What Happens When They Grow Up; Teenagers and Young Adults Are the Emerging Face of Autism as the Disorder Continues to Challenge Science and Unite Determined Families
Kantrowitz, Barbara, Scelfo, Julie, Newsweek
Byline: Barbara Kantrowitz and Julie Scelfo (With Karen Springen and Mary Carmichael Graphic by Jessica Ramirez and Marc Bain)
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. …