The Kids Who Beat Autism

http://www.nytimes.com/2014/08/03/magazine/the-kids-who-beat-autism.html?partner=MYWAY&ei=5065&_r=0


By RUTH PADAWERJULY 31, 2014

At first, everything about L.'s baby boy seemed normal. He met every developmental milestone and delighted in every discovery. But at around 12 months, B. seemed to regress, and by age 2, he had fully retreated into his own world. He no longer made eye contact, no longer seemed to hear, no longer seemed to understand the random words he sometimes spoke.

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When I met with them in February, they told me about all the treatments they had tried in the 1990s: sensory integration, megadose vitamins, therapeutic horseback riding, a vile-tasting powder from a psychologist who claimed that supplements treated autism. None of it helped either boy.

Together the women considered applied behavior analysis, or A.B.A. — a therapy, much debated at the time, that broke down every quotidian action into tiny, learnable steps, acquired through memorization and endless repetition; they rejected it, afraid it would turn their sons into robots. But just before B. turned 3, L. and her husband read a new book by a mother claiming that she used A.B.A. on her two children and that they “recovered” from autism. The day after L. finished it, she tried the exercises in the book’s appendix: Give an instruction, prompt the child to follow it, reward him when he does. “Clap your hands,” she’d say to B. and then take his hands in hers and clap them. Then she would tickle him or give him an M&M and cheer, “Good boy!” Though she barely knew what she was doing, she said, “he still made amazing progress compared with anything he’d gotten before.”

Impressed with B.'s improvement, both families hired A.B.A. specialists from the University of California, Los Angeles (where A.B.A. was developed), for three days of training. The cost was enormous, between $10,000 and $15,000, covering not only the specialists’ fees but also their airfare and hotel stays.

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After that, B.'s language blossomed quickly. By the time he finished kindergarten, he was chatty and amiable, though he remained socially awkward, hyperactive and unyieldingly obsessed with the animal kingdom

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Whether because of the coupons or maturation or something else, B.'s monologues stopped by second grade. Around the same time, his fixations eased. B.'s doctor concluded that the last vestiges of his autism were gone; he no longer met the criteria, even in its mildest form.

L. was ecstatic, but she was also plagued by guilt. Though Jackie’s son received the same treatments as B., he had made no such progress. Matthew still could not talk. He remained uninterested in other children and most toys. And despite efforts to teach him, Matthew’s communication remained extremely limited: When he squealed loudly, he was happy. When he threw up — which for a year he did daily — his parents concluded that he was distressed, after a doctor assured them that there wasn’t anything physically wrong with him.

“Jackie did everything for him,” L. told me, her voice filled with angst. “Everything. She tried just as hard as I did. She hired the same people, did the same work. . . . " Her voice trailed off. She was sure that the behavioral therapy had allowed her to reclaim her son, but she could not understand why it had not done the same for Matthew.

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In the last 18 months, however, two research groups have released rigorous, systematic studies, providing the best evidence yet that in fact a small but reliable subset of children really do overcome autism.

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“Those of us who work closely with children with autism,” says Geraldine Dawson, a psychologist and researcher at Duke University’s department of psychiatry and the Institute for Brain Sciences, “have known clinically that there is this subgroup of kids who start out having autism and then, through the course of development, fully lose those symptoms — and yet people always questioned it. This work, in a very careful and systematic way, shows these kids exist.” She told me that she and many of her colleagues estimated that 10 percent or more of their autistic patients no longer had symptoms.

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Scientists suspect that what is called autism may actually be an array of distinct conditions that have different genetic and environmental etiologies but happen to produce similar symptoms. If true, it could help explain why some children progress so much while others don’t.

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There do, however, seem to be some clues, like the role of I.Q.: The children in Lord’s study who had a nonverbal I.Q. of less than 70 at age 2 all remained autistic. But among those with a nonverbal I.Q. of at least 70, one-quarter eventually became nonautistic, even though their symptoms at diagnosis were as severe as those of children with a comparable I.Q. who remained autistic (Fein’s study, by design, included only people with at least an average I.Q.) Other research has shown that autistic children with better motor skills, better receptive language skills and more willingness to imitate others also tend to progress more swiftly, even if they don’t stop being autistic. So do children who make striking improvements early on, especially in the first year of treatment — perhaps a sign that something about their brains or their kind of autism enables them to learn more readily. Researchers also say that parental involvement — acting as a child’s advocate, pushing for services, working with the child at home — seems to correlate with more improvements in symptoms. Financial resources, no doubt, help too.

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“I see a lot of parents of 2-year-olds,” Catherine Lord says, “who have heard stories about kids growing out of autism, and they tell us, ‘I want my kid to be one of those kids.’ ” She reminds them that only a minority of children lose their symptoms, and she counsels parents to focus instead on helping their child reach his or her potential, whatever it is, instead of feeling that nothing short of recovery is acceptable. “When you get too focused on ‘getting to perfect,’ you can really hurt your child. A typical kid fights back against that kind of pressure, but a kid with autism might not. It’s fine to hope — it’s good to hope — but don’t concentrate so much on that hope that you don’t see the child in front of you.”

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