Autism is an overwhelming diagnosis for parents and families who receive it, noted Sherry Moyer, executive and research director of UT’s new Center for Excellence in Autism.Many parents of a child with autism don’t immediately realize what they face, she added: “You’re talking cradle-to-grave care. At some point, one parent might have to quit a job to care for the adult child because there are no services and the child can’t be left alone. They have to choose between planning for retirement or planning for their child’s lifetime care.”
That’s the underserved need behind UT’s first coordinated autism program, part of the Department of Pediatrics. As Moyer explained, “Our primary focus will be on building a network of services in the region, focusing on the entire life span of services — because everybody grows up; kids become adults. When they do, the number of available services is much smaller.”
Professionals in the field, she noted, talk of “a coming tsunami, a million and a half children with autism who will become adults in the next seven years or so. We need to be prepared.”
Preparation was central in laying the groundwork for the center, noted Dr. Joan Griffith, chief and interim chair of the Division of General Pediatrics. Working solo initially, then adding input from local autism service organizations, a consortium representing an internal advisory working group produced a mission statement and objectives. “It is still a fluid document,” Griffith noted.
Griffith pointed to funding from the U.S. Department of Health and Human Services, and recognition from state service organization OCALI, the Ohio Center for Autism and Low Incidence. “The support has helped spur a sense of momentum within the University that will be critical to creating a quality, affordable service to the community,” she said.
Following a national search, Moyer assumed the directorship in February. “We’re in the middle of strategic planning, determining our place within the autistic community in northwest Ohio but also in the national arena,” she said, adding that UT would be taking a leadership role: “We will do everything we can to help support the growth of services, research and advocacy because just as important as service delivery is the regulatory and legislative support for those services.”
Building on existing services will be vital, she said. “There are folks who do pieces of the necessary services beautifully here in the community. In particular the Autism Society of Northwest Ohio does a great job of sharing resources. We can take that further with educational resources to complement the existing services.”
She’s especially excited about the potential for research synergies: “Education, occupational therapy, medicine, psychiatry, biology, pharmacology, social work, physical therapy — there won’t be too many departments that won’t be playing an active role in collaborations.”
As the mother of an adult son with Asperger syndrome, Moyer understands the lifetime of challenges facing parents of a child with autism — and the question of what happens when the child is grown. “Everything we do today for the youngest child sets the stage for how well that person will be adjusted as a teenager and adult,” she said. “We have to assume that down the road, the family will not be there to shelter them, so we have to help them develop the skills for life.”
The goal is to create an environment for success, she said, with every person living with autism having access to whatever support is needed. “I don’t want anyone left helpless. Making them as successful as they can be — that’s the very best we can hope for.”
Ten years down the line, she sees the UT Center for Excellence in Autism as being a medical destination: “When people around the country think of the life span of autism and the need for successful navigation of resources, I want them to think, ‘Oh yeah — we’ve got to talk to UT.’”