September 15, 2015
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.
September 1, 2015
Almost time to bid farewell to a long, weird, wonderful summer.