In a Different Key: The Story of Autism (3 page)

PREFACE

T
he men were crying too. All around the theater. In the balcony. In the orchestra seats. On the stage, off to one side, the show’s host, Jon Stewart, was seen bringing the back of his hand to his cheek, and swiping at it. Stewart was due to step back on, but for the time being, he joined with the audience, standing and clapping, and letting the moment last—this tearful, joyful ovation for the kid and the singer in the spotlight, whose duet had just topped everything.

By 2012, Night of Too Many Stars was a New York fixture, an every-eighteen-months benefit for autism, created by Robert and Michelle Smigel. They were close friends of Stewart’s, but more important they were the parents of a teenager named Daniel, who had a most challenging form of autism. When Daniel was younger, and at the point where the Smigels realized they could never give him the ability to speak—or alter most of the other lasting limitations to his independence—they figured out what they
could
do. Robert, a longtime writer for and performer on
Saturday Night Live
, knew almost everybody in comedy. Michelle was a superior organizer and arm-twister.

The first time out, in 2003, by getting their friends to help them put on a show, they raised just under a million dollars for programs that would help people like Daniel get along in life. By 2012, the money was up to eight figures, and the stars invited to perform considered it an honor to be asked. They were big names—from George Clooney to Tina Fey to Tom Hanks to Chris Rock to Katy Perry.

It was Katy Perry’s duet, on that night in October 2012, that brought the house to tears. The song was “Firework,” one of her biggest
singles ever. But it was the eleven-year-old girl who played piano and sang with her who sparked the outpouring of emotion. Jodi DiPiazza, diagnosed with autism just before turning two, had discovered music early, practiced the piano relentlessly, and idolized Katy Perry. Sitting at a massive baby grand, with Perry standing opposite, Jodi launched into the song, keeping her gaze fixed at some point in space above the keyboard. Though she never once looked up, the whole theater spotted the slight smile when, mid-song, applause broke out for the first time. When they finished the piece, Jodi leapt to her feet and threw her arms around Perry in a long, awkward hug, which everyone there recognized as the expression of a child with autism who was, in that moment, exceedingly happy. That was when everyone cried. And when Robert and Michelle, standing in the wings, knew they had just helped create a moment that would last longer than any they had created on this stage before. They were right. By 2015, more than 9 million people had watched the DiPiazza-Perry duet online.

At one time—and it was only a generation or so ago—what happened that night in the Beacon Theatre on Broadway would have been nothing short of astounding. Back then, autism was shrouded in shame, secrecy, and ignorance—certainly not a cause to which movie stars lent their names, amid lights, limousines, and paparazzi. Indeed, the diagnosis itself does not go back far, dating only to World War II. Then, once the label existed, children who were given it—and their families—were met with ignorance and bigotry. They were barred from public schools and banished to institutions, where they remained through their adult years, often until death. Their parents, and in particular their mothers, were routinely blamed for causing their autism. So little research on autism had been done that no counterargument existed. Most people did not even know of the condition, and the word “autism” prompted almost no recognition from the general public. It was a bitter irony that parents sometimes heard themselves congratulated for having such an “artistic” girl or boy.

This book tells the story of how and why cultural attitudes toward autism shifted so profoundly, from an era when autism was isolating and almost wholly misunderstood to today, when stars flock to a Broadway
theater to talk about and raise millions for the cause. It is a story woven together from a range of sources—memoirs by parents and doctors, long-forgotten scientific writings and documentary films, newspaper clippings, archived documents, and interviews with more than two hundred people who have autism, have studied autism, or have raised children with the diagnosis. What emerges is an account of the heart, the sweat, the stubbornness, and the fight displayed by an always-evolving cast of players, whose commitment to changing the world, over three to four generations, turned autism from a condition that was barely recognized into the most talked-about, most controversial, diagnosis of our time.

Thousands were involved in bringing about that outcome: doctors and social workers, educators and lawyers, researchers and writers. More recently, individuals with autism have often taken a more active role, speaking for themselves. The most constant presence, however, is that of parents: mothers and fathers standing up for their children, driven sometimes by desperation, sometimes by anger, and always by love. Their two main goals—to find out why their children have autism, and to make it go away—remain unfulfilled, while recently some are challenging the worthiness of the goals themselves. Nevertheless, the paths those parents took, the hills they climbed and the valleys they entered, chart much of the landscape laid out in these pages.

The story of autism is actually many stories, set on different continents and overlapping in time, and circling back on one another, which can make the tale challenging to tell and not always easy to follow. Ideas cross-pollinate, major players make cameos in one another’s stories, and entire story lines unfold at different paces thousands of miles apart. But that was just how it happened. In that way, the story of autism resembles autism itself. Both defy any sort of simple, straight-line narrative.

And yet, as much as the story zigzags or circles back, there is unmistakable forward movement. Over time, because of the efforts made by parents and activists—including the many we did not have room for in these pages—public attitudes toward people given the autism label have moved in what all would agree is the right direction. The
cruelty and neglect that have marked the history of autism now seem antiquated. More and more, a new impulse has taken hold, the impulse to recognize the different among us as part of us, and to root for their full participation in the world. That project, of course, is still a work in progress. But it puts all of us in the middle of the story, right now.

PART I

AUTISM’S FIRST CHILD

1930s–1960s

1

DONALD

I
n 1935, five Canadian baby girls, all sisters, edged out Niagara Falls on the list of Canada’s most popular tourist draws. That year, up to six thousand visitors each day took Route 11 into far northern Ontario for the sole purpose of gawking at the babies. By order of the provincial government, they had recently been removed from the care of their farmer parents, to be raised instead in a hurriedly built “hospital” situated not far from the family farmhouse. There they would have indoor plumbing, electricity, and a “scientific” upbringing overseen by a full-time doctor and two full-time nurses.

Three times a day, on cue, the girls were carried out to a grass-covered “play area” just a few yards from where a crowd waited for them. The audience was packed into a specially designed viewing arcade, tented and fitted with one-way screens so that the girls could never see who was making all the noise. Invariably, the moment they came into view, a warm sigh would float aloft, followed by coos, squeals, and scattered applause at the sight of history’s first surviving identical quintuplets, who had been given only hours to live the night they were born, in May of the previous year.

Exotic by virtue of their genetic rarity, the Dionne quintuplets imprinted themselves indelibly on their generation. They were a matched set, yet unmatched in the example they set of human resilience, and the most famous children on earth. The future queen of England would visit them. Mae West, Clark Gable, and Bette Davis all made the trip north. So did Amelia Earhart, six weeks before her final flight, not to mention thousands of ordinary families on vacation.

All were transfixed, but never, apparently, troubled by the bizarreness,
even cruelty, of the arrangement—the girls’ separation from their parents and from other children, their confinement in a setting they were allowed to leave only three times over the course of nine years, their government’s exploitation of a random biological novelty to bring tourist dollars into a depressed province. It was estimated that the public exhibition of the girls, known as Quintland, increased revenues for Ontario by $110 million over those nine years.

The family shared in some of the riches as well. By the time the girls’ father sued successfully to reunite the family, well into World War II, he was driving a Cadillac. Money had also poured in from movie deals, contracts for exclusive interviews, and a series of endorsements that put the girls’ faces in almost every kitchen in America—on calendars, bottles of Karo syrup, and boxes of Quaker Oats. For years to come, no seasonal ritual came or went—not Christmas Eve, not Halloween night, not Mother’s Day—without glowing newspaper and magazine stories catching readers up with the Dionne quints.

It was no surprise therefore that the girls would also mean something to a little boy named Donald, who was growing up in Forest, Mississippi, a small town nearly as rural as theirs. Though only eight months older than them, Donald was already able to recite their names: Emilie, Cecile, Marie, Yvonne, and Annette.

Except that, for Donald, these were not the names of girls. They were colors inside bottles.

“
Annette and Cecile make purple,” he would declare as he sketched, handling his set of paint bottles. In a sense, he had it right, insofar as his “Annette” bottle contained blue paint, and “Cecile” held red. But while his color theory was sound, his reaction to the girls was peculiar. Unlike everyone else, Donald was captivated not by the girls’ humanity or the astonishing fact of their survival but by the raw geometry of their sameness. They came in an identical set of five. Just like his bottles. But they were also different, like the paint inside his bottles. It seems to have been this paradox that caught and held his attention.

If it had only been a game he was playing—some deliberate silliness or make-believe—then what Donald called his paint bottles would never have mattered much to anyone but himself. Certainly it would not be a story worth telling so many decades later. But he
was serious. Blue was Annette and red was Cecile, relentlessly and earnestly, whether Donald was drawing with crayons or talking about a candy cane. He was inflexible about this, and much else besides.

The word “yes,” for example, always had to mean one thing and one thing only: that he wanted to be hoisted up onto his dad’s shoulders. “You” was his fixed way of saying “I,” and vice versa. Some words, like “chrysanthemum,” “business,” and “trumpet vine,” he repeated endlessly, with no decipherable intention. He was once observed staring into empty space, writing letters with his fingers in the air, commenting as he went along, “
Semicolon, capital, twelve, twelve, slain slain; I could put a little comma.”

The way he thought about numbers was also unique. When he was seven, an examiner asked him a question from the Binet-Simon IQ test, as it was then called: “If I were to buy four cents’ worth of candy and give the storekeeper ten cents, how much would I get back?” “I’ll draw a hexagon,” he said in reply. Internally the gears were obviously meshing, but they seemed to slip, critically, when the task was to communicate clearly with others. His was a language of hexagons and chrysanthemums, whether it made sense to others or not.

Indeed, Donald showed scant interest in the inhabitants of the outside world, and that included his parents. Of all his peculiarities, this was the most difficult for them to accept—that he never ran to his father when he came home from work, and that he almost never cried for his mother. Relatives were unable to engage him, and when Santa showed up one Christmas, in what seems to have been a calculated effort to break through to the little boy, Donald paid him no heed whatsoever.

Seemingly oblivious to the people around him, he would turn violent the instant his activities were interrupted, whether he was sketching words in the air or spinning pot lids on the floor. Over time, it became clear that he was protecting something: sameness. Pure, unadulterated routine. He could not tolerate even the slightest changes to his physical surroundings. Furniture could not be moved, walks outdoors had to retrace exactly steps already taken, and toys had to be arranged precisely as he had left them. Anything out of place would set off wild tantrums.

Of course, this meant Donald had to be able to remember the arrangements of things, and for this he relied on his astounding capacity for recall. He could watch his father put different-colored beads on a string and then reproduce the pattern without a single glance at the original. He could rebuild a tower of blocks that had been knocked over exactly as it had been, each side of each block facing in its original direction. At the age of two, having easily mastered the alphabet, he immediately learned to recite the letters in reverse. Neither was much of a challenge, since the order never changed, backward or forward.

Odder than each of these behaviors on its own was the fact that they were locked together in a distinct combination of deficits and talents. And yet this constellation of behaviors, which shaped Donald’s personality so comprehensively and dramatically, had no name. For that reason, Donald’s mother drew the only conclusion that made sense to her, relying on the only words she could think of. With regret and sorrow, she wrote a letter in which she confessed that her little boy was “
hopelessly insane.” The diagnosis of “autism” had not yet been invented.

Mary Triplett, Donald’s mother, was the one who would change that. She and Donald’s father intended only to get help for their son, but in doing so, they set in motion a chain of events that would culminate in the discovery of autism in Donald, and the publication of the first internationally recognized description of the condition in a medical journal.