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Exploring Parent and Autistic Youth Perspectives to Inform Adaptations for an Advocacy Program
Meghan M Burke1, Amanda N Johnston1, Saury Ramos-Torres1,2
1Department of Special Education, Vanderbilt University, Nashville, TN USA.
Journal of Developmental and Physical Disabilities
|November 17, 2025
Summary
Autistic youth and parents need better ways to access adult disability services. Feedback suggests parents prefer navigator programs, while youth desire video-based learning about adult life and services.
Area of Science:
- Developmental Psychology
- Disability Studies
- Health Services Research
Background:
- Autistic youth and their parents face significant barriers accessing adult disability services.
- Transitioning to adulthood requires specialized support and navigation of complex service systems.
- Current interventions may not adequately address the needs of autistic individuals and their families during this transition.
Purpose of the Study:
- To gather feedback from autistic youth and their parents to improve an advocacy program.
- To inform the development of interventions that facilitate access to adult services for autistic individuals.
- To understand the preferences of autistic youth and parents regarding support for accessing adult services.
Main Methods:
- Individual interviews were conducted with 128 parents of transition-aged autistic youth.
- Individual interviews were conducted with 78 autistic youth.
- Data from interviews were used to adapt an existing advocacy program.
Main Results:
- Parents expressed a preference for one-on-one navigator programs over group-based support.
- Parents raised concerns regarding the qualifications and quality of potential navigators.
- Autistic youth indicated a desire to learn about various adult life topics, including different types of adult services.
- Youth overwhelmingly preferred video-based resources for learning about adult services.
Conclusions:
- Interventions should consider parent preferences for personalized navigation support.
- Addressing parental concerns about navigator quality is crucial for program success.
- Developing accessible, youth-friendly resources, such as videos, is essential for improving service access.
- Future research and practice should focus on co-designing transition services with autistic youth and their families.
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