When Judy Guion-Utsler heard about her son’s diagnosis, she just wanted to find a “cure.”
Her son, Wesley, was diagnosed in 2002 with PDD-NOS, or pervasive developmental disorder-not otherwise specified. Years later, PDD-NOS would be folded into a broader classification called autism spectrum disorder (ASD).
“We wanted something that would make autism go away,” she recalls. “We wanted him to be typical.”
But as time went on, she came to realize that autism didn’t need to define Wesley — it’s just part of who he is.
“After a while you begin to recognize that your child is your child and that their identity is informed by their challenges,” she says. “It’s not a deficit. It’s just a difference.”
So instead of struggling with how to deal with her son’s autism, she embraced it. That’s when she turned to Ohio State’s Nisonger Center, which has been at the forefront of research in the area of clinical trials and evaluating treatment options for ASD. The Center works across disciplinary lines at Ohio State to make lives better for families affected by autism.
“Nisonger then became a contact point for helping us find resources for Wesley, for keeping us in the loop about what kind of research was out there,” she says.
Wesley took part in his first research study at Nisonger in 2008, which involved taking a medication and measuring its effects. Eventually, Wesley took part in two more research studies, which also focused on the effects of different medications.
“The reason we were so keenly interested in having him on research studies is because we value what is learned from research and how it can affect hundreds of thousands of other people,” Guion-Utsler said.
While the medications didn’t have a big impact on Wesley, his mom says that just participating in the research was a big step.
“Participating in (the studies) has made him self-confident, able to speak for himself, given him opportunities to talk about how he feels about things,” she says. “And I think those are really good for his sense of independence and his own voice.”
Now 18 years old, Wesley is a junior at Thomas Worthington High School and thinking about his post-graduation plans — possibly pursuing a career related to history or public service.
“There are challenges associated with autism, but the autistic identity is a valuable part of our culture. It’s a valuable asset to the diversity of human experience,” she says.
“My son is compassionate, he’s funny. He’s genuine, he’s really kind. He’s doing well in school. He’s going to be a productive part of our society.”
A multi-disciplinary effort
At any given time, Ohio State has multiple researchers in a variety of disciplines who are focused on autism-related research.
“Ongoing research into the study of efficacy of available treatments and interventions is greatly needed to expand our ability to address the core features of autism and improve the quality of life of these individuals and their families,” said Dr. Marc J. Tassé, director of the Nisonger Center.
Dr. Jill Hollway is a research assistant professor of psychiatry and behavioral health and is studying how essential oils can potentially relax children with ASD.
“There are a lot of parents out there using essential oils. It’s important to do this study because people are using their resources to purchase them,” she says. “We need something definitive to say the essential oils are useful for increasing relaxation and improving sleep.”
Other recent studies by Ohio State researchers showed a common drug used to treat diabetes is also effective in helping overweight children with ASD.
A changing research landscape
Ohio State researcher Dr. Luc Lecavalier has been focused on ASD research for two decades. During that time, he’s noticed huge changes, from general awareness of ASD to more funding for research.
“It’s just a completely different landscape than what it was 20 years ago,” he says. “Even the way that we define the disability that we’re studying has changed.”
One of Lecavalier’s recent studies focused on parents who have children with ASD. The research involved teaching parents better ways to handle some of the behavior problems associated with ASD.
“A lot of kids with ASD have behavior problems like aggression, tantrums, hyperactivity,” he says. “We devised a program that would train parents on how to deal with these behaviors.”
Lecavalier says the program was largely a success and led to fewer behavior problems with those children. “If you can curb those behavior problems when they’re young, they may not need to take medicines down the road,” he says.
As Lecavalier and others across Ohio State continue their work, they’re hopeful that the dedication and collaboration of people from across the university will help Ohio State discover answers to some of ASD’s remaining questions.
“We’ve made a lot of progress in understanding causes and treatment,” Lecavalier says. “The cause still remains elusive, but we’ve still made a lot of progress toward that end.”
Through its research, resources and creativity, Ohio State experts are leading the way in raising awareness about autism. This month we highlight the progress being made as part of national Autism Awareness Month.