Health Care Transition Experiences for Rural and Urban Autistic Adolescents and Young Adults: A Qualitative Analysis

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Zhang, E., Snyder, M., Alduraidi, W., Hunley, S., Sohl, K., Cheak-Zamora, N., & Nelson, E. L. (2026). Health Care Transition Experiences for Rural and Urban Autistic Adolescents and Young Adults: A Qualitative Analysis. Autism, 30(10), 2584-2595. https://doi.org/10.1177/13623613261472991

Publication date: 9 Aug 2026 Added to AutiHub: 17 Oct 2026 Type: Article Article language: English
Publisher source (DOI) Full text OpenAlex source

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Authors

Publication authors
7
Autistic authors reported by the publication
1
  1. E Zhang
  2. Makenna Snyder
  3. Wafaa Alduraidi
  4. Spencer Hunley *
  1. Kristin Sohl
  2. Nancy Cheak-Zamora
  3. Eve-Lynn Nelson

Abstract

Health care transition (HCT) is underexplored among autistic adolescents and young adults (AYAs). We explored autistic AYAs’ HCT experiences through virtual semi-structured interviews with 19 participants (mean age = 21.4 years; range = 15–25). Data were analyzed using reflexive thematic analysis and interpreted through self-determination theory (SDT). Participants described HCT as marked by increased expectations for independent health care management without commensurate preparation, relational continuity, or structural support. Findings were organized around SDT domains of competence, autonomy, and relatedness, which were interconnected. Gaps in competence constrained autonomy and contributed to stress and care avoidance. Autonomy was negotiated and situational, often supported through ongoing caregiver involvement rather than full independence. Relatedness was undermined by fragmented care, limited continuity, and experiences of being dismissed by providers. Structural factors (transportation, insurance acceptance, provider availability, and rurality) shaped when and how these psychological needs could be met, amplifying transition-related challenges. Autistic AYAs want to take ownership of their care, but successful HCT depends on developmentally scaffolded skill-building, supportive interdependence, and health systems that foster competence, autonomy, and relatedness. Findings highlight the need for autism-responsive HCT models that incorporate gradual preparation, provider training, caregiver-supported autonomy, and structural accommodations, particularly in rural communities. Lay Abstract Moving from pediatric to adult health care can be challenging for autistic adolescents and young adults, especially in rural areas. We interviewed 19 autistic participants ages 15 to 25 to understand their experiences of health care transition. We analyzed interviews to identify themes and organized findings around three needs: feeling capable of managing health care (skills and confidence), having appropriate choice and control, and feeling supported and taken seriously by health care providers. Participants often described being expected to manage appointments, medications, and communication with providers more independently, without enough preparation or clear guidance. Many reported that limited skills or confidence made it harder to take charge of their care and contributed to stress and sometimes avoiding care. Independence was not “all-or-nothing”: participants described sharing responsibilities with caregivers in ways that changed across situations, rather than becoming fully independent at once. Participants also described challenges with continuity and relationships such as switching providers, fragmented services, and feeling dismissed, making it harder to feel understood and supported. Practical barriers shaped these experiences, including transportation, whether providers accepted insurance, limited local providers, and rural distance. Overall, participants wanted to take more ownership of their health, but they emphasized the need for step-by-step skill-building, supportive shared responsibility with caregivers, and health care systems that help autistic young people feel capable, in control, and supported, especially in rural communities.

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: 23 Oct 2026 07:41.

Cited references
44
With a DOI
39
Without a DOI, from raw bibliography text
5
4 / 44 (9.1%) cited references include at least one author identified as autistic.
References with data to complete
4 / 44 (9.1%)
References with detected author names
40 / 44 (90.9%)
Without detected author names
4
Without a structured title
4
Without a stable identifier
5
References with raw author names still to review
4
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
218
From DOI or external metadata
218
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
8
67 / 218 (30.7%) names are linked to an author already present in AutiHub. 151 / 218 (69.3%) names are not yet linked.
Names linked to a person identified as autistic
11 / 218 (5.0%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 11 / 67 (16.4%). Distinct people identified as autistic: 11 / 200 (5.5%).
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