FW: NEWSWEEK Nov. 27 06 What Happens When They Grow Up

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From another list, in case you missed this article... Date: Sun, 26 Nov 2006 17:19:32 -0800Subject: [GFCFKids] NEWSWEEK Nov. 27 06 What Happens When They Grow Up <http://www.msnbc.msn.com/id/15792805/site/newsweek/> What Happens When They Grow Up Teenagers and young adults are the emerging face of autism as the disordercontinues to challenge science and unite determined families. By

Barbara Kantrowitz and ScelfoNewsweek, Nov. 27, 2006 issue Chicken and potatoes. Chicken and potatoes. Danny Boronat wants chicken and potatoes. He asks for it once, twice ... 10 times. In the kitchen of thefamily's suburban New Jersey home, Danny's mother, Loretta, chops garlic for spaghetti sauce. No chicken and potatoes, she tells Danny. We're havingspaghetti. But Danny wants chicken and potatoes. Chicken and potatoes. His12-year-old sister, linda, wanders in to remind her mother aboutupcoming basketball tryouts. His brother , 22, grabs some tortilla chipsand then leaves to check scores on ESPN. His other brother , 17,talks about an upcoming gig with his band. Danny seems not to notice any ofthis. "Mom," he asks in a monotone, "why can't we have chicken andpotatoes?" 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 islike," says Loretta. "I have to keep laughing. Otherwise, I would cry."Autism strikes in childhood, but as thousands of families like the Boronatshave learned‹and thousands more are destined to learn‹autism is not simply a childhood disorder. Two decades into the surge of diagnoses that has madeautism a major public health issue, a generation of teenagers and youngadults is facing a new crisis: what happens next?As daunting as that question may be, it's just the latest in the endlesschain of challenges that is life for the dedicated parents of children withautism. 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 AutismAct, which was pushed by a collection of advocacy groups like Cure AutismNow, led by Hollywood producer Jon Shestack and his wife, Portia Iverson;Autism Speaks, started by Bob , CEO and chairman of NBC Universal, and the Deirdre Imus Environmental Center for Pediatric Oncology. The billunanimously 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 forresearch over the next five years, because it conflicted with his ownproposal to reform the National Institutes of Health. As a result, autismadvocates 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, includingwhether environmental factors may trigger autism. One point of contention:the Senate bill mandated a specific amount of money for the NIH to researchthe role environmental factors might play in causing autism. But Bartonresisted, and now the specificity about how much should be spent and wherehas been lost in the compromise version. Still, a Barton bill could come upfor a vote as early as the first week in December and the legislation, saysAlison Singer, the mother of a daughter with autism and an executive at theadvocacy group Autism Speaks, "is probably the single most important thingthat could happen besides the cure."A win in Washington may lift their spirits, but a

legislative victory won'treally change much for the Boronats and others like them. Some kids havemade 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 theyfall 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, amajor national-advocacy group.According to the Harvard School of Public Health, it can cost about

$3.2million to care for a person with autism over a lifetime. Caring for allpersons with autism costs an estimated $35 billion per year, the same studysays. Families with limited financial resources are particularly hard hit.Other chronic diseases like diabetes are covered by insurance. But parentsof youngsters with autism "have to navigate a maze and, if they findproviders, 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 ofservice-related issues. But that part was never introduced because aconsortium of activists working on the bill concluded, for the sake ofpolitical expediency, that the bill shouldn't try to take on too much. Inthis light, restraint seems especially critical now, when the Iraq war hassiphoned off so much federal money. "It's like a forest fire running

throughscience and it burns a lot of trees down," says Dan Geschwind, a UCLAneurogeneticist. However, advocacy groups vow that the moment the billpasses, government funding for adult services will become their nextpriority. believes there is substantial congressional support forthis, 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, , 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, will ask, "Is it OK if I like Disney Princesseven though other kids my age don't like it?Keri Bowers of Thousand Oaks, Calif., says her son, Cross, 17, seemsperfectly normal at first. But sometimes he'll just blurt out what he'sthinking without any internal censorship. Passing a stranger on the street,he might say, "You're in a wheelchair!" "When you're socially odd, peopleare afraid," Bowers says. "They want to get away from you and cross to theother side of the street." Not surprisingly, had no friends at all inthe public school he attends until he began to meet other teens withautism‹young people his mother describes as equally "quirky."In one way, he's not quirky at all. "He's attracted to

girls," Bowers says,"but he's shy. He doesn't really know how to talk to them." A few monthsago, he asked out a girl from his school who does not have autism but whohad been friendly to him. Bowers had a psychologist friend shadow the couple at the movies. " 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 thegirl, surprised his mother with his sensitivity. "He said, 'Yes, butshe'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 strivefor perfection," says Chantal Sicile-Kira, whose son, , 17, cancommunicate 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, finds newenvironments difficult. "If he walks into a new store," his mother says,"and there's horrendous fluorescent lighting, within 10 minutes I'll lookdown and he's starting to wet himself." Despite such challenges, Sicile-Kiraplans to help 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 oftherapy, 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 noclose friends. Next year he'll turn 21 and will no longer be eligible forthe 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 hismother, 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 widelyavailable, families are left to cobble together a patchwork ofsolutions‹from informal day care to hourly caretakers to private residentialprograms. But these are stopgap

measures. Parents worry that they will runout of money to pay for these services‹and that they won't be around foreverto arrange them for their children.It's understandable that these parents would feel distraught. Many adultswith autism require so much special care that it's hard to imagine anyonebut a loving family member willing to provide it. "My wife and I areconcerned about what's going to happen to our son when we pass on," says Lee Jorwic, whose son , 17, is unable to speak even though he's been in therapy since childhood. At 6 feet 4 inches and 290 pounds, 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, got an eye infection. He couldn't sit still long enough for the doctor to perform an exam so he had to go underanesthesia twice "just so the guy could look in his eye," his father

says.Grossman says the Autism Society gets hundreds of calls every day fromfamilies like the Jorwics. "The most distressing, most disheartening, arefrom 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 forthe kid after they die."The natural successors to parents as caretakers would be siblings. Somefamilies feel that's too much of a burden; others say that's a natural partof life in a family with autism. When one sibling has autism, the needs ofso-called neurotypical children may seem to come second. Beth Eisman ofPotomac, Md., recently sent her oldest daughter, , 18, off tocollege. Her goal for her younger daughter, Dana, 16, is more basic:independence. Dana's tantrums limited the family's participation in's school activities. "The old days were pretty bad," Eisman says." often took the brunt of it."

Now that is gone, Dana feelsthe loss. Eisman says Dana often goes into her sister's room and says, "Iwant ."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 onewho talks to herself all the time and flaps her hands," says Roy Grinker, an anthropologist at Washington University and father ofIsabel, 15. "But if you ask these kids in 2006 about Isabel, they say she'sthe one who plays the cello and who's smart about animals." Inspired by hisdaughter, 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 wasconsidered rare and few physicians understood it or were able to help. Thedisorder was first identified by Leo Kanner of s Hopkins in 1943. Aboutthe same time a German scientist, Hans Asperger, described a less severeform of the condition. But with the ascendancy of psychoanalysis in thepostwar years, the predominant view was that autism was a psychologicaldisorder caused by a lack of love from "refrigerator mothers," a termintroduced by the controversial psychologist Bruno Bettelheim. In the 1970s, parents started 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 havebroadened the diagnosis to include a spectrum of disabilities. Now, they

arere-evaluting it even further, considering the idea that there may bemultiple "autisms." As knowledge about autism spread in the 1990s, families began to get moreaccurate diagnoses for children who might in the past have been labeledmentally retarded or emotionally disturbed, and the number of casesskyrocketed. Because of the Internet and extensive networking, parentsaround the country found allies and became powerful and articulateadvocates. Even longtime autism researchers say families have really led theway. "Beyond raising awareness," says Dr. Insel, director of theNational Institute of Mental Health, "families have become the real expertson this disorder. They have to figure out how to cope with a child whobecomes 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

roadahead is still unclear, they cherish small triumphs along the way. Grinkerhas a Ph.D. from Harvard and, in his community, many parents dream ofsending their children to the Ivy League. He and his wife, Joyce, apsychiatrist, know that Isabel will never join them. But raising Isabel hasits own rewards. Isabel's sister, Olivia, 13, is "like a third parent," saysGrinker. The family judges Isabel not by the standards of others but by howfar 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, thatis enough.With Springen and Carmichael. <http://www.msnbc.msn.com/id/15833367/site/newsweek/>Excerpt from sidebar on Treatments --Biomedical and dietary approaches: Medication is used to treat behavioralproblems like aggression, not the underlying condition. The type ofmedication will differ based on the behavior a doctor is attempting toaddress. Research has also found that gluten and casein are not properlyprocessed in the bodies of some children with autism; incomplete breakdown and excess absorption may disrupt brain functions. A gluten-free, casein-free diet is thought to address this problem. Some consider vitamins helpful. A common supplement used in autism is Vitamin B, which plays a role in creating enzymes needed by the brain. Essential fatty acids have also been shown to improve behavior._,_.___ .

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