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Joanna Weiss

Lessons on living with autism

By Joanna Weiss
Globe Columnist / September 12, 2010

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LEE

LIKE MOST college students, the kids at the College Internship Program have spent the last few weeks gearing up for classes, meeting roommates, readying for life away from home. But on this tiny campus in the Berkshires, they’ve been getting extra help.

For instance, they take courses in “executive functioning’’ — not business techniques, but the cognitive work of decision-making and self-control. In their classroom, posters offer tips for talking to acquaintances. “Smile and say ‘hello’ to initiate a dialogue. Ask them how they are to build rapport.’’

For people with high-functioning autism and Asperger’s disorder, this is hardly intuitive stuff. And if the number of autism diagnoses has risen dramatically, so too will the number of teenagers who reach this tentative place: ready to leave the cocoon, but not quite ready for the world.

The question of how to help them isn’t flashy, controversial, or celebrity-studded. That may be why far more attention goes to the torrid debate over autism’s causes, the hunt for ways that the disorder can be “cured.’’

The staff at the College Internship Program chafes at the notion that autism is something to cure or defeat. A diagnosis is a piece of your identity, says the program’s founder, Michael McManmon. His philosophy centers on self-knowledge. “If you understand who you are and what makes you tick,’’ he said recently, “then you can alter it and you can fit into the world.’’

For McManmon, self-knowledge came years after he founded the program. It was his staff that pointed out that he probably had Asperger’s, which explained his vast energy, his entrepreneurial skills, his trouble managing personal relationships. It also explained his interest in 1984 — when kids with social disabilities were getting deinstitutionalized — in finding ways to ease their transition to independent life.

Since then, McManmon’s program has expanded dramatically. It now serves young adults with autism, ADHD, and learning disabilities, and has five campuses across the country. At the original campus in Lee, about 40 students live in group apartments downtown, aided by a 24-hour residential staff. Many take classes at Berkshire Community College and have internships at local businesses. They also get lessons in nutrition and hygiene, help with grocery shopping and cooking, twice-weekly sessions with advisers who help them organize and plan.

They come with a range of issues and needs. Some have trouble with basic social skills, and might get intense coaching on holding conversations or making eye contact. Others have trouble managing time. Recent graduate Liz Gray, a 24-year-old with Asperger’s, told me she’s easily distracted: “God help me if I’m working on a task and there’s something shiny or sparkly in the room.’’ Before she came to Lee, she had dropped out of a mainstream college, burned by one disastrous semester. Now, she’s living on her own in Pittsfield, feeling strong.

Young adults often find their way here after experiencing failure, according to Jeff Wheeler, the program’s academic coordinator. “You see somebody come in who has such great potential, and has never really been able to find their legs under them,’’ he said. “They typically have this ‘lazy and dumb’ label.’’

His task, he says, is to convince them that they have the power to meet their goals, to seek their dream careers. That sometimes means making mistakes and learning how to fix them: last year, one student skipped so many papers in a college course that he had to write four in a single day. But it sometimes means success, by anyone’s standards. One student recently sold his photographs at a solo exhibit at the Lee public library.

The stories are encouraging, but for many families, they’re also out of reach. The program’s large staff of teachers, tutors, and advisers comes at a price: The most intense set of services can cost more than $70,000 a year, though prices typically drop as students progress.

The program has a small foundation to finance scholarships. A handful of students get help through state programs or local school systems. But many high school graduates who could use a school like this are on their own — invisible, despite all the attention over autism’s rise. And searching, as usual, for ways to navigate an unforgiving world.

Joanna Weiss can be reached at weiss@globe.com.

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