Understanding Autism

Russell Rollens's life was off to a strong start nine years ago. Gestation and delivery went smoothly, and he hit all the early-childhood milestones right on schedule. Snapshots from his 1st birthday show him beaming as he's serenaded by waitresses in a Sacramento, Calif., Spaghetti Restaurant. But Russell's grandparents noticed he was less responsive when they visited not long afterward, and at 18 months things got really worrisome. He took up screaming instead of sleeping at night, and almost any sensory stimulation, even the touch of clothing against his skin, seemed to upset him. Russell's mother, Janna, remembers carrying him upstairs for a bath one night when he was 20 months old. When she called him her baby boy, he said, "I not a baby--I a big boy!" It was the last full sentence he ever spoke.

In the years since, Janna and her husband, Rik, have tried everything short of witchcraft to get their child back. Russell follows a special diet and takes dozens of supplements each day. He's had speech therapy and behavioral therapy and made his way into special-ed classes at a local elementary school. His parents are thrilled by his progress--"Any little improvement is a victory," Janna says. But drop in as Russell gets home from school, and you see what the family is up against. Pushing the door open, he flaps his arms and makes a guttural sound before accepting a hug from each parent. He doesn't seem to notice the stranger in the room until his mom urges him to say hello. He honors the request, yet his clear blue eyes reveal no hint of engagement. "He tests in the normal range for intelligence," his dad says. "But he can't tell me how his day was, or what hurts."

People like Russell are not as rare as you'd think. Autism stalks every sector of society, and its recognized incidence is exploding. In California, the number of kids receiving state services for autistic disorders has nearly quadrupled since 1987, rising 15 percent in the past three months alone. Nationally, the demand for such services rose by 556 percent during the '90s. Some experts see a growing epidemic in these numbers, while others believe they reflect new awareness of an existing problem. Either way, autism is now thought to affect one person in 500, making it more common than Down syndrome or childhood cancer. "This is not a rare disorder," says Dr. Marie Bristol Power of the National Institute of Child Health and Human Development (NICHD). "It's a pressing public-health problem."

And a profound mystery. Nearly six decades after autism was first formally recognized, the big questions--What causes it? Can it be prevented or cured?--are still wide open. But the pace of discovery is accelerating. Scientists are gaining tantalizing insights into the autistic mind, with its odd capacity for genius as well as detachment. And though the suspected causes range from genetic mutations to viruses and toxic chemicals, we now know it's a brain-based developmental disorder and not a result of poor parenting (accepted wisdom as recently as the 1970s). The condition may never be eradicated, but science is making autistic life more livable, and enriching our whole understanding of the mind.

Until fairly recently, neuroscientists thought of autism as a single, utterly debilitating condition. Like Russell, people with the classic form of the condition lack normal language ability, and they seem devoid of social impulses. A classically autistic child may tug on someone's arm to get a need met, but he (four out of five sufferers are male) won't spontaneously play peekaboo or share his delight in a toy. Nor will he engage in pretend play, using a banana, say, as a pistol or a telephone. What he will do is fixate on a pet interest--doorknobs, for instance, or license plates--and resist any change in routine. A new route to the grocery store can spark a major tantrum. Three out of four classically autistic people are thought to be mentally retarded. A third suffer from epilepsy, and most end up in institutions by the age of 13. "It's like 'The Village of the Damned'," says Portia Iverson, cofounder of the activist group Cure Autism Now and mother of an autistic 8-year-old named Dov. "It's as if someone has stolen into your house during the night and left your child's bewildered body behind."

As it turns out, though, autism has more than one face. During the 1940s, a Viennese pediatrician named Hans Asperger described a series of young patients who were somewhat autistic but still capable of functioning at a fairly high level. These "little professors" had quick tongues and sharp minds. They might stand too close and speak in loud monotones, but they could hold forth eloquently on their pet inter-ests. Asperger's work went unread in the English-speaking world for several decades, but its rediscovery in the early 1980s started a revolution that is still unfolding. Experts now use terms like "Asperger disorder" and "pervasive development disorder" to describe mild variants of autism. And as the umbrella expands, more and more people are coming under it.