Autism’s First Child

By John Donvan and Caren Zucker


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, ofForest, Mississippi. He was the first person ever diagnosed with autism. And his long, happy, surprising life may hold some answers.
   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.
   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.

R. PETER GERHARDT waves a credit card in his right hand, animated—as he often is—about the point he’s trying to make. This time, it’s a trick that he guarantees makes it impossible to swipe the card the wrong way. “You can slide it this way, or like this, or stick it in like this”—he jabs straight into the air in front of him, as if into a bank machine—“and if you keep your thumb in this position on the card, you will always swipe it the correct way.”

Closer examination clarifies: the card he is holding is a Visa, and his right thumb completely covers the blue-on-white logo in the lower right corner, the sweet spot that makes the trick work. Keep your thumb there, Gerhardt pronounces, and the magnetic stripe will always line up properly, regardless of the type of card reader.
Gerhardt’s demonstration isn’t intended merely for news-you-can-use convenience. Rather, he’s explaining how using a bank card fits into the bigger picture that has defined his career since he embarked on his doctorate in educational psychology at Rutgers in the early 1980s: the struggle people with autism face to be accepted into a world occupied by “the rest of us.”
The truth is that we often deny to adults with autism the kind of empathy and support we make readily available to children with the condition—or, for that matter, to people with white canes at crosswalks. We underestimate their capabilities, reveal our discomfort in their company, and display impatience when they inconvenience us. The people standing in the back of a long supermarket checkout line aren’t always going to say or do the nice thing when some odd-looking man in front is holding the whole place up because he can’t figure out the credit-card swipe. It’s in that moment, Gerhardt says, that the thumb-on-the-logo trick is a matter of “social survival.” If the man with autism can navigate this situation successfully—and, just as important, be seen doing so—Gerhardt argues that our collective acceptance of people with autism in “our” spaces will tick up a notch. If the man fails, it will go the other way.
Gerhardt, who is a former president of the Virginia-based Organization for Autism Research and is now developing a program focused on adolescence to adulthood at the respected McCarton School in New York, is considered among the top experts in the country working with adults who have autism. But he jokes that this is chiefly because he’s never faced much competition. “I have an entire career,” he says, “based on people not wanting my job.” Child development is the hot area in autism research; working with adults, Gerhardt says, “is not a career move.” Adults present greater challenges: they are big enough to do real violence in the event of a tantrum; they are fully capable of sexual desires, and all that those imply; and they’re bored by many of the activities that can distract and entertain children with autism. “People want to treat these adults like little kids in big bodies,” Gerhardt says. “They can’t. They’re adults.” As such, he argues, they’re equipped, as much as any of us, with the recognizable adult aspiration of wanting to “experience life.”
“It’s having friends,” Gerhardt explains. “It’s having interesting work. It’s having something you want. It’s all the things the rest of us value, once given an opportunity.”
Gerhardt wants priority given to teaching the kinds of skills adults with autism need in order to survive independently: keeping track of money, asking for directions and then following them, wearing clean clothes, navigating public transport, recognizing a dangerous person, and—of extreme difficulty for most—looking a job interviewer in the eye. Gerhardt disputes the doubts he hears even within his profession about encouraging adults with autism to aspire to independence. “What’s the worst thing that can happen?” he asks. “You know—he’s at the supermarket and he drops some eggs, or somebody thinks he’s a little weird. I would rather he be there alone, and only getting nine out of 10 items he came shopping for, than need me there with him to get all 10. That’s a much better way to live.”
This leads to the question of where they will live. As it is, 85 percent of adults with autism still live with parents, siblings, or other relatives. But what happens when that is no longer an option? Large-scale warehousing is gone—and good riddance, most say. An obvious alternative is residential arrangements offering multiple spaces to people with autism, who can share support services under one roof in a setting that really is a home. At present, however, given both start-up costs and resistance from neighbors, the number of spaces in such homes is limited, and landing a spot can be extremely difficult: nationally, more than 88,000 adults are already on waiting lists.
All of which leads to an unsettling answer for those parents asking what happens, after they die, to their children with autism. We don’t really know.

BROTHERS: A recent family snapshot of Donald with Oliver (right)
MOST LIKELY, DONALD’S name would never have entered the medical literature had his parents not had both the ambition to seek out the best help for him, and the resources to pay for it. Mary Triplett had been born into the McCravey family, financiers who had founded and still controlled the Bank of Forest. Uncommonly for a woman at that time, particularly in that milieu, she had a college degree. After a doomed romance with a local cotton farmer’s son, whom her family forbade her to marry—he later went on to renown as six-term segregationist U.S. Senator James “Big Jim” Eastland—she instead married the former mayor’s son, an attorney named Oliver Triplett Jr. With a degree from Yale Law School and a private practice located directly opposite the county courthouse, Oliver would later hold the position of Forest town attorney and would be admitted to the bar of the Supreme Court of the United States. He was an intense man who had suffered two nervous breakdowns, and who could get so lost in his thoughts that he’d return from walks in town with no recollection of having seen anyone or anything along the way. But as a lawyer, he was considered brilliant, and when he proposed to Mary, her family apparently raised no objections.
Their first son, Donald, was born in September 1933. A brother came along nearly five years later, while Donald was in Sanatorium. Also named Oliver, the baby stayed behind with his grandparents in Forest when, in October 1938, the rest of the family boarded a Pullman car in Meridian, Mississippi, headed for Baltimore. Donald’s parents had secured him a consultation with the nation’s top child psychiatrist at the time, a Johns Hopkins professor named Dr. Leo Kanner.
Kanner (pronounced “Connor”) had written the book, literally, on child psychiatry. Aptly titledChild Psychiatry, this definitive 1935 work immediately became the standard medical-school text, and was reprinted through 1972. No doubt Kanner’s stature was enhanced by his pedigree—he was an Austrian Jew with a medical degree from the University of Berlin—while his nearly impenetrable accent perfectly fit the image Americans had in mind when they used the word psychiatrist.
Kanner would always seem slightly perplexed by the intensity of the letter he had received from Donald’s father in advance of their meeting. Before departing Mississippi, Oliver had retreated to his law office and dictated a detailed medical and psychological history covering the first five years of his elder son’s life. Typed up by his secretary and sent ahead to Kanner, it came to 33 pages. Many times over the years, Kanner would refer to the letter’s “obsessive detail.”
Excerpts from Oliver’s letter—the outpourings of a layman, but also a parent—now hold a unique place in the canon of autism studies. Cited for decades and translated into several languages, Oliver’s observations were the first detailed listing of symptoms that are now instantly recognizable to anyone who knows autism. It is not too much to say that the agreed-upon diagnosis of autism—the one being applied today to define an epidemic—was modeled, at least in part, on Donald’s symptoms as described by his father.
Their little boy, Oliver wrote, had almost never cried to be with his mother. He appeared to have withdrawn “into his shell,” to “live within himself,” to be “perfectly oblivious to everything about him.” Entirely uninterested in human beings—including his parents, for whom he displayed “no apparent affection”—he nevertheless had several obsessions, including “a mania for spinning blocks and pans and other round objects.” He was fascinated with numbers, musical notes, pictures of U.S. presidents, and the letters of the alphabet, which he enjoyed reciting in reverse order.
Physically awkward, he also had intense dislikes: milk, swings, tricycles—“almost a horror of them”—and any change in routine or interruption of his internal thought processes: “When interfered with he has temper tantrums, during which he is destructive.” Generally nonresponsive when his name was called—he seemed not to have heard—he instead had “to be picked up and carried or led wherever he ought to go.” When asked a question, if he answered at all, he generally kept his response to one word, and then only if it derived from something he had memorized. Certain words and phrases captivated him, and he would loop them aloud endlessly: trumpet vine,business, chrysanthemum.
At the same time, Donald exhibited some prodigious, if isolated, mental skills. By the age of 2, he could recite the 23rd Psalm (“Yea though I walk through the valley of the shadow of death …”) and knew 25 questions and answers from the Presbyterian catechism by heart. And the random humming he engaged in while spinning blocks turned out not to be quite so random after all. Rather, he always picked three notes that, if played simultaneously on a keyboard, would blend into a perfect chord. Alone in thought, Donald gave the impression of a quite intelligent little boy, working through some sort of problem. “He appears to be always thinking and thinking,” his father wrote. He was, in a heartrendingly comprehensive phrase, “happiest when left alone.”
When Kanner finally met Donald, he confirmed all this, and more. Donald entered the room, Kanner later recalled, and headed straight for the blocks and toys, “without paying the least attention to the persons present.” Kanner had a trick up his sleeve that today would draw disapproval: he pricked Donald with a pin. The result was revealing. Donald didn’t like it—it hurt—but he didn’t like Kanner any less for doing it. To Kanner, it seemed that he could not attach the pain to the person who’d inflicted it. Throughout the visit, in fact, Donald remained completely indifferent to Kanner, as uninterested in him as in “the desk, the bookshelf, or the filing cabinet.”
The surviving medical records of that initial visit contain a notation preceded by a question mark:schizophrenia. It was one of the few diagnoses that came even close to making sense, because it was clear that Donald was essentially an intelligent child, as a person exhibiting schizophrenia might easily be. But nothing in his behavior suggested that Donald experienced the hallucinations typical of schizophrenia. He wasn’t seeing things that weren’t there, even if he was ignoring the people who were.
Kanner kept Donald under observation for two weeks, and then the Tripletts returned to Mississippi—without answers. Kanner simply had no idea how to diagnose the child. He would later write to Mary Triplett, who had begun sending frequent updates on Donald: “Nobody realizes more than I do myself that at no time have you or your husband been given a clear-cut and unequivocal … diagnostic term.” It was dawning on him, he wrote, that he was seeing “for the first time a condition which has not hitherto been described by psychiatric or any other literature.”
He wrote those lines to Mary in a letter dated September 1942, almost four years after he’d first seen Donald. The family had made three follow-up visits to Baltimore, all equally inconclusive. Perhaps hoping to allay her frustration, Kanner added that he was beginning to see a picture emerge. “I have now accumulated,” he wrote, “a series of eight other cases which are very much like Don’s.” He hadn’t gone public with this, he noted, because he needed “time for longer observation.”
He had, however, been working on a name for this new condition. Pulling together the distinctive symptoms exhibited by Donald and the eight other children—their lack of interest in people, their fascination with objects, their need for sameness, their keenness to be left alone—he wrote Mary: “If there is any name to be applied to the condition of Don and those other children, I have found it best to speak of it as ‘autistic disturbance of affective contact.’”
Kanner did not coin the term autistic. It was already in use in psychiatry, not as the name of a syndrome but as an observational term describing the way some patients with schizophrenia withdrew from contact with those around them. Like the word feverish, it described a symptom, not an illness. But now Kanner was using it to pinpoint and label a complex set of behaviors that together constituted a single, never-before-recognized diagnosis: autism. (As it happens, another Austrian, Hans Asperger, was working at the same time in Vienna with children who shared some similar characteristics, and independently applied the identical word—autistic to the behaviors he was seeing; his paper on the subject would come out a year after Kanner’s, but remained largely unknown until it was translated into English in the early 1990s.)
Kanner published his findings in 1943, in a journal called The Nervous Child. Since writing to Mary the previous year, he had added two more cases to this total: 11 children, 11 histories. But he started the story with Donald.
FOR ALL THE PROGRESS that Donald has made in the decades since—the driving, the golfing—conversation is an art that continues to elude him. He initiates on occasion, but his purpose is generally to elicit a piece of information he needs (“What time is lunch?”) or to make a passing observation (his comment about the sticker on our car). A regular chat, the casual back-and-forth of kicking around an idea, is something he has never experienced.
When asked questions—even questions that invite some elaboration—he responds in a terse, one-way manner, like a man working his way through a questionnaire.

Topic: Donald’s sense of achievement at being able to multiply in his head

“Donald, how does it make you feel that it just comes out of your head?”

“It just comes out.”

“Does it make you feel good?”

“Oh yes, oh yes.”

“Can you describe it?”

“No, I can’t describe it.”

Topic: Donald’s memory of meeting the mentalist Franz Polgar 

“Donald, do you remember Franz Polgar?”

“Yes, I do remember Franz Polgar.”

[Silence.]

“When did he come?”

“Actually he came twice. He came in 1950 and 1951.”

[Another long lapse.]

“Who was he?”

“He was a hypnotist.”

“Can you tell me what he was like? Was he an old man?”

“He was probably 55 years old. And he’d be 110 if he were living.”

As is clear from these exchanges, Donald’s thinking likes to go to numbers—even when, as in this case, his arithmetic appears faulty—to dates and calculations and constants that order the world concretely and do not require interpretation. He even has a habit of assigning numbers to people he encounters, a sort of internal indexing system. An old acquaintance named Buddy Lovett, who resides one town over, in Morton, Mississippi, told us that Donald had assigned him the number 333 sometime in the late 1950s. Though he had not seen Donald for several years, he urged, with a hint of mischief, “Next time you see him, go ahead: ask him what my number is.”
Indeed, the next day Donald nailed Lovett’s number almost before hearing the end of the question. We ran this test several times, presenting the names of people all over Forest who had told us of being “numbered” over the years. Donald recalled every one, without hang or hiccup, though he can’t explain the underlying system. The numbers just come to him, he says, and then stay forever.
Likewise, those who receive a Donald Number seem to remember it for the rest of their lives. An indelible distinction, a recognition they’ll never have to share—it may feel akin to an honor.
That is almost certainly not what Donald intends. Honor is one of those concepts—an abstraction arbitrating between the ideal and the actual—unlikely to come easily to someone like Donald, who is far more comfortable in a world ordered by established facts, by what literally is. This is why it is generally believed that people with autism have difficulty lying, or appreciating a joke. Although Donald obviously enjoys pondering lists of people, places, and things, he does not engage easily with implication, mood, or emotion.

Topic: The death of his mother, Mary Triplett, who took care of Donald for 52 years

“Donald, when did your mother die?”

“It was 1985. May 1985.”

“Do you remember where you were?”

“I was at the bank. Her doctor had said it was just a matter of time … and I got the word saying that she had passed away with congestive heart failure.”

“Do you remember how you felt?”

“It was rather expected. I wasn’t really downhearted or weeping or anything like that.”

“Were you not downhearted because … ?”

“I just don’t react. Different people react differently to situations like that.”

Asked whether he missed his mother, he replied—questionnaire again—“Yes, I miss her.” He said he also misses his father, whose death in a 1980 car accident he described in a similarly matter-of-fact manner. He recalls that his dad’s accident was a shock and, again, that he didn’t cry.

PETER GERHARDT TELLS the story of his friend Tony, who was 55 years old when he got a crash course in the condolence hug. Tony, diagnosed with autism as an adult, had lived all his life under the same roof as his mother. Then she died.

The funeral marked the first time in his life that Tony had been placed in the category of “the bereaved,” and, as he mingled among the other funeral-goers, he learned that people in his position must be prepared to accept some intense and lingering hugs. He handled it fine, observing how his brother was responding to the same sorts of approaches, and comprehending that the people doing this were trying to help him not feel sad. Then he went home, hugged his neighbor, and nearly got arrested.
It was the day after the funeral, and the elderly woman who lived next door—not a close family friend, but someone kindly observing the custom of bringing meals when there’s been a death—came to his door with food she’d prepared. Tony thanked her, and she offered condolences.
According to Peter Gerhardt, what happened next is a textbook example of the kind of misunderstanding that bedevils people with autism. “Tony thought, Well, she offered condolences. I’m supposed to hug her. So he went to hug her.” Gerhardt notes that the woman undoubtedly sent off strong social signals that she did not want to be embraced. But Tony failed to pick up on them: “He hugged her, probably somewhat awkwardly—a little too long, a little too hard, a little too low—because she went home and called the police [reporting] a sexual assault by the man next door.”
To Gerhardt, this serves as a parable for interactions between people who have autism and those who don’t: neither party did anything wrong, but neither knew enough to get it right. Tony, a man bright enough to have earned a college degree, simply lacked the instinctive experience—theteachable experience, Gerhardt contends—to tell whether or not a person wants a hug. He was sufficiently self-aware to understand that he was missing vital cues, but he had no idea what they were. He later explained to Gerhardt: “The rules keep changing on me. Every time I think I learn a new rule, you change it on me.”
The answer to this problem, Gerhardt argues, is the right kind of education for the many Tonys out there. At present, he contends, schooling for children with high-functioning levels of autism overemphasizes traditional academic achievement—trying to learn French or the state capitals—at the expense of what someone like Tony really needs, a set of social skills that keep him from making mistakes such as hugging his neighbor the wrong way. These skills—like knowing how to swipe a Visa card—are not generally taught to kids with autism. And once they become adults, the teaching, in all too many cases, stops completely. In general, state-funded education ends the day a person with autism turns 21. Beyond that, there are no legal mandates, and there is very little funding. “It’s like giving someone a wheelchair on a one-month rental,” Gerhardt says, “and at the end of the month, they have to give it back, and walk.”
But there was another side to the equation in the hug incident: the neighbor’s lack of education on the character of autism. Had she been more aware of Tony’s condition, and what it might occasionally entail, she might not have felt so threatened. At the very least, had she understood the situation, she could have simply told Tony that she’d like him to let go, rather than hoping he’d read social cues that were invisible to him.
As it was, the whole situation was quickly defused: Tony’s brother arrived and offered both the neighbor and the police an explanation of Tony’s disability, and she declined to press charges. But, as Gerhardt notes, a little more information on both sides might have prevented this misunderstanding in the first place.
DONALD LIVES ALONE NOW, in the house where his parents raised him. Enshrined in honeysuckle and shaded by several old oaks, a few minutes’ walk from Forest’s faded business district, the house needs some paint and repairs. Several of its rooms—including the dining and living rooms, where his parents welcomed visitors—are dark and musty with disuse. Donald rarely enters that part of the house. The kitchen, bathroom, and bedroom are home enough for him.
Except for once a month, that is, when he walks out the front door and leaves town.
Perhaps the most remarkable aspect of Donald’s life is that he grew up to be an avid traveler. He has been to Germany, Tunisia, Hungary, Dubai, Spain, Portugal, France, Bulgaria, and Colombia—some 36 foreign countries and 28 U.S. states in all, including Egypt three times, Istanbul five times, and Hawaii 17. He’s notched one African safari, several cruises, and innumerable PGA tournaments.
It’s not wanderlust exactly. Most times, he sets six days as his maximum time away, and maintains no contact afterward with people he meets along the way. He makes it a mission to get his own snapshots of places he’s already seen in pictures, and assembles them into albums when he gets home. Then he gets to work planning his next foray, calling the airlines himself for domestic travel, and relying on a travel agent in Jackson when he’s going overseas. He is, in all likelihood, the best-traveled man in Forest, Mississippi.
This is the same man whose favorite pastimes, as a boy, were spinning objects, spinning himself, and rolling nonsense words around in his mouth. At the time, he seemed destined for a cramped, barren adulthood—possibly lived out behind the windows of a state institution. Instead, he learned to golf, to drive, and to circumnavigate the globe—skills he first developed at the respective ages of 23, 27, and 36. In adulthood, Donald continued to branch out.
Autism is a highly individualized condition. The amount of room the brain makes available for growth and adaptation differs, often dramatically, from one person to the next. One can’t presume that duplicating Donald’s circumstances for others with autism would have the effect of duplicating his results.
Still, it’s clear that Donald reached his potential thanks, in large part, to the world he occupied—the world of Forest, Mississippi—and how it decided to respond to the odd child in its midst. Peter Gerhardt speaks of the importance of any community’s “acceptance” of those who have autism. In Forest, it appears, Donald was showered with acceptance, starting with the mother who defied experts to bring him back home, and continuing on to classmates from his childhood and golfing partners today. Donald’s neighbors not only shrug off his oddities, but openly admire his strengths—while taking a protective stance with any outsider whose intentions toward Donald may not have been sufficiently spelled out. On three occasions, while talking with townspeople who know Donald, we were advised, in strikingly similar language each time: “If what you’re doing hurts Don, I know where to find you.” We took the point: in Forest, Donald is “one of us.”
For a time, Donald’s care was literally shifted out into the community. Kanner believed that finding him a living situation in a more rural setting would be conducive to his development. So in 1942, the year he turned 9, Donald went to live with the Lewises, a farming couple who lived about 10 miles from town. His parents saw him frequently in this four-year period, and Kanner himself once traveled to Mississippi to observe the arrangement. He later said he was “amazed at the wisdom of the couple who took care of him.” The Lewises, who were childless, put Donald to work and made him useful. “They managed to give him [suitable] goals,” Kanner wrote in a later report.

They made him use his preoccupation with measurements by having him dig a well and report on its depth … When he kept counting rows of corn over and over, they had him count the rows while plowing them. On my visit, he plowed six long rows; it was remarkable how well he handled the horse and plow and turned the horse around.

Kanner’s final observation on this visit speaks volumes about how Donald was perceived: “He attended a country school where his peculiarities were accepted and where he made good scholastic progress.”
Likewise, during high school, when Donald was again living back home with his parents, it appears his ways were mostly taken in stride. Janelle Brown, who was a few classes behind Donald (and the recipient of Donald Number 1,487), remembers that although he was teased a few times, he was generally regarded as a student who was enviably intelligent, even “brilliant”—again a legacy of his famous multiplication skills and brick-counting act. She recalls his sitting with a notebook and filling page after page with numbers, and her impression, as well as that of others, that they were seeing evidence of a superior mind at work.
It’s clear in all this that with the passage of time, Donald’s focus gradually turned outward. He increasingly came to terms with how his world was shaped, at the same time that his world was adjusting to him.
By 1957, he was a fraternity brother—Lambda Chi Alpha—at Millsaps College in Jackson, Mississippi, majoring in French and performing in the men’s a cappella choir. (The choir director, we were told by one member, never used a pitch pipe, because he took any note he needed directly from Donald.)
The Reverend Brister Ware, of the First Presbyterian Church in Jackson, was a fraternity brother and roommate of Donald’s. “He was a dear friend,” Ware says, recalling that he tried in various ways to give Donald a hand up socially, though “it was challenging to integrate him.” While training to be a water-safety instructor, he set out to teach Donald how to swim, “but the coordination was not so good for him.” Undaunted, Ware set another goal: “I thought I would try to open up his personality,” by introducing Donald to what was then a cool verbal affectation making the rounds, a way to pronounce the word yes as “yeeeeeeees.” Ware’s encouragements—to “put a little emotion and feeling and savoir faire into it”—again proved futile.
Ware was clearly rooting for his classmate, as were, he says, the other members of the fraternity. “I knew he was a little bit strange,” he admits. “But he’s genuine … I feel so lucky to have had him as a friend”—a friend, by the way, who gave Ware a number: 569.
Throughout Donald’s youth, it helped, no doubt, that the Tripletts had money—the money to get Leo Kanner’s attention in Baltimore, the funds to pay room and board at the Lewises’ farm. As the town’s bankers, they also had status, which may have discouraged the sort of cruelty that can come to people like Donald. One insightful resident of Forest put it this way: “In a small southern town, if you’re odd and poor, you’re crazy; if you’re odd and rich, all you are is a little eccentric.” When Donald was grown, the family bank employed him as a teller, and an irrevocable trust fund established by his family pays his bills to this day. The fund, according to his younger brother, Oliver, was designed with controls that ensure, as he put it, “some gal wouldn’t be able to talk Don into marrying her and then abscond.” In fact, Donald has never expressed any interest in girlfriends, nor has he had one.
But he has his brother—they dine together every Sunday, along with Oliver’s wife—and he has a community that has always accepted him, since long before people in town had heard the wordautism. Tranquility, familiarity, stability, and security—if we were talking about healing, these would create an ideal environment. Forest provided all of them for Donald, who didn’t need to heal. He needed only to grow, and that he did, spectacularly. In one of her later letters to Leo Kanner, Mary Triplett reported: “He has taken his place in society very well, so much better than we ever hoped for.” There were still difficulties, of course—she confessed to the psychiatrist, by this time a friend, “I wish I knew what his inner feelings really are”—but her fears of having borne a “hopelessly insane child” were long past. By the time she died, Donald had grown into manhood, learning more about the world and his place in it than she could ever have imagined in those early years.
But he never could count bricks. This, it turns out, is a myth.
Donald explained how it had come about only after we’d been talking for some time. It had begun with a chance encounter more than 60 years ago outside his father’s law office, where some fellow high-school students, aware of his reputation as a math whiz, challenged him to count the bricks in the county courthouse across the street. Maybe they were picking on him a little; maybe they were just seeking entertainment. Regardless, Donald says he glanced quickly at the building and tossed out a large number at random. Apparently the other kids bought it on the spot, because the story would be told and retold over the years, with the setting eventually shifting from courthouse to school building—a captivating local legend never, apparently, fact-checked.
A common presumption is that people with autism are not good at telling fibs or spinning yarns, that they are too literal-minded to invent facts that don’t align with established reality. On one level, the story of Donald and the bricks demonstrates again the risks inherent in such pigeonholing. But on another level, it reveals something unexpected about Donald in particular. At the time of that episode, he was a teenager, barely a decade removed from the near-total social disconnect that had defined his early childhood. By adolescence, however, it seems he’d already begun working at connecting with people, and had grasped that his math skills were something that others admired.
We know that, because we finally asked him directly why he’d pulled that number out of the air all those years ago. He closed his eyes to answer, and then surprised us a final time. Speaking as abruptly as ever, and with the usual absence of detail, he said simply, and perhaps obviously, “I just wanted for those boys to think well of me.”

John Donvan (Donald Number 550) is a correspondent for ABC’s Nightline. Caren Zucker (Donald Number 549) is a television producer and the mother of a teenager with autism. They’ve been collecting forgotten stories of autism for a book.

RUNNERS

Danielle is a runner...
  I know there are other runners out there, I've met more than a few. However, I've never met one as adept or dedicated to the art as Danielle. Fortunately for us, Dani is more of a sprinter/middle distance runner so as long as she doesn't get a big lead, you can probably catch her given the right circumstances.
  For those of you who are unfamiliar with Runners, they are exactly what the name implies; kids that run away at a moments notice. Runners can present a major hazard to those around them and are sometimes a danger to themselves. For example, Danielle has no apparent understanding of crosswalks, traffic flow or traffic patterns. Walking near busy streets with Danielle requires strict concentration on both her part and ours. A lapse in concentration could allow Danielle to run blindly into traffic. 
  Danielle's M.O. is to walk at your side and, ever so slightly, pick up the pace. She usually gauges her lead on how fast she thinks the person walking next to her might be. (She's really good at this.) With Kathy, her lead is about 5 to 10 feet, with me her lead is as much as 20 feet. Once she reaches the proper space, she will sprint away from you as fast as she can. If your hands are full, or you're not paying attention or there are obstacles in your path, the race is on. At best, it's annoying as heck, at worst it is very dangerous. 
This is a story taken from my journal from 2006:

We dropped Kat and Taylor off at the Aquarium. I was really hoping that Danielle would want to go in this time but I guess she isn't ready yet. I don't understand how she could love the Aquarium so much and all of the sudden be so terrified of going inside. I wish I could just understand what is going on inside her little head. I don't know if it's the dark entrance or the turnstiles or the sounds coming from inside but it didn't bother her the first 25 times she went there. In fact, she loved running through the Aquarium and playing with the hands-on exhibits and water toys. I hope she learns to enjoy these things again.
      Me and Dani drove down to Lover's Point to play on the beach. It was a perfect day with no clouds, light breeze and sunshine; no overcast. We walked through the field at Lover's Point and there were lots of people laying on the grass and playing frisbee. We walked over to the stone staircase leading down to the little cove at the foot of the 25' cliff. The area was packed with families and lots of small kids. There were sea otters playing  in the distance, a scuba diving class taking place about 200' down the beach from us. There were a bunch of kids looking for sea shells on the beach. Danielle jumped right in and started playing with all the other kids, as usual. After about two and a half hours, Kathy called me on the cell phone and said she and Taylor were ready to be picked up.

  By this time, Danielle was a complete mess. She got her pants wet so she stripped down to her underwear. (In reality, she is too big to do this type of thing. Most parents put an end to this type of behavior at 4 or 5 years old. It's been an ongoing struggle but one we have to get control of.) She removed her shoes, socks, jeans and shirt. All she was wearing was her panties and t-shirt.
  I told Danielle that we were going to leave and she began to throw a mini-tantrum. As usual, it only lasted a few seconds and she stomped off towards the stairs leading up to the field. I went over to pick up her clothes and as soon as I took a few steps, I realized my mistake; I allowed Danielle to violate the 20' lead zone. I turned and told Danielle to stop. She looked back at me and slowly began to smile. I really messed up, I knew my time was limited.
   I was really afraid that she would fall running up the stairs. These stairs were made of stone. They were at least 20-25' high, over looking a beach with huge granite stones; some the size of automobiles. I was terrified that she slip and fall down the stairs or get to the top and fall off the ledge. I decided not to make any sudden moves. She probably just wants attention, so I'll slowly, quietly pick up her clothes and walk up the stairs.
  I picked up her clothes, shoes and socks and when I turned around, Danielle was at the top of the stairs looking at me with that sly smile of hers. Now, I know I am in deep, deep trouble. If I run up the stairs, she will surely turn and run. If I tell her to stay and quietly walk up the stairs, I may have a chance.
  I looked at Danielle and sternly said, "Danielle, you stay right there and don't you move!".As I'm saying this, Danielle's grin is getting bigger and bigger. I decided not to look her in the face, just walk purposefully up the stairs as if I "know" she will obey my command.

  As I reached the top of the staircase, I saw that Danielle had used the past few seconds to extend the distance between the two of us. There she stood, thirty yards in front of me, looking me in the eye. Experience has taught me that any sudden movement will cause Danielle to sprint blindly in any given direction. The key to this type of situation is to remain calm, cool and collected.

  The first step is the obligatory Survey. The "Survey" calls for a quick recon of the area to check for targets of possible collateral damage. I slowly looked over my left shoulder. Possibility 1, there were several couples laying around on blankets. Some were having picnics, others were just enjoying the afternoon sunshine and atmosphere. Okay, worse case scenario, Danielle will run right through their picnic spread, squashing their egg salad sandwiches and kicking over their Guave Juice. That would be really bad.
  Possibility number 2, our truck is parked in that direction. It's at least one hundred yards away so I have time to catch her if she decides to make a break for it. That's given I can actually run one hundred yards. It's been a long time...I might have to drop the clothes and come back for 'em.
  Possibility number 3, There is a group of guys playing soccer. Danielle could try and get involved in their game. Most she could do is interfere with a kick or attempt to steal their ball. That's the preferred scenario, no harm no foul. Comfortable after completing my scan for possible "hotspots" to my left, I slowly turned and looked over my right shoulder .What I saw next made my heart skip a beat.

  If you are not familiar with Carmel/Monterey in the Spring, it can be surprisingly cool; sometimes it can be down-right chilly. Overcast, sixty-five degree days are not uncommon for this time of year. Not today, this was and picture perfect, 78 degree Chamber of Commerce kind of day. The Monterey Bay is full of beautiful colors, especially on sunny days. There are various shades of dark blue. There is the occasional purple hue on top of the water that comes from some of the plants and kelp. There is the aquamarine blue that you find in some of the shallow ponds and tide pools and of course, the most crisp white you've ever seen in the waves as they break across the black, brown and gray rocks and stones. This was their backdrop...The green grass of Lovers Point, the white pillars, rows of white roses, the beautiful royal red carpet with gold trim, the rows of white chairs; whoever this was, their wedding planner was surely patting her/himself on the back. Twelve members of the Marine Corp Honor Guard in full dress uniforms, stood on either side of the aisle with their glistening swords crossed high overhead. The wedding guest all stood as the flower girl started up the aisle and under the crossed swords of the Marine Honor Guard. I saw the father whispering to his daughter as she took his arm and they started up the aisle and under the crossed swords of the Marine Honor Guard. I was horrified.
  This was "THE" day for this couple, their family and loved ones. Everything they've planned for months, perhaps years was all wrapped up in this ceremony. There's a person video taping the ceremony, for "future enjoyment". Little did they know, an uninvited guest about to make a grand entrance.
  I slowly looked over at Danielle as she was turning to look at me. She saw exactly what I saw and she knew exactly what I knew. She knew I didn't want her to go towards the wedding, call it instinct, intuition or whatever. Perhaps she saw it in my face. Whatever the reason, we both reacted simultaneously. I dropped the clothes and sprinted as fast as I could towards the wedding. Danielle had a shorter distance to cover but I had the angle and was gaining quickly. I wanted to shout as loud as I could, "DANIELLE MILLER YOU STOP RIGHT THIS MINUTE!".  I couldn't say a word, the video tape was rolling, and I didn't want to be heard screaming on their wedding video for "future enjoyment". We were both running as fast as possible. I'm running for my life and dignity, Danielle is running for my humiliation and torment.
  Just as Danielle is about to run onto the red carpet and under the crossed swords of the Marine Honor Guard, I dive to attempt a gentle, yet firm tackle. Danielle's little feet dart by as my chest hits the ground. On to the royal red carpet with gold trim, under the glistening swords of the Marine Honor Guard and right in step behind the father and his daughter on one of the most important days of their lives. I sat in frozen horror and Danielle, naked but for her panties and t-shirt, covered in sand, joined the wedding party and took "her" seat in the front row next to the mother of the bride.
  By the way, the guards at Buckingham Palace have nothing on the Marine Corp Honor Guard. They never once broke concentration as this little half naked black girl ran under their swords and up the aisle. When I crawled to the back of the aisle and stayed there on my hands and knees trying to get her attention and urge her to come back, they never even flinched. It was as if we were completely invisible. Tremendous discipline...
  As I knelt at the back of the aisle trying to figure out what to do, Danielle slowly turned back and gave me a playful smile. I am so angry, frustrated and worried that I'm about to have stroke. By now, the guest at the wedding are finding this quite amusing, at least some of them were. The bride and her dad seemed to be completely oblivious to what was going on. To my further dismay, there were several video cameras watching Danielle's antics and I was afraid she was going to make a mockery of this couple's wedding. I was at my wits end.
  There was this beautiful little flower girl about Danielle's age standing next to the bride. She was keenly aware of Danielle's presence and glanced over her shoulder several times to see what was happening. Eventually, she saw me at the back of the aisle. She obviously could see the look of sheer panic on my face and decided to help me out. She gently and quietly put down her flower basket, walked over and took Danielle by the hand and walked her back down the aisle to me. I was so grateful to her but there was no time to say thank you. It was time to get lost as fast as possible.
  I've often thought about what the bride and groom must have said when they saw the wedding video. "Who is that naked kid and where did she come from?". I've also thought about the irony in the way this ended. A child of Danielle's age was able to quickly determine what was going on and come to our aid. Meanwhile, Danielle had no idea what she was doing wrong.
  I'm truly thankful because this had the potential to be so much worse...for the bride and groom!

What Are The Real Cost of Reform? Part 2

Whenever there is a discussion about education reform in California the focus is often on the teacher's union, the lack of adequate funding from our legislature and teacher/student ratios. These are perfectly legitimate, very serious concerns and each one must be addressed in order to insure our ability to properly educate our children.
  However, there is a major component to the public school education process that is rarely discussed; it's the elephant in the room. No matter what happens with teacher tenure, incentives or pay increases; no matter how much more funding our public schools receive, without more parental participation large numbers of our children will continue to underachieve and dropout of school.
  Parents play a critical role in the education of children. Parental guidance, encouragement and support are essential in establishing education as a priority in the lives of children.  While public schools have a mandate to educate every child, they are ill equipped to do so. Bill Gates, Former CEO at Microsoft said, "we are attempting to educate in the 21st Century with a 1954 model." Increasing enrollment, ethnic and cultural diversity, increasing numbers of students with learning and developmental disabilities, outdated teaching methodologies and a lack of resources are all challenges that can devastate and overwhelm public school systems. The one major, untapped resource left to our communities are parents.
  The fact is our schools offer educational materials and guidance but parents can't drop off their kids and say, "teach Johnny to read" and expect they have no responsibility to assist in the process. As an advocate that works for families, I often meet parents who are two income household. Recently, I met with a couple who were having trouble with their school speech therapist. Their complaint was the "total" lack of progress shown by their son during the past school year. Their son receives 1.5 hours of speech each week. Of that time, .5 hours is one to one and 1.0 hours is shared. The child that shares the hour of speech therapy with their son has shown great progress and their son had not.
  Every child is different however we decided to meet with the parents of the other child to see if they could provide us with any insight. What was immediately clear is the other parents had a strategy in place to support their child's learning experience. Once every two weeks, one of the parents would talk with the therapist and get tips on techniques and exercises they could do in between the speech therapy sessions. In essence, they were providing as much "therapy" as they could in support of the therapist. This dual, supportive approach was critical to the progress of their son.
  My clients felt their situation was different.  Both parents work long hours and have little time to spend on "activities" after coming home. In their mind, the school is supposed to teach their child to speak and they were doing a terrible job. I suggested that we try and get more speech therapy hours provided by the school. I also suggested that the family look at other ways to supplement the efforts and services that they are currently receiving. If you can't take time off to assist with the development and education of your child, ask a family member, hire a tutor, down size, re-assess your priorities. The point is parents need to be more responsible for the education of their children. 
  According to the California Department of Education, the high school graduation rate for this state in 2007-2008 was 68%. State wide, the high school drop out rate is 20.3%. If you think about the fact that we are in the 21st Century, the age of technology and only 68% of students in our state are meeting the minimum standards to exit high school it's pretty astonishing. This problem can't be left up to our schools alone, parents must be part of the solution.
  Yes, we need to reform our education system. We need reform within the teachers union and with our legislative priorities. But reform begins at home.

Chapter 18: THE CROSSROADS

From My Journal, June 2004


I came home about 9:30pm last Thursday and found the house completely dark. I felt something was wrong because Kathy always leaves a light on downstairs for me when I come home late. But, 9pm isn't that late for me. I walked into the living room and reached for the light and there were huge pieces of thick glass all over the carpet. It was obvious that the last of our two huge decorative vases that sat near the mantle had been smashed and I was sure I knew who was responsible. What I didn't understand was why no one picked up the glass or why the lights were out. Leaving shards of glass on the floor is dangerous enough, but leaving glass and turning out the lights? I was more than a bit annoyed. I left the house at 5:30am and I didn't leave the Theater until 9:00pm. I'd been at work for 15 hours and this is what I come home to?

I started upstairs and I could hear someone crying. As I reached the top of the stairs, I realized the crying was not coming from the kids room, it was coming from the master bedroom. When I entered the room, I found Kathy sitting on the bed sobbing. When I asked her what was wrong, she took a deep breath and a very long pause. She said, "I can't do this anymore. I can't raise this child. We have to find a place to put her, somewhere where we know they'll take good care of her. I have thought about this and I just can't do this anymore."

In normal situations, a person would recognize this as a cry for help or perhaps just the need for a sympathetic shoulder to cry on. But, our situation is far from normal. You see, I've been with Danielle on one of those days. I know what it can be like and it is not easy. You can never truly relax with Danielle, at least not mentally. You can sit for short periods of time but you cannot afford to get engrossed in any activity; not TV, homework, house cleaning, nothing. The moment your concentration wanders from Danielle for more than 10 minutes, disaster is on the horizon. It is hard to understand the emotional stress of being mentally on task and physically ready to respond to emergencies at a moment notice. I know what this is like so I should have known better.

Kathy began to tell me about her day. Danielle got up about 7am and before Kathy knew it, she had gone to the refrigerator and took out six eggs to "cook" for breakfast. When Kathy went into the kitchen, she found Danielle stirring the broken eggs in the bowl, along with all the shells. When Kathy took the bowl from Danielle, she had a mini-tantrum and went upstairs. After Kathy cleaned up the mess in the kitchen, she went upstairs and Danielle had poured baby powder all over herself and all over the master bedroom. After cleaning up that mess, she went downstairs and gave Danielle some cereal for breakfast. As soon as she turned to walk away, Danielle stood up and started spinning with her bowl and threw milk and cereal all around the dining room. This pattern of behavior, crisis response and crisis management went on all day long. Finally, at the end of a very long day, Kathy put Danielle in the bath tub. She stayed in the bath room with her, as we usually do. After fifteen minutes, Danielle didn't want to get out of the tub so Kathy thought it would be okay to leave her alone for a few minutes. Kathy called her mother and while she was on the phone, Danielle got out of the bath tub and used the restroom. Unfortunately, she also cleaned herself with an entire roll of toilet tissue. When she flushed the toilet, it overflowed. The toilet was over flowing for 3 or 4 minutes before Kathy realized what was going on. Water from the overflowing toilet got into the floor vents and began to seep through the downstairs ceiling. Eventually, water was leaking through the light fixtures in our downstairs dining room. Kathy ran upstairs to handle the flood and try to minimize the damage. In her haste to stop the water and shut off the fuses in the fuse box, she lost track of Danielle. As she was throwing down towels to soak up the water and trying to figure out why the toilet overflowed, she heard a huge crash downstairs. Danielle had smashed the last of our twin set of Chinese vases. It was at that moment that Kathy reached her breaking point. However, it wasn't just today, it wasn't just this fifteen hours when I was gone. It was all of the past fifteen hour days, it was all of the fifteen hour days she saw in looming her future.

I don't know why I reacted the way I did. Perhaps it was just a defense mechanism, I'm not sure. My first thoughts were not about Kathy, though they should have been. Perhaps it was my deep understanding of what she was feeling. I've had those feelings before but I just put them out of my mind and press forward. Kathy's situation is much different than mine. While I may experience this hailstorm once or twice a week on my days off, Kathy is with Danielle for days on end. It's not unreasonable to think that she really has reached her limit.

My first thoughts were of what the reality of what Kathy was telling me would "look like". If we were to seriously consider what she is saying, how would this happen? We start looking for local residential facilities that take little girls? Do we go and visit her after work for an hour or two and come back on weekends? What do we tell Taylor; mommy and daddy thought it was best if Danielle go away? How could I walk into her bedroom at night and look at her empty bed, knowing she was in someone else's care? I knew I couldn't do that and continue on with my life as if nothing happened. I absolutely could not consider such a thing. I would sooner walk away from my career than give up my daughter. Danielle wasn't an "accidental" child. We wanted another baby and we planned for her. We had no idea that she would have special needs but it is what it is; she is who she is. I would sooner give up my right arm than give up my daughter. Danielle did not ask to be here and she certainly did not ask for her disability. We wanted a child, we have her and she is beautiful. I would sooner give up my marriage than give up my daughter. Is that what this has come to? Do I have to choose between my marriage and my daughter? Is this where we decide that our family is no more? I never understood the depths of my commitment to Danielle's well being until that moment. No wonder divorce rates amongst families like ours is so high. We are at a crossroads in our lives and the lives of our children.

In hindsight, I realize my thought processes were completely haywire, nonsensical. Kathy was simply exhausted and temporarily overwhelmed. She couldn't possibly consider institutionalizing Danielle, no more than I could. She needed to "decompress" and vent her emotions and frustrations. Since that time, Kathy and I have talked about what transpired and how we can better support each other through these tough days and moments of weakness. It is far from perfect but we are making our way. In the future, there will be many more crossroads for us to navigate. Hopefully, we are both looking at the big picture and the horizon when we decide which road is best.

What Are The Real Cost of Reform?

Several years ago I met a person who, after two years of legal wrangling, won a judgement against the local school district. He and his wife were going to have their child sent to a non-pubic school and the cost would be paid by the public school district. In addition to the tuition which was $60,000.00 annually, the school would also have to pay the cost of transportation which was an additional $125.00 per week. That's a lot of money.
  At this same time, there was a group of parents attempting to file a class action lawsuit against the Morgan Hill Unified School District. About two or three parents got together and started trying to recruit others to join in their complaint. They had an attorney and they were "passing the hat" to pay his retainer. I can't really recall what the complaint was about but I know I didn't want to be part of it. The problem with lawsuits is the courts have no sense of urgency and all of our issues are time sensitive. You can start legal proceedings for your fifth grader and by the time you get to court he/she is about to enter the eighth grade. You're much better off going to the Department of Education and filing your complaint there.
  I started thinking, if this one parent won a judgement and the cost to the school district is almost $65,000.00 annually, what happens if a big class action suit with several parents resulted in a judgement against the school district? We all know where that money comes from; that's our kids art, P.E.and  music classes. The school districts don't have a "slush fund" for law suits so it has to come from the general fund, right? People don't think about this but it has a huge affect on our school budgets. Special Education Litigation is one of the fastest growing practices in the field of law...Makes sense, autism is the fastest growing disability facing our educational system. So, what's the cost to our public schools in California? It's a good question and one I have yet to find an answer to.
  Two years ago, I went to a workshop and one of the speakers was an attorney from a law office on the peninsula. She was introduced as a leading expert in the "emerging" field of Special Education Law.  Her law firm had billed the Ravenswood School District $2.1 million dollars for services rendered over the past fiscal year. First of all, I wouldn't have bragged on that fact. Secondly, $2.1 million is what was billed to the school district. They didn't mention what the district suffered in losses.
  How many school districts are there in the state of California? If that is what one school district paid in one year, what would the total cost be to our education system state wide? A hundred million? A billion? $2 billion?  Believe it or not, no one knows what the annual cost of litigation to our educational system might be.
  I started asking this question two years ago and I still don't have an answer. I've talked with three members of our state assembly, more than once I might add. I've talked with my state congress person, I've written the California Department of Education. I've written the State Superintendent of Schools. I've written the Governator. I've written the Santa Clara County Office of Education. I've written the County SELPAs. No one knows and no one even keeps track of this information. I don't think anyone wants to know the answer to this question. How can we talk about educational reform when we are not tracking information that has such a huge impact on our bottom line? It's like spending ten billion dollars a month and not including it in your budget...oops!
  I've heard the cries from the GOP for the teachers union to give more concessions. However, there are to many holes in the boat to believe that the key to the problems facing our schools is just concessions from the teacher's union.
  This might anger a few people but it's the Socialist in me; If everyone in the state of California paid an extra $200.00 per year in taxes we wouldn't have a shortage of teachers, equipment, resources or transportation in our public schools...That includes the CSU and UC Systems.

Chapter 17: Siblings Without The Rivalry

One of the major challenges that families like ours face are the concerns of the sibling(s). With so much time and effort devoted to helping your disabled child, how do you insure that your other children are getting their needs met? Between therapist, doctors, clinicians, play groups, it is easy to neglect your other child(ren), especially if they are the low maintenance type of kid.

Autism is really a family disability. While an individual may have autism, it is impossible for the rest of the family to avoid its ripple effect; like dropping a pebble in the water. Unlike other disabilities, autism is usually accompanied with a fair amount of hope. Cruel as it can be, hope is the catalyst for much of the pressure that families experience. Hope comes in the form of new therapies, diets and "cures". If you child has Downes Syndrome or another disability, you may have an idea what his or her abilities or limitations may be. You can plan for the future when you have an idea what to expect. Not so with autism. For many people autism offers hope; hope that Jenny McCarthy is right. Hope that the intervention strategies you've been practicing for years will suddenly produce unbelievable results. In turn, these hopes and dreams can become all consuming. "Chasing the cure" can divert your attention from important things that cannot be and should not be ignored; your spouse, your job, yourself and your other children.

We have been very fortunate in terms of our children. Taylor is 13 years old and a wonderful, empathic young lady. She is the ultimate big sister, I could not have picked a better a sibling for Danielle. It hasn't always been easy to keep that balance. We realized that, in many ways, we could not be the "typical" family. There were times when we had to acknowledge our unconventional needs and do what was necessary to insure that both Taylor and Danielle's needs were being met. With "typical" families the mantra is, "United We Stand, Divided We Fall". Our family is just the opposite. We often have to split up in order to provide the experiences and meet the needs of both children. There are activities that Taylor throughly enjoys that are completely unbearable for Danielle.

When Danielle was very young, she was adaptable to most any situation. One of Taylor's favorite summer activities is going to California's Great America Theme Park. On many ocassions, we spent the day at the theme park, walking amongst the thousands of other attendees. The sounds of people screaming, roller coasters whirling by, piped in music, people in costume, giant mascots and marching bands are enough to upset anyone, especially a person with autism. However, Danielle was a trouper, these things seemed to have no adverse affects whatsoever on her. Every year, we purchased our "Family Passes" to Great America and to the Monterey Bay Aquarium, Danielle's favorite place to go. Many of the stereotypes that were attributed to children with autism didn't apply in Danielle's case. Kathy and me had several conversations about how fortunate we were that Danielle didn't have the social problems that "other" kids have.

Somewhere around spring of 2005, that all changed. The change was sudden and it caught us completely off guard. I was on my way with Taylor and Danielle to purchase our season/family passes for Great America when I noticed the Danielle seemed to be very uncomfortable. She was wiggling around in her car seat and the expression on her face was somewhere between a frown and a grimace. I asked Taylor to see if she could figure out what was wrong. (Taylor's great at that.) There was nothing physical wrong that we could tell, I thought she might have a stomach ache. I told Danielle to hang on and we'd pull off of the freeway at the next exit. It just so happened, we were at the exit to Great America. What a coincidence, or so I thought. As we got closer to the theme park, Danielle became more and more agitated. Soon, I began to pannick because she was apparently in great pain. When we reached the front gate to the parking lot, Danielle was screaming at the top of her lungs and seemed to be writhing in what I assumed were cramps and pain. I immediately asked for the location of their first aid office and asked that someone call 911. When we reached the front gate, we were met by first aid personnel and they told us the fire department was on their way. As I attempted to take Danielle from the truck, she grabbed on to the car seat and wouldn't let go. This was so unlike Danielle, did she eat or ingest something that I don't know about? The harder I tried to get her from the car and into the hands of the first aid staff, the more she fought me. I looked at the first aid staff and they obviously had no clue what was happening. I began to hear sirens in the distance and so did Danielle. As the sirens got louder, Danielle's screams took on another tone, more of a pleading tone than the painful wails we heard earlier. It soon hit me, it was the park. The sound of roller coasters, the screams of the people, music, the automobile traffic; it was the "energy". Danielle was reacting to the energy being generated from the park and its' patrons. The approaching sirens were not helping the situation at all. I immediately closed the door and jump back in the drivers seat and told the first aid people I couldn't wait, "apologize to the fire department and tell them thanks". I was out of that parking lot as fast as I could safely go. As we moved farther away from the park, Danielle began to calm down. When we were about two miles away, Danielle completely stopped crying and almost immediately, fell asleep.

I don't know who was more traumatized, me or Danielle. Oh, did I forget Taylor? After all, California's Great America is Taylor's favorite summer hang out. We were on our way to purchase family passes and now were driving as fast as we could to get away from the park? All because Danielle had a fit?

Over the following weeks, this same scenario played out at the Monterey Bay Aquarium, the Santa Cruz Beach Board Walk and Gilroy Gardens Theme Park. We understood right away that it was critical that Taylor not be deprived of these experiences and that concessions had to be made. There wouldn't be anymore family passes to our favorite places. From now on, there will only be two passes purchased for each venue; one for Taylor and one for mom. On the occasion when Taylor wants to go for a day the her favorite park, Danielle and dad will find other activities to occupy our time. It has worked out fairly well for us, so far. On our trips to Monterey, we drop Taylor and mom off at the Aquarium and Danielle and dad go down to the beach. It's not the ideal situation but I know that both girls are enjoying themselves and that is what's important. As you might imagine, not recognizing or acknowledging the need for such changes could lead to some real animosity between siblings. So, it's "United We Fall, Divided We Stand."


How do you raise siblings without rivalry? I have no idea, especially in big families. I can, however, tell you what I believe to be absolutely true. I raise my daughters with the expectation that they will love and care for each other. That may sound simple but I don't know that it is all that common a practice. Many people raise their children with the assumption that they will love and care for their sibling and there is a difference.

The assumption that siblings will love each other because they share the same parents is pretty common. It is assumption that I wouldn't make. From the day we knew Kathy was pregnant with Danielle, we told Taylor what an awesome responsibility "she" was undertaking. After all, being a good big sister takes work and we were proud that she was up to the task. The day after Danielle was born, I took Taylor to meet her sister for the first time. Taylor was just weeks away from her third birthday. As Taylor looked at her new baby sister, I told her why we wanted another child. I told Taylor that we thought it was important that she have someone else in her life. Someone who she could grow up with and someone she would always be connected to besides mom and dad. We wanted her to have a friend for life. That was how I introduced Taylor to her new sister.

We have involved Taylor in all aspects of Danielle's life. This was before we knew of Danielle's autism. I believe that this was a crucial ingredient to their relationship. Soon after Danielle's diagnosis was confirmed, I understood how fortunate I was to have laid the foundation for their relationship from day one; the expressed, acknowledged expectation that this is your sibling and that bond is not to be broken. So, Taylor doesn't see this as something she has to do because of Danielle's disability. She understands that this is the way we live, period.

Taylor has benefited so much from Danielle and vise versa. Taylor is a guardian, teacher, mentor and spokesperson for Danielle. Danielle is a friend and apprentice to her big sister. Where one goes, the other is not far behind. Taylor has taken it upon herself to include Danielle in activities with her friends, whenever appropriate. Whether it's swimming, riding scooters, taking walks or playing in the park, Taylor is a trustworthy and attentive big sister. It is a wonderful thing to witness and it makes for some nice afternoon breaks for me and mom as well.

I can't possibly take all of the credit for Taylor's responsible nature. I've talked with others who've tried to include siblings in their activities and it hasn't been nearly as successful. Taylor seemed to have had a certain innate mature "streak". Perhaps some people are born with it, like a character trait. Perhaps we all have it but it just needs to be nurtured.

By the way, a friend asked me about my "energy" theory. It's not a theory, it is fact. My daughter feels energy level of people and locations. The intense energy that some crowds release is to much for Dani to handle and she becomes overwhelmed. For example, we can walk through a large shopping mall with thousands of people, shoulder to shoulder and Danielle has no problem at all. However, come within two miles of an amusement park and she will start to throw a fit. Anyone who knows Danielle will acknowledge that she is not subject to tantrums or fits. It's not about noise and it's not about crowds at all. It is about the energy that people exude. She only displays this type of behavior when she is in or near areas where the excitement level of the crowd  is very high.