By Charlene N. Rivera-Bonet | Waisman Science Writer
Lauren Bishop’s lab uses identity-first language in alignment with the preferences many of those in the autistic community. This story reflects that preference.
Recent estimates of autism spectrum disorder (ASD) in adults suggest there are about 5.5 million autistic adults in the United States, a number that is rapidly increasing in a world that isn’t fully set up to meet their needs, leading to disparities in health outcomes. System-level changes are needed to make healthcare inclusive for autistic adults and improve their health outcomes, a new study shows.
Autistic adults experience higher rates of mental and physical health conditions, but the reasons why aren’t entirely clear. Barriers to accessing inclusive healthcare may contribute to these disparities, suggests new research from the lab of Lauren Bishop, PhD, associate professor in the Sandra Rosenbaum School of Social Work. The study also identified facilitators, or things that helped make healthcare more inclusive and accessible for autistic adults.
“We decided to do a qualitative study to better understand what’s going on behind the scenes directly from autistic people, rather than just from data that represents autistic people,” Bishop says. The researchers interviewed a diverse group of autistic adults on barriers and facilitators that impacted whether they got the healthcare they needed. They recruited autistic people who need a range of support, have different gender identities, and different racial and ethnic backgrounds. “We wanted to truly understand experiences across the autism spectrum,” Bishop says.
In collaboration with autistic adults, they came up with open-ended questions that aimed to understand what health meant for them and gather their experiences with seeking healthcare. “We came up with the idea for the study, the questions, the consent form, everything in partnership with autistic adults,” says Kiley McLean, PhD, MSW/MSEd, former graduate student in Bishop’s lab, current postdoctoral fellow at The A.J. Drexel Autism Institute, and lead author of the study. Meghan Haas, APSW, MSW, Jamie Koenig, AM, Megan Horvath, Mariah Vigil, and Nicole Werner, PhD, also collaborated in the study.
Barriers and facilitators of care
The study identified five different categories of barriers and facilitators of inclusive healthcare: person, organization, technologies and tools, tasks, and environment.
Within person, or to the individual receiving care, autistic adults expressed that their sensory differences and executive functioning skills such as planning, impulse control, and working memory, often impacted their ability to communicate and advocate their healthcare needs. On the other end, they expressed that their healthcare providers had limited training on the unique ways autism presents in adults. “I think that a lot of adult healthcare providers assume that autism is something that happens to kids, and they don’t necessarily consider that autistic people grow up and need health care as adults throughout the entire life course,” Bishop says.
In terms of facilitators, many noted that a social support such as parents, siblings or care professionals were helpful in the receipt of quality care.
When considering the culture and structure of the healthcare organization, a common barrier was the short length of the doctor’s appointments, which didn’t provide enough time to address all of their needs. The socially demanding environment of clinical spaces also presents a barrier, requiring autistic adults to behave a certain way to receive the care they need.
Autistic adults expressed that tools and technologies that allow them to schedule an appointment online and message medical questions to their doctors facilitate their access to healthcare.
Tasks such as visiting a doctor for routine check-ups, accessing preventative care, taking medications and completing medical paperwork were often seen as daunting because of their physical and physiological demand. Autistic adults worry they aren’t sick enough to justify a check-up, that they will be discounted because of their gender or diagnosis, or that their communication style will be misunderstood. For example, they fear that their sensitivity to making eye contact will be seen as negative and impact the quality of care they receive. Many of them feel that going to the doctor is a social interaction they need to rehearse for. “Just going in for routine care is often really socially taxing for autistic people, and leads to a lot of distress,” Bishop says.
The clinical space itself is also a challenge, especially for autistic adults with a hypersensitivity to bright lights, certain smells, textures, and loud or unpredictable sounds. Sensory sensitivity is often a core character of autism, and can be exacerbated by nerves or anxiety, which the visit or appointment itself already heightens. Additionally, getting to the clinics posed a bigger challenge for those who didn’t drive.
An interconnected system
The researchers used an established model called the Systems Engineering Initiative for Patient Safety (SEIPS) to help illustrate how each factor of the healthcare system – person, organization, technologies and tools, environment, and tasks – interacts with one another to impact processes and outcomes. The model revealed a multifaceted healthcare system, with all of the factors relating to each other, meaning that in order to achieve inclusive healthcare for autistic adults, a system-level change needs to occur. “My goal is to show that everything is connected, and that in order to bring about change, we need to look at it at a systems level and target interventions within all these different structures, not just one of them,” McLean says. “Because if one structure is failing, it’s going to impact all the other ones.”
Recommendations for inclusive care
With these barriers and facilitators as the foundation, McLean, Bishop and colleagues developed a list of recommendations to make healthcare more inclusive and welcoming for autistic adults. “I would love to live in a world where all healthcare environments were sensory-friendly and where all healthcare environments try to reduce the cognitive and executive functioning demands on patients,” Bishop says.
Interventions, McLean and Bishop say, may look like longer appointment times, training for doctors and healthcare providers in how to support autistic adults, ensuring online options for appointment management and communication, creating tools for autistic adults to communicate their needs in non-normative ways, providing sensory rooms with minimal light and noises, and accessible transportation.
“There were many people who told us really positive experiences that they had with their health care providers who just went above and beyond to provide them with inclusive care. But that didn’t take away from the physical accessibility of their office, or the fact that their health insurance wouldn’t cover all of the supports that they need,” McLean says. For healthcare to be truly inclusive and accessible, all barriers in the system need to be addressed.
“Making systems neurodiversity-affirming and neurodiversity-friendly helps everybody. It doesn’t just help neurodiverse people,” Bishop says. “And if we were to change our system so that all systems are neurodiversity-affirming and adapted specifically for people who are neurodiverse, and universally designed in that way, it would improve health care overall. Not just for autistic people, but for all of us.”
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