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 Autism Center offers families new options for diagnosis, treatment
By kate hill
COLUMBIA — When Larry Stephens was 6 months old, he didn’t respond to the loud clang of pots and pans hitting the floor. The doctor thought the chubby blond baby was deaf. “He wasn’t,” said Jan Stephens, Larry’s mother. “He was just ignoring the rest of the world. He was in his own world.” By the time Larry reached 18 months old in 1980, he had been diagnosed with a behavioral disorder, which was later narrowed to an autism spectrum disorder, because of his aggression and hypersensitivity. “When he was young, Larry truly feared people,” Jan said. Even taking him to the grocery story was a struggle, she said. He cried and threw fits because of the overstimulation from noise and crowds of people. Jan would lose Larry in the store when he would run for the cash registers. “He knew the cash register meant that the exit was nearby,” Jan said. Had Larry been born 20 years later, Jan Stephens might have had an easier time finding help to care for her autistic son because more resources are available, including some in Columbia. MU has been an instrumental player in providing care to families affected with autism spectrum disorder. MU pours resources into treatment, training and research to better understand the complex disorder. UNDERSTANDING AUTISM In some cases, such as Asperger’s Syndrome, the disorder can be characterized by above-average abilities in a specific area such as music or math. The person also has average language skills, but communicates in an abnormal way, focusing on one subject in a conversation or using different inflections. Social interaction skills can also be impaired. Since Larry’s diagnosis, the incidence of autism in American children has consistently risen. Reliable statistics for earlier years are shaky. Until 1993, autism spectrum disorder fell under the blanket of other disorders such as mental retardation. But in 2004, one out of 166 children was diagnosed with autism. Today, one in every 150 children lives with the disorder, and about 34,000 Missourians have a form of autism. As the prevalence of the disorder has risen, MU has used its resources to meet that need. “The University has been instrumental in supporting the response to autism in Missouri,” said Julia Kaufmann, director of autism services for the Missouri Department of Mental Health. Through the tinted double doors of the Thompson Center for Autism and Neurodevelopmental Disorders in Columbia, a soft, stuffed Clifford the Big Red Dog and a ride-on giraffe welcome families. The center was founded in 2005 through an $8.5 million gift from William and Nancy Thompson to the For All We Call Mizzou Campaign. The center offers 15 services in various aspects of care, including medical treatment, nutritional guidance, intense behavioral interventions, education and speech and occupational therapies. The Thompson Center offers Missouri families a place to help to deal with autism spectrum disorder. To date, the center has seen children from more than 50 Missouri counties and at least seven other states. MEETING THE NEED Insurance didn’t cover the $150 a week necessary for Larry’s treatment, transportation and schooling. “I decided to be a career woman to pay for it,” Jan said. She worked as a sales representative at ACF Metals to help pay for Larry’s schooling at Childhaven — a private school for children with disabilities — in St. Louis, where the Stephenses lived. When Larry was a child in the 1980s, Jan said, autism treatment was mostly private. Parents had to seek out options like occupational therapists and educators on their own. “Nobody gave me an instruction book for him,” she said. “I was constantly fighting at schools to get academics as opposed to life skills,” Jan said. At home, Jan helped Larry practice reading and controlling his temper. “I worked with Larry until he went to bed every night,” she said. At the library, Jan would research treatments that she could do at home. She put Larry on the Feingold Diet, a regimen that cuts out all artificial colors, flavors and preservatives. The pediatrician told her she was crazy, but she wanted to try anything that might help Larry. She noticed an immediate change in his behavior — his attention span increased, and he calmed down. “There was a lot of sacrifice as a family,” Jan said. “It took extensive treatment and training through the years to get him to be socially accepting.” Now families can find help in Columbia. The 29 faculty and 35 staff members — including researchers, educators and health care professionals — come from a range of programs at MU. “When you put yourself in the families’ shoes, it explains why it makes sense to pull in these people from across campus,” said Janet Farmer, director of the Thompson Center. Farmer said, parents tell her two of the most challenging parts of dealing with autism are waiting for a diagnosis and finding funding for treatment. With few people in the state qualified to make a diagnosis, families get put on waiting lists. Getting an early diagnosis is key in treating autism, she said. The best treatment is behavior-intensive — helping children learn how to develop communication skills and act appropriately in everyday situations like at school or in the community. The younger the child, the better the chance for a more successful the treatment, Farmer said. Most insurance companies don’t cover the costs of intensive behavioral therapy. But Farmer said that the Thompson Center tries to help families find the resources to afford services. Farmer hopes to make the center a nationally recognized facility. And in some ways, she already has. The center has also received several grants to conduct research that will garner attention, including $1.6 million from the Simons Foundation. The research will focus on a genetic study of the DNA of families who have at least one member with autism, in hopes of finding a cause. Twelve other universities are participating in the study, including Harvard, Columbia and Yale. “The university has been turned to a lot to help facilitate things,” Farmer said. In 2002, MU took part in a symposium to shape public policy regarding the response to autism in Missouri. Out of the symposium came the founding of the Missouri Autism Research and Response Agenda. The goal of the symposium was to take a collaborative approach to addressing autism by developing standardized statewide screening methods, establishing a voluntary registry in Missouri to help track the prevalence of autism and designing an information-sharing system among doctors, educators, government and families to promote more effective and affordable care. Now MU faculty are developing a model for an autism spectrum disorder registry, the Interactive Autism Network, that could provide beneficial information through tracking cases of autism. In 2006, with funding from the Missouri Department of Mental Health, MU faculty initiated the Missouri’s Rapid Response Initiative for people with autism spectrum disorder. The pilot project, aimed at children up to 5 years old in Boone County, focuses on promoting early intervention. The program built a network of groups — including educators and health care professionals — who could either identify symptoms or offer treatment. The project has been successful, Farmer said, and Gov. Matt Blunt recommended an award of $180,000 to the Thompson Center to expand the program across the state. Along with Cardinal Glennon Children’s Medical Center in St. Louis and Children’s Mercy Hospital in Kansas City, the Thompson Center has also been regarded as one of the three Autism Centers for Excellence in Missouri, recognized by the Missouri Department of Mental Health. The three facilities were chosen because of their expertise and experience with autism. Funding will support programs that help to decrease the wait time for diagnosis and help develop a standard of care. Families in need of a diagnosis or a treatment will know that they can go to any of the three centers and receive a standard, quality level of care. The Thompson Center is the largest of the three facilities. From July to December 2007, the center evaluated 202 children suspected of having autism spectrum disorder. In the past seven months, the Thompson center has served 397 children with autism spectrum disorders. MOVING FORWARD He thrives as an athlete and spokesman for the Special Olympics. He even writes his own speeches. Now, at 29, Larry works five days a week as a janitor at the MU Student Recreation Center. His family’s commitment and hard work have helped Larry live successfully with autism. But they had to do it on their own. In the future, Farmer said she hopes that MU faculty can implement programs that meet the needs of adults living with autism spectrum disorder. She sees a need to focus on the transition into employment and the community. Farmer also hopes that by studying early brain development, the mystery of autism can be solved. There is no one cause of autism, she said. “Fundamentally, this is a genetic disorder,” she said, though unknown environmental factors may also be involved. Farmer said, in the past, childhood cancer was treated as one disease and 90 percent of children died. Now that doctors understand the different types, 85 percent of children survive. Similarly with autism, Farmer said, examining all the possible causes will help to develop better, individualized treatments. “We’re not talking about survival here,” she said. “We’re talking about quality of life.” Autism Timeline:
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