Lessons on living with autism

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Lessons on living with autism

By Joanna Weiss, Globe Columnist | September 12, 2010

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, 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@....