In a Different Key: The Story of Autism (15 page)

Critics were awed by Bettelheim’s devotion to helping autistic children and called the book “brilliant.”
The New Republic
anointed him “a hero of our time.” Eliot Fremont-Smith of the
New York Times
called
The Empty Fortress
“as much a philosophical and political book as it is a scientific one.” He felt that Bettelheim, in discussing the challenge of reaching children with autism, was examining the universal challenge of communicating across barriers of all sorts. “It is inspiring,” he wrote, as evidence that “the alienations in our age…need not be accepted as the permanent condition of man.”

Bettelheim’s descriptions of the children were vivid and compelling. Marcia, for example, was obsessed with the weather.
“She studied it with intense fascination,” Bettelheim wrote, “and for a long time it was the only thing she would talk about.” People with autism can become entirely fixated by, and trapped inside, a single obsessive interest that takes over their lives. But weather had a special significance for Marcia, he explained, which could only be understood when the word itself was broken into the three smaller words it contains: “We/eat/her.” Bettelheim explained that the girl’s obsession with the wind, temperature, and precipitation grew out of a deep fear that her mother “intended to devour her.” He reported that, after working with him, the girl “was well on her way to complete recovery” from autism.

A second, more discussed, case in
The Empty Fortress
was that of “Joey, a Mechanical Boy.” Bettelheim had written previously in
Scientific American
about this same child—how, because he had been
“completely ignored” by his parents when he was little, he had developed an
image of himself as a piece of machinery, which in turn belonged to a larger machine, which was the world. Joey was interested primarily in mechanical things, especially fans, while avoiding contact with people.

Why fans? Because they rotate, Bettelheim theorized, and circles have a special symbolic meaning to children with autism. “I believe it to be that they circle around and around, never reaching a goal,” he wrote. “The child longs for mutuality. He wants to be part of a circle consisting of him and his parents, preferably with him as the center around which their lives revolve.”

Bettelheim reported that Joey broke out of “the vicious circle” on the day he spontaneously crawled under a table and imagined laying an egg that contained himself. When he symbolically pecked his way out, he was reborn and was suddenly many steps closer to a cure. “He broke through and came into this world,” Bettelheim wrote. “He was no longer a mechanical contrivance but a human child.” As to what was really going on, Bettelheim believed: “If the mother is the crucially dangerous person, then to be nursed by her is like being poisoned….Thus a birth entailing nursing might have seemed too dangerous to Joey. But if he were born out of an egg, he could fend for himself the minute he crawled out of his shell. There would be no need to nurse from the breast.”

Joey too was reported to have “recovered,” returning home after nine years at the Orthogenic School, then successfully attending and completing high school.

Vicious. Dangerous. Devouring
. These were some of Bettelheim’s favorite expressions for conveying the causes and effects of autism. Autism, as he saw it, was a decision children made in response to the cold, nasty, threatening world in which they found themselves. Babies arrived fine and healthy, took a look around their lives, and realized they couldn’t handle the ugly circumstances into which they’d been born. Before long, they “deliberately” proceeded “to turn their backs on humanity and society” in order to survive.

Bettelheim believed he had witnessed this firsthand, not in children, but in grown men, who had found themselves trapped inside one of the most vicious and devouring habitats ever constructed—the Nazi concentration camps. Symptom by symptom, Bettelheim matched the ways he saw men break down at Dachau and Buchenwald with autistic
behaviors in youngsters. Children with autism often avoid eye contact? He had seen it before.
“This is essentially the same phenomenon as the prisoner’s averted gaze,” he explained. “Both behaviors result from the conviction that it is not safe to let others see one observing.” He had also seen prisoners fall into the paralysis of daydreaming. This, he knew, “was a close parallel to the self-stimulation of autistic children, as in their repetitive twiddling.”

And on it went. Prisoners given to memorizing lists of names or dates to maintain their sanity were like autistic children who compulsively memorize train timetables. Inmates who clung to the hope of returning to the world that existed before their lives were destroyed evoked the autistic child’s need for sameness. And so forth.

The behaviors matched up, perhaps, for readers who had no personal experience of autism and found Bettelheim’s analogies intriguing. There was also the satisfaction of feeling privy to something esoteric. Above all, readers felt they had learned a brutal but necessary truth:
Mothers cause their children’s autism
. This was, after all, the logical extension of his argument linking autism and the camps. If it was the Nazis who crushed the spirit of those grown men, then it was mothers who broke their children. The analogy was complete: Mothers as camp guards. Mothers as Nazis.

Bettelheim was aware of how harsh his indictment sounded. In the years to come he would take pains to point out that he never once called mothers Nazis. That was a distortion put forward by unfriendly critics, he said, repeated by people who had never actually read his book. For that matter, he personally never invoked the term “refrigerator mother,” though this coinage would be attributed to him often.

Indeed, while Bettelheim became the most eloquent mother blamer, he could always argue, truthfully, that he was not the first. That distinction belonged to the expert quoted in
Time
back in 1948—years before Bettelheim became involved—the one who described children who “never defrost.” It was then that the refrigerator-mother metaphor was born, and its author was a man whose respectability, and whose standing in child psychiatry, was unquestioned. That man was Leo Kanner.

9

KANNER’S FAULT

I
n 1949, Leo Kanner published his third major article on what he continued to call early infantile autism, based on his treatment of some fifty children with the condition. In it, he never mentioned Mary, or the Triplett family, by name, so she almost certainly never learned of the portrait he painted of her there. It was surprisingly unflattering.

It was not only Mary who came in for harsh treatment in the article. The other parents of the children he treated were also judged and found wanting. “Impossible to disregard,” he wrote, were a set of features seen in “the vast majority”: “coldness,” “seriousness,” “obsessiveness,” “detachment.” He went on about the “mechanical type of attention” they paid to their children and the pervasive “maternal lack of genuine warmth”—so pronounced that he could see it within seconds when new families arrived at his clinic. “As they come up the stairs,” he wrote, “the child trails forlornly behind the mother, who does not even bother to look back.”

At one point, his 1949 journal article turned to a scene from the Triplett household. He and Mary were talking while Donald, not quite twelve, was in the room. In his article, Kanner recorded the scene that took place: “Donald, the patient, sat down next to his mother on the sofa. She kept moving away from him as though she could not bear his physical proximity. When Donald moved along with her, she finally told him coldly to go and sit on a chair.”

The same eyes that had been able to “see” autism before anyone else had come to view parental rejection as central to the phenomenon, quite probably a cause of it.

Kanner next suggested that Mary and Beamon calibrated their affection based on Donald’s ability to perform. He wrote scathingly of their pushing the young boy into pointless precocious achievements, such as memorizing lists of names. Many of the parents were guilty of this, he wrote. “Unable to enjoy their children as they are,” they focused on getting the kids to meet certain objective targets: “the attainment of goodness, obedience, quiet, good eating, earliest possible control of elimination, large vocabularies, memory feats.” The frozen-out children met these performance demands, Kanner suggested, in “a plea for parental approval.” And when they exploded in tantrums, this “serve [d] as an opportunity—their only opportunity—for retaliation.”

In summary, he concluded that children with autism “seem to be in an act of turning away from [their home] situation to seek comfort in solitude.” It was a protest against their entrapment inside the “emotional refrigerators” of their home lives.

—

B
LAMING PARENTS WAS
a significant shift for Kanner. After all, one of his key insights about autism in 1943 had been that “the children’s aloneness” was evident “from the very beginning of life,” and that their autistic nature could not be attributed exclusively—or perhaps at all—to early parental relations. To the contrary, Kanner had earlier drawn an important line between autism and schizophrenia by insisting that autism was innate. In the closing sentence of that landmark 1943 paper, he used the word “inborn” for emphasis:
“For here we seem to have pure-culture examples of inborn autistic disturbances.”

Moreover, he had previously had only the most positive things to say about Mary Triplett. He had mentioned to colleagues how capable she was as a mother. And in their own correspondence, he had repeatedly made clear that he admired her.

Kanner never explained why, in the late 1940s, he decided to make Mary look cold, or why he painted parents in general as at least partly to blame for the autistic behaviors of their children. Indeed, many years later, he would deny that he’d ever held such parent-blaming views and insist that he had been misquoted. But that was not true.

This much is certain: Before Kanner started using the refrigerator
image, his discovery of autism was largely ignored. For the first several years after his 1943 article featuring “Donald T,” his description of children with inborn “infantile autism” was barely talked about in the medical literature. It drew, at most, a handful of citations. Neither did the popular press pay any attention. Not a single newspaper or magazine article made mention of the condition Kanner described. More tellingly, no one was confirming what he was seeing anywhere else in the world. Through 1950 or so, virtually all cases of autism were diagnosed in Baltimore, Maryland, by Leo Kanner himself. In short, Kanner was getting no validation from colleagues that he had discovered anything.

On the contrary, people Kanner respected told him that he hadn’t, in fact, discovered anything. Louise Despert, a New York psychiatrist whom Kanner esteemed highly, wrote him that everything in his paper about Donald read “
almost word-for-word” like a case history of schizophrenia. They had a lively correspondence about this, over the course of which Kanner clearly began to waver in his convictions about the significance of his own findings. He even revised his textbook during this period, moving infantile autism to the schizophrenia category. But, as if he was still having trouble making up his mind, he gave it a subhead of its own.

Perhaps something similar lay behind his newfound focus on parents’ role in causing autism. Calling autism inborn went against the main tide of thinking about mental illness. In the view of psychiatry, mental illness was always caused by traumatic emotional experiences, and mothers were almost always held to have played a part in the problem. With schizophrenia, there was even a term for this: the “schizophrenogenic mother.” If autism belonged in the schizophrenia column after all, it is easy to see how Kanner might start pondering what mothers had done to bring on autism in their children.

Tellingly, it was only after Kanner began talking about children stuck “in emotional refrigerators” that
Time
magazine wanted to write about autism, and that the rest of the psychiatric field began to take notice. As his onetime assistant Leon Eisenberg later observed:
“When Kanner coined the term ‘refrigerator mother,’ his view of autism became more fashionable.” Kanner himself called 1951 the turning point
for autism’s stature as a concept. That year, he later said, was when
“the state of affairs changed abruptly” and his findings began to acquire currency.
Some fifty-two articles and one book focused specifically on the subject between then and 1959, and autism began to be diagnosed in children overseas—first in Holland, and then elsewhere.

Kanner, instead of sticking by his initial conviction about autism being inborn, had flinched. And thus the diagnosis he had invented began to gain momentum and notoriety, and the refrigerator-mother myth was set loose upon the world for many years to come.

—

B
Y
1966,
WHEN
every psychiatrist and social worker was telling Rita Tepper and other mothers that their child’s autism was their fault, Kanner had quietly returned to thinking that he had been right the first time—that autism was something kids were born with, and that a mother’s love, or lack of it, had nothing to do with it. Kanner may have read some of the early studies demonstrating distinct patterns of sensory reception in the children, which suggested a neurological component to autism. He was also mentoring a young researcher named Bernard Rimland, who was making a persuasive case that the condition was organic. Impressed, Kanner urged Rimland to keep going.

Something else may have pushed Kanner away from the mother-blaming camp. He had only disdain for Bruno Bettelheim. No doubt it was galling that the most widely read book on autism in the 1960s had Bettelheim’s name on the cover rather than his own, but it was not only that. When he looked at Bettelheim’s work, he saw mostly bombast and unexamined assertions. In 1969, he openly ridiculed the book and the man before a gathering of parents in Washington, DC.