Autism is everywhere — once again. Here’s looking at what separates fact from fear as the courts and Hollywood wade inYou 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. HBO will air “Autism: The Musical”, a documentary about five children with autism who perform in their own show. 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 UN 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. 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 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? 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. Today, Charlie is doing much better, even learning to surf, but he is still “profoundly different” from other children, says Chew. 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. -CLAUDIA KALB—with Karen Springen (Newsweek)
