The Prodigy's Cousin

by Joanne Ruthsatz

  It’s unlikely that those family members are secret prodigies or autists; both conditions are typically pretty hard to miss. The more likely explanation, the team believes, is that the identified region on chromosome 1 doesn’t act as an on-off switch for prodigy and autism; both conditions are far more complex than that.

  Perhaps this area on chromosome 1 is tied to a particular characteristic shared by prodigies and autists, like exceptional memory, a sharp eye for detail, or a tendency toward developing passionate interests. According to this theory, those non-prodigious, non-autistic family members who share the variation on chromosome 1 would possess that particular trait but lack whatever genes are responsible for the other behaviors of autism, the other behaviors of prodigy.

  But which trait could it be? From the team’s data, there’s no way to be sure—or even to know if this theory is correct. And chromosome 1p31-q21 isn’t exactly a hot spot in the search for autism’s genetic roots. The short arm of chromosome 1 has come up a few other times in autism genome scans. In each instance, the region generated enough friction that it seemed worth mentioning, but in each case it fell short of statistical significance. Perhaps this is partially because there’s a rare variant at play in these families; perhaps it’s because there aren’t many people tearing through the genome searching for the genetic source of the strengths associated with autism.

  In either case, it’s a preliminary result based on a small sample. It needs to be replicated; the team needs to conduct additional analyses to isolate the specific mutation (or mutations) at play. But if the preliminary results hold up, then the team has uncovered a major piece of the prodigy puzzle. The results would mean that prodigies and autists don’t just have shared behaviors and cognitive traits; their similarities extend all the way down to their genes.

  Chapter 7

  The Empathy Puzzle

  In the late 1970s, Uta Frith encountered someone unexpected: an autistic boy who spoke with remarkable fluency.

  He was something of a puzzle. Frith had already been studying autism for over a decade; while some of the boy’s behaviors certainly appeared autistic, his speech cut against her beliefs about autists’ abilities. She and a colleague began an earnest conversation about whether such a highly verbal child could actually have autism.

  The prevailing picture of autism at the time was clearly very different from the one we have now. As Frith recalls, researchers thought that autism was extremely rare, affecting perhaps four people in ten thousand; she and her colleagues thought that they knew of nearly all the autists living in London. The autists they knew, moreover, were all children, and almost all of them were boys.

  Autism was also thought to be closely linked with intellectual disability. While today there are prominent figures such as Temple Grandin who are highly intelligent, professionally accomplished, and on the autism spectrum, in the 1970s and 1980s it was widely believed that the vast majority of autists—some studies put the figure as high as 94 percent—had IQs in what was then called the mentally retarded range. The DSM-IV, published in 1994, claimed that “most cases” of autism had “an associated diagnosis of mental retardation.”

  This relatively narrow perception of autism was initially reinforced (or perhaps reflected) by a particular turn in autism research: the quest to uncover a cognitive explanation for autism. It’s an effort that began in the 1980s when a number of autism researchers dedicated themselves to identifying a cognitive abnormality—some oddity in the way the brain processed information—that could explain all of autism’s core symptoms.

  Those core symptoms were all deficits, such as social and communication difficulties. Most assumed that these behavioral deficits had to stem from a cognitive deficit. As a result, the first scientists to partake in the hunt for a cognitive explanation for autism looked for mental weaknesses rather than strengths and perceived those weaknesses as autism’s defining characteristics.

  It’s not surprising then that when these researchers began generating cognitive theories of autism, those theories were almost entirely deficit focused. The executive function theory, for example, was based on the idea that autists had an impairment in those abilities related to setting and working toward goals, such as planning and impulse control, that resulted in their insistence on sameness and repetitive behaviors. According to the weak central coherence theory, autists had an imbalance in the way they integrated information—basically trouble seeing the forest for the trees—that resulted in their communication and social difficulties and repetitive behaviors, as well as a “peculiar pattern of intellectual abilities.”

  Autists, as portrayed by these theories, appear almost completely divorced from prodigies. The same is true of the mind blindness theory of autism, a cognitive theory that suggested that autists lacked the ability to empathize—a trait that prodigies have in abundance.

  It all started with a chimpanzee.

  In the 1970s, two researchers set out to test whether a chimp named Sarah had a “theory of mind”—an understanding that others had motives and beliefs different from her own. They showed Sarah a series of videotapes in which an individual struggled to reach bananas, escape from a cage, or complete other tasks. They found that Sarah could use photographs to indicate the actions needed to reach that goal and that she systematically chose different outcomes for different actors. The researchers argued that Sarah could thus infer the intentions and knowledge of others, demonstrating that she had a theory of mind.

  It was an intriguing concept, and scientists began examining theory of mind in humans. In the early 1980s, two researchers concluded that most children developed theory of mind between the ages of four and six.

  But was this true of all children?

  One team of researchers thought not. Frith and Alan Leslie, both then psychologists at the MRC Cognitive Development Unit in London, and Simon Baron-Cohen, then a doctoral student, predicted that autistic children might not have such an ability.

  To find out, Baron-Cohen put sixty-one children through what would become known as the Sally-Anne test. The child-subject looked on as a doll, Sally, placed a marble in a basket and then left the area. In the Sally doll’s absence, the Anne doll removed the marble from the basket and placed it in a box. The Sally doll then returned, and the researcher asked the child-subject where Sally would look for the marble.

  Most typically developing children passed the Sally-Anne test. The children said that Sally would look for the marble in the basket where she left it, demonstrating an understanding that what they knew (the marble was in the box, where Anne placed it) was different from what Sally believed (the marble was in the basket, where Sally left it). But most autistic children said that Sally would look for the marble in the box, where the child-subject knew that it actually was, even though the marble had been moved in Sally’s absence. The researchers concluded that perhaps autistic children couldn’t differentiate Sally’s knowledge from their own, a lack of theory of mind that Baron-Cohen (the team member who became most closely identified with this line of research) eventually described as mind blindness.

  It was a firecracker of a study. Theory of mind research proliferated as psychologists examined autists’ abilities to detect faux pas, discern a person’s feelings from photographs of his or her eyes, and respond to the emotions of a videotaped child. In nearly every case, they found some evidence that autists lacked typical theory of mind.

  It wasn’t long before scientists linked a lack of theory of mind to a lack of empathy. A few autism researchers had noted in the past that autists seemed to lack empathy, but as researchers investigated theory of mind, this notion became firmly ingrained in the popular consciousness. Baron-Cohen at one point described mind blindness as “deficits in the normal process of empathy.” He and his colleagues at the Autism Research Centre developed the Empathy Quotient, a test meant to measure empathy in adults. In piloting this test, the researchers predicted—
and found—that those with high-functioning autism or Asperger’s disorder scored significantly lower on the Empathy Quotient than those without autism. A group of researchers later characterized a lack of empathy as “one of the key characteristics” of Asperger’s disorder; others described autism as “marked by empathy deficits.”

  The perception that autists lack empathy made prodigy and autism appear completely divorced from each other; after all, for the prodigies empathy seems to be second nature.

  Jourdan Urbach is of medium height and build with thick brown hair, thick eyebrows, and a close-trimmed beard. He speaks with matter-of-fact authority about subjects ranging from nerve remyelination to the ethics of international volunteer work. There’s an intensity about him, a palpable energy that propels him forward; it seems that momentum must always be on his side.

  These days, he’s an entrepreneur. He’s the co-founder and chief technology officer of Ocho, a social video app. But entrepreneur is only the latest of Jourdan’s professional incarnations. By the time he was twenty-two years old, the Yale graduate had already had several other careers—scientist, musician, and philanthropist.

  The first of these careers was music. For as long as Jourdan can remember, there has been music in his head—sometimes original compositions, sometimes other people’s music—and usually in his fingers, too. These days, that music is in the background. But it wasn’t always so.

  As a toddler, Jourdan ambled about his Long Island home carrying a tape player equipped with classical music cassettes. His mother, Deborah, was a cantor and gave voice lessons; when her lessons ran late, Jourdan would gather his favorite stuffed animals, lie underneath his mother’s piano, and listen.

  During one lesson, Deborah asked her twenty-two-month-old son to identify the note her pupil had sung. Jourdan correctly answered, “A.” Deborah quizzed Jourdan on several more notes. Each time, the toddler answered correctly. Not long after, he identified the notes of the sounds made by the teakettle and the vacuum cleaner.

  Deborah brought Jourdan to see a musician friend at a local school. He watched Jourdan bang around on a few instruments and then confirmed that Jourdan had perfect pitch; Jourdan could immediately identify a musical note plucked out of thin air. The musician advised Deborah to get Jourdan started on an instrument right away.

  At an orchestra concert, a two-and-a-half-year-old Jourdan picked out the violin as the instrument he wanted to play. His parents bought him one—“the tiniest violin you could imagine,” as his mother later recalled during an interview with the New York Daily News. Jourdan breezed through the Suzuki volumes of classical music. By the time he was four, he had mastered them all. At six, he was winning regional music competitions. When Jourdan was seven, a renowned violin instructor took him on as her youngest pupil.

  Jourdan’s passion for science developed alongside his abilities as a musician, and it was the combination of the two that would turn him into a tiny philanthropic powerhouse. When he was in first grade, he began a research assignment at his local public library. The topic was wide open. Jourdan typed “neurosurgery” into a library computer; as he recalls, he thought the human mind was an intriguing, relatively unexplored frontier. A list of books popped up, and Jourdan closed his eyes and put his finger in the middle of the screen.

  He landed on Gifts of Time, a book about Dr. Fred Epstein, a pediatric neurosurgeon known for lifesaving operations in seemingly hopeless cases. Jourdan was enthralled by Dr. Epstein’s story. He wrote the doctor a letter explaining that he was seven years old, a devoted student of neuroscience, and a concert violinist; then he requested an interview. Dr. Epstein invited him to Beth Israel Medical Center in Manhattan.

  Jourdan arrived at the hospital with a large black tape recorder and a long list of questions. He met with Dr. Epstein and a neurogeneticist. Jourdan grilled the doctors for more than two hours. Afterward, Dr. Epstein took Jourdan on a tour of the hospital’s tenth floor. Behind the glass wall of each room was a different child. Some were Jourdan’s age; many were suffering. In what would become a pattern in his life, this deeply personal experience served as a call to action that led Jourdan to take on challenges seemingly far beyond his years. Jourdan asked how he could help.

  “I anticipated med school would be a breeze and I could probably drop out of elementary school and go do that instead,” Jourdan recalled. “He told me it would be a solid twenty years, and at that point I said, ‘That’s no bueno. What can I do now?’” Dr. Epstein suggested that Jourdan find a way to help the patients through his music, and Jourdan and his friends began giving monthly performances for the children at Beth Israel.

  Two years after his hospital performances began, Jourdan met Jason (a pseudonym), a thirteen-year-old who was frequently in the hospital with recalcitrant spine tumors. Jason was a concert pianist and hated not being able to practice at the hospital. Jourdan, who acutely understood Jason’s need to play, set out to raise the money to buy a piano for the children in the hospital. He wrangled together a group of musicians and organized a concert fund-raiser at a high school auditorium.

  “We packed it. I think the folks at the hospital that we had been working with for God knows how many performances at that point really came through for us and rallied a whole bunch of folks to come out of the city to Podunk Roslyn,” Jourdan said. “I think the community rallied around it as well.”

  The event generated thousands of dollars—there was enough to buy a piano for the tenth floor; there was money left over to begin a children’s surgery fund. The success of the event led Jourdan to found a nonprofit organization that used musical performances to raise funds for charities, particularly those that benefited children. “I saw the force multiplier that fund-raising could be and decided to pivot,” Jourdan recalled. “I think I was nine at that point.”

  That same year, Jourdan began an internship at Cold Spring Harbor Laboratory, a famed genetics and molecular biology research institution on Long Island. He came to the lab every week or two and spent a few hours shadowing Eric Drier, a postdoc studying memory. “I really wanted to work there. I was obsessed with Watson and Crick and DNA. I was a total fanboy,” Jourdan recalled.

  Jourdan shadowed Eric through experiments. To keep up with what was going on at the lab, he taught himself high school biology, anatomy, physiology, and chemistry. Sometimes Eric gave Jourdan assignments to complete. At one point, the two investigated fruit flies and memory; as part of the experiment, the fruit flies were occasionally zapped with sixty volts of electricity. Jourdan felt bad for the flies and tested the grid out on himself.

  Jourdan and Eric chatted while they worked. They covered everything from mutant fruit flies to synaptic plasticity to a science fiction book Jourdan had written. A persistent theme through all of their conversations was Jourdan’s desire to have a positive impact on other people. “He would talk about helping others pretty regularly,” Eric remembered. “I found it very heartwarming that he was concerned—very concerned—about helping out other people.”

  At eleven, Jourdan made his Lincoln Center debut, performing as a soloist with the Park Avenue Chamber Symphony. Much of his family came to watch, but one of Jourdan’s cousins was missing from the audience. Jourdan soon learned that she had been diagnosed with rapidly progressive multiple sclerosis (MS).

  Jourdan again responded with every resource he had. He gave concerts at Carnegie Hall in Manhattan and the Shubert in New Haven to benefit the National Multiple Sclerosis Society. He paired up with a faculty member at Stony Brook University School of Medicine and began studying myelin repair and other MS-related issues. At sixteen, he interned at a Harvard Medical School lab and worked on the genetics of multiple sclerosis. He eventually served as the keynote speaker at an MS event in Minneapolis and was featured at the Connecticut chapter of the National MS Society’s Annual Meeting and Awards Ceremony.

  Jourdan enrolled at Yale at seventeen. Within a few months
of his arrival, he launched the International Coalition of College Philanthropists, an organization dedicated to supporting college students’ fund-raising. “I wanted a platform that was totally clean for kids to be able to go out and fund raise against and then funnel into micro-finance projects, really simple stuff. Now it’s common; at the time it wasn’t,” Jourdan recalled.

  The impetus for Jourdan’s charitable work was almost always a personal encounter, but once he started fund-raising, he was intensely, thoroughly logical. The point was to generate as much money as possible and to get those funds to the organizations that would make the best use of the money. He kept the overhead for his own nonprofit at zero. By the time he was thirteen or fourteen, Jourdan was scrutinizing financial disclosure forms as he weighed various organizations interested in his benefit concerts. He grilled the organizations on how they planned to use the money they received; he has a pet peeve about charitable organizations with bloat.

  He used the media, too, to his benefit. He was often written up in magazines and newspapers and appeared on TV—all exposure that Jourdan believes amplified his philanthropic reach. “Those were all leverage for me when I was trying to recruit orchestras to work with me at no cost and all these other crazy asks I would make on people. I embraced the media because it gave me a microphone,” Jourdan said.

  By the time Jourdan was nineteen, his nonprofit had raised $4.7 million. That money had provided twelve children with brain surgeries, a thousand cochlear implants for children who could not hear, and hundreds of thousands of dollars in aid for multiple sclerosis research and services; it helped fund pediatric clinics in El Salvador and Ghana and a music therapy program at the University of Michigan’s C. S. Mott Children’s Hospital.