Elucidating the Perspectives of Autistic Youth About Their Health Care Experiences: A Qualitative Study

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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
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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.

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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
2 / 30 (6.7%)
Cited author occurrences identified as autistic
5 / 154 (3.2%)
Among occurrences linked to AutiHub author records: 5 / 69 (7.2%). Distinct cited authors identified as autistic: 5 / 130 (3.8%).
Cited author occurrences linked to AutiHub author records
69 / 154 (44.8%)
Distinct linked cited authors: 47 / 130 (36.2%)
Linked cited-author occurrences not identified as autistic
64 / 69 (92.8%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 64 / 154 (41.6%). Distinct linked cited authors not identified as autistic: 42 / 47 (89.4%).
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