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

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.

Introduction

Access to high-quality health care remains a persistent challenge for autistic individuals, due to systemic and interpersonal barriers that impede timely and appropriate care (Anderson et al., 2018; Bishop-Fitzpatrick & Kind, 2017). These challenges are particularly pronounced during the transition from pediatric to adult health care, a critical period known as health care transition (HCT). The goal of HCT is to support adolescents and young adults (AYAs) in developing the skills needed to manage their health care and to ensure an organized process in health care practices to facilitate transition preparation, transfer of care, and integration into adult-centered care (Got Transition, 2026). HCT involves various activities and skills, such as identifying adult providers, developing self-advocacy skills, managing medications, and navigating increasingly complex health systems.

In the United States, HCT occurs within a fragmented health care and social service system, with access varying by insurance type, income, state policy, and geography (Tikkanen et al., 2020). For autistic AYAs, the move to adult care may coincide with loss of child-focused services, changing eligibility for adult supports, and potential changes in dependent insurance coverage after age 26 (Laxman et al., 2019; Rosenbaum, 2011). These overlapping changes make HCT especially consequential in the U.S. context.

Autistic AYAs often experience greater challenges during the HCT from pediatric to adult services (Anderson et al., 2018). Disruptions in continuity of care during this process can negatively affect long-term health, well-being, and quality of life (Colver et al., 2018). These vulnerabilities are reflected in population-level disparities, including higher emergency department utilization, greater unmet health care needs, and reduced access to preventive care among autistic individuals (Vohra et al., 2016; Walsh et al., 2020).

Many autistic AYAs have co-occurring physical and mental health conditions (Christensen & Zubler, 2020; Micai et al., 2023), increasing care complexity at a time when adult health systems expect greater self-management and independence. Communication challenges can further complicate symptom reporting and shared decision-making, especially as long-standing pediatric relationships are disrupted and new adult providers are introduced (Nicolaidis et al., 2014). At the same time, many providers report limited training and confidence in delivering autism-competent care (Zerbo et al., 2015), and adult clinical environments often present sensory and organizational demands that are difficult to navigate (Mason et al., 2019). These factors converge during HCT and contribute to fragmented care and unmet needs among autistic AYAs.

In addition to conditions directly related to health status, social drivers of health, or social determinants of health (SDOH), the “non-medical conditions in which people are born, grow, work, live, and age” significantly shape health outcomes (World Health Organization [WHO], 2026). Rurality represents a particularly salient social driver for autistic AYAs, as rural communities often face shortages of providers with autism-specific expertise (Mandell et al., 2009), limited transportation infrastructure, and longer travel distances to care (Antezana et al., 2017). These barriers further constrain access to adult providers during HCT, exacerbating existing disparities in continuity and quality of care.

These challenges are intensified by the well-documented “service cliff,” in which autistic young adults experience reduced access to coordinated support after aging out of child-focused systems (Shattuck et al., 2018). Although structured transition supports in education and employment have shown promise (Anderson et al., 2018), HCT planning within health care systems remains underdeveloped (Kuhlthau et al., 2015).

To interpret how autistic AYAs experience this transition, the present study draws on self-determination theory (SDT), which posits that competence, autonomy, and relatedness are basic psychological needs during developmental transitions (Deci & Ryan, 2000, 2013). Although many HCT challenges are shared across AYAs with special health care needs (Colver et al., 2018), autistic AYAs may experience these challenges differently because of communication differences, sensory experiences, and the social and organizational demands of adult health care (Mason et al., 2019; Nicolaidis et al., 2014; Zerbo et al., 2015). SDT provides a useful framework for examining how these experiences support or constrain competence, autonomy, and relatedness during HCT and for interpreting which aspects of transition may be particularly salient for autistic AYAs. SDT has been applied across health and developmental contexts, including autism, to understand motivation and self-regulation (Andrews et al., 2024; Cheak-Zamora et al., 2020; Goldfarb et al., 2023). During HCT, increasing expectations for self-management and new relationships with adult providers place growing demands on competence, autonomy, and relatedness.

Despite the recognized needs for and benefits of HCT interventions, empirical research remains limited, especially for autistic AYAs from rural communities. A limited number of qualitative and mixed-methods studies have examined transition planning (Kuhlthau et al., 2015) and stakeholder perspectives (Cheak-Zamora et al., 2015), yet few have centered autistic AYAs’ own experiences, and none, to our knowledge, have examined how these experiences differ across rural and urban contexts. Accordingly, this qualitative study uses interviews with autistic AYAs to examine HCT experiences through an SDT lens, with rurality considered as a structural context that may shape access, support, and transition-related needs.

Method

Research Design

We conducted semi-structured virtual interviews to understand the HCT experience among autistic AYAs. Interviewees were recruited from a larger sample of autistic AYAs who participated in a survey study (Zhang et al., 2024). Those who expressed interest in the interview completed a consent form through REDCap, a secure survey and data management system (Harris et al., 2009, 2019). For participants under 18 years old, parent/guardian consent and youth assent were obtained. This study was approved by the institutional review board (IRB) of the lead author’s institution. Participants received a $70 gift card as compensation.

Participants and Recruitment

Eligible participants were between 14 and 25 years old, had been diagnosed with autism spectrum disorder (ASD), and could engage in conversation using their preferred communication mode (e.g., verbal, written, and/or Augmentative and Alternative Communication [AAC] devices) independently or with support from a care partner as needed. Recruitment sources included three registries: the Simons Foundation SPARK Research Match Program, an Autism Research Registry associated with a regional medical center, and a distribution list of community agencies that serve families of children and young adults with disabilities (Zhang et al., 2024). The SPARK Registry and the regional medical center registry have their own eligibility and screening processes to confirm participants’ ASD diagnoses (Fombonne et al., 2022). More detailed recruitment process information is available in the article reporting the survey results (Zhang et al., 2024).

Participants provided their zip codes in a demographic survey, enabling the assignment of a rural–urban commuting area (RUCA) code. RUCA codes are commonly used to classify rurality in health research (Health Resources & Services Administration [HRSA], 2025). RUCA codes 1 to 3 were considered urban, and codes 4 to 10 were considered rural areas. Of the 100 survey participants who expressed interest in interviews, we scheduled the interviews with a first-come, first-served approach while prioritizing rural participants due to their historical underrepresentation (Verdecias-Pellum et al., 2025).

Nineteen autistic AYAs completed the interviews. Four participants completed interviews with a parent present as a support person. Participants self-identified their transition status in the demographic survey by responding to the question: “Have you transitioned to an adult health care provider or an adult model of care?” Multiple-choice responses included “I have transitioned from a pediatric doctor to an adult doctor,” “I have transitioned from a pediatric model of care to an adult model of care without changing my doctor,” “I have transitioned from a pediatric model of care to an adult model of care by changing my doctor,” “I have NOT transitioned, but I am actively working on the transition,” or “I have NOT transitioned, and I am not working on the transition or plan to work on it anytime soon.” These responses were categorized into “Transitioned” and “Not transitioned.” The mean age for all 19 participants was 21.4 years (range = 15–25 years). For those who had transitioned, the reported age when that occurred (n = 13) was 18 years (range = 14–23). Participants reported an average of four co-occurring conditions (physical, psychological, and developmental; range = 0–12). Table 1 presents additional demographic characteristics by rural/urban classification. See more detailed demographic information on each participant in the Supplemental Files. Participant characteristics were summarized descriptively by rural–urban classification and transition status to contextualize the qualitative findings; inferential subgroup comparisons were not conducted given the small qualitative sample and exploratory aims.

Table 1.

Participant Demographic Characteristics.

	Rural (n = 7)	Urban (n = 12)	Total (N = 19)
Characteristic	n (%)	n (%)	n (%)
Gender identity
Woman	2 (28.6)	5 (41.7)	7 (36.8)
Man	4 (57.1)	5 (41.7)	9 (47.4)
Transgender	1 (14.3)	0	1 (5.3)
Non-binary	0	2 (16.7)	2 (10.5)
Racea
White	6 (85.7)	11 (91.7)	17 (89.5)
Asian	0	1 (8.3)	1 (5.3)
AI/AN	1 (14.3)	1 (8.3)	2 (10.5)
Education
<High school	2 (28.6)	1 (8.3)	3 (15.8)
High school	1 (14.3)	3 (25.0)	4 (21.1)
Some college	2 (28.6)	4 (33.3)	6 (31.6)
4-year degree	2 (28.6)	3 (25.0)	5 (26.3)
Graduate degree	0	1 (8.3)	1 (5.3)
Health insurance
Public	3 (42.9)	2 (16.7)	5 (26.3)
Private	2 (28.6)	8 (66.7)	10 (52.6)
Combination	2 (28.6)	2 (16.7)	4 (21.1)
Employment
Full-time	1 (14.3)	4 (33.3)	5 (26.3)
Part-time	2 (28.6)	5 (41.7)	7 (36.8)
Unemployed	4 (57.1)	3 (25.0)	7 (36.8)
Transition status
Transitioned	4 (57.1)	9 (75.0)	13 (68.4)
Not transitioned	3 (42.9)	3 (25.0)	6 (31.6)

Note. AI/AN = American Indian/Alaska Native.

^aParticipants could select more than one response; therefore, percentages may sum to more than 100%.

Participatory Methods and Positionality

Study design and interview guide development were informed by an advisory board of autistic individuals, caregivers, and professionals, with representation from both urban and rural communities. We purposively recruited board members with lived experience and expertise in autism and HCT and compensated all board members with an hourly rate of $70 to ensure equitable compensation. Further details on the Advisory Board are available in our survey methods paper (Zhang et al., 2024). One author is autistic and has direct personal experience with HCT. The first author has extensive clinical and research experience working with autistic AYAs and has a physical disability. Members of the research team brought backgrounds in autism, disability studies, and HCT, and several have lived experience of disability. We recognize that these identities and experiences shaped our rapport with participants, our sensitivity to structural and interpersonal barriers, and analytic priorities. We engaged in reflexive memoing and regular team discussion throughout analysis to surface and examine these assumptions.

Procedure

We developed the semi-structured interview guide through multiple research team discussions and three meetings between the research team and the advisory board. The topics included were based on literature related to HCT for AYAs. Because HCT is a relatively new concept to many participants, we contextualized HCT by starting with questions on broad transition experiences related to education, employment, and living independently. We then asked participants to define health care and HCT before sharing our study definitions to ensure shared understanding. See this guide in the Supplemental Files.

Interviews lasted approximately 60 to 90 min, with breaks offered and honored as necessary. Interviews were conducted one-on-one with autistic AYAs via Zoom. Participants could have support people present. Interviewees verbally confirmed their identity and consented to the interview before the interview began. Participants could turn their cameras on or off and use other features such as captioning or chats for accessibility. Zoom’s embedded caption/transcription function was enabled for accessibility and used as a rough draft; transcripts were then cleaned and verified by team members. All transcripts were de-identified and uploaded to Dedoose Version 9.2.22b for analysis, a cloud-based qualitative and mixed-methods analysis platform.

Data Analysis

We used a two-phase analytic approach combining inductive reflexive thematic analysis, followed by theory-informed interpretation. Inductive analysis followed the six-step process for qualitative analysis as described by Braun and Clarke (2006). First, three coders (E.Z., M.S., W.A.) familiarized themselves with the de-identified transcripts through repeated reading and reflexive memoing to document initial impressions. Transcripts were then coded line by line using Dedoose inductively to reflect the surface content of participant responses. After coding three transcripts, the coders collaboratively developed an initial codebook by organizing codes into higher-order “code buckets” that reflected shared conceptual patterns. Code definitions were refined through team discussion to support a shared understanding. To support reflexive dialogue around code interpretation, authors M.S. and W.A. each independently applied the draft codebook to two randomly selected transcripts. The coders met and discussed points of convergence and divergence, resulting in further clarification and refinement of code definitions.

Following codebook development, one author (M.S.) completed coding of the remaining transcripts. Once all transcripts were completed, the team met to review the individual codes, group them based on topic, and refine candidate themes. Consistent with reflexive thematic analysis, we emphasized depth of analytic engagement and interpretive coherence rather than quantified intercoder reliability. Analytic rigor was supported using strategies described by Cofie et al. (2022), including multiple coders during codebook development, inclusion of a coder not involved in data collection, dialogue to develop shared understanding of code meanings, and iterative codebook refinement. Interpretive coherence was established by evaluating whether candidate themes were grounded in participant accounts, internally coherent, distinct from one another, aligned with the study aims, and meaningfully connected to the SDT-guided interpretation.

After inductive theme development, we used SDT (Deci & Ryan, 2012) as a theory-informed framework to organize and interpret themes. Specifically, inductively derived themes were interpretively examined and mapped onto SDT constructs of competence, autonomy, and relatedness to understand how participants described need satisfaction or frustration during HCT. This theory-driven interpretive step informed theme naming, comparison across themes, and higher-level analytic interpretation, rather than constraining initial coding. SDT conceptualizes psychological well-being as arising from the satisfaction of these three basic psychological needs and emphasizes the process of internalization, whereby individuals integrate external expectations into personally meaningful values. This concept guided our interpretation of how autistic AYAs described navigating adult-oriented health care norms and expectations in relation to their self-identity and sense of agency.

Analytic Rigor and Trustworthiness.

Analytic rigor was supported through multiple strategies consistent with qualitative standards for trustworthiness (Nowell et al., 2017). Reflexive memoing and an audit trail were used to document analytic decisions, emerging interpretations, codebook revisions, and theme refinements. Regular team meetings provided opportunities to examine alternative interpretations, challenge assumptions, and assess whether candidate themes were grounded in participant accounts, internally coherent, distinct from one another, and aligned with the study aims and SDT-guided interpretation. Although one author conducted the majority of coding following codebook development, credibility and dependability were supported through iterative team review and consensus-oriented interpretation. Parent presence was treated as contextual information during analysis, and overarching themes were reviewed for consistency across AYA-only and parent-accompanied interviews.

Results

Findings are organized around the SDT domains of competence, autonomy, and relatedness. Rural–urban classification was used as a contextual lens within each domain, and we describe rural–urban patterns where they were evident, while emphasizing how structural conditions shaped participants’ HCT experiences across settings.

Gaps in Competence

In the context of HCT, competence refers to having the knowledge, skills, and perceived capability needed to manage one’s health care and interact effectively with the health system. Participants described limited preparation and support from health care systems for developing these competencies.

Autistic AYA participants described a mismatch between provider expectations and their readiness to manage health care independently. Participants reported that providers often assumed familiarity with health care processes. As one participant noted, “They kind of expected us to know what we were doing, instead of talking us through how these things work” (R5). (Participant quotations are labeled using an alphanumeric identifier indicating geographic context [R = rural; U = urban] and participant number.) Participants described confusion and anxiety, particularly when attending visits alone for the first time. One participant said: “I was half panicking because I didn’t really know what I was supposed to be doing . . . no one told me” (U10). Several participants reported limited knowledge of their own medical history, which made responding to provider questions challenging.

Autistic AYAs also expressed uncertainty, ambivalence, and inadequacy when managing insurance and payment responsibilities. Most remained under their parents’ insurance policy, with a handful using benefits through their employer. Many reported only a vague understanding of insurance, “I do have my own insurance, but I don’t do that much [with it]” (U5). Others described learning to navigate insurance independently through trial and error, such as contacting insurers about medication coverage or identifying allowable benefits for transportation. These skills were often self-taught and unevenly developed across participants.

Medical encounters were commonly described as stressful and overwhelming. Participants described hesitancy in scheduling appointments or fully participating in appointments. They reported using coping strategies to manage discomfort during appointments, including listening to music, looking away, or disengaging from procedures. While these strategies reduced distress, some participants noted that they also limited their engagement with providers and awareness of their own bodily cues.

To buffer the effects of these gaps in competence, autistic AYAs articulated various explicit and implicit skills that they had developed, were developing, or had yet to develop at the time of the interview. These included recognizing when care is needed, communicating symptoms to doctors and parents, and “bouncing back” from unexpected barriers. Table 2 lists the competencies identified by participants. They viewed these skills as works in progress, often shaped by trial and error.

Table 2.

Health Care Transition Skills, AYA Strategies, and Parental Scaffolding.

HCT skill area	AYA skills and strategies	Parental scaffolding and support
Preparing for an appointment	• Monitor and manage symptoms at home • Recognize bodily signals and ongoing health concerns • Maintain health-related routines (e.g., nutrition, activity) • Contact medical offices and schedule appointments • Establish care with new providers • Access prior medical records • Prepare questions or concerns in advance	• Assist with symptom monitoring and decision-making about when to seek care • Model appointment scheduling and provider communication • Help identify and establish care with adult providers • Share personal strategies for navigating the health care system • Provide reminders for upcoming appointments • Explain the health care process and expectations
During the Appointment	• Attend appointments independently or with support • Complete paperwork with or without assistance • Communicate symptoms, concerns, and questions • Understand personal medical history • Take notes or request written instructions • Participate in shared decision-making	• Encourage the AYA to lead communication while providing backup as needed • Support advocacy if concerns are dismissed or misunderstood • Model or supervise completion of paperwork • Gradually transfer responsibility for tasks (e.g., one task per visit) • Provide transportation and insurance coverage as needed • Explain insurance use, billing, and copays
After the appointment	• Recall and interpret provider recommendations • Decide among treatment options • Communicate with pharmacies and providers • Schedule follow-up visits • Use patient portals • Take medications as prescribed	• Review visit information together and clarify next steps • Assist with identifying in-network specialists • Help organize medications and treatment plans • Set reminders for medications or follow-up care • Provide financial support for medications or services when needed

Note. Skills were identified from autistic AYAs’ descriptions of their own experiences and reflect developmentally scaffolded, interdependent approaches to health care transition rather than expectations of full independence.

Structural Context Influencing Competence.

Limited provider availability, insurance restrictions (including Medicaid acceptance), and transportation barriers constrained access to care and reduced opportunities to learn how adult health systems function. Participants described these barriers as external to their own abilities, emphasizing that difficulties navigating health care were often driven by system features rather than individual skill deficits. Geographic context further shaped these experiences, with rural participants describing greater constraints related to provider scarcity and travel distance, while urban participants more often emphasized complexity and fragmentation within available systems. Some noted that their HCT from pediatric to adult providers was dictated by their rural location. One participant shared: “I grew up in a really rural area, so there wasn’t a ton to choose from already that took our insurance. My mom essentially just brought me to the doctor that she already sees” (U7).

Parental involvement served as a key compensatory resource, with many participants relying on parents to manage appointments, interpret medical information, or advocate during visits. The extent of this reliance was influenced by participants’ perceptions of their parents’ health system knowledge and prior experiences with care. One AYA identifying as American Indian noted that their parents’ health care experiences as children growing up on a reservation impacted their ability to coordinate care for their autistic child. R5 stated, “Their health care was even more lacking than mine. There were some things that they just didn’t realize required a doctor, didn’t know if the doctor could help.”

Seeking Autonomy

In the context of HCT, autonomy refers to an adolescent or young adult’s capacity and opportunity to direct, participate in, and take responsibility for their health care in ways that align with their values, preferences, and self-identity. The desire for autonomy was a consistent thread running through all participant reflections. Even in defining HCT, AYAs highlighted the importance of “taking charge” or “taking ownership” of responsibilities previously managed by their parents.

Several participants initially described themselves as fully independent in managing their health care, but later accounts revealed continued reliance on caregivers for specific tasks. One participant noted that her mother still gives her advice about eating vegetables or exercising, and she “chooses to follow her advice,” recognizing that “it’s still my decision now what I do with myself” (U2). These narratives highlighted differences between perceived autonomy and enacted autonomy in daily health care management. As one participant noted, “I can’t think of anything that has gone bad. I can’t think of anything bad that would have happened [during the transition]” (U5), despite describing ongoing parental involvement elsewhere in the interview.

Some highlighted HCT as a gradual process, using phrases such as “step by step,” “stages,” “adapting,” and “moving away.” Participants noted that a completed or “successful” HCT meant independently managing or “handling” health care tasks and making health care decisions. Some described a gradual transition period of a few months to a few years, while many felt suddenly “thrown into it.” Needing more time to transition was a common issue among participants who did not transition gradually. “I feel like we are forced into it, but at the same time, no one trusted us to do it” (R5).

Autonomy in HCT for autistic AYAs is a complex interplay between self-awareness, parental involvement, and provider responsiveness. Many participants emphasized the importance of “listening to your body” to identify warning signs for physical and mental health concerns. Some relied on their parents to decide if their symptoms were “doctor-worthy” (U2) or could be managed at home first, while others wanted more knowledge about their own medical history and symptoms and expressed frustration with their reliance on their parents. “I wish I didn’t have to ask my mom to figure out what’s wrong with me. I wish I could just sit down, look in a mirror, and, you know, write down what issues I’ve been having” (U10).

While some viewed parental support as a helpful safety net, some found it “embarrassing.” A handful of participants found their parents’ involvement intrusive or misaligned with their desire for independence. One participant explained, “this is my health. I’m not a kid anymore. This is about me. [I] take care of my own stuff” (R4).

Autistic AYAs described a trade-off between asserting autonomy with their provider and ensuring their health care needs were met. Participants viewed self-advocacy as the main strategy for overcoming this barrier, often by refusing treatments they disagreed with. “If there’s something I don’t want to take, or I think it’s just a bad idea, I won’t even go down that road. I just won’t” (U8).

Structural Context Influencing Autonomy.

Structural conditions also influenced how participants enacted autonomy during HCT. Transportation access, geographic location, insurance coverage, and life transitions such as college attendance shaped participants’ ability to independently attend appointments, make health care decisions, and follow through with care. Transportation emerged as a key factor. Rural participants frequently described reliance on their parents to assist with transportation, constraining independent action despite a desire to manage their own care. In contrast, urban participants described greater logistical independence through access to public transit or rideshare services. As one participant noted,

When I lived in a more rural area, I needed transportation support because there was no other option. . . . my mother had to take me to appointments. Now, I’m able to do that independently because I live somewhere with different transportation options. (U7)

Financial barriers to transportation directly affected access to care for some participants, with tangible health consequences. One participant said,

I must go on a two-hour trip to see my neurologist for Botox injections. The last time I didn’t get them on time, I ended up in the ER three days in a row. Trying to pay to go to these appointments is getting difficult and . . . there’s nothing closer. (R5)

Even when transportation was available, autonomy remained constrained by system complexity. Urban participants often continued to rely on caregivers to navigate insurance systems, coordinate care, or manage costs, highlighting that autonomy in HCT extends beyond physical access to appointments. Life transitions, such as college attendance, further disrupted HCT by introducing uncertainty in insurance coverage and care continuity. Several participants described delaying or forgoing care decisions in anticipation of changing eligibility or coverage. One participant opted out of vision and dental insurance during open enrollment due to an expected move for college, while another relied on campus counseling services despite recognizing limitations: “[I had] on-campus counseling . . . I know this is not the best way to deal with things, and that kind of put me off seeing mental health services, and then my current insurance doesn’t really cover mental health” (U7). Across settings, participants described autonomy as shaped by both individual readiness and access to coordinated systems.

Desire for Relatedness

In the context of HCT, relatedness refers to an adolescent or young adult’s experience of being understood, respected, and supported within health care relationships as responsibility for care shifts from pediatric to adult systems. Autistic AYAs identified patient–provider relationships as essential to a smooth HCT process. Participants described variability in how providers supported the transition process. Some reported receiving guidance or recommendations from pediatric or family medicine providers prior to transitioning, while others reported little or no discussion of HCT. Participants expressed disappointment when long-standing pediatric relationships ended without structured transition support, noting that the loss of familiar providers made it more difficult to establish trust in adult care settings. Many participants wished that their pediatric providers had provided transition support: “I wish that my pediatric care may have done a bit more . . . given some more recommendations . . . she was a good doctor. I just don’t think she helped as much with the transition piece” (U6).

One major barrier to establishing relatedness and rapport identified by participants was the impression that they were not being taken seriously or listened to by providers. Several recounted situations in which their concerns were minimized or not acted upon until a parent intervened. One participant shared, “Sometimes I’ll be talking about something . . . super important, and he’s like, ‘Oh, no, it’s just fine.’ Then my mom came in . . . and suddenly it mattered” (R3). Participants further described frustration and reluctance to communicate concerns independently after those encounters.

Autistic AYAs consistently expressed a desire for clear communication and relational continuity with providers. Participants valued providers who took time to explain information, answer questions, and engage them as partners in care. In contrast, participants described many encounters as transactional, with limited opportunity to build rapport. As one participant noted, “You just don’t get to know your doctor . . . every appointment is the same” (U2). Difficulty establishing rapport was described as a barrier to trust and comfort during appointments.

Structural Context Influencing Relatedness.

Participants identified structural features of the health care system that impeded the development of relatedness, including long wait times, difficulty establishing care with new providers, and limited appointment availability. Uncertainty around scheduling and delays in care were described as anxiety-provoking and discouraging. One rural participant noted that an appointment with his hometown physician was difficult due to “how in-demand he was” (R1). Participants insured through Medicaid reported particular difficulty finding providers, which further constrained choice and continuity.

Geographic context influenced how participants experienced relatedness with providers during HCT. Some rural participants described maintaining care with a limited number of providers over time, sometimes facilitated through family or community connections, which supported familiarity but constrained choice and access to providers familiar with autism-related needs. In contrast, urban participants more frequently described limited continuity and difficulty forming relationships with new providers.

Participants insured through Medicaid described persistent challenges finding a physician who accepted Medicaid, “like a needle in a haystack” (U9). Across settings, participants questioned whether the care they received reflected equitable access. As one participant stated, “It is more difficult because it’s like more time, energy, and resources have to be given just to get the same level of care that others might receive” (R1). Together, these structural conditions limited opportunities for sustained, trusting relationships with providers, shaping participants’ experiences of relatedness during HCT.

Discussion

This qualitative study examined HCT experiences among autistic AYAs using SDT as an organizing framework, with attention to competence, autonomy, and relatedness and to how these domains are shaped by structural context, including rurality. Across interviews, participants described HCT as a period marked by increased expectations for independent health care management in the absence of commensurate preparation, relational continuity, or structural support. While HCT continues to be defined and operationalized across the literature (Betz et al., 2023), participants’ experiences are consistent with conceptualizations of transition as a developmental process involving ownership of care and system navigation (Verdecias-Pellum et al., 2025). Extending this literature, our findings suggest that autistic AYAs’ HCT experiences are shaped by unmet psychological needs for competence, autonomy, and relatedness, which are influenced by both individual capacities and structural conditions. These psychological needs were deeply interconnected in participants’ accounts, with unmet needs in one domain often amplifying challenges in others.

Participants’ accounts highlight how competence and autonomy are jointly constructed during HCT. Gaps in competence—such as limited understanding of insurance, appointment logistics, or communication with providers—often constrained participants’ ability to act autonomously, contributing to stress, overwhelm, and avoidance of care (Galvin & Richards, 2023; Shaw et al., 2024). These findings extend prior research on health care navigation challenges among autistic individuals by situating them within the HCT period, when expectations for self-management increase rapidly while formal supports often diminish. Importantly, participants’ accounts suggest that competence during HCT is shaped not only by individual skills, but by whether health systems actively scaffold the transition to adult care or leave AYAs to learn through trial and error.

Autonomy emerged as a central goal of HCT, yet participants described substantial variability in how and when responsibility for care was assumed. Some experienced gradual, supported transitions, while others felt abruptly unprepared for adult care. Discrepancies between perceived and enacted autonomy were common, suggesting that some AYAs may overestimate their preparedness for HCT and underestimate its complexity, a pattern reported in the transition age population (Chapados et al., 2024; Sawicki et al., 2014). These findings underscore the importance of pacing and scaffolding during HCT to support realistic self-assessment and progressive skill development within an interdependent framework.

Interdependence is a salient and developmentally appropriate framework for understanding autonomy during HCT among autistic AYAs. Rather than describing autonomy as a linear shift from dependence to independence, participants described it as negotiated, situational, and often supported by caregiver involvement. Autonomy was enacted through directing one’s care while selectively relying on caregivers for transportation, communication, or decision-making support. This reframes autonomy not as the absence of support, but as the ability to exercise agency within a network of relational and structural supports. Consistent with prior research, parental involvement in health care decision-making is complex and variably experienced (Cheak-Zamora & Teti, 2015). Some AYAs viewed it as protective or facilitative, while others experienced it as constraining. These findings challenge HCT models that equate successful transition with full independence and suggest that supported autonomy may better reflect autistic AYAs’ lived experiences and developmental needs (Cribb et al., 2019; Moser et al., 2024).

Participants described difficulty establishing relatedness with health care providers during HCT, particularly when their concerns were minimized or required parental validation to be addressed. These experiences align with existing literature on communication barriers and perceived dismissal in health care encounters involving autistic individuals (Shaw et al., 2024). The present findings extend this work by showing how disruptions in relatedness are intensified during HCT, when long-standing pediatric relationships end and new adult providers are introduced. Participants emphasized the importance of being listened to, having information explained clearly, and developing continuity with providers. When these elements were absent, participants described frustration and reduced willingness to engage independently in care.

Structural conditions shaped how competence, autonomy, and relatedness were experienced during HCT. Participants described barriers related to provider availability, insurance acceptance, transportation, and scheduling, which constrained opportunities to practice skills, act independently, and build relationships with providers. Rural participants often described provider scarcity and travel distance, whereas urban participants more frequently described system complexity and fragmented care. These findings are consistent with broader literature on geographic health disparities (Antezana et al., 2017; Serchen et al., 2025) but extend it by demonstrating how rurality appeared to amplify transition-related challenges rather than produce an entirely distinct set of needs. Across settings, structural barriers interacted with individual and relational factors to shape HCT experiences.

Implications for Policy and Practice

Findings underscore the need for autism-responsive HCT supports that recognize autonomy as relational and developmentally situated rather than synonymous with independence. Pediatric providers should initiate HCT preparation early and explicitly by embedding concrete skill-building into routine care (e.g., shared-to-independent visits, symptom communication, appointment scheduling, and insurance use) and facilitating warm handoffs to adult providers. Adult providers should anticipate uneven preparation and promote engagement through clear communication, predictable visit structure, and acceptance of caregiver involvement as supported autonomy.

HCT supports should extend beyond clinical settings. Schools and community-based transition programs can integrate health-related goals into existing transition planning (e.g., individualized education programs (IEPs) or 504 plans), reinforcing skills across contexts. For autistic AYAs in rural communities, structural barriers warrant targeted systems responses, including telehealth access for adult care and improved Medicaid continuity to expand provider choice. Across settings, coordinated approaches that address both individual skill development and structural constraints may better support autistic AYAs’ engagement and well-being during the transition to adult health care.

Future research should refine and prioritize participant-identified HCT skills to inform targeted interventions and resources. Longitudinal, multi-stakeholder studies are needed to examine how HCT unfolds over time across autistic AYAs, caregivers, and pediatric and adult providers. Participants’ descriptions of emotional distress also highlight the need for HCT models that address emotional and sensory barriers alongside skill development.

Limitations

Several limitations should be considered when interpreting these results. First, although the study aimed to recruit participants who were more representative in terms of rurality, support needs, and race or ethnicity, the sample was drawn from a limited participant pool and limited to those willing to participate in lengthy qualitative interviews. This may reduce the transferability of the findings to autistic AYAs who are less engaged with care, face higher health-related distress, or have greater communication and support needs. While flexible communication methods and assistance from support persons were incorporated into the study design, autistic AYAs with higher support needs remained underrepresented. The small and gender-diverse sample also limited our ability to examine patterns by gender identity, transition status, or other intersecting social positions. Parent presence during four interviews may have shaped what participants chose to share or how experiences were described, although parent support was permitted to support accessibility and participation. Future research should use purposive sampling techniques to better examine intersectional experiences related to race, ethnicity, disability, geography, and transition stage. Finally, the research team’s lived experiences with disability and backgrounds in autism and HCT likely enhanced rapport and sensitivity to systemic barriers but may also have shaped analytic priorities. Reflexive memo writing and collaborative team discussions were used to ensure transparency and rigor during analysis.

Conclusion

This qualitative study examined the HCT experiences of autistic AYAs who are in a critical time of transition to adulthood. Like other transitions, such as education and employment, HCT requires scaffolding for successful skill acquisition and supportive environmental factors to facilitate interdependence. Future work should test SDT-informed, developmentally scaffolded HCT interventions that explicitly address emotional, relational, and structural barriers.

Supplementary Material

Supplemental material for this article is available online.

Data Availability Statement

The raw qualitative transcripts are not publicly available because they may contain identifying information, and participants did not consent to public release. De-identified excerpts may be available from the first author upon reasonable request, with a data use agreement and IRB approval. The interview guide is included in the Supplemental Files; the final codebook is available at https://osf.io/jw5r8. No analysis scripts were generated because the study used reflexive thematic analysis in Dedoose; the codebook and audit trail serve as analytic documentation.