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COPYRIGHT 2003 All rights reserved. Reproduced by permission of The Condé Nast Publications Inc.
Regina Wagner began to realize that there was something wrong with her son Daniel when he was eight months old. He wasn't sitting or crawling, as her first child, Katie, had done at that age. Over the next year, Regina had more reasons for concern. Daniel didn't make eye contact with her or with her husband, Dan, and he didn't say Mama or Dada. Daniel's pediatrician attempted to reassure the Wagners. "Boys do things later than girls," he said. At eighteen months, Daniel said a couple of words, but he soon stopped. He did not respond to his name. He didn't like to be touched or held. He flapped his hands and feet. At the Sugar Plum Daycare Center, in Bethesda, Maryland, which he and Katie attended five days a week, Katie played joyfully with other children. Daniel remained in his own world and often bit other toddlers who came near him.
In October of 1997, three months before Daniel's second birthday, the Wagners took him to be evaluated at Georgetown University Medical Center's Child Development Center. During the evaluation, Daniel wandered around the testing room, pushing away test materials he was offered. He banged and threw blocks, instead of stacking them. Given a toy car to play with (pushing a toy car over a flat surface is considered an eight-month-level skill), he turned it upside down and spun its wheels. The testing revealed that Daniel's cognitive and behavioral difficulties were "consistent with a diagnosis of Autistic Disorder."
Parents of autistic children rarely forget the details of the day they are first given the child's diagnosis. Dan Wagner remembers asking one of the psychologists, "Are you telling me that Daniel won't be a quarterback at Harvard?" He also remembers her reply: "Well, actually, he may not graduate from high school."
Dan Wagner grew up in Montgomery County, Maryland. His father, a graduate of Harvard, was an electrical engineer; his mother was a teacher. (Both are retired.) "I'm the black sheep in my family," Dan says. "My older brother and sister are college graduates, but I dropped out of the University of Maryland to become a policeman in D.C." He married young, and has a son and daughter by his first wife. (Both children graduated from college; the son is a financial planner, the daughter a film director.) Dan, a tall, lean man of fifty-six with a full head of gray hair, is a homicide detective sergeant. He supervises a group of younger detectives, and his work hours are demanding and always changing.
Regina, a pleasant-looking woman of thirty-eight with brown hair and brown eyes, was raised on Manhattan's Upper West Side. While attending law school at Catholic University, in Washington, she worked as a part-time law clerk at the United States Attorney's office, and met Dan when they worked together on a case. "I never liked dating men my age," she says. After Regina and Dan were married, she took a job as an assistant state's attorney for Montgomery County, where they settled.
The Wagners' third child, Grace, was born a few weeks before Daniel's evaluation at Georgetown; she was a much easier baby than Katie (who had been clingy) and Daniel (whom Regina described as "a lump" during his first few months). Grace looked directly at her parents and smiled. She crawled early and walked early. At twelve months, however, she still wasn't speaking. Three months later, she, too, was given a diagnosis of autism.
Diagnosis --
In 1943, Leo Kanner, a psychiatrist at Johns Hopkins University, wrote a paper in which he vividly described eleven children with severe social, communication, and behavioral problems, including extreme aloofness and indifference to other people. He applied the term "early infantile autism" to these children. The medical profession was slow to embrace Kanner's term. As late as 1968, the scientific literature was still using the label "childhood schizophrenia."
Kanner originally believed that bad parenting played a role in the origin of autism. He later changed his mind, but other physicians subscribed to the bad-mother theory long after Kanner discarded it. When autism was diagnosed in Daniel Wagner, Regina was devastated by the implication, which still lingered in the psychiatric literature, that she was somehow to blame for his condition.
The person who was best known for putting the onus on "refrigerator mothers" was Bruno Bettelheim, the director of the Sonia Shankman Orthogenic School at the University of Chicago from 1944 to 1973. After his death, by suicide, in 1990, some of his former patients, now adults, asserted that they had been physically abused by Bettelheim while in his care.
In 1956, a psychologist in San Diego named Bernard Rimland and his wife, Gloria, had their first child. The Rimland baby screamed and resisted being held in the nursery of Mercy Hospital from the day he was born, and kept screaming and resisting throughout his infancy. The prevailing psychogenic theory of autism made no sense to Rimland: he and his wife hadn't had a chance to do any parenting. In 1964, Rimland published a book called "Infantile Autism," in which he concluded that autism was not caused by bad parenting but was an organic disorder with a strong genetic component. The book played a significant role in changing the world's perception of autism. Today, autism is accepted as being a complex developmental disorder of the brain that interferes with the brain's normal development.
Autism is considered a "spectrum" disorder. Among the disorders on the spectrum are classic autism, the diagnosis that both Daniel and Grace Wagner received, in which children suffer from a triad of symptoms (impaired social interaction, a delay in or a total lack of spoken language, and difficulty with motor skills); Pervasive Developmental Disorder--Not Otherwise Specified (P.D.D.-N.O.S., also known as atypical autism), in which a child has some but not all of the deficits associated with autism; and Asperger's syndrome, which is characterized by average or better-than-average language skills but impaired social skills. Autism is four times more common in boys than in girls; Asperger's is ten times more common in boys.
Because of the medical community's long-standing fixation on bad parenting, biomedical research was neglected for decades. Only a few researchers were seriously focussing on autism in 1994, when the National Alliance for Autism Research was established and became the first non-governmental organization committed to biomedical research on the disorder. Last week, federal officials convened a national conference in Washington to unveil an ambitious ten-year plan to address the problem. Among its many goals, the program will provide funding to help identify the disorder's genetic and environmental causes, provide better services for children suffering from it, and train therapists to better help them.
Recent studies suggest that autism spectrum disorders occur in an estimated one in every two hundred and fifty children. Ten years ago, the number was thought to be one in twenty-five hundred. Theories attempting to explain the increase range from citing improved diagnostic tools and public awareness--children once considered "eccentric" might now be labelled autistic--to blaming environmental factors. Much attention has been focussed on the possible role of childhood vaccines as a precipitating factor; a recent Danish study found no evidence for that theory.
Autism is believed to involve between ten and fifteen genes. There is currently no in-utero test for autism, as there is for Down syndrome. There is no simple dietary intervention for autism. Every few years, new miracle treatments for autism have been touted--and subsequently discredited. Some parents are proponents of "floortime" (getting down on the floor and playing with the child, letting the child take the lead in playing) and others of having the child swim with dolphins, but no studies on the efficacy of such treatments have been published. So far, only one study has provided any real hope for parents.
In the late nineteen-seventies, a Norwegian-born psychologist named O. Ivar Lovaas began a study at U.C.L.A. on sixty autistic children. Children in the study's experimental group received forty hours a week of an intensive, highly structured form of behavior modification called Applied Behavioral Analysis. The therapy was administered by student therapists trained at U.C.L.A. The parents were also trained in therapy, so that supplementary treatment could continue for most of the children's waking hours. Children in two control groups received only ten hours of therapy a week, with no supplemental parent training.
The study was published in 1987. The children in the three groups were compared at the ages of six and seven. Nine of the nineteen children (or forty-seven per cent) in the experimental group completed normal first-grade classes and were promoted to the second grade. In contrast, only one of the forty-one children (or two per cent) in the two control groups was placed in a normal first grade and promoted to a normal second grade.
The theory behind Applied Behavioral Analysis rests on the assumption that autistic children have inefficient neurocircuits--specifically, connections that are not as efficient as those found in normal children. In normal children, a connection may go from A to B, but in the autistic brain the connection may go from A to C to D to E before finally reaching B. Inefficient connections result in more "noise," which is believed to hinder social and cognitive development. Lovaas's therapy takes advantage of the brain's ability to adapt and be retrained. When people learn a particular skill, such as throwing a baseball, they are reinforcing neurocircuits that are specific to that skill. When autistic children are taught a specific behavior through constant repetition, the therapy is training the neurocircuits to respond in a certain way and...
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