On the Reading Table: NeuroTribes by Steve Silberman

Steve Silberman

NeuroTribes:

The Legacy of Autism and the Future of Neurodiversity

A groundbreaking book that upends conventional thinking about autism and suggests a broader model for acceptance, understanding, and full participation in society for people who think differently.

What is autism? A lifelong disability or a naturally occurring form of cognitive difference akin to certain forms of genius? In truth, it is all of these things and more -- and the future of our society depends on our understanding it. Wired reporter Steve Silberman unearths the secret history of autism, long suppressed by the same clinicians who became famous for discovering it, and finds surprising answers to the crucial question of why the number of diagnoses has soared in recent years.

Going back to the earliest days of autism research and chronicling the brave and lonely journey of autistic people and their families through the decades, Silberman provides long-sought solutions to the autism puzzle, while mapping out a path for our society toward a more humane world in which people with learning differences and those who love them have access to the resources they need to live happier, healthier, more secure, and more meaningful lives.

Along the way, he reveals the untold story of Hans Asperger, the father of Asperger’s syndrome, whose “little professors” were targeted by the darkest social-engineering experiment in human history; exposes the covert campaign by child psychiatrist Leo Kanner to suppress knowledge of the autism spectrum for fifty years; and casts light on the growing movement of “neurodiversity” activists seeking respect, support, technological innovation, accommodations in the workplace and in education, and the right to self-determination for those with cognitive differences.

NeuroTribes was the first science book to win the Samuel Johnson Prize. It has also won a California Book Award and a Books for a Better Life Award.

Mini Reviews

“Explores in fascinating, near-encyclopedic depth how autism has evolved… a gripping narrative written with journalistic verve.”
—The Guardian

“An essential resource. My own copy is already dog-eared.”
—Nature

“NeuroTribes is a sweeping and penetrating history, presented with a rare sympathy and sensitivity. It is fascinating reading; it will change how you think of autism, and it belongs, alongside the works of Temple Grandin and Clara Claiborne Park, on the bookshelf of anyone interested in autism and the workings of the human brain.”
— From the foreword by Oliver Sacks, author of An Anthropologist On Mars and Awakenings

“The monks who inscribed beautiful manuscripts during the Middle Ages, Cavendish an 18th century scientist who explained electricity, and many of the geeks in Silicon Valley are all on the autism spectrum. Silberman reviews the history of autism treatments from horrible blaming of parents to the modern positive neurodiversity movement. Essential reading for anyone interested in psychology.”
–Temple Grandin, author of Thinking in Pictures and The Autistic Brain

“NeuroTribes is remarkable. Silberman has done something unique: he’s taken the dense and detailed history of autism and turned the story into a genuine page-turner. The book is sure to stir considerable discussion.”
–John Elder Robison, Neurodiversity Scholar in Residence at The College of William & Mary and author of Look Me in the Eye

“Be prepared to overturn all prior knowledge you had about autism. With meticulous research, Steve Silberman has unearthed the surprising truths about the history of autism, uncovering the roots of the lie of the autism “epidemic.” Be prepared to share the deeply compassionate understanding that the author bestows on the many different individuals we now include in the autism spectrum. His empathy touches even the villains of the story, and this is both moving and apt when he advises us all to embrace diversity. This gripping and heroic tale is a brilliant addition to the history of autism.”
–Uta Frith, Emeritus Professor of Cognitive Development at University College London

“In this genuine page-turner, Steve Silberman reveals the untold history of autism: from persecution to parent-blaming, from Rain Man to vaccines, of doctors for whom professional ego trumped compassion, to forgotten heroes like Hans Asperger, unfairly tainted by Nazi links. It ends on an optimistic note, with ‘autistics’ reclaiming the narrative and defining autism in their terms — more difference than disability and an essential part of the human condition. Highly recommended for anyone with an interest in autism or Asperger’s, or simply a fascination with what makes us tick.”
–Benison O’Reilly, co-author of The Australian Autism Handbook

Tales From the Mang: The Asperger's Test

Over the last 18 months, my psychologist, Dr, R., has floated recurring hints that I might have Asperger's syndrome. Aspeger's or "high functioning autism" is yet another psychological spectrum disorder.

From the Wikipedia, "Asperger syndrome (AS), also known as Asperger's syndrome or Asperger disorder, is an autism spectrum disorder (ASD) that is characterized by significant difficulties in social interaction, alongside restricted and repetitive patterns of behavior and interests.

It differs from other autism spectrum disorders by its relative preservation of linguistic and cognitive development. Although not required for diagnosis, physical clumsiness and atypical use of language are frequently reported.

The syndrome is named after the Austrian pediatrician Hans Asperger who, in 1944, studied and described children in his practice who lacked nonverbal communication skills, demonstrated limited empathy with their peers, and were physically clumsy. The modern conception of Asperger syndrome came into existence in 1981, and went through a period of popularization, becoming standardized as a diagnosis in the early 1990s. Many questions remain about aspects of the disorder. For example, there is doubt about whether it is distinct from high-functioning autism (HFA); partly because of this, its prevalence is not firmly established. It has been proposed that the diagnosis of Asperger's be eliminated, to be replaced by a diagnosis of autism spectrum disorder on a severity scale."

Continuing the Wikiquote, "Many children with AS are initially misdiagnosed with attention-deficit hyperactivity disorder (ADHD). Diagnosing adults is more challenging, as standard diagnostic criteria are designed for children and the expression of AS changes with age; adult diagnosis requires painstaking clinical examination and thorough medical history gained from both the individual and other people who know the person, focusing on childhood behavior. Conditions that must be considered in a differential diagnosis include other ASDs, the schizophrenia spectrum, ADHD, obsessive compulsive disorder, major depressive disorder, semantic pragmatic disorder, nonverbal learning disorder, Tourette syndrome, stereotypic movement disorder, and bipolar disorder."

Now, in my heart, I don't really believe I'm an Aspie, but I've long suspected my older brother, Alfred, could be. How else could he beat me at chess nine billion times? Why else would he floss his teeth in public? But then again, he could simply be an bridge engineer, like he claims to be. So, I agree to take Dr. R.'s assessment test, just to see what's what, and OK, to also have a test on hand to spring on my brother, the next time he comes to town.

Pretty soon, I find I'm answering yes to an awful lot of the tells. I have super-hearing, I hate loud noises, I wear the same style clothes week after week, almost like a uniform. I have an awesome visual memory, and so on. I wasn't expecting this. Uh-oh. To quote Homer Simpson, "D'oh!"

I still don't believe it though, because I'm far too aware of "social cues." When I worked retail in the eighties with four or five managers, I got to where I could smell even the faintest whiff of their latest top-secret management coups a mile away. I was like one of those canaries in the coal mines. Sadly, whenever one of the supreme leaders attained dominance, the others would immediately form a new coalition to overthrow her regime. On, and on, and on the leadership paradigm shifts rock and rolled. Those yentas were a real bad-news gang of retail warlords. It's was all during the lost Cabbage Patch Doll and Tickle Me Elmo decade. Thank God, I finally got out when I switched jobs to become the company courrier.

A must-read, hilarious memoir by an actual Aspie is Look Me in the Eye by John Elder Robison.


 A New York Times Bestseller

“As sweet and funny and sad and true and heartfelt a memoir as one could find.”—from the foreword by Augusten Burroughs

"Ever since he was young, John Robison longed to connect with other people, but by the time he was a teenager, his odd habits—an inclination to blurt out non sequiturs, avoid eye contact, dismantle radios, and dig five-foot holes (and stick his younger brother, Augusten Burroughs, in them)—had earned him the label “social deviant.” It was not until he was forty that he was diagnosed with a form of autism called Asperger’s syndrome. That understanding transformed the way he saw himself—and the world. A born storyteller, Robison has written a moving, darkly funny memoir about a life that has taken him from developing exploding guitars for KISS to building a family of his own. It’s a strange, sly, indelible account—sometimes alien yet always deeply human."

As we go over the test results, Dr. R. waffles a bit in his interpretation, "You might not have Asperger's -- you might just be 'talented.'"

Talented? Are you kidding me?, I think, "Is that a sho' nuff' mental disorder, now? It used to be a point of pride when I went to Roger's Park Elementary School."

When my brother blew into to town this April for an Engineering Conference, I got my chance to pepper him with the Aspie questions. Unperturbed, half-way through the grilling, he interrupts the endless "on a scale of 0-5..."  probes to serve up this joke, "What's the difference between an introverted and an extroverted engineer? An introverted engineer looks at his shoes; an extroverted one looks at your shoes."

Damn -- that's good.