Health Care Transition Experiences for Rural and Urban Autistic Adolescents and Young Adults: A Qualitative Analysis / E. ZHANG in Autism, 30-10 (October 2026)  

Public ISBD [article]  inAutism > 30-10 (October 2026) . - p.2584-2595 Titre : Health Care Transition Experiences for Rural and Urban Autistic Adolescents and Young Adults: A Qualitative Analysis Type de document : texte imprimé Auteurs : E. ZHANG, Auteur ; Makenna SNYDER, Auteur ; Wafaa ALDURAIDI, Auteur ; Spencer HUNLEY, Auteur ; Kristin SOHL, Auteur ; Nancy CHEAK-ZAMORA, Auteur ; Eve-Lynn NELSON, Auteur Article en page(s) : p.2584-2595 Langues : Anglais (eng) Mots-clés : autism  health care transition  rural  urban  adolescent  young adult Index. décimale : PER Périodiques Résumé : 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. En ligne : https://dx.doi.org/10.1177/13623613261472991 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=593 [article] Health Care Transition Experiences for Rural and Urban Autistic Adolescents and Young Adults: A Qualitative Analysis [texte imprimé] / E. ZHANG, Auteur ; Makenna SNYDER, Auteur ; Wafaa ALDURAIDI, Auteur ; Spencer HUNLEY, Auteur ; Kristin SOHL, Auteur ; Nancy CHEAK-ZAMORA, Auteur ; Eve-Lynn NELSON, Auteur . - p.2584-2595. Langues : Anglais (eng) in Autism > 30-10 (October 2026) . - p.2584-2595 Mots-clés : autism  health care transition  rural  urban  adolescent  young adult Index. décimale : PER Périodiques Résumé : 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. En ligne : https://dx.doi.org/10.1177/13623613261472991 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=593

Health care transition for autistic adolescents and young adults: A pilot rural and urban comparison survey study / Makenna SNYDER ; Wafaa ALDURAIDI ; Ezra KAISER ; Spencer HUNLEY ; Lacy WRIGHT ; Rebecca SWINBURNE ROMINE ; Eve-Lynn NELSON ; Nancy CHEAK-ZAMORA in Autism, 29-6 (June 2025)  

Public ISBD [article]  inAutism > 29-6 (June 2025) . - p.1403-1414 Titre : Health care transition for autistic adolescents and young adults: A pilot rural and urban comparison survey study Type de document : texte imprimé Auteurs : Makenna SNYDER, Auteur ; Wafaa ALDURAIDI, Auteur ; Ezra KAISER, Auteur ; Spencer HUNLEY, Auteur ; Lacy WRIGHT, Auteur ; Rebecca SWINBURNE ROMINE, Auteur ; Eve-Lynn NELSON, Auteur ; Nancy CHEAK-ZAMORA, Auteur Article en page(s) : p.1403-1414 Langues : Anglais (eng) Mots-clés : adolescents and young adults  autism spectrum disorder  health care transition  rural  urban Index. décimale : PER Périodiques Résumé : Autistic adolescents and young adults in rural areas often experience more unmet medical needs than their urban peers, particularly during the health care transition, the process of moving from pediatric to adult health care. This study aimed to understand the health care transition experiences of autistic adolescents and young adults (14-25 years old) across rural and urban settings through a structured survey assessing demographics, health care transition experiences, and future health care decision-making planning. Of 180 participants (urban: 96; rural: 84), the average age was 19.67 years. Slightly over half (53.3%) reported completing health care transition at an average age of 18.02 years. Only 40 participants had health care transition discussions with their doctors, typically starting at 17.78 years. Regarding future medical decision-making, autistic adolescents and young adults who completed the survey independently had significantly higher odds of anticipating future independent medical decision-making compared to those who had parental assistance in survey completion (odds ratio = 6.601, 95% confidence interval: 2.857-15.250, p < .001). These results emphasize the need for enhanced health care transition support for autistic adolescents and young adults, suggesting that health care transition should be integrated into broader transition planning, and tailored interventions should be developed to improve health care transition outcomes for adolescents and young adults, their caregivers, and providers.Lay abstract Autistic adolescents and young adults in rural areas face significant challenges in health care transition compared to their urban counterparts. Health care transition, the process of moving from pediatric to adult health care, is crucial for the long-term health outcomes of adolescents and young adults. Previous research indicates rural adolescents and young adults often have greater unmet medical and financial needs, affecting their transition experiences, but there was no study focusing on rural autistic adolescents and young adults" health care transition experiences. This pilot study provides a comparative analysis of the health care transition experiences of rural and urban autistic adolescents and young adults. Ninety-six urban and 84 rural participants (14-25 years old) participated in the study. Their average age was 19.67 years. Just over half of the participants had completed the transition to adult care, typically reporting finishing this process at around 18 years old. A majority had limited discussions with their doctors about transitioning, and those who had discussions often started these conversations late. It also reveals that the responses completed by or with parents of autistic adolescents and young adults tend to indicate that the adolescents and young adults would not make future medical decisions or are uncertain about it. The findings underscore the necessity for targeted support for autistic adolescents and young adults during their health care transition process, regardless of their residence. There is a clear need for targeted health care transition interventions for adolescents and young adults, parents, and health care providers to ensure autistic adolescents and young adults and their families receive adequate support during the health care transition process. En ligne : https://dx.doi.org/10.1177/13623613241304495 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=558 [article] Health care transition for autistic adolescents and young adults: A pilot rural and urban comparison survey study [texte imprimé] / Makenna SNYDER, Auteur ; Wafaa ALDURAIDI, Auteur ; Ezra KAISER, Auteur ; Spencer HUNLEY, Auteur ; Lacy WRIGHT, Auteur ; Rebecca SWINBURNE ROMINE, Auteur ; Eve-Lynn NELSON, Auteur ; Nancy CHEAK-ZAMORA, Auteur . - p.1403-1414. Langues : Anglais (eng) in Autism > 29-6 (June 2025) . - p.1403-1414 Mots-clés : adolescents and young adults  autism spectrum disorder  health care transition  rural  urban Index. décimale : PER Périodiques Résumé : Autistic adolescents and young adults in rural areas often experience more unmet medical needs than their urban peers, particularly during the health care transition, the process of moving from pediatric to adult health care. This study aimed to understand the health care transition experiences of autistic adolescents and young adults (14-25 years old) across rural and urban settings through a structured survey assessing demographics, health care transition experiences, and future health care decision-making planning. Of 180 participants (urban: 96; rural: 84), the average age was 19.67 years. Slightly over half (53.3%) reported completing health care transition at an average age of 18.02 years. Only 40 participants had health care transition discussions with their doctors, typically starting at 17.78 years. Regarding future medical decision-making, autistic adolescents and young adults who completed the survey independently had significantly higher odds of anticipating future independent medical decision-making compared to those who had parental assistance in survey completion (odds ratio = 6.601, 95% confidence interval: 2.857-15.250, p < .001). These results emphasize the need for enhanced health care transition support for autistic adolescents and young adults, suggesting that health care transition should be integrated into broader transition planning, and tailored interventions should be developed to improve health care transition outcomes for adolescents and young adults, their caregivers, and providers.Lay abstract Autistic adolescents and young adults in rural areas face significant challenges in health care transition compared to their urban counterparts. Health care transition, the process of moving from pediatric to adult health care, is crucial for the long-term health outcomes of adolescents and young adults. Previous research indicates rural adolescents and young adults often have greater unmet medical and financial needs, affecting their transition experiences, but there was no study focusing on rural autistic adolescents and young adults" health care transition experiences. This pilot study provides a comparative analysis of the health care transition experiences of rural and urban autistic adolescents and young adults. Ninety-six urban and 84 rural participants (14-25 years old) participated in the study. Their average age was 19.67 years. Just over half of the participants had completed the transition to adult care, typically reporting finishing this process at around 18 years old. A majority had limited discussions with their doctors about transitioning, and those who had discussions often started these conversations late. It also reveals that the responses completed by or with parents of autistic adolescents and young adults tend to indicate that the adolescents and young adults would not make future medical decisions or are uncertain about it. The findings underscore the necessity for targeted support for autistic adolescents and young adults during their health care transition process, regardless of their residence. There is a clear need for targeted health care transition interventions for adolescents and young adults, parents, and health care providers to ensure autistic adolescents and young adults and their families receive adequate support during the health care transition process. En ligne : https://dx.doi.org/10.1177/13623613241304495 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=558

Pilot rural-urban comparison of health care experiences among autistic adolescents and young adults / Wafaa ALDURAIDI ; Makenna SNYDER ; Ezra KAISER ; Spencer HUNLEY ; Ann DAVIS ; Eve-Lynn NELSON ; Nancy CHEAK-ZAMORA in Autism, 29-10 (October 2025)  

Public ISBD [article]  inAutism > 29-10 (October 2025) . - p.2425-2437 Titre : Pilot rural-urban comparison of health care experiences among autistic adolescents and young adults Type de document : texte imprimé Auteurs : Wafaa ALDURAIDI, Auteur ; Makenna SNYDER, Auteur ; Ezra KAISER, Auteur ; Spencer HUNLEY, Auteur ; Ann DAVIS, Auteur ; Eve-Lynn NELSON, Auteur ; Nancy CHEAK-ZAMORA, Auteur Article en page(s) : p.2425-2437 Langues : Anglais (eng) Mots-clés : adolescents and young adults  autism spectrum disorders  health care experiences  rural-urban comparison Index. décimale : PER Périodiques Résumé : 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. En ligne : https://dx.doi.org/10.1177/13623613251337506 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=567 [article] Pilot rural-urban comparison of health care experiences among autistic adolescents and young adults [texte imprimé] / Wafaa ALDURAIDI, Auteur ; Makenna SNYDER, Auteur ; Ezra KAISER, Auteur ; Spencer HUNLEY, Auteur ; Ann DAVIS, Auteur ; Eve-Lynn NELSON, Auteur ; Nancy CHEAK-ZAMORA, Auteur . - p.2425-2437. Langues : Anglais (eng) in Autism > 29-10 (October 2025) . - p.2425-2437 Mots-clés : adolescents and young adults  autism spectrum disorders  health care experiences  rural-urban comparison Index. décimale : PER Périodiques Résumé : 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. En ligne : https://dx.doi.org/10.1177/13623613251337506 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=567

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