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Tuesday, October 05, 2010

Autism’s First Child

Autism’s First Child

As new cases of autism have exploded in recent years—some form of the condition affects about one in 110 children today—efforts have multiplied to understand and accommodate the condition in childhood. But children with autism will become adults with autism, some 500,000 of them in this decade alone. What then? Meet Donald Gray Triplett, 77, of Forest, Mississippi. He was the first person ever diagnosed with autism. And his long, happy, surprising life may hold some answers.

By JOHN DONVAN and CAREN ZUCKER

IMAGE CREDIT: MILLER MOBLEY/REDUX

IN 1951, A Hungarian-born psychologist, mind reader, and hypnotist named Franz Polgar was booked for a single night’s performance in a town called Forest, Mississippi, at the time a community of some 3,000 people and no hotel accommodations. Perhaps because of his social position—he went by Dr. Polgar, had appeared in Life magazine, and claimed (falsely) to have been Sigmund Freud’s “medical hypnotist”—Polgar was lodged at the home of one of Forest’s wealthiest and best-educated couples, who treated the esteemed mentalist as their personal guest.

Polgar’s all-knowing, all-seeing act had been mesmerizing audiences in American towns large and small for several years. But that night it was his turn to be dazzled, when he met the couple’s older son, Donald, who was then 18. Oddly distant, uninterested in conversation, and awkward in his movements, Donald nevertheless possessed a few advanced faculties of his own, including a flawless ability to name musical notes as they were played on a piano and a genius for multiplying numbers in his head. Polgar tossed out “87 times 23,” and Donald, with his eyes closed and not a hint of hesitation, correctly answered “2,001.”

Indeed, Donald was something of a local legend. Even people in neighboring towns had heard of the Forest teenager who’d calculated the number of bricks in the facade of the high school—the very building in which Polgar would be performing—merely by glancing at it.



VIDEO: The authors reveal how they tracked down Donald and discuss the significance of his long, happy life.


According to family lore, Polgar put on his show and then, after taking his final bows, approached his hosts with a proposal: that they let him bring Donald with him on the road, as part of his act.

Donald’s parents were taken aback. “My mother,” recalls Donald’s brother, Oliver, “was not at all interested.” For one, things were finally going well for Donald, after a difficult start in life. “She explained to [Polgar] that he was in school, he had to keep going to classes,” Oliver says. He couldn’t simply drop everything for a run at show business, especially not when he had college in his sights.

But there was also, whether they spoke this aloud to their guest or not, the sheer indignity of what Polgar was proposing. Donald’s being odd, his parents could not undo; his being made an oddity of, they could, and would, prevent. The offer was politely but firmly declined.

What the all-knowing mentalist didn’t know, however, was that Donald, the boy who missed the chance to share his limelight, already owned a place in history. His unusual gifts and deficits had been noted outside Mississippi, and an account of them had been published—one that was destined to be translated and reprinted all over the world, making his name far better-known, in time, than Polgar’s.

His first name, anyway.

Donald was the first child ever diagnosed with autism. Identified in the annals of autism as “Case 1 … Donald T,” he is the initial subject described in a 1943 medical article that announced the discovery of a condition unlike “anything reported so far,” the complex neurological ailment now most often called an autism spectrum disorder, or ASD. At the time, the condition was considered exceedingly rare, limited to Donald and 10 other children—Cases 2 through 11—also cited in that first article.

That was 67 years ago. Today, physicians, parents, and politicians regularly speak of an “epidemic” of autism. The rate of ASDs, which come in a range of forms and widely varying degrees of severity—hence spectrum—has been accelerating dramatically since the early 1990s, and some form of ASD is now estimated to affect one in every 110 American children. And nobody knows why.

There have always been theories about the cause of autism—many theories. In the earliest days, it was an article of faith among psychiatrists that autism was brought on by bad mothers, whose chilly behavior toward their children led the youngsters to withdraw into a safe but private world. In time, autism was recognized to have a biological basis. But this understanding, rather than producing clarity, instead unleashed a contentious debate about the exact mechanisms at work. Differing factions argue that the gluten in food causes autism; that the mercury used as a preservative in some vaccines can trigger autistic symptoms; and that the particular measles-mumps-rubella vaccine is to blame. Other schools of thought have portrayed autism as essentially an autoimmune response, or the result of a nutritional deficiency. The mainstream consensus today—that autism is a neurological condition probably resulting from one or more genetic abnormalities in combination with an environmental trigger—offers little more in the way of explanation: the number of genes and triggers that could be involved is so large that a definitive cause, much less a cure, is unlikely to be determined anytime soon. Even the notion that autism cases are on the rise is disputed to a degree, with some believing that the escalating diagnoses largely result from a greater awareness of what autism looks like.

There is no longer much dispute, however, about the broad outlines of what constitutes a case of autism. The Diagnostic and Statistical Manual of Mental Disorders—the so-called bible of psychiatry—draws a clear map of symptoms. And to a remarkable degree, these symptoms still align with those of one “Donald T,” who was first examined at Johns Hopkins University, in Baltimore, in the 1930s, the same boy who would later amaze a mentalist and become renowned for counting bricks.

In subsequent years, the scientific literature updated Donald T’s story a few times, a journal entry here or there, but about four decades ago, that narrative petered out. The later chapters in his life remained unwritten, leaving us with no detailed answer to the question Whatever happened to Donald?

There is an answer. Some of it we turned up in documents long overlooked in the archives of Johns Hopkins. But most of it we found by tracking down and spending time with Donald himself. His full name is Donald Gray Triplett. He’s 77 years old. And he’s still in Forest, Mississippi. Playing golf.

THE QUESTION THAT haunts every parent of a child with autism is What will happen when I die?This reflects a chronological inevitability: children with autism will grow up to become adults with autism, in most cases ultimately outliving the parents who provided their primary support.

Then what?

It’s a question that has yet to grab society’s attention, as the discussion of autism to date has skewed, understandably, toward its impact on childhood. But the stark fact is that an epidemic among children today means an epidemic among adults tomorrow. The statistics are dramatic: within a decade or so, more than 500,000 children diagnosed with autism will enter adulthood. Some of them will have the less severe variants—Asperger’s syndrome or HFA, which stands for “high-functioning autism”—and may be able to live more independent and fulfilling lives. But even that subgroup will require some support, and the needs of those with lower-functioning varieties of autism will be profound and constant.

How we respond to those needs will be shaped in great measure by how we choose to view adults with autism. We can dissociate from them, regarding them as tragically broken persons, and hope we are humane enough to shoulder the burden of meeting their basic needs. This is the view that sees the disabled in general as wards of the community, morally and perhaps legally, and that, in the relatively recent past, often “solved” the “problem” of these disabled adults by warehousing them for life—literally in wards.

Alternatively, we can dispense with the layers of sorrow, and interpret autism as but one more wrinkle in the fabric of humanity. Practically speaking, this does not mean pretending that adults with autism do not need help. But it does mean replacing pity toward them with ambition for them. The key to this view is a recognition that “they” are part of “us,” so that those who don’t have autism are actively rooting for those who do.

Donald Triplett, the first person cast in the story of autism, has spent time in the worlds shaped by each of these views.

DONALD DRIVES HIS CAR with a light, percussive rhythm. After pressing on the gas pedal for a second, he lets up briefly, and then presses back down again. Down. Release. Down. Release. The tempo doesn’t vary. It’s late afternoon, and Donald is guiding his coffee-colored 2000 Cadillac, in hardly perceptible surges and glides, south along Mississippi’s Route 80. Though his forward posture and two-fisted grip on the wheel are those of an old man, his face beams like a boy’s. He wears the expression, at once relaxed and resolute, of a man who is doing precisely what he wants to be doing.

The day’s agenda thus far has included morning coffee with friends, a long walk for exercise, aBonanza rerun on TV, and now, at 4:30, this short drive down Route 80 to get in some golf. “I noticed,” he mentions, “you have a Lafayette County sticker on your car.” He’s broken a long silence with that comment, a reference to the registration decal on the rental we parked in his driveway. His words hang there for a moment, and then he adds: “That means it comes from Lafayette County.” That’s all. Nodding to himself, Donald goes silent again, his focus returning to the road ahead, or tuned to some inner monologue. Given his tendency to close his eyes for long moments when he speaks, this is probably the safest choice.

He parks just short of the front steps of the Forest Country Club, an establishment without pretensions. The one-story red-brick clubhouse fronts onto a well-tended, mostly flat course carved out of the woods. Membership is $100 per family per month, and a round of 18 holes costs $20 on a weekday. On any given day, the roster of players on the fairways includes lawyers and mechanics, bankers and truckers, salesmen and farmers—and Donald. Actually, Donald is there every day, weather permitting. And almost every day, he golfs alone.

Not everyone who plays here realizes that “DT”—as he’s known around the club—has autism. But his quirks are hard to miss as he makes his way to the first tee, well within sight of members who take the shade in armchairs under the club’s columned portico. A small man in khaki shorts and a green knit shirt, with a pink-camouflage bucket hat pulled down tight over his ears, Donald strides to the tee with the distinctive gait that is often a tip-off for autism—his arms out from his sides in the shape of a large capital A, his steps just slightly mechanical, his head and shoulders bobbing left-right-left in the rocking movement of a metronome.

The fact is that Donald’s not a bad golfer: tee shots mostly on the fairway, passable short game, can nail a six-foot putt. His swing, however, is an unfolding pantomime, a ritual of gestures he seems compelled to repeat with almost every shot—especially when he really wants the ball to travel.

He licks the fingers of his right hand, and then his left. Squaring himself to the ball, he raises his club skyward, until it’s straight up over his head, as if he were hoisting a banner. Sometimes he holds his arms up there for a long moment. Then he brings the club head back to earth, stopping not far from the ball, before taking it back up. He goes through a series of these backswings, picking up speed with each iteration until, stiff-legged, he inches forward to get his head over the ball. With one final stroke, he commits to contact. Crack! It’s gone, and Donald, bouncing up and down at the knees, peers down the fairway to see the result. As a swing, it’s the opposite of fluid. But it’s Donald’s own. And he never whiffs it.

Some days, Donald has no choice but to partner with other golfers, when the country club, honoring golf’s traditions as a social game, reserves the entire course for a membership “scramble.” In a scramble, golfers are randomly assigned to teams, which compete for lowest group score by picking the ball in the best position and having everyone on the team play from that spot. During one recent scramble, Donald made the rounds with Lori and Elk and Kenneth and Mary, all of whom seemed to be at least three or four decades younger than he was. But Donald held his own competitively, with his shots often enough the ones used. He also kicked in a passable amount of friendly banter, which was returned in the same spirit, though Donald’s patter tended to get repetitive: “Way to hit that ball, Kenneth!” “Way to hit that ball, Lori!” “Way to hit that ball, Elk!” At times he would entertain variations, marrying his partners’ names with words from his own private vocabulary: “Hey, Elkins the Elk!” “Hey, Mary Cherry!” “Okay, thank you, Kenneth the Senneth!”

Most of the time, however, Donald remained silent. This is in keeping with the decorum of the game, of course. But Donald appears comfortable with silence, and in a larger sense, content with the life he’s leading, which resembles—with the car and the coffee and the golf and the TV—a retirement community’s brochure version of how to live out the golden years. Donald has freedom, independence, and good health. All in all, life has turned out well for autism’s first child.

DONALD WAS INSTITUTIONALIZED when he was only 3 years old. Records in the archives at Johns Hopkins quote the family doctor in Mississippi suggesting that the Tripletts had “overstimulated the child.” Donald’s refusal as a toddler to feed himself, combined with other problem behaviors his parents could not handle, prompted the doctor’s recommendation for “a change of environment.” In August 1937, Donald entered a state-run facility 50 miles from his home, in a town then actually called Sanatorium, Mississippi.

The large building where he was housed served what today seems an odd function: preemptive isolation for children thought to be at risk of catching tuberculosis. The place wasn’t designed or operated with a child like Donald in mind, and according to a medical evaluator, his response upon arrival was dramatic: he “faded away physically.”

At the time, institutionalization was the default option for severe mental illness, which even his mother believed was at the root of Donald’s behavior: she described him in one despairing letter as her “hopelessly insane child.” Being in an institution, however, didn’t help. “It seems,” his Johns Hopkins evaluator later wrote, “he had there his worst phase.” With parental visits limited to twice a month, his predisposition to avoid contact with people broadened to everything else—toys, food, music, movement—to the point where daily he “sat motionless, paying no attention to anything.”

He had not been diagnosed correctly, of course, because the correct diagnosis did not yet exist. Very likely he was not alone in that sense, and there were other children with autism, in other wards in other states, similarly misdiagnosed—perhaps as “feeble-minded,” in the medical parlance of the day, or more likely, because of the strong but isolated intelligence skills many could demonstrate, as having schizophrenia.

Donald’s parents came for him in August of 1938. By then, at the end of a year of institutionalization, Donald was eating again, and his health had returned. Though he now “played among the other children,” his observers noted, he did so “without taking part in their occupations.” The facility’s director nonetheless told Donald’s parents that the boy was “getting along nicely,” and tried to talk them out of removing their son. He actually requested that they “let him alone.”

But they held their ground, and took Donald home with them. Later, when they asked the director to provide them with a written assessment of Donald’s time there, he could scarcely be bothered. His remarks on Donald’s full year under his care covered less than half a page. The boy’s problem, he concluded, was probably “some glandular disease.”

Donald, about to turn 5 years old, was back where he had started

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