News and Progress

MU to serve children with autism through new interdisciplinary research center

A new gift brings together health professionals, educators, early childhood experts and many others at MU to serve children with autism

Sept. 27, 2005

Elijah Wingo, 9, watches as Judith Miles, J. Lavenia Edwards Distinguished Professor of Pediatrics, checks his reflexes. Elijah also gets care from MU dietitians, who help him manage his autism through a diet without oats, barley, wheat, rye or milk. Photo by Rob Hill

Families of children with autism face many challenges as they seek the best ways to deal with the mysterious and often isolating disorder, but an announcement April 29 provided a new reason to be optimistic. On that day, Chancellor Brady Deaton announced an $8.5 million gift from William and Nancy Thompson to fund the Thompson Family Center for Autism and Neurodevelopmental Disorders.

“Ongoing, interdisciplinary research at MU has the potential to produce important breakthroughs in several key areas of autism studies that will affect children across the state of Missouri and nationwide,” Deaton said. “This center will integrate autism research, service and teaching at the University. We know this will make a tremendous difference for those affected by this condition.”

A Lock Requiring Many Keys

Autism is a complex brain disorder that manifests itself in different ways in different people. People with autism generally have impaired social skills and difficulty relating to others. They often have communication troubles, too. Some children with autism do not speak at all, and others struggle to use language effectively and to discern the meaning of other people's gestures and social cues. Many people with autism cling to routine and demonstrate compulsive, repetitive behaviors. Taken together, these symptoms can affect cognitive development, language development, motor development and social development.

According to the Centers for Disease Control and Prevention, credible data suggest that as many as one in 166 individuals has some sort of autism spectrum disorder. Because of the severity and prevalence of the condition, autism is now considered a pressing national public health issue.

The complexity of autism makes it a difficult disorder for health professionals, educators and researchers to tackle. Most scientists now believe that both genetic and environmental factors play a role, but pinpointing any specific gene or external trigger with certainty has thus far proved elusive.

Janet Farmer, professor of health psychology and director of the new Thompson Family Center for Autism and Neurodevelopmental Disorders, says the complexity of autism demands an interdisciplinary approach to both research and treatment. She notes that children with autism may need care not only from physicians to prescribe medical treatments but also from a speech therapist to facilitate communication, a psychologist to encourage social and adaptive cognitive skills, an occupational therapist to help with activities of everyday life, an educator to overcome learning differences and a dietitian to develop specialized diets. Therefore, the center will bring together faculty from the School of Medicine, the School of Health Professions, the College of Education, the College of Human Environmental Sciences and the Truman School of Public Affairs.

“It's not possible for a single discipline to deal with all these issues,” Farmer says. “Interventions must be provided in a coordinated way by a team of professionals to meet each child's individual needs.” To ensure that the center stays focused on the needs of families, parents will be encouraged to partner with professionals in all aspects of their children's care, and parent representatives will serve on the center's advisory board.

From Dream to Reality

An interdisciplinary autism center has been the dream of many at MU for years. When Stephen Jorgensen became dean of the College of Human Environmental Sciences in 2001, he led a task force to investigate the feasibility of building an expanded child development lab for child care and early childhood education and infusing the lab with strong research capabilities. Members of the task force realized that MU's autism experts, including Farmer and Judith Miles in the Department of Child Health, were interested in building a continuum of care for children with special needs, and they invited these faculty members from other schools and colleges to join the task force. “We developed a vision of a facility that would marry these two efforts in a research environment,” Jorgensen says. Eventually, nearly 30 people from numerous disciplines were serving on the committee. When the Thompsons expressed interest in funding an autism center, the dream finally started to become a reality.

The Thompsons' gift creates two endowed chairs in the School of Medicine and provides funds for five Thompson Research Scholars. Researchers from across campus can apply for the scholar positions, which will provide resources to start autism-related programs or projects. The gift will help integrate different clinics and services and will provide many educational opportunities for MU students, practicing professionals and families.

Two-year-old Blake Hinkel, who has autism, sits with his mother, Lora, and plays with child neuropsychologist Janet Farmer, director of the Thompson Family Center for Autism and Neurodevelopmental Disorders. The center will provide multiple services for Blake and his parents and other families coping with the disorder. Photo by Steve Morse

Putting Research Into Practice

Although the gift predominantly funds research, the expectation is that research will allow the center to constantly refine the clinical care it provides patients. As director and co-founder of the MU Children's Hospital Center for Autistic Disorders (which will be absorbed into the broader-reaching new Thompson center), Miles, MD '75, knows well how research and clinical practice can inform each other. For a decade, Miles' center has asked the families of each patient to participate in autism research. “Over the years, we only had one family, out of almost 700, choose not to do that,” she says. “Families of children with autism are desperate for us to give them answers.” The Thompson center will work in the same way as Miles' clinic. Research will create better treatments for patients, and families who volunteer can participate in further research.

Since the announcement of the Thompsons' gift, the waiting list for Miles' clinic has grown to more than 100 people, including children from out of state. The immediate response has been a bit overwhelming, but as the new center gets off the ground, Miles' clinic will be able to shift its nonmedical services, such as counseling parents on how to deal with schools, to others at the center who specialize in those areas. Doing so will free the physicians to concentrate on their own specialties and thus increase the clinic's capacity. Miles will see patients as always but will begin to spend two-thirds of her time on research. “I could easily spend 100 percent of my time serving patients, but that's not honoring our responsibility to seek answers,” she says.

Leaders of the autism center also recognize their responsibility to teach. Students will serve in the clinics and participate in research activities. Farmer and others are developing curriculum for interdisciplinary seminars on autism and will continue educating future leaders in the field through a federal interdisciplinary training grant. But the center is designed to reach beyond MU as well. Faculty already consult with teachers, health professionals and families across the state and assist school administrators and state officials in shaping policies that benefit all children, both those typically developing and those with special needs. “Our goal is to provide the best quality service here and share that with the community,” Farmer says. “We hope to be a resource for people across the state.”

Looking Toward the Future

The University is currently looking for temporary space for the center. Jorgensen says the goal is to have a permanent home within the next five years.

“This is the first lap of a long race,” Jorgensen says. “We still have a long-range need to fund the building.”

The building will integrate the clinics and researchers from different disciplines to create a central, family-oriented center providing children and their parents with multiple services, what Miles describes as “wrap-around care.” It also will house the child development labs, serving typically developing children and children with neurodevelopmental disorders and providing researchers with participants for studies on autism as well as other issues.

Farmer knows that achieving the goals of the Thompson Family Center for Autism and Neurodevelopmental Disorders will take great effort, but she is confident the center will realize its potential.

“Interdisciplinary work is challenging, but it works,” she says. “We're really excited about all the things we can do to make a difference for children and families.”