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.”
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.
“AND 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.
AUDREY 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.
Audrey had been on fire about drawing and painting since early childhood, attending a special New York City public high school for the arts and graduating from one of the nation’s leading art colleges, Cooper Union, followed by a master’s program at Yale. After that, she just kept painting, though only late at night. In 1958, she married a musician, a talented cellist. But after Melissa came along, her husband was absent more than he was present, especially as Melissa’s problems became more evident. To Audrey, however, Melissa’s problems had always been evident, even in the first days on the maternity ward, when she had the sense that her baby’s responses were off.
When the attending pediatrician stopped by, she put the question to him: “Doctor, do you think my baby can hear properly?” The doctor looked down on Melissa dozing in her bassinet, breathing easily, eyes shut. There was a pause while he bent in for what seemed to be a closer look. Then, without warning, he raised both hands, spread them wide apart, and slammed them hard into the sides of the bassinet. Melissa, startled awake, began to howl. “She can hear,” he said as he left the room. Hours later, Melissa was still crying.
For the next five years, Audrey would never really rest again. The arrival of a new baby always forces parents to recalibrate their lives, but Melissa’s homecoming was several orders more disruptive than that. Her first year she rarely slept, and never for more than one hour at a time. When awake, she often screamed for hours. When she babbled, she did not sound like other infants. A few words emerged when she was about a year and a half old, but those vanished, and no others followed. Audrey, meanwhile, was always with Melissa, always searching for ways to intuit her thoughts and wants, and for ways to soothe her. But Melissa flinched when Audrey held or snuggled her.
Audrey was alarmed to discover that although she was extremely sensitive to touch, Melissa seemed oblivious to pain. Once, after she had started to walk, she somehow wedged her foot under a steam radiator that Audrey knew was scalding to the touch. Melissa, however, remained still, not crying—simply staring at the invisible attractions that always seemed to captivate her. When Audrey rushed over and managed to gently release Melissa’s foot, the skin was a harsh red where it had pressed against the metal. A large blister soon formed—a second-degree burn.
If left unattended in a room for more than a few minutes, Melissa invariably toppled or tore up whatever she could reach and climbed furniture to get to whatever was out of reach. Her coordination was poor as well, so even when she tried to perform small tasks, like pouring herself a glass of milk, whatever she was holding would slip from her fingers and smash on the floor. She didn’t understand that food needed to be taken out of its wrappers and tried to swallow packaged food, such as cheese slices, plastic and all. When Audrey reached between Melissa’s teeth to keep her from choking, Melissa bit down so hard that she drew blood. Yet Audrey knew that Melissa did not mean to hurt her.
In 1961, Hannah was born. But even with another daughter to love, Audrey felt a deep sense of loneliness. She filled the hours by pushing her two girls around the neighborhood, in and out of small shops and supermarkets—any establishment that would allow them to linger a bit. Other families in the neighborhood turned in the other direction when Melissa began making strange movements with her fingers in front of her eyes. The feeling of isolation was all-encompassing; Audrey knew no one who understood what she was going through. She didn’t feel she should confide in even her closest friends in the art world, where women artists were expected to forgo motherhood if they hoped to be taken seriously. That she had a special-needs daughter would have been incomprehensible to many of her colleagues, perhaps even held against her. She had trouble making even her own extended family understand that Melissa’s behavior was not something that could be fixed by a good spanking or two.
During one of many trips to the library to pore over textbooks in search of insight into Melissa, Audrey finally came across one that listed symptoms that matched those of her daughter. Autism. It was a relief to know there was a name for her daughter’s condition. At the same time she learned that experts believed autism was more or less the mother’s fault. But there was nothing in that book or any other that offered advice and support to a mother trying to raise such a child. There were days when Audrey curled up on the cold bathroom floor and wept.
She would have cracked had it not been for her painting. Somehow she found the time to keep at it, working into the early-morning hours, using the intervals when Melissa finally gave in to exhaustion and slept for an hour or two. Despite the demands on her as a mother, she made sure to maintain contact with the art world. When a gallery owner who had asked to see her work saw one of her recent paintings, he told her on the spot that he wanted it. In fact, he scheduled a gallery opening around it.
The night of the opening, Audrey was just stepping out her front door when she heard a loud crash from inside the apartment. Rushing back in past the babysitter, she threw open the door to the bathroom and found the floor a sopping mess. Melissa had both faucets running, and the toilet was somehow flushing itself over and over, overflowing the bowl. Going down on her hands and knees, Audrey yanked up her sleeve and reached into the bowl, fishing out two diapers, some wooden blocks, and a chunk of clay. She wasn’t sure what had caused the crash, but Melissa seemed unhurt and so did Hannah. Audrey wiped her fingers clean, fixed her lipstick, and headed for the gallery, where for the next several hours, over wine and cheese, she accepted the compliments of a crowd of art lovers, and shook every hand offered.
AUDREY MUST HAVE succeeded at pretending to be the ultra-cooperative person she imagined Mrs. Jaffe required. Melissa, she was told, could start right away.
As it turned out, the best thing about the Lenox Hill program was that it introduced Audrey to some of the closest friends she would ever make: other mothers who were living with the same crushing sense of isolation. Now they became one another’s allies, guardian angels, and sounding boards. Each was married, and a few were previously well connected socially—one was a published novelist, another was the wife of a prominent jazz musician. But in every case, the fathers had pulled away from the marriage. One husband was seeking a divorce while demanding custody only of the couple’s non-autistic child. It depressed Audrey to see how haggard and beaten down her new friends looked. Years later, after she had lost touch with some members of the group, she would learn that three of them hadn’t lived to see fifty. It saddened her to realize that her looks too reflected how she felt—stringy hair, food-stained sneakers, clothing that sagged.
But although becoming close to the other mothers would be a comfort, that day in 1964 when Audrey first brought Melissa in to start the program was perhaps the most painful moment of her life. It was a gray and rainy day. The lab school was on the ground floor of a brownstone on Seventy-Seventh Street, a few steps below street level. Audrey rang the bell, and a woman she didn’t know opened the door a crack, grabbed Melissa by the wrist, pulled her inside without a word, and slammed the door shut.
There was a reason for that abruptness. The program was built around the idea of therapeutic “mothering,” delivered to the child by a teacher or a social worker. Their attention and affection would be the antidote to the damaging mothering the child had received at home. The door was slammed on Audrey because no real mothers were wanted in there, contaminating the treatment.
Audrey stood in the downpour, crying, as it all hit her: Melissa was so in need of help and there was so little of it, except from people who treated Audrey as though she were poison. A passing police officer saw her and pulled over to see if she needed help. The question struck her as almost comical. She knew she needed to pull herself together.
She had become good at that, at least. She crossed Seventy-seventh Street and went into a coffee shop. She would wait there and calm down. In a few hours, Melissa would be hers again. And that night she would be back at her easel again.
IN 1964, Audrey could not imagine how the medical establishment’s conviction that mothers were to blame would ever change. In 1967, the most influential of all mother-blaming books, Bruno Bettelheim’s The Empty Fortress, would be published, leading her to feel that she must be alone in dismissing his ideas as absurd and destructive.
In fact, she was not. Even as Audrey spent her days calming Melissa and her nights making art, parents were organizing to break Bettelheim’s hold on the conversation about autism. Indeed, by the time Bettelheim took his own life in March 1990, the obituaries made plain how much the tides had shifted. Though newspapers called him a “renowned figure in child psychotherapy,” there was little mention of his argument that autism resulted from mothers wishing their infants dead. As the New York Times noted blandly, “The point of view is now regarded as outmoded.”
If it was regarded as outmoded, that was due to a concerted effort, launched by parents in the 1960s, to replace mother blaming with research into the causes of autism, increased support of families, and meaningful help for their children. As the parents learned early on, the obstacles to these goals were not easily vanquished.
Then again, these parents were not easily vanquished either.