Nancy Cheak-Zamora

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 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.

Background: Autistic young adults’ preparation for and experiences of transitioning to adult healthcare services is understudied. This transition period is important for Autistic young adults as many have chronic physical and mental health conditions that require regular healthcare utilization. Aims: This study aimed to examine the experiences of autistic young adults as they transition into the adult healthcare system. Methods and Procedures: Participants were recruited through social media, word of mouth and advertisements in autism specialty clinics. Autistic young adults ( n = 14) completed surveys and individual interviews, via Zoom, about health‐related transition skills and experiences. Three researchers used thematic analysis to Bertucci Outcomes and Results: Participants rated all Health‐related independence topics as important to the transition process, with knowledge about physical and mental conditions and safety as most important. Qualitative findings centred around what supports helped and hindered autistic young adults from becoming more independent. They used electronic reminders, observation, or training to learn living skills. Barriers included reliance on caregivers and a sense of being unable to achieve independence. Conclusions and Implications: Autistic young adults reported having some strategies but facing many challenges in achieving independence, related to healthcare needs. Participants described barriers related to making medical appointments, taking medications on their own and talking about their ASD and other medical conditions. Interventions and assessments should incorporate their experiences and needs. Key Points: Autistic young adult participants described the need for memory aids and reminders as an important part of being an adult. Many participants reported learning independent‐related skills by observing or mirroring others, asking a support person for guidance, or searching out information often on the internet. Participants discussed feeling unable to be independent. Many participants were not sure what was holding them back, or they felt like they didn't have the communication skills needed to do independent tasks themselves. WHAT THIS PAPER ADDS: What is already known on this subject Autistic experiences of the move from paediatric to adult‐centred care is understudied. Most research in this area is based on general surveys or parent reports. What this study adds to the existing knowledge By giving Autistic Young Adults a voice in describing their transition experiences and needs, this paper increases the knowledge base in this understudied area. Autistic young adults described the need for memory aids and reminders. Participants discussed feeling unable to be independent. Many participants were not sure what was holding them back, or they felt like they didn't have the communication skills needed to do independent tasks themselves. What are the potential or actual clinical implications of this study? Clinicians should build additional tools and supports that correspond with Autistic young adults' strengths and ways of learning, like electronic tools, discrete trial training and including caregivers in training when needed. Clinicians should purposefully utilize caregivers in interventions with decreasing reliance on their assistance and involvement over time. Strengthening Autistic young adults' belief that they can be more independent may be as important as teaching independence‐related skills.

Background: Autistic adults describe difficulties accessing high‐quality primary care services. Primary care practitioners (PCPs) report a lack of confidence and knowledge in working with autistic adults. The Extension for Community Healthcare Outcomes (ECHO) model is a longitudinal clinician education program that utilises a ‘hub and spoke’ model, community‐building strategies and peer case‐based learning to improve the care of patients with medical complexity. Methods: The present study utilised the ECHO model (‘ECHO Autism Adult Healthcare’) to train PCPs in how to best care for autistic adults. We used a qualitative approach to examine the PCPs' subjective experiences of participating in the training. We used a qualitative descriptive framework to explore the experiences of 22 PCPs who completed the ECHO Autism Adult Healthcare program. Semi‐structured Zoom interviews examined the support and education needs of PCPs and the benefits and challenges of the program. Three researchers worked collaboratively to code transcripts, testing inter‐rater reliability to establish reliability and coding consistency. Results: Four themes were identified: (1) the benefits of hearing from a wide range of perspectives, (2) establishing and supporting an interactive and engaging climate, (3) building a sense of community and (4) the meaningfulness and usability of resources and information. Overall, participants appreciated the multidisciplinary hub team members' expertise, especially those with lived experiences. Several participants enjoyed the ECHO format, as it encourages active discussion and engagement. PCPs indicated that they felt connected with the hub team and participants. They remarked on the usefulness of provided resources and their ability to implement them into clinical care. Conclusion: These results can guide the development and implementation of future training programs. The ECHO model has the potential to become a best practice for delivering medical education. Broad implementation of the ECHO model shows significant benefits for PCPs and patients with medical complexity compared to more traditional forms of CME.

Despite strides in reducing postsecondary enrollment disparities between students with and without disabilities, the transition to postsecondary education remains particularly challenging for students with autism spectrum disorder (ASD). These students encounter unique barriers that necessitate tailored support during the college application process. Advances in artificial intelligence (AI), particularly personalized assistance, offer promising opportunities for enhancing inclusivity in educational counseling. This study explored the application of AI to assist autistic students in navigating the complexities of the college admissions process by examining ADVi, an AI chatbot that communicates through text messages to provide information, suggest actionable steps, and answer college admission-related inquiries. We used a multilevel negative binomial regression model to examine whether autistic students showed a distinct need for AI-based assistance during their transition to higher education. This analysis was based on data from 115,354 college-aspiring students who graduated from public high schools in Texas in 2021, of whom 807 identified as having ASD. Autistic students utilized ADVi significantly more than their typically developing peers, particularly among those with lower prior test achievement (a composite measure based on five state-mandated tests administered during high school). In the bottom tertile of prior test achievement, autistic students sent 132.2% more messages than their peers; the difference was 78.5% in the middle tertile and 36.2% in the top tertile. These results highlight the increased utilization of ADVi by autistic students and suggest a potential need for additional AI tools to facilitate smoother educational transitions for students requiring specialized assistance.

Autistic adults face significant barriers to employment. While caregiver and provider perspectives have informed transition programming to address these barriers, limited research has gathered insights directly from autistic adults. This study aimed to explore the experiences of autistic adults who completed an employment preparation program to identify the unmet needs and evaluate the impact on employment outcomes. Semi-structured interviews were conducted with 16 autistic adults and consisted of 26 core questions, allowing for an exploratory line of questioning. This method was chosen to address the gap in the literature regarding autistic adults' direct experiences and needs. The interviews were analyzed using inductive thematic analysis, prioritizing participants' words and experiences revealing novel insights into transition services. Demographic information and closed-ended questions were analyzed using descriptive statistics. Participants expressed overall satisfaction with the programs, and most were currently employed, attributing their job obtainment to the transition program. Thematic analysis revealed four primary themes: (1) Job Skills; (2) Job Experience and Coaching; (3) Peer Relationships; and (4) Goal Setting. Participants reported benefits such as improved job obtainment skills, on-the-job experience, peer socialization, and practice setting goals. However, challenges were identified, including difficulties in maintaining relationships with peers and concerns about excessive involvement by job coaches. The findings highlight the benefits and limitations of employment preparation programs for autistic adults. The insights gained can inform the development of future programs and the training of personnel aiming to enhance the effectiveness of services for autistic adults seeking employment.

Autistic adults experience significant unmet healthcare needs, with opportunities for improvement in both the systems and the practitioners who serve this population. Primary care physicians/practitioners (PCPs) are a natural choice to provide comprehensive care to autistic adults but often lack experience in serving this population. This pilot study developed and tested an Extension for Community Healthcare Outcomes (ECHO) Autism model adapted from our previous work, focused specifically on training PCPs in best‐practice care for autistic adults. The project was informed directly by the perspectives and preferences of autistic adults, caregivers, and PCPs. Two consecutive cohorts of PCPs participated in ECHO Autism Adult Healthcare sessions. Each cohort met 1 h twice a month for 6 months, with 37 PCPs (n = 20 in Cohort 1, and n = 17 in Cohort 2) participating. Based on findings from the first cohort, adjustments were made to refine the session preparation, curriculum, conduct of the ECHO, resources, and evaluation. After participation in the ECHO Autism program, PCP self‐efficacy and satisfaction improved, while the number of perceived barriers did not change. Knowledge did not improve significantly in Cohort 1, but after adjustments to the training model, participants in Cohort 2 showed significant knowledge gains. While attention to systems of care is critical to addressing barriers in healthcare in the autistic population, the ECHO Autism Adult Healthcare model is feasible and holds promise for improving PCP satisfaction and self‐efficacy in working with autistic adults.

Background: Autistic adults have high rates of co-occurring health conditions, suicide, and premature mortality, yet often experience health care barriers and poor health outcomes. A better understanding of the health care needs and experiences of autistic adults is essential for improving the health care system and patient experience. Methods: This study examined the perspectives of autistic adults regarding their health care experiences in primary care and other settings and their suggestions for improvement using both qualitative and quantitative methods. Twenty autistic adults (aged 18–35 years, 65% male) completed surveys and individual semi-structured interviews. Results: Qualitative data analysis results revealed 10 subthemes across 3 overarching themes: (1) system- and clinic-level factors affect access to care, (2) aspects of the clinic environment affect health care experiences, and (3) provider knowledge and practices affect health care experiences. Within the first theme, participants described barriers to obtaining services, including scheduling logistics, costs and inadequate insurance coverage, and transportation barriers. The second theme focused on aspects of the clinic environment that participants found especially relevant to their health care experiences and that required specific accommodations. This included sensory input, anxiety-provoking situations and procedures, and wait time. Within the third theme, participants emphasized aspects of providers' care that affected their health care experiences. Key factors included provider knowledge about autism, communication, rapport, and individualized care and patient–provider partnerships. Conclusion: Overall, the findings point to a need for provider training and improvements to the health care delivery system to better meet the unique needs of autistic adults. Community brief Why is this an important issue? Receiving good health care is important for health and well-being. Understanding autistic adults' perspectives on their health care experiences will help identify ways that health care services can be improved to better meet their needs and preferences in the future. What was the purpose of this study? The purpose of this study was to learn from autistic adults about their health care needs, experiences, and suggestions for improvement. What did the researchers do? The researchers asked autistic adults in the United States to complete a survey and participate in an interview over Zoom. The survey and interview questions asked about their experiences receiving health care services and suggestions for how to improve health care services for autistic adults. What were the results of the study? Twenty autistic adults between the ages of 18 and 35 years participated in this study. Most participants were men (65%) and most were White (75%). The participants shared many important insights about their primary health care experiences and experiences in other health care settings. The results fell into main “themes” or ideas that people had in common. These themes are not listed in any particular order. Autistic adults described many factors that make it hard to access to care, such as getting an appointment, finding transportation, or paying for health care. They explained that the clinic environment needs to be better suited to their needs, such as having a quiet place to wait or sensory accommodations. Participants wanted their doctors to know more about autism and to be able to connect and communicate with them. They also wanted their doctors to partner with them to make sure their health care treatment plan is acceptable and understandable. What do these findings add to what was already known? These findings show that autistic adults in the United States face many barriers in receiving health care. Some recommendations for improvement may be helpful for all patients, such as being able to book appointments online or having a doctor who does not rush you. Other improvements need to be tailored to the unique needs of autistic patients, such sensory accommodations or autism training for doctors and clinic staff. What are potential weaknesses in the study? Because the study was small and only included adults who were able to share about their experiences during an interview, these results may not apply to all autistic adults. Another limitation is that the study was designed and carried out by non-autistic (allistic) researchers, who have different perspectives from autistic people. We asked participants to help us interpret our findings to help address this limitation. How will these findings help autistic adults in the future? The insights from this study provide a lot of recommendations about how health care services can be improved to better meet the needs and preferences of autistic adults in the future.

Introduction: Half a million autistic youth will enter adulthood over the next decade. Support services to help youth successfully transition into adulthood are limited and not tailored to the autistic youth and young adult's needs. This study utilized qualitative methods to understand how autistic young adults experience and cope with stress during the transition to adulthood. Methods: The study recruited 15 autistic young adults aged 18–25 years. Each participant completed a short demographic survey and individual interview. Interviews were conducted online via Google Docs or in-person based on the participants' preference. Three researchers organized and coded the data using a thematic approach. Results: Based on our analysis, three themes emerged. Within the first theme, young adults in this study described experiencing a great deal of stress and provided examples of how it manifested in physical and emotional ways. In the second theme, youth described that the causes of this stress stemmed from general problems handling new or multiple responsibilities and specific problems in school, work, financial responsibilities, and social relationships. Finally, young adults described using various coping mechanisms including relaxation techniques, use of technology, and friends and family social support. Conclusions: The study findings can help service providers and family members find new ways to help autistic young adults manage their stress. This study provides a unique understanding of stress and coping from the autistic individuals' point of view. Stress is most often derived from managing new responsibilities in general and school, work, money, and relationships in particular. Tailored support services that follow the individual from adolescence through adulthood are needed to manage these stressors. Researchers and service providers can utilize these recommendations for future program development. Furthermore, the method used in this study can be replicated to facilitate autistic individual input on future program development. Community brief Why is this an important issue? Few studies have examined what autistic young adults go through as they move from childhood to adulthood. Moving from high school to more adult duties is stressful for all young adults. It is unclear how autistic young adults deal with these changes. What was the purpose of this study? We wanted to better understand the experiences, stressors, supports, and coping styles of autistic young adults as they move from childhood to adulthood. What did the researchers do? We asked autistic young adults to describe their experiences, stressors, and how they cope as they age from teen years to adulthood. Fifteen autistic young adults were interviewed through Google Document or in-person interviews. To analyze the data, three researchers read each interview to find ideas and experiences those young adults shared. The researchers met many times to discuss the shared ideas and experiences they found. Researchers discussed these ideas until they agreed on what the main shared ideas (or themes) were. Two researchers then reread all the interviews to match ideas with the interview quote. What were the results of the study? Researchers found three ideas (or themes) that all or most autistic young adults talked about. (1) Young adults said that they felt stress in physical and emotional ways. (2) Dealing with new responsibilities, many responsibilities, and relationship problems were their main causes of stress. (3) Autistic young adults said that they had different ways of dealing with their stress. Some young adults used meditation and others played games on their computers or phones or looked at pictures to deal with stress. Many young adults also said that they get help from family and friends when they are stressed out. What do these findings add to what was already known? These findings help us better understand what stressors autistic young adults had and how they deal with this stress. Most studies ask caregivers questions about their young adults. Learning about stressors and ways to deal with stress using the young adult's own words is an addition to what we previously knew or what was published. Furthermore, the use of Google Doc discussions to collect data is new and was a good method of data collection. What are potential weaknesses in the study? We only had 15 autistic young adults agree to be in the study, and most were white and male. Young adults with severe communication limits were not able to be in the study. How will these findings help autistic adults now or in the future? We know more about the ways autistic young adults feel stress and anxiety and how they deal with it. This information can help service workers give autistic young adults the support they need. The findings from this study can inform new interventions and can help health care workers, support service workers, and family members help autistic young adults deal with their stress and provide more ways to deal with their life stress.