JMIR Res Protoc. 2024 Mar 14;13:e52658. doi: 10.2196/52658.

ABSTRACT

BACKGROUND: In the United States, autistic people face high rates of co-occurring mental illnesses and premature death due to self-harm, which are indicators of threats to mental well-being. Social inclusion may enhance mental well-being and resilience among autistic people. According to Simplican and colleague’s (2015) model of social inclusion for people with intellectual and developmental disabilities, social inclusion is an interaction between community participation and interpersonal relationships. There is limited research on social inclusion that includes the integration of interpersonal relationships and community participation among autistic people 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: The long-term objective of this project is to improve social inclusion factors to support the mental well-being of autistic people. This protocol describes a community-based, mixed methods pilot study 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 community-based, 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 cocreate a definition of meaningful social inclusion and 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. We will examine whether meaningful social inclusion predicts well-being given sociodemographic factors using ordered logistic regression, with well-being categorized as low, medium, and high. 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: Using a community-based, mixed methods approach, we intended to develop a definition of meaningful social inclusion for autistic people and understand the role meaningful social inclusion plays in the well-being of autistic people.

INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/52658.

PMID:38483470 | DOI:10.2196/52658