As clinical director at an IU School of Medicine autism treatment center, Naomi Swiezy is, by nature, a goal-oriented health-care practitioner. A researcher as well as a behavioral psychologist, her focus is on “research-based, empirically supported” approaches to treating the pervasive developmental disorder.
She uses the term “treat” advisedly. Like any expert in the field, she can only speculate on what causes the range of behavioral, social and intellectual impairments known as Autism Spectrum Disorders. Genetic predisposition triggered by unknown environmental factors is the prevailing wisdom. “Cure” isn’t a part of the vocabulary.
“It’s not about curing the autism,” Swiezy said during an interview at the Christian Sarkine Autism Treatment Center at Riley Hospital for Children in Indianapolis. “We don’t believe that’s a possibility.”
Autism is, in fact, a relatively new and little-understood condition, she said.
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While autism appeared in the literature in 1943, Swiezy explained, the American Psychiatry Association didn’t even define the Autistic Disorder diagnosis until 1980, with the publication of the third edition of its Diagnostic and Statistical Manual of Mental Disorders (DSM-III).
“At that point, that’s really when autism came to be officially defined as a disorder,” she said.
Asperger’s Disorder and Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) weren’t diagnostically recognized as Autism Spectrum Disorders until the DSM-IV came out in 1994, a mere 15 years ago.
“Although all of this was being talked about in the 1940s,” Swiezy said, “it wasn’t really until much later that there was a recognition.”
Swiezy has a doctorate in clinical psychology from Louisiana State University, where her mentor, Professor Johnny Matson, specialized in autism and developmental disorders. It was an opportune time to be studying behavioral psychology and autism.
"No one can say for certain what happens physiologically in the brains of those with autism."
“I was getting trained in the 1980s, and there was much less understanding than we even have today,” she said. “… I could see how positively the children were reacting to interventions, and the opportunity to teach other people that there really is hope for these children was really an outstanding opportunity.”
When Dr. Christopher McDougle, a 1986 IU medical school grad-turned-professor of psychiatry at Yale, came back to teach at his alma mater in 1997 and established an autism clinic, Swiezy saw another opportunity.
She contacted McDougle, who shared her vision of a multidisciplinary approach to treating autism, and she joined his clinic in 1998, adding a behavioral component to the treatment regimen. McDougle ascended to the position of chairman of the Department of Psychiatry in 2000. The clinic transformed into the Christian Sarkine Autism Treatment Center and moved to Riley in 2002.
Named after the autistic grandson of U.S. Rep. Dan Burton, R-Indianapolis, the Sarkine Center is one of the three largest facilities of its kind in the United States. The move to Riley and an accompanying expansion of services was underwritten by $1.8 million in federal funds that Burton secured.
The center’s Mission Statement declares: “Services are provided to individuals across the autism spectrum, including individuals of all ages, language abilities, and overall developmental levels. The general goal is to help children and adults with Autism Spectrum Disorders to achieve their potential and to participate as fully as possible in family, school, and community life.”
Throughout a 50-minute conversation in one of the Sarkine Center’s treatment rooms, Swiezy spoke candidly about the relative lack of answers to the most basic questions about autism. For example, experts don’t agree on incidence, she said. The best anyone can do is estimate and speculate.
“We don’t know how many people with autism there are in Indiana,” she said. The “best guess” comes from Indiana Child Count Data, an annual survey from the state Department of Education that is used to disperse special education funds. That data, she noted, is based on educational classifications and not medical diagnoses.
Child Count Data from the 2007-2008 school year show that one out of every 113 school children received special education under the “Disability Area” of “Autism.”
The best data on autism incidence, Swiezy said, are in two studies from the U.S. Centers for Disease Control (CDC) that put the count at one in 150 children. Published in 2007, the study analyzed children’s records in 14 states, not including Indiana.
But whether the actual number of children with autism is increasing is likewise unclear, she added. While the number of reported cases of autism has risen dramatically, other categories have dropped.
Child Count Data provided by the Monroe County Community School Corp., for example, has shown that students receiving special education for autism increased 360 percent from 1998 to 2008, from 51 to 184. But over that same period, students categorized as “Communication Handicapped” dropped from 636 to 465.
“It’s not necessarily that there’s a rise in autism and everything else is staying the same,” Swiezy said. “… It may just be that we’re getting shifts in categories and not necessarily shifts in numbers.”
The question of causation is also one for which no firm answers exist, Swiezy said. While research abounds, no one can say for certain what happens physiologically in the brains of those with autism.
"The American Psychiatry Association didn’t even define the Autistic Disorder diagnosis until 1980."
Sibling studies show genetic predisposition is a factor. But there are pairs of identical twins in which one has autism, and one does not.
“What experts pretty much agree is that there are multiple hits and multiple possibilities that impact on the brain,” she said, environmental pollution among them. “But then there’s too much variability among the children who have autism to be able to really say specifically this is the cause.”
The Sarkine Treatment Center’s 22 staffers utilize a multidisciplinary range of therapies for autism, including medication management, behavioral therapy and intervention, Swiezy said.
Because the cause of autism is unknown, “there is not any drug for autism per se,” she said. But many have been tested, and the Center participated in clinical trials of risperidone, the only drug that is FDA-approved for treating autism symptoms. It treats irritability and aggression.
“There's only one,” Swiezy said, “and that’s been recent.”
The primary focus beyond medication intervention at the Sarkine Center is Applied Behavior Analysis (ABA), used in the term’s broadest sense. ABA is often used synonymously with a specific therapy called Discrete Trial Training (DTT), Swiezy said. But it is only one of many ABA treatment strategies.
“When we talk about ABA, we talk about basically a toolbox of behaviorally based approaches,” she said. “Many different strategies fall under the rubric of ABA.”
ABA is a scientific approach for treating behavior disorders, including but not limited to autism.
“It’s definitely been the most studied behavioral method in the area of autism,” she said.
Discrete Trial Training was developed by Ivar Lovaas, a psychology professor at UCLA, Swiezy said. He recognized that children with autism have problems dealing with the big picture and developed techniques that encouraged learning through small, concrete steps that the children can understand and master, one at a time.
“They also do well with repetition, so DTT focuses a lot on repetition with the children,” she said. “... We add on a layer, and another layer, and another layer.”
DTT involves therapists working one-on-one with the children in controlled settings. But the “kiddos,” as Swiezy frequently refers to her patients, don’t easily “generalize” what they learn in the classroom to their everyday environments, such as home or school.
Other ABA tools, like Pivotal Response Training, apply DTT techniques outside of the typical clinical setting.
Another therapy Swiezy cited, developed at the University of North Carolina in 1960s, is called TEACCH, which stands for Treatment and Education of Autistic and Related Communication-handicapped Children.
TEACCH recognizes that children with autism process information better visually than they do editorially, Swiezy said, so it utilizes tools like pictures, cue cards and colors to enhance learning.
“The visual strategies are very potent,” she said.
Critical to the mission of helping autistic children and adults “participate as fully as possible in family, school, and community life” is awareness and understanding of those who live, work and interact with them, Swiezy said.
"ABA is a scientific approach for treating behavior disorders, including but not limited to autism."
“We do a lot of parent training,” she said. “The focus really is on providing tools that the families can use when they leave here.”
Parents can help the children generalize the skills they learn in therapy, so Sarkine therapists teach them necessary skills. The process includes “modeling” appropriate intervention techniques for the parents, “shadowing” them as they learn and eventually fading from the scene.
“We give them homework,” Swiezy said.
Educators have been another target group. A 2004 CDC grant facilitated a program called Hands in Autism that seeks to develop a training model for caregivers, such as teachers.
“Educational teams will come here in the summer and spend a week with us and work hands-on with kids,” she said.
In 2006, the Hands program began collaborating with Indianapolis Public Schools (IPS) to develop a classroom program for autistic students. IPS provided a classroom and interested teachers, and Sarkine therapists taught them intervention techniques.
The program started in 2006, Swiezy said. And now that the teachers have been trained and shadowed, “We’re at a point of very much fading.”
While so much is unknown about autism, one fact is that it is a lifelong condition, Swiezy said. And one of the more unique aspects of the Sarkine Autism Treatment Center is that it follows patients through adulthood.
"Parents can help the children generalize the skills they learn in therapy."
“At our center, we’re lifespan, so we do see patients through adulthood,” she said, noting that she sees patients today she's treated since arriving at the clinic 11 years ago. “We see a lot of adults.”
Another fact is that there is no cure, and there won’t be anytime soon.
“We’re treating the symptoms,” Swiezy said. “We’re not treating the disorder.”
Steven Higgs can be reached at .