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

APA: Zisk, A. H. (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.

Friday, June 17, 2016

Alyssa Reads Uniquely Human: Part 12

Still reading Uniquely Human. The most recent post in the series is here, and I start here.

I'm glad Dr. Prizant points out that there isn't some single professional or plan or anything that will have all the answers, that there isn't something out there that will magically make an autistic person "normal." Also the nod to questioning the disirability of "recovery" from autism is nice. (I litearally wrote a piece for publication about throwing myself repeatedly into a wall hard enough to shake the stage as an act of protest against that sort of optimal outcome nonsense. That's not out yet, but I blogged a questioning of optimal outcomes too.)

I'm also super glad he's pointing out that lots of adults really resent the idea/emphasis on recovery, though I will point out that this is one of the times where "with autism" is really not cool. The adults who are "viewing autism as an inseparable, integral part of who [we] are" (210) 1) tend to be the same ones who at least accept being called autistic and 2) overlap really heavily with the ones who go "Uh, no, I do not have autism." This is the place to at least move to "on the spectrum" as middle-euphemism if you can't cope with "autistic adult," but realize that we know it's still a euphemism.

Also good pointing out that it's super unethical to present this "recovery" thing as likely when research (even medical model pathology research that seems to think replacing autism with anxiety and depression counts as recovery!) shows that it's really, really not.

The emphasis on parents stress and parents priorities does concern me. (To be fair, the entire way people tend to treat children, disabled or not, as extensions of what their parents want concerns me. It's even more obvious with disabled kids and when goals are being explicitly defined by parents and professionals and not-the-kid as in IEP meetings, though.)

Good point re: human development being a lifelong process, as in, it doesn't end. We're not stagnant. I also like the reference to communicating with a tablet computer for a person who doesn't speak. (What about folks who can speak but speech doesn't do everything we might want it to do? I'm a part time AAC user.)

I don't get why happiness and sense of self vs. academic success are being portrayed as (even vaguely) opposed to each other. Not only does he go on to point out that folks learn better when happy (aka that these are complimentary goals anyways,) but plenty of folks will have their happiness suffer if they are excluded from academics or other activities "for their own good." That is, the problem he's pointing out isn't entirely about one vs. the other. It's also about trying to push for academic success and doing it badly, in counterproductive ways, because we think of the two as being separate.

I like the given day-to-day, smaller seeming examples of self-determination getting acted out. I'd like to see some examples of "bigger" stuff too, of us getting to determine what the goals even are (especially since we do have an adult making a decision in one example!) On the whole I liked this chapter better than most of the prior ones, though I'm going to echo some issues with the idea of empowerment: it assumes we are not already powerful, that we only have power when someone is kind enough to give it to us. (Beware the Choice! Beware refusing it!)

Part 13 here!

Thursday, June 16, 2016

Alyssa Reads Uniquely Human: Part 11

Still reading Uniquely Human. The series begins here, and the prior post in the series is here.

This chapter is about thinking about the future, cause we grow up and aren't static and such. In theory. To me it looks like four stories that share the similarity of "so we didn't know what was going to happen in adulthood, but adulthood did happen!" Which, just to be clear, is true of literally every child who survives to adulthood. No matter how much parents might think they can predict, and even if they're right about a good chunk of it, we don't actually know ahead of time what adulthood will be like. The future holds surprises for everyone.

Oh hey, a mention of the fact that autistic people have developmental stages and that autism is not some sort of stasis! (Autistic development: it's a thing.) And I like the quote from an autistic adult here, too. (Though I'm fairly sure this one is a case where he used "on the spectrum" to avoid "autistic" for a person who prefers some variety of identity-first language...)

Then we get four stories. In the first: conflation of tantrum and meltdowns, calling autistic traits red flags of something amiss (despite the statement that we shouldn't be looking at autism as a collection of behavioral deficits), personality being portrayed as in spite of disability (wuuuut), and some "will never" assumptions. Seems like eventually a pretty decent position, though we only get to find out directly what the parents think of it.

In the second: Oh, hey, a parent that goes straight to fear, not so much of, what is kid going to be like, but "What are they going to do to him?" (193). I approve. The things they do to us (the things some parents seem to want eventually done to their kids, once they grow up) are actually pretty terrifying, because as a society we're pretty terrible about disability. Matt's definitely still being portrayed in behavioral terms, terms where the behavior makes sense, but still in terms of behavior. Also he's apparently never been told he's autistic? The heck? I mean, yes, you want to interact with the person in front of you and not just the diagnostic label, but that doesn't make it cool to not tell the person about their own label. FFS, you should tell your kids they're autistic. They've apparently given him a good bit of the surrounding info, but there are certain words that it's important to have access to...

Third story: Immediate warning for use your words type scary stuff, yikes! Recognition that it wasn't OK, at least, but I'm shaking after reading about it. Remember folks: If you don't use your words you won't be indistinguishable. (But also remember how terrible of a goal indistinguishability from one's peers is, who else is forced to have "average" as their highest aspiration?) So we need an explanation of why parents would not mourn for an autism diagnosis, apparently? Mourning is some sort of default and not doing it, or only doing it briefly, is the atypical thing that needs to be explained? Not cool. Not cool. It seems they eventually figured out that trying to get rid of "autistic-looking" stuff for its own sake is a bad idea and that when we act autistic it's because we are autistic and this stuff is useful to us.

Fourth story: I don't actually have that many comments. A good chunk of the story has already been told in other chapters, just in different pieces. The intro is just another "oh no!" moment, and the story of dealing with schools that don't get it is familiar. Paying attention to a talent or interest when it appears, as they did, is important. I hope they got his permission to share this story, since he's definitely identifiable.

Part 12 here!

Wednesday, June 15, 2016

Alyssa Reads Uniquely Human: Part 10

Still reading Uniquely Human. The series begins here, and the prior post is here.
I'm now on the chapter entitled "The Real Experts."

So, Temple Grandin might be the first one to get famous this way, but she's not the first autistic person to write a book and get it published! Thanks to Mel Baggs for the detective work here, because sie compiled a bibliography of books by autistic authors, which is in Autonomy. Books in the same year or prior to Grandins include:

  1. Eastman, David. (1985). Understand: Fifty Memowriter Poems.
  2. Miedzianik, David. (1986). My Autobiography.
There's probably others, but one example is sufficient to say that she's not the first to do it, just potentially the first to get famous that way.

I think now is a good time to point out that there are issues even with the idea of articulate. I could have sworn Lydia (Autistic Hoya) wrote something about this and I can't find it ugh. But how often do we point out that neurotypical white men are articulate? For a different issue with the word, I did find the second piece I wanted to link, Julia's, "On Being Articulate." I strongly suggest you read it.

He points out three people who he says especially helped his understanding. Ros Blackburn (who he meets in Michigan at a conference she flew to from England in order to give a presentation that's described as "experiences growing up with autism," which makes me suspect she flew from England to be a self-narrating zoo exhibit. Michael John Carley, who founded GRASP. Stephen Shore, who recently joined the Board of Autism Speaks. You know, the organization that super duper needs to not, that I have an entire tag here devoted to why they are terrible, and that are work-stealing, white-texting liars? No one on this list is radical. Everyone on this list is white. Everyone on this list has at least a masters (Ros has an honorary masters, not sure if she has one from going to graduate school.) Everyone seems to be middle class to rich. The same can be said of Temple Grandin. I think they're all cisgender and straight, too.

(And yes, that means that including me would not fix the representation problem I'm pointing to here. I'm white, at least middle class, and have a masters degree in mathematics. I'm queer, but still, I'm not going to pretend that would lead to my helping with this issue.) I know (of) Autistic activists and writers who would, though, by being poor, by being a person of color, by being queer, by not having had access to higher education, or by several of the above. Kassiane, Lydia, Amy, Finn, Morenike,  the entire contributors list for All the Weight of our Dreams, and more. Always more. And not to be tokenized. Don't just listen to one or two and call this your "diversity" requirement.

Now, since that's about who he chose to write about rather than what they have to say (and what he chooses to relay to us/how he chooses to relay it to us,) let's get on to that.

What Ros has to tell us is good. She knows stuff about herself and tells people what she needs. Cool! The anecdotes her statements are coming in between are illustrative of what we do (behavior) but is a bit of a mixed bag on providing internal processes. 

Michael's story starts more with a biography than anything else. Also, "You might not guess that he has an autism spectrum disorder until he begins speaking about something he is excited about." (180). I assume this is supposed to be a compliment? It is not a compliment to pretend we are not things that we are. I'm glad Dr. Prizant pointed out that only two actual people on the spectrum were called to testify (because that is way too low a number) and would have liked some reference to why there were even the two. Originally there were none. Then autistic people made a fuss. (Ari Ne'eman was the other, and this reference to Ari is the reason he appears in the index.) 

I feel like Dr. Stephen Shore's story is again largely a biography interspersed with anecdotes, illustrating lessons that he may well have taught explicitly, but using behavioral examples. I did like the bit where he teaches piano to spectrummy kids but not neurotypical kids, because "he finds it difficult to understand how they think and learn." That is, autistic/non-autistic as a sort of cultural barrier.

Having read the chapter... I can't say this is really a case of treating us as experts on autism in general (and some of us are general autism experts rather than simply being experts in our own lives and our own particular autistic ways of being) but of us being framed as spreading particular messages that relate specifically to our own life experiences in the hopes that they generalize. He says we are experts, but devotes far more space to showing our behavior in anecdotes that illustrate things than to allowing us to speak for ourselves, as the experts he says we are. We're articulate... so he doesn't relay much of what we actually say, and the readers don't have to listen.

Part 11 here!

Tuesday, June 14, 2016

Alyssa Reads Uniquely Human: Part 9

Still reading Uniquely Human. Please let it be over soon. (This is chapter 8. There are 12 chapters. I get to The Real Experts chapter after this.) The prior post in the series can be found here, and the series begins here.

Here I say that you are flat wrong, Dr. Prizant: "All parents aim to be the best providers, the most understanding caregivers, and the greatest supports for their children." (157). No. You are wrong. Plenty of parents see their children as accessories or extensions of themselves, and plenty of parents draw on their children for support rather than the other way around or even the give and take that could be appropriate as a child gets older. Don't pretend that all parents are trying to be the best for their children. Trying to appear the best to outsiders is not the same thing. Autistic adults can tell you all about the martyr parent trope, because it's a thing, and wanting to get as much attention as possible for the extremes your kid reaches is a thing whether or not the parent cares if the kids extreme was good or bad. Plus the general issues re: child abuse and erasure that aren't specific to disability. Stoppit.

Now, a parent turning to this book probably is trying to be all those things. Doesn't make this an OK statement.

I won't argue with the statement that "it can be more difficult for a parent to attend to a child's needs when the child is difficult to read" (158). I will point out that that's not, strictly speaking, an autism thing. Autistic parents often have more trouble reading their neurotypical children and less trouble reading their autistic children. Neurotypical parents often have more trouble reading their autistic children and less trouble reading their neurotypical children. That's, at least partially, a cross-neurotype issue, similar to a cross-cultural issue.

I actually do agree that community can be useful for parents, because community can be useful for basically everyone. I think parents need to be very careful what kinds of communities they seek, because martyrhood seems to be contagious and so does dangerous quackery. I'm not convinced I'm cool with a half-full vs. half-empty metaphor with autism, though if you wanted to tell me my cup is filled with a different beverage... (please not carbonated, please not carbonated...)

I am definitely not cool with the primary problem presented re: "direst prognoses: what the child will never do or accomplish." The presented problem is that it's not tender and that it can affect perceptions of the kid. The frankly bigger problem? We're talking about what a child will supposedly never be able to do based on their abilities in childhood, when we already know for a fact they're disabled in a way that means atypical developmental trajectories are a thing. As in, predicting what an autistic kid will never be able to do works even less well than predicting what a neurotypical child of the same age will never be able to do. It's flat wrong. (Autistic development is a thing!)

From the story given for "Insist on Respect" I think primarily he's saying it's important to respect the parents. And when it comes to parents who really are trying for the best interests of the kid? Sure. What about respecting the autistic person? Seriously, the ways these stories are shared (and with enough info that one of my commenters has figured likely real names for quite a few, since the first names don't seem to be changed...) is not consistently respecting the privacy and dignity of the people being written about. I don't care that the parents think trying to pee in the display toilet is a funny story, I care what the kid thinks of it being shared. (This one hasn't got a name attached, thankfully.) Like, yes, these parents are saying they want to be respected as parents and that they want their children to be respected, but just like I don't trust professionals as far as I can throw them, I don't trust parents of autistic kids to trust what is and isn't respectful of those kids as far as I can throw them. Not while they're making public the stories and videos that they do.

OH FOR PETE'S SAKE. WHY ARE YOU CONFLATING TANTRUM AND MELTDOWN. You should know better. You should know better. You should really know better stop stop stop. Also, talk about listing "deficit" behaviors that a parent gets to stop through, apparently theater? I thought you said you didn't think we should describe autism as a list of deficit behaviors? Follow you own logic.

Also I gotta say I mistrust folks following the "gratification and inspiration that comes from helping others." (172). Inspiration porn is a thing. Also, the state director for Best Buddies was all inspirational and such, and she was also the most condescending of anyone I ever interacted with by typing in person. And special education teachers? There are reasons that I don't trust currently practicing special educators, including the fact that they seem to think acting "less autistic" is a good goal. Come to think of it, that's the same reason I don't trust clinicians, including Dr. Prizant, who despite a lot of nice words on top, is totally still writing about "emerging" and reducing scripts and other things that are at best, code for acting less autistic rather than saying it straight out.

Part 10 here!

Monday, June 13, 2016

Alyssa Reads Uniquely Human: Part 8

Still reading Uniquely Human. Still going blarglefeh at behaviorizing descriptions of autistic folks, even when the stuff we're doing is stuff that he's acknowledging has use. The prior post in the series is here, and the start here.

Within the book, I'm now on what he calls Part 2: Living with Autism. I am not even going to try to resist the snark option there. I have a cat named autism and she is soooo hard to live with. And when I was asleep, my autism got away and shaved the dog. Disembodied autism is not a thing. Disembodied autism is not a thing. Disembodied autism is not a thing!

Teachers and aides that we feel safe around or who even help us feel safe when other stuff is going wrong, however, are a thing. One of the teachers who's been like that for me was even a formal special educator. (Emphasis on former here.) She was my residence director in Tianjin, and she was the only teacher or administrator there who didn't panic when I melted down or decide that the meltdowns were tantrums. (She was apparently worried the time that I melted down, was alone, and she was several hours away over a weekend. Which is reasonable, since she had no knowledge of how safe I was alone during/after a bad meltdown. Pretty darn safe, by the way.) I've had a couple others at college, generally mathematics or engineering professors. As in, absolutely not trained in any "therapy" or "behavioral management" stuff "for autism."

What do all these people have in common? They're able and willing to notice both the things that I can do myself and the things I need support with, both my abilities and my needs, at the same time. They're aware that neither cancels out the other.

Concrete example: My ability to speak gives out on me pretty regularly. The first time it happens in front of a given person can be scary, because I don't really know how they're going to react. I'm also a graduate student. My ability to speak gave out on me during a graduate math class with a professor who didn't yet know that could happen, right after he asked me a direct question. (Timing!) I was able to communicate that I wanted a whiteboard marker (standing up and reaching for a marker is reasonably easy to notice, but I couldn't reach it so he asked if I wanted it and handed it to me after I nodded.) I started writing my answer instead. I wound up writing a lot in that class, and the professor was totally able to recognize both that the writing instead of talking was sometimes needed and that I was capable of learning the material. (No, I don't think that should be unusual. But it is unusual.)

I respect that he was willing to include a parent saying "I just want to tell all of you who are parents of young children that you can't trust professionals as far as you can throw them" (138), considering that he is a professional. I've got to wonder how he'd react to autistic adults similarly not trusting professionals as far as we can throw them, and how he'd react when he is the professional we're not trusting, but I've got no evidence in any direction there.

As far as the traits or instincts he's written for who tends to "get It" go:

  • I'm cool with the way he describes empathy but still twitch at the word because of Simon Baron-Cohen and Theory of Mind associations.
  • I feel like the question re: stimming is likely to be for the purpose of reducing stimming by way of reducing the perceived causes, which isn't cool when the stimming is how we're showing happiness or excitement. (And folks who think of stimming as negative/as purely a reaction seem likely to not realize the difference between happy stimming and not-happy stimming.)
  • Oh hey recognition that we have body language and that some people (people who "get It" as a subset of this group) can read out body language. That's cool.
  • Yay humor! (Make really really absolutely sure that the humor is considered respectful by the autistic person, not just by the family or the professionals we can't trust as far as we can throw them, k thanks.)
  • Yay pointing out that strict behavior plans and therapy programs can cause harm by not reacting to the autistic person's reasons for acting.
I think I like this principal, who "understood that it wasn't going to help this particular boy for yet another adult to tell him that he was behaving poorly or that he needed to settle down." (142). Does that help anyone, really?

I also like pointing out that professionals can cause problems through stubbornness and inflexibility. (HEY autistic folks aren't the only ones who can be stubborn. Also, trying to out-stubborn an autistic person is probably not going to go well...)

The problems he points out as far as how people fail to "get It" are pretty good. I'd like to add that it's not just the parents hopes and dreams they are often insensitive to. However insensitive to those goals educators can be, they tend to recognize that those goals exist. The idea that we, the autistic students, could have our own goals that are not the same as those on the IEP or those of our parents seems not to register as even a possibility. Remember whose life this really is. I'm not living my mom's life or my dad's life or my teacher's life. I'm living mine, and at the end of the day it's my hopes and dreams that matter. Not my parents hopes and dreams for me. That is: remember our perspectives and shoes.

Continue to part 9 here.

Friday, June 10, 2016

Alyssa Reads Uniquely Human: Part 7

I'm still reading Uniquely Human. I am getting very tired of running into the Exact. Same. Problems. every chapter. Can I just at this point write, "Assume every description and anecdote is written in a behaviorizing way, or at best partially behaviorizing," have y'all take it as a given criticism, and write that fewer times already? Please? And since I've linked that same Disability in Kidlit article for the last several parts, can we take it as background material y'all reading this post have also read?

Anyways, the preceding part of my review is here, and the series begins here.

I take the usual issue with the anecdotes.

The comparison of learning social rules and learning to read body language to learning a second language in adulthood is actually quite apt. I've heard quite a few autistic adults compare body language to a foreign language, and not a particularly logical foreign language. (I think by logical vs. not logical in a language, the metric is how many exceptions there are to the "rules" of the language? English, for example, is not that logical because the exceptions have exceptions and we rifled through the pockets of other languages for spare grammar.)

Another side of the "foreign" language bit is that, well, autistic body language and neurotypical body language are different, even within the same macro culture. Neurotypical people usually can't read my body language very well, and often can't read it at all, because they aren't used to interpreting autistic body language through learning what things mean and tend to simulate what would it mean if they were using that body language. It doesn't work well, because they are very different from me. Autistic people tend to be better at reading me, and I'm better at reading other autistic people, but since most people are not autistic, it looks like the non-autistic folks can read (general) body language and autistic folks can't.

Dr. Prizant notes that one problem we run into is that we learn the rules and the exceptions, but it's another (and again unwritten ugh) rule that "generally people don't talk about the rules, they just follow them." (115). Which I'm going to point out is something in neuronormative culture that, yes, it's useful for us to know, but it's also something where changing that expectation is a required part of meeting us anywhere but the 97-3 split y'all like to pretend is halfway.  He doesn't point that out, by the way. I think he's still about helping us fit into a version of the mainstream where some people are a little more understanding while teaching us how to fit, rather than realizing that the mainstream is going to need to change big time.

Some more anecdotes follow with the usual problem. Blech.

One good point here: a problem with getting an assignment done could result from the assignment not making sense to the student. (Been there, done that, didn't get the T-shirt because the paperwork involved made no sense to me and no one believed me enough to help me with the paperwork...) Which is actually sufficient explanation on its own before shoving in the extra assumption that we don't realize it's a good idea to do class assignments and please the teacher. (Hint: I know full well that not doing an assignment is a bad idea. I'm still not going to push myself into a meltdown trying to do stuff I can't do, unless I know for a fact that letting the teacher see that result will get them to stop pushing me to try the thing I can't do. Self-preservation, not lack of social awareness. You can get a decent idea of my internal panic around the language utilization reports for my study abroad here, here, and here. The eventual resolution was "your residence adviser will help you" followed by "after her report from the attempt, we're not making you do those anymore." )

Also I feel like this tweet from real social skills is relevant here, since accessibility of assignments is getting discussed, even if it's not really getting framed that way:

Good idea pointing out that labeling pictures with emotions is different from understanding emotions or recognizing our own. (Did you know that we can't actually see our own faces to see if we look like w're smiling without the aid of a mirror?)

Soooo Lovaas got mentioned, but the apparently problem is that he insisted incorrectly that the ability to make eye contact when asked was needed in order to learn other skills. And that is a problem. But that as sole cited problem is really icky. (This is the guy who thought electric shocks were a good idea. This is the guy with the "you've got to build the person" idea. Very ew. Talking about him as an autism specialist and not as a horrible human being who didn't think we were human? Thanks, but no thanks.)

I have to wonder how much of what he's interpreting as not having the instinct to communicate what's bothering us is actually:

  1. Compliance training having explicitly taught us not to communicate what is bothering us.
  2. Difficulty initiating communication, which is right in DSM-IV and therefore shouldn't be a surprise to a clinician. 
  3. #1 making #2 even more of a thing.
Continue to part 8 here.

Thursday, June 9, 2016

Alyssa Reads Uniquely Human: Part 6

I continue to read Uniquely Human. I feel like I am repeating myself a lot as I do so. The prior installation in the series can be found here, and the start of the series is here.

Chapter 5 (parts and chapters are 1 off from each other because I did the front and back material first) is titled Emotional Memory. Heads up for discussions of PTSD and of flashbacks. Heads up also that he says this isn't the same as PTSD without really saying why he thinks it isn't.

When Dr. Prizant writes, "Julio suddenly found himself recalling his moments of panic and sharp pain, as if he were experiencing a flashback" (95) I have to wonder how much it's an "as if." A lot of autistic people have PTSD. A lot of autistic people have flashbacks. Some of us have fully immersive memories even when the memory isn't necessarily traumatic (not me, no minds eye over here.) To be clear, I'm not saying Dr. Prizant is wrong to notice the strength of memories. I'm saying that our memories can be even stronger than he's writing.

These memories have effects. I think that the descriptions in "How memories explain behavior" are useful, though there's always that behaviorizing thing. Explanations are given, but it's external detective reasons (he talks explicitly about using detective work to find the explanations) rather than internal motivations, and there's generally an assumption that overcoming whatever the traumatic memory was is a goal. (I think it often is, but sometimes the actual solution is avoid the trigger.)

I like how he discusses that "Anything can be a trigger."
I am very confused by how he thinks "Good job!" and similar praise would be a surprising trigger for anyone who's ever dealt with an ABA or discrete trial type therapist. That's something most anyone who really listens to autistic adults would know. (Unless he's giving it as an example that parents or educators might find surprising? He seemed personally confused as well, though.)

He then turns to PTSD. He says there are differences between what these students are experiencing and PTSD (sometimes I guess) but that there is also overlap (like a lot of autistic adults actually having PTSD!) I guess the "rarely prove as debilitating or intrusive as PTSD can be"(102) leaves space for emotional memory stuff to sometimes be as bad as PTSD, but no mention of the fact that some of us literally actually have PTSD.  Which would totally explain why PTSD research is useful for understanding our issues.

Oh hey a mention of avoiding the triggers as a strategy.

Looking at Amy's story, I don't get how the option of going to the theme park without going on rides isn't forcing her to go? It's still making her go to the theme park even if it's not making her go on the rides...

The idea of explaining exactly what is going on and what will happen so that we know what's coming is a good one.

Not calling things "work" -- I get the logic there, but there are also problems! There is, in fact, a difference between work and play, and a difference between free play and therapy. Not giving someone the words to communicate those differences isn't a good strategy for getting them to accept the one of the two that they dislike. (It's going to contaminate the one they like.)

Making a life that has positive memories in it is also a good idea. (No, really, he suggests this in the closing for the chapter.) It's important to keep in mind what we're going to find positive and fun because it's often not what parents and professionals would expect.

You can find part 7 here.

Wednesday, June 8, 2016

Alyssa Reads Uniquely Human: Part 5

I'm reading Uniquely Human. The start of the series is here, and the previous part here. I've been loving the comments so far -- very informative! Please keep telling me things :D

Somehow the description of Derek's internalizing Dr. Prizant's pattern/rhythym of September visits rather than October ones is reminding me of the description of David's rules in, well, Rules: Derek has an idea of how the world should work and that's a rule, but we don't get to see why it's a rule. It's just a rule. (And David's Rules were given as an example of behaviorizing depictions in that Disability in Kidlit article y'all should really read. Just pointing that out.)

I raise my eyebrow at the idea that autism is a disability of trust. I raise that eyebrow very high, figuratively. Literally I don't raise it much because my eyebrows remain on my face and my forehead isn't that big.

The idea that we can't always trust our bodies I buy -- I can trust that if my body is giving me information, then the information is good, but there's a lot of information I don't consistently get. Am I hungry? Cold? Tired? I don't know. I've broken bones and not known it. This isn't quite the same as the mistrust that Dr. Prizant is describing: he's describing not understanding what minor illnesses like colds are (could it be that no one bothered to explain to us that these things exist and are minor and will pass? Also, look back at the echolalia chapter for the "Do-ahhh" example, kid knew full well what was wrong even if he couldn't say it in the standard words.)

I think "routine changes and unexpected things are hard" is getting framed as being about trust in the world, which, I can kind of get, but I don't fully agree with. A lot of autistic people have funky circadian rhythms, and I know the way mine is funky is that it is tied very firmly to the sun. That is, I don't actually care what the clock is doing for the purpose of determining when I am alert vs sleepy and when I get hungry. I care what the sun is doing. My troubles (or lack thereof this year, when I was able to shift most of my schedule a clock hour when DST started) with daylight savings aren't about trusting when things happen. They're about "uh I don't care what the clock says, I wake up when the sun rises and then I want food" and similar mismatches caused by following the sun.

Similarly, while trust lost in the world could work, approximately, for the other example given, it's not the only explanation possible and just saying "trust in the world" isn't satisfying. Plus the descriptions, even with some level of "trust in the world" explanation given, are at best mostly behaviorizing with a touch of humanizing in there.

Oh god I think the trust in others part is going the Theory of Mind route, though without using those words. Apparently most people are hardwired to be able to predict the behavior of others and read body language and such. Which others? Others like themselves. Most people can't read my body language for beans. If this isn't Theory of Mind itself, it's got the same rhetorical issue: theory of whose mind?

The constant vigilance related to this trouble predicting people (who are often terrible to us!) is dead-on, though. Oh, my goodness, are people exhausting to deal with, because they're unpredictable and don't think they are.

Fear and anxiety are definitely also things. (Holy wow do I have anxiety. A lot of folks think I don't get scared easily because they don't recognize my body language well enough to tell when I'm scared and because I don't make that much effort to avoid the things that scare me (too many things!) plus I definitely have Gryffindor tendencies anyways. They're wrong. Sensory issues, people having actually been terrible (still no mention of how much more frequently we are victims of abuse by parents or teachers, which would totally cause disregulation and fear) , unpredictable animals, and more.

I like how Dr. Prizant mentioned that things other people might like could be scary for autistic people. I also like that he realized (at least in the case described) that forcing a student to participate in the scary thing would be a bad idea, and said so (plus why!)

I like how he points out that when we try to control situations, there are actual good reasons we might try to do so! Pointing out that professionals often try to seize control is also handy, but can we talk a little bit more about how much of autism therapy is about the therapist being rigid and controlling? Because is it ever!

I know "selective mutism" (or apparently "elective mutism") is the term used, but ugh. As someone who loses speech, and not just from anxiety, I really, really hate descriptors that imply I am choosing to have speech go kaput on me. (Also the kid may well have been situationally not capable of speech in addition to sometimes choosing not to speak. This is a thing that happens.)

The bit on how children exert control is definitely behaviorizing in the depictions. Since the birthday party is for Jose, not sure why the parents and therapists are so stubborn and rigid in their insistence that it be planned their way, as in, expanded beyond the group Jose originally said he wanted to invite :p.

By persistently giving the message "You must change," we are inadvertently communicating "You're not getting it right. You're screwing up." (90).
Inadvertently? Inadvertently?!  Folks, if y'all can't figure out that telling us constantly to change everything about ourselves is telling us not just that we aren't "getting it right" but that we are inherently wrong, then we are not the ones lacking in empathy here unholy pancakes what even is this. You don't get to do this stuff and then claim it was an accident. (Plus I remember Lovaas, there's the pieces but the therapist needs to build the person?)

The advice for building trust seems OK on the surface though I don't pretend to trust the ways it'll be interpreted and used by parents and educators. The celebrated "successes" will likely be times where an autistic person acted in neurotypically expected ways. (As a contrast, and illustrate to what else success could mean, one of my big goals this year was switching over to writing or typing as soon as doing so would be more efficient than speaking, rather than waiting until speech was entirely gone.) The choices offered are likely to be superficial things like which sandwich we want or which approved activity we want rather than the choice to not participate in any of the social options or generally to reject all the suggestions and come up with something entirely different. ("When do you want to practice eye contact?" Um, literally never, thanks.) Which isn't a problem with the advice, but it is a problem that I want to warn parents and educators about.

You can find part 6 here.

Tuesday, June 7, 2016

Alyssa Reads Uniquely Human: Part 4

The saga continues! Part 3 is here, and if you want to go back to the beginning, that's here.

Chapter 3 is titled "Enthusiasms."

I feel a bit odd about the listing of "special" interests, here called enthusiasms, though it's mentioned that many call them "obsessions." (I tend to call my own "Autistic obsessions" but I'm the kind of twit who throws themself into a wall hard enough to shake the stage to protest the idea that indistinguishability/loss of diagnosis is an optimal outcome so take that with a grain of salt.) I've never felt weird about autistic people listing the interests themselves, which is fairly common: there's an entire Tumblr blog dedicated to sharing our interests! I think part of the difference is that when we do it, we get to explain how the interest makes us feel and why we have it and how we expressed it, and here it's just a list. Like in David's article for Knots. (You need to make an account to read the article online, but it is free.) I think that extra detail makes the difference for me between behaviorizing and humanizing when we describe the interest.

I like how Dr. Prizant points out that our interests are a source of, well, interest, plus happiness, and that this is on its own an argument against discouraging them. Yes thank you we have internal thoughts and feelings and what makes us happy matters on its own merit. Glad you pointed that out.

I also like the example of how a teacher was able to use a students enthusiasm in order to design an alternate assignment involving reading and writing that he completed happily because it fit the interest. I like how he points out that most people have interests and hobbies (and admits that we tend to get more intense in ours, because we do, but it's not the act of having an interest that's autism-specific.)

There's definitely a problem with the idea of "splinter skills" or "savant skills" though, in dividing us up into the parts you find competent or valuable and the parts you find worthless, and frankly a problem of applying improper standards when you think the neuronormative "overall profile" or "developmental level" is going to be a useful measure for us to have abilities or support needs that stand out from a "profile" we didn't really fit anyways. I say this as someone who hasn't had a single coherent developmental level (as defined neurotypically) since I was about five months old. Possibly longer. Doesn't mean I'm a savant or have splinter skills. It means autistic development is what happens here, rather than accelerated or delayed neurotypical development.

The "Remarkable" tales of passion are stories with happy endings that come from having encouraged, supported, accepted, and sometimes taken advantage of our interests, which is cool. The accounts definitely lean behaviorizing rather than humanizing (if you haven't read the behaviorizing and humanizing link yet, it's to Disability in Kidlit and the idea applies just as well to describing real autistic people as it does to describing autistic characters.)

The use of an interest, bringing supplies to education meetings so the student can engage with the meeting when they want and engage with their interest when they'd rather do that, is a good idea, and since involving students in their own education is important, I really like that idea.

He does address times when an interest can get us into trouble -- the key is when pursuing an interest could violate someone else's boundaries/consent, we don't get to do that. (He doesn't put it in those words, but it is the common thread between the examples given.) Which is legitimate.

Teaching time and place can be useful, but I'd like to add one more piece: supporting us in our choice, if we make it, to spend most of our time in the places where our special interests are accepted and are how we connect with people anyways. In autistic spaces, taking turns sharing lots of information about our interests is considered social engagement. (The taking turns so that we all get to do it is part of what's great about it.) Plus we can find folks with the same interest. The other thing is that many interests will have clubs or interest groups: heck yes we may want to join those! Arranging to spend more of our time in the places where we already fit is very much a thing.

In the section on teaching time and place, Dr. Prizant notes that a common problem in people's responses to our interests (and how we express them, which absolutely can be in infodumps) is focusing on behavior to the exclusion of motivation. Yeah, that's an easy mistake to make when all you describe is the behavior, even when it's behavior that you think is OK, isn't it? (Yes I'm pointing out that you are narrating behavior over motivation in your book, Dr. Prizant. Please follow your own logic and suggestions better.)

The idea of using interests to support engagement in school I think is useful. I'm a bit wary of thinking a career might come out of these interests, for reasons Dani's expressed well. Turning an interest into work can burn the interest out, and besides, some things just need to be for fun. That doesn't mean it can never work -- he gives some examples where building an interest into a career seems to have gone fine, at least from the outsider perspective, but keep the caveats in mind before suggesting someone else do it.

You can read part 5 here.

Monday, June 6, 2016

Alyssa Reads Uniquely Human: Part 3

I'm now reading Chapter 2. The previous part (Chapter 1) is here, and the start of my reading Uniquely Human is here.

I think I've put my finger on one of the things that's been bugging me. Yes, we go on to (at least partially) reframe the ways the students Dr. Prizant describes are acting, but it's still a behaviorizing (or sometimes partially behaviorizing) portrayal. The behaviorizing portrayal is then followed by investigating motivations on some level, but we're still starting with the standard tropes.

It's part of the general theme I've been coming to, where this is better than most autism narratives (I haven't thrown the book at the wall!) but there's a lot of "has a good idea but doesn't quite follow through on it."

Another example is the big idea of not thinking of autism as a bunch of symptoms/deficits. Yes, this is a good idea. But then, re: echolalia:
In children who can speak it is often among the first indicators to parents that something is amiss in a child, when, instead of responding or initiating with the child's own language, the child echoes words or phrases borrowed from others. (37).
Reaction the first: Uh isn't that describing a symptom or deficit.
Reaction the next: I think original language is what's really meant, echolalia is our language for a lot of us... (see also my echolalic poetry, here, here, and here. Really want to argue the recombinations aren't my own language, even if the pieces are echoed?)

Parents apparently worry that echolalia will mark kids as... quirky. Yeah, I've got a complicated relationship with that word. (Comparative and deceptive) safety, erasure, "soft" disclosure, so many meanings behind that word.

I'm not sure why the part of trying to stop echolalia that is worse is the part where it's on the path to learning more "standard" communication (what I assume he means when he says learning to communicate and connect, since he's said in other spots that echolalia is communcation) as opposed to the part where it's silencing current communication (which he also points out as a problem.)

In this chapter I finally get to see advice from an adult on the spectrum cited as such, where he's learning from us as the experts he says we are rather than from (more humanized than by most clinicians) objects of study. The tendency has definitely been to treat us as subjects that he observes, which, yes there's useful stuff to be gained from observation but it took a while to get to the "actually using information you can get by asking us" for a book that calls us experts.

I really do approve of his pointing out that for none of the children that he worked with was echolalia actually meaningless. This is important! He studied this fairly heavily, it seems, and I would love to grab the citations because as much as echolalia as communication is one of those things autistic adults have been saying since ever, I don't know of too many clinical/academic citations to back it up. Finding that we use echolalia for all the same reasons and functions neurotypical folks use more "standard" language for is a handy thing to be able to cite.

However: If we're going to call echolalia part of language/a language, maybe we shouldn't call it a path to acquiring language, with no modifier on language? Echolalia really can be a path to acquiring non-echolalic or less-obviously-echolalic language, but 1) it's made of words and 2) serves the purposes of language so it's already language, so we should really note what kind of language it can be part of acquiring. I'd like to point you to the last three full paragraphs of "If you don't use your words you won't be indistinguishable" now. Really the whole thing but those last three paragraphs are what's most relevant to my points here: less-obviously-echolalic language is not the same thing as not-scripting or not-echolalic language. It's often a defense to make the echolalic nature less obvious, because folks will often assume the speech is meaningless if they know the speaker is autistic and they recognize that it's an echo/reference. (As opposed to neurotypicals apparently being clever when they make references?) Privileging language that you can't tell is echolalic, whether or not it really is, ties in to that same problem. Stop that.

Similarly, we don't take our "turn" in the coversation by merely echoing and "not really respond" (47). Remember that echolalia as studied and described here is 1) made of words and phrases and 2) serves the purposes of language so it's already langauge and is a response. That doesn't mean it's not useful to break long and complex sentences into smaller chunks. It is. Doing so gives us a larger library of phrases to work with and recombine, if nothing else (and it probably helps with understanding in ways that make recombination easier anyways.)

Then we get a story where Dr. Prizant asks a student why they do something. Yay, asking us. (So when I started reading Folk Psychological Narratives, which I swear I will eventually finish and then poke holes in the places where it doesn't follow it's own logic when applied to autism either.... the point is Hutto repeatedly emphasizes that the best way to get information on why a person acted as they did is to ask them. There are times where that could not work, but autism is not inherently an exception.)

In Justin's story, I think that there is some interesting framing of motivations, or some interesting motivations, even if the actions are good. Justin was getting nervous, and he was scripting (and the script was noticeable because it was not normative for the situation,) seemingly out of anxiety. So:
To replace this unusual greeting with a more conventional one, his parents prepared an index card with reminders of what to say in social situations. (49).
So we're doing this to replace the unusual greeting? Not to ... help with the anxiety? (Which could absolutely have a side effect of a more conventional greeting happening.) Interesting priorities there. If we're doing it because of the greeting, that really is trying to get rid of autistic behaviors because they're noticeably autistic. If we're doing it because in this case the script is a sign of anxiety, we're trying to help reduce a source of stress. Rather different goals.

Continue to Part 4 here.

Friday, June 3, 2016

Alyssa Reads Uniquely Human: Part 2

Still reading Uniquely Human, now on Chapter 1. Part 1 is here. Warning for mentions of abusive "therapies."

There's quite a few stories about students, like Jesse. (please tell me Jesse and all the other students referred to gave permission for their stories to be used, and I do mean Jesse and those students, not their parents, or in addition to their parents if they're still minors and parental permission is required...)

The point about asking why, about trying to understand our perspectives and experiences rather than trying to control behavior as the sole (or primary) goal is a good one. It's also something autistic adults have been saying for a long, long time.

Unfortunately this behavioral-assessment approach -- that is, using a checklist of deficits -- has become the standard way of determining whether a person has autism. (17)
I'm not sure that  behavioral assessment is the same thing as a checklist of deficits, though our in autism land they pretty much go together.

I like how he pointed out the circular reasoning where we're autistic because we flap and we flap because we're autistic. It's circular. Professionals don't usually point that out.

I also like how he questioned what success means here. I think more questioning of that would be good. (Maybe it'll come up again in later chapters? That's a what question and not a why question anyways, and "why is this the idea of success the one that's used" is addressed some.)

On dysregulation, which gets a good bit of attention in the chapter:

I'd like to ask if we're really more vulnerable to everyday emotional and physiological challenges or if we're tired because we're dealing with more of them. While I ask, I'd like to see how many neurotypical people can function while walking on an untreated broken foot. I'd also like to ask how many neurotypical people who unexpectedly found themselves unable to speak 10 minutes before they were scheduled to present at a conference would still present. Not more vulnerable than y'all, just dealing with more nonsense.

Also I'm fairly sure sensory and movement differences are core pieces of autism, not "associated challenges."

Looking at environmental stuff that makes self-regulation harder is a good idea.

I think saying we are unusually poorly equipped to deal with certain challenges (lower threshold) and have fewer innate coping strategies is a simplification at best and wrong in places. We wind up getting into trouble more, that's definitely true, but how would you cope in an environment designed for how I work? It's often about mismatches. Also, we have plenty of coping strategies. Noping out of bad environments (avoiding them) is an effective strategy when we're allowed to use it, but it often gets called eloping because for some reason y'all want us there anyways. Covering our ears is a semi-effective way to deal with loud. Those things that get taken as signs that we're getting dysregulated (and he does mention this later in the chapter! yay!) are often actually ways that we stay regulated, and that realization could (but only partially did) lead to the conclusion that we're not so much short on coping methods as disallowed from using them.

Like with Dylan. Is refusing to proceed dysregulation, or is it an attempt to avoid an environment that would cause dysregulation if he proceeded? I'm not in trouble yet but if I go into the supermarket I will be doesn't mean I'm overloaded, but that I'm trying to avoid overload.

I like the point that hands over ears+rocking in noisy environments is both a sign of distress and a coping method. I really wish this level of sensory sensitivity wasn't called extreme though, because it isn't. It's pretty common. I do that, and I'll stiffen noticeably too.

The idea of watching specific stims that tend to show up under stress as a way to gauge stress is a good idea. Good advice. Yes. Good pointing out the issue with "behaviors."

BAD statement:
In earlier decades many researchers aimed to rid children of stims, some employing punishment and even shock as a means to eliminate "autistic behaviors." (22)
Not bad because false. Bad because this isn't just the past. This is ongoing. This is now. The Judge Rotenburg Center, which is within biking distance of my high school, still uses shock. Centers spray vinegar in the mouths of children, and parents sign off on this. And if you don't think restraint isn't a punishment, if you don't think holding someone's hands down when you know they don't like to be touched isn't a punishment, well you are wrong. Those are punishments. Autistic activists and scholars get death threats for pointing out that this is ongoing, that this still happens, and sometimes even for pointing out that it ever happened though Dr. Prizant is saying that much.

The practical ideas for Glen's story sound good. Yay!
I'd like to point out with Caleb's (pretty good) story that 3rd grade is also within the age range where having imaginary friends is pretty normal even among neurotypical kids.
Pointing out that echolalia has use is important.
Pointing out that a lot of what we do is dealing with a world that is anxiety-provoking and that trying to get us to stop is actually killing our coping strategies is also important.

Gonna point out that people keep using "unpredictable" as code for "we don't know the pattern" and that those are different things: it happens in a lot of teacher descriptions, but Dr. Prizant does it in his own descriptions too on occasion. It's actually not unpredictable. (Seriously as soon as I read that Hesse used movement to regulate and that gym wasn't happening on a day when it was supposed to I could predict meltdown. Not unpredictable.) Also, Jesse totally knew what the problem was and what he needed. He wasn't able to act on it, but he knew.

Lots of stuff that's exactly what autistic people have been saying since ever repeated with/in stories about children. The hug thing is like that. (And remember that your body language confuses us just as much as ours confuses you -- what constitutes "warning" for a hug is relative.)

Slightly wondering why the modifier "social" is used with communication so often. ALL communication is social? It's got to have at least 2 sides.

Since all the examples given were kids at the time of the stories, I kind of get why children is used rather than people for the general case, but... really? This isn't like person-first vs. identity-first where there are people on both sides who'll get offended, and where there exist people whose personal experiences lead them to identify each way, no matter how strong my opinion in one direction may be. There is no group that is going to be upset by saying "people" instead of "children" when a statement is applicable to people of all ages. (I'm a mathematician. I like to generalize as far as actually works, but no farther.)

After this chapter, my take is:

The practical examples of advice from stories seems pretty good.
At least admits the punishment and shocking exists, but it's still happening and don't call it something from earlier decades while it still happens.
None of the advice is new to me. I have read all of it from autistic adults, and several times each. Heck, I've written some of it before. To be clear, that's not bad. It just means this isn't as groundbreaking as most readers will likely think it is. (Autistic adults make this same comment about research studies showing obvious things all the time. Dr. Prizant is in very large company here.)

Definite tendency to not question far enough, and to miss/not mention some important logical results of what he's saying. (If you found the pattern it's not unpredictable anymore. If what we find challenging is not what you find challenging, we could be (are) dealing with more challenges and running out of gas faster under higher stress doesn't imply a lower threshold.)

Still better than most autism books out there. (Which is very much a problem with all those other books.)

Part 3 (Chapter 2) can be found here.

Thursday, June 2, 2016

Alyssa Reads Uniquely Human: Part 1

I'm reading Uniquely Human: A Different Way of Seeing Autism, by Dr. Barry M. Prizant, with Tom Fields-Meyer. I'm not entirely sure what the "with" means here -- did they write together? Did Tom edit for narrative, since telling narratives is apparently his thing? Dunno. I'd like to be able to like this book, since it's pointing out that trying to eliminate stuff we do just because it's autistic isn't a great idea, and since it was recommended to me.

Anyways, I know how my commentary tends to go, and I'm dividing this up. Part 1 is all the stuff that isn't in a chapter: cover, reviews that are printed in the book, book jacket, contents, authors notes, introductions, the index, that sort of thing.

The first thing I notice is that Temple Grandin loves his approach. That makes me suspect that the book is 1) going to be better than, say, Autism Speaks stuff, but 2) probably aspie elitist1

On the book jacket: Everyone's using person-first language2, and it's all children3 with, not people with. That's expected, but not a great sign. I know Michelle Dawson is good, but I'm not so familiar with Geraldine Dawson. Are they related? I don't know the Rabbi. I know Tony Attwood, and his appearance is not a good sign. Famous, claims to be an ally, and his comedy is full of jokes that really are at the expense of the autistic people in the room. Doesn't like having this pointed out. I'm not sure who Elaine Hall is, but I approve of her stating that the true experts are autistic people. I get very nervous seeing that she founded something called the Miracle Project and wrote a book about unlocking autism. 

Moving to the inside of the book jacket: We start with criticism of how autism is typically "portrayed as a checklist of deficits," which is a good sign because that's 1) typically what happens and 2) a big problem. The shift Dr. Prizant is suggesting, that we think of autistic behavior as coping methods for an overwhelming world, is not new but the idea of explaining some of what we do that way is reasonable. My isolation headphones, for example, are exactly that. 

The inside "advance praise" comes from some names I know and some I don't. The autistic people on that list are both white authors who run aspie elitist, and I still see the goal of "help" to "gain a greater social understanding," as in helping us learn to understand (and presumably imitate) how other folks social. Which is admittedly useful, but without helping other folks understand how we social too it's one-sided. I'm thinking back to "What would meeting you halfway be?" here. 

The table of contents doesn't have much that jumps out at me, though one chapter title does: The Real Experts. Since I totally just did the cover art and wrote a contribution for a book by the same name, I take a glance. Seems to be about actual autistic people/people with autism, which is good. I don't know the language preferences of the specific people so here's both just in case. (I also notice page counts: there are 12 chapters, and only 1 occupies fewer pages than The Real Experts. Hrm. If we're the real experts, wouldn't we get a bit more space?)

Looking at the author's note, I see that it addresses some of the language cues that made me nervous. He doesn't say why person-first language is his preference, just that it is. (Why?) That's not satisfying. The occasional reference to Aspergers I get. Given how publication schedules and writing work, he probably wrote a good chunk of the book (the draft submitted to the publisher?) before the distinction was dropped in the official release of DSM-5. But! The way he's using it lines up with an error that is a personal pet peeve of mine. Just because a person is tested as having average or higher cognitive and language ability does not mean their label was Aspergers under DSM-IV, or that it should have been4. *Waves hi.* Ding-dong, you are wrong.

In the introduction, Dr. Prizant expresses concern over the environment of fear and anxiety around autism, where parents are super scared. I'm glad to see that, because yeah the fear is a problem. Of course, he's not really saying anything about where this fear comes from. (Because doing so involves pointing at colleagues, at organizations where colleagues work, and at resources he suggests?) Also, when asking “which treatment will succeed?” can we also ask what success means?

I like many of his examples here: pointing out that everything he's seen an autistic person do, he's also seen neurotypicals do, if at a different age or under different circumstances is a move I approve of. (I also think it's important to get into the differences of when and why, but that's different from thinking similarities between autistic people and non-autistic people are irrelevant or shouldn't be discussed.)

I like the statement about learning from autistic people, though I have to question how “rare” the “ability to explain their own experience of having autism” really is. Is it that it's rare to be able to? Or is it that through experiences where professionals conclude our ways of being and acting are to be eliminated without concern for why, and through getting asked the same questions again and again from parents who want us to translate their children, treating us as resources rather than people, we learn not to explain this stuff. It's ignored because our supposed lack of theory of mind means we “can't understand what it's like to be ourselves,” and it's ignored because the parent really wanted to know how to get the kid to stop rather than what the purpose was, and it gets more repetitive than even we want to be. Remember that explaining why we did the thing the staff person didn't like can be taken as further noncompliance. Are you sure it's that we mostly can't?

I now turn to the back of the book. The resources guide looks like a mixed bag. A lot of the titles make me question the perspectives and goals of the authors – intervention “for autism” is rarely a good sign, for reasons that Dr. Prizant actually pointed out in his own introduction, please follow your own logic. Floortime is “gentler” but definitely about engaging with the kid in their way in order to try to draw them into engaging and acting in neurotypical ways. I would be shocked if anything with “unlocking autism” in the title is decent, and I know enough about the social thinking curriculum to run the other way, far and fast. Pointing to AAC resources is important5, though, and Paula Kluth writes good things, including You're going to love this kid. I follow PrAACtical AAC and they're mostly good.

Websites and organizations are again … interesting. Anyone who suggests Autism Speaks as a resource rather than as a group to avoid loses MAJOR points in my book6. If you're talking about the fear and anxiety around diagnosis in the same source where you suggest them, you lose points for inconsistency as well as for suggesting that organization. You don't get to have it both ways. Have you read the stuff they put out?? ASAN and GRASP are at least run by actually autistic people. Autcom has some autistic leadership but after parents who used to be board members wore badges indicated they still were while defending inaccessibility to autistic people, yeah, I don't trust them. Also Autism Society of America impeded an autistic attendee in contacting police after she was stabbed at their conference7. That's a thing that happened.

Without any explanation of what “meaningful progress” means, I can't speak to the SCERTS model. Maybe I'll see more about that in the chapters? I'm a bit nervous when social communication comes up.

Looking at the index now:
Huh. The names of autistic people I recognize look awfully white and middle to upper class. Also fairly aspie elitist, and none of them show up on that many pages. I wonder how much their ideas are actually getting used, then. Echolalia as communication gets quite a few pages. So does adults as a cause of emotional dysregulation. Trauma is mentioned. These seem like good things.

After reading the not-chapter things, my bet is on:
"Pulls decent to good ideas from autistic adults and repackages them to be palatable for a wider (parent-centric) audience, but chooses autistic adults who are white, middle to upper class, and usually aspie elitist. May or may not cite autistic sources properly, depending on how much he's really pulling from them. Also doesn't follow his own logic of re-interpreting things as not pathological as far as he could."

Part 2 here.


1 When I say aspie elitism, I'm talking about something very like what Mel Baggs means by aspie supremacy, but without needing the claim that the “aspies” are better than the neurotypical people – it's just about the relationship based on perceived/assumed place within the autistic spectrum that isn't actually linear anyways.

2 This tells me Dr. Prizant is quite familiar with the parent and professional perspectives. In the authors note he says he understands and respects “why some adults with autism prefer the label 'autistic.'” Which, I appreciate the gesture, but no. Some autistic adults prefer the label autistic (and some adults with autism prefer the label “with autism,” this one isn't about language per se but respecting identity and choice.) As in, the ones who prefer the label “autistic” should be referred to as “autistic” even if you're going with person-first as your default. Here's hoping he got that right at the specific people level even though he missed it at the group level.

3 Treating disabled people, especially intellectually, developmentally, and cognitively disabled people, as forever-children is a big problem. So is acting like autism is some “new” thing that only affects children because of how new it is, as opposed to something where there are a ton of un- or mis-identified autistic adults running around … and a lot who didn't survive. He does point out in the authors note that things often apply to teens and adults as well, but why not just say "people" when that's the case?

4 Yes, I know people who had speech delays that made them ineligible for the Aspergers diagnosis who got that label anyways because they learned to speak before the evaluation happened. Back in 2012 I saw an Australian study that suggested fully half the people who'd gotten either the Aspergers or the PDD-NOS label actually qualified for “Autistic disorder,” which means their diagnosis was wrong – you weren't supposed to give either of those two when criteria for “Autistic disorder” were met. And a lot of these incorrect labels? Are because people falsely assume average or higher performance on IQ tests and language tests implies Aspergers. 1) This is a pet peeve and Dr. Prizant just hit it with his description of who'll get referred to with Aspergers. 2) If anyone knows the formal citation so I can point at it instead of just “I remember seeing” that would be great.

5 I use AAC part time, and sometimes write about doing so. Also, Typed Words, Loud Voices exists.

6 I've got a whole “Problem with Autism Speaks” tag on my blog for a reason, folks. Sam Harvey's masters thesis also discusses some … issues with their rhetoric and the results.

7 Link is to a picture of the scar. Check the description and the comments of the photo from the story.