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Neurotribes, Steve Silberman - manjushra
manjushra
manjushra
Neurotribes, Steve Silberman

It opens with the story of Henry Cavendish and his notable eccentricities. He was enormously weird and also, non-coincidentally, a genius of his time. He was intensely focussed on his science and just would not give up on his experiments – especially one to measure the density of the Earth. But put him in a room full of people, and he couldn’t bear it. To have one single person even interrupt his nightly perambulation on Wandsworth Common was unbearable to him.

“Few Nobel laureates of either gender have much resembled the Renaissance idea of the Uomo Universale – the suave and supremely well-rounded human being equally accomplished in the rigors of the lab, the aesthetics of the atelier, and the art of scintillating conversation. Instead they have tended to be persnickety oddballs in ill-tailored suits, sensible dresses, and rumpled cardigans, ruling deep domains of expertise with slide rules and unwavering commitments to accuracy.”

To balance this, we have many stories of modern day families and their stories of how their children grew and developed and changed. Heart-rending anecdotes of how parents would go to any lengths to cure their kids of autism (strange food regimes, multi-vits, new drugs, ECT), to get back the happy, verbal toddler who had been as if stolen away by a Grimm creature.

It’s a difficult book in many places because the history of research into and treatments surrounding autism is in itself grim reading, full of bad science and charlatans and desperate hopefulness. The two lead scientists are Asperger and Kanner, working in parallel on opposite sides of the world, Asperger (Vienna)  desperately trying to play down the challenges and emphasis the strange giftings in autistic patients, in order to save them from extermination by the Nazi regime, Kanner (US) building on the Asperger research (without publicly crediting it!) but really only interested in achieving a cure within the short developmental window in a young child’s life. These are the main reasons why Asperger is associated with high-functioning patients of all ages, and Kanner (and his “autistic” label) with young patients with greater impairment.

My jaw dropped at the description of how Kanner assumed that parents were to blame for their children’s condition, based on the blithe unscientific premise that all his patients’ parents (like, all 10 of them) were working professionals who used the services of nannies. Of course they were working parents, how else would they be able to afford his services?! I mean, duh.

There’s huge detail on “the Autism Wars” wrt the vaccine controversy, and more on how the film “Rain Man” was conceived, developed and what it did for public awareness of and positivity towards the autistic community.

As a doorstopper of a book, I can’t hope to do it justice here, except to say that it was immensely readable, full of real-life anecdotes with a huge heart for the families and people affected. The main point that I take away with me is about NeuroDiversity. His final chapter concentrates on the work of activists who want to remove the shame and stigma from the autism label, and to concentrate on how to live with the challenges of the condition while celebrating the gifts and distinctiveness that it brings.

“Just how handicapping the limitations of disability become depends either on how well the environment is adapted to the range of the people who use it, or on the opportunities they have had to learn to cope with it, or both.” (Shearer, Disability Whose Handicap?)

(Ne’eman) “it struck him that many of his difficulties were not “symptoms” of his autism, but problems built into the ways that society treats people who don’t meet the standard expectations of “Normal”’

“Autism is not a single unified entity but a cluster of underlying conditions. These conditions produce a distinctive constellation of behaviour and needs that manifests in different ways at various states of an individual’s development… Most cases of autism are not rooted in rare de novo mutations but in very old genes that are shared widely in the general population while being concentrated more in certain families than others… Neurodiversity advocates propose that instead of viewing this gift as an error of nature, society should regard it as a valuable part of humanity’s genetic legacy while ameliorating the aspects of autism that can be profoundly disabling without adequate forms of support. … Instead of investing millions of dollars a year to uncover the causes… we should be helping autistic people and their families live happier, healthier, more productive and more secure lives in the present.”

From the account of "Leo", an autistic boy in modern-day America, his sister doesn't mind coping with his differences. I can't actually find the quote at the moment but it so stuck in my mind and stayed there, for me to remember whenever I'm feeling a bit ignorant and helpless when I meet neurodiverse people:

“I’m helping him be the best Leo he can be.”

This book has profoundly altered my perception of others and as a side-effect hugely helped my own self-acceptance. So what if I have deep-seated social anxiety? I have other gifts that give me huge enjoyment and satisfaction. I don't have to conform. And neither do my wonderful friends with these conditions. You know who you are.

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Comments
artw From: artw Date: September 1st, 2016 08:30 am (UTC) (Link)
Thanks for this review.
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