6.4 Evaluating Experiences of Youths With Autism Spectrum Disorder in a Peer Mentorship Program

Abstract

Although support systems exist for children with autism spectrum disorder (ASD), these systems become limited as teens transition into adulthood. To help prepare youths for this transition, the Autism Program at Boston Medical Center created Teens Engaged as Mentors (TEAM), an innovative program that pairs teen mentors (with and without ASD) with younger mentees with ASD for monthly social excursions (eg, volunteering or field trips). This study qualitatively assesses participant experiences in TEAM via focus groups with its participants and their parents. Findings will be used to improve future TEAM operations and contribute to the greater scope of knowledge on services for youths with ASD. In total, 16 mentees (ages 9-18 years), 13 mentors with ASD (ages 14-21 years), 17 mentors without ASD (ages 15-19 years), and 42 parents were interviewed in separate focus groups annually from 2016 to 2020. Transcripts from the interviews were examined by 3 different researchers who coded 7 inductively determined categories of experiences: having fun (ie, enjoying the excursions), community service/engagement, socialization, team dynamics, open-mindedness/acceptance, growth (eg, in social skills), and challenges. Eighty percent interrater reliability was established, and the code frequency of each category was used to assess participant experiences. Across all groups, having fun, socialization, and growth were identified the most. No difference in code frequencies was found between mentors and parents. Mentees, however, had a much higher proportion of “having fun” codes than parents or mentors, whereas parents and mentors discussed “growth” much more often than mentees. Little change was found in code frequencies over the program’s 5-year history. Our results suggest that TEAM primarily provides a fun and socially engaging experience with opportunities for personal growth. Mentees likely mentioned “having fun” more because they are younger and thus more likely to focus on the immediate activity rather than deeper reflections, whereas mentors and parents mentioning “growth” more suggests that they saw visible change in themselves or their children due to TEAM. These findings will help guide the future of TEAM and may provide valuable insight for the development and success of other youth ASD support services.