NeuroTribes: The Legacy of Autism and the Future of Neurodiversity

by Steve Silberman

backronyms

Belying

Kanner named their condition autism—from the Greek word for self, autos—because they seemed happiest in isolation.

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?

epigenetics, the science of factors that mediate interactions between genes and the environment.

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.

perorations

anodyne

protean

vagaries

profligacy,

In 1909, a statute had been passed in California granting public-health officials the right to forcibly castrate convicts and the residents of the California Home for the Care and Training of Feebleminded Children, located in Sonoma County. Thirty U.S. states eventually passed similar laws, and a wave of sterilizations swept through asylums and prisons coast to coast. As

ballast”

Ending the lives of these “empty human husks”—who were not even aware of the misery that they inflicted on others—was not only a socially beneficial act, Hoche and Binder claimed, it was the most compassionate thing that could be done under the circumstances. Their life is absolutely pointless, but they do not regard it as being unbearable. They are a terrible, heavy burden upon their relatives and society as a whole. Their death would not create even the smallest gap—except perhaps in the feelings of their mothers or loyal nurses. One of the organizations likely to object was the Catholic Church. But in 1927, the Roman Catholic theologian Josef Mayer provided clerical cover for Hoche and Binding by publishing a book that argued that forced sterilization of “mentally handicapped” people was entirely in accord with Catholic ethics and tradition. Inconveniently, Pope Pius XI issued an encyclical three years later condemning the practice of sterilization for other than “therapeutic uses.” But the concept of “life unworthy of life” left a lasting mark on a culture struggling through a postwar depression, and the encyclical likely played a role in later persecution of Catholic clergy.

Hoche and Binder’s rhetoric resonated deeply with an aspiring politician who had been convicted of high treason for launching an unsuccessful coup against the leaders of the Weimar Republic inspired by Benito Mussolini’s seizure of power in Rome. Stewing in the Landsberg Fortress in Bavaria, this young man—whose name was Adolf Hitler—d...

Hitler referred to Landsberg as the “university” where he gave himself a crash course in eugenics. (Later, he allowed his name to be used in advertisements for Hoche and Binding’s book.) His bible on the subject was The Passing of the Great Race, a hodgepodge of racist pseudoscience, anti-immigration rants, and archaeological poppycock by a dapper, mustachioed Yale graduate named Madison Grant. Throughout the book, Grant refers to the descendants of the Mayflower families as the real “native Americans.” The thrust of his argument was that the Nordic “race” (a fictitious amalgam of Swedes, Danes, and other Northern Europeans) was rapidly becoming an endangered species, elbowed a...

martial music

In Mein Kampf, the manifesto that Hitler dictated to his deputy Rudolf Hess while incarcerated in Landsberg, the future Führer put forced sterilization at the core of his vision of a new society while framing it as a compassionate defense of the lives of children yet unborn. The state, he wrote, “must declare unfit for propagation all who are in any way visibly sick or who have inherited a disease and can therefore pass it on, and put this into actual practice . . . Those who are physically and mentally unhealthy and unworthy must not perpetuate their suffering in the body of their children.” A 1913 textbook by Géza Hoffman called Die Rassenhygiene in den Vereinigten Staaten von Nordamerika (Racial Hygiene in the United States) became the seminal guide to applied eugenics for German biology students. 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.

As unsettled as Asperger was by the rapid militarization of German culture, he was willing to look the other way, dispassionately appraising the clinical work of Heinze and Schröder as he would the efforts of any fellow practitioners in the field. He wrote of his experiences during the practicum, “I find the teaching not too bad. To all appearances, the overall structure fits well with our perspectives, certainly in many details . . . well-grounded structure with clear, diagnostically useful concepts. One can learn a great deal there and work well. But I also think about the efforts that Dr. Frankl puts into his diagnostics for special-needs education.”

He also made an observation that was likely the first lighthearted comment about autism in history. “We have very good concepts for our own work, but we tend to express them in jargon that is understood very differently by outsiders—talk about autistic!—which makes it hard for us to pass them on to others.” Soon, however, Asperger would no longer have the luxury of being able to look the other way.

TWO MONTHS AFTER ASPERGER returned from his practicum, agents of Hitler’s Schutzstaffel burst into the Chancellery building in Vienna disguised as police officers. Panicked members of the cabinet hid themselves behind thin doors that proved no match for the SS men, who smashed through them with rifle butts as they advanced on the apartment where Chancellor Engelbert Dolfuss had taken refuge. Simultaneously, eight Nazis took over the main radio station in the city. They shot the station manager, killed a radio actor with a hand grenade, and forced a newscaster to go on the air and declare that Dolfuss was resigning.

both Asperger’s former mentor, Franz Hamburger, and his trusted colleague at the Heilpädagogik Station, Erwin Jekelius, became fervent party members.

Many Jews took flight to Palestine, where their parents and grandparents had sought refuge from successive waves of pogroms. Others headed to the United States, where the liberal immigration policies that Osborn had condemned at the Second Eugenics Congress offered them a safe harbor, but only if they could provide proof of employment. The same community of pediatricians, surgeons, psychoanalysts, and specialists in other fields that had turned “Red Vienna” into a global beacon of medical expertise was under siege. Of the nearly 5,000 physicians practicing in the city, 3,200 were Jews—a legacy of the Middle Ages, when medicine was one of the few occupations that Jews were allowed to enter, because doctoring in the era of the Great Plagues was an unenviable high-risk profession.

Austria’s loss was the world’s gain. Anni Weiss was the first of Asperger’s team to leave, arriving in America in 1934. The clinic’s gifted diagnostician, Georg Frankl, took flight in 1937, emigrating to Maryland with the aid of a Jewish doctor who had left Austria years earlier. But as the NSDAP’s power and influence grew, the careers of the true believers thrived. Erwin

In 1938, Asperger’s mentor Hamburger gave a lecture to the society titled “National Socialism and Medicine” that left no doubts about his loyalties. It was an odd speech for a physician of his stature, more of a rant on the power of faith healing (which he called “nature healing”) than to the work of “so-called scientists,” as he put it. He began by telling the roomful of eminent physicians that sports and tourism did “more for health than all the doctors put together.” Then he extolled the virtues of the “practical country doctor” (a ruddy Aryan, no doubt) who spread “courage and confidence” among the sick, inspiring blind, unquestioning faith among his patients. “This faith, in all cases,” he said, “leads to the improvement—often even to the elimination—of the symptoms of the disease.” Hitler was playing a similar role for the whole Reich, he explained. “Now we must face the fact that a single man, a non-medical man, through his superior qualities, has opened up new avenues of health for the eighty million folk of Germany.” One of these avenues was the Führer’s refusal to coddle the mentally ill in “luxurious” institutions. Only an “over-intellectualized Jewish patient” would question the wisdom of his doctor’s diagnosis, Hamburger pointedly added—implying that only Jews and other undesirables would challenge Hitler’s diagnosis of society’s ills. It was a vision of the Reichsführer as the Grand Placebo, healing the Volk of all manner of maladies and malaises by overwhelm...

“Horst Wessel Song,” the bombastic Nazi anthem that von Schuschnigg’s government had explicitly banned.

The University of Vienna was transformed into the intellectual center of an academic movement to put Aufartung (racial improvement) and Rassenforschung (racial research) at the top of the medical agenda. When the campus reopened three weeks after the Anschluss, the newly installed dean of medicine, anatomist Eduard Pernkopf, delivered a rousing speech to the faculty before a somber portrait of the Führer, dressed in his storm trooper’s uniform and flanked by a cordon of SS men. He championed Nazism as an all-encompassing worldview that transcended medicine and science, advocated the use of “negative selection” by extinction (Ausmerzung), and praised Hitler as “the greatest son of our home country,” concluding his lecture with a triumphant triple “Sieg Heil!” The new dean wasted no time Aryanizing the most prestigious medical school in Europe. He ordered all faculty members to produce the birth certificates of their parents, grandparents, and spouses to “clarify” that they were of Aryan descent. They were also required to sign loyalty oaths to Hitler, and those who refused were forced to retire immediately. Within weeks, 80 percent of the medical faculty had been dismissed. (Among those fired from other departments were Erwin Schrödinger, who shared the 1933 Nobel Prize in physics with Paul Dirac, and the brilliant mathematician Kurt Gödel.)

The Reich rewarded its loyal servants handsomely. Pernkopf was appointed president (Rektor Magnificus) of the university and given special dispensation to work on his magnum opus, 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.

IN THIS CLIMATE OF rabid fanaticism, on October 3, 1938, Asperger gave the first public talk on autism in history, in a lecture hall at the University Hospital. It’s likely that Hamburger was in attendance, an imposing face in a sea of swastikas, and the children at the Kinderklinik were surely on his radar; a year earlier, the Vienna Psychiatric and Neurological Association issued a decree that “psychopaths” who could not be legally declared insane should be placed under continuous supervision as a permanent menace to society.

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.

Among the notes that Himmler scribbled on a notepad during the call were two words: “Arrest Jekelius.” After a brief stint in jail, Jekelius was drafted into the Wehrmacht and sent to the Russian front, where he was swiftly captured by Red Army soldiers and shipped off to the Lubianka prison camp in Moscow. There, he earned his final footnote in history by befriending a fellow POW who later became a patient of Viktor Frankl, the psychiatrist-author of Man’s Search for Meaning, a memoir of surviving three years in Auschwitz, Theresienstadt, and Dachau. In a section of the book about redemption, Frankl wrote:

Though Maria Asperger-Felder’s claims that her father never joined the Nazi party are credible, owing to his loyalty to the Wandering Scholars, it’s unlikely that he would have been allowed to retain his position at the university without signing a loyalty oath to Hitler, given Pernkopf’s 1938 decree.

Still, Asperger apparently refused to report his young patients to the Reich Committee, which created what he described in a 1974 interview as “a truly dangerous situation” for him. Twice, the Gestapo showed up at his clinic to arrest him. Both times, however, Franz Hamburger used his power as a prominent NSDAP member to intervene in his favor. How can we dare predict the behavior of man? At one point, Asperger suggested to his superiors that his little professors would make superior code breakers for the Reich. By the time he filed his thesis to Hamburger in October 1943, however, he must have known that children like them all over Austria and Germany had already been sent to their deaths. Perhaps his concluding statement about “the duty to speak out for these children with the whole force of our personality” was written for the benefit of future generations. His thesis was published the following June in a journal called Archiv für Psychiatrie und Nervenkrankheiten.

When his unit got lost in the mountains, he employed the orienteering skills he’d learned in the Wandering Scholars to guide them to safety by using his compass and the stars. “The fact that I was never called upon to kill anyone,” he wrote in his diary, “is a great gift of fate.”

Asperger survived the war, but his concept of autism as a broad and inclusive spectrum (a “continuum,” his diagnostician Georg Frankl called it) that was “not at all rare” was buried with the ashes of his clinic and the unspeakable memories of that dark time, along with his case records. A very different conception of autism took its place.

Asperger’s thesis, published in German a year after Kanner’s “Autistic Disturbances of Affective Contact,” became a mere footnote to his landmark accomplishment. All over the world, autism was referred to simply as “Kanner’s syndrome.” The fact that two clinicians, working independently on both sides of the Atlantic, discovered it nearly simultaneously is still considered one of the great coincidences of twentieth-century medicine.

Persian prince Serendip, who “went out for a stroll one day, with no particular quest in mind, and unexpectedly came upon a hoard of treasures,” as he put it.

Kanner’s serene mood was shaken upon arriving in New York City, where a son of a German colleague accompanied him for his first ride on the subway. Seeing the other passengers clenching their teeth and swiveling their jaws in a rotary motion, Kanner ventured that the poor devils had been afflicted by a tic disorder in the wake of the global epidemic of encephalitis lethargica that began in 1918. His young host gently informed him that their fellow straphangers were in the grips of another plague entirely: the craze for chewing Wrigley’s gum, which had not yet caught on in Berlin. Kanner was mortified by his greenhorn error. “For many years to come,” he confessed, “I was embarrassed at the thought of my diagnostic blunder.”

The boy certainly displayed the two essential characteristics (autistic aloneness and elaborate ritualistic behavior) of the syndrome that Kanner introduced

scare quotes)

THOUGH FEW PEOPLE OUTSIDE the APA knew it at the time, the DSM-III had a dark secret. For a document created by DOPs, much of the data behind it was sketchy and provisional. Allen Frances later admitted that “there was very little scientific evidence available to guide” the decision making of Spitzer’s committees. Nowhere was that more evident than in the description of the pervasive developmental disorders, with its weird hodgepodge of vagueness (“music of all kinds may hold a special interest for the child”) and overspecificity (the arbitrary cutoff point between infantile autism and COPDD).

American psychologists, Lynn Waterhouse and Bryna Siegel. A task force was formed to refine their drafts and conduct field tests. The fruits of this labor were published in 1987, in the next major revision of the manual, the DSM-III-R. This edition was even longer and more ambitious than its predecessor, adding twenty-seven new disorders and seventy-three pages of description to its taxonomy of misery. The changes in the criteria for the pervasive developmental disorders were bold and comprehensive, reflecting the depth of cognitive research that had been going on in London while Bettelheim blathered on about Nazi mothers on American talk shows. The word infantile was finally gone for good, and Kanner’s syndrome was rechristened “autistic disorder,” which was understood to persist from the cradle (or shortly thereafter) to the grave. The age-of-onset cutoff was modified to a suggestion that the clinician take note of when the signs first appeared, while the notion of a “residual state” was dispensed with entirely. The COPDD diagnosis was also dropped. Crucially, the nonnegotiable checklist had been replaced by a veritable banquet of options for the diagnostician to pick and choose from: “At least eight of the following sixteen items are present, these to include at least two items from A, one from B, and one from C.” This ensured that fewer children would slip through the diagnostic net because they failed to exhibit one behavior or another on evaluation day. The descripti...

The potential for the DSM-III-R triggering a significant rise in diagnoses was not lost on Wing and her colleagues. Indeed, their field trials had already shown this to be the case. Later studies confirmed that the revised criteria were better at picking up cases of autism at every level of ability, including children who would have been diagnosed only with “mental retardation” in previous generations. Wing and company had done their job well.

But there was a sleeper in the new criteria that refused to behave the way they anticipated: “Pervasive Developmental Disorder—Not Otherwise Specified.” Basically, PDD-NOS was subthreshold autism, but with the rituals, intense focus, and repetitive behavior à la carte. (“Some people with this diagnosis,” the DSM advised, “will exhibit a markedly restricted repertoire of activities and interests, but others will not.”) Based on their field trials and additional research, the task force made the reasonable assumption that PDD-NOS would remain a humble footnote to the primary label. Instead, it turned out to be wildly popular, quickly eclipsing autistic disorder to become the most commonly used PDD diagnosis. Like Asperger’s syndrome, it was an autism diagnosis that didn’t contain the word autism and thus was more readily accepted by parents and health care workers. On the front lines, clinicians played fast and loose with the labels anyway. Judy Rapoport, former chief of child psychiatry at the NIMH, told anthropologist Roy Richard Grinker, “I am incredibly disciplined in the diagnostic classifications in my research, but in my private practice, I’ll call a kid a zebra if it will get him the educational services I think he needs.” The DSM-III-R was an even bigger hit than the previous edition. Over the course of six years and eighteen printings, half a million copies of DSM-III were sold—an unheard-of number by DSM standards—but the DSM-III-R sold 280,000 copies in its first...

On that point, Bax was entirely correct. Between 1990 and 2000, cases of autism in the Family Fund database went up by an astonishing 22 percent on average each year. By the end of the decade, autism-related conditions accounted for a quarter of the disabilities among families of children age sixteen and younger receiving grants—up from a mere 5 percent in 1990. What the devil was going on? Referring to himself as an “outsider” to autism research, Bax didn’t get into subtle issues of nosology and epidemiology in his editorial, turning his attention instead to a colleague’s theory that, in some cases, autism is “wholly or partly the expression of early-life onset” of bipolar disorder, another condition allegedly on the rise. In fact, what was going on was precisely what Wing and Gillberg said was going on, concluded PricewaterhouseCoopers, the auditing giant that undertook a comprehensive analysis of the Family Fund database for the U.K. Department of Education and Skills. The apparent increase in autism and related conditions among U.K. schoolchildren receiving grants was almost certainly the “result of better recognition,” they said, while “improved diagnosis and recognition have resulted in increased numbers of children reporting specific disabilities.” A major change in referral patterns was also under way in England that was guaranteed to produce a spike in autism diagnoses that would never level off again. Before the 1970s, most kids with learning disabilities were ad...

CARS also provided an accurate picture of the child’s strengths, which was crucial for developing an appropriate plan for his or her education. Schopler believed that an approach to autism that took into account strong rote-memory capabilities and enhanced visual-processing skills would result in not only more effective teaching but more accurate neurological research. In 1988, Schopler and his colleagues issued a second edition of CARS that was even easier to use. After reading the manual and watching a thirty-minute video, medical students, speech-language pathologists, and special-education teachers could produce ratings that were nearly as accurate as those of seasoned clinical observers. Additionally, the new version of CARS could be employed to diagnose teenagers and adults. As a result, it became wildly popular, far beyond what Schopler and his colleagues expected.

The fact that the syndrome shaded into subclinical eccentricity raised a question that cut to the core of the entire psychiatric enterprise: Was Asperger’s syndrome truly a mental disorder or a common personality type in its most extreme form? Asperger’s 1944 description suggested a more holistic view: it was a personality type that could become profoundly disabling in the absence of adequate adaptation by the patient and the people in his or her environment. Volkmar cautioned his colleagues, “Odd and unusual behaviors do not, in and of themselves, constitute a ‘disorder’ unless they are related to a manifestation of serious dysfunction within the individual.” Yet, even in Volkmar’s clinic at Yale, the nature of what constituted “serious dysfunction” was much more open to interpretation than an elevated level on a blood test or an anomalous waveform on an EEG.

“As I explain to parents, the cure for Asperger’s syndrome is very simple—it is not surgery, medication or intensive therapy,” says Tony Attwood, one of the world’s leading authorities on the subject. “It is taking your son or daughter to their bedroom, leaving the bedroom, and closing the door. You cannot have a social deficit when you are alone. You cannot have a communication problem when you are alone. Your repetitive behavior does not annoy anyone when you are alone. All the diagnostic criteria dissolve in solitude. That’s why teenagers with Asperger’s are reluctant to leave their bedroom for school: the signs of autism, and the degrees of stress and withdrawal, are proportional to the number of people present.”

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.” — IF THE DSM-III TURNED Spitzer and his data geeks into “rock stars” (as his wife, Janet Williams, put it), the fourth edition was Michael Jackson’s Thriller. DSM-IV was an international smash that earned $18 million in its first ten months in print alone and $100 million altogether while launching a thriving industry of branded tie-ins and lucrative subsidiaries. DSM-IV casebooks, study guides, videotapes, and software poured onto the market, and readers interested in the making-of backstory could browse through a four-volume DSM-IV Sourcebook. Spotting the signs of autism—once the arcane skill of the initiated few—became the job of nearly everyone involved in pediatric medicine, psychology, and education.

Inevitably, the more that clinicians and educators looked for a condition, the more they found it. The upward trend that began in the wake of the DSM-III-R began to snowball after the publication of the DSM-IV. 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.