NeuroTribes: The Legacy of Autism and the Future of Neurodiversity

by Steve Silberman

Once one has learnt to pay attention to the characteristic manifestations of autism, one realizes that they are not at all rare. —HANS ASPERGER

She felt warmly toward the boy too, though she could see why his grandmother was baffled by his behavior. Weiss believed her when she insisted that her grandson was not willfully mischievous or disobedient. On the contrary, he was softhearted and naïve, and felt terribly embarrassed when his failings were pointed out to him. He just seemed constitutionally incapable of behaving appropriately in public.

Much of this cultural ferment originated in Vienna’s lively Jewish community, which dated all the way back to the twelfth century. Gustav Mahler’s music echoed from radios and concert halls, while Jewish patrons commissioned the exquisite paintings by Gustav Klimt and Egon Schiele displayed in local galleries. In the years after the First World War, one in five inhabitants of the city were Jews, as were many of the faculty members who taught at the university.

In an era when psychology was striving to prove its empirical validity by embracing standardized tests like the Stanford-Binet intelligence scale (commonly known as the IQ test), the ward’s emphasis on “looking with open eyes,” as Asperger put it, seemed like a throwback to the nineteenth century, when clinicians like Jean-Martin Charcot encouraged his patients to make art. Michaels was shocked to see happy children at play, throwing a ball around, instead of sitting “fixed in numbered seats to await their turn, as we in America are accustomed to see them.”

“Fundamentally there appears to be no special interest in the differences between normal and abnormal,” Michaels wrote, “as it is felt that theoretically this is unclear, and practically it is of no great importance.”

Michaels admitted that the clinic’s approach seemed like “more of an art than a science.” But he recognized that the ambitions of this art went beyond the mere formulation of a diagnosis. Instead, he wrote, Asperger and his colleagues aimed at nothing less than “to determine the innate capacities of the child, the alterable components of his personality, the causes of his pathological behavior, what will best assure his personal happiness, security and social welfare, what his right place is in the family, society, what are his personal goals and ambitions, and how these can all be realized.”

These children were bundles of paradoxes: precocious and childish, sophisticated and naïve, clumsy but formal, standoffish but lonely, attuned to the music of language but insensitive to the rhythm of reciprocal interaction.

These views of race and disability were not fringe science—the ranting of a deranged extremist at the academic equivalent of a Ku Klux Klan rally. They were the perspective of a broad swath of the scientific mainstream in America after World War I, backed by ongoing research in the United States and Europe funded by major foundations like the Carnegie Institution and the Rockefeller Foundation. Of the fifty-three papers presented at the conference, forty-one were the work of American scientists. The

As influential as they were at home, American eugenicists received an even warmer welcome in Germany, where they found enthusiastic support for their ideas in another country that had recently suffered the loss of a generation of bright, physically fit young men in war. Fearing that this decimation would act like natural selection in reverse, the ambitious leaders of this proud and wounded nation undertook a plan to secure the future of their race by wiping “mental defectives” off the face of the earth forever.

As the National Socialist party rose to power in the 1930s, the body of American eugenic law became the blueprint for Nazi policies to defend Nordic—rechristened “Aryan”—Blut und Rasse (“blood and race”) from dysgenic influences.

an anatomical atlas called Topographische Anatomie des Menschen. This epic multivolume work featured lavish watercolor plates of each organ, bone, and blood vessel in the human body, accurate in every hue and detail. Praised by the Journal of the American Medical Association as “a work of art,” Pernkopf’s Anatomy became the go-to guide for surgeons all over the world who needed to brush up on their knowledge of internal organs before attempting a tricky procedure. Only in 1996, when a Jewish surgeon working with a Holocaust scholar demanded an investigation in the letters column of JAMA, did the medical profession admit that it had been teaching students how to become surgeons for nearly sixty years with paintings of the flayed bodies of disabled children and political prisoners.

“The good and bad in a person, their potential for success or failure, their aptitudes and deficits—they are mutually conditional, arising from the same source,” he said. “Our therapeutic goal must be to teach the person how to bear their difficulties. Not to eliminate them for him, but to train the person to cope with special challenges with special strategies; to make the person aware not that they are ill, but that they are responsible for their lives.”

Unfortunately, his strategy of accentuating the positive to his Nazi superiors—shaped by the knowledge that the lives of his young patients were at stake—would contribute to widespread confusion in the coming decades. On the basis of the four prototypical boys in Asperger’s thesis, many clinicians and historians have assumed that he saw only “high-functioning” children in his practice, which ended up obscuring his most important discovery. The autism that he and his colleagues learned to recognize in prewar Vienna was “not at all rare,” was found in all age groups, and had a broad range of manifestations, from the inability to speak to an enhanced capacity for focusing on a single subject of interest for an extended period of time without distractions. In other words, it was a spectrum. Once you knew what to look for, you saw it everywhere.

The problem with labels, he said, is that they seem to correspond to disease entities that live independently of the patient, like types of viruses or bacteria.

Epilepsy is now considered one of the most common comorbidities in autism, affecting nearly a third of the diagnosed population.

But his insistence that his syndrome was rare was decidedly premature. Kanner was one of very few child psychiatrists in the country at that point, and he had already seen thirteen cases that fit the pattern (the original eleven, plus two more mentioned in a footnote), and he would soon see seven more. Plus, families of limited means—who couldn’t afford to make the rounds of pediatricians, psychologists, and neurologists until they were referred to a specialist like him—weren’t even on his radar. Furthermore, if his syndrome had less blatantly disabling forms—as most developmental disabilities do—Kanner would likely have missed them altogether, because he had set up his referral network at the Harriet Lane in such a way that he was guaranteed to see only the most perplexing, unmanageable, and difficult cases.

In essence, he was sitting at the apex of a pyramid designed to filter all but the most profoundly disabled children of the most well-connected families in America out of his caseload.

In an eerie preview of the autism “epidemic” to come four decades later, the prevalence of childhood schizophrenia started spiking in the midtwentieth century. By 1954, Bender saw 850 young patients with that diagnosis at Bellevue alone, including 250 cases added to her files in the previous three years. Bellevue was not unique in this respect: from 1946 to 1961, one in seven children admitted to the Langley Porter Neuropsychiatric Institute in San Francisco were diagnosed as “psychotic,” with most having a reported onset before three years of age.

the predictable outcome of his statements was the widespread adoption of an approach to therapeutic intervention for autism that included years of psychoanalysis for the parents and removal of the children to an institution like Bellevue or Langley Porter “for their own good.” The most prominent advocate of this approach—which was archly christened parentectomy in the press—was

During that time, a consensus developed among autism researchers that the reason Kanner never discussed Asperger’s work was that the two men had described two very different groups of children—one “high-functioning” (Asperger) and the other “low-functioning” (Kanner). Though Asperger had made clear that he had seen children (as well as adults) at all levels of ability his paper had not yet been translated into English, and the fact that he had intentionally highlighted his “most promising” cases to deflect the wrath of the Nazis was still unknown.

Asperger’s prediction that the little professors in his clinic could one day aid in the war effort had been prescient, but it was the Allies who reaped the benefits.

But Rimland also presciently suggested that in some cases the syndrome was caused by unknown environmental factors acting upon a genetic predisposition. He speculated that parents who tend to be gifted in certain fields pass this vulnerability down to their children along with the genetic factors for high intelligence. Thus, autism represented a potential for genius that had been derailed somewhere along the line—“brightness gone awry,” as Rimland put it. “We must give serious consideration to the hypothesis that an infant’s road to high intelligence lies along a knife-edged path,” he wrote, “and the higher the potential intelligence, the steeper and more precarious the slope.”

The flaw in Rimland’s idea may have been his attempt to link autism to general intelligence—which is notoriously difficult to measure in autistic people anyway—rather than to a specific set of aptitudes.

A mother from Canada told him that her son’s autism had vastly improved after she gave him megadoses of B vitamins inspired by the schizophrenia research of Abram Hoffer and Humphry Osmond at a mental hospital in Saskatchewan. Osmond was no stranger to controversial research: he coined the word psychedelic in 1957 after giving Aldous Huxley the dose of mescaline that inspired him to write The Doors of Perception.

In 1983, he co-founded the Family Research Council, an influential Christian lobbying group that helped craft the plank in the 2012 Republican national platform calling for an amendment to the Constitution defining marriage as the union of one man and one woman. Rekers’s ubiquity in courtrooms coast to coast, furnishing expert testimony against gay marriage and gay adoption in pivotal cases, inspired the New York Times’ Frank Rich to call him “the Zelig of homophobia.” In the meantime, his star patient wasn’t faring nearly as well. Kirk hanged himself in 2003 at age thirty-eight, following decades of depression.

Rekers’s lucrative career as an expert witness came to an abrupt end in 2010 when two photojournalists ambushed him at the Miami International Airport returning from a holiday in Madrid with a young male companion who turned out to be a paid escort from Rentboy.com. In the scandal that followed, he told the press that his handsome “travel assistant” had been hired to lift his luggage as he recuperated from hernia surgery, claiming that they had spent their time together in Spain “sharing scientific information on the desirability of abandoning homosexual intercourse.” Informed of Kirk’s suicide by CNN’s Anderson Cooper, he dismissed the Murphys’ assertion that their son’s experiences at UCLA contributed to his despair as “a hypothesis” that would require empirical proof.

some ABA practitioners rely on techniques like withholding food and administering physical punishment to modify behavior to the present day. Painful electric shocks are still employed to punish autistic children at an institution called the Judge Rotenberg Educational Center in Massachusetts, even in the face of a public outcry against their use.

BUT ONE THING THAT LOVAAS never changed his mind about was that the best hope for such children was for them to aspire to become “normal”—purged of all visible traces of autistic behavior.

Hoffman read Temple Grandin’s Emergence and sought out the author, who told him that the one thing she wanted more than anything else in life was for someone to hug her—but the moment that anyone did, she couldn’t bear it. “That sentence just destroyed me,” Hoffman said.

Ironically, while Raymond was widely referred to in the press as “high-functioning” and “one of the lucky ones” when the film came out, he was portrayed as less capable of living independently than any of the real-life models on which his character was based.

The pressures exerted by these groups—and the idiosyncratic mind of Spitzer himself—reframed the DSM in a way that reinvented psychiatry as the front end of the pharmaceutical industry rather than the arcane art of soul healing, akin to shamanism, that it had been.

There was just one bit of unfinished business to attend to: those rumors that Asperger, who had died in 1980, was a Nazi. “It was a crazy problem. It took me weeks to figure it out,” Volkmar confessed. Finally, he decided to phone up Wing and bluntly ask her if there was any truth to the rumors. She came up with the perfect answer—one that was utterly irrelevant but virtually guaranteed to persuade Volkmar to sign off on the new diagnosis. “Oh, dear no,” she reassured him from London. “Asperger was a deeply religious man.”

In fact, the numbers were rising a little too steeply, because the DSM-IV editors had made a small but crucial error in the final run-up to publication. Instead of requiring that a child display impairments in social interaction, communication, and behavior before getting a diagnosis of PDD-NOS, the criteria substituted the word or for and. (In other words, a clinician could deliver the whole banquet by choosing one from column A.) This fateful typo went uncorrected for six years and was unacknowledged in the literature until the editor of the DSM-IV Text Revision, Michael First, finally copped to it in a notably understated article in an obscure journal in 2002. This certainly didn’t mean that every child diagnosed with PDD-NOS in the years between 1994 and 2000 was misdiagnosed, but the impact of the botched language was potentially significant. By reanalyzing the field-test data using the erroneous wording, Volkmar found that “about 75 percent of children identified by clinicians as not having the disorder (true negatives) were incorrectly identified as having it according to DSM-IV.” For epidemiologists gauging the DSM-IV’s impact in the crucial period that would go down in history as the years a mysterious “autism epidemic” took hold, it was a statistical nightmare. Yet, until author Roy Richard Grinker called attention to the typo in his 2008 book Unstrange Minds, hardly anyone outside the usual tiny circle of experts was aware of it.

WAKEFIELD’S CASE SERIES BECAME one of the most influential journal articles in the history of public health—a considerable accomplishment for someone who admits that he knew nothing about autism before he undertook the study. But it would also become one of the most widely and thoroughly refuted. Investigations and inquiries launched in the years following its publication by journalist Brian Deer, the General Medical Council, the British Medical Journal, and other watchdogs uncovered numerous problems with its methodology, ethics, and reporting.

Lorna added that if a “dash of autism” is essential for success in science and art, as Asperger suggested, perhaps the advent of the Internet has accelerated “an evolutionary tendency in that direction.”

By then, public awareness of autism was increasing rapidly, as were the number of diagnoses. That spring, Lorna Wing published an article on the potential impact of the spectrum on research, concluding that traditional prevalence estimates based on variations of Kanner’s criteria—five children in ten thousand—would have to be revised upward to nearly ten times that.

By reading Williams’s Nobody Nowhere and Sacks’s profile of Grandin, she understood that being autistic does not mean being devoid of empathy, and that the spectrum spans a broad range of intellectual ability. She felt like she had finally found “her people.”

Blume was the first person to use the term in the press, writing in the Atlantic in 1998, “NT is only one kind of brain wiring, and, when it comes to working with hi-tech, quite possibly an inferior one . . . Neurodiversity may be every bit as crucial for the human race as biodiversity is for life in general. Who can say what form of wiring will prove best at any given moment?”

In his view, it wasn’t just that more autistics were becoming visible in the world, but the world itself was becoming more autistic—and this was a good thing. The revenge of the nerds was taking shape as a society in which anyone who had access to a computer and a modem could feel less disabled by the limitations of space and time.

Just because a computer is not running Windows doesn’t mean that it’s broken. Not all the features of atypical human operating systems are bugs. By autistic standards, the “normal” brain is easily distractible, is obsessively social, and suffers from a deficit of attention to detail and routine. Thus people on the spectrum experience the neurotypical world as relentlessly unpredictable and chaotic, perpetually turned up too loud, and full of people who have little respect for personal space.

The main reason why the Internet was able to transform the world in a single generation is that it was specifically built to be “platform agnostic.” The Internet doesn’t care if your home computer or mobile device is running Windows, Linux, or the latest version of Apple’s iOS. Its protocols and standards were designed to work with them all to maximize the potential for innovation at the edges.