Autism Conference in Kansas City, Mo.

Contact: Roger Martin, Research and Public Service, 864-7239, [email protected], or
Dann Hayes, University Relations, (785) 864-8855 or [email protected].

KU COUPLE TO SPEAK AT AUTISM CONFERENCE

LAWRENCE -- Jay Turnbull has autism and mental retardaJay and those involved with him.

In 1987, that was the story of JayÃŒs 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 witsÌ end.

They tried a new approach.

Now, 12 years later, the Turnbulls will be presenting JayÃŒs 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 sonÃŒs 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 ÏThinking in Pictures.Ó

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 childÃŒs 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 JayÃŒs life changed since the stormy days of 1987?

ÏHe is fully included in the Lawrence community,Ó Turnbull said, Ïand 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.Ó

ÏHis 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, Îless disabled.Ì Without this strategy, he would be Îmore disabledÌ because we would have been using old ways of dealing with him, and those would not have resulted in progress.Ó

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

-- Community support. ÏJay changes his way of doing things,Ó Turnbull said, Ïand so do the people around him. ItÌs hard, hard work for everyone -- a marathon, not a sprint. But the payoff is enormousÓ; -- Frequent meetings. At these, Jay and those in his community -- including two housemates who donÌt have disabilities -- work to understand JayÌs 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 isnÌt a standard part of the positive behavior approach, the Turnbulls have carefully explored medications that diminish JayÌs problem behaviors.

Turnbull said, ÏIn our presentation we will emphasize that the combination of changing the bt in dealing with children with behavior proglems. The findings will be presented at an autism c environment as a whole and using the right drugs is a daunting task. You have to calibrate all these elements so each is part of a consistent and supportive system.Ó

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

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