Best buddies
For two young men with autism, friendship is the key to an independent lifestyle.

by Kathleen Kearns

The events Alex Gilpin and Scott Lambeth planned for a recent Tuesday were like many people’s weekday activities: household chores, exercise, lunch, work and an evening social engagement.

But Gilpin and Lambeth’s schedules are kept more carefully than most. Each has a loose-leaf binder spelling out the routines of the day. Gilpin’s notebook lists brief directives (“Start morning routine”) while Lambeth has more explicit instructions (“Get up and put on watch, make bed, use toilet . . .”).

The two young men consult their binders frequently and check off each task as they accomplish it. Such exacting time management helps Gilpin and Lambeth, who both have autism, to live on their own as roommates sharing a townhouse near University Mall.

Lambeth, 27, is dark-haired, outgoing and athletic-looking. It’s no surprise to learn he won multiple medals in the 1991 International Special Olympics. When a visitor arrived at their home last week, he was first to the door and quick to introduce himself.

Gilpin is 24, with softer features and reddish hair. An avid pianist with an encyclopedic knowledge of rock and roll, he is more reserved than his roommate. But when Lambeth starts talking about sports — Lambeth likes to talk about sports — Gilpin chimes right in: “I hope those Tar Heels will win. Go Tar Heels!”

According to Gilpin’s mother, Starla Clement, the two men have a level of independence highly unusual for people with autism.

Rooted in a brain disorder, autism interferes with the ability to understand sensory information and relate to other people. About 10,000 residents of North Carolina have autism or a related disorder, lifelong conditions that are four times more common in males than females. Like Gilpin and Lambeth, some achieve a high level of functioning through painstaking effort to master normal speech patterns and conventional ways of connecting with people.

Clement said that autism typically causes deficits in language, organizational skills and judgment. For instance, she said, both Gilpin and Lambeth have trouble judging when they can safely cross the street or how full the dishwasher should be before they run it.

“They don’t generalize information,” she said. “Everything is rule-based. They need to have 5,000 rules.” A steady schedule is key.

With rules and schedule in place, they buy their own groceries, microwave their own meals, do their own banking, and travel by bus to their jobs, the swimming pool, and social events. When they first moved into an apartment together almost four years ago, they existed in what Gilpin’s father, Wayne Gilpin, called parallel universes — separate lives in the same house. Now they function as a team.

“They can speak for the other one and know what the other one needs,” said Cristina Phillips, regional services manager at the Autism Society of North Carolina. Hired privately by Gilpin and Lambeth’s families to help with social planning, Phillips has seen the pair learn to provide support for each other.

“They might say ‘It’s time to get out of the pool and go on to the next thing,’” she said. “They’ve grown to trust each other. They give each other space when needed and appreciate each other’s differences and similarities.”

Lambeth, who describes himself as a diehard Carolina fan, has convinced Gilpin to go along with him to home games, although Gilpin’s interest in sports is limited. Megan Clode, another member of the team that supports the young men’s independence, said Gilpin knew he needed to have something to talk with Lambeth about, and sports was it.

Clode, who like Phillips is a private employee, visits about five hours a week and is the chief developer of the rules and daily schedules that keep Lambeth and Gilpin on track. Asked to put a title on the role she plays in their lives, she laughingly came up with “Goddess of Time Management.” She also helps them work out typical roommate issues such as what to do when one plays music more loudly than the other would like.

The men take cues from each other, Clode said. “They’ll say, for instance, ‘When he is ready to go swimming, I know I’m ready to go swimming, too.’”

Lambeth has some difficulty with his hands, so Gilpin helps him tie his shoes and change batteries. He also helps his friend stay on schedule, gives him advice about what to wear, and checks behind him to make sure everything is done correctly.

Starla Clement and Lambeth’s parents, Betty and Rick Lambeth, sat in on their sons’ conversation with the visitor. Betty Lambeth said her son tends to plan the social schedule. “He helps Alex in the social realm. Alex used to be more quiet. Now he has come out more.”

“Alex is really funny,” said Scott Lambeth. “He tells all these jokes that really crack me up.” As an example, Lambeth told about the time he was saying goodbye to his mother on the phone. “I said, ‘I’ll call you tonight.’”

He started laughing too hard to finish, and Gilpin continued the story. “I said, ‘Don’t call her tonight. Call her Mom.’”

Lambeth said, “That was really funny.”

The two men met through a social group organized by Division TEACCH at UNC’s school of medicine. TEACCH stands for Treatment and Education of Autistic and related Communication handicapped CHildren, though the statewide program also serves adults.

Asked what TEACCH does, both men were stumped for a moment. With his mother’s prompting, Lambeth replied, “They coordinate services,” and Gilpin added, “For people who have autism. Is that right, Mom?”

“They helped me get my job,” Lambeth said.

“They helped me get my job, too,” said Gilpin.

And Lambeth added, “They helped us move in together.”

Kathy Hearsey at TEACCH introduced the two families and suggested the young men might live together, Rick Lambeth said. Gilpin was already living semi-independently in a basement apartment at his mother’s house, and Clement thought he needed a roommate.

Betty Lambeth had grave doubts about her son’s readiness. “I was sure he couldn’t do it,” she said, “but Scott was bound and determined.”

Clement showed them the apartment, and Scott Lambeth said to his mother, “I want you to let me move in with Alex.”

“I told Scott and TEACCH that if he could get a job, he could move in,” Betty Lambeth said.

Job coaches with TEACCH helped both Gilpin and Lambeth find work, and for the first year the men lived together, TEACCH counselors helped with scheduling and shopping. The parents began keeping an eye out for a home more convenient to friends, services, entertainment, and the bus line. They bought a townhouse for them in October 2000.

For nearly four years now, Lambeth has worked half time at the UNC mailroom, sorting mail into bins. “It’s totally the perfect job for me. I’m a whiz at it. Every one of the box numbers, I’ve got them all memorized.”

Gilpin added, “Though he does get stuck on these numbers: 1, 4, and 9.”

Betty Lambeth explained that seeing those numbers in digital form literally paralyzes him so he can’t leave the room. Consequently, there are no digital clocks in the house, and the illuminated numbers on the VCR and microwave are covered with slips of paper.

The problem clearly doesn’t trouble Lambeth at work. “He’s real good with numbers,” his supervisor Archie Lassiter said. “Unless he’s sick or something, he’s here. He loves his job. Everybody loves him. He’s like one of the mail family here. Whatever we do, he does.”

Gilpin has a paying job for about seven hours a week at Balloons and Tunes. He also holds volunteer positions with the public library and Volunteer Orange, and he is currently looking for additional paid work.

Pat Garavaglia, co-owner with Sharon Collins of Balloons and Tunes, said Gilpin helps them by putting order forms in date order, filing, taking out the recycling and trash, and squeezing air out of Mylar balloons.

“He has a very strong work ethic,” Garavaglia said. “Sometimes I’ll ask him if he wants to take a break and have a candy bar, and he’ll say, ‘I don’t think that’s the best idea right now, Pat. I am working.’ He’s absolutely even tempered and easy to get along with, always willing to do anything you ask him to do.”

Lambeth and Gilpin’s living arrangement works because a constellation of factors are in place. Both men function at a high level of competence. They have the financial, emotional, and practical support of their families, and those families have actively encouraged them to become independent. TEACCH provides job coaches, and Clode and Phillips provide specific kinds of support.

The two families have become remarkably close, and their friendship also helps make the arrangement work.

“I would trust Starla to do exactly what she does for Alex for Scott,” Betsy Lambeth said. “And I think she feels exactly the same way.”

Then too, there’s the crucial role of simple objects like cell phones and microwaves.

“If there weren’t microwaves, I don’t think they could do this,” said Starla Clement. “Cooking requires judgment. It’s complicated knowing when something has boiled too long, or how to keep from burning themselves.”

Because Gilpin and Lambeth rely so heavily on public transit, said Megan Clode, they couldn’t sustain their present quality of life if they were in a place like Mebane or Hillsborough.

“We take the bus to our jobs,” said Gilpin.

Lambeth said, “I have a really nice bus driver in the afternoon — Joyce (Wilson). I have trouble crossing the street and she knows it. She gets off and helps me. I didn’t ask her to do it. She just does.”

The bus also facilitates their active social schedule of meals out, ball games, movies, and other activities. Their social life has blossomed since they’ve lived in the townhouse, said Betty Lambeth. “Scott called once and said he hadn’t eaten at home in 11 nights,” she said.

“The best thing he has ever done is get away from me, and that’s the truth,” she said. “I didn’t think he could live that independently.”

Clement calls the living arrangement a godsend. Though Lambeth and Gilpin will always need some assistance, she said, their success living independently has lessened their parents’ concern about what will happen when the parents die.

Megan Clode said it is unusual for two people with autism to get along well enough to live together.

“They’ve worked very hard to be where they are, and their parents have too,” she said. “Every day is still quite a challenge. It can be a lot of work for a person with autism to live in this world. It’s almost like living in a foreign country and not knowing the language. But they’re very motivated to be successful — and that’s unusual. That’s a big part of why it’s working out for them. They have the cognitive ability to understand what they’ve achieved, and they like it a whole lot better than where they were a couple years ago.”

Though Lambeth and Gilpin regret they can’t have a pet where they live, they like just about everything else about their living situation. Neither wants to move back with their families.

“I wanted to live in my own place, but I couldn’t do it without Alex,” said Lambeth. “I’m a big people person — I don’t like to be alone at all.”

Chapel Hill News, 8/31/2003