Autism researchers seek help with study

Jennifer Elder still remembers when a 4-year-old autistic boy looked into his father’s eyes for the first time and said, “Daddy.”

That was about 15 years ago, said Jennifer Elder, a registered nurse and UF researcher. Since 1981, Elder has worked with children with autism spectrum disorder and their families, teaching children on the spectrum how to communicate and socialize in better ways, she said. In August, Elder received funding for a new approach to autism research focused on the community.

The Patient-Centered Outcomes Research Institute gave Elder $90,000 to connect community members, like service providers or people who have family members with autism, with researchers, she said. The idea developed from concerns that researchers with the National Institutes of Health, like Elder, weren’t looking into the topics important to people with autism, she said. The new model aims to hear what issues people care about most.

“This whole initiative is to engage them from the very beginning, when we are first developing the research question, all the way through conducting the trials,” Elder said.

Elder and her team are currently meeting with families from the rural communities of Palatka, Live Oak, and Crystal River, Florida, where children with autism are not receiving the services they need, she said.

Elder said she hopes her research will lead to a better understanding of autism, find new ways to make earlier diagnoses and improve the quality of life for children and their families.

“We’ve found that there’s a clear evidence that the earlier we can get a definitive diagnosis, the earlier we can get treatment, the better the individual does over a lifetime,” Elder said.

Jaime Kulik, the disabilities co-chair of the UF College Democrats, has a cousin on the autism spectrum. This inspired her to volunteer to help people with autism and other disabilities, she said.

The 19-year-old UF health science sophomore said people with autism don’t typically feel the same pressures as others to follow social cues, because they don’t always perceive them.

“It’s important to realize people with autism and other disabilities have a lot more in common with others than they have differences,” Kulik said. “It’s important to focus on what they can do rather than on what they can’t do.”

Elder said the families of children with autism are heroes.

“They have incredible challenges, and they’ve been some of the most resourceful people I have ever met,” she said. “They’re just amazing. They’ve kept me involved all these years, because I just have great respect for them.”