February 22, 2005

SIUC's Center for Autism Spectrum Disorders Center offers help, hope for children and families

by Pete Rosenbery


Caption follows story

CARBONDALE, Ill. -- When Niki Clendenin heard her 4 1/2-year-old son Andy repeat the word "Mommy" just a few weeks ago, the Marion woman could barely contain herself.

"I was ecstatic because you long to hear that," she said.

Andy, who has autism, stopped talking when he was about 15 months old, Clendenin explained during one of his therapy sessions at Southern Illinois University Carbondale's Center for Autism Spectrum Disorders.

"I have seen a tremendous change in just the four short months he has been here for group therapy," she said. "There is a big difference; a big change."

Autism is a developmental disorder that delays or impairs a child's language and social behaviors and interaction relative to the child's age. It appears within the first three years of a child's life. The disorder affects children differently; some are more mildly impaired than others.

The Autism Society of America estimates that as many as 1.5 million Americans have a form of autism.

Anthony J. Cuvo, director of SIUC's center, and a professor in Behavior Analysis and Therapy, and Rebecca J. Trammel, a clinical director in the center and instructor in the Communication Disorder and Sciences program, started the program in 2000. The services are free thanks to a grant from the Illinois Department of Human Services.

The center offers diagnostic, intervention and consultation services for children with autism spectrum disorders and their families, and a training ground for graduate students. It is one of the service programs within the Rehabilitation Institute and is part of the College of Education and Human Services.

For Clendenin, small steps are adding up to significant progress for her son. Until he began participating in the therapy sessions, Andy didn't know the meaning of the word "stop." Before, Andy ran when his parents chased after him, believing it was a game. Now he walks alongside them and is following other simple commands. Andy also is holding hands and playing ball and hide-and-seek with his older brother – things he had not done before.

"He's not talking to him yet, but I know in any time it is going to come out because he is making progress in so many other areas that the words are not far behind. It's just wonderful," she said.

Claudia Vanwey of West Frankfort said her 3-year-old son, Hunter, has come a long way since beginning in the program a year ago. His language and cognitive skills are improving, and he is beginning to interact with other children.

Both mothers said their families, already closely knit, are much stronger from these experiences.

"It has taught me that I am a lot stronger person than I thought I was," Vanway said. "I have a lot more flexibility than I thought I did. You learn to manage your time. A lot of the things you thought were important aren't as important as you thought."

SIUC's center is one of three pilot sites in The Autism Project, and each pilot site works with a community partner. Project participants are developing model programs for diagnosing, treating and educating children with autism spectrum disorders, or ASD. This is the final year of the three-year grant, and Cuvo hopes funding is renewed.

SIUC's community partner is the Family Counseling Center in Vienna. The center is implementing model treatment programs promoting social interaction for children younger than school age, and also programs for children who attend school.

One goal, Cuvo said, is for the models to be developed at each of the pilot sites and expanded to satellite centers in other areas of the state.

The other two pilot sites for the Autism Project are at the University of Chicago and the SIU School of Medicine in Springfield. The medical school's community partner is the Hope School.

Along with working with children in individual and group therapy settings, the center provides a variety of training workshops and consultation services for families, service providers and professionals who work with the children.

The center has provided services to about 100 families since 2000, including autism assessment and referrals, school consultations and individual and group therapy. The center began with a collaboration of three graduate students and three children, and continues to grow. The center performs the University's mission of teaching, research and service, Cuvo said.

More than 90 graduate students in the Behavior Analysis and Therapy and Communication Disorders and Sciences programs have been involved, and put in about 200 cumulative semesters of study.

Parents watch their children's sessions with the graduate students on a video monitor in a nearby room, and Trammel and Cuvo explain not only what is happening, but also how they can do things at home based on what they see on the screen.

The program's objective is to get children "as fully included into society as possible," and some school-aged children are fully included in regular classrooms, Cuvo said.

"But we want these children to be fully included in other aspects of society with their families as the other children in the family are," he said. "We want the children to be able to go with their parents to the stores and go to the movies and go to restaurants and the ballgame, whatever it might be."

Because the center sees the children for a maximum of nine hours a week, parental involvement is key.

"They need to carry over what we are doing so that they can work with their children at home," Cuvo said. "We, in a sense, are the laboratory to figure out how to work with the children but the parents need to extend that to the home."

Aside from the center, there are limited alternative treatment options in the region, Cuvo said. For children up to three years old there are early intervention services with individual therapists who go to a child's home once a week. When a child reaches three years old, they are eligible for early childhood classrooms and special education services.

"There isn't any of the kind of intensive behavioral and communication programming that we have," he said.

"What we have to offer is this combination of the University's expertise in behavior analysis and speech therapy and the systematic approach to instruction that we provide that is not available anyplace else," he said.

Leading in research, scholarly and creative activity is among the goals of Southern at 150: Building Excellence Through Commitment, the blueprint for the development of the University by the time it celebrates its 150th anniversary in 2019.

For information about the program, contact the Center for Autism Spectrum Disorders at 618/536-2122. More information is also available online at http://www.siu.edu/~rehabbat/Autism/.

Caption - Breakthrough work – Kelli J. Tande, a graduate student in the Behavior Analysis and Therapy Program at Southern Illinois University Carbondale, works with four-year-old Andy on his speech during a recent session at SIUC’s Center for Autism Spectrum Disorders. Started in 2000, the center provides diagnostic, intervention and consultation services for children with autism spectrum disorders and their families. The center is also a training ground for graduate students in Behavior Analysis and Therapy and Communication Disorders and Sciences.

Photo by Steve Buhman