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.

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.

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.

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.

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.