The Prodigy's Cousin (27 page)

But that doesn't mean it's not worth exploring. The debate over the nature of autism is important and should be approached with great sensitivity, but you don't need to believe that autism should be “cured” to appreciate the power of studying those who are well from a research perspective. The scientists who discovered that
certain SLC30A8 mutations may lower type 2 diabetes risk, for example, challenged the conventional wisdom about that gene, which had previously been associated with an
increased
diabetes risk. The first time the team submitted their findings for publication, the paper was rejected. “
It was so at odds with the previous knowledge of how this gene had worked,” Jason Flannick, the lead author of the SLC30A8 study, said. “This is a totally new hypothesis that has very strong genetic data behind it, but it's definitely not the end of the
story; it's the start of what will be a very long period of work.” This sort of insight seems like something that could be quite helpful to autists, autists' families, and scientists. As the prominent autism researcher Geraldine Dawson put it in the general context of autism genetics studies:

We're not really trying to cure autism in the sense that we think autism is something that you absolutely want to get rid of, because autism actually comes with gifts and unique differences that I think are really special and very important to have as part of our human society. Really, what we want to be able to do is to help each individual with autism reach their full potential—to be able to communicate and to be able to use the unique talents and gifts that they have and also not to suffer from some of the medical comorbidities that go along with autism.

To this end, the prodigies have something important in common with Erich Fuchs and Stephen Crohn. Given their family histories, the prodigies could be considered at high risk for autism, just as Erich and Stephen were at high risk for HIV,
and
unlike the typically developing siblings of autists, the prodigies all demonstrate some truly extreme autism-linked behaviors and cognitive abilities. But just like Erich and Stephen, who never contracted HIV, the prodigies don't have the deficits associated with autism.

From this perspective, maybe the prodigies aren't just a marvelous curiosity. Maybe they're a potential Rosetta stone for some variations of autism. And as for autism's complexity and heterogeneity, there's at least one prominent organization where those issues are high on the research agenda.

Bruce Cuthbert has gray hair, blue eyes, and an oval face. When he smiles, which he does often, he resembles a midwestern news broadcaster.

His office is on the eighth floor of the Neuroscience Center in Rockville, Maryland, a building that houses the National Institute of Mental Health's headquarters. The space is nondescript: cream walls, gray overhead bins, books lining the top of the shelves. It hardly looks like the staging ground for a mental health revolution. But it's from this office that Cuthbert is leading the Research Domain Criteria project, an effort more commonly known as RDoC—NIMH's answer to the mismatch between symptoms-based
DSM-5
diagnoses and the underlying biological reality.

This effort leaped into the public spotlight in 2013 when Thomas Insel, then the director of NIMH, slammed the new edition of the
DSM
as little more than a dictionary.
It described groups of symptoms, he said, but didn't actually
diagnose
anything; the symptom clusters weren't rooted in the underlying biology. Using symptoms to diagnose mental illnesses, he argued, was like diagnosing diseases of the body based on the type of chest pain or severity of fever. “
As long as the research community takes the D.S.M. to be a bible, we'll never make progress,” Insel told the
New York Times
.

It was a sentiment that had been brewing for years. From Cuthbert's perspective, there had always been something a bit strange about the
DSM
categories. When the third edition, a revision aimed at establishing more reliable diagnoses for a field that was struggling with consistency, came out in 1980, Cuthbert, who was then a psychology researcher with the U.S. Army Medical Services Corps, recalls being flummoxed. “
It was all like a magical mystery tour to us,” Cuthbert recalled. “What is all this stuff? Where did they get all this stuff? To me, they never really did make all that much sense from a natural science point of view.”

But when Cuthbert began his first stint at NIMH in 1998 (he was the chief of the Adult Psychopathology and Prevention Research Branch from 1999 to 2005), he realized that many researchers didn't share his skepticism about the
DSM
categories. These scientists treated them as hard-and-fast diagnoses that described distinct disorders.

Strict adherence to
DSM
diagnoses was problematic for research; scientists grouped their subjects according to these categories despite growing evidence that the clusters of symptoms didn't map onto any single underlying disorder.

It was even more problematic for attempts to identify treatments, the effectiveness of which varied widely among individuals who all theoretically had the same disorder. Pharmaceutical development in particular suffered. Drug development can proceed only if scientists know what they're trying to target; with
DSM
disorders' underlying biology murky, pursuing pharmaceuticals was a fool's errand. A number of companies pulled back from developing psychiatric drugs.

NIMH scientists eventually set out to tackle the problem. In NIMH's 2008 strategic plan, the organization declared its intent to develop a new classification system for brain disorders that took into account behaviors
and
biology; that's RDoC.

RDoC casts aside current diagnoses like autism and schizophrenia. Instead of using these recognized—but, for research purposes, confusing—terms, RDoC breaks brain functioning down into broad constructs like “negative valence systems,” which includes fear and anxiety, and “cognitive systems,” which includes attention and language. These categories cut across current diagnoses in an effort to get at the underlying mechanisms that result in brain disorders and, from there, behavioral abnormalities.

The idea is that by untangling the roots of brain disorders, scientists can develop personalized, targeted treatments. Perhaps with a better understanding of the conditions we have long known as autism or schizophrenia, depression or obsessive-compulsive disorder, scientists can open up the door to improved behavioral, pharmaceutical, and even genetic treatments.

“We have treatments, but they're not nearly as precise as we want,” Cuthbert said. “So if you really want to do a better job of diagnosing and treating people, it's clear that we are going to have to face up to the heterogeneity that exists with all of our disorders and
move in this precision medicine direction, and that's really what this Research Domain Criteria thing is all about.”

At this point, the minds behind RDoC haven't explicitly set out to emphasize the study of those at high risk for a particular condition but not actually affected by it.
But they are attempting to broaden the range of behaviors researchers study beyond those that would qualify for a formal diagnosis. The idea is to acknowledge that many traits, like anxiety, exist on a continuum. There is no clean on-off switch demarcating the point that distinguishes those who have an anxiety disorder from those who do not. But because scientists often study only subjects who qualify for a diagnosis, there is little research on those whose symptoms put them on, but not quite over, the diagnostic threshold.

It's a start, but science still has a long way to go before we can unravel terms like “autism” and “schizophrenia” to see what really lies beneath. In the meantime, the possibility of approaching autism from a novel angle beckons.
After all, scientists have already made some headway toward identifying a mutation that seems to result in lower levels of anxiety and enhanced fear extinction (the ability to forget a learned fear response). Child prodigies, a group of individuals who seem to be at high risk for autism but who don't have the typical social and communication difficulties, seem like another particularly promising starting point.

The prodigy genetics research is ongoing. The Ohio State team still needs to pin down the chromosome 1 mutation that prodigies and autists seem to share. Guy Rouleau and the Canadian team are hunting for a de novo mutation that contributes to prodigious talent. It's possible that neither team will find anything of interest to autism researchers, but it's also possible that they will.

It's only by actually studying child prodigies, a group long relegated to the research sidelines, that we'll find out. If the connection with autism bears out, if prodigies really can point the way toward an improved understanding of autism, maybe child prodigies aren't so much a mystery anymore. Maybe they're the beginning of an answer.

What happens when child prodigies grow up?

There are plenty of popular reports—and conjectures—about the fate of child prodigies. Some assume that, like Mozart, the prodigies' spectacular early achievements destine them for the pinnacle of their professions. Others buy into the “early ripe, early rot” perspective. The idea there is that the prodigies, besieged by pushy parents and excessively exposed to the media, lacking friends their own age or the grounding to weather the natural ups and downs of a long career, will break down or fade into obscurity.

The real answer is that no one knows.
Just as autism in adulthood is relatively under-studied, so, too, are child prodigies' grown-up years.

What little can be gleaned from the academic literature suggests that there's a
wide range of outcomes for prodigies (just as there is for everyone else), and that most fall between the extremes of global stardom and the sort of failure predicted by early ripe, early rot.
A small study of eight chess prodigies, for example, found that most became eminent chess players and one became a world champion.
David Feldman has lost touch with two of the six prodigies he studied closely. The other four, though, have mostly carved out careers within their original fields of interest. The music prodigy graduated from Juilliard and is a solo violinist. The writing prodigy graduated from Harvard
and writes about music professionally. One of the chess prodigies has become an attorney, and the jack-of-all-trades prodigy is a musician and a freelance computer consultant. There's no one in his group of six who has achieved a household-name level of acclaim, but in fields as competitive as music and writing (or as relatively obscure as chess), what are the chances that there would be?

Child prodigies certainly have some advantages as they transition into adulthood. They have extreme work ethics and the confidence of having already developed a noteworthy ability. They have often found a measure of fame that may open up other opportunities.

Children who have already achieved much also face some unique challenges, though. The media attention may dwindle, confusing adolescents who have become accustomed to constant praise.
Pursuits that once came naturally may prove more difficult, or the prodigies may find that their interests no longer align with conventional pictures of success.
Critics can seem almost gleeful when a prodigy falls off his or her childhood pedestal and into something closer to normality.

Most of the prodigies described in this book are still quite young. Some are still pursuing those passions that first seized them during childhood; others have moved on to other interests. Some will have outstanding adult careers that seem to fulfill the promise of their early abilities. Some may try for success and fail. Others will opt for quieter lives, different paths, and their own unique adventures.

But what the child prodigies make of their talents is only one aspect of their lives. After all, child prodigies aren't just highly accomplished individuals. They're funny and charming and driven, and they have incredibly generous hearts. It's been an amazing privilege to get to know these kids, spend time with their families, and offer a glimpse into their world.

For now, the best anyone can say with certainty is that these children are neither doomed to fail nor predestined for adult success. Here's an update on their lives since we left off with their stories.

Garrett James

The tiny Louisiana strummer is still a wholehearted musician. He has released several CDs and tours frequently.

Greg Grossman

The Greg Grossman cooking cyclone has never slowed.

When Greg was twenty, he became the executive chef of Beautique, a new, high-end Southampton restaurant and the sister location to a popular Manhattan eatery. On the restaurant's busiest nights, his team served four hundred to five hundred people.

He's a partner and co-founder of Kettlebell Kitchen, an organization that delivers Paleo meals to more than two hundred gyms across New York and New Jersey. It has expanded rapidly and delivers more than fifteen thousand meals per week.

Greg and his partners have two new restaurants in development in Manhattan—a small plates Mediterranean restaurant planned for Midtown and an East Village microbrewery. Both are scheduled to open shortly.

He still loves exploring ingredients, cooking products, and new techniques, and he of course loves eating. He can't get enough of the challenge of running a kitchen and the close camaraderie that emerges with co-workers engaged in a true team effort.

“It's a different battle every day. It's constantly changing, and you have to stay on your feet,” Greg said. “It's very exciting, and it never really gets old.”

Jonathan Russell

Jonathan is studying music composition at NYU. Since he began college, he's released a CD of original compositions and has scored several new projects, including a feature film and a Web TV show for kids. He still performs in Central Park.

“I have more fun composing than performing,” Jonathan said. “When I compose, I can kind of just get into my own head and enjoy myself without having to worry about anything, and I certainly have stamina to do that a lot longer. I'll sit down, and I'll write for six hours at a time. I can't perform for six hours, nonstop—it's just too much.”

Lauren Voiers

Lauren thrived as a professional artist for the first couple of years after she finished high school. She jaunted around the country doing group and solo exhibitions, made the media rounds, and completed multiple commissioned works. One of her paintings,
Peace & Harmony,
was made into a sculpture and installed in Liverpool in honor of what would have been John Lennon's seventieth birthday.

She put her art career on pause when she parted ways with her agent. For several years, Lauren stopped painting.

She has since enrolled at Santa Monica College, where she's studying fine art. She's resumed painting and often creates dramatic, bold-colored pieces; she's experimenting with pen and pencil drawings and has a burgeoning interest in photography.

Richard Wawro

Richard's legacy lives on through his artwork and through his family. One of Mike's daughters recently redid Richard's Web site as a birthday gift to her father. Mike still hears from people through the Web site who own Richard's artwork and talk about how important and inspiring it is to them, and he receives messages from people who are deeply moved by Richard's story.

Jacob Barnett

Jacob reveled in every aspect of college. He loved his classes. He liked getting to know the other students and even tutored some of them: the
only prerequisite was that they bring spoons to partake in the giant tubs of peanut butter he brought along to snack on during study sessions.

After his freshman year, he worked as a paid research assistant in quantum physics at IUPUI as part of an undergraduate program; during this time, he tackled a previously unsolved math problem.
Afterward, he and his mentor coauthored a paper that was published in a noted, peer-reviewed physics journal. It's titled “Origin of Maximal Symmetry Breaking in Even PT-Symmetric Lattices.”

At fifteen, he enrolled at the Perimeter Institute for Theoretical Physics in Ontario. The Barnetts sold their home in Indiana and moved to Canada, and Jacob is now a Ph.D. candidate. His TEDxTeen talk, “Forget What You Know,” in which he urges listeners to stop learning and start thinking and creating, has been viewed more than six million times.

“I think he is just happy being him. I don't know if in the future we're gonna make all of the decisions that everybody expects us to make,” his mother, Kristine, said. “I think that the compass that's always gonna drive Jacob is just, is he doing what he loves to do? Then we'll be doing that thing.”

Jourdan Urbach

Jourdan's last two years at Yale had the same frenzied pace that marked his years growing up on Long Island. He was selected to score a short film at the Columbia University Film Festival. He built and ran a recording studio, performed as part of a Haiti benefit concert, and served as a United Nations Art for Peace goodwill ambassador. He found out that
the paper he had coauthored with Joanne on child prodigies would be published while he was at the shooting range with the Yale Pistol & Rifle Club.

At twenty, he received a Jefferson Award for Outstanding Service for his philanthropic work and a Tribeca Disruptive Innovation Award alongside Jack Dorsey, Justin Bieber, and others.

He graduated from Yale a year early (in part through credit for high school AP classes; in part by stuffing a large number of courses into a single semester) and began a one-year stint as the national director of the Jefferson Awards.

Jourdan still plays the violin, but these days it's just for fun (or fund-raising).

Ocho, the eight-second social video platform that he co-founded, received $1.65 million in seed funding by the end of 2014 from a group of investors that included Mark Cuban, the billionaire investor of
Shark Tank
fame.

“I wanted to build products that had a mandate to exist, and I think Ocho has a mandate to exist. There needs to be a way to share your life with people through videos, not just through photos,” Jourdan said. “I won't work on products where I need to win on marketing. That's my nonprofit background coming into it. I feel it's immoral. I think it's immoral to win on marketing in the nonprofit world, and I think that it is wrong and probably dumb to work for a company that wins based on marketing, even if it's a for-profit.”

Josh and Zac Tiessen

Josh and Zac Tiessen are both blossoming professionally.

Josh was named one of Canada's Top 20 Under 20 for his art and charity work.
By the time he was nineteen, his gallery included paintings priced over C$17,000. He recently sold a painting for over C$23,000. He exhibits his work frequently, and his painting
Ahoy Sleeper,
a haunting depiction of a diver emerging from the water at night, won the Creative Achievement Award at a selective International Guild of Realism exhibition in Charleston. As his mother, Julie, noted, “His only challenge as a teenager at these events has been booking into hotels, renting cars, and being underage at his own wine and cheese exhibition openings!”

Zac has composed more than thirty original songs; he put four of
those songs on his first solo CD, which he released when he was seventeen. His YouTube channel has been steadily growing, and he's received a number of endorsements from music equipment companies. A few months after his CD release, he opened a concert for Animals as Leaders in Toronto with “
a blistering three song set.”

He completed a specialist certificate in guitar skills through the Berklee College of Music online program. Zac had hoped to apply for the full-time program at Berklee, but his concussion specialist nixed that idea. Instead, Zac bought the textbooks used in the Berklee bachelor's program and worked his way through them independently. He's now studying master's level jazz theory.
At eighteen, he was written up in
Guitar World
for his work on the eight-string guitar;
the magazine also recently spotlighted one of his playthroughs.

Personally, the road has been much more difficult for the Tiessens. The boys' Lyme symptoms worsened over time. Josh noticed some mental fogginess, flu-like fatigue, and physical discomfort. Zac, too, experienced some difficulty concentrating along with fatigue, mood swings, and insomnia, though in his case it was less clear whether his symptoms stemmed from Lyme or his concussions.

The entire Tiessen family was treated for chronic Lyme disease at the Sponaugle Wellness Institute in Florida. The doctors there also discovered signs of exposure to mold and industrial toxins in their blood. Their friends and family rallied around their cause and raised more than $250,000 to help pay for the family's care. Even in the midst of the temporary relocation to Florida and ongoing medical treatment, Zac stayed up all night to finish a music video and opened for a progressive band in Orlando; Josh continued to paint several hours a day.

Autumn de Forest

Autumn travels frequently these days—New Orleans, Orlando, Scottsdale, Minneapolis, San Antonio, Boston—discussing her work with art collectors. She recently visited Savoy Elementary School in Washington, D.C., in connection with Turnaround Arts, an organization that provides arts education programs to low-performing schools.

She's still a media darling, was recently featured on a Times Square billboard in New York as part of P.S. from Aéropostale's “epic kids” campaign, and donated a painting for a world hunger charity fund-raiser.

And she still loves the way that painting lets her express herself and her imagination. “
I've never taken lessons; it's all come from me,” Autumn said during a Disney Citizen Kid spot. “I just go for it. I let my heart go.”

Ping Lian Yeak

Ping Lian continues to paint in Sydney. Rosa C. Martinez, the founder of Strokes of Genius, has helped him to secure representation at a Manhattan art gallery. His mother is working on a book about raising Ping Lian.

Alex and William

Lucie's children continue to thrive, and they continue to do so outside the spotlight.

Her older son, Alex, has completed fifth grade. He's a strong athlete, loves skiing, and recently took up gymnastics. He also enjoys music, especially (to Lucie's dismay) classic rock and heavy metal.

He's voraciously interested in the mechanics of how things work, and he's a Lego fanatic. He builds quickly, and he does it every day, often in the mornings before Lucie wakes up. He has exhibited some of his builds at Lego conventions.

All signs of his autism (other than his keen eye for detail) have disappeared. He's a happy-go-lucky kid. His latest report card, including the behavior report, was excellent. He's a popular student, participates in class discussions, and was chosen to speak at a school assembly based on his communication skills.