The Secrets of Autism

Monday, Apr. 29, 2002 By J. MADELEINE NASH

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Tommy Barrett is a dreamy-eyed fifth-grader who lives with his parents, twin brothers, two cats and a turtle in San Jose, Calif., the heart of Silicon Valley. He's an honor-roll student who likes math and science and video games. He's also a world-class expert on Animorph and Transformer toys. "They're like cars and trains and animals that transform into robots or humans--I love them!" he shouts exuberantly.

And that is sometimes a problem. For a time, in fact, Tommy's fascination with his toys was so strong that when they weren't around he would pretend to be the toys, transforming from a truck into a robot or morphing into a kitten. He would do this in the mall, in the school playground and even in the classroom. His teachers found this repetitive pantomime delightful but disturbing, as did his mother Pam.

By that point, there were other worrisome signs. Pam Barrett recalls that as a 3-year-old, Tommy was a fluent, even voluble talker, yet he could not seem to grasp that conversation had reciprocal rules, and, curiously, he avoided looking into other people's eyes. And although Tommy was obviously smart--he had learned to read by the time he was 4--he was so fidgety and unfocused that he was unable to participate in his kindergarten reading group.

When Tommy turned 8, his parents finally learned what was wrong. Their bright little boy, a psychiatrist informed them, had a mild form of autism known as Asperger syndrome. Despite the fact that children with Asperger's often respond well to therapy, the Barretts, at that moment, found the news almost unbearable.

That's because just two years earlier Pam and her husband Chris, operations manager of a software-design company, had learned that Tommy's twin brothers Jason and Danny were profoundly autistic. Seemingly normal at birth, the twins learned to say a few words before they spiraled into their secret world, quickly losing the abilities they had just started to gain. Instead of playing with toys, they broke them; instead of speaking, they emitted an eerie, high-pitched keening.

First Jason and Danny, now Tommy. Pam and Chris started to wonder about their children's possible exposure to toxic substances. They started scanning a lengthening roster of relatives, wondering how long autism had shadowed their family.

The anguish endured by Pam and Chris Barrett is all too familiar to tens of thousands of families across North America and other parts of the world. With a seeming suddenness, cases of autism and closely related disorders like Asperger's are exploding in number, and no one has a good explanation for it. While many experts believe the increase is a by-product of a recent broadening of diagnostic criteria, others are convinced that the surge is at least in part real and thereby cause for grave concern.

In the Barretts' home state of California, for instance, the number of autistic children seeking social services has more than quadrupled in the past 15 years, from fewer than 4,000 in 1987 to nearly 18,000 today. So common are cases of Asperger's in Silicon Valley, in fact, that Wired magazine coined a cyber-age term for the disorder, referring to its striking combination of intellectual ability and social cluelessness as the "geek syndrome." Wired went on to make a provocative if anecdotal case that autism and Asperger's were rising in Silicon Valley at a particularly alarming rate--and asked whether "math-and-tech genes" might be to blame (see box).

Yet the rise in autism and Asperger's is hardly confined to high-tech enclaves or to the children of computer programmers and software engineers. It occurs in every job category and socioeconomic class and in every state. "We're getting calls from school systems in rural Georgia," observes Sheila Wagner, director of the Autism Resource Center at Atlanta's Emory University. "People are saying, 'We never had any kids with autism before, and now we have 10! What's going on?'"

It's a good question. Not long ago, autism was assumed to be comparatively rare, affecting as few as 1 in 10,000 people. The latest studies, however, suggest that as many as 1 in 150 kids age 10 and younger may be affected by autism or a related disorder--a total of nearly 300,000 children in the U.S. alone. If you include adults, according to the Autism Society of America, more than a million people in the U.S. suffer from one of the autistic disorders (also known as pervasive developmental disorders or PDDs). The problem is five times as common as Down syndrome and three times as common as juvenile diabetes.

No wonder parents are besieging the offices of psychologists and psychiatrists in their search for remedies. No wonder school systems are adding special aides to help teachers cope. And no wonder public and private research institutions have launched collaborative initiatives aimed at deciphering the complex biology that produces such a dazzling range of disability.

In their urgent quest for answers, parents like the Barretts are provoking what promises to be a scientific revolution. In response to the concerns they are raising, money is finally flowing into autism research, a field that five years ago appeared to be stuck in the stagnant backwaters of neuroscience. Today dozens of scientists are racing to identify the genes linked to autism. Just last month, in a series of articles published by Molecular Psychiatry, scientists from the U.S., Britain, Italy and France reported that they are beginning to make significant progress.