Mind's Eye - Health & Wellness - Atlanta Magazine
 
 

Mind's Eye

How Bernie Marcus and a Yale scientist are revolutionizing autism treatment

These articles originally appeared in our September 2013 issue.

Nine-month-old Ansley Brane is strapped into a car seat in a silent booth. Except for a green screen on the wall behind her, the booth is all black, fitted with a handful of video cameras. Ansley, who is wearing a headband with a white bow, has nothing to look at but a blinking monitor two feet in front of her. So it’s understandable that she’s now frowning and waving her arms unhappily. Suddenly, her mother’s face appears on the screen. Ansley locks eyes with her and lights up. Sitting in a soundproof booth in the same room, Natalie Brane grins back at her daughter on her own monitor. Meanwhile, on a bank of screens situated between the booths, two researchers watch mother and daughter make silly faces at each other. In the middle of one screen’s roving crosshairs, the infant’s brown eyes are enlarged like wondrous planets.

The researcher is paying close attention to Ansley’s eyes to see what happens when videos of a female actor playing caregiver and scenes of children at play replace her mother, whose eyes the infant continues to follow. When Mom disappears, Ansley’s interest and engagement with the monitor quickly drops off. At her console, the researcher shifts back and forth between projections of these varying images—mother and nonmother—for fifteen minutes. This simple exercise, which took place in a small room of the Marcus Autism Center—a three-story brick building off Briarcliff Road near Emory—holds the key to better diagnosing one of the most prevalent and vexing pediatric disorders on earth. The eyes of autistic children, it turns out, respond to the world in measurably different ways, and this can be seen long before other symptoms emerge. Even in infants.

The center’s visionary leader is a beaming polyglot psychologist named Ami Klin. His team is developing the eye-tracking technology, tested on Ansley Brane and numerous other infants and children, that could change the way we diagnose this disorder forever. The salient fact is as simple as it is profound: If children can be diagnosed earlier, autism’s negative effects on them can be treated sooner and substantially diminished as they grow up, making their lives far less challenging. The Marcus Center was recently recognized by the National Institutes of Health as one of the top three autism facilities in the United States, a distinction made possible by Klin’s surprising move here from Yale two and a half years ago, bringing with him eye-tracking—the tool that could change everything. Today the center works with 5,700 children a year, diagnosing and helping many learn the critical communication and socialization skills
they lack.

Bernie Marcus, founder and namesake of the center, proudly says that the research Klin and his team are doing “will have far-reaching results for kids around the world.” But getting Klin to Atlanta was not as easy as many things are for the man who cofounded the Home Depot. Marcus had to sell him on facilities, financial resources, the medical community, even the city itself. It finally got to the point that Marcus told Klin he’d be “a schmuck” if he didn’t come.

Some twenty-five years ago, Marcus had an employee whose young child suffered from a strange condition: unsmiling, virtually mute, with little interest in other children or typical play. Doctors didn’t know what to do, nor did the child’s mother. Marcus had never seen anything like it, but he set about trying to help. “I lived vicariously through her,” he says. “She opened up this world to me. It was a serious problem, and nobody had looked into it.”

The term autism, sometimes described as a “social intuition disorder,” was used as early as the 1940s, but it was not included as its own category in the Diagnostic and Statistical Manual of Mental Disorders until 1980. Less than a decade later, when Marcus finally learned about it, autism still received little attention or advocacy. Marcus was in his sixties then, and worth millions due to the success of the decade-old Home Depot. Shocked that local hospitals didn’t have autism programs, he cobbled together the Marcus Developmental Resource Center, which opened in 1991.

“We got an affiliation with Emory University, hired two child psychologists, and off we went,” says Marcus, now eighty-four. The early years weren’t easy. “I was basically carrying this thing by myself,” he says. “I didn’t have any help from the city, state, or federal government. I was ready to throw in the towel. But parents would put their arms around me and cry about how I’d saved their lives and saved their children. I couldn’t back off.” Over the next two decades, Marcus would invest tens of millions of his money into the center. But its first home was a clutter of trailers at the edge of Emory. Inside, a few overwhelmed psychologists tended to children with a variety of developmental issues—not just autism—teaching them how to better communicate with and understand an often bewildering world.

Even as the center moved to a small building and then a bigger one off Briarcliff in 2003, and the waiting list ballooned to nearly 3,000 children, it remained hard for Marcus to convince philanthropists that autism was a crucial issue. Using the platform the Home Depot had afforded him, he pushed this fact: While cancer affects fewer than one in every 330 children and teens in the United States, as many as one in eighty-eight children have autism. In Georgia: one in eighty-four. “Who would turn their back on a child with cancer?” says Marcus. “And yet nobody was caring about autism.”

That began to change locally in 2008. Doug Hertz, CEO of United Distributors—a major beverage transporter based in Atlanta—was then the chair of Children’s Healthcare of Atlanta’s board of trustees. He was also an old friend of Marcus’s and a longtime Marcus Foundation trustee. “I felt that as Children’s continued to gain national prominence, we couldn’t call ourselves a world-class pediatric healthcare system without addressing autism in some meaningful way,” says Hertz.

Marcus talked to Hertz about a partnership. With more than 340,000 patients who came from every Georgia county, Children’s investment could make the Marcus Center far less reliant on individual donors and grants. It could also connect a number of groups doing work related to autism—from genetics to neurology to gastroenterology—in the service of a single comprehensive model of care. “Also,” says Hertz, “there was this never-ending waiting list at Marcus, and we could reduce it."

In August of 2008, Children’s took over, which meant that Bernie Marcus could scale back his personal contributions from enormous to slightly less so. (Over the years, he has given more than $54 million to the center, and another $26 million to a research and advocacy organization called Autism Speaks.) Children’s changed the facility’s name to the Marcus Autism Center, reflecting the central focus the disorder would now have there, and began reducing operating losses, which were in the millions.

By 2009 Marcus, now seven years retired, knew the center that bore his name was doing vital work. Most notably, it was offering an early intervention treatment program for children up to eight years old, and three out of every four families saw tangible results. Still used today, it involves methods such as direct instruction of the child (face-to-face, repetitive drilling: “Put your finger on the frog”), multisensory techniques (using nonverbal reasoning skills: Place a picture next to a word), discrete trial instruction (reward-oriented: “Nice job handing me the nickel; have a treat!”), and incidental teaching (child-initiated: “Oh, you said you want to open the box?”).

While fantastic for families who can afford it (intensive behavioral treatments can cost between $40,000 and $60,000 a year), this system is woefully inadequate in a world with high rates of autism: A psychologist with a Ph.D. cannot possibly meet each week with every affected child. So Marcus wasn’t satisfied. And on top of that, his center still did very little research. “That was frustrating,” he says. “If you don’t have specimens, you can’t come up with better treatments. But there was no place in the U.S. that treated as many people as we do.” By then, they were treating around 3,000 children a year.

One of the holy grails of autism research is to decrease the average age of diagnosis, currently four and a half years. If a child is identified as high risk by age two, before significant disabilities set in, the course of the disorder can be dramatically changed through early intervention. The American Academy of Pediatrics now recommends that pediatricians screen every child in the U.S. for autism at eighteen and twenty-four months. But this has put doctors in a quandary, since the standard diagnostic tools remain crude. “There is no gold-standard lab test or X-ray that can diagnose autism,” says Barbara Stoll, chair of the department of pediatrics at Emory University School of Medicine as well as senior vice president of Children’s Healthcare and a Marcus Center board member. You can’t ask an infant questions or hope that latent behaviors reveal themselves. You’ve got to rely on other measures, which take into account how babies learn and communicate.

So in the summer of 2009, flush with resources, the Marcus Center pursued a medical director who could blaze a trail into this frontier.

Meanwhile, in New Haven, Connecticut, Dr. Ami Klin was facing the opposite problem: He had a diagnostic tool and highly trained personnel, but little backing from Yale University, where he taught in the psychology department and had few patients to see. Born in Brazil to Holocaust survivors, Klin went to college in Israel and France and then worked as a motorcycle courier in England to pay off school debt. While getting his Ph.D. in psychology at the University of London, he chose a unique off-campus living situation—an apartment complex for psychologically impaired people—“to taste real life,” he says. Margaret Thatcher had just shut down long-stay mental hospitals, and many of the adults in his residential unit, where he lived for three years, had autism. Klin befriended them: “I realized the things that bring us together are not entirely dependent on cognitive abilities.” He was soon recruited to Yale, ultimately receiving tenure and directing the school’s first autism center.

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  1. Angela Kuykendoll posted on 09/03/2013 10:27 AM
    Thank you for the article "Mind's Eye" by Charles Bethea. As a grandmother of an autistic grandson, I cannot express how important it is for those in the autism community to have great understanding in the entire community. From realizing that the child who is "acting out" may be autistic and not a brat to realizing how this financially impacts our state there is much Mr. Bethea has drawn to the communities attention. I applaud both he and the magazine for this article.

    Sincere thanks.
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