
Adults with Autism Don’t Get Adequate Healthcare. Training Providers Can Help.
UVA researcher Micah Mazurek worked with healthcare providers who shared their desire to learn more about how to support their autistic patients.
Though autism is often diagnosed when children are young, it persists across the lifespan. Many individuals with autism often struggle to receive adequate medical care as they age out of pediatric care.
Autistic adults have very high rates of medical and mental health conditions, according to Micah Mazurek, Novartis U.S. Foundation Professor of Education at the UVA School of Education and Human Development and director of the Supporting Transformative Autism Research initiative. They are also at significantly higher risk for both suicide and premature mortality.

“They desperately need high-quality healthcare to be able to manage these complex co-occurring medical and mental health conditions,” Mazurek said. “And the sad reality is that they don't have access to healthcare services that adequately meet their needs.”
With funding from the U.S. Department of Defense, Mazurek and her colleague Dr. Beth Malow, a physician and professor at Vanderbilt University Medical Center, developed a program specifically focused on training primary care physicians and nurse practitioners to provide best practice primary health care for autistic adults.
Either by way of training or experience, pediatricians are more accustomed to working with autistic patients. As more and more children are diagnosed, pediatricians often end up with many children with autism in their practices. Adult health care providers, however, do not typically receive any training in autism unless they specialize in developmental disabilities. As a result, adult healthcare providers often don’t feel equipped to provide care for autistic patients and may even turn them away.
The good news is that physicians want to change that.
“Clinicians are very interested in learning more about autism and having more tools to be able to provide better care for their patients,” Mazurek said. “In our conversations with healthcare providers, they reported a strong desire for training in evidence-based guidelines for treatment and support of autistic patients.”
When Mazurek and colleagues received funding to develop an autism training for healthcare providers, they began by interviewing autistic adults, parents, primary care physicians, and nurse practitioners to learn more about their healthcare experiences, barriers and suggestions for improvement.
The interviews revealed many barriers to care. In some cases, potential patients were turned away because the healthcare provider simply did not accept individuals with autism. Even when autistic adults received services, many individuals and families felt that their providers didn’t have the knowledge about autism to be able to appropriately meet their needs.
“Autistic adults often have differences in communication, information processing, and sensory experiences that make the healthcare setting challenging for them,” Mazurek said. “They also have a huge range of medical needs. Because of this, clinicians need to know how to provide appropriate accommodations for their autistic patients in order to deliver effective and comprehensive care.”
Sometimes the barrier is the clinical setting itself. Navigating the noisy waiting room, completing the intake process, and dealing with uncomfortable medical procedures can be especially difficult for autistic patients. This can be challenging for both patients and their healthcare providers.
The training program Mazurek and Malow developed leveraged the ECHO Autism model to virtually connect a team of autism experts with healthcare providers from around the country to offer training and mentorship in best practice care for autism. This included caring for co-occurring conditions—like sleep difficulties or psychiatric concerns— as well as helping people find support in their communities. The training also included information on how to set up clinic visits to be helpful and accommodating to the needs of autistic adults.
“We addressed strategies to help autistic patients feel more comfortable— things like allowing extra time for their clinic visit, letting them wait in a quiet area instead of in a busy waiting room, and letting them know what to expect before the visit,” Mazurek said. “It is also important for providers to know how to support different communication needs. Some people don't speak with words verbally, but they might have a communication device or other ways to communicate. Other patients may just need more time to process information or may prefer written information.”
The training saw positive results. Healthcare providers who participated in the training reported improved self-efficacy and knowledge gains.
For Mazurek, this is a positive start. But there is a long way to go.
“It is important that we continue to work on equipping our healthcare systems to better meet the needs of autistic adults,” Mazurek said. “The ECHO Autism model may be a helpful way to support primary care physicians and nurse practitioners in providing best practice care for these patients.”
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Audrey Breen