Date Presented 04/04/2025
Primary care encounters are reported to be challenging for autistic adults. This presentation will identify challenges experienced by this population, as reported by autistic adults, as well as strategies to mitigate these difficulties.
Primary Author and Speaker: Leah I. Stein Duker
Additional Authors and Speakers: Willa Giffin, Lily Shkhyan
BACKGROUND: Primary care, designed to manage health concerns, contribute to preventive care, and provide medical care coordination, may be especially vital for autistic individuals who disproportionately experience psychiatric and physical health conditions. However, autistic adults often face barriers to receiving primary care, and first-hand accountings of these challenges are limited.
PURPOSE: To describe barriers and facilitators to primary care encounters as reported by autistic adults.
METHODS: Interviews were conducted with 34 autistic adults in Los Angeles and Philadelphia, lasted an average of 26 minutes, were transcribed verbatim, and analyzed using thematic analysis. This dataset is part of a larger study that interviewed autistic adults, caregivers, and primary care providers.
RESULTS: Participants were primarily White (71%) and non-Hispanic (82%), with a mean age of 32 years. Five overarching themes emerged from the interviews, including: (1) Access, describing challenges with continuity of care and finding a provider; (2) Support, examining the impact of a support person on healthcare visits and decision-making dynamics; (3) Environment, exploring the physical, sensory, and social aspects of healthcare encounters; (4) Communication, illustrating both the positive and negative communication styles of providers; and (5) Knowledge, emphasizing the lack of provider autism-specific knowledge and its impact on care.
CONCLUSION/IMPACT: Findings provide a nuanced understanding of the primary care experiences of autistic adults, highlighting barriers and facilitators to these encounters. This offers valuable insights to developing interventions to improve the accessibility and quality of care for autistic individuals, filling a crucial gap in the literature. OTs should be involved in collaborating to develop autism-specific medical education curricula and the development/testing of interventions to improve primary care for autistic adults.
References
Stein Duker, L.I., Goodman, E., Pomponio Davidson, A., & Mosqueda, L. (2022). Caregiver perspectives on barriers and facilitators to primary care for autistic adults: A qualitative study. Frontiers in Medicine: Family Medicine and Primary Care, 9, 102202. https://doi.org/10.3389/fmed.2022.1022026
Stein Duker, L. I., Kim, H.S., Pomponio, A., Mosqueda, L., & Pfeiffer, B. (2019). Examining primary care health encounters for adults with autism spectrum disorder. American Journal of Occupational Therapy, 73, 1–11. https://doi.org/10.5014/ajot.2019.037226
Raymaker, D. M., Mcdonald, K. E., Ashkenazy, E., Gerrity, M., Baggs, A. M., Kripke, C., . . . Nicolaidis, C. (2016). Barriers to healthcare: Instrument development and comparison between autistic adults and adults with and without other disabilities. Autism, 21(8), 972–984. https://doi.org/10.1177/1362361316661261
Nicolaidis, C., Raymaker, D., Mcdonald, K., Dern, S., Boisclair, W. C., Ashkenazy, E., & Baggs, A. (2012). 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, 761–769. https://doi.org/10.1007/s11606-012-2262-7
