Local facilities, such as the Stanford Pervasive Development Disorders Clinic and its counterpart at UC San Francisco, are swamped. The Stanford clinic is able to perform only two or three diagnoses a week. It currently has a two- to six-month waiting list. For Rick Rollens, former secretary of the California Senate and cofounder of the MIND Institute, the notion that there is a frightening increase in autism worldwide is no longer in question. "Anyone who says this epidemic is due to better diagnostics," he says, "has his head in the sand."
Autism's insidious style of onset is particularly cruel to parents, because for the first two years of life, nothing seems to be wrong. Their child is engaged with the world, progressing normally, taking first steps into language. Then, suddenly, some unknown cascade of neurological events washes it all away. One father of an autistic child, Jonathan Shestack, describes what happened to his son, Dov, as "watching our sweet, beautiful boy disappear in front of our eyes." At two, Dov's first words - Mom, Dad, flower, park - abruptly retreated into silence. Over the next six months, Dov ceased to recognize his own name and the faces of his parents. It took Dov a year of intensive behavioral therapy to learn how to point. At age 9, after the most effective interventions available (such as the step-by-step behavioral training methods developed by Ivar Lovaas at UCLA), Dov can speak 20 words. Even children who make significant progress require levels of day-to-day attention from their families that can best be described as heroic. Marnin Kligfeld is the founder of a software mergers-and-acquisitions firm. His wife, Margo Estrin, a doctor of internal medicine, is the daughter of Gerald Estrin, who was a mentor to many of the original architects of the Internet (see "Meet the Bellbusters ," Wired 9.11, page 164). When their daughter, Leah, was 3, a pediatrician at Oakland Children's Hospital looked at her on the examining table and declared, "There is very little difference between your daughter and an animal. We have no idea what she will be able to do in the future." After eight years of interventions - behavioral training, occupational therapy, speech therapy - Leah is a happy, upbeat 11-year-old who downloads her favorite songs by the hundreds. And she is still deeply autistic. Leah's first visit to the dentist required weeks of preparation, because autistic people are made deeply anxious by any change in routine. "We took pictures of the dentist's office and the staff, and drove Leah past the office several times," Kligfeld recalls. "Our dentist scheduled us for the end of the day, when there were no other patients, and set goals with us. The goal of the first session was to have Leah sit in the chair. The second session was so Leah could rehearse the steps involved in treatment without actually doing them. The dentist gave all of his equipment special names for her. Throughout this process, we used a large mirror so Leah could see exactly what was being done, to ensure that there were no surprises." Daily ordeals like this, common in the autistic community, underline the folly of the hypothesis that prevailed among psychologists 20 years ago, who were convinced that autism was caused by a lack of parental affection. The influential psychiatrist Bruno Bettelheim aggressively promoted a theory that has come to be known as the "refrigerator mother" hypothesis. He declared in his best-selling book, The Empty Fortress, "The precipitating factor in infantile autism is the parent's wish that his child should not exist. ... To this the child responds with massive withdrawal." He prescribed "parentectomy" - removal of the child from the parents - and years of family therapy.
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