors.
    • He talks about trauma but also says that our trauma and flashbacks are not PTSD for reasons that he never explains. (If it walks, talks, and quacks like PTSD... it's probably PTSD.)
    • He points out that there are good days and bad days, that abilities aren't static. He still treats selective mutism as if it's definitely not a "can't" talk in the anecdotes where it is mentioned, because the person can talk. I can generally speak, but when I stop it's because I can't flipping talk. Though to be fair, if I were to have a conversation with this guy I'd probably type for reasons other than "can't speak."
At the end of it all, there aren't too many people I'd suggest the book for. I wouldn't give it to a parent whose kid was recently diagnosed and who hadn't learned to be all behaviorist yet. I wouldn't give it to someone who knew nothing about autism and knew it. I wouldn't give it to an autistic person, OMG NO WHY.

I would, however, consider suggesting it to an educator or professional (or maybe parent) who had already learned to view autism as a checklist of behaviors and deficits, and who I didn't think was going to stop doing that any time soon. Maybe. Still iffy because of essentially the difference between 1984 and Brave New World: Yes, only one of these is torturing people to control them, the other is quite a bit more subtle in its control and using what people like (along with many other signs of dystopia), but these are both dystopias. One gets into a wrestling match to force eye contact while the other holds a desired toy between the eyes to induce it. Both are pushing for a neurotypical performance at the end of the day. The first is obvious in its abuse, while the second... it's not as immediately and obviously traumatizing but that could make it harder for people to realize the problems and can lead to trauma that others won't believe even was trauma. Both are still dystopias.

Dr. Prizant is teaching people to make a nicer-seeming dystopia and call it accepting autism. It's not neurodiversity, and it's not accepting autism. It is sometimes doing things that make us more comfortable and less anxious, but with the idea that this will make us appear less autistic because autism gets conflated with autistic ways of showing distress.

For folks who'd like to go back and read my more specific thoughts, here's the rest of the series. Note that the part number within my reading is always 1 more than the chapter number because I started with everything not in a chapter.

Monday, June 20, 2016

Alyssa Reads Uniquely Human: Part 13

Final Chapter! This one's called "The Big Questions" and I am so glad to be done with this. Ok, so I may or may not make a sort of wrap-up post, but I am done reading this book. Uniquely Human might be better than most of the stuff out there but I do not make proper endorsements based on "maybe not as bad as this other really bad stuff." At most, I make "under this circumstance I may be willing to work with" and "under this circumstance I could suggest with caveats."

The most recent post of the series is here, and I begin here.

He points out some issues with the idea of "low functioning" and "high functioning." I actually like how he does this, and I've made some similar rhetorical moves in my own criticism of functioning labels. Cool!

I also like how he points out that there is not some window of opportunity that closes at a specific age. (Autistic development: it's a thing!) However, still a focus on early intervention. A nod is made to choosing therapies that "fit" (fit the family, that is), but still early intervention is... not something I can endorse an endorsement of.

I can't endorse the idea of parents choosing to disclose to neighbors that a child is autistic, especially not at the same time that giving the kid the a-word (autism) is an if/when deal. (Tell the kid! Give the kid the words they need to talk about their experiences! Sooner rather than later! Not being able to explain in words that we've noticed we're different is kind of expected if you haven't given us the words to explain it!) Glad he pointed out that we're generally (in all cases he knows of) finding the knowledge neutral to positive, no matter what we might think of being autistic we're cool with finding out that we are.

Re: Stimming:
Often the parents concern is that such behavior attracts glares or makes others avoid the child. In that case it's sometimes best to help the child learn other ways to self-regulate that doesn't draw negative attention or to encourage the child to find a time to self-stimulate that is less problematic. (230)
It's not that he's wrong here, per se, just... insufficient. It's useful to give the kid that information. But if the kid is inclined to react with "too bad for them" and stim on, you darn well better accept that and cope.

I get why he's avoiding the terms "stim" and "stimming" but as a moderator for fyeahstimming, I go the opposite direction: reclaim (and respect) the stim.

I am still way the heck more cautious and mistrusting of therapy than this guy is.

Yay pointing out that AAC doesn't get in the way of speech development and actually supports it. Since we're supposed to be about different views, I'm going to add in: Why is the scary thing that a person is so satisfied with their other communication systems that they don't bother with speech? No, really. Why is that the scary thing? We're essentially being scared that someone is going to have too much success communicating via boards or tablets or pictures to care about speech.

This chapter was largely a FAQ section, and I'd call it a mixed bag: some very important things got pointed out, that I really wish had been mentioned more in the other chapters. However, he's still leaning towards "social thinking" (neuronormatively social thinking) and changing behaviors that don't hurt anyone because "others" (neurotypical others) might not understand them, plus there's the whole thing where he's too trusting of therapy and intervention. He does ask people to pay attention to the goals and to stress levels, but there isn't nearly enough questioning of the intensive and early intervention model that's "successful" on a scale where loss of diagnosis is considered optimal for a book that's supposed to be about questioning how we see autism and says it has issues with the concept/prioritization of recovery.

I wrap up the series here.