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

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

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Nicolaidis, C., Raymaker, D. M., Ashkenazy, E., McDonald, K., Dern, S., Baggs, M., 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
Publisher source (DOI) Full text OpenAlex source

This publication is integrated into AutiHub through:

Authors

Publication authors
9
Publication authors identified as autistic
6 / 9 (66.7%)
  1. Christina Nicolaidis
  2. Dora M. Raymaker *
  3. Elesia Ashkenazy *
  4. Katherine McDonald
  5. Sebastian Dern *
  1. Mel 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

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
24
With a DOI
19
Without a DOI, from raw bibliography text
2
2 / 24 (8.3%) cited references include at least one author identified as autistic.
References with data to complete
1 / 24 (4.2%)
References with detected author names
24 / 24 (100.0%)
Without detected author names
0
Without a structured title
1
Without a stable identifier
2
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
93
From DOI or external metadata
93
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
0
28 / 93 (30.1%) names are linked to an author already present in AutiHub. 65 / 93 (69.9%) names are not yet linked.
Names linked to a person identified as autistic
11 / 93 (11.8%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 11 / 28 (39.3%). Distinct people identified as autistic: 6 / 83 (7.2%).
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