Monday, December 14, 2015

NeuroTribes, by Steve Silberman

Autism.  Sometimes it seems like no one really knows what that word means.  Even among medical professionals, that word has so much vagueness and leeway that it sometimes seems like it can include just about anyone with some sort of abnormal behavior.  In NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, Steve Silberman may not answer all the questions about autism, but the questions are there and he provides plenty of fodder for discussion.

In terms of a percentage of content, the majority of NeuroTribes concentrates on the Legacy part of the subtitle.  Acknowledging that autism as a medical or psychological diagnosis is a relatively recent phenomenon, Silberman looks at historical figures and records, describing some individuals who, if they lived today, would most certainly be considered autistic.  History buffs will enjoy reading about Asperger, Kanner, and other pioneers who first developed the idea of autism as a unique diagnosis.

Sadly, for most of our history, many people we now see as autistic would have been thrown down a well, ostracized, left to die, or, for the lucky few, institutionalized.  Silberman recounts the history of abuse that autistic individuals have suffered (and more recently that we would like to admit).  Similarly, he traces the shift in the perception of autism, to "viewing it as a lifelong disability that deserves support, rather than as a disease of children that can be cured."  Some of the "treatments" that medical professionals used to try to "cure" children of autism are truly barbaric and unconscionable.  I know hindsight is 20/20, but it's hard to imagine what some of those folks were thinking. . . .

Two major issues Silberman discussed were, I thought, left without a satisfactory resolution.  First, the question of a relationship of autism and vaccines.  In my limited reading, it seems as if the medical community has pretty well debunked the notion that vaccines, specifically the preservatives in particular vaccines, cause autism.  Silberman clearly rejects that notion as well.  However, he offers enough anecdotal evidence of the connection that it seems there are still some legitimate concerns.  I am not a psychologist, psychiatrist, or neurologist, just a casual reader, but I have some sympathy with those parents who report drastic changes in their children immediately after receiving a vaccine.  Their experiences cannot be rejected out of hand.

The second issue that I wondered about is the enormous growth in diagnoses of autism.  As awareness grew, and especially as autism was described in the DSM (Diagnostic and Statistical Manual of Mental Disorders, the Bible of the psychiatric profession), it raised the question as to whether there were more cases of autism, or simply that they now had a name and psychiatrists were putting the name to work.  Some studies showed that the DSM "trigger[ed] a significant rise in diagnoses."  They found that "awareness of autism among professionals was dramatically increasing at the same time that the boundaries of the condition were expanded.  The new numbers reflected the estimates realigning themselves with the reality of the spectrum."

So is there some evolutionary change leading more and more individuals to have autism?  Are factors in the environment or toxins in vaccines or other man-made factors leading to more occurrences of autism?  Are there really more people with autism, or is autism simply being more widely recognized?  These questions don't have easy answers.  They might not have hard answers.  Silberman doesn't have the answers.  But they are interesting questions to contemplate.

Whatever the case, autistic individuals are becoming better and better at navigating the wider world.  Starting with ham radio, then with the advent of computer bulletin boards and now with the various ways the internet allows people to network and create virtual community, autistic people are more connected and empowered than ever.  Technology has been a huge boost for their opportunities for employment and learning.  In fact, they themselves have developed much of that technology!

Silberman features people like Temple Grandin, perhaps the most famous autistic person to date, to demonstrate that the possibilities for autistic people to have productive lives, impacting their chosen fields and the world, are limitless.  Parents of children with autism and adults with autism still have battles to fight, and public perception is still sometimes an obstacle.  NeuroTribes gives reason for hope.  Those of use who might be considered "neurotypical" must recognize the growing neurodiversity around us and appreciate the contributions those who are not neurotypical make to society.

Thanks to NetGalley and the publisher for the complimentary electronic review copy!

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