Barriers to healthcare: Instrument development and comparison between autistic adults and adults with and without other disabilities

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Raymaker, D. M., McDonald, K., Ashkenazy, E., Gerrity, M., Baggs, A. E., Kripke, C., Hourston, S., & 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

Publication date: 22 Sep 2016 Added to AutiHub: 4 Jul 2026 Type: Article Article language: English
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Authors

Publication authors
8
Publication authors identified as autistic
2 / 8 (25.0%)
  1. Dora M Raymaker *
  2. Katherine McDonald
  3. Elesia Ashkenazy *
  4. Martha Gerrity
  1. Amelia E.V. Baggs
  2. Clarissa Kripke
  3. Sarah Hourston
  4. Christina Nicolaidis

Abstract

Our objective was to use a community-based participatory research approach to identify and compare barriers to healthcare experienced by autistic adults and adults with and without other disabilities. To do so, we developed a Long- and Short-Form instrument to assess barriers in clinical and research settings. Using the Barriers to Healthcare Checklist-Long Form, we surveyed 437 participants (209 autistic, 55 non-autistic with disabilities, and 173 non-autistic without disabilities). Autistic participants selected different and greater barriers to healthcare, particularly in areas related to emotional regulation, patient-provider communication, sensory sensitivity, and healthcare navigation. Top barriers were fear or anxiety (35% (n = 74)), not being able to process information fast enough to participate in real-time discussions about healthcare (32% (n = 67)), concern about cost (30% (n = 62)), facilities causing sensory issues 30% ((n = 62)), and difficulty communicating with providers (29% (n = 61)). The Long Form instrument exhibited good content and construct validity. The items combined to create the Short Form had predominantly high levels of correlation (range 0.2-0.8, p < 0.001) and showed responsiveness to change. We recommend healthcare providers, clinics, and others working in healthcare settings to be aware of these barriers, and urge more intervention research to explore means for removing them.

Bibliography cited by this reference

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Bibliography inclusion overview

These indicators describe the cited bibliography imported for this publication. Cited-reference metrics use the cited-reference total as denominator. Cited-author metrics state whether they use all cited-author occurrences or only occurrences linked to authors already integrated in the AutiHub database. They use cached links between cited authors and authors integrated in the AutiHub database. Last computed: 16 Aug 2026 11:30.

Cited references
30
Total cited references integrated for this publication.
Cited references with an identified autistic author
6 / 30 (20.0%)
Cited author occurrences identified as autistic
16 / 117 (13.7%)
Among occurrences linked to AutiHub author records: 16 / 52 (30.8%). Distinct cited authors identified as autistic: 5 / 89 (5.6%).
Cited author occurrences linked to AutiHub author records
52 / 117 (44.4%)
Distinct linked cited authors: 27 / 89 (30.3%)
Linked cited-author occurrences not identified as autistic
36 / 52 (69.2%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 36 / 117 (30.8%). Distinct linked cited authors not identified as autistic: 22 / 27 (81.5%).
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