4 - (SYM 128) Engaging with the Autism Community to Develop a Novel Motivational Interviewing Intervention for Daily Living Skills in Transition-age Autistic Youth

Background: Community engagement in autism research encourages closer alignment with autistic peoples’ priorities and fosters novel and impactful programs of research. This project outlines the integral process of community engagement, including: 1) meeting with community members to identify clinical research priorities, 2) developing a novel intervention to meet identified needs, and 3) collecting consistent feedback to promote neurodiversity affirming practices. 

Methods:  Community engagement was a critical aspect of developing an innovative clinical intervention for transition-age autistic youth at the Children’s Hospital of Philadelphia. First, we hosted meetings to establish community priorities related to the transition to adulthood for autistic youth. 30 meeting members with diverse identities (autistic adults, caregivers, providers, community orgs) completed a modified Delphi procedure to identify top clinical research topics. Based on the identified priorities, we developed a new clinical intervention to address community goals. Before piloting the intervention, we conducted semi-structured interviews with 9 community consultants to solicit feedback.

Results: 88% of our priority setting meeting members endorsed the meetings as productive and worthwhile, and 94% endorsed our voting process as fair and accessible. Meeting members voted improving mental health and independent living skills as the top priorities. In line with these priorities, we developed a 5-session intervention inspired by motivational interviewing to enhance autistic young adults’ drive for completing desired daily living skills. After writing the intervention manual, community consultants provided feedback. They appreciated the treatment’s emphasis on autistic young adults’ autonomy to select goals and explore how these goals align with their values. Our team integrated feedback into the manual, such as including autistic young adults in conversations with self-identified caregivers, addressing how sensory and executive functioning challenges may intersect with motivations and abilities to achieve goals, and clarifying ambiguous language.

Conclusion: Our clinical research has benefitted greatly through community engagement efforts across multiple stages of project development. Challenges of ongoing community engagement include longer project timelines and obtaining funding to compensate community members for their time and expertise; however, we find that the advantages of such engagement are well-worth the efforts.