An SIUC project helps autistic children join the mainstream of life.
 

Four-year-old Ricky is a master of children’s computer programs, and he can already read. He loved his recent trip to the zoo—asked what animals he liked best, he replies, "The elephants!"—and he willingly shows off his new wristwatch, which he explains is a Blue’s Clues watch. 

Ricky has a winning smile and a bright future. He’s also autistic.

On this hot day in July, Ricky’s father has brought him to Carbondale for his twice-weekly therapy session with the Childhood Autism Project, run by SIUC’s Rehabilitation Institute. Led by Anthony Cuvo, a behavioral psychologist and professor of behavior analysis and therapy, and Rebecca Trammel, a speech pathologist and clinical instructor in communication disorders and sciences, the project helps autistic children while training graduate students to work with them. 

Autism is a baffling disorder that interferes with communication and social functioning. Symptoms appear before age 3, and three-fourths of the children affected are boys. Sometimes signs of autism are obvious from birth—infants will be unresponsive to their caregivers. In other cases, a toddler who was developing normally will regress, sometimes dramatically. "It’s heartbreaking," says Trammel.

Children with autism may not speak at all, and those who do speak have trouble using language to communicate. They often exhibit what’s called echolalia: repeating what is said to them, or parroting phrases from TV programs or movies.

These children have impaired social skills. As Cuvo explains, "They avoid people, they don’t make eye contact, they may not want to be held or touched even by their parents. They need direct instruction to do things that [nonautistic] kids will pick up just by observing others."

For autistic children, who have an unusual need for order, any deviation from routine can be traumatic. They may be hypersensitive to noises, smells, tastes, or physical contact. Some of them engage in stereotypic behavior: odd, repetitive actions, like flapping their hands or spinning a toy over and over. Stereotypic behavior can be self-injurious, such as repeated head banging or hitting oneself. Just as alarming is that many autistic children have little sense of danger and a high tolerance for pain.

It’s been estimated that as many as 75 percent of autistic children also are mentally retarded, a figure that Trammel questions. "I think the face of autism is changing," she says. "I’m seeing more high-functioning children coming through our door." And as children learn to communicate, their I.Q. scores typically climb.

Symptoms can vary significantly from child to child and can be mild or severe. Because of that variability, autism is more frequently referred to as autism spectrum disorder.

When Ricky first came to the Childhood Autism Project at age 3, he seldom communicated. Although he could repeat entire videos word for word, says his mom, "He couldn’t tell me his diaper was wet or ask me for an apple." He would fixate on things, staring out the window or at his own reflection for hours. "When he looked at you, he looked through you," she adds.

The need for professionals trained to work with autistic children is acute: for unknown reasons, the incidence of the disorder has been skyrocketing worldwide. In the United States it’s now estimated at about 1 in 200 children, Cuvo says. If you don’t know anyone with autism today, you likely will in the years ahead.

Cuvo and Trammel’s goal was to create a treatment project based on "best practices" from the research literature, evaluate its effectiveness, and lay a foundation for experimental research, which began this fall. The project’s record is excellent: all of its older children are included in regular classes, even though some of them were nonverbal at age 3.

Children with a diagnosis of autism first go through a screening process at SIUC’s Clinical Center. Rehabilitation faculty Ruth Anne Rehfeldt and Diane Muzio supervise assessments of behavior and language skills, respectively, and then make joint recommendations for treatment.

Younger children—two- and three-year-olds—who are referred to the project begin with individual therapy. "The most basic level is interacting one-on-one with a familiar adult," says Trammel, "trying to get some words, get them to talk, to imitate. We structure the environment so the maximum amount of language can occur."

The staff also do functional assessments: trying to pinpoint what specific variable accounts for a given problem behavior, and finding ways to change it. To take a simple example: an autistic child who screams over washing her hands may be repelled by the smell of the soap or the temperature of the water. Changing the variable can modify the behavior. In other cases, as Ricky’s mom notes, "Learning how to redirect the child is key" to changing behavior.

The team motivates children by a combination of incentives (such as favorite toys and foods) and deprivation—holding things back. On the day that I’m visiting, graduate students Angela Moore and Marianne Sewing are working to teach 3-year-old Zachary to sign and say the word "More." When he wants a drink, Angela gives him just a sip at a time, creating repeated opportunities for him to ask for more. "We get toys with pieces and have the child request each piece," says Trammel. "With the painting, he has to ask for more paint."

"One of the reasons requesting is so important is that it shows the child that he can control his world by asking for what he wants," says Cuvo. That rewards language use and reduces problem behaviors.

Thus Angela and Marianne are also teaching Zachary to use a picture exchange system in which he can use cards to request things such as juice. This setup, which goes home with him, will help bridge the communication gap until his speech skills are more developed.

Parents, along with Cuvo and Trammel, watch their child’s sessions on a video monitor in a room adjoining the therapy room. They discuss what’s happening and learn how to continue the instruction at home, which is crucial to the child’s progress. The parents let the staff know about problems and concerns and what’s going on in the child’s life—information key to planning sessions and setting goals.

As Ricky’s father stresses. "Parents have to stay on top of things. We have to be involved."

As soon as possible, the child joins group sessions a couple of times a week with two or three other children. Several graduate students work with them, leading the activities, cuing appropriate responses, and recording data. 

The Autism Project offers two group therapy labs. The Lab to Promote Social Interaction works with preschoolers. The first focus is on getting the children to tolerate close proximity. Then they can move on to sharing things, playing cooperatively, and learning to converse.

"We have to teach the kids social interaction," says Trammel. "It doesn’t come from just watching, or even from us telling them to do it. We have to do the prompting and give them the words. They practice them, and hopefully they learn to generalize [to other situations]."

Older children who are in kindergarten or first grade attend the project’s Lab to Support Full Inclusion. "What we do here is teach children how to go to school," Cuvo explains.

Besides conducting sessions on campus, team members visit each child’s school twice a week, working on-site with the child and his or her teacher. Seeing what things the child has trouble with allows the team to plan new goals for the lab sessions. For example, when the team found out that 5-year-old Elizabeth froze when it was her turn for show-and-tell in kindergarten, the group simulated show-and-tell in the lab. "We’ve even practiced trick-or-treating," says Trammel.

Every individual or group session has multiple goals and is structured to the point of being scripted. Sessions blend what’s called discrete trial training—focused question-and-answer instruction—into fun activities that promote language use and social interaction. 

For instance, one group session uses a cookie-decorating activity in which the children must ask each other for the icing, the sprinkles, and so on, in order to complete the task and get to eat the cookies. Specific goals are for each child to look at the person he’s addressing, to use the other children’s names when asking a question, to respond when asked for something, and so forth. Cookie-decorating proficiency is not the object.

Because it’s summer break, Ricky’s session today is individual therapy. It goes well—a sequence of games and art activities designed to help him understand prepositions and to answer questions beginning with where, when, and what. (Children with autism typically have trouble with prepositions, pronouns, and other words that express relationships.) 

Ricky has come a long way. When he first joined group sessions, he spent his time under a table or in a corner. Now, says his father, "If he sees somebody in the corner, he goes over and finds out why."

"It was a turning point for Ricky to go comfort someone else," Trammel says. "He’s gone from not wanting to be with other kids to enjoying it."

Cuvo credits the project’s success to its interdisciplinary approach. Sessions usually pair graduate students from the Behavior Analysis and Therapy (BAT) program and the Communication Disorders and Sciences (CDS) program. Cuvo and Trammel critique each session with the students, who often have prior teaching and special-education experience.

This semester, the team has begun formal studies comparing the effectiveness of different instructional methods for children with autism. The project also is expanding its services, thanks to a multi-institution grant from the Illinois Department of Human Services through the Hope School in Springfield, a private institution serving people with developmental disabilities. With the SIU School of Medicine and the University of Chicago medical school, these institutions are developing an autism treatment model for statewide adoption.

"You can’t separate teaching, research, and service in this lab," says Cuvo. "What I teach in my classroom, the students bring in here and apply, and what we learn here comes back to my classroom."

And it all equates to a better quality of life for kids like Ricky.
 

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