Rewriting Autism History
Newly discovered documents show how crucial autism research was ignored, perpetuating misinformation about autistic children.
History is dotted with simultaneous independent discoveries. From the Möbius strip to the electric telegraph, great minds sometimes do think alike. And for decades now, the Asperger-Kanner mind meld has been the accepted wisdom of the discovery of autism.
Steve Silberman, a writer for Wired, had worked on a book about autism for about a year. It was a topic with which he was familiar; he’d written a widely read story in 2001 on the prevalence of the disorder, which is estimated to affect one in 68 children. The new project aimed, in part, to document the history of autism research, and Silberman had a hunch that the conventional wisdom surrounding the allegedly serendipitous discovery of autism by two clinicians working independently was, at best, incomplete.
It’s a famous story, frequently told, including in The Atlantic. As Silberman put it, fourteen years ago:
In one of the uncanny synchronicities of science, autism was first recognized on two continents nearly simultaneously. In 1943, a child psychiatrist named Leo Kanner published a monograph outlining a curious set of behaviors he noticed in 11 children at the Johns Hopkins Hospital in Baltimore. A year later, a pediatrician in Vienna named Hans Asperger, who had never seen Kanner's work, published a paper describing four children who shared many of the same traits. Both Kanner and Asperger gave the condition the same name: autism—from the Greek word for self, autòs—because the children in their care seemed to withdraw into iron-walled universes of their own.
Amazing! But not entirely crazy, either.
At first, Silberman didn’t have much to work with. There was a good deal of existing scholarship on the famed Leo Kanner, the psychiatrist who founded the first academic child psychiatry department at Johns Hopkins University Hospital. But there was very little written about Hans Asperger, who practiced at the University Children's Hospital in Vienna. Not much of his writing had been translated and a good deal of his case records perished when, in 1944, Allied bombs destroyed the Children’s Hospital. But Silberman noticed a name in a footnote to a paper, written in German about Erwin Lazar, one of Asperger’s colleagues and founder of the University’s Children’s Clinic, Georg Frankl. Frankl was Asperger’s chief diagnostician.
“I thought, ‘Where do I know that name from?’” Silberman told me recently. He recalled that Kanner name-checked Frankl in his landmark 1943 paper, “Autistic Disturbances of Affective Contact.” There he was, a few pages in, amid a description of a 5-year-old boy named Donald Triplett:
Donald, when examined at the Harriet Lane Home in October, 1938, was found to be in good physical condition. During the initial observation and in a two-week study by Drs. Eugenia S. Cameron and Georg Frankl at the Child Study Home in Maryland, the following picture was obtained...
Kanner’s assistant and Asperger’s diagnostician, though separated by time and continents, were one and the same. “I thought, ‘Oh my god, it can’t possibly be the same guy,’” said Silberman.
Frankl’s journey from Vienna to Baltimore, and from one autism pioneer to another, was if nothing else a testament to Leo Kanner’s heroism. Kanner and his wife, in response to the crisis unfolding in Europe, helped doctors, nurses, and researchers—who would have otherwise perished—find visas and jobs in the United States. They saved upwards of 200 lives—one of which was Frankl’s.
And so it was that by time of Donald’s examination, Frankl had become the psychiatrist-pediatrician at Kanner’s Child Study Home. He was, by all accounts, invaluable. Indeed, Kanner and Frankl ran public clinics together. They toured local schools, giving joint diagnoses. It was, professionally speaking, a close relationship.
Silberman’s discovery, which he writes about in his forthcoming book, NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, is not trifling. Not only does it cast serious doubt on the notion that Kanner’s discovery was completely independent of Asperger. Of perhaps greater importance, it may help resuscitate the reputation of Asperger—a man whose prescient ideas were long ignored.
Kanner and Asperger had divergent views of autism. Asperger’s was expansive. He believed that autism was what Frankl called a “continuum,” or what is now called “the spectrum.” This was the idea that, in the words of the National Institutes of Mental Health, autistic people can be “mildly impaired by their symptoms, while others are severely disabled.” Crucially, Asperger believed that the condition was not rare. Once you knew what to look for, you’d recognize it in many people. Kanner, however, framed autism as a rare form of childhood psychosis and, eventually—under pressure from his Freudian psychoanalytic colleagues—adopted the view that it was caused by bad parenting and “refrigerator mothers.”
Alas, Kanner’s view for many years totally dominated the field, and it made him wildly famous. He was so identified with autism that it was known internationally as Kanner’s syndrome. While Kanner benefited, the field of psychiatry was damaged for a half-century. The acceptance of Kanner’s ideas ensured that autistic children and their families would be stigmatized. More often than not, said Silberman, they were “institutionalized because it was believed that taking them out of the toxic home environment that created the autism would be healthy for them, even though the opposite was true.” (Another possible side effect of Kanner’s beliefs: By undercounting the number of people on the spectrum early-on, modern-day autism figures now seem inflated.)
It would take decades for Kanner to realize he was wrong about autism—that it was not narrow and monolithically defined. What Kanner accepted in the 1970s, Asperger already knew in 1938. (The men filed their landmark papers within months of each other. Kanner’s paper was published in 1943; Asperger’s paper was published a year later, delayed by the war.)
As Silberman found, Kanner and Asperger ought to have been on the same page. Frankl, as well as Anni Weiss—a psychologist also from Asperger’s clinic—worked for Kanner. They had both been members of his “inner circle” since 1938—well in advance of Kanner’s famous paper. (Weiss and Frankl married after they emigrated to the United States.) And Kanner was well-aware of Frankl’s professional bonafides. In a letter from 1939, he mentioned his diagnostician's “good background in pediatrics and close connections for eleven years with the Lazar Clinic in Vienna.” Indeed, it was Asperger’s former clinician who examined Kanner’s first three autistic patients.
So it is a stretch to believe, as Kanner’s colleagues evidently did, that he could be “unfamiliar” with Asperger’s work.
And yet, despite the influence of Frankl, Asperger’s ideas were muffled. To some degree, this is due to the unavailability of his papers, which for decades existed only in German. But the greatest factor in his long obscurity, argues Silberman, was Kanner himself. He acknowledged Asperger directly only once in public, in a dismissive review of a book by another child psychiatrist. As Silberman writes, it was the belief of autism researchers that Kanner didn’t discuss Asperger because they worked with such different types of children; the former’s were “low-functioning” and the latter’s were “high-functioning.” But Asperger was very clear in his paper that he saw more than 200 autistic children at all levels of ability.
Other theories as to why Kanner shunned Asperger’s work are less persuasive. Some historians have believed that Asperger’s work was unknown to Kanner because of the language barrier. But German was Kanner’s native language. Not only that, Kanner was keenly familiar with Archiv für Psychiatrie und Nervenkrankheiten, the neurological journal that published Asperger’s papers, and referenced it many times in his work. As Silberman noted, Kanner obsessively read everything that was written on autism—particularly in the early years, when there wasn’t much scholarship. (To give you an idea how long it took for Asperger’s ideas to be disseminated: It wasn’t until 1991 that Asperger’s paper was finally made widely available to the English-speaking world by cognitive psychologist Uta Frith in her book Autism and Asperger Syndrome.)
It’s possible that Kanner, as a Jew, found it objectionable that Asperger—through no fault of his own—was working for Nazis who had taken over his clinic. It could be that Kanner thought Asperger himself was a Nazi, though Silberman argues persuasively he was not.
In any case, Kanner presented his discovery of autism—“trumpeted it from the rooftops,” as Silberman put it—as his alone. In doing so, said Silberman, Kanner “completely sidelined Asperger. He buried Asperger in history.”
Once Silberman had Frankl’s name, he still needed further corroboration. After all, ‘Georg Frankl’ was not an uncommon name. Luckily, the Jewish Museum of Maryland has an archive dedicated to Kanner’s effort to rescue Jewish clinicians. One of the documents, a handwritten memo on The John Hopkins Hospital letterhead, references Frankl. He’s also mentioned in Kanner’s unpublished autobiography, Freedom From Within. (Silberman worked with a couple of translators, including Eric Jarosinski, who runs the erudite Twitter account @NeinQuarterly.)
Silberman found Frankl’s biographical file in the medical archive at Johns Hopkins. The file, written by Frankl himself, confirmed that he’d worked for 11 years for the Children’s Clinic in Vienna.
“I almost fell out of my chair,” said Silberman. “I couldn’t believe no one noticed this before.”
Once you consider the implications of such buried history, the scope of the tragedy is almost crushing. These were courageous men. While Kanner’s heroics are well-known, we must observe Asperger’s astonishing immunity to peer pressure, and not just from the medical establishment. Twice the Gestapo tried to arrest him, only to be shooed away by his boss, who had taken a liking to him, despite being one of the most prominent Nazis in Vienna.
But the damage done by Kanner, intentionally or otherwise, is inescapable. For far too long he perpetuated ideas about autistic children that were simply not true. And for too long no one was the wiser. “By burying Asperger in history, Kanner obscured the breadth and diversity of the spectrum,” said Silberman. This, in turn, meant “many children who would have been eligible for a diagnosis under Asperger’s more expansive model of autism were left to struggle along on their own in a world not made for them.”
It is clear now that Kanner and Asperger’s discoveries were neither independent nor simultaneous. “Asperger clearly discovered autism first,” continued Silberman. And yet, even as Asperger’s ideas have achieved acceptance, history still endeavors to forget him. In late 2012, the American Psychiatric Association announced that the name Asperger's syndrome would be dropped from subsequent editions of the Diagnostic and Statistical Manual of Mental Disorders. But his legacy—which is, essentially, being right about autism decades before anyone else—remains.