by John Donvan
9
KANNER’S FAULT
In 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.
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BLAMING 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.
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BY 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.
“I need not mention to you the book,” Kanner said, confident that his listeners, nearly all mothers and fathers of children with autism, would know that he was speaking of The Empty Fortress. “An empty book, I call it,” he added, in case anyone missed the reference.
Kanner told the parents that he had personally combed through a forty-six-page chapter, one line at a time. “On those forty-six pages,” he reported, �
�I counted about a hundred and fifty times when the author says ‘maybe,’ ‘perhaps,’ and ‘it may just be mere speculation.’ One hundred fifty times!
“Please,” he implored his audience. “Beware of the sort of people who dictatorially tell you ‘This is what it is because I say so.’ We still have to be very cautious.”
Since Kanner’s audience was better informed than most, he also took a few moments to address his own role in the mother-blaming fiasco. His approach was direct: He simply denied all responsibility. “From the very first publication to the last,” he insisted, “I spoke of this condition in no uncertain terms as ‘innate.’ ” As for the refrigerator-mother myth, that was all a misunderstanding. “I have been misquoted often as having said that ‘it is all the parents’ fault,’ ” he told the mothers and fathers. “I never said that.” This was technically true, though it neatly sidestepped his role in spreading the idea.
Then he delivered seven words, to electrifying effect: “Herewith I acquit you people as parents,” he said.
Everyone understood what he meant. He was telling all the mothers present, as well as those not present, that their children’s condition was in no way their fault.
Applause ricocheted off the wall behind him and out the windows—a burst of gratitude and relief, coming first from the mothers. On their feet, clapping, some were in tears. Fathers as well. One parent would later describe the moment as “thrilling,” for it was not just the sound of their shared appreciation floating up and beyond the ballroom. It was the sound of pent-up shame being released. Later, a parent newsletter referred to him as “Our beloved Dr. Kanner.” Leo Kanner had changed his mind on autism for the last time.
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BRUNO BETTELHEIM NEVER did change his mind. In the summer of 1971, Bettelheim appeared as a guest on Dick Cavett’s show. The refrigerator-mother theory still had standing across much of the psychiatric landscape, but there was increasing pushback. Much more had been written by then about Bettelheim himself, who was still at the University of Chicago running the Orthogenic School and taking in children with autism. It had been reported that parents were banned from the school, and that it featured a garden sculpture of a reclining mother figure, which the kids were encouraged to kick as they came and went. Yet Bettelheim was still a figure of consequence, and his thoughts on autism still shaped popular thinking on the condition.
That night, probably millions were watching when Cavett asked Bettelheim to explain autism. It was, he told Cavett, “the most severe psychotic disturbance of childhood known to man.” Cavett wanted to know more, so Bettelheim began to explain, gently and movingly, what autism in a child really represented: a form of despair.
“In order to survive,” Bettelheim said, “you have to feel that you are terribly important to somebody.”
Cavett jumped in: “That somebody cares.”
Yes, that was it, Bettelheim agreed. “In the case of these extremely disturbed children, not only nobody cared, but there was a wish that it would be much better if the child wouldn’t live.”
The next morning, across America, mothers of children with autism would be viewed differently by anyone who had watched the show the night before, and not for the better. Doctors, special-ed teachers, psychology grad students, mothers-in-law, neighbors—they had all heard it the same way. When children had autism, it was because their mothers wanted them dead.
10
BITING HER TONGUE
It was winter 1964, and they were being treated like outcasts, banished to the clump of orange plastic chairs at the far end of the hospital lobby, so close to the sliding-glass doors that whenever they shooshed open, the frozen air outside charged in to bite them. Later, a number of them would become one another’s best friends and surest sources of support. That morning, though, they were still strangers to one another, exchanging only tight smiles, pleasantries, and scraps of information. They were on guard, these women—braced against the danger that the children who darted among them, making strange movements and even stranger sounds, might hurt themselves. The very thing that connected them—their children—also set them apart. Each of the children had autism.
Since the mid-1950s—the cold, dead middle of the mother-blaming era in autism—New York’s Lenox Hill Hospital had been conducting research aimed at finding the causes of severe learning impairments in very young children. After a three-year pilot study, the hospital decided to extend the research indefinitely, using space on the ground floor of a nearby building as a laboratory. It was set up to resemble a nursery school, with the aim of expanding the children’s capacity to learn. Only three- and four-year-olds were accepted, and families had to commit to sending them five days per week. Now a new session was starting, and a new round of children was being considered for admission.
So desperate were the parents to give their children this opportunity that some traveled an hour and a half each way every day. After all, no real nursery schools accepted children like theirs. This “school” within a hospital, which had few spaces available, might be their children’s only chance to get inside a learning environment.
This was an interview day, when the women running the program evaluated the boys and girls applying for the next session. But it was not only the children who were being evaluated. The mothers were too.
One of them, a young woman named Audrey, had joined the other women on the chairs, holding the hand of her four-year-old daughter, Melissa. Her other arm was wrapped around Melissa’s two-year-old sister, Hannah. To get there, the three of them had taken two buses and hiked four long city blocks, through slush and snow. During the walk, Melissa repeatedly kicked off her shoes and tore off her mittens. But somehow they had made it to the orange chairs. Sitting there, Audrey was still unsettled by how she had been greeted when she checked in. The receptionist, hearing the purpose of their visit, had dropped her eyes, as well as her smile, and then—Audrey was quite certain of this—looked up again with a chilly expression. Without comment, she had checked off Audrey’s name on a list and then flicked her head toward the far end of the lobby, where the other mothers sat waiting. Audrey had turned away slowly, feeling defensive already.
But she had to shake it off and steel herself for the encounter ahead—her appointment with Mrs. Jaffe, the social worker. Among the mothers, Mrs. Jaffe was notorious. She was the gatekeeper, the first stop in the admissions process. Displease Mrs. Jaffe, and a child’s chance of admission was ruined then and there.
The fact was that the program staff saw these children as injured, and believed that the injury had been inflicted by their mothers. The term used by the team was psychogenic factors. It was a way of saying that some emotional trauma had befallen these children and made them autistic. Identifying the source of the trauma and divining ways to reverse the psychic damage were among the team’s chief goals. Children whose behavior was thought to have “any organic basis”—that is, a biological rather than a psychological cause—were not accepted into the program.
Women who wanted their children admitted had to submit to a battery of psychological tests. Once their children were enrolled, they had to show up weekly for mandatory “casework treatment.” The staff expressed strong opinions about both the mothers and fathers:
Among the mothers, we became aware of marked immaturity, strong hostile dependent ties to their own mothers, and depression as predominant features of their disturbed functioning. Fathers also showed markedly infantile reactions and either related on a sibling level to their children or remained withdrawn and remote from the family.
The staff found it paradoxical that, despite the many defects in their personalities, these parents were universally dedicated to finding help for their children. The mothers rarely failed to show up on their appointed day for therapy. The staff was impressed by the parents’ “willingness to follow a program at a considerable sacrifice of time, energy, and money.” Yet even this devotion to their children was interpreted as pathological, and “in part
stimulated by guilt feelings about unconscious rejection of the child.”
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THE WAIT IN the orange chairs had gone on too long. Because it was so cold by the doors, Audrey pulled Melissa close, cinching her wool cap around her ears. Melissa’s eyes were wide, as always. They shone like gemstones, inviting smiles even from strangers, who registered her slightly mysterious air of intelligent serenity. From a glance, they could not know what Audrey did—that this ethereal child, her firstborn, faced immense challenges.
One of those challenges had to do with being touched. When Audrey pulled Melissa toward her, Melissa went stiff and, with a powerful jerk of her body, broke out of Audrey’s embrace. She could not tolerate certain kinds of contact—even, sometimes, the feeling of fabric against her skin. This turned out to be one of those times. She dashed away, stripping off her hat, coat, scarf, and gloves. In the seats nearby, a few of the other mothers faced the same struggle. Their children were tearing off their outer garments and bolting for the sliding doors, drawn to the rhythm of them and to their reflections in the glass. The cold did not matter—they did not even seem to feel it. Some of them even had their shoes off.
Once again, the sliding doors opened and two or three of the boys slipped through to the sidewalk, soaking their socks in the slush. A moment later, their mothers burst onto the sidewalk to retrieve them.
Audrey wasn’t among them. Melissa, still inside, had bolted in a different direction, to the corner of the lobby that was dominated by a large potted plant. By the time Audrey spotted her, she had reached the base of the display and had one leg up on it. In that moment, the whole plant, pot and all, was starting to tip, with Melissa hanging on. Audrey sprang forward, rescuing Melissa and righting the plant. But some of the dirt spilled on the floor, and Audrey, glancing up, saw the looks on the faces of staff and passersby, who were no doubt jumping to conclusions about this “bad mother” in the hospital lobby.