The Prodigy's Cousin

by Joanne Ruthsatz

  Jourdan was named one of the top ten youth volunteers in the nation by the Prudential Spirit of Community Awards, the New York Post awarded him a Young Heart Liberty Medal, and he received a National Caring Award and a World of Children Youth Award. Teen People named him one of Twenty Teens Who Will Change the World.

  As a spokeswoman for the National Multiple Sclerosis Society once put it, Jourdan’s work “dramatically illustrated that a small hinge can swing large doors.”

  Jourdan isn’t the only prodigy with a mind oriented toward helping those around him. Many prodigies seem to need to do good in the same way they need to paint, perform, or calculate.

  Jacob Komar was typing computer commands at two and studying computer manuals at five. He soon began writing code and dismantling and rebuilding old computers. When Jacob was nine, he acquired a heap of old computers headed for the trash from his sister’s school in Connecticut. He repaired the machines, and for about a year he refurbished roughly two computers each week. He coordinated with a local social services office to identify families who needed a computer and then delivered the machines personally.

  Jacob’s computer repair operation expanded. Eventually, he had more than two hundred computers waiting to be refurbished. They filled the Komars’ garage; the family’s cars had to be parked outside. Jacob enlisted help from friends, classmates, and strangers in his quest. People across the country who wanted to start similar programs contacted Jacob. He spoke with many of them and created a how-to manual to provide guidance for these groups. Jacob’s nonprofit partnered with other organizations and won a $1 million grant from the National Science Foundation to teach junior high and high school students technology skills. He teamed up with the Cheshire Correctional Institution to teach prisoners how to refurbish computers in the prison repair shop.

  In the meantime, he had been zipping through his own education. At sixteen, he graduated from the University of Hartford with a computer engineering degree. The following fall, he began a Ph.D. program at Brown University. A year after he completed his master’s degree in electrical engineering, Jacob flew to Peru to set up a computer lab for the Sacred Valley Project, a nonprofit that helps educate girls in remote areas. A few months later, he flew back to help install solar panels in a rural community without electricity.

  Other prodigies demonstrate the same extreme empathy. When visiting his father at the hospital, the child chef Greg Grossman was moved by the young cancer patients. He raised money to donate electronic games and movies to the children awaiting treatment. As his culinary reputation grew, he cooked for countless fund-raisers, hosted tasting tables at charity events, and regularly flew to Ohio to support Veggie U.

  Lucie’s son William was so troubled by the goal of dodgeball—to get other people “out”—that he always tried to get “out” himself at the beginning of the game to avoid doing something unkind to another child.

  Many of the prodigies seize any opportunity to use their special skills for the benefit of others; when faced with the plight of someone in need, they take the task upon themselves. It never seems to occur to them to wait for an adult to help.

  The gulf between autism—as portrayed by the mind blindness theory—and prodigy seems vast. But the empathy gap may not be as large as it seems. There’s another, newer theory of autism—the intense world theory—far removed from the deficit-focused orientation of the first generation of cognitive theories. It’s built from the premise that perhaps the autistic brain isn’t less of anything. Perhaps it’s more.

  In 2002, Tania Barkat was surrounded by rat brains.

  The project she was working on had been suggested by her adviser, Henry Markram, a famous neuroscientist (he would later coordinate the Human Brain Project, a hugely ambitious effort to build a working model of the brain) at the Swiss Federal Institute of Technology. Markram had begun reading about autism when his son was diagnosed with the condition. He had spent his career studying brain circuitry, and he wanted to investigate the autistic brain at the cellular level using an animal model—thus, Barkat’s rats.

  Barkat, who was then a Ph.D. candidate, exposed some of the rats prenatally to a chemical compound, valproic acid (VPA), that increases autism risk. She then carefully preserved and prepped rat brain slices so that she could stimulate the brain cells and measure the response. She wanted to compare the rats’ brains and see if she could identify any abnormalities in the VPA-exposed rats’ inhibitory cellular networks.

  Barkat examined various layers of the brain; she looked at different classes of cells. But after two years on the project, everything in the VPA-exposed rats still looked normal. Markram thought they had exhausted the approach.

  But Barkat wasn’t ready to give up. One of her colleagues was studying excitatory cell networks, which gave her a new idea. Maybe the problem wasn’t with the approach; maybe it was with the types of cells she had been targeting. She decided to switch from studying inhibitory networks to studying excitatory networks.

  After Barkat changed tactics, she quickly began to see differences between the VPA-exposed rats and their typically developing counterparts. She and a group of fellow researchers set about trying to pinpoint exactly what those differences were.

  It turned out that the brains of the VPA-exposed rats were “supercharged.” Their neurons generated many more connections to other neurons—more than 50 percent more—than those in the control rats’ brains. When stimulated, the brains of the VPA-exposed rats reacted nearly twice as strongly as the brains of the control rats. The long-term impact of that stimulation was also much greater for the VPA rats: while both VPA and control brains demonstrated increased reactions to later stimuli, the increase in amplitude for the VPA brains was more than twice as large as that of the controls.

  Through studies of live rats, the team discovered that their VPA rats had some unusual behaviors, too. They had overblown levels of anxiety and fear: they learned what to fear more quickly, generalized that fear more broadly, and were slower to release that fear than the control rats.

  To investigate the roots of these behaviors, the scientists examined the rats’ amygdalae. The amygdala consists of two relatively small, oval-shaped sets of neurons embedded deep within the back of the brain. It’s considered mission control for fear; scientists believe that it’s where we store our memories of fear and process threatening situations. After discovering the VPA rats’ fear behaviors, the researchers investigated whether their amygdalae, too, were supercharged.

  The answer was yes. The VPA rat amygdalae were more responsive to stimulation, and the effects of that stimulation were longer lasting.

  From these findings, the intense world theory of autism was born. Henry Markram, his wife and fellow neuroscientist Kamila Markram, and Barkat proposed that the autistic brain’s hyperactivity, its ability to form numerous, strong connections, results in heightened perception, attention, memory, and emotionality. These tendencies, the theory goes, could explain all facets of autism: Autists’ withdrawal and repetitive behaviors might stem from their extreme sensitivity to stimulation, which might make some environments painfully intense. Autists’ excellent attention to detail might be a by-product of heightened perception. Savant skills and exceptional memory might flow from the brains’ ability to change and make new connections quickly.

  The intense world theory also has something intriguing to say about empathy. The scientists believe that there’s no autism empathy deficit at all. According to this theory, autists are too perceptive; they feel too deeply for others—so much so that they become overwhelmed by their feelings and withdraw or avoid social interactions.

  It’s an intriguing theory built not around deficits but, in a sense, around strengths. It’s yet to be proved, and not all scientists support it.

  But for many families and autists, this theory—particularly the empathy piece—better aligns with their experiences. Certainly some people recognize
a failure to read emotional cues in the autists they know, but others perceive their children as extraordinarily attuned to others and give them nicknames like “emotional barometer” and “mood ring” for their abilities to sense others’ feelings.

  Some autists have articulated the way that this sensitivity can make social interactions feel like an assault, just as predicted by the intense world theory. One man commented that to him other people seemed like “emotional tornadoes”; a woman felt as if others’ emotions were punching her in the face. Such social experiences can leave those with autism feeling exposed or overcharged: one man felt as if his heart and soul were “like an exposed nerve to the world.”

  As a result, some autists report experiencing the predicted emotional overloads. One woman wrote about her tendency to “go into sensory lock down,” ensconcing herself in the safety of her “bubble.” A woman with Asperger’s disorder was distraught for an entire weekend because she thought she had killed a butterfly. Positive experiences, on the other hand, could also reverberate deeply. As one individual put it, a non-autist would need a whole evening of hugs and reassurance to feel as cared for as he did after receiving a pat on the back and a smile from another autist.

  There’s still much work to be done on the intense world theory of autism. But seen from the perspective of this theory, many autists have astounding intellectual capabilities and are highly sensitive to the plight of others—just like the prodigies. If mind blindness seemed to cast prodigies and autists as polar opposites, the intense world theory casts them as close cousins.

  It had been there all along.

  The idea that autism was linked to various strengths has appeared in academic writings since Kanner identified autism as an independent condition in 1943. In that first paper, he described the autists’ excellent memories for vocabulary, rhymes, and patterns; he said the children were all “unquestionably endowed with good cognitive potentialities.” The following year, Asperger observed that some autists demonstrate “a high level of original thought and experience.” A late 1970s study concluded that approximately 10 percent of autists possessed notable abilities in music, art, and other areas; since then, scientists have identified other autism-linked strengths, such as excellent attention to detail.

  For decades, these strengths were mostly relegated to the background as researchers sought a cognitive explanation for autism. But over time, researchers adopted a broader understanding of what autism could look like, and there was a renewal of interest in those intriguing abilities and strengths that had appeared in even the earliest autism studies. The deficit-focused orientation toward autism began to give way.

  Frith was partly responsible for this shift. Her own perception of autism was already evolving when she read Hans Asperger’s 1944 paper during a seminar. Frith was struck by Asperger’s description of autism, and she eventually decided that it should be made more widely available. Her 1991 translation of his work into English put autism in a startlingly different light for many people.

  In this paper, Asperger notes the children’s social difficulties and repetitive behaviors as well as their highly original use of language, distinct areas of special interest, and excellent logical and abstract thinking. He claimed that autism could affect individuals of any ability level and emphasized that autists of high ability had extraordinary potential. As long as they were “intellectually intact,” Asperger thought that professional success, “usually in highly specialised academic professions, often in very high positions,” was almost inevitable given the autists’ deep passions and keen intellects:

  Able autistic individuals can rise to eminent positions and perform with such outstanding success that one may even conclude that only such people are capable of certain achievements. It is as if they had compensatory abilities to counter-balance their deficiencies. Their unswerving determination and penetrating intellectual powers, part of their spontaneous and original mental activity, their narrowness and single-mindedness, as manifested in their special interests, can be immensely valuable and can lead to outstanding achievements in their chosen areas. We can see in the autistic person, far more clearly than with any normal child, a predestination for a particular profession from earliest youth. A particular line of work often grows naturally out of their special abilities.

  From this description of autism, finally available to English-speaking audiences more than forty-five years after it was first published, the gap between prodigy and autist seems quite small. With minimal tinkering, the same passage could have been written about child prodigies.

  But some researchers questioned whether individuals like those described by Asperger were actually autistic. When Asperger’s disorder first appeared in the DSM in 1994, it was listed as a diagnosis separate from autism. It wasn’t until the DSM-5 was published in 2013 that Asperger’s disorder was formally enveloped into autism spectrum disorder.

  Encompassing Asperger’s disorder within the folds of autism was part of a larger trend toward loosening the definition of autism. Even before the DSM-5 was issued, autism diagnostic criteria had been evolving in ways that led to more autism diagnoses and to people with a broader range of abilities being included on the autism spectrum.

  New evidence also made autism and intellectual disability seem less closely intertwined. A 2006 review study challenged the evidence on which claims of extensive overlap between the two conditions had been based. Another study found that while a significant percentage of autists were intellectually disabled, a significant percentage also had average IQs, and some even had above-average IQs (a finding that might have been due in part to the broadening criteria for autism).

  Another line of research suggested that merely swapping out an intelligence test that required oral instructions and responses (the Wechsler Intelligence Scale for Children) for a differently structured, nonverbal test (the Raven’s Progressive Matrices) significantly increased autists’ scores. In one study, switching to the nonverbal test catapulted the autists’ average score thirty percentage points and removed the scores of all but 5 percent of the autistic children from the “low functioning” range.

  The cognitive theories of autism, too, evolved to more fully incorporate autistic strengths. The executive function theory (based on the idea that autism stems from deficits in planning, goal-setting, and related abilities) was essentially dismissed as a primary explanation for autism. The weak central coherence theory (based on the idea that autists have an imbalance in the way they integrate information) was revised to emphasize autists’ superior local processing rather than their failure to see the big picture.

  Baron-Cohen recast mind blindness as the empathizing-systemizing theory of autism. The new theory emphasized that autists had intact or strong systemizing, the drive to find the rules that govern systems such as language syntax, train timetables, and tidal wave patterns. Though an empathy deficit remained at its core, even this component of the theory didn’t divide prodigies and autists as much as it might seem. Baron-Cohen and other researchers believe that empathy actually has two components—cognitive empathy (the ability to recognize the feelings of another) and emotional or affective empathy (having an appropriate emotional response to others’ feelings). These researchers think that autists have a deficit in cognitive empathy but have intact or an overabundance of affective empathy. Baron-Cohen has further explained that even though autists lack cognitive empathy, they are often “supermoral.” The drive to systemize, Baron-Cohen says, leads autists to develop highly sophisticated moral codes and a strong sense of justice.

  These new and revised theories portray autism as a condition that encompasses strengths as well as weaknesses. The revised weak central coherence theory emphasizes autistic attention to detail, a trait shared with the prodigies. The empathizing-systemizing theory of autism accounts for autists’ strengths in rule-based subjects, like math and chess, and specifies that autists have excellent affective empathy�
��just like the prodigies. The intense world theory portrays autists as highly empathetic and perceptive individuals with enhanced memory capabilities. These strength-recognizing theories, built from the rubble of the early, deficit-focused theories, offer a starkly different take on autism. From this perspective, the connection between autism and prodigy isn’t just conceivable; it’s almost inevitable.

  Chapter 8

  Another Path to Prodigy

  Sometimes the genetic, autism-linked explanation for prodigy comes up short. The family connection between autism and prodigy is strong, but it’s not perfect. Some—roughly half—of the prodigies come from families without autistic relatives.

  These prodigies still have autistic traits. They demonstrate the same heightened attention to detail and penchant for obsessive interests as the other prodigies.

  How could these traits stem from a family link with autism if there’s no autism in the family?

  There are a few potential explanations. Perhaps there’s autism in far-flung parts of the family tree. Perhaps it’s the unique combination of the prodigies’ parents’ genes that introduced some autism-linked traits into the family for the first time. Perhaps these prodigies didn’t inherit the relevant genes at all but have de novo genetic mutations—mutations present in the individual but not in either parent—that contribute to their incredible memories and focus.

  But there’s another possibility as well. Perhaps the pathway to prodigiousness is paved not just by the children’s genes but also by their environments—the events or substances to which they are exposed prenatally or even after birth.

  This seems to be the case for autism. Though it’s highly heritable, genes don’t always tell the whole story. There are some known environmental risk factors for autism (environmental in the sense that they aren’t directly tied to genes—not in the long-discarded “refrigerator mother” sense). Children exposed in utero to valproate, an antiepilepsy medication, or to thalidomide, a medication once tragically prescribed to treat morning sickness (and now used to treat skin conditions and cancer) and known to cause severe birth defects, have increased rates of autism. Similarly, some studies have demonstrated an increased risk of autism for children with congenital rubella (a condition that can develop when a pregnant woman contracts rubella).