Read In a Different Key: The Story of Autism Online

Authors: John Donvan,Caren Zucker

Tags: #History, #Psychology, #Autism Spectrum Disorders, #Psychopathology

In a Different Key: The Story of Autism (48 page)

Notably, the diagnosis became widespread even though, as of 1991, Asperger’s syndrome was not recognized in the American Psychiatric Association’s
DSM
. In 1992, the World Health Organization (WHO) got out in front of the APA by including Asperger’s in a massive compendium called the
International Classification of Diseases
.

With the diagnosis continuing to climb in popularity, and with the WHO having officially recognized it, the editors of the
DSM
felt pressure to follow suit. As it happened, the APA planned to publish an updated edition of the
DSM
in 1994, which made it imperative that they decide whether to include Asperger’s syndrome.

But first there was an awkward question to be answered about the man the syndrome was named after.

32

THE SIGNATURE

W
hen the question was put to Lorna Wing in 1993, in a transatlantic phone call, she was shocked by it.

Was Hans Asperger, as a young man, a Nazi?

Fred Volkmar of the Yale Study Center felt uncomfortable even asking the question. But he believed he should, because doubts about Asperger’s character had been raised. And a decision had to be made quickly about whether to posthumously honor Asperger by naming a condition after him in the
DSM
, the “bible” of psychiatry.

For months, experts led by Volkmar had been looking at studies, running field trials, and debating with one another, in conference rooms, by phone, and by fax, whether Asperger’s syndrome deserved that formal recognition. As part of the working group assigned to “pervasive developmental disorders” for the 1994 update of the
DSM
, their conclusions would be decisive.

Volkmar’s Yale Study Center was the leader in Asperger’s research in the United States. At one point,
a research request for volunteers with the condition had given Yale a roster of more than eight hundred families and individuals across the country. At Yale and elsewhere, clinicians who found the concept useful and relevant had been diagnosing patients with Asperger’s without waiting for the
DSM
to sanction its usage.

Yet there was still vigorous disagreement over the validity of the concept. It was unclear whether individuals with the diagnosis were truly different in presentation from those described as “high functioning autistic,” an already familiar and much-used concept. Beyond that, it was evident that clinics were independently tweaking the criteria,
leading to widespread inconsistency in how the Asperger’s label was applied. Given this, many argued that Asperger’s was not a necessary or useful addition to the diagnostic lexicon.

On the other hand, the World Health Organization had just endorsed Asperger’s as a stand-alone condition. Of greater relevance, Volkmar himself was among those convinced of its validity, having seen plenty of people at the Yale Child Study Center whose symptoms appeared to justify a diagnosis of Asperger’s. Volkmar, charismatic, persuasive, and thorough, would be one of the final arbiters of whether the condition would be enshrined in the
DSM
. So it mattered when, with only months left till the new manual was due, he decided to investigate the question of whether Hans Asperger had been a Nazi.


E
RIC
S
CHOPLER, FOR ONE
, was convinced of it. He was also among those who considered Asperger’s ideas superfluous to the understanding of autism, not to mention sloppily conceived. His attacks on Asperger’s work in the 1990s were noticeably personal, reflecting an antipathy not justified by mere professional disagreement.
“The seeds for our current syndrome confusion were sown in the rich soil of his few publications,” he once wrote. In Schopler’s view, Asperger had never “succeeded in identifying a replicable psychiatric syndrome.”

Schopler’s antipathy can be understood as the bitterness of a man who, as a child, had to flee Germany with the rest of his Jewish family, and who remained suspicious of any adult—German or Austrian—whose career as a medical professional had thrived during the Nazi era. He had no more to go on than that; it was
guilt by association. But this did not prevent him from launching a one-man whisper campaign to the effect that Asperger had probably been a Nazi sympathizer, if not a collaborator or actual party member. More than once, Schopler dropped such innuendoes in print, in publications he oversaw, such as the
Journal of Autism and Developmental Disorders
. There and elsewhere, he pointedly made reference to Asperger’s
“longstanding interest in the German Youth Movement,” hinting at a connection between Asperger and the Hitler Youth. Still, perhaps because Schopler kept his
allusions subtle, most people who knew of Asperger’s syndrome in the 1990s were unaware of any controversy concerning Asperger’s past.

Volkmar, for example, did not hear about it until late in the
DSM
review process. But it was not Schopler who brought it to his attention. During the field trials Volkmar was running in order to test the proposed criteria for Asperger’s, two Yale colleagues he held in high esteem raised the subject. One, Donald Cohen, the longtime director of the Yale Child Study Center, had published widely on autism. The other was a young star in the field, a clinician and investigator named Ami Klin.
As a psychology PhD candidate in London, Klin had caused a stir with a brilliantly designed study showing that autism affected children’s responses to the sounds of their mothers’ voices. It had been Cohen who personally recruited Klin to Yale in 1989. The two men formed a close mentor-protégé relationship based on both a fascination with autism and a powerful sense of Jewish identity. Cohen was an observant Jew and a dedicated student of the Holocaust. Klin had been born in Brazil, the son of Holocaust survivors, and had earned his undergraduate degree in history and political science at Hebrew University in Jerusalem.

The question the two men kept turning over was whether Asperger might be implicated, in any way, in the medical atrocities ascribed to the Nazis who ruled Vienna. Both knew that the medical profession had already embarrassed itself by its failure to ask this question about several doctors and researchers who had practiced under the Third Reich. Modern textbooks still carried references to diseases named for Nazi-era scientists whose ethics were repellent, if not criminal, such as neurologists whose significant discoveries were made by dissecting the brains of children and adults murdered by the Nazis. A Dr. Franz Seitelberger of Vienna had been a member of the SS, while Professor Julius Hallervorden of Berlin was known to select live patients whose brains he planned to study after their deaths by “euthanasia.” Hallervorden infamously said,
“If you are going to kill all these people, at least take the brains out so that the material gets some use.” Yet the terms “Seitelberger disease” and “Hallervorden-Spatz disease” still appeared in academic publications.

In 1993, Asperger, dead thirteen years, never a great presence on the world stage, remained a little-known figure. Uta Frith had published a cursory review of his life and work in 1991, to accompany her translation of his big 1944 paper. In addition, a talk Asperger gave in Switzerland in 1977 had appeared in translation in the magazine of a British autism organization in 1979, but it was not widely distributed. In short, Volkmar could get little information about Asperger on his own, and had no true “Asperger expert” to turn to. It was in that context that he called Lorna Wing, the one person he knew who had met Hans Asperger, and posed the question to her:
Was Hans Asperger, as a young man, a Nazi?

Lorna Wing gasped.
“Hans Asperger, a Nazi?” He could hear her indignation. She spoke of his deep Catholic faith and lifelong devotion to young people.

“A Nazi? No,” Wing said. “No, no, no! He was a very religious man.”

It was a short conversation, but it settled the issue.

A few months later, the
DSM-IV
appeared. Ninety-four new mental disorders had been proposed for inclusion, but only two made it. One was Bipolar II Disorder. The other was Asperger’s Disorder.


I
N
1993, W
ING
and Volkmar knew nothing, of course, of the information about Asperger that would be unearthed in the years ahead.

The first warning sign came in 1996. That year, Ami Klin, along with Volkmar and psychologist Sarah Sparrow, began putting together a book they planned to title
Asperger Syndrome
. Yet Klin still could not shake his misgivings. And, because his name would be on the cover of the book, he decided that something more than a phone call to Lorna Wing was necessary in order to establish that Asperger’s hands were clean.

In late 1996, Klin began writing to archives and institutes in Germany and Austria, seeking any documentary or other information on the Austrian doctor. This yielded little. But then a professor in Cologne, Germany, referred him to Austrian historian Michael Hubenstorf, who taught at the Institute of the History of Medicine at Berlin’s Free University.
“We would like to be able to write that he was
a benevolent doctor whose primary concern was his patient’s [sic] well being,” Klin wrote Hubenstorf. “But we are not sure of that.”

Hubenstorf responded a few weeks later with a four-page letter and a five-page catalog of Asperger’s career postings, promotions, and publications he had assembled. Klin’s concerns, he wrote, were justified. While he had found no record of formal membership in the Nazi Party, Hubenstorf informed Klin that Asperger’s “medical career was clearly set in a surrounding of German Nationalists and Nazis,” and that he was regularly promoted within that setting. He believed the doctor might have downplayed his previous connections to known Nazis such as Professor Hamburger, his onetime mentor, whom Hubenstorf described as “the most outspoken Nazi pediatrician of them all.”

“It remains unclear how much of a fellow traveler he was,” Hubenstorf concluded. But his advice to Klin was to err on the side of caution. He recommended against publishing “anything before the utmost effort has been made to clear Prof. Asperger’s past.”

In the end, Klin chose not to take Hubenstorf’s advice. Weighing everything, he recognized that no “smoking gun” had been found—no evidence that Asperger had directly participated in any Nazi medical crimes. In the meantime, Klin had received a copy of an obituary of Asperger that portrayed him as a warm, gentle doctor devoted to the care of children. Asperger’s daughter, Maria Asperger Felder, also vouched for her father’s reputation when Klin reached out to her. Herself a psychiatrist,
she wrote that her father had been at odds with the Nazis’ racial determinism, that he had been an enemy of children’s suffering, and that he had never lost “his lifelong interest in and his curiosity about all living creatures.”

This was the story of the benevolent doctor that Klin had hoped would turn out to be the truth. In 2000, Klin, Volkmar, and Sparrow published
Asperger Syndrome
, with a foreword by Asperger’s daughter.


T
HE

BENEVOLENT DOCTOR
” version of Asperger had strong appeal, and would inform many assessments of his work. Indeed, an overwhelmingly positive narrative of Asperger as a man of moral rectitude came into focus in the new millennium, elevating him almost
to the status of hero. Increasingly, he was seen as a cautious yet brave and canny saboteur of the Nazi project to exterminate intellectually disabled children. This image of him echoed Uta Frith’s assertion, in 1991, that Asperger had been an ardent defender of the “misfits” the Nazi eugenics program was designed to destroy.
“Far from despising the misfits,” Frith wrote in the introduction to her translation of his 1944 paper, “he devoted himself to their cause—and this at a time when allegiance to misfits was nothing less than dangerous.”

The hero image was amplified by Berlin psychiatrist Brita Schirmer, who in 2002 called attention to Asperger’s
“humanity and his courageous commitment to the children entrusted to him in times when this was by no means obvious, or without danger.”

In 2007, the Dublin-based psychologists Viktoria Lyons and Michael Fitzgerald wrote a letter to the
Journal of Autism and Developmental Disorders
that celebrated Asperger as a man who
“tried to protect these children from being sent to concentration camps in World War II.”

And in 2010, the British autism historian Adam Feinstein published the results of his own reporting trip to Vienna to investigate the rumors that Asperger was sympathetic to Hitler.
“The very opposite is more likely to be the case,” he concluded.

This view of Asperger rested on a number of compelling stories. It was said that he had twice narrowly escaped arrest by the Gestapo while working at the Vienna Hospital, and that he had risked his own safety by failing to report the names of disabled children to the authorities. An entry in his diary, written during a 1934 visit to Germany, seems to shudder at the gathering Nazi storm:
“An entire nation goes in a single direction, fanatically, with constricted vision.”
His Catholic faith, and his membership in the Catholic youth organization known as Bund Neuland, have also been cited as evidence of his association with a progressive morality that was at odds with the Nazi agenda.

Above all, this view rested upon Asperger’s clear statements, from early in the Nazi era, defending the right of mentally challenged children to society’s support. During the 1938 talk in which he described his autistic cases for the first time, he declared, “Not everything that
falls out of line, and thus is ‘abnormal,’ has to be deemed ‘inferior.’ ” Likewise, at the conclusion of his better-known 1944 thesis, “Autistic Psychopaths,” he saluted the medical profession’s “duty to stand up for these children with the whole force of our personality.”

Thus, the case seemed strong for Asperger as a humanitarian and liberal thinker. It was an optimistic and inspiring portrait that spoke to modern sensibilities. And it would prove to be seriously flawed.

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