Autism in Heels (O'Toole)

[cahn]

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), 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.

Comments

[mildred_of_midgard]

Yeah, see, I grew up in the South. You did not talk about things like that outright, in front of other people!

But what all this reminds me of are math contest rankings. Because that was interesting!

Ah, that is interesting and makes sense! State contest rankings were one of many accomplishments that got broadcast to all and sundry at my schools, but since contests were only once a year and there were only a few contests, and since only a handful of people from your school would compete in a contest and you never interacted with the people from the other schools, that only gave you a few days' per year worth of bragging time, and only with the few people from your own school who competed. Whereas everyone had grades to talk about, every day, all year. ;)

I didn't mean kid struggles, I meant adult struggles! There is a whole family story with my family, starting with my father's grandmother, who identified education as the way to get out of the horrible living conditions in rural Korea (e.g., no indoor plumbing or electricity, that's just for starters)

Ahhh, yes, that makes sense! And that's the thing: my parents did not see poverty as something to avoid. Homelessness, yes, and education was the key to making sure you didn't starve and could support yourself. But I was getting an education, so they had nothing to worry about! All they cared about was us finishing high school with passing grades, and then maybe getting some kind of post-secondary vocational training or community college if that made sense.

See, my parents (my mother, speaking on behalf of the parental team) gave us long lectures about how rich people aren't any happier, and if you go to someone's house and you see lots of fancy things, they could have bought all that on credit and the bank is about to repossess us, and so forth.

We were told that being a garbage collector was a fine respectable job that would make them proud of us. (And it is and that's good! It's just their particular application of this laudable belief intersected badly with my particular unmet intellectual needs.) Living at home until 30 like my mother did, and getting married and becoming a stay-at-home mom like my mother, totally fine, as long as we had enough education that if our husbands died or left us we could find an emergency job and keep from starving.

My parents were so explicitly anti-classist in so many different aspects of life that it just permeated my entire upbringing, sometimes in surprising ways. My wife and I talk about this sometimes.

Perhaps the most surprising knock-on effect of my anti-classist or reverse-classist upbringing: it took me until I was 25, staying at a friend's house (which as I'm sure you can guess, almost never happened), to get a shampoo that kept my scalp from itching. Because I had been told that paying more for more expensive products was a waste of money that people did just for conspicuous consumption class status symbol reasons (not in those words, but that's what the lecture meant).

When I complained about my scalp itching, my mother said that was because I had gotten my hair used to being washed every day, and I should only wash it every other day. I said I couldn't, because I was going crazy scratching by the end of each day and wouldn't last a second day. She shrugged at me.

Stayed at a friend's house while attending a conference in grad school, used what she had, realized to my shock that my hair was not only shinier/healthier looking the next day, but it was not! itching! anymore. I then decided that no matter what my mother said, paying $3/bottle instead of $1/bottle was worth it for me. (Even though I felt bad because I wasn't just paying a little more, I was paying three times as much! Which felt borderline immoral and was definitely something I felt defensive about.) That was also a huge eye-opener in which I discovered that sometimes if you pay more, you do get better results.

There is a whole family story with my family, starting with my father's grandmother, who identified education as the way to get out of the horrible living conditions in rural Korea (e.g., no indoor plumbing or electricity, that's just for starters)

So my parents grew up with plumbing and electricity, but my mother's parents did not. They grew up in rural areas, poor in different ways. And my mother always talked about how my grandfather's mother sewed their underwear out of flour sacks, and she would go to the river to do their laundry and have it hanging out on the line by the time the sun came up, and such stories of farm/ranch life in the early twentieth century. And she talked about how her father and his family didn't feel poor, because all their neighbors lived exactly the same way, and since they grew their own food (and weren't like in the Dust Bowl), they always had enough to eat and didn't even notice the Great Depression.

There's a country music song that goes, "Well, somebody told us Wall Street fell, But we were so poor that we couldn't tell," and everytime I hear that, I think, "Hey, that's Grandpa's childhood!"

My grandmother grew up in a more varied poor childhood, born in a log cabin and then moved to different small towns as her mother found work to support them, and they might have had more electricity at different times, but she also didn't have enough to eat. Like at one point there was nothing in the house to eat but popcorn, and she had to see a doctor for digestive issues (probably hunger/malnourishment).

And so the only thing my parents cared about was whether you had a roof and food! Everything else was a luxury, and you better not act like it was anything other than a luxury.

Why wouldn't they do all they could to help their one kid who had a chance of getting out to a better life to do so??

As far as I can tell, they literally considered it immoral to divert resources from other children to the one child who was already going to be self-supporting. It would have been a waste of resources.

It was interesting because they were stuck with an either-or situation at one point:

- 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.

- One child is pretty certain to end up independent, and even successful beyond the wildest dreams of anyone in your family, no matter what you do.

And to my parents, the dead obvious choice is to throw body and soul into the tiiiiiny chance of finding *some* treatment that might help the first child become independent.

Right as we moved to Arizona and my parents were faced with a choice between a school system that would be good for my brother and good for my sister, one of my teachers apparently (according to my mother) told them they didn't need to worry about my education, as I was already on top of it.

I FELT SO BETRAYED. I liked that teacher!

So my parents explicitly told me that, since they agreed with that teacher, they were picking a school district with a decent elementary special education program at the cost of me going to a high school that was primarily training the future farmers of America. All I had to do and all they had to make sure I did was stay in school and make passing grades until I graduated. At which point I would be on my own and could do what I wanted.

I was a solved problem in their mind, and all my insisting I wasn't a solved problem was just ingratitude and undeserved accusations of inadequate parenting.

It didn't always need to be as either-or as my parents made it, there was a lot of anxiety playing into their refusal to put in more effort for me* than they already were, but the school district choice was an either-or, and their values made it clear to them that choosing me would be a waste of resources because I was a solved problem.

* I've said this before, and I'll say it again: this was not avoiding work. This was avoiding scary things, because the motivation to face the fear of the unfamiliar wasn't strong enough. In my brother's case, the motivation was strong enough, so they did all kinds of work. And when neither the process nor the need for it was unfamiliar to my parents, like calling to get school records transfered to keep me from repeating classes I'd already taken, they did the work. Not repeating classes you had already passed: something my parents saw as familiar and understood why it was necessary! Skipping classes when you could just take them like everyone else, or taking extra classes: not something my parents understood why it was necessary, because they never did it nor did anyone else they knew.

I think the difference between my parents and yours is that they both see education as key to success, but because mine see survival as the goal and yours see upward mobility and outperforming the average as the goal, and mine see poverty as a perfectly fine situation and yours don't, my parents' idea of the necessary amount of education is"average amount", and your parents' idea of the necessary amount is "as much as humanly possible."

And that's related to why your parents supported your education on the one hand, but on the other were extremely invested in certain outcomes for you and hostile when you had goals that didn't match theirs, and mine were accepting of whatever goals I chose and whatever outcomes I got, but saw investing too much in them as a waste of resources.

my mom fought for me a lot, but she was also fighting for herself because any glory that came to me also reflected on her.

Yeah, mine came from a family where any of my mother's success was shot down immediately because it made *her* mother look bad, and then my mother and I got into a dynamic where my obnoxiousness (which was driven by my need to fight for my needs) about my success made *her* feel bad about my success, so...yeah. Not like your family.

In contrast, I'm sure a child as disabled as my brother would have made your mother feel he reflected badly on her, but not mine! She was more emotionally comfortable with a special needs disabled child with an obvious medical diagnosis than a special needs overachiever child who was constantly demanding that her parents do more. I've posted before (second half of this one) about how I think my parents were more mentally prepared for and thus more emotionally comfortable with my one sister's out-of-control disobedience and my other sister's normal disobedience than my pathologically obedient and obnoxiously argumentative self! One was "Well, kids do wrong things, being a good parent is teaching them and being patient," and one was "Kid is not doing wrong things and saying WE'RE doing wrong things??! NO! We're not bad parents!"

(You know, when I finish my dad's memoirs -- hopefully this summer -- I'll just send them to you and then you'll understand exactly where he was coming from.)

Yes, please do! As noted, I've read a bunch of memoirs about growing up in North Korea, including during the 1990s famine, so I have an idea of how bad it can be, but I have no idea about South Korea. I'm super curious about your father's experience.

(My dad's father worked in a steel mill, his mother worked in an office, his brother was not quite as disabled as mine, but still living at home and heavily medicated. The whole idea of a mother who worked was prevented to me as a perfectly valid life choice, but a super unusual one. Especially since she was the grandmother I had virtually no contact with. In being a woman with a career, I was basically trailblazing in my family. Especially as my sister had no career ambitions either and promptly got pregnant at 16.)

I've noticed most USians don't have the (very common Asian) idea that one's family is all in this together

Indeed, and my family is especially good at breaking up into splinter groups every generation, even beyond the usual American individualism. (Usually you have a dysfunctional family that gets together at the holidays and then remembers how dysfunctional they are. You don't just cut each other off promptly and permanently, which is my family's tradition.)

[mildred_of_midgard]

- 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.

[cahn]

(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'd really be interested in knowing more about this, especially this part: what makes sense and what are the flaws and the problems in the traditional method that you've seen. (I am a bit haunted by the idea that we might in fact have gotten a low-functioning ASD child, and I know that my kids have a better than average chance of having a low-functioning ASD child, which I know is still probably quite low-probability, but...)

Is the "traditional approach" ABA? And what book is this?

[mildred_of_midgard]

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!

[cahn]

Thank you, this sounds extremely fascinating and I think I should read this and get back to you :D Random and somewhat tangential thought I had:

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.)

I read a little about this, and with the caveat that this is based on my reading a couple of necessarily shallow articles, what it reminded me of (to a much different degree, of course) is my kids' head of school, who generally speaking has been a good head of school. Two years ago her husband died in a car accident -- they were both young, and had a 4-year-old kid. (The news article said he swerved into the path of an oncoming truck, so it seems like there's a good chance it might have been either suicide or drug involvement, which if true adds another aspect of horribleness to the whole thing, but that part is totally speculation.) Just a terrible trauma and she abruptly became a single mother, and either of those things separately would have been awful, much less together! And... the last two years, well, have also been not great for schools in general because of *waves hand at world*, it's been really hard to find teachers, and all the staff at this tiny school, especially the head, have been filling in gaps where needed... and with all of this, parents (including me) have gotten kind of frustrated with a lot of things that have been going poorly or not being taken care of at the school. And there have even been several incidents where the head of school seemed very much like she was being hostile to the parent she was talking to. I mean, it's also absolutely the case that I'm getting all this from the parent point of view (the school admin does not talk about it, which of course is the right choice) which is of course going to be biased, but I've got enough data points now that I don't think bias is all of it, and I think some pretty egregious mistakes were made when dealing with families (though not, I think, anything egregious with the students).

Now, what happened in this case is that this particular person saw that it was too much for her and she is transitioning out to another career, and she worked with the director to hire another head of school that they feel really good about, and we're getting a new head of school next year. But if you were sufficiently attached to the bonobos/students you were working with, and convinced no one but you was going to treat them well, but also under a lot of stress and possibly effectively working two jobs because there was not enough funding / not enough teachers -- yeah, I can see how you might forget or cut corners and even do things that might physically endanger your subjects, while still having nothing but their best interests at heart and even perhaps remaining being the best for them in many other ways.

(I'm kind of horrified though by Savage-Rumbaugh's successors giving up on all the communication stuff, which it seems like they mostly have -- to me that seems like talking to a toddler and then just saying, "well nope! you can only play with other toddlers now, not ever communicate with an adult." 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!)

(Also AGH PROBABILITY! This will have to stand in for a much longer rant/comment :) )

[mildred_of_midgard]

(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?

[mildred_of_midgard]

my parents were faced with a choice between a school system that would be good for my brother and good for my sister

Argh, that sentence came out entirely wrong. A school system that would be good for my brother and a school system that would be good for ME. My sister was determined to fail school no matter what. :P

[cahn]

See, my parents (my mother, speaking on behalf of the parental team) gave us long lectures about how rich people aren't any happier

My parents: Well, we don't actually believe that, but supposing that's true, wouldn't you rather be a rich unhappy person than a poor unhappy person?
(I got this lecture a lot when I was thinking I might go into academia.)

- 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.

- One child is pretty certain to end up independent, and even successful beyond the wildest dreams of anyone in your family, no matter what you do.

And to my parents, the dead obvious choice is to throw body and soul into the tiiiiiny chance of finding *some* treatment that might help the first child become independent.

My parents would a) absolutely have made the opposite choice, but probably with b) also the absolute imperative that the successful child would be financially and logistically responsible for the dependent child to the extent that they (my parents) were unable to do so. (I mean, I should append that they would have tried, and probably succeeded, to set things up so that the successful child would not in fact have too much burden on this point. They're really good about stuff like that.) Both of which sound incredibly foreign to your parents!

In contrast, I'm sure a child as disabled as my brother would have made your mother feel he reflected badly on her

DING! YEP. I'm really glad they didn't have an intellectually disabled child, because WOW that kid would have had a super tough time. I mean, my sister and I consider ourselves verbally and emotionally abused to a certain degree (to be fair, a degree that wouldn't have registered as anything too out of the ordinary in the 80's, and definitely not as much as you were, but also to a degree that wouldn't fly these days for sure); I can't imagine what an actually intellectually disabled child would have gone through.