In a Different Key: The Story of Autism (47 page)

Each Austrian in this situation had to figure out his or her own way
to navigate and survive. In the case of the pediatrician Hans Asperger, it is clear that his response was to pour most of his energy into his work with children.

—

O
N
O
CTOBER
3, 1938—
FOUR
days before Leo Kanner met Donald Triplett in Baltimore for the first time—Hans Asperger stepped before a roomful of colleagues in Vienna and began talking about a group of boys he had been studying for some time, whose personalities he described as “autistic.” He used the word in a novel way, making clear that it was not meant to suggest that the boys were suffering from schizophrenia.

This was an important distinction. Until then,
autistic
had been reserved exclusively to describe one of the behaviors commonly seen in people with schizophrenia. It was a telltale social withdrawal, evidenced by a flattening of personality, a cutoff of communication, and a preference for isolation. It was a symptom of schizophrenia that appeared to come and go, in a condition that generally had its onset in young adulthood.

Just as Leo Kanner would do five years later in 1943, Asperger in 1938 consciously appropriated the word “autistic” to describe behavior that was reminiscent of schizophrenic withdrawal, but also unlike it. For one thing, it affected young children, sometimes manifesting itself as early as the age of two. The children in question did not experience hallucinations or hear voices, as was typical of schizophrenia. Further, the social deficit was more or less permanent in nature rather than fluctuating by the day.

Asperger called his boys “Autistischen Psychopathen”—autistic psychopaths. In German, the word “psychopathy” was akin to the term
personality disorder
, with none of the connotations of the deranged or criminal mind that it bore in English.

The full text of Asperger’s talk was printed in
a medical weekly shortly after he gave it. Six years, and most of World War II, would intervene, before he produced a second publication-worthy discourse on the boys and their behaviors. The sixty-one-page paper he published in 1944, which was actually his
postgraduate thesis, told the
stories of Fritz, Harro, Ernst, and Hellmuth, four Austrian boys between the ages of seven and seventeen whose behaviors captured the essence of the condition. As of 1944, Asperger had seen two hundred boys with these types of traits, but no girls.

The children Asperger described were different in important respects from Donald and the other American children Kanner had written about the year before, whose hallmark trait, in Kanner’s view, was a seeming indifference to humans and a nearly full-blown disengagement from them. Most of Asperger’s boys, by contrast, seemed to strive for connection with others, usually adults, but those relationships were filled with anxiety and were undermined by the boys’ difficult personalities, which did not invite warmth and understanding. They failed to form friendships with other children, who teased them mercilessly. On the playground or on the way to school, Asperger reported, he had often seen such kids fighting off groups of bullies.

Sometimes the tormented children lashed back. Fritz, for example, once went after a classmate with a hammer, and several of the boys were expelled from school in the first or second year for unruly behavior. Asperger saw their alienation in their facial expressions, noting an occasional
“malevolent light” in their eyes. Ernst was combative not just with other children, but also with his teachers. As for Harro, Asperger described him as an inveterate liar.

This sorry cycle of antisocial tendencies, exacerbated by other people’s cruelty, grew out of specific traits Asperger ascribed to the boys. They made little eye contact, their gazes directed “into the void.” Extremely literal-minded, they missed other people’s nonverbal signals—the raised eyebrows, the shrugs and sighs, the half-finished sentences. They also tended to be physically clumsy, a major liability when it came to sports, thus exposing themselves to more teasing and ostracizing.

Another major difference from Kanner’s cases was that most of Asperger’s children were extremely verbose. But it was not simply that they were talkative; it was that they spoke more like grown-ups than like their peers, with precise grammar and large vocabularies others sometimes found strange or irritating. The boys also tended to lock
on to just one or two narrow subjects that fascinated them and no one else—such as heraldry, or the layout of the railroads. They would hold forth on these topics incessantly, in a singsong, automatic way, unaware of when they were boring or exasperating others. Their very facility with words undermined their social relations.

As Asperger pointed out, their well-developed language skills were consistent with another characteristic common to all the boys: they were intellectually whole. Better than whole, in many cases. Fritz, even at the age of eight, could solve problems, analyze data, and grasp the nuances of complex systems with facility. Perhaps, Asperger posited, these intellectual gifts were not a fluke but a positive side effect of their unconventional personalities. Perhaps their ability to take a deep dive into a narrow subject went hand in hand with their ability to lock out distractions. He offered the example of a young boy obsessed with drawing geometric shapes in the sand, who went on to acquire a PhD in astronomy and to prove a mathematical error in Newton’s work.

This explained why, despite their difficult experiences with people, most of the boys were more than capable of learning. Asperger cited the children he had treated who grew up to have successful careers—among them academics, musicians, and an expert on heraldry. Even though their eccentricities persisted into adulthood, he said, “they fulfill their role well, perhaps better than anyone else could.”

The journal that carried Asperger’s paper was dated June 3, 1944. On June 6, the Allies launched the D-Day invasion of Normandy.

Through the end of the war, and after it, Asperger’s career continued to flourish. In 1944,
he was named a lecturer at the University of Vienna; in 1957, a professor at the University of Innsbruck; and in 1963, the director of the children’s hospital at the University of Vienna. He spent his entire career working with children, and he
published more than three hundred times, often on his autistic psychopaths but also, frequently, on the subject of death. At Vienna, his classes were always a big draw for students. He
continued lecturing past his official retirement, though he cut back to one lecture a week, always delivered on Wednesdays. Around 1977, he sat down for a lengthy
interview with Austrian radio. In 1980, when he was seventy-four, he fell ill shortly after delivering one of his lectures. He was dead before the following Wednesday.

As established as Asperger was in his homeland, however, his name never traveled far beyond the borders of Austria and Germany during his lifetime. At the time of his death, his then thirty-six-year-old paper describing those four boys whose behaviors he saw as “autistic” had still found almost no readership in the English-speaking world. Even to those who, like Bernie Rimland, paid obsessive attention to news about autism, he was a relative nonentity. In his comprehensive 1964 book on autism, Rimland mentioned
Asperger’s name once, but only between parentheses. In a note that year to a genetics professor at Stanford, Rimland confessed,
“I do not understand Asperger’s syndrome very well.”

Leo Kanner made a passing reference to Asperger in a 1971 review of someone else’s autism book, but he mangled the spelling of his name. Arne Van
Krevelen, an early autism researcher in the Netherlands who spoke both English and German, knew about Asperger, but cited his work only once or twice in English-language journals. Some Russian-language journal articles also mentioned Asperger here or there. In the last decades of his life, thanks at least partly to the language barrier, Asperger’s relative obscurity to the rest of the world appeared destined to be permanent—a fact that apparently
did not trouble him much.

Then Lorna Wing found out about him.

—

I
T WAS
W
ING
’
S
husband who first stumbled across the 1944 paper. When John, who read German, translated it for her, it dawned on Wing how closely her “triad of impairments” fit those four boys from Austria. It also struck her that several British children she was treating were a remarkably good match for Asperger’s “autistic psychopaths.” At the same time, she was still processing the massive amount of data she and Gould had collected from the Camberwell Register. There, too, she had found accounts of children
who were quite intelligent and verbally proficient—much like Asperger’s boys.

In 1981,
Wing published “Asperger’s Syndrome: A Clinical Account.” In it she presented the Austrian’s 1944 cases side by side with descriptions of children she was currently seeing, showing how the children in both groups fit the description of Asperger’s “autistic psychopaths.” However, she suggested a gentler-sounding nomenclature. Noting that many people associated psychopathy with sociopathic behavior, she declared that, in her paper,
“the neutral term Asperger syndrome is to be preferred and will be used.” With that one sentence, Wing unintentionally launched a compelling new diagnosis that would sweep the English-speaking world.

As Wing made clear many times afterward, her purpose in shining a spotlight on Asperger’s paper had never been to codify his 1944 observations into a stand-alone diagnosis for the modern era. For her part, she saw
“no clear boundaries separating [the syndrome Asperger identified] from other autistic disorders,” and she did not foresee, or intend, that the diagnosis “Asperger syndrome”—a term she used only descriptively—would be handed out to thousands of individuals across the United States, Britain, Ireland, Australia, Canada, and many other parts of the world, or that it would be defined during the 1990s, both in practice and by the most authoritative psychiatric manuals, as distinct from the autism described by Leo Kanner.

Rather, Wing brought attention to Asperger’s boys for one reason only: to bolster her idea of the spectrum. She wanted to show that the medical literature was filled with descriptions of highly verbal and intelligent individuals who, because they also manifested some autistic traits, belonged on the same spectrum with those whose language and intellects were less well developed.

In fact, as an activist determined to get services for as many people as possible, she adamantly opposed breaking up the spectrum into multiple diagnoses.
“Identification of any of the eponymous behavioural syndromes,” she wrote, “is not of any practical help in this process.” She conceded that with some parents, and even some professionals
“who often cannot believe in a diagnosis of autism” when symptoms
were mild, it could be useful to employ the label Asperger’s syndrome. But it would only be to “help to convince the people concerned that there is a real problem.”

The real problem, Wing would always argue, should be called autism. But because she had triggered an interest in Asperger’s syndrome, because she had given it its name, the world assumed she was endorsing it.

—

A
SPERGER
’
S WRITING HELPED
to inspire Lorna Wing’s conception of the spectrum, but ironically, it does not seem that Asperger himself agreed that it was the best way to think about autism. In fact, based on Wing’s account of their meeting at the Maudsley, it seems that he resisted a key aspect of the idea. Over tea, she laid out in some detail why she was certain that both Asperger’s boys in Vienna and Kanner’s children in Baltimore were best understood as having the same underlying condition. For her to take this view was not at all surprising. One of the main premises of the spectrum idea was that the differences among people with autistic traits were less important than the ways in which they were like one another. Whether you were talking about those with autism whose symptoms caused severe impairment or those who seemed merely eccentric, Wing believed that there was no point in splitting them into groups based on differences in how their autism manifested itself.

Her Austrian guest argued against that way of thinking.
“Asperger, despite listing numerous similarities, considered his syndrome to be different from Kanner’s,” Wing reported.
“We cordially agreed to differ.”

Asperger drew the same clear line in a March 1977 presentation to autism parents in Switzerland—emphasizing the sharp distinction between his patients and Kanner’s. Reiterating points he had made in
a 1968 paper, he acknowledged that there were similarities between the two sets of children, and even
“complete agreement in some respects,” but he insisted that Kanner’s children were in a
“psychotic or near psychotic state,” while “the Asperger type of child is not so seriously
disturbed.” More than that, he emphasized,
“Asperger’s typical cases are very intelligent children, with extraordinary originality of thought and spontaneity of activities.” To Asperger, it was clear that the two sets of children were “basically different types” and that he and Kanner were talking about two different syndromes. The word “autistic,” he told his audience, can be applied to “disturbances…of quite different origins which can and
should be differentiated
” (our italics).

At various times, Asperger noted that typically autistic traits could appear in people of both greater and lesser mental capacity, and could be expressed in fine gradations of intensity. In contrast to Wing, he tended to brush over this observation lightly, with a single sentence or a paragraph here or there. Rather, the focus of his writing was on children with more impressive intellectual and verbal abilities. Nor did his early papers explore ways to address the challenges faced by children of lesser intellectual ability. Certainly, he never insisted on grouping them together with everyone showing autistic traits under the umbrella of “autism”—the essence of the spectrum idea.

—

I
N THE END
, Asperger’s syndrome became entrenched as a diagnosis because clinicians found it useful. There are no good statistics about the number of diagnoses of Asperger’s made in the 1980s, but by the 1990s the diagnosis was clearly in wide use, especially in Britain. It was also popular in Sweden, where Swedish researcher Chris Gillberg published dozens of studies of the syndrome. A number of other researchers’ papers dealt drily with the question of whether Asperger’s was a separate phenomenon from autism. To clinicians, the question was academic. It fit people they were seeing and, as Wing had pointed out, it was easier to deliver a diagnosis of Asperger’s to parents than to tell them that their child had autism.