Drexel researchers want to better understand barriers for screening and health care that people with autism face

Drexel University researchers have been awarded a $10 million grant from the National Institutes of Health to study barriers to care for people with autism.

Autism spectrum disorder is a neurological and developmental disorder that affects how people communicate and interact with others. Researchers don’t know what exactly leads to this altered brain development, but there is evidence that early detection and intervention can limit the disruption to people’s daily lives, said Diana Robins, the director at the A.J. Drexel Autism Institute.

“We know that children who start high quality, intensive autism-specific treatment very young tend to have better outcomes,” she said. For example, children who learn to speak by age 5 or 6 are far more likely to have fluent speech.

Robins and her colleagues will spend the next five years researching the challenges people with autism face to getting care throughout their lives. They are particularly interested in how other, common barriers to health care, such as poverty and institutional racism, affect access to care for people with autism.

The study will focus on three stages of life: screening in early childhood, adolescent and young adult health, and older adults’ health. They will examine how being a member of an underrepresented minority or economically disadvantaged group impacts services for autistic people.

Diana Schendel, a leading researcher at the Drexel institute, says that being a person of color or living in poverty can impact whether they have access to services. How those factors combine with barriers that autistic people face is a big focus of the study. “That’s what we hope to uncover,” she said.

While other researchers study the biological, genetic, and neurological underpinning of autism, the Drexel institute is focused on public health research that looks into health outcomes for people with autism.

The CDC’s autism surveillance program estimates that about 1 in 44 children who are 8 years old have a form of autism. But it is possible that the number is higher is because of barriers to getting a diagnosis.

“Society is still catching up with what is autism and how we identify autism,” Schendel said.

As part of their work, Schendel and Robins encourage people to think of autism as a difference in how some people’s brains develop — not an impairment.

For example, Robins said, some people with autism do not communicate with speech but are able to communicate by other means, such as with flash cards or computer software. Nonverbal communication can also be effective, if both people understand the approach, she said. The burden to understand one another isn’t only on the person with autism.

“It’s about the partnership between people who are trying to communicate with one another,” Robins said.