In a Different Key: The Story of Autism (17 page)

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.

—

A
UDREY 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.

—

I
N
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.

11

MOTHERS-IN-ARMS

R
uth Sullivan had no patience for sob sessions. Yet now, on this winter’s evening in 1964, as she slipped out of her overcoat and began introducing herself to the thirteen other mothers in the room, she feared that was what she was in for. Like her, these other mothers had all recently been to the same psychiatrist, here in this very office building in Albany, New York, to get their “problem” child seen. Ruth’s boy Joe had been to see this woman three times. Now the psychiatrist was urging the mothers to form a group, where they could get to know one another and share their feelings about the stresses at home.

Ruth, however, was not there to share her feelings with these women. She was there to recruit them. She had big plans: to get them organized, and to show what mothers like them could get done for their children. Sitting around feeling bad about how hard things were at home was not, in her mind, part of the program.

—

R
UTH HAD STOPPED
doubting herself the morning she saw Joe do a jigsaw puzzle upside down. For some time, she had been nagged by a feeling that he was not like her other children in some crucial way. Six months earlier, Joe had stopped speaking, even though, up to that point, he had seemed to be developing normally. At the same time, he was extravagantly ahead of schedule in other areas of development. He was more agile than most children his age. Only two, he was a far better runner and climber even than some older children in the neighborhood.

And then there were these puzzles. He was working on one just then, a map of the United States, whose parts were sprawled, like him, all over the kitchen floor and through the doorway into the living room. He was getting it done: New Hampshire met Maine, and New Mexico snapped in next to Arizona. But he was getting it done fast, almost
too
fast, Ruth felt, for a two-year-old. On a hunch, she knelt down to Joe’s level and pulled the map apart, scattering the pieces. She also, deliberately, turned each piece upside down, so that only the gray-brown backing was showing. Then she watched what Joe did with them.

He seemed not even to notice. Pausing only for a moment, Joe peered into the pile of pieces, then reached for two of them. They were a match. He immediately snapped them together, backside-up, between his knees on the floor. It was his new starting point. From there he kept going, building, in lifeless monochrome, out of fifty pieces, a picture of nothing.

It gave Ruth a chill to see her hunch borne out so starkly.

—

R
UTH WAS A
faculty wife, married to a professor of English in western Louisiana. As a former army nurse with a master’s in public health, she knew how to gain access to the medical system. Asking around, she learned there was a child psychiatrist practicing over the Texas border, in Beaumont, who made the two-hour drive to a clinic near her home one day a month. She got Joe in to see him in March 1963. It would be the first time she was forced to focus on the word “autism,” because the doctor had no doubt about the diagnosis.

Joe was an obvious case, he told her, given his peculiar combination of skills and deficits, overlaid with the characteristic lack of interest in other people and hyper interest in objects. The fact that both Ruth and her husband were so well educated filled out the profile. Though it would later be disproved, Kanner had written about it again and again: autism appeared strongly associated with families of high-achieving, highly intelligent parents. He didn’t say that to Ruth, whose only question, at that point, was what lay in store for her son.
“He will always be
a little odd,” he added, and then began talking about perhaps putting Joe in an institution when he was older.

Five months later, when William landed a teaching post at the College of Saint Rose in Albany, the family moved to upstate New York, about 150 miles north of Manhattan. With the greater availability of child specialists there, Joe was soon seen by two more child psychiatrists and two different pediatricians, all four of whom, as it happened, had trained under Leo Kanner. All confirmed the diagnosis of autism.

Ruth was not a crier—certainly not in front of people she barely knew. The verdict frightened her, but her first instinct was to be stoic, even appreciative about having the diagnosis confirmed. Ruth was a doer by nature, a problem solver, an organizer. She was active, for example, in the League of Women Voters, a group that had worked for decades to promote civic and political engagement by women. A challenge gave her focus, and clarity gave her motivation. As a nurse, she liked to think in terms of going on the attack against illness, which required knowing what it was.