Culture

Autism: Fact and Fiction

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 contained live viruses. Not long after, a debate over the effects of thimerosal, a mercury-based preservative used in other vaccines, began to build.  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.

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