Neurodiversity in Medical Settings

Authors: Kai Yuan and Arieh Lisitza

Editors: Dmitri Schmidt, Izzy Ginnett, and Kat Downey

Neurodivergence affects all aspects of a person’s life and how they move through the world, including their interactions with the medical system. This includes general medical care that someone may need, as well as the diagnostic and management process. Ironically, issues with executive function, anxiety and sensory processing can often make it more difficult for neurodivergent adults to manage their own care. This results in a vicious cycle, in which the people who most need care are often the least able to access it.

Autistic adults, in particular, are more likely to be uninsured, and are less likely to have their health needs met across a wide variety of domains, including physical, mental, and reproductive health. They more often report not being involved in healthcare choices and not being given adequate information about their health. Autistic adults also show disparities in their health behaviors, including frequent difficulty taking medications as prescribed and lower rates of exercise (Nicolaidis et al., 2012). These factors add up and lead to worse health outcomes down the line.

Why do these discrepancies exist? One factor impacting neurodivergent people’s ability to access healthcare is a difficulty in communicating with healthcare providers. Many neurodivergent people report experiences with healthcare providers being condescending or assuming that they are less intelligent than they are, particularly when they use non-verbal forms of communication (Nicolaidis et al., 2015). In addition, differences in perceptions of bodily sensations can create a gap in understanding of what symptoms neurodivergent people are struggling with, which makes diagnosis and treatment harder.

More broadly, healthcare settings are often set up in ways that are difficult for neurodivergent people to navigate. This includes difficulties navigating the logistical realities of healthcare, such as appointment times and phone calls, as well as sensory difficulties within healthcare settings. Factors that may seem trivial to abled people can be major barriers to care for neurodivergent people. For example, the bright lights in a waiting room or needing to make a phone call to set up an appointment can deter neurodivergent adults from seeking care. All of these issues can make neurodivergent people hesitant to access healthcare and decrease trust in the medical community. Therefore, it is important to have a strong framework for understanding the intersections of disability and healthcare, particularly influences on healthcare disparities.

As shown in the diagram above, Meade (2014) synthesized a conceptual framework for understanding disability and healthcare disparities, which discusses both how social determinants of health, such as environment, race, education, and access to healthcare affect health status, as well as how disability itself impacts health status.

The onset of the COVID-19 pandemic also exacerbated existing disparities in income, healthcare access, and education. Disabled people who needed regular access to medical facilities often found that services were either closed entirely or operating at insufficient capacity due to hospital beds being diverted to pandemic efforts. They also frequently lost access to transportation needed to attend in-person appointments, which in many cases led to deterioration of chronic conditions. Deaf and developmentally disabled children also often were unable to seek diagnoses during the pandemic, delayed access to services and accommodations. Individuals in assisted living facilities often were subject to strict restrictions on visitors, meaning they no longer had friends and family members who could advocate for them with medical personnel. Those who had home-based care services often lost access to care entirely as caregivers became sick or needed to quarantine (Jesus et al., 2021).

Systemic racism has also led to disparities in the diagnosis process. Historically, rates of diagnosis were significantly lower for Black and Hispanic autistic people. Recent health equity efforts have resulted in similar diagnosis rates for Black and White children, but the same improvements have not been seen in Hispanic children. Additionally, because receiving a diagnosis is significantly more difficult for adults, there is likely a large backlog of autistic Black and Hispanic adults who are still undiagnosed (Yuan et al., 2021). The end result is a system in which multiply-marginalized autistic adults are also the least likely to have access to services and accommodations.

It is important for both neurodivergent people and medical providers to take systemic factors into account when working with each other. Providers need to be aware of how neurodivergence can impact a patient’s ability to access medical care and follow through on instructions. Neurodivergent patients need to be coached in self-advocacy within medical settings. In addition, although some resources exist to help disabled adults navigate the healthcare system (such as the AASPIRE healthcare toolkit), there is still a need for more education for both providers and neurodivergent patients.

References

Jesus, T. S., Bhattacharjya, S., Papadimitriou, C., Bogdanova, Y., Bentley, J., Arango-Lasprilla, J. C., Kamalakannan, S., & The Refugee Empowerment Task Force, I. N. G. of the A. C. of R. M. (2021). Lockdown-Related Disparities Experienced by People with Disabilities during the First Wave of the COVID-19 Pandemic: Scoping Review with Thematic Analysis. International Journal of Environmental Research and Public Health, 18(12), 6178. https://doi.org/10.3390/ijerph18126178

Meade, M. A., Mahmoudi, E., & Lee, S.-Y. (2015). The intersection of disability and healthcare disparities: A conceptual framework. Disability and Rehabilitation, 37(7), 632–641. https://doi.org/10.3109/09638288.2014.938176

Nicolaidis, C., Raymaker, D. M., McDonald, K. E., Baggs, W. A. E. V., Dern, S., Kapp, S. K., Weiner, M., Boisclair, C., & Ashkenazy, E. (2015). “Respect the way I need to communicate with you”: Healthcare experiences of adults on the autism spectrum. Autism : The International Journal of Research and Practice, 19(7), 824–831. https://doi.org/10.1177/1362361315576221

Nicolaidis, C., Raymaker, D., McDonald, K., Dern, S., Boisclair, W. C., Ashkenazy, E., & Baggs, A. (2013). Comparison of healthcare experiences in autistic and non-autistic adults: A cross-sectional online survey facilitated by an academic-community partnership. Journal of General Internal Medicine, 28(6), 761–769. https://doi.org/10.1007/s11606-012-2262-7

Yuan, J., Li, M., & Lu, Z. K. (2021). Racial/Ethnic Disparities in the Prevalence and Trends of Autism Spectrum Disorder in US Children and Adolescents. JAMA Network Open, 4(3), e210771.https://doi.org/10.1001/jamanetworkopen.2021.0771