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Chapel Haven program helping those with Asperger's Syndrome For Young Adults with Aspergersby Sandi Kahn Shelton, The New Haven Register
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Ariana Habib, 18, had a wonderful thing happen to her the other day. She joined a conversation about movies with several young women in her college art class. She even suggested a movie they might enjoy, and they asked her questions about it and said it sounded interesting.
Later, she figured out the bus schedule and made her way home.
You're probably thinking this is the stuff of routine human interactions, replicated thousands of times each day and yet, for Habib, who has Asperger's Syndrome, this simple conversation, and this ride on the bus, represent nothing short of a breakthrough and are cause for great, if quiet, celebration.
People with Asperger's Syndrome have normal to above-normal intelligence, yet their brains are wired in such a way that they have difficulties in "reading" human social signals like facial expressions and dealing with the back-and-forth of ordinary conversations.
Sometimes thought of as a possible form of high-functioning autism (without the mental retardation aspect), Asperger's Syndrome wasn't diagnosed as a separate disorder until 1994.
Those with Asperger's have a variety of problems, say experts. They are often thought of as geeks or "little professors" because they become fixated on certain subjects and collect information almost obsessively. People with Asperger's might be able to recite the entire Amtrak train schedule or, as in one documented case, the birthdates of every member of Congress.
They tend to be very literal in their speech, says Betsey Parlato, president of Chapel Haven. "If you say it's raining cats and dogs, they look around for the animals."
Even though they're smart, they often can't hold jobs because they can't get through the typical small talk in an employment interview. Friendships and intimate relationships often elude them, and even renting an apartment can be a daunting task.
And they are not happy. In fact, often they experience depression and anxiety, and they are all too aware of their lack of social success.
"They want very much to be social," says Michael Storz, executive vice president of Chapel Haven, a nonprofit organization that offers residential support to adults with cognitive challenges. "They want to have friends, but they don't know how. They are often victimized and bullied because they're outcasts."
Jeremy Winkler, 20, grew up in upstate New York and describes himself as a nerd who cared only about computers and video games. He had a tough time getting along with other kids and ended up getting a GED instead of graduating from high school with his class.
"I am of fairly small stature," he says, "and it was difficult for me to communicate with normal people. There are people in cliques who delight in tormenting the smaller, nerdier people. And if someone wasn't interested in computer or video games, I wasn't interested in being with them."
Now there's hope.
In July, Chapel Haven officially opened its pioneer Asperger's Syndrome Adult Transition Program, a residential and educational program that helps adults with Asperger's Syndrome create an independent life for themselves. Storz, who is now the director, helped write the curriculum the first ever which focuses on social and communication skills, self-determination, independent living skills and career preparation.
Eight young adults six men and two women enrolled, including Habib and Winkler. Last summer, they moved into four apartments in a building Chapel Haven acquired for this program, and for the last four months, they've been learning and practicing such ordinary skills as cooking, cleaning, budgeting, going to movies, eating out in restaurants, shopping in malls, taking college classes, finding public transportation, banking and, something that can be very difficult for loners: coping with a roommate.
Working closely with the Yale Child Study Center, the Asperger's transition program is carefully documenting how this curriculum works in the hopes that it can be a basis for such support programs all across the country.
The clients in the program have one-on-one coaching, work with language and speech pathologists, do plenty of role-playing and watch themselves on videotape. From now until the end of the program in two years, they'll continue to work on learning how to read the meaning of facial expressions, the subtle nuances of conversation and how to navigate "the hidden rules we all know about social interaction that they don't pick up on," says Karin Byrer, a certified therapeutic recreation specialist and a supervisor in the program.
"They'll learn how to change the subject in a conversation, and what are appropriate things to say in small talk, what the etiquette is in public restrooms, and how to understand slang and idioms."
And best of all, perhaps, after they make the transition to independent living, the participants will still receive support from the program for the rest of their lives as long as they settle in Greater New Haven.
The first four months of the program have brought about noticeable and in some cases, astounding changes in the participants, says Parlato. They are all working on different sets of goals, but all of them have made progress using the curriculum.
The price tag for such intensive work is about $80,000, which is all-inclusive. Some participants are receiving support from their school systems to help with the cost.
Habib's mother, Layne Habib, of Shokan, N.Y., says the program has made her daughter much more self-reflective and mature. "I can't believe the difference in her in such a short time," she says. "She recently came to New York to be on a panel of teens talking about Asperger's, and she answered questions very appropriately, and talked eloquently about what worked for her. She spoke about people respecting her here. I saw so much more self-awareness in her."
Winkler, who's been enrolled in residential programs before, says he is finding Chapel Haven very interesting in how it helps residents achieve goals.
His goals, he says, "are to become more socially adept, and to perform well academically." Then he hesitates a moment, thinking. "And someday I'd like to get a master's degree in autism. I think this is a revolutionary program."
by Sandi Kahn Shelton ©New Haven Register 2006
sandishelton@comcast.netFor information about the Tucson program, call 1-877-8CH-WEST; or for the New Haven programs, 203-397-1714, ext.113, or jlefkowitz@chapelhaven.org. Learn more about Chapel Haven at our website