In a Different Key: The Story of Autism (16 page)

“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.

—

B
RUNO
B
ETTELHEIM 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

I
t 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.”

—

T
HE 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.

—

“A
ND HOW ARE
we this morning?”

By the time the question was put to her by the infamous Mrs. Jaffe, Audrey was a wreck, and not just because she had very nearly missed catching Melissa when the plant keeled over. No, it was the fact that, for her, every day was like this one, and so few people seemed to understand what mothers like her—raising children like Melissa—went through.

Audrey, thirty-three, had lived with being a “refrigerator mother” a few years longer than Rita Tepper. Melissa had been born in 1959, four years before Rita’s son Steven was born. The hostile attitude the two women confronted, however, was identical. The perception of mothers as the chief cause of autism was constant and unchanging, almost monolithic—the same for women who faced it in the early ’50s as it was for women who faced it in the ’60s.

Yet although Audrey and Rita faced the same hostility, they reacted to it very differently. Rita, who had studied psychology, was inclined to believe that she must have unintentionally done something wrong that caused her baby to retreat into his autistic world. Audrey’s perspective was different. No doubt she had made mistakes, like any mother. But
she knew that nothing she had done could have caused the extreme behavior Melissa had exhibited from the very first; the very idea was cruel. She sometimes felt vague twinges of guilt, of course, but virtually all mothers did. Intellectually, she was certain that those who blamed mothers relied on a distorted interpretation of psychoanalytic thought.

And yet, the near constant stress wore her down so much—to the point that she feared she was disintegrating—that she did see a psychotherapist for a time. She went on the off chance that doing so might somehow help her help Melissa, as well as her marriage, which was clearly in trouble. For more than a year, once a week, she took two buses, followed by a long walk, to get to the psychotherapist’s office. He worked for an organization that offered a sliding scale and, at $1.25 a session, Audrey could just afford it. But the two of them did not click. The day she asked to borrow a dime because in her rush to get out she had forgotten her return bus fare, he insisted on analyzing why she had forgotten the fare and refused to lend her the ten cents. She walked home.

Audrey could not escape the mother-blaming message. Her husband’s uncle was a Viennese-born psychiatrist in the Freudian mold, and she knew he blamed her for Melissa’s behaviors. He had helped launch the Lenox Hill program, and he had been the one to tell her about it.

And so, as Audrey faced Mrs. Jaffe, who had begun asking questions, it hit her that she was in a setting where mother blaming was the starting premise. It galled her to be going through this interrogation; she wanted nothing more than to stand up and say what a sham the whole mother-blaming idea was. But she didn’t. One of the other women had warned her that it was best to play along. Based on her own quick assessment of the Mrs. Jaffe situation, she knew how she had to present herself—as pliant and deferential, the kind of mother who posed no unnecessary or inconvenient questions. And so, Audrey bit her tongue. For Melissa’s sake.

—

A
UDREY WAS AN ARTIST
—a painter first, and later a sculptor—whose photorealistic paintings would, a year or two later, be recognized as
groundbreaking.
In 1978, her painting of Anwar Sadat would be featured on the cover of
Time
, and some of her other works would be purchased for the permanent collection of the Guggenheim and other prominent art museums. But at the time she was still scraping by, largely unrecognized.