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“Epidemic” is a word that’s haunted all of us more than once in our lives, whether it brings to mind AIDS, cancer, polio, measles, smallpox or influenza. Now, it seems we’re faced with a global epidemic more dramatic than any of those, one that—according to the Centers for Disease Control in Atlanta, Ga.—currently affects the lives of one in 150 American children (in Britain, it’s one in 98). Stack that up against polio, which afflicted one in 3,000 at its peak, or AIDS, which impacts one in 18,000. One fundamental difference is that, in this epidemic, nobody’s dying. At least, not physically.
Autism. It seems like it’s in the news every day and yet it continues to be greeted in some quarters with astounding ignorance and insensitivity. Think of radio personality Michael Savage, who ranted just this past July, “I’ll tell you what autism is. In 99 percent of the cases, it’s a brat who hasn’t been told to cut the act out.” Or the pediatrician who tells the frightened parents of a toddler that the odd social behaviors they’re observing seem significant only because they themselves have “first-child syndrome.” Or the neighbor who tells a devastated mom that her children can no longer play with the child who was just diagnosed with the condition because it “might be contagious.”
Meanwhile, those on the front lines—parents, doctors, researchers, service providers, teachers, legislators, people with autism themselves—are battling over almost everything. What causes it? What treatments are most effective? Which should be covered by HMOs? Can it be cured? How can we help families who have a child with autism? How do we educate the public? Is “epidemic” really the right word for the number of cases we’re seeing? No wonder the autism “ribbon”—the ubiquitous symbol for causes of all kinds—is a multicolored jigsaw puzzle.
There’s a war on, and we’re moving ahead, but we’ve got a long way to go. Let’s meet some of the soldiers in the autism army.
Autism has been part of medical lore and scientific discourse since the 18th century, but we still don’t know precisely what triggers it. Researchers and clinicians are pretty much agreed on what it looks like, however. Ami Klin, director of the autism program at the Yale University Child Study Center in New Haven—a leader in autism research, diagnosis and clinical services since the 1950s—sets the basic parameters. “In discussing autism, I like to cite Dr. Seuss, who talks about ‘Thing One’ and ‘Thing Two,’” he says. “The ‘Thing One’ about autism is it’s first and foremost a social disability. The ‘Thing Two’ is that it is a neurodevelopmental disorder, which means it’s an early-onset condition. The preponderance of evidence these days is that whatever causes autism is in effect before the child is born, but the symptoms may not be visible till a child is 12 or 18 months.”
The symptoms that define the social-disability aspect are threefold. The first is problems in communication: The child’s ability to speak may be delayed or not develop at all, “but it’s primarily their ability to use language to communicate how they feel and what they want, to establish sympathy or empathy, that’s missing,” says Klin. (Sensory issues—lack of eye contact and “stiffening” upon being touched—are part of this.) These children also often struggle with what he calls an impoverished imagination; they have difficulty “playing pretend.” Issue No. 3 is rigidity, “being unable to deal with change, indulging in the same behaviors over and over again.” Such behaviors may range from seemingly purposeless actions like hand flapping to compulsive rituals and even self-injury. Sadly, in 60 percent of cases autism is combined with some level of mental retardation.
While they all share these commonalities, the reality, as Klin puts it, is that there is “not one autism but many autisms,” as laid out in the American Psychiatric Association’s revised diagnostic bible the DSM-IV (published in 1994). In addition to the “classic” syndrome Klin describes, four additional pervasive developmental disorders (PDDs) are now included on the “autism spectrum,” including Rett syndrome, which is seen almost exclusively in girls (male fetuses with the disorder rarely survive) and childhood disintegrative disorder, characterized by the late onset (even as late as age 5 or 6) of symptoms including a dramatic regression in already established language and social skills. Asberger’s syndrome is marked by profound social disability, but speech development is not delayed, and the individual’s cognitive capabilities may reach genius range. Finally, PDD-NOS (not otherwise specified) is something of a catchall for children with symptoms of autism who usually seem neurotypically “normal”—for lack of any better word—until certain social circumstances cause the limits of their skills to be revealed. “Thirty years ago, these individuals would not have been diagnosed with autism,” says Klin.