In a Different Key: The Story of Autism (5 page)

In fact, Donald did begin to eat again at the Preventorium, if only because of its strict rule that required each child to eat everything on his plate. But his social isolation—the true reason for his placement—remained a problem, and so he stayed, past the three-month mark,
then six months, nine months, and a year. At the age of four, Donald was both the youngest and the longest-term
resident of the Preventorium.

—

O
F COURSE
, the Tripletts did not have to follow the doctor’s advice to send Donald away. But it would have been strange to ignore the best medical advice after they had spent so much time seeking it out.

The Tripletts had thrown everything they had at trying to find an answer for their son. They had money and, therefore, access to the best technological tools of the day: a car and a telephone. They also had the pull to get Donald seen by the best-regarded doctors. They took him to the Mayo Clinic in Minnesota, and, nearer Forest, they consulted John Bullock, the sitting vice president of the Mississippi State Pediatric Society.

In Donald’s day, these doctors, upon examining him, would likely have referred to him with terms such as
defective
. And once a child had that label—whether due to Down syndrome, epilepsy, traumatic brain injury, or for reasons the doctors could not explain—parents quickly learned what they were expected to do: put their children away. Following doctors’ orders, thousands did so.

To be sure, the advice to institutionalize was never meant to be cruel, any more than the word “defective” was intended to disparage. At the time, it was simply a clinical term that denoted a disparity from normal functioning, equally applicable to a defective heart valve. The same was true, initially, when the words “idiot,” “imbecile,” and “moron”
were designated, in 1902, to describe people operating with “mental ages” of—respectively—less than three years, three to seven years, and seven to ten years.

Throughout the first half of the twentieth century, the lexicon of disability also included “cretin,” “ignoramus,” “simpleton,” “maniac,” “lunatic,” “dullard,” “dunce,” “demented,” “deranged,” “schizoid,” “spastic,” “feebleminded,” and “psychotic.” Appearing in lectures and scholarly writings, these terms, when used by men of medicine, were intended only to be clinically descriptive and specific.

Inevitably, however, each of these words would be co-opted by
the public and deployed out of their clinical context, used to mock, wound, and stigmatize. Such shifts in meaning forced the earliest professional organization for intellectual disability in the United States to go through
five name changes in its history. Founded in 1876, the Association of Medical Officers of American Institutions for Idiotic and Feebleminded Persons became, in 1906, the American Association for the Study of the Feebleminded. In 1933, it was renamed the American Association on Mental Deficiency. In 1987, it became the American Association on Mental Retardation, and, in 2006, the American Association on Intellectual and Developmental Disabilities. “Retarded,” once one of the most neutral terms in the vocabulary of disability—a high-toned way of saying “delayed”—had long since become the root word for a variety of slurs in the culture at large.

Another term in this category was “mongoloid,” used to describe people born with Down syndrome. Later regarded as a double insult, because of its racial connotations, it was at one time so widely accepted that Benjamin Spock used a variant of it in the first edition of his
bestselling book on parenting. The term disappeared from later editions, along with Spock’s advice to parents of children with Down syndrome. His original counsel was, of course, nothing more than the conventional wisdom of the time—the advice nearly all parents were given when they were told that their child was going to grow up to be a good deal different from “normal.”

For parents who planned simply to embrace the child, to make him or her part of the family, the advice from doctors was blunt.

Don’t.

—

“Y
OU KNOW MORE
than you think you do,” Spock told mothers in his classic book,
The Common Sense Book of Baby and Child Care
, first published in 1946. It was the most quoted line of a work that would be translated into thirty-nine languages and become one of the bestselling books in history. That reassuring sentiment, like the book itself, struck a chord with young women who felt thrown off balance by the cottage industry of “experts” giving childrearing advice that sprang up in the United States in the early 1900s. Many mothers began to fear that
they were getting it all wrong—ruining their children’s lives and failing at what the experts cast as a woman’s most important contribution to society.

But here was Benjamin Spock—a Harvard graduate and a pediatrician—suggesting that everyone just relax. Spock scoffed at the prevailing view that babies’ lives conform to strict schedules, and that too much attention and coddling was a bad thing. Spock was all for love and affection and for women trusting their own instincts.

But in his first 1946 edition, he drew the line when a “Mongolian” baby entered the picture. In a section called “Special Problems,” he strongly urged that such a child be placed in an institution, and quickly. “It is usually recommended that this be done right after birth,” Spock wrote. “Then the parents will not become too wrapped up in a child who will never develop very far, and they will have more attention to give to their children who need it.” In a later edition, he appeared to recognize that parents might resist taking this step. “If placement in a nursing home or school is going to prove inevitable,” he wrote, “it’s better for the suggestion to come from the professional person rather than be left to the parents who become very guilty thinking about it.”

The rush to institutionalize mentally challenged children in the early twentieth century, when so much shame was attached to a child who was not “normal,” meant that very few families publicly discussed the challenges of raising these children. Memoirs of raising disabled children barely exist from this era, and the few that were published plainly show the pressure parents faced to rid their homes of children whose disabilities might burden the entire family.

Attorney John P. Frank gave a moving account of just this struggle in his 1954 book,
My Son’s Story
. Frank’s son Petey had been born in 1947 with a malformation in his brain that severely impaired his growth, his speech, and his intellect. The idea of sending Petey away to an institution at the age of two broke Frank’s heart, but he never questioned the necessity of doing so, because it was recommended to him by every single doctor he consulted.

Frank also received heartfelt letters from not one but two justices of the Supreme Court, where he had clerked, who also urged a
separation. Justice Wiley Rutledge told him of close friends who had hesitated to institutionalize a disabled girl and had come to regret it. “The parents would have been much better off throughout those
long years of suffering,” Rutledge told him, if they had only sent her away early. Justice Hugo Black told of a family whose decision to raise an intellectually disabled boy at home had “
cast a blight over the lives of the parents and the children.” Black urged his former clerk to avoid the same mistake and find a proper place for Petey. In the end, a placement was arranged, in a setting where he was looked after by nuns and where Petey’s mother visited him regularly for the rest of her life.
Petey died there in 2010.

Like Beamon Triplett, John Frank was a well-educated lawyer. Spock thought social class and education were important parts of the decision to institutionalize. The higher a family stood on the social ladder, the more sense it made to send a child away. In some few cases, he wrote, if the child is truly “responsive, loved and enjoyed by the family, everyone will be
happier if he stays at home.” But he thought that shame worked against this outcome. “Sadly enough,” he wrote, the “child whose parents have had only an average amount of schooling and are living happily on a modest scale makes out better.”

There were, then, squadrons of babies and toddlers, both before Spock and after, exiled from their homes, generally forever. Often families postponed the separation by a few years, because institutions tended not to take the very youngest children. It was a stage the parents passed through in isolation, confiding only to people in their inner circle. And no matter how often doctors and friends and Spock tried to talk these mothers and fathers out of feeling shame, the silence that accompanied the disappearance only reinforced that feeling. They had sent away their children in secret, and in time, the children themselves became secrets, never to be spoken of again.

—

T
HERE HAD BEEN
a light in Donald’s eyes before the Preventorium. Whatever his peculiarities, he had always been noisy and active, curious and creative. Yes, people seemed to baffle him, but with
things
he enjoyed a solid and satisfying relationship. He could be mesmerized by
numbers and notes, or lose himself in the contemplation of lists and patterns. These objects and abstractions were his connections to the world, his points of give-and-take. Even when he was demanding and stubborn, he was an irrepressible presence. But all of that went dead at the Preventorium, and almost all at once.

A photograph of Donald exists from this period, in a small hardbound report published in 1939. It is titled
The Mississippi State Sanatorium, A Book of Information
, and on page 33, there is Donald, concrete and spiritless, posed on some steps. The photo is captioned “Preventorium Children,” and in it Donald is surrounded by a dozen other kids, who are clearly reacting to something amusing. The kids are beaming, caught off guard by the joke, one girl giggling behind her fingers, the others grinning past the camera or at one another.

All but Donald. Seated in the middle, looking smaller than anyone else, he remains rigid, eyes fixed on the lens, a dead stare, lips locked in a slight frown. Donald had gone silent. The boisterous ball of fire his mother could barely contain now “
faded away physically,” according to a doctor who examined Donald. Though the place was a swirl of activity, the daily routine packed full with meals and lessons and playground visits and naptimes, the doctor noted that Donald “sat motionless,
not paying attention to anything.” Blocks, books, toy trucks, pots and pans—he stopped reaching for them. The examining doctor later concluded: “It seems that
he had there his worst phase.”

His parents must have been able to see how poorly Donald was doing at the Preventorium. The place allowed twice-monthly visits from families, always conducted outdoors on the grounds. One afternoon, during one of these visits, someone snapped a photo of Donald and his dad out on the great lawn together. Both are facing the photographer, Beamon crouched down so that he is glancing up at his son, his hands encircling Donald’s waist. Beamon grins widely, coaxingly, straining to make the picture work. Donald wears an expression that is hard to interpret—somewhere between complaint and confusion. The boy who once smiled for the camera is no longer smiling.

Time after time, these visits would end with Donald being led back inside through the imposing white columns, and with Mary and
Beamon driving away, silencing every instinct they felt to take him back home.

In 1938, Mary and Beamon had a second child, a boy they named Oliver. He arrived in May, about nine months after they had driven with Donald to Sanatorium. It felt like they were making a new start. Over and over again, Mary had been told things like:
Move on with your life. Have more children. Devote yourself to the ones who can benefit from it
. Now she was complying with at least the second part of the prescription. And there could be no doubt that, after Donald left, and before the second baby came, the Triplett household had become more
convenient
to live in, more like the one she grew up in. One in which she and Beamon could enjoy quiet conversation over supper; where they didn’t hesitate to have people over; where at last she could get a full night’s sleep every night.

Once baby Oliver arrived, the three of them could go out and, to any casual passerby, look the part of a typical young American family, baby in tow, parents focused on his future. Finally, they were living the model of parenthood Mary and Beamon had imagined for themselves—the one the magazines talked about when they dispensed advice on how to survive the strains and uncertainties that could overwhelm a young mother.

For Mary, the ordinariness of those strains was a blessing. At the same time, she knew that if those casual passersby knew there was a Donald, many of them would have reassessed the “model couple” walking past with the baby in the stroller. Donald, even in exile, would be seen as a stain on the family. Reactions would range from pity to contempt, for the values of the day were unforgiving. Mary and Beamon’s bloodlines, once crossed, had produced a “defective” child.

There is no way for us to know how much shame Mary and Beamon felt, but we know that during their youth, a campaign was under way, fought by intelligent, zealous, and influential Americans who believed that children like Donald were a danger to society and, worse, not fully human. This campaign had an enormous effect on how mental disability was perceived in the United States, not only when Donald was a child but for decades afterward. In a very real way, Donald, four
years old and shut away, with only his parents to stand up for him, had enemies out there.

—

I
F THERE WAS
a model family, it was the Kelleys of Isle of Hope, Georgia. The front-page headline in the
Savannah Press
told the story in 1924:
KELLEYS WIN IN
“
FITTER FAMILIES
”
CONTEST
. The medal winners were pictured as well: James Kelley, a teacher and school principal, sits unsmiling but serene, with his two well-groomed young daughters, Elizabeth and Priscilla, positioned on either side of him; his wife, also identified as a teacher but never named, stands behind them, not smiling either.