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.
By Barbara Kantrowitz and Julie Scelfo
Newsweek
http://www.msnbc.msn.com/id/15792805/site/newsweek/
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
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 attracted 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 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 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."
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.
With Karen Springen
and Mary Carmichael
© 2006 Newsweek, Inc. | Subscribe
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