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.
Chapter 6
Chromosome 1
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 everywher
e. 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.”
Once Kristine had Jacob home again, she had to figure out what to do with him. She decided to help him focus on his interests—even if she didn’t understand them. As Kristine once said during a TV interview, “Some of these things that he liked to do were considered repetitive behaviors. So he would, you know, he would play with a glass and just look at the light, twisting it for hours on end, and instead of taking that away, I would give him 50 glasses filled all different levels and let him explore.”
Jacob learned about chess and was soon beating adults. He studied shapes. He taught himself Braille. He was intrigued by planets and particularly fixated on Pluto’s distance from the sun. During trips to the library, Jacob sought out books about space. If those books represented Pluto as closer to the sun than it should be, he would rip the picture of Pluto out of the book and move it farther away.
On a trip to Barnes & Noble, a three-year-old Jacob discovered an astronomy textbook on the floor. He looked through it, drinking in the minuscule text and the maps of the solar system for more than an hour. He refused to leave without it. The book seemed far too advanced for him, but it was on sale, and Kristine bought it. Jacob couldn’t get enough of it. He brought it with him everywhere, dragging the large tome around by its cover.
When the Butler University planetarium put on a special program on Mars, Kristine took Jacob to see it. During the presentation, the lecturer asked if anyone knew why the moons around Mars are elliptical. Kristine was shocked when Jacob responded with a question about the size of the moons and then answered the lecturer’s original question: he said that because the moons were small with a small ma
ss, their gravity was too weak to round them into spheres. As Kristine remembers, it was more conversation than she had ever heard from Jacob. “Then I knew, okay, he doesn’t just know the information; he’s able to understand the information, and he really knows how it all works together and what it means,” Kristine said, “on this really crazy, crazy level for a three-year-old.”
Jacob’s interests engaged him in a way that nothing else did. The more time Jacob spent learning about astronomy, the more he interacted with those around him. Diving deep into one of his powerful, narrow interests—a classic autism symptom—eased his isolation. Kristine and Michael let him dive in as deeply as he wanted.
The fall he was five, Jacob enrolled in a mainstream kindergarten class.
He and Kristine had prepped for it like a stealth military operation. Kristine wasn’t concerned about academics. Jacob could read; he could calculate. His abilities on kindergarten basics were almost absurdly advanced. It was the social aspect of kindergarten—the group play, the communication, the ability to follow directions—that was the element that she worried could bring it all crashing down.
They practiced every night. Sometimes they prepped on their own; sometimes they prepped at Little Light, a twice-weekly “kindergarten boot camp” Kristine had organized for kids with autism. The program had two goals: to help the kids develop their passions and to give them the tools to make it through circle time.
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