In a Different Key: The Story of Autism (8 page)

For the last part of the trip, the Tripletts caught a ride outside the Lord Baltimore Hotel, which took them to the Harriet Lane Home for Invalid Children a few miles away. The Harriet Lane Home was an extension of Johns Hopkins, with staff that reported directly to Leo Kanner. Donald was to stay there for the next two weeks. He would undergo a physical exam, psychological testing, and full-time observation, which explained the little suitcase Mary brought along that morning. Yet again, Donald would be parted from his parents. But this time he would be seen by the best-known child psychiatrist in America.

—

W
HEN
D
ONALD
T
RIPLETT
and Leo Kanner were introduced, Donald, true to form, did not even acknowledge the doctor’s existence. When he entered the psychiatrist’s office, accompanied by his parents, he ignored the adults shaking hands and headed straight to the far wall, where Kanner kept a small collection of toys. While the grown-ups conversed, Donald stayed on the floor, counting, stacking, and lining up wooden blocks.

At a certain point, Kanner produced a pin and gave Donald a little prick with it. The boy flinched, but he seemed to make no connection between the slight sting and the man who had caused it; in other words, Donald was not frightened of the doctor because of it. Kanner was fascinated. “He was never angry at the interfering person,” he wrote later. “He angrily shoved away the
hand
that was in his way or the
foot
that stepped on one of his blocks, at one time
referring to the foot on the block as ‘umbrella.’ ”

Besides relying on his own observations, Kanner would also rely a great deal on those made by the team of doctors who tracked Donald’s days through the Harriet Lane Home. The place had a dormitory feel to it, with a number of other children in residence. The staff kept notes on how Donald interacted with his peers, noting especially his striking indifference to potential playmates. If one of the little girls tried to join whatever Donald was doing on his own, he invariably walked away. Occasionally, one of the boys would take a toy from his hands, which he passively allowed. Unlike when his block arrangements were disturbed, this did not seem to perturb him.

At the home, Donald’s behaviors were very much as his father had described them:

He wandered about smiling, making stereotyped movements with his fingers, crossing them about in the air. He shook his head from side to side, whispering or humming the same three-note tune. He spun with great pleasure anything he could seize upon to spin. He kept throwing things on the floor, seeming to delight in the sounds they made. He arranged beads, stick[s],
or blocks in groups of different series of colors. Whenever he finished one of these performances, he squealed and jumped up and down.

Judging by their notes, the examining team was thoroughly startled and confused by what they were seeing. On one form, in the space designated for a diagnosis, a question mark appeared, and then some guesses: “? Heller’s Disease. Schizophrenia.” The rest of the space was blank.

At the same time, they took favorable notice of Mary’s interactions with Donald. She visited the ward daily, keeping Donald company for hours. The team was apparently impressed by her capacity for giving her taxing child nearly constant attention. It was recorded in Donald’s file that “she spent all of her time developing ways of keeping him at play with her.” Kanner later concluded that Mary was “the only person with whom he had any contact at all.”

As the two weeks came to a close, Mary came by the home one last time to pack up the little suitcase and walk Donald out the door. The only other thing she needed before she left was Kanner’s diagnosis. It was, she believed, the key that would turn the lock; the signpost that would tell them where to go next. She wanted the
name
of the thing that made Donald act the way he did.

But Kanner would disappoint her in that regard. Donald was different from any other child he had treated and unlike any description in any textbook. As a result, he had no label to give her.

—

A
FTER THE FAMILY
’
S
return to Forest, Mary and Kanner launched a regular correspondence. Riveted by Donald’s case, Kanner wanted to be kept up to date on the boy’s growth and development. Mary, for her part, appreciated the psychiatrist’s interest and was keen to provide him with any information that might help him solve the puzzle of her son.

For years, they communicated at least once a month. Sometimes Mary shared the strain she was feeling. It was to Kanner that Mary confessed her despair over “the fact that I have
a hopelessly insane
child.” Kanner was quick to discourage such thinking, urging her in his next letter to “refrain from that type of gloom.” That was not the only occasion when he tried to rally her spirits. Many times, he wrote to reassure her that her efforts to help Donald were “splendid and often heroic.” Even his staff had been impressed by
“the good sense you are using.” Donald, he insisted, was fortunate in “having you for a mother.” Moreover, he shared his opinion that Donald was not necessarily stuck at his present level of development—that he still had the potential to grow.

Mary brought Donald up to Baltimore for a second time in 1939, and twice more in the following years. Kanner looked forward to these visits, as Donald’s case presented a real intellectual challenge. Combined with Mary’s regular updates, the visits kept him on top of the development of this mystifying young boy.

Mary, however, was frustrated. In 1942, four years after the first visit to Baltimore, Mary wrote to Kanner, suggesting that he had been feeding her only “generalities” regarding Donald’s condition, whereas she needed “specifics.” She wondered whether his vagueness was a tactic to spare her feelings.

Once again,
Kanner wrote back to reassure her. He insisted, first of all, that he was not holding anything back. But he acknowledged that on one level he had failed her and Beamon. “At no time have you or your husband been given a clear-cut and unequivocal evaluation,” he wrote, “in the sense of a diagnostic term.” The truth was, he confessed, that he still simply could not match Donald with any familiar or standard label, nor could he predict the boy’s prospects. His behaviors comprised a mystery that Kanner had not yet been able to solve. “Nobody realizes [that] more than I do myself,” Kanner confessed.

That letter, dated September 28, 1942—a carbon copy of which would sit undiscovered in the archives of Johns Hopkins for the next sixty-five years—coincided with a critical turning point in Kanner’s perception of Donald’s behaviors. While the portions of the letter that address Mary’s frustration sound like a frank admission of diagnostic defeat, Kanner had, in fact, already begun formulating a novel type of diagnosis.

After seeing several more children with traits similar to Donald’s,
Kanner told Mary that he had “come to recognize for the first time a condition which has not hitherto been described by psychiatric or any other literature.” So far, he reported, he had come across “eight other cases, which are very much like Don’s.” He had been keeping this news to himself, he said, because he wanted to have sufficient time to observe the children and follow their development. Soon, however, he intended to go public with these findings and to give his discovery a name.

“If there is any name to be applied to this condition of Don and those other children,” he told her, “I have found it best to speak of it as ‘autistic disturbances of affective contact.’ ” This,
Kanner’s first recorded use of “autistic” in the context of a behavior pattern like Donald’s, was followed by a brief explanation: “The main distinction lies in the inability of these children from earliest infancy to relate themselves to other people.” Critically, Kanner added, this inability to relate was present in children whose overall health and “intellectual endowment” was otherwise not significantly impaired.

Thus, it was in a private letter to a mother that Kanner first announced his recognition of the condition that came to be called autism.

Donald would be his Case 1.

4

WILD CHILDREN AND HOLY FOOLS

L
eo Kanner cultivated praise and attention, but in public he feigned indifference to the plaudits that came his way. This false modesty was on display in July 1969, long after he became famous for discovering autism, when he gave a speech to a group of parents in Washington, DC.

“I didn’t go out of my way to discover this condition,” he said, after being honored for doing just that. No, he protested, to praise him on those grounds was just “a bit exaggerated.”

“A sample of serendipity,” he called it. And then he explained how that meant being in the right place at the right time.

“I wasn’t looking for anything,” he insisted.

But then Kanner took the performance a little further than he usually did.

“I did not discover autism,” he declared.
“It was there before.”

—

I
T WAS THERE BEFORE
.

In that single sentence, Kanner summed up his opinion on what remains one of the lasting questions in the field of autism: Was the collection of behaviors he described as “autistic disturbance” a phenomenon new to the mid-twentieth century, or had these behaviors always been present but simply unrecognized?

This question was unanswerable for a number of reasons. One was the fact that medical notation and archiving were rudimentary before the twentieth century. Before World War I, no database was
ever compiled from systematic observation of the behavioral traits of individuals in any population of a statistically meaningful size. Indeed, until the late nineteenth century, psychiatry was barely practiced at all—to say nothing of child psychiatry—in the sense of a professional discipline embracing a scientific methodology, a shared vocabulary, and an agreed-upon body of findings rooted in research and practice. In that regard, Kanner’s generation was among the pioneers. The undocumented past offered no statistical basis for asserting that autism emerged only around the time Kanner saw it in Donald.

And yet when Kanner asserted the opposite—that autism was always there—that too seemed speculative.

Kanner, however, knew that in psychiatry, the obvious often went unrecognized until someone looked at it with the right set of eyes. As he tried to explain in his speech, he had not “discovered” autism as much as found the eyes with which to see it.

—

K
ANNER
’
S
“
DISCOVERY
”
OF
autism was not a sudden aha moment, but a slow dawning recognition, one that took nearly four years from when he first met Donald. That recognition culminated in 1943 in a groundbreaking article starring a boy he called “Donald T.”

By the time Kanner published his article in April of that year, the number of cases he was tracking had increased to eleven. Eight of his subjects were boys, and three were girls. The title of the article was the same as the name he coined for the condition: “Autistic Disturbances of Affective Contact.” He would soon replace this term with
infantile autism
, which merely meant, in medical terminology, that the autism was “present in earliest childhood.”

He did not originate the terms
autism
or
autistic
. Rather, they were borrowed from the symptom list of a different condition altogether: schizophrenia. This would long be a source of confusion when autism was discussed, but it made sense from where Kanner sat at the time. By 1943, schizophrenia was a widely accepted label for a mental illness that included hallucinations, disordered thinking, and other breaks with reality. Swiss psychiatrist Eugen Bleuler had also documented a
tendency among some schizophrenia patients—who were overwhelmingly adolescents or adults—to detach from interaction with their environment, and to engage exclusively with an interior reality.

Around 1910, Bleuler began using the term
autistic thinking
to describe this behavior. He derived it from the Greek word αυτο, which means “self.” Bleuler held that a certain amount of autistic thinking happened in every person’s life. It was the essence of dreaming, as well as children’s pretend play. But with schizophrenia, autistic thinking could become pathological. That might mean a complete cessation of social interaction and a drastic flattening of the ill person’s emotional connection to the surrounding environment and the people in it. This type of autistic thinking was rarely permanent. Like hallucinations and other symptoms of schizophrenia, episodes of Bleuler’s autism came and went.

Autism, therefore, had been a part of the psychiatric vocabulary for a generation already when Kanner announced to the world that he had been seeing “a number of children whose condition differs…markedly and uniquely from anything reported so far.” This new condition was reminiscent of the autism of schizophrenic adults, but it appeared in young children, he wrote. Moreover, it appeared to him that the condition was something that “the children have come into the world with.” The condition manifested itself early in life and came with its own “fascinating peculiarities,” such as flashes of a brilliance, a distinctive use of language, and a “basic desire for aloneness and sameness.” Essentially, this was a description of Donald, but the article added copious supporting details from the cases of the other ten girls and boys as well.

The article also explored how psychiatry had viewed these eleven children before Kanner suggested viewing them through the lens of autism. Without that lens, it was easy to focus primarily on the differences among the eleven. Some of them could speak, for example, while others could not. Their particular skill sets were not identical to Donald’s—who could sing and count and who had perfect pitch—or to one another’s. These differences had produced a range of diagnoses across the group before Kanner saw them. Several were institutionalized. Two had been labeled schizophrenic. One child had been
diagnosed, wrongly, as deaf. Diagnoses handed out to the others included “idiot,” “imbecile,” and “feebleminded.” As seen in Donald’s case, his evaluators at Hopkins had entertained the possibility that he had schizophrenia or Heller’s syndrome, a rare neurological condition marked by a rapid degeneration of social and motor skills. In short, nearly all the children had been judged insane or intellectually impaired.