Being able to be myself: Understanding autonomy and autonomy-support from the perspectives of autistic adults with intellectual disabilities

Abstract

Self-determination enhances a person’s quality of life and is a fundamental human right. According to self-determination theory, autonomy is one of three basic psychological needs that must be met to experience self-determination. The overarching aim of this exploratory study was to learn about autonomy from the perspective of autistic adults with intellectual disability, including what autonomy meant and how participants wanted to be supported to be autonomous. Participants ( n = 8; median age = 24) engaged in a variety of participatory methods (e.g. discussions, arts and crafts, games) during weekly sessions. These sessions took place over 7–16 weeks and were each informed by a guiding question related to autonomy. Artifacts, video or audio recordings from each session, and reflexive journals were thematically analyzed. The results support an overarching meaning of autonomy as being able to be themselves. Participants identified (1) choice and control, (2) communicating their way, and (3) safe environments as important and showed us how they wanted to be supported in each of these three areas. We also identified having autistic facilitators as an overarching strategy. These results provide a foundation for implementing change to enhance autonomy for autistic adults with intellectual disabilities. Lay Abstract Autistic young adults with intellectual disabilities want to be autonomous but are less autonomous than other people. However, they can be autonomous with appropriate support. We wanted to learn how we can support autistic adults with intellectual disabilities to be more autonomous. We designed our study with help from five autistic community partners to make sure the research was relevant to autistic people and would improve their lives. We talked with eight autistic young adults with intellectual disabilities about autonomy. We defined “talk” as verbal language, as well as non-verbal cues such as body language, facial expressions, vocalizations, and laughter. We did art projects and played games while we talked. We met in small groups over multiple sessions. Our participants told us that being autonomous meant being able to be themselves. They told us three main ways to support their autonomy: (1) having choice and control, (2) being able to communicate in their own way, and (3) being in a safe environment. Families, support staff, and caregivers can use this information to help autistic young adults with intellectual disabilities to be autonomous.