JMIR Publications

ABSTRACT

Background:

In the United States autistic people face high rates of co-occurring mental illnesses and premature death due to self-harm. Social inclusion may enhance mental well-being and resilience among autistic people. There is limited research on social inclusion as integration of interpersonal relationships and community participation or the impact of social inclusion on the well-being of autistic people. Additionally, little evidence exists regarding how autistic people prefer to be included in the community or form interpersonal relationships.

Objective:

This protocol describes a project to develop a definition of meaningful social inclusion for autistic people, and to understand the relationship between meaningful social inclusion and mental well-being among autistic adolescents and emerging adults.

Methods:

The project uses a sequential mixed methods design with a formative phase (Phase 1) that informs a survey phase (Phase 2) and concludes with a process evaluation of the community engagement process (Phase 3). During Phase 1 we will recruit 10 community partners (autistic adults and stakeholders) and conduct sharing sessions to co-create a survey of meaningful social inclusion and well-being. During Phase 2 we will recruit 200 participants (100 autistic adolescents and emerging adults and 100 caregivers) to complete the survey. During Phase 3 the community partners from Phase 1 will complete a survey on their experiences with the project.

Results:

Ethics approval was obtained for this project in March 2023. We have recruited community partners and started the Phase 1 focus groups as of September 2023. Phase 2 and Phase 3 have not yet started. We expect to complete this study by March 2025.

Conclusions:

This project has practical relevance and could result in concrete recommendations to facilitate meaningful social inclusion aligned with the lived experiences of autistic people, which can improve the quality of life of autistic adolescents and emerging adults.