June 30, 1999

KU COUPLE TO SPEAK AT AUTISM CONFERENCE

In 1987, that was the story of Jay's life.

Rud and Ann Turnbull, unable to devise strategies to support the kind of life they wanted for Jay despite having six university degrees related to children with disabilities, were at their wits' end.

They tried a new approach.

Now, 12 years later, the Turnbulls will be presenting Jay's story, and the nuts and bolts of that approach, called Positive Behavioral Support, at a conference on autism in Kansas City, Mo.

The approach was recognized in 1997 by the U.S. Congress as state-of-the-art in terms of dealing with children with behavior problems, said Wayne Sailor, director of the University Affiliated Program at the University of Kansas.

The autism conference will run from July 6 to 10 at the Kansas City Marriott Downtown, 200 W. 12th St. in Kansas City, Mo.

The Turnbulls, co-directors of the Beach Center on Families and Disability at KU, will present their work on how they diminished their son's problem behaviors from 3:30 to 5 p.m. Wednesday, July 7, in the Imperial Ballroom of the hotel. Theirs is the keynote address that day.

Another featured presenter at the conference is Temple Grandin. An assistant professor of animal science at Colorado State University in Fort Collins, Grandin, who has autism herself, has written several books about the condition, including "Thinking in Pictures."

Grandin, who has appeared on many television shows, was the subject a few years ago of a long feature story in The New Yorker.

She will be the keynoter on Saturday, July 10. Her talk will run from 10:30 a.m. to noon in the Imperial Ballroom of the Marriott.

In 1997, Congress reauthorized the federal special education law, Turnbull said.

At that time, he said, Congress included language mandating families and school officials to consider using the positive behavioral support approach in two circumstances: first, when a child's behavior impeded his or her learning or the learning of others; and, second, when a child had been disciplined for a violation of school codes.

Much of the research and development behind this approach occurred at the universities of Kansas, Oregon and South Florida, Sailor said. He and Doug Guess, KU professor of special education, have worked on it with the Turnbulls.

How has Jay's life changed since the stormy days of 1987?

"He is fully included in the Lawrence community," Turnbull said, "and that is rare for someone with so many disabilities. For the past 10 years, he has worked part time at KU and has an active recreational and social life."

"His language is far more complex today, and his ability to understand other people has improved. He is socially much more mature. He is, if you want to put it this way, 'less disabled.' Without this strategy, he would be 'more disabled' because we would have been using old ways of dealing with him, and those would not have resulted in progress."

There are several keys to the positive behavioral approach, Turnbull said:

• Community support. "Jay changes his way of doing things," Turnbull said, "and so do the people around him. It's hard, hard work for everyone -- a marathon, not a sprint. But the payoff is enormous";
• Frequent meetings. At these, Jay and those in his community -- including two housemates who don't have disabilities -- work to understand Jay's behavior. They focus on supporting positive behaviors so that in time these crowd out the negative ones;
• Environmental changes. In the case of a school-age child, school officials and teachers, for example, would be drawn into a discussion of elements in the school environment that might be causing problems;
• Medication. Though this isn't a standard part of the positive behavior approach, the Turnbulls have carefully explored medications that diminish Jay's problem behaviors.

The work with Jay "is not a controlled experiment," Turnbull said. But because there is an inner circle of interested people, including two psychologists, a psychiatrist and some of Jay's KU co-workers, there is "a high degree of safety and accountability."