NeuroTribes E-Book

Steve Silberman

• Herausgeber: Allen & Unwin
• Kategorie: Fachliteratur
• Sprache: Englisch

Seitenzahl: 1010

Veröffentlichungsjahr: 2017

Beschreibung

Winner of the Samuel Johnson Prize for Non-Fiction Shortlisted for the Wellcome Book Prize Shortlisted for the MJA Health Book of the Year Award Shortlisted for the BMA Medical Book Awards A Sunday Times and New York Times bestseller Foreword by Oliver Sacks What is autism: a devastating developmental condition, 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. Following on from his groundbreaking article 'The Geek Syndrome', 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 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 casting light on the growing movement of 'neurodiversity' and mapping out a path towards a more humane world for people with learning differences.

Leseprobe

PRAISE FOR NEUROTRIBES:

‘A tour de force of archival, journalistic and scientific research’ Judges, Samuel Johnson Prize

‘Explores in fascinating, near-encyclopedic depth how autism has evolved . . . a gripping narrative written with journalistic verve’ Guardian

‘Stunning . . . Highly original . . . Outstanding’ Spectator, Books of the Year

‘NeuroTribes is deeply felt . . . This work stands alongside Andrew Solomon’s Far from the Tree’ The Times, Books of the Year

‘A sprawling and fascinating dissection of the role autism has played in shaping human history’ Daily Telegraph, Books of the Year

‘Powerful, authoritative . . . This is a significant book . . . He tells his story with a potent mixture of conviction and deep knowledge’ Sunday Times, Books of the Year

‘Whatever the future of autism . . . Mr Silberman has surely written the definitive book about its past’ The Economist, Books of the Year

‘Few other books on the subject provide such a rich amalgam of social history and contemporary reportage’ Financial Times

‘This gripping and heroic tale is a brilliant addition to the history of autism’ Uta Frith, professor emeritus of cognitive development at University College, London

Steve Silberman was an award-winning science writer whose articles appeared in Wired, the New York Times, the New Yorker, the Financial Times, the Boston Globe, the MIT Technology Review, Nature, Salon and many other publications. NeuroTribes became a widely-praised bestseller in the United States and the United Kingdom, and won the 2015 Samuel Johnson prize for non-fiction, a California Book Award and a Books for a Better Life award. It was chosen as one of the Best Books of 2015 by the New York Times, the Economist, the Financial Times, the Boston Globe, the Independent and many other publications, and has been translated into 15 languages.

In April 2016, Silberman gave the keynote speech at the United Nations for World Autism Awareness Day. He gave talks on the history of autism at Yale, Harvard, MIT, Oxford, the National Academy of Sciences, Queen Mary University, Apple, Microsoft, Google, the 92nd Street Y, Imperial College London, the MIND Institute at UC Davis and many other major institutions. His TED talk, The Forgotten History of Autism, has been viewed more than two million times and translated into 25 languages. He lived with his husband Keith in San Francisco until his death in August 2024.

NEUROTRIBES

Hans Asperger and children at the University of Vienna, 1930s.

First published in the United States in 2015 by Avery, an imprint and division of Penguin Random House LLC, New York

This paperback edition first published in Great Britain in 2016 by Allen & Unwin, an imprint of Atlantic Books Ltd.

A portion of the introduction, ‘Beyond the Geek Syndrome,’ appeared in a different form in Wired magazine.

Photograph of Dr. Hans Asperger is courtesy of Dr. Maria Asperger Felder.

Copyright © Steve Silberman, 2015, 2016

Foreword copyright © John Elder Robison, 2025

The moral right of Steve Silberman to be identified as the author of this work has been asserted by him in accordance with the Copyright, Designs and Patents Act of 1988.

All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, without the prior permission of both the copyright owner and the above publisher of the book.

Every effort has been made to trace or contact all copyright-holders. The publishers will be pleased to make good any omissions or rectify any mistakes brought to their attention at the earliest opportunity.

No part of this book may be used in any manner in the learning, training or development of generative artificial intelligence technologies (including but not limited to machine learning models and large language models (LLMs)), whether by data scraping, data mining or use in any way to create or form a part of data sets or in any other way.

Neither the publisher nor the author is engaged in rendering professional advice or services to the individual reader. The ideas, procedures and suggestions contained in this book are not intended as a substitute for consulting with your doctor. All matters regarding your health require medical supervision. Neither the author nor the publisher shall be liable or responsible for any loss or damage allegedly arising from any information or suggestion in this book.

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A CIP record for this book is available from the British Library.

Paperback ISBN 978 1 76011 364 3

E-book ISBN 978 1 92557 550 7

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For Keith Karraker

Contents

Foreword by John Elder Robison

Original Foreword by Oliver Sacks

Introduction: Beyond the Geek Syndrome

1. THE WIZARD OF CLAPHAM COMMON

2. THE BOY WHO LOVES GREEN STRAWS

3. WHAT SISTER VIKTORINE KNEW

4. FASCINATING PECULIARITIES

5. THE INVENTION OF TOXIC PARENTING

6. PRINCES OF THE AIR

7. FIGHTING THE MONSTER

8. NATURE’S SMUDGED LINES

9. THE RAIN MAN EFFECT

10. PANDORA’S BOX

11. IN AUTISTIC SPACE

12. BUILDING THE ENTERPRISE: DESIGNS FOR A NEURODIVERSE WORLD

Epilogue: The Mayor of Kensington

Afterword

Acknowledgments

Notes

Index

Foreword

TENTH ANNIVERSARY

As I write this foreword in the spring of 2025, it’s hard to believe ten years have passed since the publication of Steve Silberman’s NeuroTribes. For me, it’s also sad to remember it’s almost a year that Steve’s been gone. It seems like yesterday that we were having breakfast on a warm summer morning in Boulder, Colorado, looking up at the mountains and wondering what came next for us and for the neurodiversity movement we both championed. In those days, I often felt like we’d been on the road forever, talking about autism’s future, and I know Steve felt the same. The last time we were together was a few years later in Orlando, Florida, at the final autism conference before the pandemic shut everything down. Looking at a photo from that day I realized you never know when you’re seeing someone for the last time.

When it came out, NeuroTribes was hailed as a history of autism, but it’s more than that. Previous histories lionized clinicians and parents who faced what they called a horrible disorder while describing the many ways autistic people were broken. In sharp contrast, Steve’s book looked at autism through the lens of neurodiversity, where we all are completely correct humans, just as we are. This book is a great triumph, though it has always been controversial. Critics were quick to accuse Steve of minimizing the most disabling aspects of autism. Others took issue with Steve’s dramatic writing style, where characters competed for the roles of heroes and villains.

When it came to significantly disabled autistics, Steve introduced us to Leo Rosa, the boy who loved green straws. Leo is an example of nonspeaking autism and higher support needs—as well as an example of what life can be like for an autistic person who needs 24/7 support when a family tries to understand and accommodate them, and give them the best life possible. What Steve didn’t describe so much were the times Leo became overwhelmed and could be a danger to himself or others, because Steve felt it was a violation of Leo’s privacy and disrespectful to portray him that way, and I agree with that.

Some parents and professionals took issue with Steve’s brighter depiction of autism and neurodiversity, probably because they are not autistic and don’t share that perspective. As an autistic person, I’d rather read this than the dark side because I already live that enough. Plenty of other books have made much of those issues in graphic detail, and if I were one of the unhappy autistics described, I’d have found those characterizations humiliating; I don’t need to read more of them here.

I respected the dissenting views, but I was willing to set them aside for something more powerful, which is the way this book celebrates autistic people and the neurodiversity community we evolved in response to a world that saw us as defective versions of some idealized normal. While Steve never felt the ridicule I and others did as autistic children, he certainly had his share of bullying and ridicule as a gay man coming of age in the seventies.

In one of our last conversations, Steve said (as he often did), “I can’t speak for autistic people because I’m a neurotypical guy.” To which I replied, “I don’t think so . . . what is being gay but a different way of seeing in the brain? Your body isn’t different. You don’t choose to be this way; it’s your natural way of being. Isn’t that just like autism or ADHD, another invisible difference, another expression of neurodiversity?” We talked for hours but never settled that question. Surely, tomorrow’s scholars will have something to add.

Sometimes, a dramatic interpretation makes for a better story than just the facts, ma’am, and that is the case here. Steve kicked open a hornet’s nest with his story of Georg Frankl, the doctor who left Nazi Germany and the University of Vienna in 1938 for Johns Hopkins in America, thereby establishing the missing link between Hans Asperger in occupied Austria and Leo Kanner in Baltimore. Steve thought he’d found a conspiracy, where I believed it was a love affair, but who can really know what went on behind closed doors eighty-some years ago?

Ever since this book came out, scholars have searched for the ultimate truths about who thought and did what in those days and the decades hence, and there are at least twenty scholarly papers inspired by Steve’s work, mine included, with more surely to come. When you read this book, and something on the pages hits you, take a break to do some research. You will be fascinated by what you find. I guarantee it.

But enough of the present, for the moment. Allow me to step back in time twenty-five years, when I was an autistic man coming to grips with a midlife diagnosis that seemed to explain the failures and successes in my life. That same fall, Steve was a writer reporting on a Geek Cruise with a bunch of engineers off the Gulf of Alaska. Both of us—unbeknownst to each other—were circling an as-yet-unnamed definition for what made us—and the geeks—different and also special.

I saw myself as a geek, but not a successful one like the people on the cruise. In the three years since my autism diagnosis, I had come to understand that it was my different brain that helped me succeed in technology work on the East Coast. Still, without any community support, I couldn’t keep a job, so I now worked for myself. It wasn’t my dream, but it was enough to get by.

Steve was on the cruise to cover the geek scene for Wired magazine, exploring the idea that Silicon Valley technologists were somehow different from other people. As he got to know the geeks on the boat, he was struck by how many of them had autistic children, and some were reflecting that they, too, might be autistic. In that, the geeks on the boat and I had one thing in common: we were worried about our children, and it was the thing that made us successful that had us scared for the next generation.

In San Francisco, California, and Amherst, Massachusetts, Steve and I each dived down the autism rabbit hole. Both of us found our way to what was then a new book—Asperger’s Syndrome—by an Australian psychologist named Tony Attwood. At the time, autism was seen as a terrifying cognitive disability, and people were saying the newly named Asperger’s Syndrome was a milder form of the same thing. It was part of a spectrum with “classical” autism at one end and Asperger’s Syndrome at the other.

Attwood’s book described that autism spectrum, including this quote from Dr. Asperger—“It seems that for success in science or art, a dash of autism is essential.” Steve and I were both fascinated by that line, which supposedly dated to 1943, long before any of us were born. After the cruise, Steve visited some of the people he’d met at their homes. When he saw the eccentric and successful parents and their quirky children, the words sure seemed true. When Steve and I met some years later, those memories remained fresh in his mind.

Researchers had long believed autism has a substantial inherited component. Some philosophers in the community made an interesting suggestion: If autistic people were born different, then their “different” behavior is their normal. To an autistic, it is nonautistic behavior that seems strange and inexplicable. In the lexicon of medicine, those behaviors represented phenotypes. Steve liked that idea.

A phenotype is the observable set of behaviors of an organism. Yellow and green peas are examples of two different phenotypes. Phenotypes are driven by an organism’s genotype—its genetic makeup—while being influenced by the environment. Those environmental differences were said to explain how twins with the same genetic makeup nonetheless sometimes developed markedly different traits.

Since autism, Asperger’s, and “non-autism” were clearly different traits, and all those differences sprang from the brain, some began suggesting a different word applied here: neurotype—the term for one’s brain type.

Wired published Steve’s story as “The Geek Syndrome” in December of 2001. In it, he posited that the autistic phenotype was nothing new. Rather, the rise of tech companies in Silicon Valley had attracted large numbers of autistic men and women and the result was a surge in autistic children in those communities. This, he wrote, was what evolutionary psychologists called assortative mating.

Steve had come to agree strongly with Asperger’s observation that autistic traits conferred exceptional gifts on some folks he saw, even as others—often their children—seemed profoundly disabled. He interviewed a number of researchers and clinicians for the story, and their thoughts seemed to affirm his thinking. Back in Amherst, people had told me I was gifted, but my son was ten years old before he learned to read, and I’d been terrified after doctors said that might never happen.

I read Steve’s article with considerable interest and considered my son’s mom, my late first wife, Mary. A few years later, she would be diagnosed with autism too. We both worried about our son but had new hope because, seemingly out of nowhere, he developed a fully formed ability to read shortly before Steve’s article appeared. When that happened, I rejoiced, and I knew he would be all right. Different like me, but still okay.

It made me sad to read Steve’s words about the community around Silicon Valley, knowing there was no such community around us in rural Massachusetts. It would be another six years before that changed with the release of my first book on life with autism—Look Me in the Eye.

When my book came out in 2007, Random House sent me around the country on a promotional tour, and I visited several bookstores in the San Francisco area. That brought Steve and me together in person for the first time, where I learned he retained his fascination with geeks and autism. He was still thinking about that article, how our understanding of autism was developing, and how that deserved a book.

My West Coast appearances also connected me with people Steve had written about, and I got to know them. I found myself drawn into a broader discussion on autism, much the same as Steve was when his story was published. In Washington, D.C., I met autism experts from schools and government agencies, both of whom wanted my thoughts. At the urging of Tom Insel, then the director of the National Institute of Mental Health, I agreed to offer my autistic perspective to our government, who sought advice on which research proposals would be useful to people like me and which questions autistic people wanted answered. I dove headlong into autism science, where I encountered Steve once again.

He had been fascinated by the people he’d met in the autism community, and as a science writer, he was struck by the contrast between legitimate science, which said autism was a longstanding part of the human genome, and a vocal group of dissenters who believed autism was a man-made condition caused by poisoning from lead, mercury, or rogue vaccines. He was wrestling with the ideas that would become NeuroTribes.

Meanwhile, I was receiving regular invitations to speak before autism societies, schools, and universities. I found myself meeting countless autistic people and their families and saw the breadth of the autism spectrum through actual people. I saw firsthand the range of needs and the disparate opinions held by parents of autistic kids. As an autistic person, I knew that I was born the way I am, and the suggestion that I was a product—as some people actually told me—of a Big Pharma conspiracy was insulting and hurtful.

Steve saw the same thing, and felt that was a new and unhelpful way of thinking. He also spoke movingly about some of the harsh treatments that he’d learned about from older autistic people. The worst was lifetime institutionalization, which was common until the 1970s. And we both agreed present-day bullying of autistics was almost as bad.

Steve knew firsthand the sting of mocking, and he saw autistic people experience that same thing thanks to our different behaviors. On a brighter note, he saw young autistics writing about the idea that neurological diversity—neurodiversity—was as much a part of human diversity as tall and short people were. They were expressing—for themselves—that idea that we are our normal. Whatever our neurotype, we deserve the same human rights and respect as anyone else. Steve loved that.

He became fascinated by the idea of an autistic neurotype—a distinct autistic brain type—and he wondered how far that idea reached. Back in 2001, in the Wired article, he’d written about the overlap of ADHD, dyslexia, and other neurological differences in the geek community. If so, he thought, it wasn’t an autistic neurotype. It was bigger than that. What should it be called? No one had that answer, but the factions were certainly strident in their opinions, and that gave Steve the title for the book he would write: NeuroTribes.

When Steve wrote “The Geek Syndrome,” his article’s title came from the medical community. There, Asperger’s was a syndrome, and autism was a disorder. Medical professionals focused on the deficits and disabilities of autistic people to the point where our exceptionalities were either totally overlooked or dismissed with comments like “One in a million are like him; the rest are hopelessly disabled.”

I encountered that myself when I spoke in public. Some angry parents challenged me, saying I was obviously not disabled, while their child had “real autism.” It’s as if we had a contest where the most disabled person won, but they had no way to see into me, and like many autistics, my disability was largely invisible. Yet I participated in numerous studies exploring what is and isn’t autism over the years, and clinicians in those universities consistently determined that I was and remain autistic.

Most interestingly, the biological studies I took part in showed that genetic differences that made me autistic were also present in autistics who were much more visibly disabled than me, and I came to know families where children born of the same parents had strikingly different outcomes from the same gene pools. Today I see that in my own family.

In the years between the Wired article and the release of NeuroTribes, it became increasingly clear to me—and to a good many autism researchers—that tribe was a good word for our communities, and neurotype fit many of us better than syndrome. Steve saw the same thing. All tribes include people with different abilities. One foundational trait of many tribes—observable in humans, our chimp relatives, and other species—is how we look out for our young, disabled, and old.

In my public advocacy, I began speaking about how autistic people had a moral duty to look out for other autistic people who were less able to advocate for themselves. At events where Steve and I both appeared, Steve would often say he didn’t feel comfortable speaking for autistic people because he was not autistic, but his book made him a friend of many in the community just the same.

In talking about “the community,” I should point out that there is not one coherent community; there are several, and at times, they seem to be at each other’s throats. Much disagreement is based on the tremendous diversity of the autistic population. There was a time when scientists believed autism was a one-in-one-thousand disorder, and almost all autistics were nonspeaking and intellectually disabled.

Today, we see the fuller breadth of the autism spectrum, and we recognize that more autistics have few obvious manifestations of disability, and can describe their own experiences, whereas nonspeaking autistics often have parent advocates—though increasingly, nonspeaking autistic people are also having their own say through alternative methods like typing or communication apps. Intellectually gifted autistics naturally see the world very differently from parents of autistics who cannot advocate for themselves, though more of those parents are learning from the insights of those autistics who can describe autistic experiences like sensory issues, stimming, and processing delays.

Since NeuroTribes appeared, a movement has begun to separate more obviously disabled autism from autism as it’s manifested in people like me. I agree that we may look strikingly different, but the idea of calling us two groups stands on shaky biological grounds. In my own family, I have cousins who are nonspeaking and intellectually disabled, sharing most of my genetic material, and the genetic studies I’ve taken part in show some of the genes that contribute to making me autistic are also present in some members of that most disabled group. The percentage of overlap is presently unknown, but the occurrence of extreme disability side by side with great giftedness is well-known in neurodivergent families.

Given our limited knowledge, suggesting we are in different groups does not feel right to me, though I acknowledge that others disagree. That said, science may help us identify different population subgroups. People now talk about the idea of “many autisms” because there are many biological differences that result in one behavioral diagnosis. But in the future, any difference that can be diagnosed through biology would likely have its own name since it would no longer be diagnosed by behavioral observation. It would be like comparing a person’s blood type to their personality type—one is based on a lab test repeatable anywhere, while the other is an opinion, and opinions vary.

That was something Steve and I talked about a good bit, along with how that kind of research can lead to transformative breakthroughs. Steve was fascinated by that in the context of what would have been his next book, A Taste of Salt, about cystic fibrosis.

Steve wrote about how the medical model of autism focuses on what’s wrong and stigmatizes disability. We both felt the social model, as embraced by neurodiversity proponents, was a healthier perspective. It may be more realistic to acknowledge that we need both models and that some aspects of autism and the problems that often accompany it (epilepsy, GI trouble, etc.) can be made easier through medical approaches. In contrast, most of the others would benefit from the social model’s change in attitudes and approaches toward disability as natural, not wrong. I like to think we both took a more balanced view and recognized that most of us have a mix of strengths offset by weaknesses in other areas.

Steve always championed the neurodiversity movement, which evolved as a response to the medical community’s focus on what’s wrong with us. He knew we were more than a package of disabilities to be treated. At the same time, we now know that the fact that our neurodiversity is biologically based means that we may have medical problems in addition to cognitive or behavioral differences. Our knowledge in that area has evolved significantly since NeuroTribes came out. If you want to know more, one good place to look is the PubMed index maintained by the National Institutes of Health.

Neurodiversity is a term for diversity of people whose differences are in their neurology—their central nervous systems—including our brains. We can observe behaviors, but we can’t so easily see how other parts of our nervous systems are affected by diversity. Yet the same biological rules apply—the more an organism diverges from the mean, the more at risk it is. We are just beginning to study that and to study how this shapes us through the life span. As of this writing, there are far more questions than answers.

Good examples of this in neurodivergent people would be chronic (dangerous) clumsiness or chronic (causing suffering) digestive system problems. The nervous system governs our entire body, so a seemingly benign behavioral difference may be accompanied by an unpleasant or even life-threatening medical issue elsewhere in the body. Epilepsy is a life-threatening condition that is far more common in neurodivergent people than in the general population, and we don’t yet know why. Later in life, some of the biological differences that produce epilepsy in childhood may increase our vulnerability to Parkinson’s and other debilitating late-life conditions. As an older person, I’d like to know about those vulnerabilities and what we can do about them before it’s too late.

During my last years helping guide autism research policy for our National Institutes of Health (I retired from the Interagency Autism Coordinating Committee in 2021) I pressed hard for more life span research and more study of medical complications of neurodiversity, because research suggests neurodivergent people may have greater medical vulnerability with age, and that is a critical concern. That work continues today at NIH.

When we look at people whose neurology is different, or diverse, we are most often seeing the result of stable, heritable genetic differences. For example, my parents were obviously neurodivergent, I am neurodivergent, and so is my son. Steve called out the lure of assortative mating, and indeed, I and many of my neurodivergent friends have neurodivergent partners, increasing our odds of having neurodivergent children. The longer that goes on, the better, because evolution pushes us toward stability and survivability.

Then there are what we call de novo genetic mutations that can produce profound disability. De novo mutations are not inherited; they appear spontaneously, often for no known reason. Many, like Fragile X, are extremely disabling or deadly. In the distant future, we may be able to identify people with what we might call “genetic injury” for targeted treatment to mitigate the results of these de novo events. That concept is not well understood by the public, who often oppose genetics research on principle, but it’s real. It opens the door to someday developing focused treatments for some people. NeuroTribesdoes not address those questions because they are still new, and most were unknown when Steve was writing, but today, there is plenty to read in the autism and medical science journals for those who are curious.

Right now, the one thing we can do for people who struggle with the impacts of serious cognitive and medical disability is to provide them comfort, care, and a good quality of life for all their lives. This would go a long way toward improving the experiences of these autistic people as well as their families. We cannot remediate these conditions today, but we can care for and support the people. In my opinion, this is a moral obligation of a great society. We should all agree on that. Steve certainly did.

At the same time, at the other end of the spectrum, we realize that autism, ADHD, and other less common diagnoses could be called the observable manifestations of a common set of stable, heritable genetic differences shaped by the environments in which we develop. Research into this is complicated by the fact that there are hundreds of genes implicated in these conditions, and they can be passed on in innumerable combinations. Research continues as I write this.

Given that evolving understanding, should we get rid of the autism, ADHD, and other labels altogether to subsume them into something bigger based on this evolving biological knowledge? Some say we should. Right now, that’s a question for the future. Medical validation of this potential neurotype is still some years away, but I would not be surprised if it happened in my lifetime.

In the decade since NeuroTribes was released, science has continued its march, and the community Steve described has already grown much larger than autism. Right now, the online ADHD community is growing fast, and they are some of the most vocal champions of neurodiversity today.

According to the latest CDC data, one in thirty-six schoolchildren now qualify for an autism diagnosis. One in eight may be diagnosed with ADHD, and more with dyslexia and other inborn neurological differences. There is considerable overlap between diagnoses, with some kids receiving multiple labels, but it’s clear that at least one in seven kids has some kind of inborn neurological difference. All those kids will become adults, and of course, there are millions of neurodivergent adults like me out in the world now. One in seven humans is a huge number. Taken together, it already feels like we present a distinct neurotype. Steve’s title has indeed come to pass. We are the neurotribe.

I hope you enjoy this book.

P.S. In writing this foreword, I received invaluable assistance from Steve’s husband, Keith Karraker, and his longtime friend Shannon Rosa. I relied on them to be sure these words are true to the Steve we all knew, and any errors are mine alone. I also thank his editor, Hannah Steigmeyer at Penguin Random House. Steve was so proud to be an author in the Penguin Random House family, and I know that because I feel exactly the same.

John Elder Robison, author of Look Me in the EyeAmherst, MA, February 2025

Original Foreword

BY OLIVER SACKS

I first met Steve Silberman in 2001. He was a young journalist then, assigned to do a profile of me before the publication of my memoir Uncle Tungsten. He quickly gained my confidence, and I was to spend many hours talking with him, going with him to London, where I grew up, and introducing him to many of my friends and colleagues. Steve always dug deeper, asked more penetrating questions. He thought about things and made connections.

Around that time, he developed an interest in the growing “epidemic” of autism and Asperger’s syndrome. He had been intrigued when I wrote about Temple Grandin and the savant artist Stephen Wiltshire in An Anthropologist on Mars, and now he set out to talk to researchers, physicians and therapists, parents of autistic children, and—most importantly—autistic people themselves. I know of no one else who has spent so much time simply listening, trying to understand what it is like to be autistic. Steve’s journalistic instincts and skills led him to do a tremendous amount of research, illuminating as no one has before the history of Leo Kanner and Hans Asperger and their clinics, as well as those who followed. He has portrayed the remarkable shifting of attitudes toward autism and Asperger’s over the past few decades.

NeuroTribes is a sweeping and penetrating history of all this, 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.

Introduction:Beyond the Geek Syndrome

There is more than one way to do it.

—LARRY WALL

On a bright May morning in 2000, I was standing on the deck of a ship churning toward Alaska’s Inside Passage with more than a hundred computer programmers. The glittering towers of Vancouver receded behind us as we slipped under the Lions Gate Bridge heading out to the Salish Sea. The occasion was the first “Geek Cruise”—an entrepreneur’s bid to replace technology conferences in lifeless convention centers with oceangoing trips to exotic destinations. I booked passage on the ship, a Holland America liner called the Volendam, to cover the maiden voyage for Wired magazine.

Of the many legendary coders on board, the uncontested geek star was Larry Wall, creator of Perl, one of the first and most widely used open-source programming languages in the world. Thousands of websites we rely on daily—including Amazon, Craigslist, and the Internet Movie Database—would never have gotten off the ground without Perl, the beloved “Swiss Army chainsaw” of harried systems administrators everywhere.

To an unusual and colorful extent, the language is an expression of the mind of its author, a boyishly handsome former linguist with a Yosemite Sam mustache. Sections of the code open with epigrams from Larry’s favorite literary trilogy, The Lord of the Rings, such as “a fair jaw-cracker dwarf-language must be.” All sorts of goofy backronyms have been invented to explain the name (including “Pathologically Eclectic Rubbish Lister”), but Larry says that he derived it from the parable of the “pearl of great price” in the Gospel of Matthew. He told me that he wanted the code to be like Jesus in its own humble way: “Free, life-changing, and available to everyone.” One often-used command is called bless.

But the secret of Perl’s versatility is that it’s also an expression of the minds of Larry’s far-flung network of collaborators: the global community of Perl “hackers.” The code is designed to encourage programmers to develop their own style and everyone is invited to help improve it; the official motto of this community is “There is more than one way to do it.”

In this way, the culture of Perl has become a thriving digital meritocracy in which ideas are judged on their usefulness and originality rather than on personal charisma or clout. These values of flexibility, democracy, and openness have enabled the code to become ubiquitous—the “duct tape that holds the Internet together,” as Perl hackers say. As the Volendam steered into open water, I watched with admiration as my fellow passengers pulled Ethernet cables, routers, and other networking paraphernalia out of their bags to upgrade the ship’s communication systems. Instead of dozing in chaise longues by the pool, my nerdy shipmates were eager to figure out how things work and help make them work better. By midweek, they persuaded the captain to give them a tour of the engine room.

Each evening as our ship climbed toward the Arctic Circle, Larry made a dramatic entrance to the ship’s dining hall on the arm of his wife, Gloria, sporting a ruffled shirt and neon tuxedo. He wore a different color tuxedo each night, in a retina-scorching array of lime, orange, sky blue, and mustard made possible by a going-out-of-business sale in his hometown. Belying the stereotype of hard-core coders as dull and awkward conversationalists, Larry and my other companions at the Wizards’ Table displayed a striking gift for puns, wordplay, and teasing banter. One night, the topic of conversation was theoretical physics; the next, it was the gliding tones of Cantonese opera, followed by thoughts on why so many coders and mathematicians are also chess players and musicians. The tireless curiosity of these middle-aged wizards gave them an endearingly youthful quality, as if they’d found ways of turning teenage quests for arcane knowledge into rewarding careers. On weekends, they coded recreationally, spinning off side projects that lay the foundations of new technologies and startups.

After a few days on the ship, I came to feel that my fellow passengers were not just a group of IT experts who happened to use the same tools. They were more like a tribe of digital natives with their own history, rituals, ethics, forms of play, and oral lore. While the central focus of their lives was the work they did in solitude, they clearly enjoyed being with others who are on the same frequency. They were a convivial society of loners.

Their medieval predecessors might have spent their days copying manuscripts, keeping musical instruments in tune, weaving, or trying to transmute base metals into gold. Their equivalents in the mid-twentieth century aimed telescopes at the stars, built radios from mail-order kits, or blew up beakers in the garage. In the past forty years, some members of this tribe have migrated from the margins of society to the mainstream and currently work at companies with names like Facebook, Apple, and Google. Along the way, they have refashioned pop culture in their own image; now it’s cool to be obsessed with dinosaurs, periodic tables, and Doctor Who—at any age. The kids formerly ridiculed as nerds and brainiacs have grown up to become the architects of our future.

WHEN THEVOLENDAMARRIVED in Glacier Bay, at the midpoint of our journey, we drifted through a natural cathedral of ice with the engines switched off. The thunder of glaciers calving a few hundred yards away ricocheted across the deck. At three a.m., the sun barely dipped toward the horizon before rising again.

Just before the ship arrived back in Vancouver, I asked Larry if I could do a follow-up interview at his home in Silicon Valley. “That’s fine,” he said, “but I should tell you, my wife and I have an autistic daughter.” I took note of his remark but didn’t think much about it. Everything I knew about autism I had learned from Rain Man, the 1988 film in which Dustin Hoffman played a savant named Raymond Babbitt who could memorize phone books and count toothpicks at a glance. He was certainly a memorable character, but the chances of meeting such a person in real life seemed slim. As far as I knew, autism was a rare and exotic neurological disorder, and savants like Raymond were even rarer than that.

Larry was genial and forthcoming during our interview as he explained how Perl was born as a top secret project at the National Security Agency. His boss asked him to design a software tool for configuring two sets of computers remotely, one on the East Coast and one on the West. But Larry—who once wrote that the three great virtues of programmers are their laziness, impatience, and hubris—was loath to spend a month coding a widget that could be used for only a single task. Instead, he crafted Perl and slipped a tape containing the source code into his pocket before walking out the door.

As I chatted with Larry about his illustrious invention, a bulb lit up on the wall behind us. He had replaced the chime on his clothes dryer with an unobtrusive bulb because the little ding! at the end of each cycle disconcerted him. Such tinkering seemed par for the course for a man whose code made it possible for a Perl hacker named Bruce Winter to automate all the devices in his house and have his e-mail read to him over the phone—in 1998. It didn’t occur to me until much later that Larry’s keen sensitivity to sound might provide a link between his daughter’s condition and the tribe of industrious hermits who invented the modern digital world.

A few months later, I started working on a profile of one of the most highly regarded female technologists in Silicon Valley, an entrepreneur named Judy Estrin. As a graduate student at Stanford in the 1970s, she helped Vint Cerf develop the TCP/IP protocols that form the backbone of the Internet. Judy went on to a successful career, launching startups in the male-dominated tech industry. To fill out Judy’s personal story, I reached out to her brother-in-law Marnin Kligfeld, and asked him if I could interview him at home. “Sure,” he said, “but just so you know, we have an autistic daughter.”

That certainly seemed like an odd coincidence—two technically accomplished families in the Valley whose children had a rare neurological disorder? The next day, I was telling a friend at a neighborhood café about this curious synchronicity. Suddenly, a trim, dark-haired young woman at the next table blurted out, “I’m a special-education teacher. Do you realize what’s going on? There is an epidemic of autism in Silicon Valley. Something terrible is happening to our children.”

Her words were chilling. Could they be true?

I STARTED READING every news story about autism I could find and downloading journal articles by the score. It soon became clear that the mysterious rise in diagnoses was not restricted to Silicon Valley. The same thing was happening all over the world.

To put the rising numbers in context, I familiarized myself with the basic time line of autism history, learning the story of how this baffling condition was first discovered in 1943 by a child psychiatrist named Leo Kanner, who noticed that eleven of his young patients seemed to inhabit private worlds, ignoring the people around them. They could amuse themselves for hours with little rituals like spinning pot lids on the floor, but they were panicked by the smallest changes in their environments, such as a chair or favorite toy being moved from its usual place without their knowledge. Some of these children were unable to speak, while others only repeated things they heard said around them or spoke of themselves detachedly in the third person. Claiming that their condition differed “markedly and uniquely” from anything previously reported in the clinical literature, Kanner named their condition autism—from the Greek word for self, autos—because they seemed happiest in isolation.

Then a year later, in an apparent synchronicity, a Viennese clinician named Hans Asperger discovered four young patients of his own who seemed strangely out of touch with other people, including their own parents. Unlike Kanner’s young patients in Baltimore, these children spoke in elaborate flowery sentences while displaying precocious abilities in science and math. Asperger affectionately compared them to little professors. He also called their condition autism, though it’s still a matter of dispute if what he saw in his clinic was the same syndrome that Kanner described.

For decades, estimates of the prevalence of autism had remained stable at just four or five children in ten thousand. But that number had started to snowball in the 1980s and 1990s, raising the frightening possibility that a generation of children was in the grips of an epidemic of unknown origin. After telling my editor about the frightening thing that the teacher in the café said about what was happening in Silicon Valley—the heart of Wired’s tech-savvy readership—I got permission to pursue this intriguing lead.

My research was facilitated by the fact that our apartment in San Francisco is located just down the hill from the University of California, which boasts one of the best medical libraries in the country. I became a regular browser in the stacks, poring through articles on epidemiology, pediatrics, psychology, genetics, toxicology, and other relevant subjects. Meanwhile, my shelves at home filled up with books like Clara Claiborne Park’s The Siege, Oliver Sacks’s An Anthropologist on Mars, and Temple Grandin’s Thinking in Pictures. Each offered a view of the diverse world of autism from a unique vantage point.

The Siege, published in 1967, was the first book-length account of raising an autistic child by a loving and devoted parent. In a dark age when psychiatrists falsely blamed “refrigerator mothers” for causing their children’s autism by providing them with inadequate nurturing, Park offered a candid portrait of life with her young daughter Jessy (called Elly in the book), who would sit by herself for hours, sifting sand through her fingers. With the meticulous eye of an explorer mapping uncharted territory, Park chronicled each small thing that Jessy learned to do in her first years, usually with great effort—only to apparently unlearn it shortly thereafter.

Lying in bed in the leisurely mornings the summer she was two, I listened to her pronounce her name. “El-ly,” she said. “El-ly”—laughing, chuckling, over and over again. The sounds, even the consonants, were exquisitely clear. I’m glad I got the chance to hear her. For a month or so she said it. Then she ceased completely. It was two years at least until she spoke her name again.

Sacks’s books examined autism from the point of view of a compassionate clinician, embodying the tradition of astute observers like Jean-Martin Charcot, the founder of modern neurology, and Alexander Luria, who wrote case histories of his patients so full of insight into the human condition that they read like novels. In nuanced portraits of autistic people like artist Stephen Wiltshire and industrial designer Temple Grandin, Sacks cast light on the challenges that they face in their day-to-day lives while paying tribute to the ways they bring the strengths of their atypical minds to their work. “No two people with autism are the same: its precise form or expression is different in every case,” he wrote. “Moreover, there may be a most intricate (and potentially creative) interaction between the autistic traits and the other qualities of the individual. So, while a single glance may suffice for clinical diagnosis, if we hope to understand the autistic individual, nothing less than a total biography will do.”

Thinking in Pictures was such a biography written from the inside. Grandin, who didn’t learn to speak until she was four, was initially misdiagnosed with brain damage—a common occurrence in the days when autism was still widely unknown even among medical professionals. Encouraged by her mother, Eustacia Cutler, and a supportive high school science teacher named Bill Carlock, Grandin developed her instinctive kinship with animals into a set of practical skills that enabled her to succeed in the demanding job of designing facilities for the livestock industry. Instead of the usual inspirational fable about an extraordinary person “triumphing” over a tragic medical condition, Thinking in Pictures was the story of how Grandin had come to regard her autism as both a disability and a gift—as “different, not less.”

Then my real reporting began. I interviewed an eleven-year-old boy named Nick who told me that he was building an imaginary universe on his computer. Chubby, rosy-cheeked, and precociously articulate, he informed me that he had already mapped out his first planet: an anvil-shaped world called Denthaim that was home to gnomes, gods, and a three-gendered race called the kiman. As he told me about the civilization he was creating on his desktop, he gazed up at the ceiling, humming fragments of a melody over and over. The music of his speech was pitched high, alternately poetic and pedantic, as if the soul of an Oxford don had been awkwardly reincarnated in the body of a boy. “I’m thinking of making magic a form of quantum physics, but I haven’t decided yet, actually,” he said. I liked him immediately.

But Nick’s mother broke down in tears as she told me that he didn’t have a single friend his own age. She recalled one terrible day when his classmates bribed him to wear a ridiculous outfit to school. Because autistic people struggle to make sense of social signals in real time, Nick didn’t realize that his schoolmates were setting him up for humiliation. I wondered what would become of this bright, imaginative, trusting boy as he got older and his peers became obsessed with social status and dating.

Other parents shared the ingenious strategies they developed to help their children learn to cope with a world full of unavoidable changes and surprises. A family event like a first trip on an airplane required months of careful planning and preparation. Marnin told me about the steps that he and his wife, Margo, an internist in the Bay Area, took to help their daughter Leah feel comfortable on her first visit to a new dentist. “We took pictures of the dentist’s office and the staff, and drove her past the office several times,” he said. “Our dentist scheduled us for the end of the day, when there were no other patients, and set goals with us. The goal of the first session was to have my daughter sit in the chair. The second session was so she could rehearse the steps involved in treatment without actually doing them. The dentist gave all of his equipment special names for her. Throughout this process, we used a large mirror so she could see exactly what was being done, and to ensure that there were no surprises.”

Like many parents, Marnin and Margo had become amateur autism researchers themselves, devoting hours of their precious alone time each week to poring through the latest studies and evaluating therapies that might be of help to Leah. I learned that it was not unusual for parents whose finances were already strained by the cost of behavioral interventions to have to walk away from careers they loved to effectively become case managers for their children, fielding teams of behavioral therapists while going into battle with school boards, regional centers, and insurance companies to ensure that their children got the education and services they deserve.

One of the hardest things about having a child with autism, parents told me, was struggling to maintain hope in the face of dire predictions from doctors, school administrators, and other professionals who were supposed to be on their side. When Leah was diagnosed, an autism specialist told Marnin, “There is very little difference between your daughter and an animal. We have no idea what she will be able to do in the future.” (At twenty-five, Leah is a bright, engaging, and affectionate young woman who remembers the names of every teacher and fellow student in her classes—going all the way back to preschool—and sings along with her favorite songs in perfect pitch.) In some ways, things hadn’t changed much since the era when Clara Claiborne Park and Eustacia Cutler were told to put their daughters in institutions and move on with their lives.

TO GET TO THE BOTTOM of what was happening in Silicon Valley, I asked Ron Huff of the California Department of Developmental Services to isolate the data from the agency’s regional centers in Santa Clara County from the data in other areas of the state. He confirmed that there was a disproportionately high demand for autism services in the cradle of the technology industry.

By the time I wrote my article, the notion that high-tech hot spots like Silicon Valley and Route 128 outside Boston were havens for brilliant, socially awkward programmers and engineers was becoming a cliché in popular culture. It was a familiar joke in the industry that many hard-core coders in IT strongholds like Intel, Adobe, and Silicon Graphics—coming to work early, leaving late, sucking down Big Gulps in their cubicles—were residing somewhere in Asperger’s domain. Kathryn Stewart, director of the Orion Academy, a high school for autistic kids in Moraga, California, said that she called Asperger’s syndrome “the engineers’ disorder.” In his popular novel Microserfs, Douglas Coupland quipped, “I think all tech people are slightly autistic.”

One possible explanation for a surge of autism in tech-centric communities like the Valley, UCLA neurogeneticist Dan Geschwind suggested to me, was that the culture of these places had opened up social possibilities for men and women on the spectrum that had never before existed in history. A speech-language pathologist named Michelle Garcia Winner told me that many parents in her practice became aware of their own autistic traits only in the wake of their child’s diagnosis. Temple Grandin observed in Thinking in Pictures, “Marriages work out best when two people with autism marry or when a person marries a handicapped or eccentric spouse . . . They are attracted because their intellects work on a similar wavelength.”

Attraction between people with similar genetic traits is called assortative mating. In 1997, cognitive psychologist Simon Baron-Cohen found that the fathers and grandfathers of children with autism were more likely to be engineers. Could assortative mating between men and women carrying the genes for autism be responsible for the rising number of diagnoses in the Valley?

My story exploring that hypothesis, “The Geek Syndrome,” was published in the December issue of Wired in 2001. The world was still reeling from the horror of the attacks on the World Trade Center and the Pentagon on September 11, but e-mail started pouring into my inbox even before the magazine officially hit the newsstands. I heard from parents who said that the article helped them feel less isolated from other parents facing the same challenges with their own children; from clinicians who saw the same dynamic at work in their own high-tech communities; and from readers who had been struggling in social situations for most of their lives without knowing why. This flood of responses was both inspiring and humbling.

I have a twelve-year-old son. He takes accelerated math and science courses. His hobby is memorizing facts and figures about civil and military aircraft dating back to WWI. He’s always had a fascination with clocks and watches. As you may have guessed, he has Asperger’s syndrome. I’ve always asked myself, “Why is my son the way he is?” No one has been able to give me a possible answer until I read your article. You see, my husband is an engineer. After reading your article, it felt like the pieces were falling into place . . .

Your article sheds light on my original computer mentor. He could play four games of chess simultaneously and best all four opponents. He always knows what the total cost of the grocery shopping will be, including sales tax, before he enters the checkout line. But his son has trouble making eye contact . . .

When I was five years old, I was taking my electronic toys apart to see how they worked. (I also attempted to put them back together, with mixed results.) I have always been a voracious reader. I was reading college-level physics books bought at garage sales in the second grade. I used to annoy my father to no end wanting to build scale models of nuclear reactors, submarines, trains, anything you could think of. I have only had very small groups of close friends. I always considered that odd but never knew how to go about correcting it. Quite frankly, I find most people quite annoying and illogical—probably another common Asperger trait. :)

It is so important that the general public and the hiring companies understand this group of people. Many will fall through the cracks due to their “odd” behaviors. Many have so much to contribute if given the chance.

Thankfully I received only a few e-mails like this one:

Like many people, I’m starting to get fed up with the multiplication of psychological disorders such as attention deficit disorder and Asperger’s syndrome. In the old days, if you didn’t pay attention in class, you got whacked, and that usually did the trick for many youngsters.

I also got a call from a supervisor at Microsoft who told me, “All of my top debuggers have Asperger syndrome. They can hold hundreds of lines of code in their head as a visual image. They look for the flaws in the pattern, and that’s where the bugs are.”

At a conference a few months after my article came out, the grandmother of a young girl asked me to sign a copy of my article that had been photocopied so many times that I could barely make out the text.

Years passed, and I still got e-mail about “The Geek Syndrome” nearly every week. As time went on, though, I became convinced that by focusing on the dynamics of autism in one highly specialized community, I had missed a larger and more important story.

“THE ULTIMATE HACK FOR a team of Silicon Valley programmers,” I wrote in 2001, “may turn out to be cracking the genetic code that makes them so good at what they do.” The first decade of the new century was a time of hope for many families, as parents told me they felt optimistic that science was on the verge of finally unraveling the mystery of their children’s condition. At the same time, nearly every public discussion of autism was dominated by a rancorous debate about vaccines, based on the controversial findings of a gastroenterologist in England named Andrew Wakefield who claimed to have uncovered a potential link between the measles, mumps, and rubella vaccine (commonly known as the MMR) and a form of regression that he dubbed “autistic enterocolitis.”

Parents seeking advice about raising their newly diagnosed children wandered into a minefield of conflicting information about the safety of routine childhood inoculations and the potential role of heavy metals like mercury (contained in trace amounts in vaccine preservatives like thimerosal) in contributing to their children’s developmental delays. As fears of a vast conspiracy between Big Pharma and corrupt government officials to cover up the effects of a global wave of vaccine injury circulated on the newly emerging Internet, vaccination uptake rates worldwide began to fall, raising the specter of a resurgence of plagues like pertussis that formerly killed tens of thousands of children a year. The official explanation for the soaring prevalence estimates was that the diagnostic criteria for autism had been gradually broadened over the years. But if that was the case, why were the criteria so inappropriately narrow in the first place? How could a formerly rare and obscure syndrome that was allegedly rooted in genetics suddenly seem to be everywhere at once?

Driven by the public outcry about the rising numbers, autism research—long neglected by funding agencies like the National Institutes of Health (NIH) precisely because the condition was believed to be so rare—was on the threshold of a golden age. Between 2000 and 2011, NIH grants in the field climbed each year by an average of $51 million, including a $1 billion boost in 2006 from the Combating Autism Act. Private funding groups like the Simons Foundation also pitched in, pushing the total investment in autism research to its highest levels in history. In 2011, Autism Speaks, the largest autism fund-raising organization in the world, announced a $50 million team effort with the Beijing Genomics Institute to map the whole genomes of ten thousand individuals from families with two or more autistic children. The organization’s vice president of scientific affairs, Andy Shih, promised that the project would generate “a transformative level of information.”

By the end of the decade, it was clear that the scientists had done just what they had been paid to do. Molecular biologists had identified more than a thousand candidate genes and hundreds of de novo mutations associated with autism. They had also come to a greater understanding of epigenetics, the science of factors that mediate interactions between genes and the environment. The list of suspected environmental triggers for autism seemed to grow longer every day, encompassing dozens of chemicals in common use, prompting Forbes science writer Emily Willingham, the mother of an autistic son, to write a blog post with the headline, “This Just In . . . Being Alive Linked to Autism.” Yet for families like Willingham’s, the long-promised transformative moment that would improve the quality of their children’s lives somehow never arrived.

The authors of a major study published in Nature admitted that even the most common genetic factors brought to light in their research were found in less than 1 percent of the children in their sample. “Most individuals with autism are probably genetically quite unique,” said Stephen Scherer of the Hospital for Sick Children in Toronto. UCLA neurogeneticist Stanley Nelson added, “If you had 100 kids with autism, you could have 100 different genetic causes.” A wry saying popular in the autistic community, “If you meet one person with autism, you’ve met one person with autism,” turns out to be true even for molecular biologists.