When Wendy J. Ross, MD, was invited to serve as an autism specialist on a new medical drama, she jumped at the chance. And as soon as she spotted Emmy-winning actor Noah Wylie when she Zoomed into the writers’ room, she knew the project was something special.
Today, the hospital drama, “The Pitt,” features Dr. Mel King, a neurodivergent physician who connects with patients in unique and deeply human ways. As a consultant, Dr. Ross ensured the character of Dr. King was a fully realized, complex character who went beyond stereotypes of autistic savants. Instead, she emphasized the importance of showcasing the distinct strengths and personalities of both neurodivergent physicians and the patients they serve.
This approach came naturally to Dr. Ross. As a behavioral pediatrician and the director of Jefferson Health’s Center for Autism and Neurodiversity, she’s devoted her career to advancing neurodivergent-affirming care that embraces the full humanity of this often-misunderstood population.
“So many neurodivergent patients do not get medical care once they age out of pediatrics, which leads to increasing morbidity and mortality and health care costs,” Dr. Ross said. “At Jefferson Health, we're working on neurodivergent-affirming health care by creating processes and building environments to help support these often-overlooked patients.”
Jefferson Health is part of the AMA Health System Member Program, which provides enterprise solutions to equip leadership, physicians and care teams with resources to help drive the future of medicine.
Addressing ongoing needs
Dr. Ross and her team at Jefferson Health have broadened the definition of neurodiversity beyond autism to better address the needs of a wider, more nuanced patient population.
“Neurodiversity has expanded to include anyone who communicates differently or experiences the world differently,” she explained.
Addressing this gap is urgent. Data shows that when people who have autism or an intellectual disability age out of pediatric care, they often struggle to successfully transition to adult care.
Physicians, other health professionals “and health systems [historically] haven’t given the same amount of attention to adult neurodiversity,” said Dr. Ross.
For instance, pediatricians are trained to listen to families and to find ways to successfully communicate with children at all developmental levels. Further, while many health systems have integrated sensory rooms and protocols for pediatric patients, those same practices rarely extend to adult care environments.
“The adult world has really not been prepared adequately for this population,” said Dr. Ross. “Over 80% of medical students report they get no training for this population at any point.”
Training the whole system
To bridge these gaps, Dr. Ross draws on Jefferson Health’s mission and vision: To improve lives, do the right thing, be inclusive and be innovative.
“We are very mission driven, so we work within that culture to promote [neurodiversity-affirming care] with education and sensitivity,” she said.
Her team’s model includes comprehensive training for both clinical and nonclinical team members—from medical students and physicians to nurses, medical assistants and even security personnel and front desk staff. The goal is to ensure patients who are neurodiverse are seen and heard at every touchpoint throughout the system.
“Patients see a lot of different people before they see a clinician, so we try to educate people across our enterprise,” she said. “We have widespread educational initiatives to better prepare all individuals who work and learn here.”
Dr. Ross also trains physicians to avoid diagnostic overshadowing, which is when a patient’s neurodivergence is mistakenly assumed to explain a new or unrelated health concern.
“If someone who is autistic comes in because their caregiver says they are banging their head more often, harder or only on one side, many clinicians may quickly deem it a behavioral issue and call in psychiatry or adjust medications,” she explained. “But it could turn out the patient simply has an ear infection, yet no one thoroughly examined them. So, we have to be careful not to make assumptions, and we need to be really patient.”
Higher health risks
Proper training is essential because neurodivergent patients face disproportionately high health risks. For example, people who have intellectual disabilities have higher rates of cancer, obesity and infections. Meanwhile, people who have vision, balance and gait abnormalities have a higher fall risk, which often leads to unplanned hospitalizations.
“We also have to consider that these patients often experience social isolation, mental health disorders and decreased independence, which can lead to many long-term consequences,” said Dr. Ross.
The urgency of this work became particularly clear during the COVID-19 public health emergency. Dr. Ross and her team reviewed COVID-19 data of about 65 million people, from 540 medical centers across the country to determine the impact on this population. Their study, which was published in the New England Journal of Medicine-Catalyst, revealed that having an intellectual disability was the No. 1 independent risk factor for both contracting COVID-19 and dying from it.
“People who had an intellectual disability and were admitted to the hospital with COVID-19 at the time were 30% more likely to die,” reported Dr. Ross.
Despite these risks, this population was not initially prioritized for early vaccination. Armed with this data, Dr. Ross and her team joined forces with the Special Olympics to advocate for these patients at the Centers for Disease Control and Prevention (CDC).
Although it took eight months, the CDC finally recognized intellectual disability as a significant risk factor for death from COVID-19—and included this condition in the Phase 1B vaccination group, which prioritized vaccines for people with cancer, lung disease and other high-risk conditions.
Dr. Ross’ research and advocacy ultimately influenced vaccine policy for people who have intellectual disabilities in the U.S., as well as other countries around the world.
Empowering and engaging patients
Once vaccine eligibility was secured, Dr. Ross and her team turned directly to patients to understand what they needed to feel safe and comfortable getting vaccinated.
“We knew that just because it was available, that didn’t automatically make it accessible,” she said.
Partnering again with the Special Olympics, they asked patients what they needed to know and what would make them most comfortable. They then created a video to help patients understand the benefits of being vaccinated and what to expect.
They also designed a neurodivergent-friendly vaccine program with extended appointment times and sensory-friendly vaccination environments.
“Today, one of the core things we do here at Jefferson Health is ask our population first what they want and incorporate them as stakeholders,” said Dr. Ross.
Creating a friendly environment
Dr. Ross has carried this philosophy into the design of Jefferson Health’s Honickman Center.
“A lot of people with autism or neurodiversity are highly impacted by their sensory environment when they walk through the door, before anyone even talks to them,” said Dr. Ross. “That is a huge barrier to just about everything.”
That’s why Dr. Ross went to the executive team at Jefferson Health to propose her team’s involvement in designing the new space.
“I told them that that this population is never considered, and we have a real opportunity here to include them from the outset,” she said.
The leadership team was instantly receptive.
Her team promptly organized patient focus groups to shape decisions and provide feedback on neurodivergent-affirming spaces in the pavilion. For instance, patients helped test sensory-friendly furniture and their input guided features such as privacy screens, furniture textiles, biophilic textiles for the walls, rocking chairs, adult changing stations and a meditation room.
“When we were piloting chairs, we included patients who were nonspeaking. We videotaped them and coded their behaviors as they sat in the chairs to determine how comfortable they were in the seating,” explained Dr. Ross.
This allowed Dr. Ross and her team to reflect on both verbal and nonverbal feedback, ensuring they had the most accurate information possible from the patients.
Additionally, the clinical spaces were specifically designed to minimize transitions, with in-room equipment to capture vitals and an exam table that automatically registers a patient’s weight. These deliberate designs allow patients to stay in the comfort of their own dedicated space rather than being shuffled from station to station.
“No one ever really considers the built environment but it’s super important,” said Dr. Ross. “We had influence in every part of the building.”
Elevating care for everyone
For Dr. Ross, improving standards of care and creating inclusive clinical spaces for neurodiverse patients is about more than equity. It’s about elevating care for all patients and improving the field of medicine as a whole.
“This work is about the care that some people absolutely must have, but it's also about the care we all deserve,” she said. “Standing at the end of a patient’s bed and taking into account a million things that tell you what an individual needs is truly the art of medicine.”
And at the center of that art is empathy.
“In medicine right now, we need to focus on how we connect and communicate with all patients and their caregivers,” said Dr. Ross. “These are hard times in health care, but holding onto our humanity is the best way to build and maintain a culture we want to be part of.”
