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Comment on this article Inside Autism
People afflicted with autism live in their own worlds, but ongoing research and treatment programs at Yale have opened windows into this baffling and often devastating illness.
November 2002
by Bruce Fellman In a darkened laboratory at Yale, one man after another watches scenes from the gut-wrenching classic, Who’s Afraid of Virginia Woolf? But this is no simple day at the movies, for while the clips play on a video screen, each viewer’s eye movements are monitored by miniature cameras and a bank of computers that track what the person focuses on during the film. When Richard Burton and Elizabeth Taylor stop their on-screen battles long enough to engage in a fiery kiss, the tracking technology reveals that the typical viewer is riveted on the couple’s eyes. But not everyone fits this mold, and as Burton and Taylor embrace, another man’s gaze is shown to be elsewhere. He, it turns out, is intently watching a light switch. This particular viewer is no prude, embarrassed by a display of passion and seeking to avert his eyes. Rather, the man is autistic—afflicted by a mysterious and often devastating illness whose core symptom is an inability to connect with the rest of the human race. “Most of us come into this world primed to be experts on people, but there’s something fundamentally wrong with the way people with autism engage with others,” says Fred R. Volkmar, the director of a Yale-based endeavor aimed at finding out precisely where in the brain the problem lies and then crafting strategies to enable the autistic to live more normal lives.
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“We can make a big difference in the lives of the autistic.”
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The University has a long history of work with this disorder, which was first described in the medical literature in 1943 by Johns Hopkins child psychiatrist Leo Kanner and is characterized by failures in social development and language skills, as well as by the presence of odd, stereotyped behaviors and inflexibility. Yale’s involvement dates from the early 1950s, and because autism often becomes obvious by the time a youngster turns three, research and treatment programs here have, from the outset, been under the purview of the Child Study Center. The work began with the pioneering studies of pediatrician Sally Provence, and it has continued under the leadership of Edward Zigler, Donald Cohen, and, these days, Volkmar. In fact, some of the patients first seen as children by CSC clinicians remain, nearly 50 years later, under their care. In 1997 this effort garnered federal recognition when it was named a Collaborative Program of Excellence in Autism (CPEA) by the National Institutes of Health, and this year CPEA’s mission was further validated when it was awarded a $5 million, five-year grant through the highly competitive Studies to Advance Autism Research and Treatment (STAART) initiative sponsored by the NIH. (The latest round of funding comes on top of about $5 million that is already in place.) The STAART grant is supporting investigators observing infants to determine what goes wrong during brain development, as well as researchers sifting through genes to learn about the inheritance of autism, studying the strange speech patterns found in those with the disorder, even creating computer games that teach the autistic how to reconnect with the world. Last summer, Lawrence Scahill, a CPEA researcher and an associate professor at the School of Nursing, made international news when he and a team of colleagues from Yale and other universities announced the discovery of the first effective drug treatment for children bedeviled by a problem common among those with more severe autism. “These are kids who have daily, multiple, explosive outbursts—Richter scale tantrums,” says Scahill. “Sometimes their aggression is directed towards others; sometimes they injure themselves. We don’t know why this happens, but it can stop a classroom or a family in its tracks.” Clinicians, parents, and teachers attempting to quell these emotional earthquakes were stymied, for the available medications were either biochemical straitjackets or not strong enough to be effective. “Many of the drug studies had been little more than well-intentioned fishing expeditions,” says Scahill. But a comprehensive search of the medical literature led him to a newly available antipsychotic medication known as risperidone, a drug that acts on two key brain chemicals which play a key role in regulating movement and mood. This combination enabled the drug to work its benefits with a lesser degree of side effects. In 1999, Scahill and his team began an investigation of 101 autistic children, ages 5 to 17, with severe behavioral problems. The placebo-controlled trial lasted eight weeks, and the results, released in the August 1 edition of the New England Journal of Medicine, were called “landmark” by reviewers.
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“We can help these children by decreasing their aggressive behavior 50%.”
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“About 70 percent of the children taking risperidone improved,” says Scahill, “and the average amount of change in these kids was a 50 percent decrease in aggressive behavior. We didn’t really see a change in autism per se, and we don’t know whether this is a drug that children can take long-term. But we’re hoping that by being able to turn these behaviors down a notch, we can help these children become more available for other interventions.” Volkmar, a professor of child psychiatry, notes that the Scahill study exemplifies the CPEA approach. “Because of the work we’ve done and continue to do, we can make a big difference in the lives of the autistic,” he says, admitting that his optimism is of fairly recent vintage. “In the past, people with autism tended to do very poorly.” Autism, which is now considered one of a group of illnesses collectively known as pervasive developmental disorders, tends to run in families and affects about 1 in 1,000 people, some far more severely than others. There are approximately 70,000 people with full-blown autism in this country, and while a few are categorized as autistic savants—gifted with an extraordinary talent for, say, music, art, determining any day of the week throughout history, or, like the character played by Dustin Hoffman in the 1988 film Rain Man, counting cards—a majority of those with the disorder are mentally retarded. More than a third of them never speak. They were once considered to be both unteachable and unreachable, and frequently, being diagnosed as autistic was the first step on a grim road that led to institutionalization and a life spent rocking aimlessly in the back wards of mental hospitals. Doubly tragic, some psychiatrists during the 1950s and 1960s blamed autism on parental failure. Indeed, the suggestion that the disorder resulted from a lack of maternal warmth towards a child had people calling it the “refrigerator mother” syndrome. “There’s absolutely no evidence that mothers or fathers cause it,” says Volkmar. “And I’ve seen kids with autism in every educational, social, and economic situation, and on every continent except Antarctica. Autism is everywhere.” In the 1970s, researchers began to view autism as the result of brain development gone awry rather than a problem of parenting, and given what has been learned about the brain’s often remarkable ability to overcome damage, clinicians, teachers, and parents alike adopted a new way of working with the autistic. The strategy was called “early intervention,” and it involved identifying youngsters with the disorder as quickly as possible and then enrolling them in intensive training programs that would maximize their skills and teach them how to engage with the world. “Early intervention is clearly important,” notes Volkmar, citing Educating Children with Autism, a book-length study published last year by the National Academy of Sciences that documents the effectiveness of the strategy. “And the earlier you intervene, the better.” One reason Volkmar and his colleagues are watching people watch Who’s Afraid of Virginia Woolf? is to develop techniques that can be used to identify children with autism who are far too young to see such movies. The analysis of eye movements is emerging as a powerful screening technique—and it also provides a window through which researchers and parents alike can glimpse how the universe appears through an autistic lens.
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“Just making basic contact was difficult.”
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“Because we share a common background as human beings, we take it for granted that we all see a scene in the same way,” says Ami Klin, the Harris Associate Professor of Child Psychiatry and the director of the vision-tracking project. “But one of the most eye-opening features of this research is that the world can look very different from the viewpoint of another person, especially someone with autism.” Much of the impetus for this approach—and a good deal of the technological expertise—actually came from an undergraduate, Warren Jones, an art and engineering dual major who graduated in 1999 and developed the eye-tracking approach for his senior thesis. At the behest of his grandmother, Jones, now a CPEA research associate, had spent many of his summers working with kids with special needs, and when he came to Yale, he continued this endeavor by volunteering to teach art at Benhaven, a local school for children and adults with autism. “Many of them were non-verbal, so just making basic contact was difficult,” says Jones. “That got me interested in the nature of the communications breakdown in autism.” To better understand the disorder, he enrolled in Volkmar’s year-long seminar on autism, and in short order, Jones turned his engineering skills towards creating devices that would enable him to see what the autistic were seeing and, perhaps, break through the communications barrier. As it happened, Jones learned that much of the eye-tracking software and hardware had already been created by U.S. military researchers, and for his senior thesis, he adopted this technology—the tiny cameras are housed in a baseball cap worn by viewers—to begin examining rigorously a phenomenon that anyone who has ever known an autistic person quickly observes: People with autism rarely look anyone in the eye. Normal infants, almost as soon as they open their eyes after birth, instinctively focus on the human face, a familiar one in particular, and as children grow, their gaze will increasingly be directed to the eyes of other people. But a hallmark of autism is that neither the human face nor the eyes have any special allure. The two Virginia Woolf studies that have been completed to date make this starkly clear. The most recent paper, published in September in the Archives of General Psychiatry, compared 15 adolescent and young adult males who had autism with age-matched, non-autistic counterparts. Members of the latter group spent about two-thirds of their viewing time watching the eyes of the actors; by contrast, those with autism watched eyes less than 25 percent of the time. Instead, they focused more of their attention (41.2 percent) on the actors' mouths. The lack of eye contact has profound implications, says Klin. “This movie portrays socializing as a contact sport, but if you’re spending your time watching mouths, you’re missing most of the social action,” he notes. “When you’re not looking at a person’s eyes, social interactions—even something as basic as buying a candy bar or driving—become difficult or impossible.” Using images more appropriate for youngsters, CPEA scientist Katarzyna Chawarska, a clinician at the Child Study Center who earned her doctorate in psychology in 2000, has shown just how early this deficit emerges. As a postdoctoral researcher, Chawarska helped start a CSC clinic for children under 3. “We quickly got many, many referrals,” she says, explaining that a common reason parents cite for concern is a child’s difficulty in learning to talk and interact.
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“Autistic infants may pay more attention to objects than to faces and eyes.”
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Chawarska was interested in how infants and young children learn to read eye movements as a source of information about other people, and although she now had plenty of research subjects, she needed a new way to watch them watch the world. “Babies had difficulty wearing the baseball cap,” she laughs. But a hat-free method to monitor eye movements was soon developed, and Chawarska learned how to visually engage the youngsters, even those who were severely impaired. In her experiments, an adult appears on a video screen. The child looks as the adult’s computer-generated eyes move either to the right or left. This tendency to follow another person’s eye movements is called “gaze monitoring,” says Chawarska. “It has a huge survival value, and we’re probably born with a rudimentary form of it. But the real skill doesn’t emerge until a child is more than a year old, and it then takes a couple of years to perfect.” As each infant seated in Chawarska’s lab watches the eyes move, another image—Barney, Mickey Mouse, or some other popular icon—pops up on the video screen. Sometimes it appears in the space towards which the eyes have turned; at other times, it appears in the opposite spot. There’s no predictable pattern, and the eyes may occasionally lead the infant astray. By using a hidden eye-tracking camera, Chawarska can time how long it takes the child to lock on to the icon, and she has found that while children with autism are physically able to follow the lead of the eyes, they are much faster at locating the icons than normal children. No one knows how they accomplish this task, but it is possible that even at this early an age, autistic children are simply paying more attention to objects than faces and eyes. CPEA researcher Robert Schultz has a good idea why this happens, and his insights may point the way towards an innovative method to help the autistic. “We have a tool called functional magnetic resonance imaging (fMRI) that enables us to see the brain at work,” says Schultz, a neurobiologist. A typical MRI shows the body’s soft tissues—organs, muscles, tendons, and the like—while fMRI allows researchers to view blood flow. The theory is that since activity in, say, the brain requires fuel, an increase or decrease in activity will be reflected in a change in blood flow patterns. Using this technique, researchers have built maps of the brain as it gets down to business, and what they have found is that the human brain has a special area set aside for face recognition. Known as the fusiform gyrus, this finger-sized region on the underside of the temporal lobes typically shows red—a sign of high blood flow—in fMRI studies of normal individuals when they’re given face recognition tasks. But when Schultz used fMRI to watch people with autism do the same job, something telling—but, given what is known about the way the autistic view the world, hardly surprising—was revealed. “The fMRI images showed a distinct underactivation in the fusiform gyrus among people with autism, and the more severely disabled they were, the less activity there was in the fusiform,” says Schultz. “But when they were looking at faces, what actually lit up more was the area involved in the recognition of objects.”
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“Why faces have no special status to the brains of people with autism is a mystery.”
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Why the face, in the brain of an autistic person, has lost its special status is a mystery, but acting on the possibility that the lack of fusiform activity is more effect than cause, Schultz and Oberlin College researcher James Tanaka have developed a way to change matters at the behavioral and, they hope, brain level. “Kids with autism are drawn to computers, and many of them get very good at using programs and at surfing the Internet,” says Schultz. To capitalize on this inclination, the two scientists have created a suite of computer games called “Let’s Face It.” These involve a series of challenges designed to increase interest in faces and then improve the ability of autistic children to “understand non-verbal communication,” says Schultz, describing a six-month study that will soon get underway with a group of 65 kids. “Training programs for the autistic are very expensive,” he notes, “but if these games work, we can achieve a significant result—making face recognition as automatic as possible—much cheaper.” Schultz suspects that success might even result in changes in fusiform activity, but he has no illusions about permanently altering the core problem. “What we’re attempting to do is compensatory—teaching skills that work around a deficit,” he says. Still, given what has been the lot of people with autism, the availability of re-engagement strategies is a remarkable development. “We don’t yet have a cure,” says Fred Volkmar. “But this is a time of great hope.”  |
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