social disease of blue state:
As Autistic Children Grow, So Does Social Gap
By JANE GROSS
ixth grade was a trying time for Karen Singer's autistic son, who spent recess wandering the periphery of the playground by himself and sometimes hid in the school bathroom when he needed a safe place to cry.
He knew he was doing something wrong as he reached the social crucible of middle school, but he did not know how to fix it. At home he begged his mother to explain: "Why am I like this? What's wrong with me?"
Intensive behavioral treatment, popularized over the last 10 years, prepared him academically and helped him get by in regular classes for years. But social skills are more elusive for autistic children, and the gap widens with each passing year.
Classmates who once tolerated his peculiarities now shunned him. Their interests had changed to hanging out and being cool, while he remained preoccupied with saltwater fish and Yu-Gi-Oh trading cards. During group projects the boy rigidly held his ground on small matters, like what color ink to use. When challenged, he blurted out, "You're stupid!" or other inappropriate retorts.
"It was shocking how it all of a sudden fell apart," said Ms. Singer, who asked that her son, now 13, not be identified by name or hometown and thus be further stigmatized. "He'd never say, 'I don't want to go to school.' He'd make it through the day, then come home and melt down."
Last fall the Singers moved their son to a private school for children with learning disabilities, persuading him that it was not a failure but rather an opportunity to feel less anxious. And he does.
The Singers' anguished choice is an unintended consequence of improved diagnosis and new behavioral therapy. A generation ago most autistic children would have been written off as hopeless. Now, as their numbers are increasing, many learn to speak and to tame their most difficult behavioral traits.
They are autism's success stories, moving from one-on-one instruction to typical public school settings. Last year 27 percent of this country's 141,022 autistic children were educated in public school classrooms with normal children, up from 11 percent of the 22,664 autistic children of a decade ago.
But these high-functioning children face a host of new problems as they approach adolescence, when social interactions become more complicated. Parents, educators, researchers and clinicians all say that the majority of such children become conspicuous in the third grade and are bullied or ostracized by the time they reach middle school.
Dr. Sandra L. Harris of Rutgers University, a pioneering educator and researcher in autism, said advances might have fed false hopes. "The intellectual skills of some of these children may lead people to expect more than is possible socially," Dr. Harris said. "They miss so much nuance that it can't be fixed in a 100-percent way. That was the hope. Now we know it's more elusive than that."
Christine Grogan, the director of a school for autistic children in Paramus, N.J., urges educators to be cautious about what they promise parents, adding, "There are many people in the field giving false hope" about whether remaining in the mainstream is realistic for more than a tiny number of children over the long haul.
Virtually nothing in the social arena comes naturally to autistic children. They must be taught how to have a conversation. To show empathy by asking questions. To resist arcane topics that do not interest others. Not to talk too loudly or to stand too close to the other person. To master the vocabularies of sports and flirting.
Even those with I.Q.'s above average struggle to read body language or to imagine what other people are thinking. If they learn a joke, they may tell it a dozen times. They are too literal-minded to understand white lies and too rule-bound to understand they should not tattle. They overreact to routine teasing and invite ridicule by carrying their books over their heads or accepting a dare to kiss a girl.
Faux pas that go unnoticed in the early grades later turn a child into a pariah. "Kids have very short memories when they're young," said Terese Dana, one of a growing number of behavioral therapists and psychologists who are making a career of teaching social skills. "They are much less forgiving as they get older."
Experts say it is possible to teach autistic children to be more interpersonally aware, just as it is possible to teach their peers to be more sensitive. All of Ms. Dana's clients, including Ms. Singer's son, have made significant improvements. But these children do best at an age when parents still organize their social lives and before having a one-on-one school aide becomes embarrassing.
Social skills training was critical for Jake Exkorn, 8. Right now Jake is indistinguishable from his peers in a small private school in Rockland County after six years of work with Ms. Dana. He has frequent play dates, no classroom aide and, according to his mother, Karen Siff Exkorn, no longer meets the diagnostic criteria for autism.
"Yes, we got him ready, like training an athlete for a marathon," Ms. Exkorn said. "But at the end of the day we probably just got lucky in the way Jake was wired."
Ms. Exkorn knows of other children who thrived at 8 and hit the wall at 11, so she remains vigilant. Ms. Dana visits Jake's classroom once a month to smooth a few rough edges, like his tendency to behave competitively in noncompetitive situations, for instance racing to get his coat and then announcing, "I'm first!"
"Terese has said that the stakes change every year, which scared me a little," Ms. Exkorn said. "But, I don't want to consume myself with worry about middle school now. So far, so good."
Jake is an exception. More typical is Kevin Lyons's 13-year-old son. When the telephone rings around 3:00 in Mr. Lyons's house in southern New Jersey, he can safely assume his son has unwittingly gotten into trouble. One recent day he yelled at a classmate on a school bus after the other boy taunted him. Mr. Lyons's son, unlike his frequent tormentor, did not know enough to retaliate when no adults were around.
"It's like he's got the words but not the music," Mr. Lyons said, reeling off a list of social situations that mystify his son, including inviting himself to parties where he is not welcome and crying in class when he misses one math problem. But Mr. Lyons, like many parents of autistic children, says that on balance his son has made more progress among typical children than he would have in a segregated setting.
Laura Sestito's 11-year-old son has withdrawn from the social fray in a Westchester public school. He dislikes sports, rejected a teacher's suggestion to play board games indoors during recess and has refused so many play dates that he is no longer invited. "His teacher reports he gets along with all his classmates but hasn't really connected with any of them," Ms. Sestito said.
Autism experts say that social skills training is the new frontier and that the burden has shifted from special schools and one-on-one settings to public schools because of the stunning increase in autistic children now able to attend.
Catherine Lord, a researcher at the University of Michigan and the primary author of a federal report on educational strategies for autistic children, said that many school districts are "still debating whether social development is even considered an educational objective," although social deficiencies are a hallmark of the disorder. Dr. Lord encourages parents to insist on having specific social skills spelled out in a child's individual education plan, mandated by federal law, and to call in a lawyer if necessary.
A few districts are using novel techniques, like the Montecito Union School, near the University of California, Santa Barbara, where graduate students from its Autism Research and Training Center help autistic children integrate at recess, an especially vulnerable time.
On a larger scale four districts in the New York region use a curriculum designed by Michelle Dunn, a pediatric neuropsychologist at Albert Einstein College of Medicine, which combines social skills groups for autistic children with schoolwide attention to the need for tolerance and trains school staff members to continue the curriculum on their own.
"We used to focus on one kid at a time," Dr. Dunn said. "But the problem is now too big for that."
Many educators who champion the behavioral techniques that made widespread mainstreaming possible are lowering their expectations. Bridget Taylor, a behavioral researcher who is the director of another school in Paramus, said she now tells parents of kindergartners ready for a regular classroom that "over time it's not necessarily a realistic placement."
Gary S. Mayerson, a New York lawyer who represents families seeking services for autistic children, says none of the options are ideal. Schools for learning disabilities rarely offer sufficient academic challenge. And private schools can choose which children to accept or to expel.
Ms. Singer knows well the agony of that choice. When her son's autism was diagnosed at age 2, he could not speak, make eye contact or sit in a chair. By kindergarten, thanks to a 40-hour-a-week home program with a behavioral therapist, he was in school with normal children, her heart's desire.
"In the beginning you have to reach for the moon," Ms. Singer said. "He would not be where he is today if we hadn't. But you also have to face reality. Do I wish he was a perfect child in a perfect school in a perfect world? Hey, who doesn't? I had to get over that in order to be fair to him." |
