What Happens When They Grow Up

A win in Washington may lift their spirits, but a legislative victory won't really change much for the Boronats and others like them. Some kids have made dramatic progress after intensive physical and behavioral therapy; many others still struggle with basic activities. Often, when lower-functioning young people reach 18, their parents will establish legal guardianship to protect them. But no matter what level they've reached, many will need help for the rest of their lives. Most government-sponsored educational and therapeutic services stop at the age of 21, and there are few residential facilities and work programs geared to the needs of adults with autism. "Once they lose the education entitlement and become adults, it's like they fall off the face of the earth" as far as government services are concerned, says Lee Grossman, president and CEO of the Autism Society of America, a major national-advocacy group.

According to the Harvard School of Public Health, it can cost about $3.2 million to care for a person with autism over a lifetime. Caring for all persons with autism costs an estimated $35 billion per year, the same study says. Families with limited financial resources are particularly hard hit. Other chronic diseases like diabetes are covered by insurance. But parents of youngsters with autism "have to navigate a maze and, if they find providers, then they have to figure out how to pay for it," says Singer. Grossman's early wish for the Combating Autism Act was that it would address the dire needs of autistic adults, and he drafted 30 pages of service-related issues. But that part was never introduced because a consortium of activists working on the bill concluded, for the sake of political expediency, that the bill shouldn't try to take on too much. In this light, restraint seems especially critical now, when the Iraq war has siphoned off so much federal money. "It's like a forest fire running through science and it burns a lot of trees down," says Dan Geschwind, a UCLA neurogeneticist. However, advocacy groups vow that the moment the bill passes, government funding for adult services will become their next priority. Wright believes there is substantial congressional support for this, possibly from Sen. Hillary Clinton.

Moving through adolescence to adulthood is never easy, but autism transforms even the most routine activities into potential minefields. Recognizing the norms of teen behavior can be a Sisyphean task. Helen Motokane's daughter, Christine, 14, has Asperger's syndrome, a high-functioning form of the disorder. She struggles to fit in at her Los Angeles public school--and that means hiding parts of her true self. One secret: she loves Barbie. "She knows it's not cool to wear clothes with Barbie logos, so she tries to keep that at home," says Helen, who gently prods her daughter into developing more mature interests. "She says, 'You're trying to make me grow up, aren't you? You want me to do all these things right away.' I go, 'No, no, no.' I reassure her that we're not trying to push her." But an hour or two later, her mother says, Christine will ask, "Is it OK if I like Disney Princess even though other kids my age don't like it?"

Keri Bowers of Thousand Oaks, Calif., says her son, Taylor Cross, 17, seems perfectly normal at first. But sometimes he'll just blurt out what he's thinking without any internal censorship. Passing a stranger on the street, he might say, "You're in a wheelchair!" "When you're socially odd, people are afraid," Bowers says. "They want to get away from you and cross to the other side of the street." Not surprisingly, Taylor had no friends at all in the public school he attends until he began to meet other teens with autism--young people his mother describes as equally "quirky."

In one way, he's not quirky at all. "He's at-tracted to girls," Bowers says, "but he's shy. He doesn't really know how to talk to them." A few months ago, he asked out a girl from his school who does not have autism but who had been friendly to him. Bowers had a psychologist friend shadow the couple at the movies. "Taylor only spoke about subjects he was interested in," Bowers says. "He wouldn't do a reciprocal back-and-forth conversation on topics about her." Still, when Bowers later asked if he wanted to kiss the girl, Taylor surprised his mother with his sensitivity. "He said, 'Yes, but she's very religious and I would never do that'."

As young people with autism approach adulthood, some parents can't help but feel the huge gaps between their child's lives and others the same age. "It's very hard, especially in our competitive society where people strive for perfection," says Chantal Sicile-Kira, whose son, Jeremy, 17, can communicate only by pointing to letters on an alphabet board. The San Diego resident hosts "The Real World of Autism With Chantal" on the Autism One Radio Internet station and wrote "Adolescents on the Autism Spectrum" ( Penguin, 2006 ). Like many youngsters with autism, Jeremy finds new environments difficult. "If he walks into a new store," his mother says, "and there's horrendous fluorescent lighting, within 10 minutes I'll look down and he's starting to wet himself." Despite such challenges, Sicile-Kira plans to help Jeremy live on his own when he's an adult--perhaps rooming with another young person with autism.