Mysteries and Complications
Autism is everywhere--once again. Separating fact from fear as the
courts and Hollywood wade in.

Claudia Kalb
NEWSWEEK
Updated: 11:53 AM ET Mar 15, 2008
You wonder what he thinks. The little boy who flaps his arms and bangs
his head. Who bristles at the touch of wool and covers his ears when
balloons go "pop!" The boy who doesn't respond to his name and will
never say "I love you." What does he think of the world outside? The
busy world of childhood vaccines, celebrity fund-raising and genetic
research. The cauldron of medicine, media, politics and the law. What
does he think of autism?

For that matter, what are we to think? Passions about autism are
running higher than ever, and for good reason. Autism spectrum
disorders affect one in 150 kids from all walks of life, according to
the Centers for Disease Control and Prevention, a tenfold jump in just
the past decade. As the numbers grow, public awareness increases and
the fervor surrounding each new development intensifies.

Earlier this month, after the federal government said vaccines
aggravated an underlying disorder that led to autism-like symptoms in
9-year-old Hannah Poling, the longstanding controversy over the role
of childhood vaccines flared anew on network newscasts, the Internet
and talk radio. The culture of autism is hitting prime time, too. Next
week HBO will air "Autism: The Musical," a documentary about five
children with autism who perform in their own show. A week later,
Sundance Channel will broadcast "Autism Every Day," a film laying out
the challenges faced by families. April 2 marks the first World Autism
Awareness Day, a global effort voted into existence by the U.N.
General Assembly. Less than two weeks after that, Jon Stewart will
host an autism fund-raiser at New York's Beacon Theater, to be aired
live on Comedy Central. Among the glittery lineup: Tina Fey, Stephen
Colbert and Conan O'Brien.

Despite its high profile, however, autism is one of the most
complicated neurological disorders known. Some of the people on "the
spectrum" attend college; others never speak an intelligible word. Its
complexity, in fact, is what has fueled the ongoing vaccine debate and
caused divisions within the "autism community." Unlike most conditions
that attract popular and celebrity support--breast cancer, AIDS--autism
is almost a complete mystery, with no known cause. The vacuum created
by this lack of knowledge has been filled with the theories, worries
and frustrations of desperate parents. It's hard not to want
something, or somebody, to blame. But now, as the spotlight glares
again, it's time to separate fact from fear, to strive for perspective
and clarity over emotion, to define the true scope of the disorder.

For decades, researchers have been trying to pinpoint a cause for
autism. In the 1950s, clinicians blamed "refrigerator mothers" and
their cold, uncaring parenting. More recently, the furor has swirled
largely around childhood vaccines. In 1998, a controversial British
study, later retracted by most of its authors, suggested a possible
link between autism and the MMR vaccine, which then contained
thimerosal, a mercury-based preservative. Starting in 2001, thimerosal
was removed from almost every childhood inoculation (some flu shots
still contain it), and the weight of scientific evidence has found no
connection between autism and the preservative. Today, scientists
believe that genes (the disorder runs in families) and environmental
factors, which could be anything from pesticides to antibodies in a
mother's womb, both play a role. But some parents continue to believe
their children were injured by modern medicine. Sen. John McCain lent
his voice to their cause recently when he said "there's strong
evidence" that autism is connected to "a preservative in vaccines."
That, and this month's ruling in the Poling case--which was one of
thousands yet to be decided by a federal "vaccine court"--have given
new fodder to the debate. In a CNN "quick vote" conducted after the
news broke, 58 percent of respondents said they believe there's a
connection between childhood vaccines and autism.

But the court case wasn't that simple. It turned out that Hannah had a
rare mitochondrial disorder. Rather than support the thimerosal
hypothesis, the decision endorses a whole other field of research into
the causes of autism. It's possible, scientists say, that a challenge
to the immune system--be it an infection, a vaccine or some other
trigger--could stress already fragile cells and exacerbate the problem.
Scientists want to know how many children with autism have
mitochondrial disorders. And would it be possible to identify those
who might be vulnerable to vaccines? "This case is a call to action to
continue to understand this very complex disorder," says Geraldine
Dawson of the advocacy group Autism Speaks.

To appreciate the complexity of the condition, all you have to do is
look at the extraordinary range of people who fall under the umbrella
diagnosis of autism spectrum disorders. At one end are kids like
Charlie Fisher. At 10, he's unable to read and can speak only short
sentences. For two years, he head-banged several times a day, says his
mother, Kristina Chew, who writes a blog called autismvox.com. Chew
believes that vaccines had nothing to do with her son's condition and
she worries that all the vaccine attention detracts from the more-
urgent needs of people with autism, who require intensive behavioral
interventions and social services--the kind of help her son has
received. Today, Charlie is doing much better, even learning to surf,
but he is still "profoundly different" from other children, says Chew.
"There are some things that maybe he can change and other things I
hope people can come to accept."

On the other end: Ari Ne'eman, president of the Autistic Self-Advocacy
Net work and a 20-year-old university student. Ne'eman was diagnosed
at 12 with Asperger's syndrome, a high-functioning subgroup of the
spectrum. Exceedingly articulate, Ne'eman says he has never struggled
with speech, but he has always had difficulty understanding nonverbal
forms of communication, like sarcasm. He also flaps his hands
occasionally and he can't stand the feel of certain fabrics,
especially velvet.

With the vast range in abilities comes a striking diversity in
thinking, too. Over the years, the autism community has divided into
camps, often with conflicting ideas about how to view and treat the
disorder. Elizabeth Horn, president of the Autism Recovery Consortium,
believes vaccines may play a role. Kids "slip away after getting these
shots," she says. Horn, whose daughter, Sophia, has autism, believes
children on the spectrum are sick, but can recover with help. Sophia,
12, is on a special diet, avoiding artificial colors and chemicals,
and she takes supplements like magnesium and vitamin D. Ne'eman, on
the other hand, believes in neurodiversity, the idea that differences
in human behavior should be celebrated, not fixed. People with autism
should be called "autistic people," he says, not "people with autism,"
the language favored by mainstream advocacy groups. "Our feeling is
that the autism spectrum is an intrinsic part of our personality that
cannot be separated," says Ne'eman. And he worries about research that
might one day locate genes and other markers that could help doctors
test for autism. Researchers say such knowledge would allow them to
intervene early, during a critical window of development in the first
year of life. Ne'eman's fear? That autism will become like Down
syndrome--essentially selected out of the population.

It's a provocative idea. But the ultimate goal of the researchers, and
the many families who support their work, is to solve the mystery of
autism. Clarity is what we need, and science is the way we'll get
there.

URL: http://www.newsweek.com/id/123474