“Respect the way I need to communicate with you”: Healthcare experiences of adults on the autism spectrum

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

Publication date: 16 Apr 2015 Added to AutiHub: 4 Jul 2026 Type: Article Article language: English
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Authors

Publication authors
9
Publication authors identified as autistic
4 / 9 (44.4%)
  1. Christina Nicolaidis
  2. Dora M Raymaker *
  3. Elesia Ashkenazy *
  4. Katherine McDonald
  5. Sebastian Dern
  1. Amelia E.V. Baggs
  2. Steven K. Kapp *
  3. Michael Weiner
  4. W. Cody Boisclair *

Abstract

Our objective was to obtain an in-depth understanding of autistic adults' experiences with healthcare and their recommendations for improving care. Our academic-community partnership used a community-based participatory research approach to conduct semi-structured, open-ended interviews with 39 autistic adults and 16 people who had experience supporting autistic adults in healthcare settings. Participants identified patient-level, autism-related factors that impact healthcare interactions, including verbal communication skills, sensory sensitivities, challenges with body awareness, slow processing speed, atypical non-verbal communication, and challenges with organization. However, the success of healthcare interactions largely depended on the interplay between patient- and provider-level factors, as well as the larger context in which patients were receiving care. Provider-level factors included providers' knowledge about autism in adults, incorrect assumptions about individual patients, willingness to allow written communication, use of accessible language, openness to providing other accommodations, and skill in appropriately incorporating supporters. System-level factors included the availability of supporters, complexity of the healthcare system, accessibility of healthcare facilities, and stigma about autism. Further efforts are needed to empower patients, adequately train providers, increase the accessibility of the healthcare system, and decrease discrimination.

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
24
Total cited references integrated for this publication.
Cited references with an identified autistic author
2 / 24 (8.3%)
Cited author occurrences identified as autistic
7 / 93 (7.5%)
Among occurrences linked to AutiHub author records: 7 / 26 (26.9%). Distinct cited authors identified as autistic: 4 / 83 (4.8%).
Cited author occurrences linked to AutiHub author records
26 / 93 (28.0%)
Distinct linked cited authors: 17 / 83 (20.5%)
Linked cited-author occurrences not identified as autistic
19 / 26 (73.1%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 19 / 93 (20.4%). Distinct linked cited authors not identified as autistic: 13 / 17 (76.5%).
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