Indiana University Research & Creative Activity

Mind/Brain

Volume 30 Number 2
Spring 2008

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Scott Bellini
Scott Bellini
Photo courtesy IU School of Education

Christopher McDougle
Photo by Rocky Rothrock, Office of Visual Media, IUPUI

Andrea McDuffie
Photo courtesy IU School of Education

A generation ago, autism was diagnosed in four to five of every 10,000 American children. Today, the rate is closer to six or seven in every 1,000.

Beyond Words

by Elisabeth Andrews

A lifelong neurodevelopmental disorder, autism affects communication, social interaction, and sensory processing and is usually diagnosed in early childhood. Children and adults with autism often exhibit repetitive behaviors and restricted interests that contribute to the social withdrawal characteristic of the condition.

Despite intensive studies, researchers are unsure why the rate of autism diagnosis is increasing--in fact, the cause of the disorder itself remains unknown.

"We know there is a genetic component because the rate is so much greater for siblings," says Andrea McDuffie, an assistant professor in Indiana University's School of Education in Bloomington. Studies of identical and fraternal twins have further demonstrated this link by finding a much greater incidence of sibling diagnosis when a child with autism has an identical twin.

McDuffie says part of the increase in diagnoses can be explained by a broadening of diagnostic criteria as well as by greater understanding and awareness of the disorder, which was once mistaken for mental retardation or emotional-behavioral conditions like Attention Deficit Hyperactivity Disorder (ADHD) or bipolar disorder.

"But if [greater awareness] was the only reason, we would expect to see a plateau," explains Scott Bellini, also an assistant professor in the School of Education, and assistant director of the Indiana Resource Center on Autism (IRCA) at IU's Indiana Institute on Disability and Community in Bloomington. "Instead, we are seeing a continued increase." Christopher McDougle, Albert Sterne Professor and chair of the Department of Psychiatry at IU's School of Medicine in Indianapolis, sums up the state of speculation: "We don't know what causes autism. That's the truth," says McDougle, who is also founding director of the Christian Sarkine Autism Treatment Center (CSATC) at the Riley Hospital for Children. "Most disorders result from a combination of genetics and exposure, so we want to think along a similar model to begin to sort this out."

In the meantime, as they investigate and implement new and promising treatments, these IU researchers are focused on helping people with autism become as successful as possible. McDuffie, a speech/language pathologist who is also trained in early childhood special education, studies language acquisition in young children with autism. Bellini researches social skills training for children and adolescents with autism, and McDougle, through the CSATC, is working to develop pharmacological treatments.

Speaking Freely

McDuffie says children with autism may be familiar with a dazzling array of vocabulary, but may be unable to use words in everyday interactions.

"A child with autism might be able to sing the entire 'Star-Spangled Banner' but have little useful speech," she says, defining useful speech as "the spontaneous, frequent, and flexible use of words within the naturalistic context of social interaction."

She explains that children with autism are often unable to "disambiguate" the meanings of single vocabulary words: they have difficulty tying a new word that a conversational partner is using to the object or event that the new word references. Instead the children associate the word with the entire context in which they hear it. For instance, they may say "good morning," as part of a daily routine, but won't use the phrase in any context that differs from that specific routine setting.

In addition, McDuffie says, children with autism have "sticky attention"--they tend to focus with unusual intensity and duration on certain objects or activities. It can be especially difficult for caregivers to redirect their attention toward a social interaction.

One solution involves teaching caregivers to "follow the focus" of the child's attention and talk about whatever activity or object currently interests the child, McDuffie explains. Among children with autism, use of this "descriptive talking" method by parents has been associated with long-term gains in language skills.

"If your child is sitting on the floor spinning a top over and over, you need to sit down with them and talk about the spinning top. Rather than trying to change the child's focus of attention, talking about the child's current focus can provide a context for facilitating learning language," she says.

Another promising method, "linguistic mapping," requires caregivers to put into words the presumed meaning of their child's nonverbal communication attempts, such as stating, "You're thirsty" or "You want to go outside" in response to nonverbal sounds or gestures produced by the child. McDuffie's current research is measuring the effectiveness of descriptive talking and linguistic mapping as modes of language learning that can be implemented at home.

"Children with autism have impairments in social interaction, but that doesn't mean they have no social interaction," she says. "They definitely have feelings, and I think they do want to connect with other people. They may have the intent to communicate, but it's just so hard."

Making Connections

Bellini agrees that children with autism desire interaction, although researchers haven't always thought so.

"One of the main misconceptions about autism has to do with social desires and social communication," he says. "Researchers once believed individuals with autism did not want to establish social relationships, but most do indeed desire to make friends, although often they want to do it on their own terms. But then, so do I."

Bellini explains that social interactions require a certain set of skills that most children learn instinctively.

"Most of us learn our social skills simply by exposure to social situations," he says. "We pick up on how to respond and join in interactions with others. Our brains are seemingly pre-wired to acquire these basic social skills effortlessly. But individuals with autism are not learning simply through exposure. We have to teach these skills explicitly—skills like starting interactions, reading nonverbal cues, and taking the perspective of another person."

These skills are essential not only for positive peer relationships, but also academic performance and, later, vocational success. Identifying the best methods for teaching these skills is no easy task, Bellini says, because it's difficult for most people to imagine being without them.

"We're not instinctively good at teaching social skills because we're naturals," he says. "Most of us don't need to think about how we position our body, or how well we time our social initiations. It's like the old adage that the best athletes make the worst coaches."

Bellini's research demonstrates that one of the most promising methods is a technique called "video self-modeling." With this method, children are filmed performing social interactions with the aid of prompts from adults. The prompts are then edited out of the footage, and children are shown videos in which they appear to be successfully interacting with peers independent of adult assistance.

"Our research has shown this technique to be highly effective for teaching social skills, and for generalizing those skills to different environments and maintaining them over time," Bellini says. "Individuals with autism respond best to visual instruction. With video modeling, we are no longer telling them how to engage. They are able to watch it on video, and that's more effective."

In addition to his hands-on research with video modeling, Bellini has also conducted meta-analyses of other studies of social skills interventions, concluding that the most effective techniques are those employed in the child's usual classroom environment.

"This finding has important implications for school-based social skill interventions. Teachers and other school personnel should place a premium on selecting social skill interventions that can be reasonably implemented within naturalistic settings," he says.

Effective social skills training also requires normally developing children to be educated about interacting with individuals with autism.

"A key component to social skills training is teaching peers how to be more responsive," Bellini says. "It's not going to help if we send them out into a cruel and rejecting environment."

Finding Balance

In considering the environment that individuals with autism encounter, it's important to reflect on the mediating effects of sensory processing, McDougle says. Individuals with autism can have a range of sensitivities to internal and external stimuli that make controlling their behaviors and reactions very difficult, he says.

The CSATC has been a leader in developing pharmacological treatments to assist individuals with autism symptoms such as aggression, self-injury, inattention, and hyperactivity. McDougle's research group was a major contributor to the data that led to FDA approval of the first drug for the treatment of symptoms of autism, Risperidone. Previously prescribed for symptoms of schizophrenia, the drug has now been approved for the treatment of aggression, self-injury, and tantrumming in children ages 5–16 with autistic disorder.

"There hasn't been a lot of research into drug therapy for the treatment of autism, but we are one of the centers leading the charge in this area," he says. "It's an exciting, pioneering venture."

New therapies under investigation at the center include Atomoxetine (currently approved to treat ADHD) for the treatment of hyperactivity and inattention in individuals with autism, and the antibiotic D-Cycloserine, which has been used to treat tuberculosis and, surprisingly, may also have a therapeutic effect on social withdrawal.

The center is also in the early stages of including functional magnetic resonance imaging in some of its drug trials. Researchers at the CSATC will be able to view the neurological activity of individuals with autism to see if certain drugs affect how they respond to images of people exhibiting different emotional states. Individuals with autism are generally unable to "read" facial expressions, so these studies may be able to detect whether drug therapies can stimulate the area of the brain responsible for this type of facial recognition.

There is some risk, however, in being too successful in treating specific symptoms, McDougle says.

"You don't necessarily want to use medication to reduce all of the symptoms of autism, such as repetitive behavior," he explains. "Take me--as Dr. McDougle, I always wear a bowtie. Likewise, some kids with autism have things like hand flapping or rocking or spinning things or lining things up that they are using in an adaptive way--it makes them feel better. If we take that [behavior] away, what will they do when they are anxious? They might start hitting their head on the wall. So we really only want to treat something that's interfering for them, like lining their shoes up for hours and hours and not being able to leave the room."

New Directions at IU

As autism becomes a greater concern nationally, IU is developing more effective networks for research and treatment.

The CSATC, initially staffed by only McDougle, now boasts 20 personnel including four child and adolescent psychiatrists. The center serves about 1,000 child and adult patients in addition to providing training for teachers, parents, and clinicians.

At IU Bloomington's School of Education, undergraduate and master's students in the special education program will soon be able to follow a course of study preparing them to work with children with autism. McDuffie is chairing the committee to develop the curriculum with the aid of a Commitment to Excellence grant from IU. She offered the first course, an overview of autism spectrum disorders, in fall 2007.

Additionally, Bellini and colleagues in the School of Education and the IRCA are building a research and training center within the school's Institute for Child Study. The Social Skills Research Center, opening in 2008, will develop best practices in social skills training and teach those practices to professional educators through hands-on workshops.

"With respect to the potential of individuals with autism, I think the sky is the limit," Bellini says. "The success of a person with autism is going to be dependent upon how effectively we are able to deliver services."

Elisabeth Andrews is a freelance writer in Bloomington, Ind. For more information about autism, the researchers recommend the Web sites researchautism.org, autismspeaks.org, and the CSATC's site at www.iupui.edu/~psycdept/autism/index.htm, which links to other resources including the IRCA.