Autism program backers on alert

CHAPEL HILL -- The day Mary Lou Warren met Eric Schopler was so momentous that 42 years later she can tell you that he wore a plaid shirt, corduroy pants and a corduroy jacket and had mud on his shoes.

He evaluated her son, George, who at age 6 was still in diapers and couldn't talk, and said, "I can help you."

Six months later, George was speaking.

"We all felt like we had struck gold," Mary Lou Warren said recently, referring to the 20 families considered to be the founding parents of TEACCH, the autism program that Schopler founded.

"My life was bedlam," she said. "I had gone through six years of hell and felt hopeless. And all of a sudden I found this wonderful thing that turned my life around. This was a miracle."

That was in 1968, and Warren has been a loyal TEACCH foot soldier ever since. But now she and other parents are raising questions about how the UNC School of Medicine is handling the program Schopler built into an internationally recognized autism treatment and support program.

TEACCH stands for Treatment and Education of Autistic and related Communication-Handicapped Children. In the 1960s, many schools and doctors didn't know what to do with autistic children paralyzed by their inability to communicate. Schopler taught parents to help their children improve those skills. He was very successful.

TEACCH operated largely on its own for four decades. But prompted by budget cuts and calls for efficiency, medical school officials two years ago merged it with three other developmental disabilities programs. TEACCH parents bristled at the change as questions rose about who was in charge. Now leaders have moved the program again.

As school officials figure out what to do with it, parents like Warren fear any change at all.

"There are a lot of people out there dealing in autism, but they don't all follow the TEACCH philosophy," said Warren, who lives in Durham. "As long as I live and breathe, I want to know what they're doing with this."

Officials say they are committed to TEACCH's core values and that any changes will be administrative. "We're trying to be more efficient and cost-effective," said TEACCH interim director Margaret Dardess.

Dardess was put in charge of TEACCH after Gary Mesibov, 64, who succeeded Schopler, resigned recently after 31 years with the program. Attempts to contact Mesibov were unsuccessful. Schopler's genius was in helping parents help their children. Through flash cards, memory games, regimented testing and other exercises, parents brought life and happiness to their children. It was a long, frustrating, rewarding slog.

Today, George Warren is living in a group home in Durham. He works at a vocational rehabilitation program, speaks a little and understands a lot.

His mother believes in the fundamental TEACCH methods. That's why she helped form a local chapter of the Autism Society of America and joined other parents in lobbying the legislature - successfully - for state funding for TEACCH. The original appropriation was $550,000 in 1971; its budget this year is $6.1 million .

Medical school officials and an advisory group will spend the year determining the program's future.

Jamezetta Bedford is one adviser. The Bedfords moved to Chapel Hill from Baltimore in 1992 seeking help for their autistic daughter Shannon, then 5. Her role on the advisory group is to make sure the program's values are fully appreciated, she said.

Much of parents' unease is because of budgets cuts that led to the elimination of seven TEACCH administrative positions, she said.

"The worry was: If they're laying off seven, what are they doing?" Bedford said. "Are they phasing it out? Will it be just research and no clinical services?"

But Stuart Bondurant, a former dean of the UNC medical school, thinks the university believes in TEACCH, even if it may change the way it operates.

"People are afraid there will be a compromise in the care," said Bondurant, who, at the university's request, recently analyzed the program's leadership structure. "In my view, that's not so at all. If anything, it can be strengthened."

By Eric Ferreri, (919) 932-2008, The News & Observer