A recent study by researchers at the University of Wisconsin examined the challenges faced by autistic adults in healthcare and proposed a model to improve healthcare access for this group. The study offers insights into the disparities faced by autistic patients and calls for systemic changes that can improve healthcare outcomes for underserved populations, particularly autistic individuals.

Senior author and UW associate professor Lauren Bishop said that a central limitation of many healthcare studies is their reliance on large administrative data sets, such as electronic health records and insurance claims, which primarily focus on population-level trends. While these data sets are invaluable for spotting broad patterns, they fail to capture the nuanced, lived experiences of individuals navigating healthcare systems, Bishop said.

“We wanted to know, why are we seeing such high rates of health problems and disparities among autistic individuals?” Bishop said. “That’s where qualitative research comes in — talking directly to people about their experiences with healthcare.”

Through interviews with autistic adults, the study identified specific challenges autistic individuals face when engaging with the healthcare system, highlighting the limitations of a system built primarily for neurotypical patients.

Autistic people often experience challenges that neurotypical individuals do not, particularly in how they process sensory information and engage in social communication, Bishop said.

“Our healthcare systems are typically designed by neurotypical people, for neurotypical people,” Bishop said. “They aren’t built for people who are neurodivergent [and] experience differences in how they process sensory information and social communication …when they enter a system that’s not designed for them, it creates barriers at multiple levels.”

These barriers are visible at every stage of the healthcare process. Bishop said scheduling a doctor’s appointment — a seemingly simple task — can become overwhelming for autistic individuals. It’s not just about calling the clinic and booking a slot — it involves a series of social interactions, like negotiating dates, figuring out transportation and navigating a waiting room, all of which are complex social interactions that many autistic people find difficult to manage, Bishop said.

The COVID-19 pandemic introduced significant changes to how healthcare services are delivered, some of which have proven beneficial for autistic patients. The shift to telehealth and the ability to schedule appointments online helped mitigate some of the common barriers autistic individuals face when accessing care.

“During the early years of the pandemic, we saw some positive changes for autistic people, like the ability to make appointments online and have telehealth visits,” Bishop said. “These changes made healthcare more accessible, reducing barriers like transportation and the need for social communication that often come with in-person visits.”

But, while these changes offered some relief, they were not a complete solution. The overall healthcare system still struggles to accommodate the unique needs of autistic adults, particularly in addressing the long-term health disparities they face.

The lead author of the study, Kiley McLean, emphasized the healthcare disparities faced by autistic adults, particularly in terms of preventable chronic conditions. She pointed out that many of these conditions are more prevalent in autistic populations than in the general public.

“In other studies, we were finding really high rates of preventable chronic diseases like cardiovascular disease, diabetes, asthma, sleep disorders, and digestive problems in the autistic population,”  McLean said. “These are conditions that are preventable in the non-disabled population, yet we continue to see them at much higher rates in autistic adults.”

McLean noted a concerning trend in healthcare utilization among autistic adults. Despite seeking medical care more frequently than the general population, their health outcomes do not improve in proportion to their higher healthcare usage.

Instead, autistic adults are often brushed aside in healthcare scenarios, McLean said.

“We were seeing high rates of healthcare utilization in autistic adults, but the health outcomes just didn’t match up,” McLean said. “It made us ask: What are the barriers to accessing inclusive care?”

Bishop and McLean both stressed the importance of directly hearing from autistic individuals about their healthcare experiences.

The study’s methodology was also designed to ensure inclusivity, with researchers interviewing a diverse group of participants. They specifically sought out individuals who were self-diagnosed, as well as BIPOC and transgender/non-binary autistic adults, whose voices are often overlooked in research, according to McLean.

Many autistic adults find sensory challenges as one of the biggest barriers when seeking medical care, particularly in environments like hospitals or clinics, McLean said, this can make a visit to the doctor overwhelming and even painful.

This sensory overload is often enough to deter individuals from seeking medical care, according to McLean. For some, the physical space of a healthcare setting becomes a barrier in and of itself, McLean said.

“For many, the question wasn’t just ‘Is this bad enough to go to the doctor?’ but ‘Is this bad enough to put me in an environment that is sensory painful for me?’” McLean said.

While healthcare providers often lack training on how autism presents in adults, Bishop and McLean agree that training alone isn’t enough to address the systemic issues at play. There are other significant barriers, such as the need for longer appointment times, the lack of support staff, and inadequate insurance coverage for necessary care.

“Provider training is a major barrier,” Bishop said. “Social work programs tend to offer more training in autism and developmental disabilities, but they don’t always focus enough on working with autistic individuals. There’s a clear need for better training across the board.”

Many autistic individuals feel exhausted due to the burden of “masking” their traits in order to receive care, McLean said. Masking — acting in ways that are perceived as more socially acceptable — is emotionally and physically draining, and it often leads to misunderstandings in the medical environment, she said.

Bishop further emphasized the need for systemic change, including addressing issues such as transportation, insurance and the inaccessibility of healthcare spaces. According to both researchers, a multifaceted approach is necessary to improve care for autistic adults.

“The biggest takeaway from this study is that healthcare for autistic adults needs a systems-level change,” McLean said. “It’s not just about training doctors — there are so many other barriers, like inaccessible environments, transportation issues, and insurance challenges.”

Bishop hopes practical, immediate changes could be implemented to help autistic adults today. These small adjustments — such as creating sensory-friendly rooms in hospitals and providing social workers to help patients navigate the system — could make healthcare more accessible right now, Bishop said.

Bishop and McLean agreed that inclusivity in autism research and healthcare is critical to addressing disparities. There are steps that need to be taken to make people with autism feel more comfortable in healthcare environments, they said.

“Autistic adults are part of every community, and it’s critical that autism research includes people from all backgrounds and experiences,” McLean said. “If we’re going to address these health disparities, we need to listen to the full diversity of autistic voices.”