As Autistic Children Grow, So Does Social Gap

Sixth 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."

Richard Perry/The New York Times
Jake Exkorn, 8, who had early social skills training, has frequent play dates. He recently horsed around with Sergei Bluman and Will Youmans.

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So a decade ago there were 22000 autistic children, and now 6 times more, 140000. The population has not grown sixfold over the decade, and diagnostics 10 years ago was not SO bad as to miss 80% of them. So, unless it is an epidemics, why such growth in their numbers?

The two kids I know who are Autistic never even got close to 1st grade, let alone 6th grade on their own (unless thier parents, grandparents, school, etc. were ALL completely clueless) to even ask the question "Why am I like this. What's wrong with me?". If you get "that far" without Autism being discovered as a factor, then it isn't a factor. To even be able to ask that question indicates that its something else, not Autism.

My Mom was pregnant and at the same time had German measles in 69... and although the odds were she would have a handicapped baby being devout Catholics abortion was not an option. She is a saint

Johnny was born autistic and deaf.
We had 5 kids in a small house.
No regrets.... at this time Johnny is a little blessing.

If you think you have problems think of little guys like him and count your blessings.

It's not an epidemic. Diagnostic skills are much improved today. My second cousin is Autistic. Unfortunately, his mother is of the opinion that at the age of 17 he will improve by the miracles of prayer, rather than occupational therapy and medication.

Surviving middle school is hard for many children but when you are autistic it can be a nightmare. The hormones kick in and scramble the progress you have made with the child. They didn't have a clue on how to behave in elementary school and even less as to how to handle their sexuality. The suicide rate is fairly high for high functioning autistic children as they grow into their teens. They are the perpetual outcast. All a parent can do is love them like a rock and keep trying to help them grow into a adult. A autistic child can be like a battle that never ends, you just never give up, do whatever it takes, and never surrender.

If you get "that far" without Autism being discovered as a factor, then it isn't a factor. To even be able to ask that question indicates that its something else, not Autism.

Autism is a spectrum, and children can be autistic at different points along that spectrum, so it is not always easy to diagnose.

I entered autism, annual prevalence. This was one of the abstracts listed. Click "Related Articles". The epidemiology of autistic spectrum disorders: is the prevalence rising?

"The evidence suggests that the majority, if not all, of the reported rise in incidence and prevalence is due to changes in diagnostic criteria and increasing awareness and recognition of autistic spectrum disorders."

My son has been working in group homes with Autistic middle school boys....He's recently got a promotion, but hates to leave....Several are really making progress. There just are not enough people trained to help all in need.

She's not related to my sister-in-law is she? Their boy is 16, was in a legit therapy program for maybe a year when he was 3 or so. None since - "home schooled." He still wears a diaper and head phones to block out all sound so that he's manageable. She never took him to speech therapy (but they took the government money provided by SSDI). Now they're seeing a chiropractor-type weekly who claims to be able to help. My husband was just back visiting the whole family - said in 3 years nothing has changed that he can tell. The parents claim he's making improvements. If there are any they aren't particularly functional ones.

this is so my 26 yro dtr.....as the years have gone by, instead of feeling more comfortable in her own skin, she grows more and more withdrawn....

my objective view of her is that she carries so much tension and worry on her face...

the little things that most people just don't worry about, she worries....

she has never had a friend, wouldn't know how to make one, or to keep one...

she goes to the mall and one particular young woman salesperson was meerly polite and kind to my dtr, and my dtr took it to mean that she wanted to be some long lost friend....but the salesperson was only doing her job....

I can say for a fact that even thought these people are socially withdrawn, they do long for friendship.....its just out of reach for them with their differant social outlook and behaviors...

its very sad......

Autism is a spectrum, and children can be autistic at different points along that spectrum, so it is not always easy to diagnose.

In my experience (admittedly limited) a 6th grader asking his parents why he was the way he was after successuflly making it to that level academically is not indicative of Autism. Granted, I'm a Banker, not a Doctor, but the Autistic kids I know would not have made it (actually didn't make it) past preschool before being diagnosed. I know were're talking about public schools here, but even for them preschool and 6th grade are worlds apart.

He isn't that bad, but he has grow tall and heavier than his mother. (Her husband left her some years ago.) He knows he can whip up on mom. He has already broken her arm once when he threw her across the room.

I've been telling her for years to put him in home-care or he is going to kill her. She is holding out for a cure from Jesus.

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