by Ann Hulbert
Without one, Jay was a prodigy who, however anomalous his brain might be, didn’t officially belong to a prodigious savant category that would always be tiny but was growing slowly as awareness of the phenomenon spread. Treffert’s unusual club soon had another member, whose mother had found her way to his website. Jacob Barnett was six years younger than Jay and Matt. As a toddler in rural Indiana, Jake had retreated into autistic silence, only to reemerge and surge ahead in math and science, astronomy in particular. He displayed phenomenal powers of recall and, barely out of kindergarten, began discussing Kepler’s laws. Jake could also play back tunes and do calendrical computing, his mother discovered before long. Surfing the Internet together, they looked for kids like him. When they came upon other savants, he eagerly displayed similar skills. She called Treffert, who predicted further surprises.
Whatever the distinctions among the prodigious boys might amount to, these children were—glaringly, unmistakably—different. And at the turn of the millennium, that otherness wasn’t explained away or played down or defined up (by, say, a term such as radical accelerant). Jake’s academic leaps thrilled his parents less as a sign that he was speeding ahead than as evidence that he could avoid derailment: terrified when he had shut down as a toddler, they dreaded that ever happening again. Unlike their prodigy predecessors, Matt and Jay were quite obviously not on a fast track to popular renown, or cutting-edge inventions, or vast fortunes (or likely to be swept up in an unanticipated wave of competitive interest, as Bobby Fischer had been). Their musical obsessions were hardly trendy—not that the small boys noticed. And their parents didn’t much care. Above all, they were intent on helping their hard-to-reach children engage somehow.
Propelled by sudden inspiration and rapt concentration, these strange young minds in turn moved parents and mentors to transcend conventionally ambitious dreams and refocus: look at how the unusual gifts could work wonders now. Avid testers like Julian Stanley had emphasized measurable mastery and a future-focused trajectory. In their defiantly idiosyncratic ways, so had tech-inclined upstarts from Bill Gates to Jonathan Edwards. By contrast, these prodigies highlighted the mystery of inborn talents. Even if the made-for-prime-time saga of uncanny virtuosity and effortless progress wasn’t the full story for Matt or Jay or Jake, as it surely wasn’t, here were gifts that had blossomed so far without competitive pressure. A tidy or speedy script for long-term success wasn’t on hand either. The boys and their families—as well as the experts probing for affinities among prodigious savants, “regular” prodigies, and the rest of us—were playing it very much by ear.
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You could say that inside just about every well-rounded young wonder touted in the twentieth century there had been a lopsided, often lonely rarity trying to get out. Autistic prodigies at the turn of the millennium succeeded—and then some. The boys invited the kind of awed appraisal that had greeted (and soon grated on) the nineteenth century’s most famous shut-in child, Helen Keller, and her teacher, Annie Sullivan, christened a “miracle worker” by Mark Twain. He also called her Keller’s “other half.” The pair’s emotionally entwined, pedagogically intense alliance was indeed crucial—and would have been impossible without Keller’s “soul-sense.” That was her phrase for the acute empathy that served as her special radar. Matt Savage and Jake Barnett experienced the opposite: “mind blindness,” the inability to extrapolate the mental states of others that is a signature symptom of autism. And if Jay Greenberg had any aptitude for social intuition, he kept it well hidden. The prodigy ideal of readily engaged standouts and deeply attuned mentors—an ideal so often observed in the breach—was obviously irrelevant.
Both the boys and the adults on whom they depended could hardly have been more disoriented—which is not to say they were unfocused. Acutely sensitive to stimuli, fixated on details, reliant on strict regimens and repetitive behavior, cut off from conventional expectations: the profile fit Matt and Jake starting very young. A version of it also fit their mothers, caught up in the all-consuming mission of doing their best to deal with children who weren’t merely out of step with peers, as Jonathan Edwards had been. Their sons seemed barely to register others. Meanwhile, Jay’s parents coped with a situation Bobby Fischer’s mother had known well: a hard-to-handle, exceptionally intelligent little boy on a track of his own, soon prompting calls from teachers. “So a problem child?” asked an interviewer from 60 Minutes in 2004. “Very problematic,” Jay’s mother replied. Yet there was also a silver lining of sorts. The extreme isolation could be a spur to learning, as Annie Sullivan had noted in Helen’s case. “She has one advantage over ordinary children, that nothing from without distracts her attention from her studies.”
But first comes the challenge—presented by ordinary and extraordinary children alike—of spotting the something within that might direct youthful curiosity and help develop raw capacities. Prodigies generally make that task astonishingly easy, very early, as Jay certainly did. On 60 Minutes, his mother, Orna Weinroth, an Israeli-born painter, implied a sudden epiphany. Out of nowhere Jay at two began drawing cellos, she said, and soon they morphed into notes on a staff. “This child told me, he said, ‘I’m gonna be dead if I am not composing. I have to compose. This is all I want to do.’…And when a child that young tells you where their vision is, or where they’re going, you don’t have a choice.”
Actually, “Bluejay,” as Jay called himself, hadn’t taken flight quite so spontaneously. Living in Chapel Hill, North Carolina, where Jay’s father, Robert, was teaching linguistics at the university, the Greenbergs enjoyed regular chamber music gatherings, sometimes in their own living room. Jay was transfixed (he got to see and hear cellos up close) as he was nowhere else. Naturally his parents paid eager attention to that messy musical notation of his. And when Jay had filled many notebooks by the age of six, the Greenbergs could turn, thanks to their musical network, to a Juilliard professor and composer named Samuel Zyman for advice.
Matt and Jake, by contrast, are testimony to how obscured those inner interests and aptitudes can be, and how difficult—and crucial—tapping into them may prove. Who knows whether they may be developed into an exceptional talent, but they just might serve as a basic conduit to the world. Or could, if not for a catch-22: autistic children supply at best garbled signals to guide their elders. Matt was chattering away and reading at eighteen months, and counting Cheerios in his high chair. His parents—Diane Savage, then a computer programmer for a company in the Boston area, and her husband, Larry, a chemical engineer who worked in IT at Raytheon—took pride in their precocious son. At the same time, they couldn’t ignore Matt’s hand-flapping, his failure to make eye contact, his aversion to touch and to all kinds of sounds, even the swishing of windshield wipers. He would throw fits over rituals gone awry. (Matt’s bedtime routines, jotted down for his grandmother, filled a legal-size page.) The Savages, who in the early 1990s knew next to nothing about autism, felt they had an explanation for their brilliant boy who demanded quiet, except when he wailed at a noisy world: “He’s so busy learning things, he can’t deal with the sensory side of things was our theory,” Diane said. But Matt’s brief foray into Montessori preschool—he lasted two days before being “officially expelled,” as she put it—tested the theory. Something just wasn’t right, and Diane, a woman used to getting results, now needed answers.
With Jake, the discordance was more dramatic, as his mother, Kristine Barnett, chronicled in her 2013 memoir, The Spark: A Mother’s Story of Nurturing, Genius, and Autism. Before he turned two in the spring of 2000, he was a giggly, easygoing toddler who wrestled with his dad and was a wizard with words. He talked early and recited the alphabet backward and forward. He memorized DVDs (not just in English: he liked switching the language selection). He read along with a CD-ROM of Dr. Seuss. But gradually he ceased to speak or respond. Kristine, who poured her abundant creative energy into directing a lively day care center in their garage, watched him gaze for hours at plaid fabrics and
patterns of shadows. He would spin in dizzying circles, stare at his hoard of flash cards, shrink from physical contact. At least he didn’t throw fits. Michael, Jake’s father and a Target employee, kept saying it was just a phase. But articles about autism were everywhere now, and Kristine’s mother, struck by one, dared to suggest they had better find out what was wrong.
For both the Savages and the Barnetts, a diagnosis delivered a reverse epiphany. They, unlike the Greenbergs with Jay, got no sudden insight into what their sons desperately wanted to do. Instead, it now hit them how much they, the parents, were going to have to do—and how little they, or perhaps anybody, understood what was happening in those young heads. “Your son,” Diane was stunned to hear when she took Matt, now three, to be evaluated at Boston Children’s Hospital, “has pervasive developmental disorder with hyperlexia. He’s perseverative and echolalic and speaks in a Gestalt manner.” Her multisyllabic talker, Diane now realized, was imitating more than communicating. Churning through books, Matt wasn’t following the plots. The experts proposed the then newly minted Asperger’s label. Six years later, Kristine received the same verdict when a battery of in-home assessments revealed that along with radically skewed skills, Jake had a superhigh IQ. Unaware that Asperger’s was on the dreaded autism spectrum, Kristine was briefly buoyed—and then a second evaluation before he turned three put him into the “full-blown autism” category.
In both families, the diagnoses coincided with the arrival of new babies—barely noticed by their big brothers but guaranteed, or so it soon seemed, to overwhelm already daunted parents. Matt’s sister was a difficult infant who went on to present her own set of developmental issues. The Barnetts’ second son, diagnosed with a dire neurological disorder called reflex sympathetic dystrophy, was in acute pain and danger. Yet the cascade of humbling burdens inspired, if anything, unprecedented helicoptering zeal. Convinced there was no time to waste in fighting back against fatalistic predictions for sons like theirs, Diane and Kristine redoubled their focus on their firstborns, while their husbands stepped up to deal on other fronts.
The maternal approach, at the outset, was lockstep-parenting-according-to-the-experts of a sort that could make the most Ivy League–obsessed overschedulers look like slackers. “We research the hell out of everything. That’s our scientific approach,” explained Larry, who quit his job to manage the intricate family logistics. (He took up financial investment work from home.) Diane, who left her job as well, immediately turned for advice to the autism crusader then on the cutting edge. The very night she got back from Matt’s evaluation at Children’s Hospital, Diane called Bernard Rimland, the founder of the Autism Research Institute, not expecting him to pick up. It was late, but he did.
The Savages put Matt on the DAN! (Defeat Autism Now) protocol, the array of dietary strictures and other treatments that Rimland had begun promoting—the cure, in his view, for a biomedical disorder caused by toxins, nutritional issues, and immunological problems. Matt’s sensitivities, his parents felt, quickly improved. He wasn’t easy to get through to, but they put his hyperlexia to use: often unresponsive to verbal directions, Matt couldn’t resist reading written notes. He also underwent Auditory Integration Training, another experimental treatment for autism gaining popularity in the early 1990s. And Diane choreographed an intensive weekly regimen of carefully vetted therapy sessions (occupational, physical, speech, behavioral) for him, plus a roster of parent support group meetings and conferences for her.
Every interaction with Matt had an “ulterior motive,” she said. Even what looked like downtime at home was hardly a respite. The purpose of their games was to help him overcome social barriers, learn new behaviors, acquire the basic life skills he lacked. But Diane had rewards at the ready, too, to keep him on task with the retinue of specialists. She couldn’t order enough math workbooks and puzzles as treats for a boy who could tell her, and did, “My mind is made of math problems.” At the nearby autism preschool collaborative the Savages joined, Matt and his parents learned a lot from a wonderful teacher’s positive strategies, and by luck she moved on to the public kindergarten at the same time as Matt did. Still, Diane was exhausted, and Matt, now six, seemed to be slipping. Bothered by sounds again, he acted out more.
A half decade later, out in Middle America, the Barnetts were several steps lower on the income ladder than the Savages, and their son was drifting further toward the low-functioning end of the autism spectrum. For Kristine and Michael, state-funded professional services for children with autism were the affordable resource at hand—a special education realm by now more systematized than the cure-focused vanguard at the core of Diane’s tailor-made treatment plan. Jake was signed up for the full range of therapy that Indiana’s First Steps program offered children with developmental issues until they turned three. “The calendar on the kitchen wall was so jam-packed that nobody but I could read the microscopic handwriting I used to cram it all in,” Kristine noted.
Doing further research, and pestering (her word) therapists who had become friends, Kristine wanted to do more. She was spurred on, and scared, by the persistent contrast between the eager mayhem of her day care kids and the mute disengagement of a son who had once tumbled among them. Kristine and Michael added forty hours a week of “applied behavior analysis” work with Jake, later shifting to a less drill-oriented and more child-initiated “Floortime” therapy (which was just as time-intensive). And when First Steps services ceased, and a summer loomed before state-funded developmental preschool began, Kristine got even busier. She devised more sensory-rich activities to keep Jake from losing ground, enlisting high school volunteers to help.
But she could tell Jake wasn’t really tuning in, and after starting to communicate by pointing at cards with pictures—a big step—he made little progress. He did, though, surprise her. At a toy store one day, after listening to various music box tunes, he proceeded to play them all on an electric roll-out piano mat by the cash register. She also couldn’t help noticing that during the activities he did on his own time (what little there was of it), “his focus was ferocious,” and the results could be startling. That summer Jake was obsessed with Kristine’s knitting basket. He pulled out yarn and wrapped it all around the kitchen. Instead of a “terrible, tangled mess,” she was stunned to find he had woven intricate multicolored webs.
What the two of them needed, it dawned on her, were breaks from the constant work of therapy. Kristine began scooping Jake up, along with a box of Popsicles, for short nighttime outings to a nearby country pasture—plain old childhood fun. He still barely acknowledged her presence, but he was obviously transfixed by the stars, even if he couldn’t tell her that. Several months into their “dates,” he once actually blurted out a “night-night” at bedtime. So Kristine was crushed as she watched the relaxed boy of those summer moments regress when he began heading off on the bus to spend his days in developmental prekindergarten.
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However tirelessly they followed the experts’ regimens in the early years, neither Diane nor Kristine was about to settle for mere repetitive structure and drills. (“Did you get in your hours?” was the refrain among parents with autistic children.) Their best guides, as they did their utmost not to forget, were the boys right in front of them—each stuck at a difficult point. Matt, struggling with sensory overload at six, and Jake, who seemed miles from being kindergarten-ready: both had their mothers feeling stymied, discouraged by the narrow emphasis on the basic skills their boys lacked. Their maternal reflex, which helped them forge on, was to shift the focus to gifts they were sure lurked within.
“I always believed that even when he was hard to reach, there was a shining star in there,” Diane later told a CNN interviewer eager to hear about Matt. Her goal: “we just had to find a way to get to it.” The rhetoric of unshakable faith in an inner light ran through Kristine’s book, too, an amped-up echo of Annie Sullivan’s insistence on kindling Helen Keller’s interests, bucking straitlaced pedagogy in
the process. “I knew my child better than any expert could,” Kristine wrote. “And I saw a spark in Jake. Some days, true, there was only the faintest glimmer.”
Framed this way, manic helicoptering became something more like heroic liberating. The top-down micromanaging was supplanted, or at any rate richly supplemented, by bottom-up empowering. Where lore had it that Helen Keller suddenly awoke to the possibilities of language as her teacher spelled into her hand at the water pump, the child-driven drama with these boys was different: discovering and encouraging their special language was a quest that kept adults on their toes. That was true for Jay, too. A child of few words, he needed his parents as intermediaries more than as interveners, since his composing fervor readily drew well-positioned facilitators. Jay first met Samuel Zyman, the Juilliard professor who was also a composer, on a visit to New York City when he was six or seven. Small talk and eye contact never happened, Zyman recalled, but they engaged through music. The notebooks Jay had been filling for years revealed piano sonatas influenced by remarkable insight into how Beethoven wrote his. And when Jay stopped in on a rehearsal of Zyman’s guitar concerto, he leaped at the chance to turn pages as Zyman played the orchestral part on the piano. After one run-through, Jay’s comments on the piece showed he grasped its structure and harmonies in ways that floored Zyman.