A Disorder That's Defining an Era
Margaret MacNeil has to be one of the few mothers in the history of parenthood who was happy her baby had colic. Cormac screamed that unmistakable colic scream for his first three months. But as awful as it was, MacNeil took comfort in her firstborn's daily crying jags. It meant just one thing to her: He didn't have autism, at least not at 3 months. So far, so good.
MacNeil knows that babies with autism can be unusually easy infants, docile and rarely fussy. The 42-year-old Princeton, NJ, mom knows many other things about autism, as well, because her family has a history of the disorder, which covers a spectrum of neurodevelopmental problems characterized by repetitive, often obsessive behaviors and impairments in verbal and social skills. Her nephew, who's now a teenager, is autistic. One of her cousins has a similar set of symptoms, and looking back, the family sees now that an uncle who died young was likely autistic as well. "That's three males in my mother's family," MacNeil says, anxiety etched in her voice. "That feels like a lot to me."
The fear of autism may weigh more heavily on MacNeil than on most parents -- research shows that autism runs in families -- but she's not alone in her worry, not by a long shot.
The Centers for Disease Control and Prevention (CDC) estimates that 1 in 88 children in America have autism. This number is more than studies counted during the late 1980s and early '90s, although the figures, like so much of the public discourse on autism, are tinged with controversy. At its most severe, autism can render kids nonverbal, emotionally unreachable, and sometimes self-abusive. On the other end of the spectrum are people with Asperger's syndrome -- unusually intelligent and quick learners who nevertheless have trouble with social interactions and reading others' emotions.
Since the 1940s, when Leo Kanner, M.D., working at what is now called Johns Hopkins Children's Center in Baltimore first used the phrase "early infantile autism," a diagnosis of autism has been a bombshell for devastated parents who struggled, often in isolation, to get care and treatment for their children. Now, as the numbers climb for this confounding disorder, which typically manifests itself before the tender age of 3, autism's effects are rippling out into the neighborhood, the classroom, the doctor's office, and even the U.S. Congress, as the nation begins to grapple with the challenge before it. "The 'terrible twos' have been replaced by something that really is terrible," says Arthur Caplan, Ph.D., chair of the department of medical ethics at the University of Pennsylvania School of Medicine in Philadelphia. "Autism is leaving parents nervous in ways we haven't seen since the polio epidemic."
A Disorder That's Defining an Era
Autism isn't contagious, and parents' concerns in no way approach the very public hysteria of the polio years. Yet as polio did in the first half of the 20th century, before its cause and cure were discovered, autism today strikes infants and young children seemingly without reason or medical explanation. That random vulnerability can make parents feel hopeless, Dr. Caplan says: "Autism is increasing, and we don't know why."
And just as polio was as much a part of growing up in the 1950s as Hula-Hoops and drive-in movies, autism is becoming inextricably woven into the lives of young children and their families in this first decade of the new century. Statistically and anecdotally, parents today are more likely than at any time in history to know, or have, a child with autism. Christina Adams, author of A Real Boy: A True Story of Autism, Early Intervention and Recovery, knows 14 children in her Southern California neighborhood with the disorder. Peter Bell, CEO of the national research and advocacy group Cure Autism Now and father of a 12-year-old boy with autism, notes, "It's very rare that you meet someone who doesn't know a family that's affected. I meet strangers on planes who say they have a nephew, or a friend, or a work colleague with a child who is autistic."
The disorder is more out in the open in part because it's been pushed there by parents and autism advocates who insist that others acknowledge the overwhelming realities these families face. At the same time, it's arising as a broader cultural force. Open the sports page or flip on the television to see football star Doug Flutie talking about his autistic son, Doug Jr., and the charitable foundation set up in his name. Browse the local bookstores to find not one but two award-winning recent bestsellers with autistic characters, Mark Haddon's The Curious Incident of the Dog in the Night-Time and Gennifer Choldenko's Al Capone Does My Shirts. Witness the standing-room-only crowd that attends the announcement in Manhattan of a new private school, the Rebecca School, for children with autism and other neurodevelopmental disorders. Breeze by the newsstand to see autism featured on the covers of Newsweek and Rolling Stone.
This summer the new book Evidence of Harm by journalist David Kirby, a Rolling Stone article by Robert F. Kennedy Jr. titled "Deadly Immunity," and some well-publicized Congressional drumbeating by Florida Republican Dave Weldon, M.D., brought the disorder even further into the limelight by reopening the contentious debate over whether thimerosal, a mercury-based preservative used in some vaccines in the United States until 2003 (and still present in some pediatric flu shots), might cause autism. Some parents, who say their babies and toddlers went from normally developing to unreachably withdrawn within days or even hours of receiving a vaccine, have long said yes. But multiple epidemiologic studies have failed to support a connection. As boldfaced names in high places took the thimerosal theory mainstream, parents who'd dismissed the connection as anecdotal happenstance started to have misgivings. In response, three important public health agencies -- the CDC, the Food and Drug Administration (FDA), and the National Institute of Child Health and Human Development -- held a joint news conference in late July to reaffirm that childhood vaccines save lives and that no link to autism in children has ever been proven.