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cahn ([personal profile] cahn) wrote2022-06-09 10:08 pm

Autism in Heels (O'Toole)

2/5. This is a rare ranking for me, as usually I don't finish books I dislike. And I would absolutely not have finished this book either had I not been reading it for a friend (who thinks her daughter may be on the spectrum). It's one of those irritating half-memoir-half-pop-nonfiction books. (I first wrote "pop science" but I don't think it rises to that level; O'Toole occasionally cites a paper but it's mostly her pontificating.) I think this book could be reasonably useful for a person with ASD who is exactly like O'Toole, or who has a child with ASD who is exactly like her, but wow am I not that person.

I think if it had just been a straight memoir I would have liked it rather more; the thing that bugged the heck out of me was how I got the distinct impression O'Toole was often making the assumption that her story (which was traumatic in a number of ways, including pronounced bullying, lack of support from parents/teachers/psychiatrists, serious self-esteem problems, sexual abuse, and eating disorders) was the ur-story of every Asperger girl ever. I mean, a lot of the book is in first person plural ("we" are like this and "we" feel that). And I suppose that could be read as shorthand for "many girls could be like this, and you should watch for it," which I think is a really good message -- I had no idea that there was such a large correlation between ASD girls and eating disorders before reading this book -- but that's not the message she actually said. She's at best really sloppy about her pronouns, and I don't mean in the he/she/they sense, but in the I/we sense, often giving the sense that she is assigning all her traumas to all ASD girls ever (and honestly I think she actually believes this). I think if I were a parent reading this book who didn't have marked ASD tendencies myself, I'd be super panicked that my kid was doomed to all these horrible traumas.

(I'm not panicked, because even those of us growing up in the 80's like O'Toole and me weren't necessarily doomed. Like basically everyone else, I found middle school to be horrible, but no more than anyone else really, and had a bout with poor self-esteem/caring too much what other people think in my teens-to-20's (again, as far as I can tell, totally typical) but all things considered I honestly have had a pretty great life. I won't deny that quite a lot of that is probably due in large part to luck (including luck in my family, my personality, and what kinds of lessons I learned earlier than her, and early diverting into math/science, which is much more welcoming of certain types).)

To be honest, I kind of feel like the main point of the book is "let me spew my insecurities at you and assume that you share them," which is not at all my favorite kind of book. And I could have done with way fewer inspirationally-angsty sections where she pontificates about how she gets what it's like to be an autistic woman because we've all had those experiences and feelings! (We have not all had those experiences and feelings.)

I also feel like she is irritatingly prone to ascribe every single thing about her and everything that ever happened to her (particularly if it's bad, or if she has negative feelings about it) to ASD. She's also (by her own admission) extremely smart, and a lot of the stories she tells about "see!! how hard it is to grow up ASD??" I feel could just as well have been told about any smart child with a lot of peers (and a mom) who didn't know how to deal with her. For just one example, there's a story she tells about how she knew that menstruation involved an egg (and not much else), and so she asked her mom if she could see the "period egg," and then apparently to this day feels embarrassed about it, which... uhhh... okay, I'm not exactly NT, but that sounds actually like a really smart question given that she didn't know the egg is a single cell?? And one that any reasonably intelligent child growing up thirty-odd years ago who only knew that might ask??

In another example of how Everything Is ASD, she also blithely claims that her inability to do geometry is because she's autistic, in a passage that is just stunning for its wrongheadedness.

Neurotypical minds (and geometric proofs) work... top-down, based on deductive reasoning, which is usually thought of as a skill that develops without any teaching or training. And for nonspectrum thinkers, that's mostly true. They see a fact -- maybe a facial expression, maybe a social situation -- and easily link it to a clear, logical conclusion. Our spectrum minds operate differently... Generally, we [spectrum minds] understand things, people, ideas -- life -- using inductive reasoning. We go from the bottom-up, starting with specific, concrete experiences, facts, and examples. Then we spot trends, notice patterns, and discover bigger concepts that link it all together.
WHAT
NO
I mean... nothing about this makes any sense at all?? I've never heard of NT people learning social rules via deductive reasoning, or really with a formal reasoning process at all?? And NT minds (generally speaking, of course! and of course I know a lot of exceptions) are famously bad at deductive reasoning and good at (often fallacious) inductive reasoning, and if deductive reasoning is not taught or trained it's because it's kind of hard to do so! I will not go as far as to say that Aspergers minds are deductive reasoning minds -- that would be falling into O'Toole's terrible fallacious generalization habits -- but E's mind, at least, is a deductive reasoning mind; she's always been really good at it, but earlier in her life it was really hard for her to reason inductively (it wasn't a rigid rule! she might be wrong!), and this was a big problem for her. (She can do it now, but it's definitely not her most natural mode.) I mean, O'Toole is clearly flamingly bad at deductive reasoning, but I... don't think she can say it's because she's on the spectrum.

In somewhat more shallow news, there's a lot about O'Toole's style that just grates on me, it's very breathless and all over the place and she uses italics like they're going out of style, and she will be making one point and then just start talking about something else, and just keeps going even when she's only talking tangentially about the point that she was making earlier -- well, okay. As you can see, this is the way I naturally write (and speak) myself! (D had to repeatedly ask me, when we dated/married, to add some context/transition words when I completely changed the subject during a conversation, because I was totally not used to doing that.) So I didn't have too much trouble reading it, but I do think that this is what editors (betas, lol) are for, and an editor should have edited the heck out of this and structured it a lot more and taken out a lot of italics. (Okay, I'll... mostly... stop with the italics now. But that is kind of what it felt like.)

As you might have expected from that last paragraph, the book is extremely disorganized, with her flitting from random story to other subject, often without clearly saying what she's talking about. I think she thinks she's being ~genuine~ and ~individualistic~, but really she's mostly being disorganized (which again! I write like this! This review is kind of like that! I get it! But this is why I always go through a bunch of drafts, because being able to communicate with other people is a Thing that is Useful), and an editor should really have gone through this. There's one chapter that's entitled "Predators and Fandom Families," and if you're scratching your head wondering what the connection is and if she's going to talk about, oh, idk, fandom scandals of the past, you would be wrong! She just... decided... she wanted to talk about predatory behavior that happened to her and also about how fandom is nice for ASD kids to meet other people who share interests. In the same chapter. I think the common thread is that... ASD kids want to fit in too?? (E only vaguely wants to fit in, but I certainly did when I was a kid and didn't know how) and that can lead to vulnerability to predators, which happened to her, but also a better solution to this is for them to find fandom "families." I think. Mind you, she never draws these connections very clearly, so you have to kind of infer it from the stream of consciousness.

I'm not sure what her main thesis is given the disorganization, but I think it's that we should ~celebrate~ every individual person as being individual people and each having differences, but also that ASD explains everything about Asperger girls, who are all Exactly Like Her. Yeah. It's kinda inconsistent.

With all that, as I've mentioned in places above, there were bits and pieces here and there where I did find out things I didn't know, or that made me think about things a little differently. ASD kids not being good at context -- I've seen that before, but not phrased quite that way, and, yeah, that's me.
This bit was interesting to me:

For many girls, "showwomanship" [sic] skills far exceed comfort with spontaneous or one-on-one social interaction. Intuitive use of this sidestep around social anxiety can lead to excellence in teaching, narrative presentation, litigation, and performance.

Because, huh. I wouldn't say I had social anxiety exactly, but I have always been much better at performance skills than in social interaction, and I've discovered this late-breaking talent of actually being... quite good at giving talks at church and teaching adults at church. (Not kids; kids are too unpredictable, lol. But adults are reasonably predictable! Also, sadly this doesn't magically make me better at giving talks in general, it's just that I've had more experience in figuring out the specific rules for church talks. And also, this was only once I figured out the rules; I was an extremely terrible teacher the first time they called me to do it, in grad school, to the point where my poor home teachers had to stage an intervention.) E is probably better at performance skills than social interaction, but she doesn't particularly like it.

Also, this passage. She's talking about doing research to figure out what was wrong with her daughter's GI problems (which is a harrowing story of how doctors wouldn't listen to her and thought she was just complaining about "too much laundry," omg -- and again, when she talks about her own experiences, they're often quite compelling!):

Back then, much as later on, I did serious, responsible research and spoke with enough authority that every single physician we met asked if I'd gone to med school. Not rudely. They just figured I must have. Oh, how I wish I'd known to have said, 'No, I'm not an MD. I'm autistic, so I can absorb, retain, and access vast amounts of information. In a way that I've only ever encountered among others on the spectrum, my mind grabs onto something, like a little ankle-biting dog, and until the pieces make sense simply will not let go.'

Okay, uh, aside from the irritating part where, again, the wording implies that she ascribes her ability to absorb information as something that one can do if and only if one is autistic (both sides of which I take issue with), [personal profile] mildred_of_midgard, you know whom I thought of :P

(Also, this is just one two small but super annoying bits: she brings up drapetomania (an 1851 hypothesized mental illness causing enslaved Africans from fleeing plantations, because why else would anyone ever do that??) to (I think, because her writing is super unclear) make the point that doctors don't look at the whole person... and then later talks about and appropriates Sojourner Truth's "Ain't I a woman?" speech (she even uses the word "hijacking"!) to ask why other women drag on her for being (she quotes a critic) "smart, pretty, popular." I don't disagree that she should still be able to talk about her trauma without getting slammed for it even if she is attractive and intelligent! But argh, in a 2018 book about a white upper-middle-class profoundly-gifted ASD woman, I think these particular analogies could 100% have been left out. And yes, I can see that this is not being able to do context/not reading the room/mind-blindness at its peak, but like. Again: Don't you have a NT editor?)

Anyway -- if you can sort of disassociate the interesting and compelling stories she tells from either needing them to have structure or from the extreme tendency to group all ASD girls together, or from the bits which are either offensive or flat-out wrong -- there are some good things here! It's just that, oof.
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[personal profile] mildred_of_midgard 2022-06-28 06:43 pm (UTC)(link)
- One child is almost certain to end up dependent on others, in diapers, unable to speak up or defend himself if he's being abused, for the rest of his life, no matter what you do.

Alas, as I predicted then, no treatment has been found, and he remains dependent and at the mercy of his caretakers.

Sadly, I have since found one treatment that I suspect might help, but the only person I would trust to be able to apply it properly would be me.

If it were just a matter of forwarding the reference to my mother, I would, estrangement or no (I maintain a minimal level of communication for sharing medically necessary information, as you know), but:

1) I don't have a concise explanation, just a book that happens to say somewhere in the middle, "This experimental technique for teaching language that worked for chimps and bonobos had better success with non-verbal low IQ children than other techniques in this one small group that we tried."

2) Implementing the technique requires a level of attention to detail and understanding of the concepts that neither my mother nor the people who've worked with my brother have ever shown any signs of being able to wrap their heads around.

So I'm pretty sure what would happen is that they would do it wrong, *if* they tried it, even if I wrote up a concise step-by-step manual. And even if it were implemented perfectly, there's no guarantee it would work. (It's just that from a methodological standpoint, it makes *so* much sense to me. And it describes the flaws in the traditional method, which is the method that's used with my brothers, and the problems it describes are the same problems I've seen with them! It's frustrating.)

I suppose I could research if there's some professional practicing it, but my impression is that at least when the book was written, there wasn't.

Meh.
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[personal profile] mildred_of_midgard 2022-06-29 12:27 am (UTC)(link)
It's one of my favoritest books! Kanzi: The Ape at the Brink of the Human Mind, reviewed (at length!) here. It's short and easy to read, at least at our levels (my dyslexic mother would struggle, unfortunately).

Caveat, though, that all my praise of the author's treatment of animals in those posts was based on the author's respectful descriptions of how she treated their minds and granted them the status of human children and her descriptions of their interactions. There has since been a huge controversy over her physical neglect and endangerment of them, in which she lost her access to them. Which is hugely disappointing if true. (She rejects the accusations and says the apes are now being treated with no dignity and have reverted to being animals in a zoo again. Both could be true--god knows there are plenty of neglected human children.)

Is the "traditional approach" ABA?

ABA is deeply problematic, but the only aspect addressed by this book (or at least the part I'm talking about) is that the stimulus-response conditioning approach to language used with apes and disabled children does not teach them that language is a symbolic tool for communication if they don't already grasp that. And thus they never do anything that could really be called language. At best, they end up like rats pressing levers to get pellets, and at worst, they end up doing random things that researchers desperately want to find evidence of language use in.

What they *don't* do is initiate communication using language to convey their needs and better their lives. Which, if you think about it All so-called "language" use among these apes is prompted by the researcher, and the subject reacts as they've been trained, if they've been successfully trained (and usually that's not even the case).

And that's exactly where my brothers are. At least one understands and can react to a handful of phrases, less than your average dog. Neither of them initiates it. One initiates communication in different, non-linguistic ways, like bringing his sippy cup to my mother when he wants it filled up. (The other one was only 3 when I went to college, so I have fewer data points. I have no memories of being told he did anything like this, but it might have just flown under my radar.)

What's interesting is that my mother always told us that there was no way to tell if my brothers understood everything they were hearing and were possibly doing advanced physics in their heads, and were just lacking the ability to talk, or if they didn't understand anything, or somewhere in between.

Having seen my one brother's use of his picture board, and having read this book, I'm now 99% sure communication via language as symbolic vehicle is not taking place, and thus they're not understanding anything either, any better than a dog.

His use of his picture board is totally random as far as I can tell. When he presses buttons and words/phrases come out of the device, my mother struggles to interpret what he's saying. (I think this is equally true of the other brother too.)

You can hypothesize all you want that they're thinking all sorts of things that you and I would think and pressing the buttons that best communicate that--but the button pressing is indistinguishable from random. Commmunication is literally not taking place. There is no evidence that they are using it any differently than they use a toy piano keyboard: press a button, a sound comes out, that's cool.

Here's an example of an exchange with my mother that I witnessed:

My brother: sitting and chilling out at the dinner table, no apparent emotion other than contentment. Pressing buttons on his picture board with no evidence of intent, changing strategies, or frustration that he's not getting through.

Picture board: "Apple."
Mom: I don't have an apple. Do you want a cookie?
Picture board: "School."
Mom: Uh, school is tomorrow. Yes, you'll see your teachers and friends tomorrow.
Picture board: "I'm mad." [Context: when he's frustrated or upset, you know it! He is frequently frustrated or upset precisely because he can't communicate his needs.]
Mom: Are you mad about something? [Highly skeptical.]
Picture board: "Dog." [Context: we have no dog, there is no dog at school, I'm not sure he's seen a dog in 15 years.]
Mom: Okay, I think you're just playing with that. Or if you're not, I'm sorry, I can't figure out what you're trying to tell me.

Any scientist would have to say that this behavior shows no evidence of being statistically significantly distinguishable from the null hypothesis of random button-pressing.

And the fact that the method in the book was successfully used to take intellectually disabled children/teenagers from exactly that level, to using language for its actual purposes, makes me think that this technique is the one thing that has a chance of getting my brothers to understand what communication is for and use it to better their lives.

If we were on speaking terms and they were still in school, I would ask to go to an IEP meeting and present the technique and see if I got any signs that anyone grasped the difference between "language as symbolic vehicle for communication" and "stimulus-response" well enough to implement the plan correctly. Or at least someone who understood which parts of the plan were important enough that they can't be deviated from for it to still be the same plan that does the right thing.

Unfortunately, understanding why this technique works the way it does requires a lot more technical understanding than the collaborate problem-solving approach in Lost at School, which is why I can rec the one book to anyone and everyone and the other one I kind of sigh and am not optimistic about. It took me a fair bit of college-level linguistic and philosophical education to get to the point where I could grasp the concepts involved; high school me would not have, I'm pretty sure. And I am 99% sure if I tried to explain the plan to my mother, she would be convinced that she understood it and wouldn't.

Tangent: I understand why she wants to believe her children understand everything that's being said to them, but this is the same woman who decided that an infant got upset when her brothers started fighting because they were breaking the rules. The infant does not understand the rules! She's either scared, or she's upset because she wanted peace and quiet and they were disturbing her rest.

She would also dramatically overestimate my nephew's cognitive skills. Now, he's a sharp kid! But no, at the age of three, he could not compensate for my sister's educational neglect by memorizing a Dr. Seuss book that I read to him once on one of my visits, and then reading it to himself subsequently. He couldn't remember a word from one page to the next. (I tried the whole-word method that my mother tried with me, but his patience was less and I only had the one visit. Mom had far more time with young me!)

I know that my kids have a better than average chance of having a low-functioning ASD child

Yeah. :/

Just from anecdata, my Dad's side looks like this:

Dad: high-functioning ASD.
His two sons: extremely low-functioning ASD.
His brother: somewhere in the middle.

Perfect illustration:

Dad: Salts his own food.
My brothers: There's no point in giving them a salt shaker, they wouldn't do what to do with it or why.
My dad's brother: Can salt his own food, but his mother has to tell him when to stop.

My sister who died, the only one of the daughters who was Dad's and therefore might carry that gene, would have been advised not to have children, according to my mother.

Oh, speaking of that, and speaking of things that are too difficult for the average person to grasp and apply, my parents saw a professional about whether to have another child after the last one turned out so disabled. They were told that the odds of having one low-functioning autistic children were small, and the odds of having two were *even* smaller, and they already had one, so the chances of having a second one were vanishingly small!

Leaving aside the fact that the genetic component was unknown then, I'm sure you can see the problem. Even if those are independent probabilities, once you've had the first child, the odds of having a second one are the same as having the first one! That's the gambler's fallacy. I accepted this logic when I was thirteen and my mother was pregnant, but I grew up to go, "...Wait a minute." I would be amazed that a genetic consultant (I hope it was just a regular MD or even PA, but still) was giving this advice, but the MIT-hosted web page that went up about Boston weather after the big Snowpocalypse of 2015 said that our chances of having a second snow season like that in the near future was vanishingly small, because we'd already had one!

Leaving aside the fact that these are dependent probabilities, because CLIMATE is a thing, omfg, even if they were independent, that's the gambler's fallacy again!

I remember ranting to my wife about this one when we found it. MIT! I ask you!
Edited (Rephrase for accuracy) 2022-07-05 19:11 (UTC)
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[personal profile] mildred_of_midgard 2022-07-09 05:21 am (UTC)(link)
(I'm kind of horrified though by Savage-Rumbaugh's successors giving up on all the communication stuff

I know, I had the same reaction!

I realize that's very anthrocentric and possibly a bit condescending of me, but... I mean... it's one thing for bonobos in the wild, it's another for bonobos that have been learning all this stuff!)

Well, if S-R can be trusted, I think Kanzi would agree, based on this one anecdote she told about him! In a different book, I think. Anyway, she and his other caretakers once decided to take him camping in the Georgia woods, thinking that, as a bonobo, he would be down with that. Much to their surprise, he had fun exploring, but when it came time for bed, he was *not* cool with sleeping outdoors. He kept insisting that it was time to go back home, where he could follow his usual bedtime routine of watching his favorite TV programs and ordering room service with his pictureboard.

Lol at the Westernized bonobo!

My wife, not a fan of roughing it, wholeheartedly agrees. Why would you sleep outdoors when you could be comfortable in your own bed with your yarn and your audiobooks?