Summer Scholar Gets to the Root of Medical Bias for Patients with Autism

According to a Swedish study conducted by the Westminster Commission on Autism, people with autism spectrum disorder (ASD) have poorer health outcomes and die on average 12 years earlier than the general population. While a number of health problems related to an earlier death can be unexpected and untreatable, a large number of the causes stem from unequal care provided to ASD individuals by healthcare professionals. 

Saint Joseph’s University Summer Scholar Samuel Vizzeswarapu ‘23, a biology major minoring in autism behavior studies who will be attending Sidney Kimmel Medical School in 2024, is currently researching the medical bias toward individuals with autism spectrum disorder in the field of healthcare. 

“People with autism make up a significant chunk of the population and, as healthcare providers, we have a responsibility to make sure that everyone gets equal care,” says Vizzeswarapu. 

Eighty percent of autistic adults reported difficulty visiting a general practitioner in part due to the waiting room environment, not feeling understood, and difficulty communicating with a doctor. A large part of Vizzeswarapu’s research is to uncover the root cause of why individuals with ASD experience these situations in a healthcare setting. 

“We’re looking at PT, pharmacy and nursing professionals because we want to see if the bias toward people with autism affects the care they give those individuals” says Vizzeswarapu. The research is being conducted via a survey that has been shared to local healthcare facilities.

“We have a survey that we’ll be sending to healthcare providers to learn more about their knowledge of autism and how they feel about treating patients with autism,” says Vizzeswarapu. “In my experience, when talking to healthcare professionals, a lot of them are very open about the fact that they just don’t have the training to properly help people with autism.” 

Some of the questions in the survey include: How much training have you received on neurodiversity; how much do you know about autism spectrum disorder; how does your treatment change when interacting with a patient with autism; do you direct your communication to the patient themself or a guardian; and more.

“We found that a lot of times, the individual with autism spectrum disorder won’t get spoken to at all, resulting in a big gap of information, which leads to misdiagnosis,” states Vizzeswarapu. “In the survey, we are trying to pinpoint where that gap specifically is and what the physicians feel like they’re lacking. The survey results will allow us to propose a curriculum that can help fill that gap.”

Samantha Riggleman, PhD, BCBA, assistant professor of special education and autism behavior studies program, is advising Vizzeswarapu’s Summer Scholars research. 

“Looking at the biases in the medical profession, it’s really important to also understand the big picture. In some of Samuel’s research that he’s done while digging in the literature, he’s really noticed that a lot of curriculum does not include any information about neurodiversity or autism spectrum disorder, so healthcare workers are often uninformed of how to interact with these patients and some of the behaviors they see from individuals with autism,” says Riggleman. “I think that largely is a big picture of this, to help inform the field, more so not at the grassroots level but at the curricular level.” 

The preliminary data gathering for this survey will be completed by the end of August 2023. Vizzeswarapu looks forward to using the information he gathers to propose necessary changes in bias trainings and improve curriculum.

Learn more about Saint Joseph's autism behavioral studies program and the Kinney Center for Autism Education and Support.

“People with autism make up a significant chunk of the population and, as healthcare providers, we have a responsibility to make sure that everyone gets equal care,” says Vizzeswarapu, who is also a Kinney SCHOLAR.