From research to real life

The 9th Annual Autism and Neurodevelopmental Disorders Conference took on the theme of "Bridging Services and Environment," highlighting how important coordinated, community-based care is for children and young adults with autism and those who care for them. The conference held in late July on the campus of Michigan State University brought together researchers, clinicians, and educators with those who have autism and their family members.

“Typically, as professionals, whether research or clinicians or educators, we can exist in these silos where there's limited interaction amongst groups. When you get a core group of people who have similar interests together, you really advance the science further and quicker than if you were operating alone,” said Barbara Thompson,  assistant professor in the Department of Pediatrics and Human Development.

“As such, we view this conference as an opportunity each year to set aside scheduled time, bring all the different groups together to the table at the same time to discuss what’s critically important to families and self-advocates, and present the state of the art programs and science,” said Thompson.

Marci Reinhart and her 19-year-old son Dylan attended the conference for the first time. “To have a conference like this, where there's people that are filling in the gaps for a parent, saying, ‘Hey, we have this available…. this is the kind of things our school is doing.’ It lets me know things I can do to get more involved. There’s more information out there for him and what his options are for now and later in life.”

Dylan, a recent graduate of Charlotte Public Schools, took part in a panel discussion featuring Superintendent Mandy Stewart and special education teacher Tami Nixon. The two presented on how Charlotte schools are integrating students with autism into their schools through Special Olympics Unified Champion Schools – a program built on social inclusion and acceptance through sports for athletes of all abilities.

“Dylan is very social, so even though he's graduated, we still come back and participate in track and field, or we help out with unified basketball,” said Reinhart. “Tami and Dr. Stewart have tried to do so much for inclusion. Like Tami said, it's all about changing perspectives and getting everyone involved. Differences mean nothing. Everybody's the same,” said Reinhart.

It’s those types of ideas and concepts that help bridge the families and those with autism to the clinicians and researchers working to help translate treatment and research into real-world impact.

Keith English, professor and chair of the Department of Pediatrics and Human Development, gives credit to his department’s founding chair William B. Weil Jr. for being a visionary pediatrician nearly 40 years ago who was committed to caring for children with autism as they grow.

English said Jane Turner, professor emerita, working with that mission saw the importance of bringing parents and professionals together for the first autism conference a decade ago.

“I think the genius of the parent-professional conference is that it also loops in researchers who are doing research about autism and neurodevelopmental disabilities. The point is, if you want to help people live happier and healthier lives, you need to understand their perspective and that of their families,” said English.

For researchers like Thompson, the conference is a way for her to hear personal stories from those with autism and the people who support them, which brings her research full circle.

“Our access within academia to interact with these families that are directly impacted is less than those who are out in the communities providing these services,” said Thompson. “I get better ideas of what would help the community. I think it makes my science better. It makes it richer; it makes it more relevant. I thoroughly enjoy the day, every single year. It's so enlightening.”

The 9th Annual Autism and Neurodevelopmental Disorders Conference is organized by the Michigan State University College of Human Medicine’s Department of Pediatrics and Human Development and sponsored by Henry Ford Health, MI Developmental Disabilities Institute, Michigan Department of Health and Human Services, Pine Rest Christian Mental Health Services, U of M Health Sparrow and Wayne State.

This story originally appeared on the College of Human Medicine website.