Neurotribes published and reviewed

September 5, 2015 7:58 AM

Steve Silberman's new book Neurotribes is out and getting buzzed. Reviewed at New York Times. Reviewed on NPR. Author interview on Erik Davis Expanding Mind podcast. If you are new at metafilter you might be interested to know that Silberman is also known as digaman at metafilter, although his last comment is from October 2012. The book is a greatly expanded version of his work on autism which has previously appeared in Wired as a number of articles including The Geek Syndrome.
posted by bukvich (27 comments total)

I'm still here! I dropped away from MeFi for a few years to do all the research necessary to write this book. Thanks for posting. Loved doing the interview with Erik Davis, and of course talking to Terry Gross on Fresh Air was a thrill. A couple of other helpful links: The deep backstory on the writing of the book, via the Guardian. The Atlantic's Elon Green on how my book corrects long-standing errors in autism history. Vox's Dylan Matthews -- who is on the spectrum himself -- wrote a great piece on some of the dark secrets of autism's past that I uncovered, and the Economist focused on that "horrible history" too. The book is currently a New York Times bestseller, hooray. Thanks again for posting.
posted by digaman at 8:35 AM on September 5, 2015 [61 favorites]

BuzzFeed also excerpted a section of the book about the late neurologist-author Oliver Sacks, who wrote the foreword for the book, and how he first encountered autism. I miss that guy.
posted by digaman at 8:43 AM on September 5, 2015 [9 favorites]

The book looks wonderful and I'm excited especially for my wife to read it, as I think it will help her understand her father much better. So happy for your success with this, Steve! (And you were very engaging on Fresh Air, too.)
posted by LooseFilter at 9:03 AM on September 5, 2015 [2 favorites]

Thanks, LooseFilter!
posted by digaman at 9:07 AM on September 5, 2015 [1 favorite]

> And you were very engaging on Fresh Air, too.

Yes, my wife and I loved that interview—I'd forgotten you were a MeFite!
posted by languagehat at 9:14 AM on September 5, 2015 [3 favorites]

I listened to the Fresh Air interview last week during my long commute to pick up my recently-diagnosed-as-Austistic son from yet another middle school we're trying to see if he can tolerate. It was fascinating, but it made me so sad. I hadn't known about the horrifying situation that motivated Asperger to describe children as "high functioning" in an effort to save them from the Nazi's eugenics program. I was crying in the car; I can't imagine how much worse it would be reading through extensive historical documents from that time.

I also was motivated to read more about "refrigerator mother" theories, and I'm so glad I hadn't heard about these earlier. My son is - I'm not sure of the wording to use, anymore, but he would have been described as having Aspergers a few years ago* - and while my experiences are not at all akin to those of parents who have a non-communicative child, raising him has always seemed to involve more frustration and isolation than what I saw with my other friends. Please don't misunderstand: being his mother is rewarding - I wouldn't trade him for anything - but it's challenging because he's frequently distressed and can't always explain to me what's wrong. The early years were intensely exhausting. He was always upset, overstimulated, and uncomfortable, and to hear that a prevailing theory used to be (and still is) that he was that way because I was too remote? I'm furious on behalf of myself, but so much more so on behalf of those parents whose children are severely affected by autism. Just - fuck!

*I apologize if any of the terms I'm using are offensive to anyone on the autism spectrum. I'm still trying to educate myself, but given that Autism Speaks is always at the top of my search results, I'm still trying to determine how to find valid sources of information. This interview helped me understand that the reasons behind the changing terminology had an extremely valid rationale, and did not just exist to make my life difficult. It goes without saying that I'm buying the book. Thank you.
posted by bibliowench at 9:23 AM on September 5, 2015 [13 favorites]

tyler cowen was critical...
posted by kliuless at 9:28 AM on September 5, 2015

I understand, bibliowench. I put together a list of other books that might be helpful to parents. I very highly recommend "Thinking Person's Guide to Autism" and Barry Prizant's new "Uniquely Human." Best of luck to you and your son.
posted by digaman at 9:30 AM on September 5, 2015 [4 favorites]

Yes, Tyler Cowen was critical, and I answered him in comments. Please read those too. He also implied that only autism newbies see the book in a positive light, which leaves out, oh, say, Temple Grandin, Oliver Sacks, Uta Frith (the brilliant cognitive psychologist who translated Hans Asperger's paper for the world), Saskia Baron (autism documentarian whose father helped launch the autism parenting movement in the UK), John Elder Robison (autistic author of numerous books including the NYT bestseller "Look Me in the Eye"), and many others.
posted by digaman at 9:35 AM on September 5, 2015 [1 favorite]

Let the book speak for itself, Steve. It's obviously capable of standing on its own, and I think you do neither it nor yourself any favors by answering each and every critical comment. (I say this as a writer who's very much had to get over my own thin skin.)
posted by adamgreenfield at 10:01 AM on September 5, 2015 [2 favorites]

Good advice!
posted by digaman at 10:03 AM on September 5, 2015

digaman, if you don't mind being put on the spot (and please feel free to disregard this if you do) I wanted to ask a question. I am reading the book now and loving how well-researched it is; thank you! I was wondering, though, if there was a reason why you don't talk much about women and girls with autism (as a group; many specific women and girls are mentioned) and whether they're underdiagnosed. I noticed that the longest discussion of gender and autism was about femininity in boys.
posted by thetortoise at 10:18 AM on September 5, 2015 [1 favorite]

thetortoise, I definitely think women and girls are underdiagnosed now and have been for decades -- which is why I talk about that very serious problem in the book. What I could not do was go into the deep past and find many case histories of autistic women (other than the ones I did find and talk about), because the diagnosis was so rarely given to girls (adults weren't even on clinicians' radar in America until the 1980s, which is one of the main themes of the book).
posted by digaman at 10:29 AM on September 5, 2015 [5 favorites]

Ah, I must not have read to that part yet. I went through the index and couldn't find anything. I am glad to hear it's in there. Thanks for replying!
posted by thetortoise at 10:33 AM on September 5, 2015

thetortoise, one way in which I dealt with that very daunting problem is that, in the few situations in which case histories of girls from the past were available (as in Kanner's original group of patients), I focused on them, and on what happened to them.
posted by digaman at 10:53 AM on September 5, 2015

I did notice that there are a number of case studies covered in the book that I haven't read about anywhere else and really appreciated the inclusion. This is the first time I've read a book on ASD that takes a strong neurodiversity/social model of disability approach to the subject while backing it up with thorough research into its history. As an autistic person, I'm pleased to have a resource to point people to that isn't dotted with outdated information and weird prejudices. It's the rare book on autism (along with Temple Grandin's and Tony Attwood's books) that I intend to keep on my bookshelf.
posted by thetortoise at 11:20 AM on September 5, 2015 [5 favorites]

Thanks much. Yes, I uncovered many case studies that had fallen through the cracks of history and were very illuminating.
posted by digaman at 1:16 PM on September 5, 2015

I wish I could read the book .. I've been following the reviews and heard part of the NPR-Fresh Air interview. As the parent of a child with autism it's just too raw and difficult. But I am endlessly grateful to you, Steve, for your very important research and for your obvious and clear compassion. And, I feel quite privileged to be able to say "thank you" to you through Metafilter.
posted by Kangaroo at 1:45 PM on September 5, 2015 [5 favorites]

How has the reception been from the anti-vaxxers? The diagnostic criteria change leading to an "epidemic" you discussed on Fresh Air was fantastic. I think that will do more to calm people's fears than all the antivaxx debunking in the world.
posted by benzenedream at 1:48 PM on September 5, 2015 [1 favorite]

The Association for the Severely Handicapped is organizing a group reading and discussion of the book starting the third week in September. Info at this link.
posted by bukvich at 6:13 PM on September 5, 2015 [1 favorite]

Thanks, bukvich. I'm so happy that TASH is doing that, and the page they built is wonderful.
posted by digaman at 6:25 PM on September 5, 2015

He was also on Inquiring Minds (I heard it today!) with some lovely conversation between himself and Indre Viskontas about Sacks. I always kind of wanted to meet Sacks - he wrote once that he modeled his case studies on ones he read when he went through school and he lamented a loss of the art. There is a real craft in capturing the details of a person so that they coalesce in the mind in their living form.

There was an interesting subtext to the conversation about the myths we make in our mind about people we meet through their work versus people we know as people, and how the former can lead to discomfort for the target of that sort of limited-scope adoration. I've been thinking about that a lot with the accelerated rate at which people are displaying consumable Personae as a function of blogs and social media, and how that alters how we interact with each other, and also in the context of fame where one can simultaneously be a fan and have fans and how that distorts our view of ourselves and others. The surprise people had at Sacks being awkward socially outside of the context of being a clinician reminded me of that - we get an image of someone, and when the reality doesn't match it can be jarring for everyone involved.

I'm looking forward to reading this. I worked with autistic teenagers in a B-Mod context, and it was seriously not my milieu (I'm of the Jungian bent; CBT and I have a contentious relationship, though I love a lot about it) and this seems much more in the patient-centered direction I trend towards.
posted by Deoridhe at 7:55 PM on September 5, 2015 [6 favorites]

Many many years back when I didn't have an account yet I emailed digaman and he commented something on my behalf. It blew my mind how cool that was of him and I'm so buying a copy of the book (not for that reason alone though, it's interesting)!
posted by yoHighness at 5:45 AM on September 7, 2015 [1 favorite]

Seems like a good place to leave this:

Diocese of Oxford's guidelines
posted by PMdixon at 10:30 AM on September 7, 2015 [7 favorites]

Wow, PMDixon, that is an amazingly wise document!
posted by digaman at 10:41 AM on September 7, 2015

I enjoyed this book a great deal. In particular, I found the discussion of the impact of Nazi politics on scientific research and the divergence of theories by different research schools absolutely fascinating. It was also gratifying to read a balanced and fairly nonjudgmental view of the neurodiversity movement. And furthermore, the narrative style is very sophisticated as well--it could easily have been just a catalog of case studies, but in fact, all of the different threads of research streamline together in an exceptionally graceful manner.
posted by epanalepsis at 12:41 PM on September 8, 2015 [3 favorites]

Thank you, epanalepsis!
posted by digaman at 11:49 AM on September 9, 2015