What Happens When They Grow Up

Independent living is a major goal of many families and, with the help of therapy, thousands of youngsters who in earlier generations would have been consigned to institutions are now going to college and looking forward to a normal life with a job. But for every one who makes it, there are many more young people like Danny Boronat, who has come so far and yet still faces much uncertainty. Once unable to utter a sentence, Danny now reads at a second-grade level, competes in the Special Olympics and willingly takes on household chores like loading the dishwasher. But he also can spend hours playing with water. He picks obsessively at his cuticles, and sometimes cuts himself (his mother tries to hide any scissors in the house). He has no close friends. Next year he'll turn 21 and will no longer be eligible for the workshop where he does simple assembly-line work three days a week. After that? No one knows, not even his parents. "It's terrifying," says his mother, who started her own charity called DannysHouse to focus on adults.

A few states like California and Connecticut, newly aware of the crisis, have launched efforts to meet adult needs. But until programs are widely available, families are left to cobble together a patchwork of solutions--from informal day care to hourly caretakers to private residential programs. But these are stopgap measures. Parents worry that they will run out of money to pay for these services--and that they won't be around forever to arrange them for their children.

It's understandable that these parents would feel distraught. Many adults with autism require so much special care that it's hard to imagine anyone but a loving family member willing to provide it. "My wife and I are concerned about what's going to happen to our son when we pass on," says Lee Jorwic, whose son Christopher, 17, is unable to speak even though he's been in therapy since childhood. At 6 feet 4 inches and 290 pounds, Christopher is "our gentle giant," his father says. But because of his disabilities, even the most routine tasks require extraordinary preparations. Two years ago, for example, Christopher got an eye infection. He couldn't sit still long enough for the doctor to perform an exam so he had to go under anesthesia twice "just so the guy could look in his eye," his father says. Grossman says the Autism Society gets hundreds of calls every day from families like the Jorwics. "The most distressing, most disheartening, are from parents of older kids, parents who are at the end of life," he says. "They've been fighting this all their life, and they don't have a place for the kid after they die."

The natural successors to parents as caretakers would be siblings. Some families feel that's too much of a burden; others say that's a natural part of life in a family with autism. When one sibling has autism, the needs of so-called neurotypical children may seem to come second. Beth Eisman of Potomac, Md., recently sent her oldest daughter, Melanie, 18, off to college. Her goal for her younger daughter, Dana, 16, is more basic: independence. Dana's tantrums limited the family's participation in Melanie's school activities. "The old days were pretty bad," Eisman says. "Melanie often took the brunt of it." Now that Melanie is gone, Dana feels the loss. Eisman says Dana often goes into her sister's room and says, "I want Melanie."

Many families are sustained knowing that, by raising awareness of autism, they have already given their children the gift of a meaningful identity. "If this was 10 years ago, my daughter's classmates might say she's the one who talks to herself all the time and flaps her hands," says Roy Richard Grinker, an anthropologist at George Washington University and father of Isabel, 15. "But if you ask these kids in 2006 about Isabel, they say she's the one who plays the cello and who's smart about animals." Inspired by his daughter, Grinker explored autism in different cultures for his book "Unstrange Minds: Remapping the World of Autism" ( Basic Books, 2007 ). "The more peers of the same age group understand about autism, the more likely they are to be kind, caring and integrate them into community life."

Twenty years ago, that kind of acceptance was inconceivable. Autism was considered rare and few physicians understood it or were able to help. The disorder was first identified by Leo Kanner of Johns Hopkins in 1943. About the same time a German scientist, Hans Asperger, described a less severe form of the condition. But with the ascendancy of psychoanalysis in the postwar years, the predominant view was that autism was a psychological disorder caused by a lack of love from "refrigerator mothers," a term introduced by the controversial psychologist Bruno Bettelheim. In the 1970s, parents start-ed pushing back against this theory and encouraging researchers to look for neurological causes. It wasn't until 1980 that autism became an official clinical diagnosis, separate from childhood schizophrenia or retardation. Since that time, as scientists have learned more, they have broadened the diagnosis to include a spectrum of disabilities. Now, they are re-evaluting it even further, considering the idea that there may be multiple "autisms" (sidebar).