Monday, June 27, 2016

NeuroTribes:The Legacy of Autism and the Future of Neurodiversity, by Steve Silberman (author), William Hughes (narrator)

Blackstone Audio, August 2015

Autism used to be considered a very rare condition, and one that was basically a death sentence for living a normal life. Parents were told to just institutionalize their autistic children and forget them. Now, autistic people are everywhere, and we all know someone who is autistic, has Asperger's Syndrome, or is "on the spectrum."

Silberman looks at how we got here from there, and makes a very lively, interesting story of it. We start with the story of Henry Cavendish, a British physicist and chemist, or in the language of the day, a natural philosopher, of the 18th century. He did extremely important scientific givwork, made major breakthroughs, and showed many behavior patterns and traits in keeping with the contemporary conception of what autistic people are like, not the earlier conception of them as doomed to nothing better than institutionalization.
Silberman gives us, in a lively, conversational style, the stories of researchers, their research, and autistic children and adults,a s well as their families.For many decades, the medical profession had nothing to offer, no  "next steps" for parents after telling them their children were autistic, other than recommending institutionalization. Even when, in the 1960s, many parent sof autistic children found the recommendations and pronouncements unhelpful, distressing, or clearly wrong. Many could see that their children were, in fact, quite bright, that they had communication difficulties but were interested in the world around them and, in their own atypical ways, really trying to connect and communicate.

"Holding therapy" seemed to many to be emotionally abusive, Early forms of behavior modification for autistic children relied heavily on punishment, even though that was directly contrary to B.F. Skinner's findings on what worked well for modifying behavior in useful ways. And when parents themselves became researchers in pursuit of better understanding and care for their own children, while they had an insight and practical orientation more detached researchers often lacked, they by the same token also lacked objectivity, and compromised good scientific practice out of a need to believe their children were "improving."

One of the most pernicious myths was that autism needed to be "cured."  Even as more and more autistic children stayed out of institutions and grew up to be functional, if eccentric, adults, sincere and dedicated organizations largely ignored the voices of autistic adults and teenagers.

And yet the more autistic people escaped institutionalization and became functioning adults, especially in such visible ways as being leaders in the tech industry, the harder they were to ignore, and the more, despite everything, they've had an impact on how the world perceives them. And aside from the heavy spectrum of people "on the autism spectrum" in high tech, no one is going to tell Temple Grandin, industrial designer and bestselling author, that she can't speak for herself or doesn't know what she's talking about.

This is a fascinating and well-written book. Highly recommended.

I bought this book.