Teens and Young Adults Have Become the New Face of Autism Raising New

Questions About the Future of Care and Treatment

Congressman Who Blocked Combating Autism Act Now Moving to Pass
Compromise Version Of Bill; Parent Says Act 'Is Probably the Single
Most Important Thing

That Could Happen Besides the Cure'

NEW YORK, Nov. 19 /PRNewswire/ -- 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. 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. Danny seems
not to notice any of this. "Mom," he says 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." In Newsweek's November 27 cover
story (on newsstands Monday, November 20), "Growing Up With Autism,"
Senior Editor Barbara Kantrowitz and Assistant Editor Julie Scelfo
look at how thousands of families like the Boronats are coping as
their autistic children reach adolescence and young adulthood -- and
how the goals of the autism activist movement are evolving as the
disorder continues to challenge science.

(Photo: http://www.newscom.com/cgi-bin/prnh/20061119/NYSU004 )

Over the past twenty years, the dedicated parents of children with
autism have lobbied passionately to get better education for their
kids and more money for research into autism. The culmination of much
of this parental activism is the Combating Autism Act, which 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. Now that the Democrats have won the House, Barton will lose
his chairmanship in January -- and Newsweek has learned that he is
moving to pass a compromise version of the bill before then. If
passed, the House bill will fund a new push for early diagnosis, which
is critical to starting therapy as soon as possible. It will also
earmark money for research into an array of issues, including the
question of whether environmental factors play a role in causing
autism. 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. Altogether,
says Alison Singer, the mother of a daughter with autism and an
executive at the advocacy group Autism Speaks, the legislation "is
probably the single most important thing that could happen besides the
cure."

A win in Washington may lift their spirits, but it won't really change
much for the Boronats and others like them, report Kantrowitz and
Scelfo. Most government-sponsored educational and therapeutic services
stop at the age of 21. "Once they lose the education entitlement and
become adults, it's like they fall off the face of the earth," says
Lee Grossman, president and CEO of the Autism Society of America, a
major national-advocacy group. And 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.

Many families are sustained knowing that, by raising awareness of
autism, they have already given their children the great 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."

But despite the many advances, parents of autistic children still fear
for the future, Kantrowitz and Scelfo report. Once unable to utter a
sentence, Danny now reads at a second-grade level, competes in Special
Olympics and willingly takes on household chores like loading the
dishwasher. But he also can spend hours playing with water. 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. And 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.

(Read entire cover package at www.Newsweek.com.)

What Happens When They Grow Up:

http://www.msnbc.msn.com/id/15792805/site/newsweek/

A Terrible Mystery: http://www.msnbc.msn.com/id/15792806/site/newsweek/

The Editor's Desk: http://www.msnbc.msn.com/id/15792804/site/newsweek/
SOURCE Newsweek