September 15, 2015

Thoughts on NeuroTribes

Posted in Uncategorized tagged , , , , , at 11:29 pm by chavisory

I wasn’t going to write a formal review of Steve Silberman’s NeuroTribes, because plenty of other people have done so admirably, but I finished reading today, and I just wanted to casually share a few things that struck me….

-The extent to which WWII and the rise of the Nazis shaped the personal history and viewpoints of so many of the early pioneers in recognizing autism: Asperger, Kanner, the Frankls, Bettelheim.  And the extent to which some of these people who had suffered horribly or lost family to the Nazi regime reacted so…counterintuitively… to the issue of autism, taking the route not of “these people are misunderstood and being treated unfairly,” but “this thing that we don’t understand, we have to stamp it out.”  Who saw what virulent xenophobia can do, who were themselves some of its victims, and yet who largely revisited it upon several generations of autistic kids.

I could almost read a whole other book just exploring the impact of WWII on the lives and thinking of the major players in the early history of autism’s recognition.

-The extent to which so many of these early prominent experts were making shit up.  So little interpretation of autistic traits or interiority or experience is substantiated by evidence as opposed to shoehorned into personal theories.  The extent to which so many things that people have thought they knew about autism over the years were just what some semi-professional like Rimland or Bettelheim decided about whatever their own pet theory was.   Like Rimland’s writing that real autistic people never spun or toe-walked and always had savant skills….

-And the extent to which personal agendas or personal ambitions shaped what so many of these people said about autism.  Kanner trying to play both sides of the field regarding whether autism was an inborn genetic feature, or inculcated by bad parenting, for instance.  Public opinion about autism and the fate of autistic people often come off as pawns in these self-appointed experts’ personal quests.  

-I did not expect to wind up so upset with Lorna Wing.  Her “parents won’t accept having a child with autism, but they’ll accept having a child with this interesting new syndrome!” line of reasoning regarding Asperger’s Syndrome….has really left us in a mess.  Even more than Asperger’s emphasizing the strengths over the disabilities of his clinic patients in attempting to safeguard their lives, this rationale would seem to have established and perpetuated this binary, divisive thinking in a lot of the parent-advocate world that Asperger’s Syndrome isn’t real autism, that “ultra high-functioning aspies” have a totally different condition than what their severely-affected, “classically autistic” children have, that acceptance and accommodation might be fine for people with Asperger’s Syndrome, but their children with “severe” autism need a cure, etc.

-There are multiple stories of parents being told that their infant child was mentally r*tarded, and that being taken at face value.  How did it come to be believed that was a thing you could even know about an infant?

-I think that this book is best considered not as a comprehensive history of autism or autistic people, or of autism as experienced by autistic people.  This book is laying out a really specific thesis about how what we think we know about autism came to be, and how professional and popular knowledge of autism has been distorted by that history.  It’s a modern history of how the personhood of autistic people has been libeled in the interest of certain ideologies and professional ambitions and how that is just starting to be undone.

And so, it’s not that I don’t share frustrations over lack of portrayal of autistic women and people of color (and also of rural autistic people, autistic people in the arts and humanities rather than STEM fields, queer autistic people, etc.), but knowledge of those people’s lives, too, is a casualty of the history of how and why people thought about autism, of the racism and sexism of those professionals and of the times in which they popularized their own views, and of a lot of the stereotypes and prejudices that they’ve left us with, and not simply a weakness of the book.

NeuroTribes is not a perfect book or a flawlessly comprehensive book, but it is a deeply necessary book.  I have seen other criticism that the stories and perspectives of autistic people ourselves seem to take a backseat for much of the book compared to the stories of professionals and researchers.  And I found that true, to an extent.  NeuroTribes is not the chronicle of autistic people and autistic culture that we still need and want, but I think that it stands a good chance of helping pave the way for those stories to gain more widespread acceptance.  It has been too easy for any substantial work by autistic people about autism to be written off as the perspective of only the token, exceptional, “very high functioning.”  Or of the supposedly very rare non-verbal person who finds a method of communication and turns out to actually have a profoundly articulate “intact mind” after all.  It’s been so easy to marginalize autistic narratives this way precisely because of the history of distortion at the hands of professionals we’ve been saddled with.  This isn’t the history of autistic people and autistic experience that we want; this is a history of our sidelining from our own lives and histories that helps begin to set the record straight about how that happened.  It’s a course correction, not a conclusion.

Anyway, consider this an open thread–I’d love to hear your thoughts.

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16 Comments »

  1. I want to agree with this: This book is laying out a really specific thesis about how what we think we know about autism came to be, and how professional and popular knowledge of autism has been distorted by that history. It’s a modern history of how the personhood of autistic people has been libeled in the interest of certain ideologies and professional ambitions and how that is just starting to be undone.
    My feeling is that it could have used a better title to illustrate its purpose. I agree with some of the criticisms about the book’s limitations, but agree as well that what’s left is a strong and “deeply necessary book”. Thank you for your review!

  2. stimmycat said,

    One thing I didn’t like about the book was that Silberman talked about Asperger’s syndrome but didn’t state the actual, totally arbitrary difference between it and the rest of the spectrum, and sort of implied that Asperger’s is a meaningful category for people who talk a lot about their quirky STEM interests or something. (I think the book talked about quirky STEM genius-ness too much in general.)

    I thought it was good that he included that Lorna Wing quote about Asperger’s being a way to avoid the stigma associated with autism because it proves that Asperger’s is and always has been autism for when people don’t want to use the word ‘autism’.

    But overall it’s a fascinating, really important book.

  3. I agree with this review. 🙂 And thanks for writing it. Beautifully said.

  4. Mary Kay said,

    Thank you for your thoughtful review. I have not read the book yet but listened to an interview with the author on NPR a couple of weeks ago. I, too, was struck by the manner in which people’s careers and professional egotism shaped our perspective of autism. WWII was devasting to all peoples with disabilities, a fact that is often disregarded when discussing the genocide that occurred in Europe.

  5. Insightful Judy Endow. Thank you for sharing your thoughts.I agree an important book.

  6. Ivanova Smith said,

    also I feel the cultural and detailed history of autistic people should be researched and written by autistic people we write our own history.

  7. Lori D. said,

    Thank you so much for writing your review. I have a great deal of trouble digesting information–not from a factual point but to understand the bigger picture. You have helped me grasp something that would have taken weeks of reflection and confusion. ❤ to you!

  8. Thanks for pointing out some facets of the book that others have not. I had a similar reaction to yours, heightened by the fact that my father was a psychiatrist and psychoanalyst beginning in the 1960s. Another issue for me was that the book’s evolution probably didn’t need to be quite so transparent, that the Silicon Valley part, the original article, could have been left behind, and the book could have started with Cavendish or even Asperger, but that is more a lamentation of current approaches to book editing than anything, of pushing a book to fill a perceived niche by virtue of being the closest thing we have to that niche, or of seeking to leverage Mr. Silberman’s day job to boost sales. Any such concerns are balanced by Silberman’s sincere drive to find it all and lay it out there in an approachable manner. I must confess that, in my own experience and given the misinformed climate of the time, Lorna Wing’s “gateway diagnosis” concept probably helped me as a parent come to grips with what I observed in my son, or in any event functioned that way, and if that makes me lamentably defensive and self-referential, then I plead human as charged. I do believe that sufficient focus on the individual child renders much of that concern moot and is more relevant to public advocacy. Regardless, in the end, any book that facilitates this much discussion across communities has done a wonderful service.

  9. Rachel said,

    I was shocked by all the pseudoscience (as you said “making shit up”) and the consequences that resulted. I feel so let down by pseudoscience and how easily people believe in it on so many levels.

    All those references to “feeble mindedness” and “retardation” and should be “institutionalised” and aversive “therapies” and the horrific experimentation on disabled people. As soon as people begin using language to dehumanise “empty shell” and even not “normal” etc. we are clearly in dangerous territory because it allows people to justify doing horrific things to others. I can’t come to grips with being mourned for either.mIf we are dead they can do anything to us.

    As you suggest, we have a long way to go and many more diverse stories to tell (with a greater volume of respectfuI dialogue). I hope that neurotypical people are equally horrified by the language society used and continues to use about us because I assume that is the point of exposing the reader to so much of it. It was a hard read for me.

    Thanks for encouraging discussion because after reading that massive book I felt I needed to share and hear what others had to say about it too.

  10. […] Chavisory’s Notebook: “NeuroTribes is not a perfect book or a flawlessly comprehensive book, but it is a deeply nece… […]

  11. thebearpelt said,

    This was an interesting read, but as an autistic Jewish woman myself, I found your second paragraph to be incredibly offensive. My people were not slaughtered so that we could “learn our lesson,” as it were. The Holocaust was not some sort of lesson being taught to MY people. The phrasing and the comparison are incredibly anti-Semitic and I’m really disappointed to see this written here like this.

    • chavisory said,

      ????

      That’s not what I believe and that’s not what I said.

      Of course the slaughter of the Holocaust didn’t occur for anyone to “learn their lesson.”

      What I am saying is that, for people who had a close and first-hand experience with the lethal xenophobia of the Nazi regime (which extended to, indeed started with, disabled people), many of the professionals profiled in NeuroTribes proceeded to treat their own disabled patients in ways that were deeply regrettable.

  12. […] by Chavisory […]

  13. […] had settled in the United States, and Leo Kanner chose to ignore his works. And strangely – Chavisory has mentioned this – for a group of people that had felt the effects of the Nazis and how they treated people, these […]


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