Pilot rural–urban comparison of health care experiences among autistic adolescents and young adults

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Zhang, E., Alduraidi, W., Snyder, M., Kaiser, E., Hunley, S., Davis, A., Nelson, E. L., & Cheak-Zamora, N. (2025). Pilot rural–urban comparison of health care experiences among autistic adolescents and young adults. Autism, 29(10), 2425-2437. https://doi.org/10.1177/13623613251337506

Publication date: 9 May 2025 Added to AutiHub: 22 Oct 2026 Type: Article Article language: English
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Authors

Publication authors
8
Publication authors identified as autistic
1 / 8 (12.5%)
  1. E Zhang
  2. Wafaa Alduraidi
  3. Makenna Snyder
  4. Ezra Kaiser
  1. Spencer Hunley *
  2. Ann Davis
  3. Eve-Lynn Nelson
  4. Nancy Cheak-Zamora

Abstract

Autistic adolescents and young adults face barriers to accessing health care, particularly during the pediatric-to-adult care transition. This study compared health care access, utilization, and provider interactions between rural and urban autistic adolescents and young adults. Autistic adolescents and young adults (N = 180) aged 14–25 were recruited through autism registries and community agencies across multiple US states from October 2022 to June 2023. They completed the Health Care Transition Experience Survey, a 51-item questionnaire evaluating health care experiences. Rural–urban differences were analyzed through descriptive and inferential statistics. Rural autistic adolescents and young adults (n = 84) relied more on a single health care location, while urban autistic adolescents and young adults (n = 96) more often used multiple providers (72.6% vs 56.3%, p = 0.046). Rural autistic adolescents and young adults reported greater challenges with providers lacking autism-specific knowledge (40.5% vs 24.0%, p = 0.017) and limited nearby providers (57.1% vs 26.0%, p < 0.001). They also encountered more issues with dental insurance acceptance (46.4% vs 12.5%, p = 0.015), while urban autistic adolescents and young adults more often lacked dental insurance (33.3% vs 3.6%, p = 0.008). Significant rural–urban disparities were found in health care experiences, particularly provider availability and autism expertise in rural areas. Targeted interventions addressing rural health care barriers and enhanced provider training in autism care are needed. Lay abstract Health care can be especially challenging for young autistic people, particularly when they move from child to adult health care. Our pilot study looked at whether the health care experiences are similar or different for autistic young people living in rural areas versus urban areas. We surveyed 180 autistic people aged 14–25 years about their health care experiences, including 96 from urban areas and 84 from rural areas. The survey asked about their experiences in finding providers, getting appointments, working with providers, and how well their providers understood autism. The results showed that rural young autistic people face some unique challenges. They often had to travel farther to find providers. They were more likely to work with one provider and report that their providers did not understand autism well compared to urban young autistic people, who often could choose between different providers. Interestingly, both rural and urban participants felt similarly about how well they could talk with their providers once they started working with them. Dental care stood out as particularly challenging among different health care services—rural participants had trouble finding dentists who accepted their insurance, while urban participants were more likely to have no dental insurance at all. These findings highlight important areas for improvement. Rural communities need more autism-trained providers and better access to nearby health services. In urban areas, addressing gaps in insurance coverage is critical. Together, we should improve care for all young autistic people, no matter where they live.

Bibliography cited by this reference

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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 07:46.

Cited references
41
With a DOI
35
Without a DOI, from raw bibliography text
5
6 / 41 (14.6%) cited references include at least one author identified as autistic.
References with data to complete
3 / 41 (7.3%)
References with detected author names
38 / 41 (92.7%)
Without detected author names
3
Without a structured title
3
Without a stable identifier
4
References with raw author names still to review
3
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
390
From DOI or external metadata
390
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
4
81 / 390 (20.8%) names are linked to an author already present in AutiHub. 309 / 390 (79.2%) names are not yet linked.
Names linked to a person identified as autistic
21 / 390 (5.4%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 21 / 81 (25.9%). Distinct people identified as autistic: 13 / 371 (3.5%).
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