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What is autism: a devastating developmental disorder, a lifelong disability, or a naturally occurring form of cognitive difference akin to certain forms of genius? Steve Silberman unearths the secret history of autism, long suppressed by the same clinicians who became famous for discovering it. Going back to the earliest days of autism research, 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.
- Sales Rank: #1340390 in Books
- Published on: 2015-09-03
- Original language: English
- Number of items: 1
- Dimensions: 9.21" h x 1.54" w x 6.02" l, 2.05 pounds
- Binding: Mass Market Paperback
Review
Winner of the 2015 Samuel Johnson Prize for non-fiction
"Ambitious, meticulous and largehearted history...NeuroTribes is beautifully told, humanizing, important."
—The New York Times Book Review
"Mr. Silberman has surely written the definitive book about [autism’s] past."
–The Economist
“A comprehensive history of the science and culture surrounding autism studies…an essential resource.” –Nature magazine
“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
“Breathtaking… as emotionally resonant as any [book] this year." –The Boston Globe
“A lively, readable book… To read NeuroTribes is to realize how much autistic people have enriched the scope of human knowledge and diversity, and how impoverished the world would be without them.” –The San Francisco Chronicle
“It is a beautifully written and thoughtfully crafted book, a historical tour of autism, richly populated with fascinating and engaging characters, and a rallying call to respect difference.” – Science magazine
“Epic and often shocking…Everyone with an interest in the history of science and medicine — how it has failed us, surprised us and benefited us — should read this book.” –Chicago Tribune
“The best book you can read to understand autism" –Gizmodo
“Required reading for every parent, teacher, therapist, and person who wants to know more about autism” –Parents.com
"This is perhaps the most significant history of the discovery, changing conception and public reaction to autism we will see in a generation." –TASH.org
“A well-researched, readable report on the treatment of autism that explores its history and proposes significant changes for its future…In the foreword, Oliver Sacks writes that this 'sweeping and penetrating history…is fascinating reading' that 'will change how you think of autism.' No argument with that assessment." –Kirkus Reviews
“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
“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
About the Author
Steve Silberman has covered science and cultural affairs for Wired and other national magazines for more than twenty years. His writing has appeared in the New Yorker, Time, Nature, and Salon. He lives in San Francisco.
Oliver Sacks (1933-2015) was the author of twelve previous books, including The Mind's Eye, Musicophilia, The Man Who Mistook His Wife for a Hat, and Awakenings (which inspired both the Oscar-nominated film and a play by Harold Pinter). The New York Times has referred to Dr. Sacks as "the poet laureate of medicine," and he was a frequent contributor to the New Yorker and the New York Review of Books. He lived in New York City, where he was professor of neurology at the NYU School of Medicine for many years.
William Hughes is a professor of political science at Southern Oregon University in Ashland, Oregon. He received his doctorate in American politics from the University of California, Davis. He has done voice-over work for radio and film and is also an accomplished jazz guitarist.
Excerpt. © Reprinted by permission. All rights reserved.
Foreword
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.
Hans Asperger and children at the University of Vienna, 1930s.
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 THE VOLENDAM ARRIVED 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 dubbed them his “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 descibed.
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 . . .
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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 . . .
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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. :)
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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.
In 2010, I spoke to one of the fathers I’d interviewed nine years earlier. He told me that he was no longer worrying about what had caused his daughter’s autism. Instead, he was concerned about her future. She was about to “age out” of the modest level of services that the state of California provided to the family. Despite years of behavioral therapy, her skills had not developed to the point where he and his wife felt confident that she would ever be able to live on her own. “The question that keeps me up at night,” he said, “is what will happen to our beloved daughter when we die?”
With the Centers for Disease Control (CDC) currently estimating that one in sixty-eight school-aged children in America are on the autism spectrum, millions of families will be facing sleepless nights in the coming decades. Many autistic adults are not exercising the strengths of their atypical minds at companies like Apple and Google—instead, a disproportionate number are unemployed and struggling to get by on disability payments. Two decades after the passage of the Individuals with Disabilities Education Act (IDEA), parents still routinely find themselves having to sue their local school boards to obtain an appropriate classroom placement for their son or daughter. Furthermore, very little of the money raised by advocacy organizations like Autism Speaks addresses the day-to-day needs of autistic people and their families. By focusing primarily on funding searches for potential causes and risk factors, these organizations reinforce the idea that autism is a historical anomaly—a distinctive problem of modern times that could be solved by a discovery that seems perpetually just around the corner.
As the mainstream world had a long argument about vaccines, newly diagnosed adults were engaged in a very different conversation about the difficulties of navigating and surviving in a world not built for them. By sharing the stories of their lives, they discovered that many of the challenges they face daily are not “symptoms” of their autism, but hardships imposed by a society that refuses to make basic accommodations for people with cognitive disabilities as it does for people with physical disabilities such as blindness and deafness.
A seemingly simple question began to formulate in my mind: After seventy years of research on autism, why do we still seem to know so little about it?
—
TO FIND THE ANSWER to that question for this book, I decided to start my reporting at the very beginning, even before Kanner’s and Asperger’s allegedly independent discoveries of autism in the 1940s. By taking nothing for granted, I learned that the standard time line of autism history—its creation myth, so to speak—is fundamentally flawed in ways that render autistic people in previous generations harder to see. Until these inaccuracies in the time line are corrected, they will continue to hamper our ability to make wise choices about the kinds of research and societal accommodations that would be most beneficial to autistic people and their families.
One of the most promising developments since the publication of “The Geek Syndrome” has been the emergence of the concept of neurodiversity: the notion that conditions like autism, dyslexia, and attention-deficit/hyperactivity disorder (ADHD) should be regarded as naturally occurring cognitive variations with distinctive strengths that have contributed to the evolution of technology and culture rather than mere checklists of deficits and dysfunctions. Though the spectrum model of autism and the concept of neurodiversity are widely believed to be products of our postmodern world, they turn out to be very old ideas, proposed by Hans Asperger in his first public lecture on autism in 1938.
The idea of neurodiversity has inspired the creation of a rapidly growing civil rights movement based on the simple idea that the most astute interpreters of autistic behavior are autistic people themselves rather than their parents or doctors. In 2007, a woman named Amanda (now Amelia) Baggs posted an extraordinary video to YouTube called “In My Language” that has already been viewed more than a million times after being picked up by major media outlets like CNN and the New York Times. At first, the camera follows Baggs—who finds using spoken language difficult but can type 120 words a minute—as she presses her face into a book, rubs her fingers across her keyboard, flaps her hands, hums to herself, and bobs a Slinky up and down. A clinician would likely say that she is exhibiting self-stimulating behavior, one of the classic signs of autism. But in the second part of the video, “A Translation,” Baggs makes clear that she is not sharing these intimate glimpses of her life as a plea for pity. Her intent is more subversive: celebrating the joy of her existence on her own terms. “My language is not about designing words or even visual symbols for people to interpret,” she explains. “It is about being in a constant conversation with every aspect of my environment, reacting physically to all parts of my surroundings. Far from being purposeless, the way that I move is an ongoing response to what is around me.” Her words are articulated by a text-to-speech program, as if a machine itself is speaking, yet few clips on YouTube offer a glimpse into a mind so profoundly humane.
Another impetus for writing this book was attending Autreat, an annual retreat organized by autistic people for autistic people, in a social environment carefully constructed to eliminate sources of sensory overload and anxiety while maximizing opportunities for people on the spectrum to simply relax, enjoy being themselves, and make connections with one another. My conversations at Autreat—some mediated by keyboards or other devices for augmenting communication—taught me more about the day-to-day realities of being autistic than reading a hundred case histories would. They also offered me the chance to be in the neurological minority for the first time in my life, which illuminated some of the challenges that autistic people face in a society not built for them, while disabusing me of pernicious stereotypes such as the idea that autistic people lack humor and creative imagination. After just four days in autismland, the mainstream world seemed like a constant sensory assault.
The notion that the cure for the most disabling aspects of autism will never be found in a pill, but in supportive communities, is one that parents have been coming to on their own for generations. In her last book, Exiting Nirvana, Clara Claiborne Park descibed how her neighbors helped her daughter build a life of happiness and fulfillment in Williamstown, Massachusetts, where Jessy still lives now, years after her mother’s death. At fifty-five, she continues to work in the mailroom at Williams College while painting luminous, meticulously precise images of the world as she sees it, as she has done since her high school art teacher encouraged her to take up a brush forty years ago.
“That society has opened up a place for Jessy is what, more than anything else, has made it possible for her to live in, and even contribute to, the community she was born in,” Park wrote in 2001. “I can write these words with a faith in a future I’ll never see.”
Steve Silberman
San Francisco
August 2010–2015
One
As an experimenter he did not accept nature as given, but adapted it to respond to his questions.
—CHRISTA JUNGNICKEL AND RUSSELL MCCORMMACH,
Cavendish: The Experimental Life
Every evening in the last years of the eighteenth century, at precisely the same hour, a solitary figure stepped forth from the most unusual house on Clapham Common to take his nightly constitutional. To avoid the prying eyes of his neighbors, he stuck to the middle of the road, never hailing those who recognized him or touching his hat to acknowledge passersby. Dressed in fussy clothes that had last been in fashion decades earlier, he walked with a distinctive slouching gait, his left hand held behind his back. His route, like his departure time, never varied. He would proceed down Dragmire Lane to Nightingale Lane and walk for another mile, past quiet town houses and rows of oak and hawthorn trees, until he arrived at Wandsworth Common. Then he would walk back the way he came.
He had made only one revision to this itinerary in a quarter of a century, after attracting the attention of two women who planted themselves at a corner where they were likely to catch sight of him. Spotting them from some distance away, he abruptly launched himself in the perpendicular direction, making an undignified but effective escape through the muck of a freshly plowed field. After that, he scheduled his walks after dusk, when he was least likely to be seen.
He guarded his precious solitude within the boundaries of his estate as rigorously as he did outside them, communicating with his household staff in notes left on a hall table. A maid wielding a broom once made the error of surprising him in a stairwell, and his swift response was to order the construction of a second set of steps at the rear of the residence to prevent such an incident from ever happening again.
His neighbors in this rustic London suburb knew little about his solitary labor in the shed beside his house that would one day make his name immortal. There were rumors going around Clapham that he was some sort of wizard. Admittedly, the most striking feature of his estate did not help to dispel those rumors. From a little hillock in the yard, an eighty-foot pole projected into the sky, like a ship’s mast rising from dry land.
By declining to sit for a formal portrait—usually a de rigueur concession for a man of his station—he nearly managed to block out the inquisitive gazes of historians from the future. The sole image of Henry Cavendish captured in his lifetime shows an aristocratic-looking man in a frock coat, frilled shirt-wrists, and white stockings, wearing a knocker-tailed periwig under a black three-cornered hat. This was a defiantly unchic style of dress even in the late 1700s, and he wore the same outfit every day of his adult life. Each year, when his coat—always the same shade of gray-green or violet—was on the verge of fading, he would prompt his tailor to sew up another one, identical to the first.
He was equally consistent in his dining habits. Though his personal fortune could have afforded him an ever-changing banquet of exotic delicacies shipped in from the farthest reaches of the empire, he subsisted for decades on the same humble dish at nearly every meal: leg of mutton. Once a week, when he took supper with his colleagues at the Royal Society Club, he invariably sat in the same chair, after hanging his hat and coat from a peg that may as well have had a plaque beside it engraved with his name.
That’s how a sly young draftsman named William Alexander finally succeeded in capturing his portrait—by acting like the Georgian equivalent of a paparazzo. After talking his way into the club, Alexander parked himself unobtrusively in a corner of the room and sketched Cavendish’s hat and coat dangling from the inevitable peg. At a subsequent meal, he drew his subject’s face as he prepared to tuck into his dish of mutton. Then the artist combined the two images, yielding a composite portrait of the complete man.
Cavendish’s inflexible routines and unvarying timetables were no more subject to amendment than the tides in Portsmouth harbor. On one rare occasion when he invited four Royal Society colleagues to dine with him in Clapham, a cook boldly ventured to suggest that a leg of mutton would hardly provide an adequate repast for five men. He replied, with characteristic terseness, “Well, then, get two.”
—
DESPITE HIS ECCENTRIC COUTURE and the strange totem rising from his backyard, Henry Cavendish was not a wizard. He was, in eighteenth-century terms, a natural philosopher, or what we now call a scientist. (The word scientist wasn’t coined until the nineteenth century, when it was proposed as a counterpart to artist by oceanographer and poet William Whewell.) He was not only one of the most ingenious natural philosophers who ever lived, he was one of the first true scientists in the modern sense.
His tireless explorations ranged across an entire university’s worth of disciplines, encompassing chemistry, math, physics, astronomy, metallurgy, meteorology, pharmacy, and a few fields that he pioneered on his own. In an age when data-mining the Lord’s creation was not yet regarded as a legitimate profession but more like an enlightened hobby, he defined the scope, conduct, and ambition of the scientific method for centuries to come.
The first surviving account of his work in the lab, a sheaf of papers dated 1764, details his study of arsenic and its metamorphosis into an off-white powder called “arsenical salt,” now known as potassium arsenate. Like most of his peers, Cavendish mistakenly believed that the hidden agent of this transformation was phlogiston, an element akin to fire. By understanding this element, he hoped to discover a key to many types of chemical reactions. The phlogiston hypothesis turned out to be bunk—and he quickly abandoned it—but his observations in the lab were so astute that he anticipated the synthesis of potassium arsenate by ten years, using a simpler method than the man usually given credit for that discovery, pharmacist Carl Wilhelm Scheele. Unlike Scheele, however, Cavendish neglected to issue the equivalent of a press release, so he got none of the credit—while Scheele became famous by popularizing an inferior method of synthesis.
Cavendish’s next major breakthroughs were in the study of the atmosphere. A late bloomer in the journals compared to his peers, he didn’t even submit his first paper for publication until age thirty-five, chronicling his discovery of an unstable gas he called “inflammable air”—the element now known as hydrogen, the basic building block of the universe. He then determined the composition of water by using a spark of electricity to combine this new gas and “dephlogisticated” air—oxygen. When he removed the nitrogen and oxygen from a flask in his lab, he noticed that a tiny bubble of a third gas remained. In that bubble was the element argon, which wouldn’t be officially discovered for another hundred years.
Scores of equally bold experiments followed. Cavendish analyzed the mathematics of musical intervals, formulated the theory of electrical potential, and was the first scientist to realize that a solution’s electrical conductivity varies with its concentration. He proposed that a long-tailed fish called the torpedo was able to generate its own current like a living battery, and then proved it by sculpting an artificial fish in his lab out of shoe leather, pewter plates, glass tubes, and sheepskin and hooking it up to Leyden jars, creating a perfect simulation of the fish’s electrical organs.
In 1769, lightning struck the steeple of the church of San Nazaro in Brescia, an ancient Roman city built at the foot of the Alps. The massive high-voltage pulse was conducted through the walls of the sanctuary to the basement, where the Venetian army had inconveniently stored one hundred tons of gunpowder. The resulting blast killed three thousand people, knocking one-sixth of the city flat. To prevent a similar fate from befalling the British army’s powder cache in its arsenal at Purfleet, the Royal Society appointed Lord Henry to the “lightning committee” assigned to studying ways of insulating it. Among the foreign dignitaries who came along on that trip was a natural philosopher from the thirteen colonies who knew a thing or two about electricity himself—Benjamin Franklin.
The lightning committee devised a crafty plan, based on Cavendish’s prescient theories of electricity, to surround a warehouse with metal rods, tipped with copper conductors, to draw impertinent discharges away from the unstable powder. While his paper on electrical theory was dismissed as too abstruse during his lifetime, two years after his death, a Royal Society historian declared it “the most rigid and satisfactory explanation of the phenomena of electricity . . . beyond dispute, the most important treatise on the subject that has ever been published.”
Cavendish submitted only a fraction of his work to the Royal Society journal, Philosophical Transactions. But he was an exhaustive chronicler of his own research, churning out an endless stream of carefully annotated tables, charts, graphs, and notebooks that only a small circle of his colleagues ever saw. He prized the open and egalitarian sharing of data but felt no compulsion to take credit for his discoveries. He preferred to avoid competition and controversy, and simply wanted to perform his experiments in peace.
As a result, the formula that descibes the flow of electrical current as a function of resistance is known as Ohm’s law rather than Cavendish’s law, though he anticipated the Bavarian physicist by a century. Likewise, a law descibing electrostatic interaction between charged particles—the foundation of modern electromagnetic theory—is synonymous with the name of French physicist Charles Augustin de Coulomb, though Cavendish thought of it first. His seminal discovery that water is not a monolithic element but composed of hydrogen and oxygen is usually attributed to Antoine Lavoisier. Once again, Cavendish had figured this out earlier but neglected to make a fuss about it—unlike the grandiose Lavoisier, who invited members of the Royal Academy to assist him in a public demonstration. Thus it is Lavoisier, rather than Cavendish, who is hailed as the father of modern chemistry, though his experimental methods made that revolution possible.
Cavendish may have dressed like a man from the past, but he lived like one from the future. If he had been born three centuries later, he would have been hailed as a visionary “maker”—a hacker who isn’t afraid to get his hands dirty in a machine shop.
II
To say that Cavendish’s distaste for hype and self-promotion extended to his personal life would be an understatement. The statesman Lord Henry Brougham observed in 1845 that his taciturn colleague “uttered fewer words in the course of his life than any man who lived to fourscore years, not at all excepting the monks of La Trappe.”
The source of this apparent shyness was social anxiety so intense that it nearly immobilized him in certain situations. Brougham descibed his face as “intelligent and mild, though, from the nervous irritation which he seemed to feel, the expression could hardly be called calm.” At weekly gatherings of his colleagues hosted by Royal Society president Joseph Banks, he would pause outside on the stoop, hesitant to knock on the door, until the arrival or departure of another guest virtually forced him to go in.
On one such occasion, he was introduced to a fan from Austria who regaled him with fulsome praise. Cavendish stood silent, eyes downcast, until he spotted an opening in the crowd, at which point he bolted from the room and leapt into his carriage, which carried him directly home. His anxiety may have been exacerbated by the fact that the intonations of his voice struck others as odd and displeasing—“squeaking,” according to the chemist Humphry Davy, who said that he seemed “even to articulate with difficulty.” Another colleague descibed him uttering a “shrill cry” at Royal Society meetings as he “shuffled quickly from room to room” to avoid being directly engaged. Cavendish was particularly discomfited if anyone tried to catch his eye.
It is not true, however, that he wanted to remove himself entirely from the company of his peers; he just wanted to stand off to the side, soaking everything in. Two scientists conversing on a topic of interest at the Royal Society’s Monday Club might notice a hunched figure in a gray-green coat lurking in the shadows, listening intently. Eager to solicit his appraisal of their work, his fellow natural philosophers devised a devious but effective method of drawing him into an exchange.
“The way to talk to Cavendish is never to look at him,” said astronomer Francis Wollaston, “but to talk as it were into a vacancy, and then it is not unlikely but you may set him going.” Once he was set going, it turned out that he had plenty to say. “If he speaks to you, continue the conversation,” Wollaston advised. “He is full of information, particularly as to chemistry.”
One of the few people that Lord Henry welcomed into the innermost precincts of his life was Charles Blagden, a young scientist he met through the Royal Society who was similar to him in several important ways. He was relentlessly curious, was scrupulous in the conduct of his experiments, and had an indelible memory for facts. But Blagden was also an avid reader, linguist, and conversationalist who maintained a thriving correspondence with researchers and explorers all over the world. “It is scarcely possible that any philosophical discoveries can be made in England,” he once bragged, “without coming to my knowledge by one channel or another.”
Together, the two men forged a mutually indispensable alliance. Cavendish became Blagden’s human Google, answering any query that came up in his own work. The elder scientist’s guiding hand was visible in six of the ten papers that Blagden published in Philosophical Transactions. In return, the reclusive lord was able to keep up with the state of his art without having to schmooze his way through the eighteenth-century equivalent of TED conferences. Through Blagden, his life was richly interwoven with the lives and work of a global community of thinkers who were kept at a safe and comfortable distance.
III
Partly owing to Cavendish’s great wealth, his preference for solitude was often confused with arrogance, selfishness, or disdain. A fellow scientist once descibed him as “the coldest and most indifferent of mortals,” while others characterized him as insensitive, blind to the emotions of others, or mean. But he was not a nasty or vindictive man; he simply had no idea how to conduct himself in public. After a conversation with Blagden about the Monday Club, Cavendish explained his behavior by saying that some men lack “certain feelings,” declining to be any more specific than that. In his diary, Blagden sympathetically descibed his mentor as a man of “no affections” who nonetheless “always meant well.”
The most probing glimpse into the soul of this elusive genius was provided by the chemist George Wilson, who wrote the first full-length biography of Cavendish in 1851 based on accounts by his contemporaries. Appraising his subject’s seeming lack of interest in anything but science, Wilson painted Cavendish’s emotional life as a series of negations: “He did not love; he did not hate; he did not hope; he did not fear . . . His brain seems to have been but a calculating engine . . . He was not a Poet, a Priest, or a Prophet, but only a cold, clear intelligence, raying down pure white light, which brightened everything on which it fell, but warmed nothing.”
Wilson also recognized, however, that Cavendish’s reserve made it possible for him to conduct his research with such single-minded intensity. He was not self-absorbed; he was the opposite. He was wholly engaged in his study of nature, which provided its own form of communion—if not with the souls of other people, then with the hidden forces behind the visible face of things.
Wisely, therefore, he dwelt apart, and bidding the world farewell, took the self-imposed vows of a Scientific Anchorite, and, like the Monks of old, shut himself up within his cell. It was a kingdom sufficient for him, and from its narrow window he saw as much of the Universe as he cared to see.
The kingdom of natural philosophy that Cavendish built on Clapham Common was surely more than “sufficient”—it would have been an extraordinary resource for a scientist in any century. The colleagues invited to join him for a dish of mutton must have seen something amazing: a house transformed into a vast apparatus for interrogating the mysteries of existence.
The first thing a visitor arriving by carriage from London would have noticed was that eighty-foot pole aimed at the sky, supported by huge struts near the base. Contrary to local rumors, it was not an instrument of divination but a towering mount for one of Cavendish’s telescopes. Upon renting the estate in 1785, he immediately sketched out a design for this impressive piece of equipment, a crucial adjunct to his plan to convert the upper floor of the house into an astral observatory, complete with a transit room for recording the positions of stars as they traversed the meridian.
He turned the downstairs drawing room into a lab, installing a furnace, crucible, and fume hood, and stocking it with hundreds of beakers, flasks, pipes, and balances. In an adjoining room, he built a forge. Cavendish’s passion for precision was manifest in the astonishing variety of measuring instruments—barometers, clocks, sundials, compasses, and rain gauges—arrayed throughout the house and grounds. When he took a road trip with Blagden (never for a mere vacation, but, say, to visit a factory to take notes on the production of iron), he affixed a primitive odometer called a “way-wiser” to the wheels of his carriage, so they would know precisely how many miles they had traveled. He also brought along a thermometer to take the temperature of any wells they happened to pass.
As a young inductee in the Royal Society, Cavendish was appalled to learn that the thermometers of his day could differ in their readings of the boiling point of water by two or three degrees. To the roster of his servants in Clapham, he added a dedicated instrument maker. His cabinets were filled with custom-made rulers, scales, triangles, maps, and other measuring devices fashioned of wood and brass. A scaffolding outside the house served as a mount for meteorological instruments. No potential source of data on the estate was wasted—not the wind, the rain, the passages of sunlight through the garden, nor the weight of damp air collecting in the branches of the oaks that stood around the house like sentinels.
Even the front yard was pressed into the service of his quantifying muse. The lawn, according to Wilson, “was invaded by a wooden stage, from which access could be had to a large tree, to the top of which Cavendish, in the course of his astronomical, meteorological, electrical, or other researches occasionally ascended.” Six years after his death, when the last of his gear went on auction after being thoroughly picked over by his colleagues, eleven telescopes and forty-four thermometers were still available.
The contents of a lab cabinet cannot provide an inventory of a man’s emotional life. But in this way too, Cavendish stayed out of view. No revealing diary entries, telling admissions, or confessions of unrequited yearning have come to light in his letters, which are predictably focused on science and the minutiae of his mundane affairs. Humphry Davy—a Byronically charismatic figure whose lectures drew standing-room-only crowds—clearly wanted to forge a friendship with the man he regarded as a mentor, but anything beyond a working relationship was perpetually out of reach. “He gave me once some bits of platinum, for my experiments, and came to see my results on the decomposition of the alkalis,” Davy recalled. “But he encouraged no intimacy with anyone.” After Cavendish’s death, he told Wilson that he considered Cavendish “a great man, with extraordinary singularities.”
Yet the life of a tree-climbing scientist can hardly be considered barren or bereft of fulfillment. He transformed his whole environment into a playground for his keenly focused senses and intellect. Charles Darwin once descibed his own brain as a machine for churning out hypotheses. Cavendish’s was an engine for generating finely calibrated distinctions: this, but not that. His analysis of a single substance could yield volumes of rhapsodic desciption. His modern-day biographers, Christa Jungnickel and Russell McCormmach, wrote in Cavendish: The Experimental Life:
By smell, he distinguished between the various acids and their products. He felt and observed textures: dry, hard, thin jelly, gluey, thick, stiff mud, lump. With colors, he made the greatest number of distinctions: milky, cloudy, yellow, pale straw, reddish yellow, pale madeira, red, reddish-brown, dirty red, green, bluish green, pearl color, blue, and transparent, turgid, and muddy. No poet paid greater attention to his sensations than Cavendish did to his.
One house-sized laboratory alone turned out to be insufficient to meet his research needs. He also turned a handsome three-story brick residence at No. 11 Bedford Square in London into a private library worthy of his alma mater, Cambridge. Contrary to the notion that he was an ungenerous man, Cavendish made his library’s holdings freely available to fellow scholars. Visitors were furnished with a catalog, an on-site librarian to help them navigate the stacks, and a ledger for keeping track of checked-out items. (He dutifully entered the books he took home himself into the ledger.) Decorated all in green like its founder’s beloved coat—with jade curtains, jade slipcovers, and fireplace screens of emerald silk—the library even boasted a prototype copier machine designed by James Watt. Etchings of the moon’s surface were featured on the walls, like an exhibit from the twentieth century. There was even a special “museum” hall where he showed off his beloved collection of rare minerals.
Predictably, what was not on offer at No. 11 was an audience with the proprietor himself. Prospective borrowers were instructed not to disturb Cavendish if they caught sight of him browsing in the stacks and to promptly hasten home with their selections. Obviously he wasn’t much for people, as another socially inept genius, Albert Einstein, observed about himself.
But to descibe Cavendish as a man of no affections, or a passionless man, also misses the mark. His life was devoted to one single, all-consuming passion: the slow and patient increase of the sum of human knowledge. His mind was like a mirror held up to nature, unclouded by bias, rationalization, lust, jealousy, competition, pettiness, rancor, ego, and faith. As Wilson put it:
His theory of the universe seems to have been, that it consisted solely of a multitude of objects which could be weighed, numbered, and measured; and the vocation to which he considered himself called was, to weigh, number, and measure as many of these objects as his allotted three-score years and ten would permit.
The virtuoso act of measurement that inscribed his name indelibly into history is now known simply as the Cavendish experiment. Its goal was as lofty as the apparatus it required was simple. Using four lead spheres, some rods, and a length of wire, he built a device to measure the density of Earth. The key to its cunning design—conceived in rudimentary form by geologist John Michell, who died before he could perform the experiment himself—was the correspondence between the mass of an object and its gravitational force.
Two of the spheres weighed 350 pounds, while the others were comparatively light at 1.6 pounds each. By attaching the lighter spheres to the ends of a wooden rod suspended on a wire, mounting the heavier spheres a few inches away, and setting the rod in motion like a pendulum, Cavendish contrived to gauge the torque of the wire as it oscillated. This, he hoped, would enable him to calculate the magnitude of the force acting on the spheres using Newton’s law of universal gravitation and thus determine the density of the planet. It was an ambitious scheme, and Newton himself was doubtful that it could be successful. The attraction between the spheres, he predicted, would be so minute that it would be swamped by the tidal attraction of Earth’s mass.
Newton was correct that the attraction between the spheres was very slight (just one part in 10 compared to Earth’s gravity), but he underestimated what a man like Cavendish could pull off through sheer dogged persistence. First he built a stand-alone shed in his backyard to isolate the delicate oscillations of the mechanism from stray drafts and vibrations. Then he sealed the apparatus itself in a mahogany box and rigged up a system of pulleys so he could set the pendulum going without touching it. To calculate the forces acting on the spheres, he installed telescopes at both ends of the box, focusing them on vernier scales inside the chamber that enabled him to calculate the wire’s torque to within 0.01 inch.
Working solo, he began his rounds of measurement at the height of summer on August 5, 1797. (He was sixty-six years old by that point.) Over and over, he set the pendulums swinging, took his position at the telescopes, and recorded his observations in a notebook. For months, he diligently applied himself to this single task, finally wrapping up his epic series of trials in May.
Ironically, Cavendish made a minor error of addition in his report for Philosophical Transactions, throwing off his published results by a fraction of a percent. But the figure he came up with was so close to the actual density of Earth that no researcher could best it for another hundred years. As a side benefit, his experiment indirectly provided the first estimate of the gravitational constant, known among physicists as “Big G,” which also turned out to be astonishingly accurate. Cavendish’s experiment is now recognized as the inaugural moment of modern physics, laying the groundwork for centuries of breakthroughs to come, including Einstein’s theories of relativity.
It was also his last major foray in science. On February 24, 1810, Cavendish succumbed to an inflammation of the colon with no panic or drama, leaving the lion’s share of his fortune to his nephew, George. Even in dying, he guarded the solitude that had enabled him to accomplish so much. His final instructions to his servants were to summon his young heir only after he had drawn his last breath and to leave him alone so that he could spend his final moments in peace.
A few days after Cavendish’s death, Blagden paid tribute to his mentor by descibing him as a “true anchor” who could “always depend on knowing what was right for him.” It was a fitting eulogy for a man who lived completely on his own terms but benefited everyone by doing so.
The great house in Clapham is gone now, replaced in 1905 by rows of brick villas. Nightingale Lane is home to young entrepreneurs who take the Northern Line to central London each morning, breezing past kebab shops and chippies while chattering away on their smartphones—the perpetually humming, information-rich, intimately interconnected world that Cavendish made possible by serving his quantifying muse in solitude.
His last experiment brought him more fame after death than he ever sought in his lifetime. For decades after his interment in the family crypt in the All Saints’ Church north of London, mothers would pause reverently before his yard, point to his abandoned shed, and tell their children, “On this spot, a man named Henry Cavendish weighed the world.”
IV
The extraordinary singularities of this solitary pioneer were a source of perpetual puzzlement and frustration to his colleagues. In his diary, Wilson alluded to “talk about Mr. Cavendish, & explanation of character.” But the theories proposed to explain his eccentricities over the years have often felt provisional or incomplete, as if some crucial data point was missing.
The word invoked most often to make sense of his behavior is shy. His contemporaries descibed him as “excessively shy,” “peculiarly shy,” even “shy and bashful to a degree bordering on disease.” But mere shyness doesn’t explain the overall oddity of his conduct, such as his adherence to rigid timetables, his insistence on wearing only one outfit for decades, and his habit of listening obliquely to conversations rather than talking face-to-face. The introduction of Jungnickel and McCormmach’s magisterial biography is titled “The Problem of Cavendish,” as if the man himself was one of the knotty conundrums that he spent his life trying to solve. In a follow-up book, McCormmach confessed that he had not yet laid the enigma to rest:
These many years later, I still look for a fuller understanding, which I equate with explanation . . . Without an understanding of Cavendish’s behavior, he appears simply strange, an object of curiosity at best, of moral judgment at worst, drawing pity or scorn. To leave him that way unnecessarily is a shame. He was an outstanding scientist, and one of the most baffling personalities in the history of science. A fuller understanding of him benefits both his biography and the history of science.
A famous story made the rounds that Cavendish once saw his fellow philosophers clustered around a window, where he thought they were looking at the moon. But after “bustling up to them in his odd way,” he realized they were admiring a beautiful woman, and turned away saying “Pshaw!” With little more evidence than this and his run-in with the maid, some of his peers ventured to suggest that he had a pathological fear of women. But the Duchess Georgiana of Devonshire, who had a keen interest in chemistry, was one of the few people whom he regularly kept abreast of his experiments.
Psychoanalytically minded pundits have speculated that Cavendish may have been traumatized as a child by the death of his mother, Lady Anne de Grey. But she died before his second birthday, and his brother, Frederick, grew up to become an affable extrovert. As Wilson put it:
Hundreds of youths have been . . . motherless, as Cavendish was, and have, nevertheless, grown-up to be warmhearted, generous, and even enthusiastic men. Frederick Cavendish was exposed to the same influences as his brother Henry, but became, notwithstanding, an exceedingly cheerful, genial, and benevolent, though somewhat eccentric man. The peculiarities, indeed, of a character like Henry Cavendish’s, must be referred much more to original conformation, than to anything else.
A thoroughgoing appraisal of his “original conformation” would require a detailed accounting of his psychological development, but records of his early years are scant. Blagden said that Cavendish’s preference for solitude had been established at a very young age: “His habits had, from early life, been secluded.” One of the few things known about his childhood is that his entry into Hackney Academy, a private boarding school north of London, was delayed for four years; the standard age of enrollment was seven, but he was homeschooled by tutors until he was eleven, a style of education that had fallen out of favor among upper-class families decades earlier.
Some historians have proposed that Henry didn’t get along with his father, Lord Charles, a prominent Whig and noted natural philosopher himself. But Charles—the Royal Society’s resident expert on thermometers—showed every sign of being lovingly devoted to his son. When Henry was a boy, Charles invited him to conduct measurements of Earth’s magnetic field in the garden of the house they shared for thirty years on Great Marlborough Street in London. After Henry returned from Cambridge, his father built him a lab so that his life’s work could begin in earnest. Charles surrounded him with potential mentors by hosting Royal Society dinners, channeling his son’s intellect into science, which became the one true love of his life. Finally, his last gift to him—a sizable fortune—enabled Henry to live for the rest of his life in a private world that was perfectly suited to his needs.
Cavendish was clearly an extraordinary man, fortunate enough to be born to a family of extraordinary means. If his father had been a brakeman or a miner, one of the greatest scientists in history might have ended up on a ward at the Bethlem Royal Hospital (commonly known as “Bedlam”), enduring the regimen of cold baths in vogue for the treatment of “withdrawn” patients at the time.
Few Nobel laureates of either gender have much resembled the Renaissance ideal 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. In many ways, the father of modern physics and the awkward prodigy who helped lead the field into the quantum era were kindred spirits born two centuries apart.
V
Raised in humbler circumstances than his posh Georgian predecessor, Paul Dirac grew up in Brighton, the son of a librarian and a tyrannically strict French teacher. His classmates remembered him as a tall, quiet, “un-English-looking” boy in unfashionable knickerbockers who virtually lived in the library, maintaining a “monomaniacal focus” on science while seeking refuge from his father’s pedantry in adventure novels and comic books.
His uncanny aptitude for math showed itself early. A teacher once sent young Dirac home with a set of problems designed to keep him occupied all evening and was shocked when he had solved them by the afternoon. Even as a boy, he preferred a life of contemplation to the hurly-burly of the schoolyard. When he was nine, his teachers at the Bishop Road School awarded him with a telling prize: a copy of Daniel Defoe’s Robinson Crusoe, the fictional autobiography of a castaway marooned for twenty-eight years on a remote island.
Lacking an aristocratic father to introduce him to potential mentors in science, Dirac trained at a technical school to become an electrical engineer. In his first year, he distinguished himself so highly that Cambridge offered him a scholarship to its prestigious math program. At St. John’s College, his diffidence and taciturnity became “the stuff of legend,” writes Graham Farmelo in a biography of the physicist called The Strangest Man. The newly matriculated Dirac would sit stiffly in the dining hall, hesitant to ask the person eating beside him to pass the salt, and greeting every question posed to him with blank silence or a stark yes or no. Incapable of bluffing his way through the protocols of polite conduct, he came across as cold, rude, disinterested, or uncaring, though he didn’t intend to.
A classmate once tried to break the ice with him by casually remarking, “It’s a bit rainy, isn’t it?” Dirac’s strictly empirical response was to march over to the window, peer out, return to his chair, and reply, “It is not now raining.” Inspired by his extreme verbal parsimony, his fellow students at St. John’s invented a unit of measurement for the number of words that a person might utter in conversation, christening the minimum rate one “Dirac”—one word per hour. But like Cavendish lurking in the shadows at the Monday Club, he would often eavesdrop inconspicuously as his peers swapped stories.
Oblivious to contemporary modes of dress, Dirac wore cheap, unstylish suits in all weathers until they were threadbare, even after securing a generous salary as the Lucasian Chair of Mathematics at Cambridge (the position later held by Stephen Hawking). His mother practically had to beg him to buy a winter coat so she could stop fretting about his health. Though he seemed impervious to freezing temperatures, he was acutely sensitive to sounds—particularly the din of barking dogs, which were permanently banned from his household. Dirac’s motor skills were notoriously poor; a classmate descibed his method of wielding a cricket bat as “peculiarly inept.” Yet he was as devoted as Cavendish was to taking long walks on a regimented timetable, holding his hands behind his back as he efficiently ticked off the miles in his “metronomic” stride.
In an era when physicists like Einstein and Max Planck were fêted as international heroes in the press, Dirac had no interest in being a public figure. He routinely turned down honorary degrees because he felt they should be rewarded strictly on merit, and he refused an offer of knighthood because he didn’t want strangers chummily referring to him as “Sir Paul” rather than “Mr. Dirac.” Upon winning the Nobel in physics with Erwin Schrödinger in 1933, he told a reporter from a Swedish newspaper, “My work has no practical significance.”
His life path diverged from Cavendish’s in at least one important way: he married a bubbly Belgian extrovert named Margit Wigner—nicknamed “Manci”—who urged him to supplement his pop-culture diet of comic books and Mickey Mouse cartoons with novels and an occasional foray to the ballet. (As Farmelo puts it, “He had wed his anti-particle.”)
The newlyweds honeymooned in Brighton, where the love-struck groom rigged up a camera with a string so he could click the shutter himself. In one shot, the gawky physicist reclines beside his bride on the beach, attired in his usual three-piece suit, with a thicket of pencils sprouting from his pocket. “You have made a wonderful alteration to my life. You have made me human,” Dirac gushed shortly after the wedding. This turned out to be an ongoing job. When Manci complained that he habitually ignored her questions, he pasted her queries into a spreadsheet and filled it in with his replies.
As a theoretical physicist, Dirac didn’t need a lab to do his work; all he needed was a pencil, because his most finely calibrated instrument was his mind’s eye. When he was young, a teacher told him that she felt he was cogitating not in words but in “another medium of forms and figures.” He once descibed his own thoughts as essentially “geometrical.” While visiting an art gallery in Copenhagen, he turned to fellow Nobel laureate Niels Bohr and said that he liked a certain painting because “the degree of inaccuracy is the same all over.” He told journalists who asked him to make sketches of his highly abstract concepts for their readers that they would melt away like “snowflakes” if he tried.
The breakthrough that assured him of his own eponymous place in history is known as the Dirac equation. Worked out on scraps of paper at a schoolboy’s desk in his sparsely furnished room at St. John’s in less than a month in 1927, his formula bridged a seemingly impassable gulf in physics by reconciling quantum mechanics and Einstein’s special relativity in a single concise line of variables. His equation also implied the existence of a previously unsuspected form of particle—antimatter—three years before a scientist named Carl Anderson glimpsed the ghostly arcs of positrons passing through a lead plate in his lab.
Dirac made only one major miscalculation in the course of his career: underestimating the practical applicability of his work. The relationships between matter and energy that he descibed made possible the development of semiconductors, transistors, integrated circuits, computers, handheld devices, and the other innovations in microelectronics that ushered in the digital age. By capturing the ephemeral snowflakes in his mind in the universal language of mathematics, this man who found communication so arduous made it much easier for everyone else to communicate.
But even in a field in which absentminded professors are the rule rather than the exception, Dirac’s colleagues were left unsettled and confused by his behavior. Einstein confessed, “I have trouble with Dirac. This balancing on the dizzying path between genius and madness is awful.” Bohr claimed that Dirac was “the strangest man” he had ever met, furnishing Farmelo with a title for his biography. Like Cavendish, he was a walking riddle to everyone who crossed his path.
VI
It’s hard to imagine the state of the modern world if these two remarkable scientists had never lived. Many aspects of life that we currently take for granted might never have been invented. Both men may have wondered at times if they had accidentally been born on the wrong planet, among chatty, well-intentioned creatures who wasted precious time trying to impress, flatter, outwit, and seduce each other. But their atypical minds were uncannily suited to the work they were born to do. They lived their lives in ways that were as precise, ritualized, and methodical as their experiments.
In 2001, neurologist Oliver Sacks proposed that he had uncovered the elusive solution to the problem of Cavendish in a condition that had fascinated him for decades. Writing for his peers in the journal Neurology, he observed that accounts of the reclusive lord’s seemingly inexplicable idiosyncrasies—his “striking literalness and directness of mind, extreme single-mindedness, [and] passion for calculation and quantitative exactitude . . . coupled with a virtual incomprehension of social behaviors and human relationships”—closely resembled desciptions of adults with a type of autism called Asperger’s syndrome, first descibed in America in the 1994 edition of the Diagnostic and Statistical Manual of Mental Disorders. Sacks also pointed out, however, that it was precisely these qualities that made Cavendish such a brilliant and prolific researcher. His singularities were inextricable from his genius.
When Sacks made this provocative suggestion, it was hard to remember an era when autism wasn’t a frequent topic of conversation, even among people who had no personal connection to the subject. But enormous changes had taken place in an astonishingly short time. Just fifteen years earlier, mothers of autistic children often had to gently correct neighbors who thought they’d said their son or daughter was “artistic.” The few pediatricians, psychiatrists, and teachers who read about the obscure condition in a textbook could safely assume that they would get through their entire careers without having to diagnose a single case. Sacks himself had played a role in this sea change by making the distinctive traits of autism recognizable to his colleagues in his sensitive portrayals of artist Stephen Wiltshire, the “calculating twins” George and Charles Finn, and industrial designer Temple Grandin in An Anthropologist on Mars and The Man Who Mistook His Wife for a Hat. He also served as an advisor to Dustin Hoffman when he developed the role of Raymond Babbitt for Rain Man, which provided audiences worldwide with their first glimpse of an adult identified as autistic.
By the time the burly British-born neurologist turned his diagnostic eye on the father of modern physics, the formerly obscure condition was well on its way to becoming a national obsession. Parsing the faintest signs of gaze aversion and self-stimulatory rocking in nerdy celebrities like Bill Gates had become a kind of hipster parlor game, while the increasingly convenient phrase “on the spectrum” telegraphed a whole constellation of quirks and eccentricities. At the outset of his article on Cavendish, however, Sacks stated firmly that he was not just jumping on the bandwagon of retrodiagnosing famous geeks from history with a trendy disorder. “There has been some tendency recently to claim Einstein, Wittgenstein, Bartok, and others as exemplars of autism,” he wrote, dismissing the justifications for these claims as “very thin at best.” But in the case of Cavendish, he found the evidence for an Asperger’s diagnosis “almost overwhelming.”
Dirac biographer Graham Farmelo came to a similar conclusion after a process of cautiously weighing the alternatives. “Nearly all” of the Dirac stories that physicists have been telling each other for years, he wrote in The Strangest Man, “might also be called ‘autism stories.’” He says that he had no intention of venturing a diagnosis when he began researching the great man’s biography. “Only after talking with about thirty people who knew Dirac very well (including two members of his close family) did I conclude that his behavior was so singular that I needed to say something about it,” he told me. “My conclusion was that he very clearly passed every criterion for autistic behavior.”
Physicist Freeman Dyson took Farmelo to task in the New York Review of Books for his speculative diagnosis of a man his wife found “friendly and amusing” when she went for a walk with him in Princeton. “Autism was until recently a rare disease, characterized by mental disorders that made the patient incapable of a normal life,” he wrote. “The main symptom was a failure to achieve or understand social relationships with other human beings. If Dirac was autistic, then the word ‘autism’ must have a different meaning.”
He had the right to be skeptical. By then the word autism had acquired a different meaning than the one that he was used to. But this radical reframing of the diagnosis had been negotiated in niche journals and closed-door meetings of subcommittees at the American Psychiatric Association, far from public view. The effects of these momentous decisions were still rippling outward to a world unprepared to make sense of them.
—
ONE THING IS CERTAIN: if the Wizard of Clapham Common had managed to construct a time machine in his backyard, beaming himself directly to the waiting room of child psychiatrist Leo Kanner after his announcement of the discovery of autism in 1943, the brusque, cigar-puffing clinician would have sent him down the hall to another clinic. Adults weren’t on Kanner’s radar at all until much later, and the notion that his young patients might grow up to become physicists or chemists would have seemed absurdly optimistic. A more likely prognosis was a lifetime of custodial care in a state hospital: Raymond Babbitt’s fate in Rain Man.
Even now, few people outside a small circle of cognitive psychologists know that the adoption of the spectrum model of autism by the psychiatric establishment in the 1980s represented a decisive defeat for the father of the diagnosis. For decades, Kanner maintained that his syndrome was monolithic by definition, limited to childhood, and vanishingly rare. The notion of an influential economist like Tyler Cowen touting the virtues of having an “autistic cognitive style,” a Hollywood star like Daryl Hannah coming out in midlife about her diagnosis, or a Fields Medal–winning mathematician like Richard Borcherds musing about his autistic traits in the press would have seemed irresponsible to him, if not downright delusional. (Even comedian Jerry Seinfeld eventually got into the act, telling Nightly News host Brian Williams, “On a very drawn-out scale, I think I’m on the spectrum. Basic social engagement is really a struggle. But I don’t see it as dysfunctional. I just think of it as an alternate mind-set.”) To Kanner, autism was not merely an eccentric cognitive style or an alternate mind-set. It was a tragic form of childhood psychosis, akin to schizophrenia, caused by inadequate parenting. It was certainly nothing to be proud of.
The architect of the spectrum model was the mother of an autistic child herself, a British psychologist named Lorna Wing. Kanner would have instantly recognized her daughter Susie as a member of his rare tribe, but Wing well understood the challenges faced by families of children who had been excluded from a diagnosis on his terms. By overturning his conception of autism as a rare, inevitably devastating, and homogeneous disorder, she made it possible for tens of thousands of children, teenagers, and adults to gain access to the educational placements and social services they deserved, for the first time in history.
—
BUT WING’S QUIET VICTORY over the clinician who had dominated the field for more than forty years had unanticipated consequences. One was the emergence of gifted autistic adults like Temple Grandin into public life. As they began to articulate their experiences of growing up, they found commonalities that challenged even many of Wing’s long-held assumptions about autism, such as the notion that people like her daughter lack empathy. Instead of seeing themselves as psychotic or intrinsically disordered, they came to take pride in their eccentricities, learning to see their minds as “different, not less,” as Grandin put it.
Another unintended effect of the adoption of the spectrum model, however, was the reaction of concerned parents to a steep rise in estimates of autism prevalence all over the world. Few children diagnosed under Wing’s new criteria seemed destined to become reclusive Nobel laureates, socially awkward Hollywood stars, or the next Bill Gates. Many of them struggled to acquire simple spoken language and rudimentary self-care skills and were prone to seizures and outbursts of self-injurious behavior. Even growing up to become the real-life equivalent of Raymond Babbitt (who was invariably descibed as a rare and extraordinarily capable “savant,” though he was judged incapable of surviving outside of an asylum) seemed out of reach for many kids, particularly in the first difficult years of their lives.
And while the scope and understanding of the diagnosis changed drastically, the attitudes of many clinicians and educators were still catching up. Autism was widely considered a universally devastating condition, and parents were routinely told to prepare themselves for the inevitable day when their son or daughter would have to be shipped off to an institution.
In the shadow of the rising numbers, stories began to circulate on the Internet about babies that seemed to be developing normally until they received a routine immunization for measles, mumps, diphtheria, or whooping cough. Parents descibed the light going out of their children’s eyes at the moment the needle punctured their skin, followed by violent convulsions, piercing cries, fever, and the sudden onset of severe digestive disturbances. Rumors of a new and terrifying form of autism, marked by dramatic regression, raced through online forums. Parents referred to their sons and daughters as having been kidnapped, as if a thief—dressed in a pediatrician’s white coat—had stolen them away in the night. Meanwhile, public health officials, caught off guard by the soaring prevalence estimates, and alarmed by the growing number of parents deciding to opt their children out of mandatory vaccination programs, tried to tamp down panic with cautious, qualified terms of art like broadened diagnostic criteria, heightened public awareness, and improved case finding. To a worried mother searching her son or daughter’s face for a telltale failure of eye contact, they may as well have been speaking Latin.
Parents of children born in the last decade of the twentieth century had to make their way forward through a maze of conflicting information. Was autism a congenital and incurable developmental disorder rooted in the complexities of the human genome, or the toxic by-product of a corrupt medical establishment driven to seek profit at all costs? Should they invest their energy in fighting daily battles with local school boards, insurance companies, and other byzantine bureaucracies, or pursue the myriad avenues to “recovery” for their children, touted by groups like Defeat Autism Now! and Talk About Curing Autism?
The parents in these groups were often caricatured as poorly informed, anti-science “denialists,” but they were generally better acquainted with the state of autism research than the outsiders presuming to judge them. They obsessively tracked the latest developments in the field on electronic mailing lists and websites. They virtually transformed their homes into labs, keeping meticulous records of their children’s responses to the most promising alternative treatments. They believed that the fate of their children’s health was too important to the alleged experts who had betrayed and misled families like theirs for decades. Motivated by the determination to relieve their children’s suffering, they became amateur researchers themselves, like the solitary man who calculated the density of the earth in his backyard with the help of his global network of correspondents.
Two
In a room on a high ridge overlooking the Santa Cruz Mountains in California, Leo Rosa is waking up. The sun breaks through a bank of coastal fog, filling his window with streaks of orange and crimson. A cherubic eleven-year-old with hazel eyes under a tuft of russet curls, he climbs out of bed to give his father a hug.
Leo’s father, Craig, produces science videos for KQED, a public TV station in San Francisco. Shannon Rosa is a blogger, editor, and software consultant. Each morning, they take turns helping their son get ready for school. The first thing that Leo does each day is read a list of icons taped to his door, which Shannon made for him by downloading and laminating clip art from the Internet. This list—his “visual schedule”—is written in a pictorial language that is easier for his mind to absorb than words. An image of a boy putting on his shoes prompts Leo to get dressed, followed by the likeness of a toothbrush, and then an icon of a boy making his bed.
Leo’s visual schedule parses the sprawling unpredictability of an eleven-year-old’s life into a series of discrete and manageable events. This helps him regulate his anxiety, which is a challenge for people on the spectrum at every age. Physical traces of his struggle to channel the unruly energy flowing through him are visible throughout the Rosa household, but only if you know just where to look. The white posts along the railing on the second floor are freshly painted, because Leo splintered them one day, enjoying the soothing feeling of deep pressure as he wedged himself between the railing and the wall. There are thin cracks in the lid of an antique camphorwood chest at the foot of Craig and Shannon’s bed, because the chest made a perfect launching pad for experimental flights toward their mattress.
The Rosas have adapted their lives and their living space to create as safe and comfortable an environment for Leo as possible. The location of the house—on a cul-de-sac at the brushy summit of a barely paved mountain road in an unincorporated area of Redwood City—is far enough away from traffic that they don’t have to worry too much if Leo slips out the door on an unscheduled outing. The layout of the building—a two-story ranch house with a floor-to-ceiling space at the center, which the Rosas keep clear of furniture—enables Leo to pace furiously in circles, jump up and down, or propel himself across the floor on his scooter board without bashing into walls or sharp edges. When nothing else but an hour of intense, pounding physical activity will do, there’s a trampoline in the backyard. (Friends in the city have made similar accommodations for their kids by getting creative with inexpensive beanbags and trapezes.)
The open-plan arrangement of the house also lets the Rosas keep a watchful eye on their son and enables him to know where they are. Lying next to Craig in bed at night, Shannon can listen to the sounds that Leo is making in his room next door. If she hears him softly singing himself to sleep, she knows he’s okay.
—
A FRAMED SHEET OF paper by the front door is titled “Questions to Ask Leo.” Shannon designed this list—What is your name? How old are you? What is your address? What is your big sister’s name? What is your little sister’s name?—to serve two purposes: to encourage shy visitors to initiate conversations with her son, and to help Leo learn to verbalize things that he knows but isn’t always able to communicate. Leo can understand many of the phrases that his parents say to him (in clinical terms, he has good receptive language), but expressive speech does not come easily.
On a good day, Leo might say about forty words, mostly nouns. “Pizza for dinner,” he’ll say brightly. “Costco.” Some days, Leo hardly says anything at all, though no one could accuse him of being unexpressive. He has his own versatile lexicon of nonverbal sounds, song fragments, and catchphrases that he uses to communicate with the people he knows and trusts.
When Leo is happy, he bursts out in riffs of scat singing, making up little melodies as he goes. When he’s basically content but feeling restless, he makes a sound like tikka, tikka, tikka. If he’s more anxious than that, he makes a sound like Jimmy Durante: “Atch-cha-cha!” A sudden burst of happiness can inspire Leo to whirl his arms around and gallop in circles shouting, “Whoop! Whoop! Whoop!” When he’s tired, he makes a soft keening noise. And when Leo is hungry, he just sobs his heart out. After visiting an aquarium in Seattle with his family, he added the chirps of a beluga whale to his repertoire of echolalia (the term of art for the way that autistic people sample the speech they hear around them and repurpose it for their own use).
When Leo is in the car with his mother and doesn’t know where they’re going, he might say, “We’re not going to pick up Kianna”—the name of a girl in preschool that he carpooled with many years ago. When he really wants to climb something but knows he’s not supposed to (though in truth he may have climbed it already), he’ll announce: “No climbing!” When Leo is so angry that he wants to push somebody but also wants to demonstrate to his mother that he has good self-control, he’ll say: “Don’t want to push.”
And when Shannon is driving past his favorite doughnut shop, he’ll steel himself against disappointment by saying something that she muttered under her breath a long time ago: “We’re not going to get any fucking doughnuts today.” Shannon doesn’t use that kind of language casually in front of her two daughters, Zelly and India. But the moment that she heard Leo echo that phrase, she realized that her son is always listening, even when he seems to be off in his own world.
—
IN A CLUTTERED ROOM down the hall, Leo’s sisters are also getting ready for the day. Zelly (short for Gisela, the name of Craig’s aunt) already has the poised, self-possessed air of the thoughtful young woman she’s becoming at thirteen. In a family of brazen eccentrics, she’s taken on the job of being the “normal” one. India, who is five years younger, exudes her own potent brand of charisma, but it’s more antic and subversive, with mischief and drama perpetually brewing in her bright green eyes behind thick glasses. While Zelly is generally reserved, India will walk right up to a stranger in a restaurant and say, “My, what a pretty dress you have!” She instinctively knows how to make herself the center of attention and work a crowd. As the Rosa girls will readily inform you, they’re getting a little too old to sleep in the same room. “My sister is a total PITA,” India whispers when we’re alone, using the family-friendly acronym for pain in the ass. But five minutes later, she and Zelly are doing gymnastics on the floor together. Their yearning for more personal space is trumped by their fierce loyalty to their brother.
While eating breakfast with his sisters in the kitchen, Leo suddenly jumps down from his chair as an alarming expression—between terror and exhilaration—takes possession of his face. He bolts for the door but his father doesn’t flinch; instead, Craig calls after him in his softest voice, “Where ya goin’, buddy?”
Leo immediately sits down again and resumes eating as if nothing had happened. His first spoonful of yogurt this morning contains a crushed tablet of Risperdal, an atypical antipsychotic developed for the treatment of schizophrenia in adults. His parents don’t like the idea of giving him this powerful drug, but for now, it seems to be helping him get a handle on his most distressing behavior, which is teasing and bullying India. Leo has never quite forgiven her for being an unexpected intrusion into a world that he was just getting used to himself. (On the day that Shannon brought India home from the hospital, his response was to march up to his mother and announce, “Bye-bye baby!”) One of the downsides of the drug is that it amplifies Leo’s already considerable appetite. His uncanny ability to snatch food from distant plates has earned him a family nickname: the Cobra. When Shannon brings bowls of oatmeal to the table, India quietly slides hers out of Cobra range and mutters under her breath, “This is mine.”
Smells of coffee and toast waft through the kitchen. Leo starts banging his bowl against the counter, but India doesn’t even look up. Sitting at the table in a frilly white dress and sparkly slippers (“I like shiny things,” she whispers, “I’m a magpie!”) India looks like a miniature princess from a grander civilization, accepting the hospitality of common folk who are doing the best they can.
Suddenly Leo jumps up from the table again and says to his father, “Green straw?” It is not yet time for his first green straw of the day, but he will get one before the school bus pulls into the driveway—one of tens of thousands of wide, bright green Starbucks straws that Leo has used over the years for the purpose of stimming (self-stimulation), one of the things that autistic people do to regulate their anxiety. They also clearly enjoy it. When nonautistic people do it, it’s called fidgeting and it’s rarely considered pathological.
A red straw from Burger King can occasionally fit the bill, or a blue one from Peet’s. Clear straws from Costco just don’t cut it. But a green straw from Starbucks is Leo’s Platonic stim. If Shannon allowed him to do so, he would take a green straw to bed with him, or even better, a pair—one between his lips and the other in his toes. He would stim in the bath, on the toilet, and jumping on the trampoline.
Leo’s fascination with straws is a wonder to behold. First, he tears the coveted object free of its paper wrapper; then he wets his lips and starts nibbling along its length, palpating the stiff plastic to pliability; finally, he masticates it to a supple L-shaped curve. All the while, he’s twiddling the far end in his fingers, making it dance with a finesse that would be considered virtuosic if he was performing sleight-of-hand tricks. Watching Leo’s Ritual of Straws is like seeing one of W. C. Fields’s vaudeville routines with a hat and cane run at hyperspeed.
The Rosas let their son indulge in his passion for green straws within certain limits. But Shannon quickly realized that jamming a few extras into her purse at the mall would never result in enough to meet his needs. She did what she often does now when she’s coping with some aspect of Leo’s behavior that proves unexpectedly difficult to manage: she turned to her online posse. She put the word out on her blog that she was looking for volunteers for a grassroots effort dubbed L.U.S.T.—the League of Unrepentant Straw Thieves.
The agents of L.U.S.T. are dedicated and sneaky. They keep Leo well supplied with contraband. They are experts at slipping out of restaurants with a fully paid bill (and generous tip) to distract from the extra straws in their pockets. L.U.S.T. agents have no problem hopping into the car with me and Leo—even on a Thanksgiving evening—and cruising the Starbucks stall in a local grocery store for a few pieces of The Good Stuff, because they know that those straws might make the difference between a successful and an explosive dinner.
The covert forces of L.U.S.T. descended on the espresso bars and drive-throughs of the South Bay en masse. Owners of local Starbucks franchises may have wondered why an apparently inexplicable run on Frappuccinos was not reflected in the day’s total at the register. One particularly hip barista allowed Shannon to liberate a fistful of the primo green from her corporate overlords in Seattle out of a stock closet.
Operation L.U.S.T. was a triumphant success. Leo got what he needed, and having an abundant stash of the Good Stuff around the house inspired him to an unprecedented flood of expressive language. Admittedly, this language was very focused: “New straw! New GREEN straw! I want a new straw! Mommy, I want a new straw, PLEASE! Mommy! MOMMY!” By working with Leo’s home-program supervisor, Shannon learned that it was possible to strike a balance with her son by reassuring him that his green-straw jones would be gratified at regular intervals. An L-shaped icon was promptly incorporated into Leo’s visual schedule.
A few years ago, Shannon pulled the family minivan up to the entrance of Zelly’s summer camp, when Leo, with his usual exquisite timing, made it known that he had to pee. There were no bathrooms in the vicinity, so Shannon escorted her son behind a convenient bush and urged him to do his business as India and her pal Katie pretended not to watch. She assured the girls that peeing on school grounds was tolerated under certain circumstances, and even kind of cool. “Sometimes, when you’re a boy, it’s great,” she said. “You can pee in bushes all over the world!”
“And sometimes, when you’re a girl, you have a brother with autism,” India shot back. “And then your whole world changes.”
II
Raising Leo has transformed the Rosas’ world in ways that they couldn’t have imagined. One of the most common misconceptions about autism is that it drives families apart. (It’s a pernicious myth perpetuated by the media: divorce rates are no higher for families like the Rosas.) But helping Leo become the best Leo he can be has brought the family closer, binding them into a tight circle of love and support around their boy. When Zelly was ten, she wrote a poem:
Leo
My brother
Leo is different
Yet I love him
still. Hits, grabs elbows,
chews on straws. I
cope with all of this
For I am his big sister.
The day-to-day effort of ensuring that Leo gets the respect and support he deserves has also brought the Rosas closer to other families. Many of their friends are either parents of kids with developmental disabilities, on the autism spectrum themselves, or both. These friends don’t flinch when Leo bursts out of line at the museum to beat his chest and howl like Tarzan, and they don’t cast withering looks in Shannon’s direction when he has a meltdown at the mall. They understand why, in movie theaters, she and Leo always sit in the last row of seats close to the door.
These friends speak the initiated language of special-needs parenting—an alphabet soup of acronyms like OT (occupational therapist) and SLP (speech-language pathologist), and nouns that have evolved into verbs, like tantrumming and toileting. They know how to work effectively with teachers to put together an IEP, an individualized education program—a plan outlining a set of learning goals for a single child. Until Congress passed the Education for All Handicapped Children Act in 1975 (renamed the Individuals with Disabilities Education Act in 1990), kids with all sorts of disabilities were routinely denied access to an education. Children with autism were particularly vulnerable to institutionalized prejudice because most psychologists believed they were incapable even of rote learning. This theory was debunked in the 1970s, but subtler forms of discrimination persist. Several couples in the Rosas’ social circle have been forced to sue their local school boards to obtain the education for their kids legally mandated by IDEA.
But raising Leo has required the Rosas to modify some daydreams they had when they were young. When Shannon was in her twenties, producing digital atlases at Electronic Arts and the Learning Company—the perfect job for a self-professed “cartography geek”—she used to fantasize about immersing herself in foreign cultures and exotic climes with a boyfriend who wouldn’t want to laze around the pool while she went scuba diving through the Chandelier Caves. Paying tens of thousands of dollars a year for Leo’s behavioral therapy, which was not covered by Craig’s health insurance until recently, made some destinations seem even farther away. But the Rosas decided early on that they would not stop going to museums, movies, and restaurants because they have an exuberant boy who occasionally feels like he needs to tear his clothes off. They’ve let their friends know that they’re eager to be invited along on family activities—even if they need to make arrangements, even if they have to slip out the back door at some point, even if they occasionally have to say no.
The waiters at their favorite Indian restaurant in Redwood City know that bringing a steaming plate of naan (Leo’s favorite) to their table with dispatch is a good idea. At the café where Craig and Shannon have been enjoying breakfast on Saturday mornings together since before their kids were born, the staff encourages Leo to practice his social communication by asking him, “How are you?” and really listening when he answers. The owners of a local bakery never let the Rosas apologize for Leo’s shouting when the buttery aroma of croissants fresh out of the oven launches him into a paroxysm of joy. They just shrug and say, “That’s what kids are like.”
—
AT THE END OF a long day in the editing suite at KQED, Craig settles onto the couch beside Leo to watch Hayao Miyazaki’s enchanting animated tale My Neighbor Totoro. It’s not the first time they’ve seen the film together, or even the five hundredth: nearly every night for the past decade, Leo has concluded his activities for the day by saying, “Totoro!”
That’s Craig’s cue to boot up his old VHS machine and join Leo on the couch. A few years ago, Disney bought the rights to the film and released a DVD version with dubbing that was more faithful to the original Japanese dialogue. Inevitably, Leo deemed the new version unacceptable, so the Rosas have held on to their ancient VHS deck as the technology around it evolved into a home theater that would have seemed like science fiction when the film came out in 1988.
“If you have to get hooked on something, at least this film is pretty good,” Craig chuckles good-naturedly as his son is transfixed by the scenes they’ve watched together thousands of times. To stay engaged, Craig tries to notice one previously unseen detail each night that slipped past him before.
But the film has also turned out to be a valuable tool for aiding his son’s language development. When Leo was younger, if he was introduced to someone new, he would cry out, “It’s Mei!” like the little girl announcing her arrival in the film. Then he started making comments that aren’t in the film, like saying “Chopping broccoli” during a cooking scene. Now when his mother walks into the kitchen, he’ll announce that it’s time for chopping broccoli. What began as a mere echo evolved into a scripted interaction, and then the script became Leo’s way of engaging the world.
Tonight’s Totoro rerun is brief because Leo is sleepy after a day at the Morgan Autism Center, the school in San José where he attends small classes led by teachers who are deeply devoted to their work. He jumps off the couch and says, “Upstairs!” Craig replies, “What’s upstairs, bud?” Leo chirps, “Bed!” The exchange is so familiar that it unfolds with the comforting rhythms of a litany. And off they go.
A few years ago, Shannon was interviewed on the radio with an autism expert from a local medical school. When the microphones were shut off, the psychologist looked at her quizzically and said, “You sure look happy for the mother of an autistic kid.” (This was news to Shannon, who characterizes herself as grumpy.) She and her husband do seem generally content these days, but reaching this point of equanimity was not easy. They earned it over the course of a long journey that included many detours and heartbreaking reversals, along with miles of pushing onward in the dark toward an uncertain destination.
III
For the first few months after he was born, Leo seemed like a typically developing baby, if an exceptionally cheerful one. He nursed normally, slept regularly, and frequently made eye contact with the people around him. Often, for no apparent reason, he would start giggling. Like a seed sprouting where no one could see it, Leo’s difference was initially invisible. His diagnosis was the product of a slow and careful accretion of observations and intuitions—like his parents’ gradual process of falling in love.
Craig and Shannon met in the late 1980s through a mutual friend at the University of California in Los Angeles. Craig was a gregarious soccer player and performance-art geek who grew up on a heady brew of science fiction, Omni magazine, and New Wave rock and roll. Shannon was the intriguingly remote Goth girl with purple hair, fishnet stockings, and monkey boots who made sandwiches at the dorm deli. A couple of years passed before they even had a conversation.
During this time, Shannon left behind a troubled relationship by applying to an exchange program at another school to study geography. To get as far away from the memories of that relationship as possible, she chose a school that was on a different West Coast entirely: the former Gold Coast of Africa. Enrolling at the University of Ghana, Shannon immersed herself in the local culture, spending hours browsing in dressmakers’ stalls at the local bazaar, where you could take bolts of outrageously colorful fabric (batik, Dutch Wax, tie-dye) to a tailor who would design a one-of-a-kind outfit to your specifications in a day or two. She was immediately seduced by the aromatic local cuisine: sticky balls of fufu pounded in a mortar with fiery groundnut stew; fermented kenkey dumplings steamed in banana leaves, like a Ghanaian version of sourdough; and chewy, caramelized kelewele—plantains—fried with spices that don’t even have names in America.
In a society that values good-natured teasing, Shannon discovered the joys of ribbing without malice. She was ridiculed for speaking only English, while her classmates spoke three or more Ghanaian languages. If she aced an exam, her professor would tell her classmates, “Well, the woman has beat you again.” Even a guy on crutches who had survived a polio epidemic wasn’t immune to the abuse: his classmates would say, “Can’t you move along any faster?” (And he would kid them right back.) Shannon was amazed to see disability treated as just a natural part of life, without the usual displays of pity and pompous solemnity. “I loved being in a completely different reality where all my usual touchstones were gone,” she recalls. “Everything was new and different, and different was good.”
Upon returning to Los Angeles, Shannon crossed paths with her future husband again at a Valentine’s Day dinner, but he ended up asking one of her friends out on a date instead. Not to be daunted, she started bombarding Craig with notes and flowers signed by a secret admirer. After weeks of playing cat and mouse, she sealed the deal by sending him an original comic book featuring an imaginary version of herself browsing through personals ads until she found one descibing the perfect man, who bore an uncanny resemblance to Craig. He responded by arriving at the deli unannounced with a bouquet of flowers. They were married in 1995.
—
ZELLY’S BIRTH WAS not easy. After an episode of premature labor, Shannon was confined to her bed for weeks. And the first few months of motherhood were rough going, because Zelly didn’t take naturally to breast-feeding, unlike the infants nursing blissfully in the pages of Mothering magazine. Shannon became a self-milking machine, up every two hours all night long, pumping, bottling, and sterilizing.
But then her daughter got in the groove. Suddenly, being a mom was everything it was advertised to be. Zelly settled into being such a happy, well-behaved infant that she became what Shannon calls a “decoy baby”—the kind that tricks other young couples into thinking that having kids is a cinch.
Shannon’s pregnancy with Leo was uneventful compared with her experience with Zelly. His delivery in the hospital, with help from Craig and a doula, went smoothly. On November 9, 2000, when her son Leonel (named after Craig’s great-uncle, a guitar virtuoso from Portugal) poked his glistening head into the world for the first time, Shannon greeted him by saying, “Hey, Leo, how are you? It’s so great to see you. Welcome!”
Leo got the hang of dining au naturel right away. Shannon started to feel so confident in her mothering abilities that she could even help take care of other people’s babies. But how could any couple deal with having more than two? When did they have time to read fantasy novels or take long showers?
Her son began sitting up on his own at seven months, right on schedule. A month later, he crawled, and he took his first tentative steps four months after that—all within the range of typical development. It wasn’t until Leo’s first birthday that the Rosas noticed anything unusual about him. He started taking his favorite toys and sliding them from one place on the floor to another, over and over again. He didn’t even seem all that interested in playing with them—just in transferring the toys back and forth, like some sort of private ceremony.
As Leo started exploring the house in earnest, he mapped out a preferred route through the living room that he stuck to like a pilgrim following the Stations of the Cross. He touched the same chairs and tables in exactly the same places every time he crossed the room, and he invariably concluded this sequence by hurling himself down on the couch. At first, Craig and Shannon thought his little ritual was cute; they dubbed it Leo’s Circuit. But eventually, “watching him do it so many times in a row got a little uncomfortable,” Craig says.
Midway through his second year, the Rosas took a family vacation in Sonoma with a friend who was also a pediatrician. Leo quickly plotted out a new circuit for himself in the guesthouse. The pediatrician friend observed him making his rounds—touch, run, touch, run, touch, run, flop—and tried calling out his name, but Leo just ignored him and kept on going. “At his age, he should be paying more attention,” Craig’s friend told him privately. “You might want to have that checked out.”
—
THE FIRST THING THAT the Rosas checked was their son’s hearing, because he’d had several ear infections in the previous months. The testing had to be cut short because Leo couldn’t abide anyone poking around in his ears, but his hearing turned out to be fine after all. The doctor prescribed an antibiotic called Augmentin to prevent future infections. But Leo’s overall trajectory was deviating further and further from those of typical children. Shannon’s efforts to potty-train him were unsuccessful, though she kept on trying for years.
Leo had spoken his first words—dada and ball—when he was ten months old. But then he just stopped saying them, as if the first green shoots of his language had withered into silence. One by one, his other milestones started falling by the wayside. The Rosas’ pediatrician assured them that Leo’s tardiness in hitting these marks didn’t mean anything serious. He was a sunny, affectionate little bear who loved to be snuggled and tickled, and kids with autism just aren’t like that, the pediatrician insisted.
“Plus, Leo looks me in the eyes,” the doctor added, intending to settle the matter. Clearly, their son was no Rain Man in the making. Yet there was something unmistakably, undeniably different about Leo, which became more obvious every day. In the months to follow, there would be many more appointments, more tests, more car trips, more interviews, and more evaluations by professionals.
“Using hand pulling, grunting, and jargoning to get needs met,” a clinician noted in Leo’s chart. (Gradually, the Rosas were slipping into the domain of initiated language.) “Therapist called his name throughout the session and Leo rarely gave a response,” wrote another. A third noted that it seemed to take Leo fifteen minutes to even notice that she was sitting there.
The Rosas cast a wide net to figure out what was going on with their little bear. He had always been a picky if enthusiastic eater. His diet consisted almost exclusively of peanut butter and jelly sandwiches, bananas, guacamole, Goldfish crackers, and Veggie Booty popcorn snacks despite Shannon’s attempts to get him to diversify. He began suffering from frequent episodes of diarrhea and vomiting. Shannon took Leo to an allergy specialist, who tested him for sensitivities to soy, corn, egg white, peanuts, milk, mold, cat dander, dog dander, local trees, local bushes, and dust mites. All the tests came back negative.
Meanwhile, his private ceremonies were becoming more elaborate. Rather than fetching a toy himself, he would tap his mother’s elbow to prompt her to get it for him. He was mesmerized by patterns in the sidewalk, but the sound of two people singing together—like his sisters, who love to sing—made him fly into a rage. He would investigate unfamiliar objects by inserting them into his mouth; if Shannon gave him a slice of orange, he would rub it all over his lips and eyelids. He was also developing a curious fascination with straws, which he would press against his upper lip over and over.
By then, the A-word was starting to crop up regularly in his evaluations. The director at a regional center told Craig and Shannon that if their son were older, he would immediately diagnose him as either autistic or “mentally retarded.” There was no longer any room for denial.
Shannon felt devastated, in part because she likes to think of herself as a highly capable person. “Helping, fixing, signing off, pressing Send, checking that box, and moving on to the next task is what keeps me fulfilled and happy,” she says. But Leo’s autism was something that she didn’t know how to fix. After years of being a sound sleeper, she found herself staring at the ceiling at three a.m., night after night. Running errands in her car, she would suddenly have to pull over, because the rules of the road no longer made sense.
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