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_NeuroTribes_, Steve Silberman

Subtitled: The Legacy of Autism and the Future of Neurodiversity
Published by Avery (yeah, I had no association with them either; before Penguin bought them they published crap like _Why Sharks Don't Get Cancer_, one of those things that as soon as you see the title and realize it isn't a humor book makes you go, d'oh, because of course sharks _do_ get cancer)

If you've been reading popular articles about autism over the last couple decades, you've probably read at least one by Silberman, likely this one:

http://www.wired.com/2001/12/aspergers/

In the years between when this was published and when Silberman's new book has come ought, Silberman's understanding of the history of the various names that autism has traveled under has evolved substantially. Most important of all Silberman now understands that the increase in diagnoses is not a cause for alarm. He said this, in 2001: "Rates of both classic autism and Asperger's syndrome are going up all over the world, which is certainly cause for alarm" -- but now he knows better. In _NeuroTribes_, he carefully maps out how the DSM editions over the years communicated different understandings of autism. He argues that Kanner not only set a ludicrously high diagnostic threshold for autism, creating enormous confusion, but he also points out that Bettelheim had a lot of help from Kanner in creating the myth of the refrigerator parent and creating a social environment that favored taking people with autism and autism like conditions out of their homes where they might have eventually thrived, and institutionalizing them, where they had an alarming tendency to regress and die.

Silberman also spends a lot of time exploring why Asperger's understanding of the autism spectrum (a beautiful term created by Lorna Wing) failed to transition to the United States from WW2 Vienna. He cogently argues that Kanner knew about Asperger's work (he employed some of Asperger's coworkers) and carefully made sure that no one else had any awareness of it. Kanner liked a good story, and a rare disorder made for a better story than a ludicrously common one.

Like many journalists, Silberman has written a book that reads more like a series of articles than something structured as a book. There's the section about WW2 Nazism. There's the stuff about movies about autism. There's all that awfulness around Lovaas (complete with the airport Rentboy fiasco with Rekers). There's a really incredible development of Rimland, who I had not previously known about. And if you are looking for a thesis, well, that subtitle does nothing to help you find one.

But it's a really good book and definitely worth the time. I was particularly happy to read Silberman's version of how Wrong Planet came into existence (I love Wrong Planet. I don't spend a ton of time on it, but whenever I'm feeling particularly alone and like no one understands me, I go over there and I remember, oh, yeah. Right. These Are My People.). While the idea that people diagnosed with autism tend to have parents and grandparents with significant technical acumen is ever present throughout the book, Silberman spent less time on the Are All Computer People Autistic question than I would have expected. It's hard to tell whether he's trying to stay away from a live wire or just figures it would be flagellating a deceased equine. He does spend a lot of time throughout the book showing how people who probably were on the spectrum invented large chunks of modern science and technology, and how networked mobile devices have made it the world a lot friendlier to many people with communication idiosyncrasies.

If your connection to autism involves comorbidity with Downs or Fragile X, you will be _severely_ disappointed by this book. Sorry! It's a bummer that Silberman spent zero time on that aspect of the spectrum.

There are much better book reviews of this book out there. Here is one:

http://www.forbes.com/sites/emilywillingham/2015/08/28/neurotribes-review-and-an-interview-with-author-steve-silberman/

(The link internally to the original publication on PLOS generated a 404 when I followed it.)

This book review is by someone who knows the author, and the second have of the review is an interview with Silberman. Some of that discussion really clarifies why, even in 2015, the coverage of women with autism in _NeuroTribes_ is so limited. (Honestly, hating on Clara is particularly ridiculous. "Hyper neurotypical"? How is that not a red flag right there?)

Here is an article that suggests autism in the Curie family:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC539373/

"As well as these three I believe there are other scientists who may have been Asperger people, including Marie Curie and her elder daughter the atomic physicist Irène Joliot-Curie, also the theoretical physicist Paul Dirac."

I would also offer up women like Jane Addams (altho it has been so ludicrously difficult to get people to even accept the obvious fact of her same-sex attraction and relationship, I have little hope that we're gonna get anyone on board with the she was on the spectrum proposition), Clara Barton, Maria Mitchell ... basically, if you can think of a woman who made an early and substantial dent in science or some other technical field, and that woman had a childhood characterized by extreme shyness/timidity and/or in later life wound up bucking enormous societal pressure to support an important and unpopular political change, I think you've got a woman on the spectrum with a spectacularly high IQ. And I don't quite understand why we can't see that.

But I'm increasingly optimistic that someday, we will.

ETA: I keep forgetting that my husband suggested I add Lise Meitner. He is, of course, entirely correct.

Comments

( 8 comments — Leave a comment )
rolandgo
Nov. 21st, 2015 11:35 pm (UTC)
Has Bettelheim been completely discredited yet?

And looking at Lise Meitner's bio convinces me that she fits your pattern for Autism in girls/women.
walkitout
Nov. 22nd, 2015 12:07 am (UTC)
Yes, Bettelheim has been discredited
He still has some fans, but everyone now feels compelled to somehow justify him, because of his increasingly well-documented misrepresentations and misdeeds.
ethelmay
Nov. 23rd, 2015 10:49 pm (UTC)
Re: Yes, Bettelheim has been discredited
I remember my mother saying bitter things about the refrigerator mother stuff, long before the most damaging things about BB's life came out (I think that mostly happened after his death, which was after hers).
walkitout
Nov. 23rd, 2015 11:50 pm (UTC)
Re: Yes, Bettelheim has been discredited
I wish I'd known your mother. She sounds like such a wonderful person.
ethelmay
Nov. 24th, 2015 10:44 pm (UTC)
Re: Yes, Bettelheim has been discredited
You would have liked each other, for sure. Admittedly I'm biased.

I always forget how late Bettelheim's influence went -- I think of it as 1950s thinking, along with all the other cherchez-la-mere stuff, and the refrigerator mother thing did start then, but it was really at its height in the early 1960s. So Mom was getting hit with it when my brother D. (the one who shook three cribs apart as a baby) was little. It was all the more unfair as D. got, if anything, more affection lavished on him as they were so happy to have another baby after our brother J.'s death (J. was born with a heart defect and died at 18 months, at which time Mom was already pregnant with D. and didn't know it yet). Also he was a delightful, if somewhat exhausting, child, and they were thinking of him as the youngest (until I came along, anyway, and even then he and I were "the younger ones").
ethelmay
Nov. 23rd, 2015 10:36 pm (UTC)
While your criteria make a lot more sense than most people's, I am a little leery of historical diagnosis, especially in eras when young women were routinely bullied into being shy whether it was their nature or not (e.g., Eleanor Roosevelt), and every intellectual woman was likely to be described as odd.
walkitout
Nov. 23rd, 2015 11:47 pm (UTC)
bullying and girls on the spectrum
One of the things that really stood out in _Neurotribes_ was just how many clinicians who saw girls who didn't have an obvious cognitive limitation or physical differences but who were subjected to bullying and whose parents had a laundry list of things about the girl(s) that wasn't like other children used _bullying_ by their school mates as sort of the sign/symptom that convinced them they were dealing with a girl with autism/asperger's/name of the day.

I think we as a society have decided that the very high diagnostic threshold of Kanner's Classic Autism prevented huge numbers of children and adults from being able to access services and accommodations that would have made their lives meaningfully better. I think, however, that we have _not_ decided that lowering the diagnostic threshold far enough to capture everyone with spectrum-like characteristics (the "eccentric" end of the spectrum, as described by Lorna Wing and others) is a good idea. I'm a little unclear on _why_ we are so reluctant to do this. To me, it feels like a way of sustaining stigma, of keeping people closeted, of suggesting that you get to pass as "normal" if you aren't _that_ autistic. From my perspective, it makes it way harder to really build a full-fledged community of autistic people at all levels of ability. I believe it is that full range of participants in the community that will enable us to finally end the stigma and create a world with multiple forms of "normal" -- and let us re-stigmatize those foolishly distractible and hyper-social NT types that are the real problem anyway. ;-)
ethelmay
Nov. 24th, 2015 02:59 am (UTC)
Re: bullying and girls on the spectrum
I meant more culturally-sanctioned bullying by parents and other authority figures -- the kind of squashing and silencing that happened to girls regardless of their neurology or personalities. Emotional abuse might be a better term.
( 8 comments — Leave a comment )