Newswise — “What can we do to make this visit easier for you?”
This simple question would have made a world of difference for this routine pediatrician’s visit, had it been asked. , a gynecologic surgeon at the UNC School of Medicine, had brought her then 4-year autistic old son in for a routine pediatric visit, but her son was having a tough time adjusting to the medical environment.
Schiff’s son was in an unfamiliar place, asked to speak to unfamiliar people, and do new and uncomfortable tasks: stand on a cold scale, have a tight blood pressure cuff squeeze his arm, climb onto an exam table nearly double his height.
To a neurotypical person, these would have been simple requests. But for Dr. Schiff’s son, these were a series of unpredictable and overwhelming tasks; he shut down, seeking safety in the corner of the room. This is just one of many examples of how medical encounters are not designed with neurodivergent people in mind. But what if doctors were more flexible, more accommodating?
Schiff specializes in fibroids, endometriosis, pelvic pain, and complex benign gynecologic surgery. Because of the sensitive nature of gynecologic care, Schiff is always concerned with ensuring her patients’ comfort. However, Schiff realizes that she needs to be doing more for her patients with autism.
A Call to Action
According to estimates from CDC's , 1 in 36 people are autistic. To Schiff, this is a large patient population, particularly one that is not receiving skilled medical care.
“I think, as providers, it's easy to get pretty rigid in some of our own routines, and not even realize it,” said Schiff, who is also the associate chief medical officer for quality & patient safety at UNC Hospitals.
“Through my experiences with my son, it has become very apparent to me that we are set up in ways that make it very challenging for autistic patients to feel comfortable and to be able to engage in their care in meaningful ways.”
In 2023, Schiff did a deep dive into medical programs and professional organizations, both big and small, across the United States to see if there are official medical guidelines on how to properly provide medical care for patients with autism. Schiff found none. She took things into her own hands, giving didactic sessions to residents in her own Department and speaking regionally at Grand Rounds.
But she needed to address this issue on a broader scale. Schiff connected with , a clinical assistant professor of psychiatry at the UNC School of Medicine and staff psychologist at , and Teal Benevides, PhD, an occupational therapist and autism researcher at Augusta University, to write a perspective piece addressing this lack of medical training and guidelines.
Their piece titled, “” was published in the New England Journal of Medicine in December 2024, garnering worldwide attention from medical professionals across medical specialties and parents of autistic children.
A Simple Question
Schiff and Hester say that simply asking a patient what could make their visit easier can open a whole new dialogue between patient and doctor. Because autism exists on a spectrum, there is no one right way to accommodate a patient’s needs. For this reason, understanding a patient’s individual needs and being flexible is key.
“[Autistic people’s] brains process information and sensory input differently,” explains Hester. “For example, it's not just that someone dislikes how part of an examination feels or prefers not to make eye contact. Undergoing a physical exam or making eye contact with their provider might be physically painful or emotionally overwhelming. That's not necessarily something that someone can control, but we, as providers, can attempt to decrease that discomfort.”
Perhaps they need a printed-out agenda of the visit to decrease their fear of the unknown, or verbal cues before physical touch to reduce pain or discomfort. Either way, Schiff says that quick interventions, prompted by asking one simple question, can vastly improve patient comfort and trust, and keeps them coming back for important medical care.
“Many autistic people do not go get their preventative care because of the difficulties accessing healthcare,” said Schiff. “In fact, autistic people have higher numbers of comorbidities, and so they should be interacting with the medical system more than the average person. And yet, they're interacting with it less because the environment doesn’t accommodate for their needs.”
Autism-friendly accommodations and strategies benefit a wide array of patients. Many people with other neurodivergences [e.g., Attention –Deficit/Hyperactivity Disorder (ADHD), posttraumatic stress disorder (PTSD)], anxiety disorders, trauma histories, and those from marginalized populations, have similar challenges in medical settings.
People in general may be more likely to engage in their healthcare if visits are tailored to their needs, and communication and learning styles. Ultimately, Schiff, Hester, and Benevides argue in their article that meeting each individual patient where they are and addressing their unique needs is just good patient care. Thoughtful care and accommodations can improve healthcare for all, not just those with autism.
What’s Next for Schiff and Hester
To accomplish widespread integration of accommodation strategies in medical care, Schiff and Hester emphasize that physicians and educators need to go back to the drawing board, starting with medical education.
“If we start now setting standards and expectations for medical school and residency, then we will have a medical community in the future who has a much better understanding of autism and how to provide accommodations to autistic people, so they can actually get the care they deserve,” said Schiff.
Schiff urges medical schools and residency programs to start providing comprehensive education on providing care for neurodivergent people, to guarantee that everyone, regardless of medical specialty, can provide medical care to these populations.
Hester hopes to leverage her resources at UNC TEACCH to provide further resources and support to this new educational initiative. UNC’s TEACCH is the preeminent center for autism research and clinical work in the world. The Center operates seven outpatient clinics across North Carolina and offers comprehensive trainings to professionals around the world.
However, the increased demand for autism-related services in recent years has significantly outpaced TEACCH’s ability to grow, complicating their vision of applying more knowledge and awareness to other programs, medical professionals, and hospital systems.
In the meantime, Schiff and Hester are working together once again, this time on a grant proposal to develop guidelines on how to make clinics more neurodivergent-friendly. Their goal is to publish a reproducible pathway for health care environments to easily incorporate accommodations into their busy workflows.
The two are hoping to provide education about this important topic to larger audiences, furthering their mission of raising awareness among medical professionals and helping autistic people feel heard and supported.
“This is something that is so important to get out to the medical community, but also to the lay community,” said Schiff. “As a parent of an autistic child, it would be like a dream come true, if, at least, I could go into a medical environment and the nurses, physicians, or other professionals could provide my son with the medical care he deserves."
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