Monday, December 15, 2008

California teen with Asperger's starts support home for others with Asperger's

From the Merced Sun-Star in California:

Dave Marsh (pictured) told his mom last year that he'd like to start a support home for people who, like him, have Asperger's syndrome.

She figured her 17-year-old son meant when he grew up. Marsh quietly continued to research similar programs, sketch plans and brainstorm ideas to establish a nonprofit group. He wanted to do it now.

In the past year, Asperger's Supported Housing, or ASH, has gained momentum. Marsh registered the name, set up a checking account, raised enough money to apply for nonprofit status and found a vacant home that could be used for the program.

"Things just sort of happened and started falling into place," he said, standing in the room of the house that he hopes will be his office.

The house, in the Ragsdale neighborhood, is ready. He's just looking for those with the disorder who can afford $700 to $750 in rent, which includes utilities and food.

There was an initial group of adults interested in the home, but backed out when they learned how much it'd cost. He's now looking for community groups to help underwrite the cost.

Laurie Robinson, the home's owner, said she has held onto it because she has an 11-year-old son with Asperger's syndrome who will need a place to live when he's an adult.

Asperger's is a less-severe variation of autism, a brain development disorder that typically creates social interaction problems.

It's often misdiagnosed as obsessive-compulsive, Marsh's mother, Wendy, said.

Those with Asperger's function better, which puts them in a middle area where they don't need as much help, but still need guidance on basic living skills.

Marsh jokes that he has no problem cooking food. He just doesn't remember to eat.

Marsh is an 18-year-old with dirty blond hair that parts in the middle and glasses that rest near the tip of his nose. He fights stress by putting his head down and drawing, usually Japanese-style comic book figures.

His iPod Shuffle, loaded with Japanese music or classics, such as Frank Sinatra, stays clipped to his shirt. One headphone is pushed into his ear. Even if the music's not playing, the plastic blocks noise that can cause sensory overload.

He's fine with listening, but when he speaks, it's not like a mumbling teenager. Each word is enunciated clearly.

No one knows for sure what causes Asperger's, though it seems to be genetic. His father and one of his two sisters have it.

Like neurotypical people (a phrase used for someone without Asperger's), those with the disorder display personalities across the spectrum. The syndrome takes all sorts of different forms, though there are general symptoms, his mother explained.

A major one is that they take words at their face value, so slang often doesn't make sense. "What's up?" literally is heard as "What's above you?" Facial expressions and body language go by the wayside.

Social norms, such as regularly saying hello to a friend or "I love you" to a spouse, seem repetitive and unnecessary, she said.

His sister, Anne, who also has Asperger's, can't deal with a vacuum cleaner's noise. Dave loathes its vibration. Think nails on a chalkboard, she explains.

A 12-year-old Dave Marsh handed his mom a doctor's office booklet about social anxiety disorder. He thought he had it.

Years earlier, his older sister read a Reader's Digest article about autism and was convinced it described her.

Those incidents combined, along with a psychiatrist's advice, led Marsh to buying a book by Tony Attwood, who's authored several books about Asperger's.

Her husband, David, read it and said the stories reminded him of his childhood. Socially awkward, he developed a character to feel comfortable. Tests later revealed he has Asperger's. The diagnosis led the parents to realize that it was likely that both of their kids inherited the disorder.

Through a support group, they met Robinson, who offered up the house when she learned of his plan. She'll keep it open for about six months in case there's interest before renting it out.

"There really is not much of a social safety net in America," Robinson said. "We have to build our own."

Marsh imagines a trio of people living in the house. Volunteers will help teach them lessons about daily living while Marsh will oversee the home's operations.

Each person will take turns cooking dinner. They'll all share chores. Each person will live there for about a year so he or she can gain confidence in living alone.

Marsh opted not to live in it so there could be room for others. That way his net can catch and help one more person.