In a Different Key: The Story of Autism (13 page)

Some made a reference to the Donald they thought of as a genius. Ann Viverette: “With that brain of yours, I’m sure you will go far.” And Joel Antley: “To one of my best friends, and one of the most brilliant students I’ve ever known.”

Joel was not the only student to call Donald a best friend. Several other boys used the same words, including Gilbert Broussard, a three-letter athlete and fellow cast member. His message read, “D.G.
you are one of the best of friends, even if you did call me a thousand fools, good luck, your pal, Gilbert B.” And the student body president, Tommy Huff, wrote under his own beaming face, “Don, you have been an inspiration to me these high school years. Best luck always.”

Just as for everyone else in his class, change was coming for Donald now. He had been accepted at East Central Community College in Decatur, twenty-five miles from Forest. Donald would be living there, which had to be daunting. And yet there is evidence that he was looking forward to the adventure.

It exists in the form of a brief message he scribbled into that same yearbook, to the right of his own picture. It was a good photo of him. In jacket and tie, hair combed, he had his eyes trained straight at the camera, a slightly quizzical half smile on his lips. It had never been easy to know what Donald was thinking, but in this case he spelled it out for anyone who might wonder. With a fountain pen, he composed a short salutation to his own future.

D.G
.

I wish myself luck
.

D.G
.

PART II

THE BLAME GAME

1960s–1980s

7

THE REFRIGERATOR MOTHER

T
he truth is, not every mother’s baby is born beautiful. Rita Tepper’s mistake was admitting that to herself the week her newborn son arrived. She was twenty-four at the time, and she had expected pink and round and cuddly. Instead, her infant boy, whom she named Steven, showed up bony, unusually long, and yellow. His off-color skin was the result of jaundice, not uncommon among newborns, and generally not much to worry about. Still, he was the color of corn. His yellow hair was strange-looking too, sticking up all over in little points. No, Rita could not call Steven beautiful. If she was honest about it, the way Steven appeared right then—scrawny, yellowish, and spike-haired—made him look an awful lot like a chicken.

Two and a half years later, in 1966, Rita would be crushed by that memory, as she was made to understand the lifelong harm she had inflicted on her son by letting the thought merely enter her mind. Steven had recently been diagnosed with a condition called autism, and she was being questioned by a social worker at New York’s Bellevue Hospital, who had been assigned to help her cope with the diagnosis.

Of course, Rita was the one with questions, but there wasn’t much the social worker could tell her. Autism was such a rare diagnosis, and so little research had been done on it, that few medical doctors knew anything about it or had even heard of it. Dr. Taft, the psychiatrist who had examined Steven a few months earlier, when he was just past his second birthday, put it succinctly when he met with Rita and her husband, Jerry:
“You have a major problem.” A few minutes later, Rita heard him say that it was probably “autism.” Taft talked for quite a while longer, but the words stopped making sense. Rita felt as though
she were watching a soap opera, but had somehow ended up in the scene itself. When she and her husband returned home, Jerry walked into their bedroom, collapsed onto the covers, and sobbed. Rita knew immediately she would have to be the strong one, even if that meant taking all the blame.

—

B
Y THE TIME
the Teppers were given the shattering news about Steven, twenty-three years—roughly a generation—had gone by since Leo Kanner had written up his account of Donald and the “novel” syndrome his behaviors suggested. By then, Donald and the other ten children Kanner wrote about were well into adulthood and scattered around the United States, and the condition we know as autism had continued to gain slow recognition as a meaningful diagnosis. Some of its criteria were still debated, and there was no consensus on the best name for it. Kanner, for example, still insisted on “infantile autism,” while some paid homage to him by calling it Kanner’s syndrome.

By whatever name, the concept had gained a certain clinical currency by 1966, the year of Steven’s diagnosis. By that time, the medical literature contained references to hundreds more children who more or less shared the kinds of behaviors that Kanner had linked together. The vast majority lived in the United States, and the greatest concentration of cases was at Johns Hopkins in Kanner’s clinic.

Still, despite the mounting numbers, almost no sustained effort was being made to scientifically explore autism’s essential nature. In part, this was because scientists viewed the condition as too rare to justify much attention. The bigger factor, however, was psychiatry’s blanket certainty that it already knew why some children had autism and others did not.

The verdict: autism was caused by mothers not loving their children enough.

This idea had put down roots in the late 1940s, when Rita Tepper was a child herself. It was still an article of faith in the 1960s, when she became a mother, and it was presented to her almost immediately after being informed that Steven had autism. Like all mothers of her generation trying to raise children with autism, Rita had to endure
knowing that the medical profession believed her son’s autism was all her fault.

—

S
EVERAL WEEKS AFTER
receiving his diagnosis of autism, Steven was enrolled in a program offered at Bellevue. But for Steven to get treatment, Rita had to agree to be treated as well. That reflected the premise of the program: the mother was part of the child’s problem, and she had to be fixed too if there was to be any hope of improvement for the child. And so, while Steven was led off to a room filled with other children needing help, Rita met with a social worker. Sometimes the meetings were one-on-one. Occasionally Rita joined a small group of other women who had children in the program. On those days, they sat in a larger room, in a circle of folding chairs.

The group meetings were intense confessionals, each mother speaking in turn as the social worker offered guidance. One by one, those in the circle would comb through memories of those hazy first weeks and months in their children’s young lives, trying to pinpoint when the autism started. But this was not a search for when they had first noticed signs of the condition. Rather, the women were straining to recall moments when they might have done something wrong—without even knowing it—something that had so traumatized their babies that they had withdrawn, for good, into their own version of reality. It was difficult, serious work, based on the assumption that their children had been born “normal” and then, somehow, their own mothers had inflicted a devastating psychic injury on them.

During the group sessions, ideas flowed. One mother confessed that she might have spent too much time focused on another of her children. Another acknowledged, with shame, that she might have grown overly resentful of the sleep she lost when her daughter was teething. Others racked their brains for examples of their own deficient mothering. All of them, including Rita, desperately wanted to figure out what they had done wrong. If they could just pinpoint the mistake they had made, then they could try to change their behavior and reverse the damage.

The memory of having once pictured her baby as a chicken did not
come back to Rita immediately. Steven’s jaundice had cleared up a few days after his birth and she had forgotten about it. Quickly, her baby had become extraordinarily beautiful in her eyes. Others saw it too. Before he could walk, when she wheeled him through their neighborhood in Rego Park, New York, passersby paid him compliments. His blue eyes were stunning, his hair golden, and his features so handsome that his face could have been used to sell baby food. But while neighbors cooed, Steven made no sound in return.

Rita began to wonder about that, especially as his first birthday came and went. Some of her friends had children his age, and those kids had started using words already. Surely Steven should be making noises, at least some effort to communicate—maybe a “mama” or “dada.” But he wasn’t.

He also didn’t seem to understand what toys were for. His dad spent hours showing him how to stack plastic, bagel-like rings onto a set of wooden pegs, the largest ring at the bottom, smallest at the top. Steven knew how to do just one thing with those rings: bang them into the floor. It was how he played with any toy placed into his hands. Whatever it was, he only wanted to pound it. It didn’t even have to be a toy. There was a set of candlesticks in the house that he liked banging more than anything else. They were made of sterling silver, and he beat them so far out of shape they could never be used again.

During visits to the pediatrician, Rita brought up the fact that Steven’s development seemed off-kilter. But the doctor always told her the same thing: that she needed to let Steven grow up at his own pace. “Let him live his life!” he would say with a warm laugh meant to tell her she was worrying too much. But he was only seeing Steven for short periods, a few minutes here and there, and only in his office—not out in the world, where, in addition to banging things, Steven was now running.

It had started as soon as he learned to walk, and at that, Steven was ahead of his age group. He rolled over early, sat up early, took his first steps early, and began to run early. It was a need, it seemed, his straight-line dash. Anytime he was placed in his stroller, his only impulse was to climb out and start running—not in circles but away,
in any direction, through any doorway, over or around any obstacle. When Rita took him to a fenced-in playground and set him down, he shot straight for the gate, then through it, then down the sidewalk.

This meant Rita, now pregnant with their second child, was constantly on the run too. Chasing after Steven, dragging the carriage with her, heaving herself into traffic to pull him back out of the rush of taxis and buses, she began to realize that this happened every single time they went to the playground. Meanwhile, back inside the fence, the other mothers sat, calm and chatting, almost never having to run after their kids and rescue them from traffic.

“You’re not doing anything wrong,” her pediatrician told her every time she asked. Again and again he encouraged her to “just relax,” intending no irony.

Then one day, when paying a house call to the Teppers, the doctor suddenly changed his mind. Steven’s sister, Alison, had arrived by then and was still only a few months old. The house call was a well-baby visit the pediatrician provided for all newborns in his practice. Rita had cleared some space atop a diaper table, and the pediatrician leaned over Alison, listening to her lungs and heart with his stethoscope. But his eyes kept shifting over to the corner of the room, where Steven was making a lot of noise, banging toys, and then suddenly leaping up to scale a high piece of furniture. The doctor watched all this, glancing back and forth between Steven making a ruckus and the peaceful baby girl on the table.

Rita, watching the doctor watch Steven, gave him a questioning look, to which he replied, “You know, I think we’re going to send him in for a screening.” It actually pleased Rita to hear this, to finally have her worries validated as more than maternal anxiety. It never would have occurred to her that whatever was wrong with Steven might be unfixable.

Weeks later, Rita sat facing the social worker at Bellevue, working through a series of questions about her earliest feelings toward Steven.

“When you first saw him,” the social worker asked, “did you feel a sort of loving feeling toward him?”

“Well, the truth is…” Rita began. The truth, she had decided,
was important. She wanted this process to work, so she decided to be completely candid. She told the chicken story.

From there, she expanded. She told the social worker that when she left the hospital after the usual five-day recuperation period prescribed for new mothers, the doctors kept Steven awhile longer, to keep an eye on the jaundice. This meant that, for several days, she had to visit the hospital to see him. It was stressful, she admitted.

Other difficulties followed after Steven came home. He immediately resisted being cuddled, pushing and straining against his mother’s, or anyone’s, embrace. He barely slept—never for more than an hour or so at a time. Therefore, neither did she.

There were also feeding problems. Steven was bottle-fed from the start, like most American babies of the 1960s, but he seemed unable to digest any of the formula he was given. Like clockwork, he would eat and then vomit—powerful jets of liquid that left their marks on the carpet, the furniture, and almost every piece of clothing she wore.

So, yes, he looked like a chicken at first, and, no, there were not many times when caring for him was not stressful. And yes, he had exhausted her. She was exhausted even now.

As Rita poured this all out, she could tell from the way the social worker looked at her that they must finally be getting somewhere. This recitation of all the problems between Steven and her—this was obviously what the social worker was looking for. And to Rita herself, it was now becoming clear where she had gone wrong, and where those other playground moms had gone right. As painful as it was to face up to it, she had no choice but to admit it to herself: she might not have shown Steven enough love.

The social worker let her drift toward this conclusion, then added some further perspective. She asked whether Rita had been disappointed with the appearance of her second baby, Alison. Rita had to admit that Alison had met every expectation she had for how a baby should look and act. Her little girl had been born pink and round and cuddly. When Rita hugged her, this baby melted into her arms. Rita was smart enough to see where this was leading. She had seen Alison as beautiful from the start, had hugged her warmly from the beginning, and she did not get autism.