Saturday, February 26, 2005

Autism and mainstreaming: beyond the 3rd grade

The New York Times > Health > As Autistic Children Grow, So Does Social Gap

I've been thinking about this article throughout the day. Here's the article, I've comments below. Emphases mine. The author is writing about kids with generally above average IQ and very low "EQ" (social skills). All have been diagnosed as having autism, presumably Aspergers in some cases.
... 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...

...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...

...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.

I don't have the time to put my comments into a coherent paragraph, but here are some thoughts:
  1. When I read the description of these kid's school life it's hard not to think of Larry Summers, President of Harvard. Or the kids I knew at Caltech. Or a heck of a lot of electrical engineers. Of course those comments don't remind me of my childhood, heaven forefend.

  2. Despite what I just wrote in #1, although nerdliness has a certain facile resemblance to autism, that doesn't mean they share the same pathophysiology. A person who's never had an interest in piano may play just as poorly as someone who's quite unable to learn. The difference is the first person may learn to play, even if they don't enjoy the process.

  3. There do exist communities that will support persons with high IQs and very low EQs (emotional intelligence quotient); but you usually have to be over 18 to join up and capacity is limited. At the other extreme LD schools may not be able to handle the academic range of many of these kids; even worse, LD schools are often under heavy political assault with perpetual underfunding and high rates of teacher burnout.

  4. It's hard to know what the best political solution is, but my hunch is that it's around redoing what an LD school is about and building a stronger political support structure for the abused LD world. Perhaps there's a way to harness the energy of the autism community; many of the parents of children with high IQ autism may be somewhat nerdly* but they are not themselves autistic; they function well enough to have both power and money. There might be a way to leverage those talents to refactor LD schools to serve a broader community.

  5. Adult life with high functioning autism may be far more agreeable than high school life. Even for people who don't have autism or Asperger's, high school can be pretty difficult -- adult life has more niches and opportunities than adolescence provides. So the challenge for parents (like we need more challenges) is to somehow get the kids through high school in one piece. I think this is much harder in the US than elsewhere, I think Americans have produced a uniquely intense and socially demanding high shool environment.
*In our household "nerdly" is an attribute, not a defect.

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