Elucidating the Perspectives of Autistic Youth About Their Health Care Experiences: 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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O’Hagan, B., Foster, S., Ursitti, A., Crable, E. L., Friedman, A., Bartolotti, L., & Krauss, S. (2023). Elucidating the Perspectives of Autistic Youth About Their Health Care Experiences: A Qualitative Study. Journal of Developmental & Behavioral Pediatrics, 45(1), e39-e45. https://doi.org/10.1097/dbp.0000000000001228

Publication date: 23 Oct 2023 Added to AutiHub: 5 Jul 2026 Type: Article Article language: English
Publisher source (DOI) Full text OpenAlex source

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Authors

Publication authors
7
Publication authors identified as autistic
1 / 7 (14.3%)
  1. Belinda O’Hagan
  2. Sarah Foster *
  3. A. Ursitti
  4. Erika L. Crable
  1. Alexander Friedman
  2. Lauren Bartolotti
  3. Shari Krauss

Abstract

OBJECTIVES: Autistic individuals have higher rates of co-occurring medical conditions and service use. However, autistic individuals and their families also reported lower satisfaction with health care service delivery. Previous studies described health care experiences of autistic adults, but less is known about those of autistic adolescents and young adults. This study aimed to qualitatively describe the health care experiences of autistic youth. METHODS: Four longitudinal/serial focus groups were conducted with 8 autistic adolescents and young adults. Participants were members of an autistic patient advisory board, which is part of a broader initiative at a large, urban, safety-net hospital to improve the health care experiences of autistic patients. Focus groups were conducted virtually and were audio-recorded. Audio recordings were transcribed and verified for accuracy. Transcripts were consensus-coded with an inductive approach using tenets of grounded theory. RESULTS: Findings included 4 recurring themes: accessibility and accommodations, barriers of health service use, patient involvement in health care decisions, and facilitators of patient-clinician relationship. Participants noted that visit preparation, sensory items, and repeated positive interactions with clinician were helpful to build a positive health care experience. CONCLUSION: Our findings support previous research that suggest the need to individualize care, ensure availability of accommodations, apply flexibility in practice whenever possible, and increase health care professional knowledge about this unique patient population.

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 01:00.

Cited references
30
With a DOI
29
Without a DOI, from raw bibliography text
0
4 / 30 (13.3%) 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
0
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
154
From DOI or external metadata
154
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
0
75 / 154 (48.7%) names are linked to an author already present in AutiHub. 79 / 154 (51.3%) names are not yet linked.
Names linked to a person identified as autistic
11 / 154 (7.1%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 11 / 75 (14.7%). Distinct people identified as autistic: 9 / 130 (6.9%).
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