The Prodigy's Cousin (13 page)

Today, such engrossing interests are one of autism's hallmarks. The
DSM-5
lists “
highly restricted, fixated interests that are abnormal in intensity or focus” as one of the condition's core symptoms.
Many autists demonstrate such circumscribed interests, and trains, physics, video games, and numbers are among the most common.

It's a startlingly similar sort of obsession that propels child prodigies to relentlessly pursue their crafts. As a child, Lauren Voiers colored on the wallpaper, drew on the carpet, and carved into woodwork; as a teenager, she stayed up late into the night, painting. Greg Grossman requested specialty food items as gifts, wrote about food for school projects, and dragged his mom to food trade shows. He cooked at home, he cooked at friends' houses; he hounded the chefs in his school cafeteria. William calculated every chance he got: he calculated dates and ages, swapped math problems with his uncle, and wrote out the powers of two for fun.

Several researchers have observed that autists are highly motivated to pursue their obsessions and that they view time so spent positively; they find their chosen activity fulfilling, and it makes them happy. This, too, is a characteristic shared with the prodigies. Each of them, beginning with Garrett James, who, even at four years old, took the stage with complete confidence and contentment, has a similarly positive take on his or her field. For them, playing the piano, painting, or engaging with complex equations isn't drudgery; it lights them up.

There are differences between the interests of the autists and those of the prodigies. While the prodigies tend to excel in culturally recognized domains—areas like music, art, and math—
the autists' interests can lie in any area, ranging from traditional fields like music and math to more esoteric subjects like Pokémon and models of lawn sprinklers.
From the autist's family's perspective, the choice of specialty may be no small matter; a dedication to music has a more straightforward vocational trajectory than a passion for Pokémon. Autists' families, just like prodigies' families, often appreciate their children's interests, though some also note that these interests can be disruptive to family life.

But in terms of what lies beneath those interests, and the extraordinary ability of prodigies and autists to single-mindedly pursue their passions, the division between laudable focus and unhealthy obsession seems a thin, fragile line.

By the end of 2011, Joanne had investigated nine prodigies. It wasn't much of a research sample by typical scientific standards, but for a prodigy study it was a strikingly large group. At that point,
Joanne took stock of what she had seen so far.

Every prodigy she had met had an astounding working memory—a trait the prodigies share with autistic savants. Each of the prodigies had an unquenchable passion for his or her field, a trait similar to autists' tendency toward obsession. But those traits were only the beginning of the connection between prodigy and autism.

Autism is highly prevalent in the prodigies' families. Five of the first nine prodigies Joanne worked with had at least one close family member with autism. Three of the families combined to have eleven close autistic relatives, and one prodigy had five family members with an autism spectrum disorder. When these children look around at their relatives, it can seem that autism is everywhere.

Autism is more common among men than women, with boys landing on the spectrum about four times as often as girls.
The reasons for this asymmetry are a bit murky, but some recent studies have investigated the possibility that higher levels of exposure to testosterone during pregnancy leave boys more vulnerable to developing autism. According to this theory, the elevation in testosterone leads to a dip in social skills, language development, and empathy but a spike in systemizing—traits that align with the symptoms of autism. The leading autism researcher Simon Baron-Cohen has thus suggested that autism is a manifestation of the “
extreme male brain.”
Others have proposed that something
protects
females from autism and that females require a higher number of autism-linked genetic mutations to
develop autism.
Still others suggest that autism may look different in females and so females end up underdiagnosed.

Though her sample was small, Joanne saw this same gender skew in her initial population of prodigies: with seven boys and two girls, the breakdown was 3.5 boys to every girl, a ratio nearly identical to that for autism. It was another clue that underneath their surface differences, the two might have common biological roots.

Attention to detail is another link between prodigy and autism. This characteristic, the ability to notice and remember small things that others ignore or forget, has been described as “
a universal feature of the autistic brain.”
Heightened attention to what the non-autistic brain dismisses as minutiae is thought to help those with autism excel at detail-oriented tasks, like identifying items or figures hidden in a larger design.

In one highly publicized 1996 incident, army rangers, Green Berets, marines, sheriff's deputies, and a host of other volunteers spent four days scouring the murky waters of a Florida swamp, searching for Taylor Touchstone, an autistic ten-year-old boy who had ventured out of sight while swimming. So treacherous was the swamp into which the boy had nonchalantly ventured that it had claimed the lives of four army rangers the previous year. On the fourth day of the search, a man fishing for bass found Taylor floating naked in a river, bloody and scratched but otherwise unharmed, fourteen miles from the spot where he disappeared.

Taylor's family believed his autism saved his life. Because Taylor often focused on tiny details, such as the knot in his bathing suit string, he traveled without panicking through a swamp teeming with alligators and poisonous snakes.

Autistic savants share this trait and sometimes put it to spectacular use. The artist Stephen Wiltshire, for example, has astounding attention to detail. When he was eleven, Stephen visited London's St. Pancras railway station, an intricate structure dripping with dormers, windows, and balconies, during a school trip.
Afterward, Stephen reproduced it
with startling accuracy.
On other occasions, he has produced massive, astonishingly detailed, “frighteningly right” cityscapes after a short helicopter ride over a city.

Extreme attention to detail is also mirrored in the prodigies. The pilot study that Joanne conducted after meeting Garrett James revealed the prodigies' family members' elevated attention to detail. She administered the AQ (the same test she had used in that pilot study) to eight of the nine prodigies in her initial sample and found that the prodigies, too, demonstrated excellent attention to detail.
They outscored those without any sort of autism diagnosis and even exhibited a greater attention to detail than those with Asperger's disorder.
Jonathan Russell, for example, is so attuned to sound that he notices the pitch of car horns; when he rides the New York subway, he finds it jarring when the chimes on the cars are a half step off.

The prodigies' lives were rife with tantalizing hints that their precocious abilities were somehow linked to autism. If anyone embodied that increasingly robust connection, it was the ninth prodigy Joanne met: Jacob Barnett.

Kristine Barnett's first pregnancy was a nightmare. The petite, fresh-faced blonde, then just twenty-four, developed preeclampsia, a pregnancy complication associated with high blood pressure. Her bouts of preterm labor forced her into bed rest. She took multiple emergency trips to the hospital. Three weeks before her due date, Kristine went into labor again; this time, her son, Jacob, was born.

Kristine and her husband, Michael, a quick-witted man who speaks in rapid bursts of words, brought Jacob back to their home in suburban Indianapolis. Less than a week after giving birth, Kristine returned to work at her in-home day care. She brought Jacob along with her.

With Jacob almost always by her side, Kristine had a front-row seat for his “firsts,” a series of milestones that ripped past her. He said his first word, “ragù,” at just three months old while Kristine was making spaghetti. Once his lips formed the word, he repeated it over and over again. “He was going absolutely crazy with spaghetti sauce,” Kristine said. “I think my reaction was, he's really into this spaghetti sauce. Everybody look at this, this is insane. This kid really likes spaghetti.”

He loved puzzles. Before he was a year old, he would take a dozen or so of the Peg-Board puzzles Kristine had at the day care—animal puzzles, truck puzzles, any other type of puzzle he could get his hands on—and dump all the pieces into a pile. He would pick up a piece and sift through all the puzzles until he found its place. He always knew which puzzle to look for; he always oriented the piece
so that it slid right into place. He would keep going until he finished all twelve puzzles.

Kristine and Michael got a glimpse of Jacob's memory during a trip to a furniture store. Michael and Jacob hung out in a waiting room stocked with books and toys while Kristine picked out a couch. Jacob gravitated toward the puzzles and plowed through one with alphabet letters. When Kristine returned, he recited the alphabet forward and backward. Kristine assumed he was just reading the letters in front of him. But even after they left the store, he kept saying the alphabet—forward and backward.

Around the time Jacob was six months old, he began memorizing shows, Baby Einstein videos, and movies—whatever he saw on TV. When Kristine was in the kitchen, Jacob provided running commentary from cooking programs. Dice this, he would say, or sauté that; chop those carrots.

At almost a year, Jacob homed in on a computer in the day care. He fished CD-ROMs out of a small basket, and using the arm of the couch to pull himself up, he inserted them into the computer. The programs recited books like
The Cat in the Hat
and
Horton Hears a Who!
while displaying the words on the screen. Jacob watched attentively. He burned through all the CDs at the day care. “He just went nuts with it,” Kristine recalled. “Nobody else could touch it.”

Jacob wanted—almost needed—to immerse himself in the worlds the books created. He demanded toy versions of the characters from
The Cat in the Hat;
he insisted on eating green eggs and ham; after he read
One Fish Two Fish Red Fish Blue Fish,
the family had to get a goldfish.

By the time Jacob was one, he could read short words. Not sound them out—
read
. He had spent so much time with his books and CD-ROMs, he knew the words by sight.

Jacob looked like a typical toddler. He had an inquisitive face, round cheeks, and light brown hair. He did typical toddler stuff, too.
He loved stuffed animals; he wrestled with his father. The day-care kids dressed him up and played patty-cake with him.

But even though he was actually far from typical, his family took even his most advanced abilities in stride, at least most of the time. Kristine had also spoken early, and by ten months old she could identify every plant in the local garden shop—the lipstick plants, the spider plants, the philodendrons. “When Jake came along, he did crazy stuff, but Kristine had done crazy stuff before,” Kristine's mother, Becky Pearson, said of her daughter's and grandson's rapid development. “So we just kind of took him for what he was.”

Around the time Jacob was fourteen months old, there were changes—small ones at first. He developed chronic ear infections. He didn't want to wrestle with Michael anymore. The sound of his talking and laughing, joyful noises that had once filled the house, became rare.

His early interest in letters and a similar interest in light, once charming, grew insatiable. They began to pull at him, sucking him into an isolating world. He carried his alphabet magnets with him everywhere. He stared at light on the wall, light on the water, and light on an apple; he used his hand to make shadows for hours at a time. At the day care, Jacob stopped chasing the other kids. He took a book or a stuffed animal and a flashlight and climbed into tightly enclosed spaces. If Kristine tried to pull him out, he cried.

A specialist confirmed that Jacob had significant developmental delays. He started seeing a speech therapist and then a developmental therapist. But instead of getting better, Jacob withdrew further. He stopped saying good night; he stopped saying “Mommy” and “Daddy.” Soon the child who had said his first word at just three months old could only repeat memorized phrases like a lyric from a song or something he had heard someone else say. Physical contact repulsed him. If Kristine put him on her lap facing her, he would flip over and strain away from her to avoid eye contact.

Jacob was examined again a few months after he turned two. He
recited the alphabet forward and backward and zipped through a puzzle, but he didn't respond to the evaluator or make eye contact. He refused to point at a circle, stack rings, or sing.

Kristine's great fear was an autism diagnosis. At the time, her impression of autism was heavily influenced by Dustin Hoffman's portrayal of an autistic savant in
Rain Man
. Kristine couldn't see her son in the same category as the character from the movie.

Jacob was instead diagnosed with Asperger's disorder. At first, that term, which sounded distinct from autism, brought Kristine a great sense of relief. It took a while for her to accept that autism and Asperger's weren't wholly unrelated diagnoses.

It hardly mattered, though. Jacob withdrew further. He stopped speaking altogether. He refused to eat anything except plain foods; if there were no pancakes for breakfast, he melted down. Spinning objects fascinated Jacob, and he watched them with frightening intensity. He developed an obsession with his alphabet flash cards, and he carried them everywhere. He loved to stuff himself into small spaces; Kristine sometimes found him at the bottom of the closet, on a shelf in the armoire, in plastic storage tubs, or in a laundry basket. When Jacob was reevaluated just before his third birthday, his diagnosis was revised again, this time to full-blown moderate to severe autism.

From the professionals, the Barnetts received a clear message about next steps: if they wanted to help their son, they had to get in as much therapy as they could as quickly as possible. Jacob did speech therapy, occupational therapy, physical therapy, and developmental therapy. They tried out a traditional behavioral therapy program and then switched to a more child-driven approach. Jacob spent hours stacking rings on a stick or trying to drop a ball in a cup. He practiced facial expressions and sounds, worked on holding a pencil, and tried to take the stairs one leg at a time.

The therapy continued even when Kristine and Michael's second son, Wes, was born and began having health problems of his own.
Wes was having seizures and couldn't swallow fluids; he often seemed to be in pain. The family took multiple trips to the emergency room with him, and more than once they feared for his life. Still, Jacob had therapy before the day care opened, therapy during the day, and then more therapy at night. When Jacob went to sleep, Kristine and Michael researched autism therapies and support groups. Every night, Kristine got in the shower and cried.

Months went by without Jacob's speaking. “It didn't matter how much therapy we were doing. If there was a rainbow, he was losing colors every month,” Kristine said. “It wasn't working.”

Jacob was listless and bored during therapy, but afterward he did the things he enjoyed. He spun balls. He drew shapes. He strung yarn through the kitchen, creating colorful, intricate webs. He studied the angles of light and shadows. He could tell the time—precisely—by the shadows on the walls. He wasn't talking, but sometimes he communicated through light. If Kristine was sad, he would take a faceted glass, angle it so it caught the light, splash a rainbow across the room to comfort her, and then run away.

The summer Jacob was three, there was a break in his state-provided therapy. One of the programs ended on his third birthday; it wouldn't pick back up until the fall, when Jacob would start special-ed preschool.

At the time, a lapse in therapy was unthinkable. Michael and Kristine filled in themselves, putting their own twist on the activities. Kristine created a mesh sling that Jacob could climb in to achieve the smooshed feeling that made him comfortable; he did parts of his therapy from inside. She poured thousands of dried beans into a wooden play table and let Jacob burrow in them; from there, she coaxed him into working on social goals. Kristine tried PECS, the picture-based communication system Lucie had used with Alex, and it worked. Within a few weeks, Jacob could point to the cards.

One day that summer, after watching the day-care kids laugh and play in the sprinklers, Kristine realized that for all their innovations
with therapy, many of which Jacob enjoyed, that was all it was—therapy. His day was packed with it. Her three-year-old son was missing out on the exuberance of childhood. He wasn't having any fun. “He's my son. He's this beautiful child, and he deserves a childhood as much as anybody else does,” Kristine remembered thinking.

Kristine made a course correction. They kept at Jacob's therapy during the day, but in the evenings they backed off. At night, Kristine drove Jacob out into the countryside, and they played jazz music and danced. They looked at the stars and ate Popsicles. They made s'mores or drove out to her grandfather's land. During the day, between therapy sessions, Kristine dragged Jacob outside and blew dandelions at him or turned on the sprinkler.

One night, a few months after they began their nighttime adventures, Kristine tucked Jacob in. She said a few words to him, the same soothing mantra that she repeated every night: “Good night, my baby angel. You're my baby angel, and I love you.” For the first time in over a year, Jacob hugged her back. Then he spoke: “
Night-night, baby bagel.” Even now, Kristine cries when she remembers the sound of his words after so many months of silence.

That fall, Jacob began special-ed preschool.

To Kristine, it never felt right. She had spent the summer trying to give Jacob a taste of carefree childhood, something closer to ice cream and swimming pools than to task repetition, and now he had to start school earlier than other kids. But school was where Jacob got his therapy, and he certainly seemed to need it. After repeating Kristine's good night words back to her, he had begun speaking occasionally, but he still couldn't engage in conversation. So every morning, Jacob got on the bus.

A couple of months into the school year, one of Jacob's teachers came to the Barnetts' house for a conference. She brought up the alphabet cards Jacob carried to school every day. The cards were special to Jacob:
He kept them in his pockets, pants, and shoes. He stashed them around the house and got upset if anyone touched them. To Jacob, the cards were more than a learning tool; they were dear friends. But the teacher was concerned that Kristine and Michael needed to adjust their expectations. Jacob's education was geared toward life skills: helping him learn to dress himself, tie his shoes, eat with a spoon, and stay in his chair. Learning the alphabet wasn't on the agenda. Neither was learning to read.

That night, after the teacher left, Kristine checked on Jacob. As usual, his alphabet cards were everywhere, spilled across his puppy-and-pickup-truck comforter. She put her hand on his back and thought about all the things she had seen him do before his autism diagnosis—she thought about him reciting the alphabet and studying
The Cat in the Hat
on the computer—activities he loved. “I thought, well, they just have all given up on you, Jacob, but I haven't,” Kristine said.

The next day, the school bus came and went. Jacob didn't get on it. Kristine didn't intend for him ever to get on that bus again.

There was paperwork to withdraw Jacob from school. The administrators emphasized that they didn't recommend taking Jacob out of school. They urged Kristine to talk to a doctor. At least send him for his therapy, they pleaded. But Kristine refused to send him for even that portion of the day; she felt that his self-esteem was at stake. “I didn't want him to feel like everybody has given up on him. I didn't want him to feel that; I didn't want him to know that,” Kristine said. “And he would know. He would
know
.”