Chicken and potatoes. Chicken and potatoes. Danny Boronat wants chicken and potatoes. He asks for it once, twice ... 10 times. In the kitchen of the family's suburban New Jersey home, Danny's mother, Loretta, chops garlic for spaghetti sauce. No chicken and potatoes, she tells Danny. We're having spaghetti. But Danny wants chicken and potatoes. Chicken and potatoes. His 12-year-old sister, Rosalinda, wanders in to remind her mother about upcoming basketball tryouts. His brother Alex, 22, grabs some tortilla chips and then leaves to check scores on ESPN. His other brother Matthew, 17, talks about an upcoming gig with his band. Danny seems not to notice any of this. "Mom," he asks in a monotone, "why can't we have chicken and potatoes?" If Danny were a toddler, his behavior would be nothing unusual. But Danny Boronat is 20 years old. "That's really what life with autism is like," says Loretta. "I have to keep laughing. Otherwise, I would cry."
Autism strikes in childhood, but as thousands of families like the Boronats have learned--and thousands more are destined to learn--autism is not simply a childhood disorder. Two decades into the surge of diagnoses that has made autism a major public health issue, a generation of teenagers and young adults is facing a new crisis: what happens next?
As daunting as that question may be, it's just the latest in the endless chain of challenges that is life for the dedicated parents of children with autism. Twenty years ago, they banded together--largely out of desperation--to raise awareness of a once rarely diagnosed, often overlooked disease. They are united by the frustration of dealing with a condition that has no known cause and no cure. They have lobbied passionately to get better education for their kids and more money for research into autism, a neurological disorder characterized by language problems, repetitive behaviors and difficulty with social interaction. At the same time, more sophisticated epidemiology has revealed the true magnitude of the problem. Autism is now estimated to affect from one in 500 to one in 166 children--or as many as 500,000 Americans under 21, most male. That includes individuals with a wide range of abilities--from socially awkward math whizzes to teens who aren't toilet trained--but who all fit on what scientists now consider a spectrum of autism disorders.
The culmination of much of this parental activism is the Combating Autism Act, which was pushed by a collection of advocacy groups like Cure Autism Now, led by Hollywood producer Jon Shestack and his wife, Portia Iverson; Autism Speaks, started by Bob Wright, CEO and chairman of NBC Universal, and the Deirdre Imus Environmental Center for Pediatric Oncology. The bill unanimously passed the U.S. Senate in August but was blocked in the House by Texas Republican Joe Barton, chair of the House Committee on Energy and Commerce. In a September meeting, Barton told autism activists that he would continue to oppose their legislation, which earmarks $945 million for research over the next five years, because it conflicted with his own proposal to reform the National Institutes of Health. As a result, autism advocates began inundating him with faxes and phone calls and lambasting him in the press. To advance the cause of research, radio host Don Imus joined in and pressured Barton on the air, calling the congressman, among other things, "a lying, fat little skunk from Texas."
Now that the Democrats have won the House, Barton will lose his chairmanship in January and NEWSWEEK has learned that he is attempting to pass a compromise version of the bill before then. If passed, the House bill would fund a new push for early diagnosis, which is critical to starting therapy as soon as possible. In a particular victory for parents, the legislation specifies that the research oversight committee should include at least one person with autism and a parent of a child with autism.
The House bill authorizes money for research into many questions, including whether environmental factors may trigger autism. One point of contention: the Senate bill mandated a specific amount of money for the NIH to research the role environmental factors might play in causing autism. But Barton resisted, and now the specificity about how much should be spent and where has been lost in the compromise version. Still, a Barton bill could come up for a vote as early as the first week in December and the legislation, says Alison Singer, the mother of a daughter with autism and an executive at the advocacy group Autism Speaks, "is probably the single most important thing that could happen besides the cure."
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.
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).
As knowledge about autism spread in the 1990s, families began to get more accurate diagnoses for children who might in the past have been labeled mentally retarded or emotionally disturbed, and the number of cases skyrocketed. Because of the Internet and extensive networking, parents around the country found allies and became powerful and articulate advocates. Even longtime autism researchers say families have really led the way. "Beyond raising awareness," says Dr. Thomas Insel, director of the National Institute of Mental Health, "families have become the real experts on this disorder. They have to figure out how to cope with a child who becomes explosive, disruptive, who could have a meltdown at any moment. They become highly skilled at knowing what helps."
Autism has set all these families on a unique journey and, while the road ahead is still unclear, they cherish small triumphs along the way. Grinker has a Ph.D. from Harvard and, in his community, many parents dream of sending their children to the Ivy League. He and his wife, Joyce, a psychiatrist, know that Isabel will never join them. But raising Isabel has its own rewards. Isabel's sister, Olivia, 13, is "like a third parent," says Grinker. The family judges Isabel not by the standards of others but by how far she has come. "When Isabel achieves something, I feel like we're a team, like we all did it, and I feel incredibly rewarded," he says. For now, that is enough.