Navigating healthcare among Canadians with ASD during transitions to adulthood: How does it look like from the perspectives of stakeholders?
Youth with ASD need a one-page health summary, a community program list, and a single point person to survive the jump to adult care.
01Research in Context
What this study did
Ghanouni et al. (2026) asked Canadian teens and adults with ASD, parents, doctors, and community workers how youth move from child to adult healthcare.
The team ran small group chats and one-on-one talks. They coded every quote to spot shared pain points and bright spots.
What they found
Everyone agreed on three must-haves: clear hand-off info, local programs to join, and one main helper who keeps all teams on the same page.
Without these, youth felt lost, missed appointments, and stopped care.
How this fits with other research
Kim et al. (2021) and Hu et al. (2021) show the same gaps inside college disability and counseling offices. Staff know little about autism, so students still hunt for help—just like the youth in Parisa’s study hunt for doctors.
Titlestad et al. (2019) list the exact supports college kids want: mentors, coaches, and easy-to-read plans. These mirror the “structured info” and “coordinated support” Parisa heard about.
McClain et al. (2020) found school psychologists rarely link clinics and schools. Parisa adds the next step: once kids age out, nobody picks up the link role—leaving a vacuum.
Why it matters
You can copy the three must-haves into your transition plan today. Write a one-page health summary for the youth, list two local programs they can join this month, and pick one point person (could be you) who emails the new adult provider before the first visit. These small moves close the gap the whole literature keeps finding.
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02At a glance
03Original abstract
INTRODUCTION: The transition to adulthood presents specific challenges for individuals with autism spectrum disorder (ASD) and their parents, particularly in navigating healthcare systems and adapting routines. Despite the importance of this transition, effectively navigating the healthcare system remains difficult and there is limited information specifically on healthcare navigation. This study aims to address this gap by exploring the experiences of stakeholders to gain a comprehensive understanding and identify crucial components for successfully navigating healthcare systems. METHODS: In-depth interviews were conducted with 20 participants, including 6 youth with ASD, 10 parents of youth with ASD, and 4 service providers from Canadian provinces. The interviews were analyzed thematically to extract meaningful insights. RESULTS: Thematic analysis revealed three main themes essential to navigating the healthcare system: (a) information sharing, emphasizing the significance of accessible and comprehensive information exchange regarding healthcare resources; (b) community-based programs, underscoring the role of community resources and support networks in facilitating healthcare access and transition; and (c) healthcare coordination, highlighting the necessity of tailored and ongoing support mechanisms to assist individuals with ASD during the transition process. CONCLUSION: This study contributes to the existing literature on the transition to adulthood for individuals with ASD by identifying key factors influencing healthcare system navigation. Recognizing and addressing these factors are vital due to their profound impact on youth and their families. The findings highlight the importance of accessing navigational services to facilitate a successful transition of healthcare systems and can inform the development of navigational support interventions. CONTRIBUTION TO THE LITERATURE.
Research in developmental disabilities, 2026 · doi:10.1016/j.ridd.2026.105222