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

This publication is included in the Autistic Autism Scholarship Project. three authors of this publication are identified as autistic in the project.

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Raymaker, D. M., McDonald, K., Ashkenazy, E., Gerrity, M., Baggs, M., 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

Journal or book title
Autism
Publisher
SAGE Publications
Volume
21
Issue
8
Pages
972-984
Publication date: 22 Sep 2016 Added to AutiHub: 4 Jul 2026 Type: Article Article language: English
Publisher source (DOI) OpenAlex source

This publication is integrated into AutiHub through:

Authors

Publication authors
8
Publication authors identified as autistic
3 / 8 (37.5%)
  1. Dora M. Raymaker *
  2. Katherine McDonald
  3. Elesia Ashkenazy *
  4. Martha Gerrity
  1. Mel 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

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 13:57.

Cited references
30
With a DOI
26
Without a DOI, from raw bibliography text
3
6 / 30 (20.0%) cited references include at least one author identified as autistic.
References with data to complete
0 / 30 (0.0%)
References with detected author names
30 / 30 (100.0%)
Without detected author names
0
Without a structured title
0
Without a stable identifier
3
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
117
From DOI or external metadata
117
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
0
52 / 117 (44.4%) names are linked to an author already present in AutiHub. 65 / 117 (55.6%) names are not yet linked.
Names linked to a person identified as autistic
23 / 117 (19.7%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 23 / 52 (44.2%). Distinct people identified as autistic: 7 / 88 (8.0%).
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