Barriers and facilitators to primary healthcare encounters as reported by autistic adults: a qualitative study

This publication is included in the Autistic Autism Scholarship Project. one author of this publication is identified as autistic in the project.

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Stein Duker, L. I., Giffin, W., Taylor, E., Shkhyan, L., Pomponio Davidson, A., & Mosqueda, L. (2025). Barriers and facilitators to primary healthcare encounters as reported by autistic adults: a qualitative study. Frontiers in Medicine, 12, 1481953-1481953. https://doi.org/10.3389/fmed.2025.1481953

Publication date: 12 Mar 2025 Added to AutiHub: 30 Sep 2026 Type: Article Article language: English
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Authors

Publication authors
6
Publication authors identified as autistic
1 / 6 (16.7%)
  1. Leah I. Stein Duker
  2. Willa Giffin
  3. Elinor Taylor *
  1. Lily Shkhyan
  2. Amber Pomponio Davidson
  3. Laura Mosqueda

Abstract

Background Primary care is designed to co-manage health concerns, contribute to preventive care, and provide medical care coordination. Receiving primary care may be especially vital for autistic people, many of whom disproportionately experience psychiatric and physical health conditions. However, autistic adults often face barriers to receiving primary care, and first-hand accounts of these challenges are limited. Therefore, the purpose of this study was 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 min, 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 (PCPs). Results Participants were primarily White, non-Hispanic, and had a mean age of 32 years. Five overarching themes describing challenges and potential strategies to improve care emerged from the interviews: (1) finding a primary care provider, (2) the physical environment, (3) communication, (4) autism-specific knowledge, and (5) support for primary care encounters, while simultaneously highlighting the importance of tailoring care for autistic adults to improve primary care experiences. Results, specifically in the communication and autism-specific knowledge themes, were consistent with the neurodiversity model of autism, as participants highlighted stigma and mutual communication as key healthcare barriers. Conclusion Findings provide a nuanced understanding of autistic adult participants’ primary care experiences, highlighting their perception of barriers and facilitators to these healthcare encounters. These results offer valuable insights for improving the accessibility and quality of care for autistic people, many of which are practical, low/no cost, and easy to implement. Strategies also emphasized the diversity of experiences and preferences for autistic patients, highlighting the importance of tailoring accommodations in the primary care setting.

Bibliography cited by this reference

Cited references are imported from external metadata sources when they are available. The list may be partial.

Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 2 Oct 2026 02:39.

Cited references
63
With a DOI
59
Without a DOI, from raw bibliography text
4
19 / 63 (30.2%) cited references include at least one author identified as autistic.
References with data to complete
3 / 63 (4.8%)
References with detected author names
61 / 63 (96.8%)
Without detected author names
2
Without a structured title
2
Without a stable identifier
4
References with raw author names still to review
0
References with external metadata lookup issues
0
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
361
From DOI or external metadata
361
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
0
212 / 361 (58.7%) names are linked to an author already present in AutiHub. 149 / 361 (41.3%) names are not yet linked.
Names linked to a person identified as autistic
46 / 361 (12.7%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 46 / 212 (21.7%). Distinct people identified as autistic: 29 / 301 (9.6%).
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