Autism’s First Child

October 2010, Atlantic Monthly, and Reaching Out - Reaching In, October 2010.

By John Donvan and Caren Zucker

Michelle Cheney brought this story to my attention. It’s about Donald, now 77, the first person to ever be diagnosed with "autism." What does his story have to say to you? Below is an excerpt only, read the whole thing here

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. (To page 6)

(Autism’s First Child - ) 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, a Bonanza 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.