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

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.

Keywords: adulthood; autism; autonomy; choice; opportunity; qualitative; self-determination; support.

Figure 1.

Themes and subthemes.

Figure 2.

Peter leafing through a magazine.

Figure 3.

Peter and Lamont’s list of things to do in an awesome day.

Figure 4.

Justin (left) and Lily’s vision boards.

Figure 5.

Dax and his creations, ice cream cone and hot dog.

Figure 6.

Brody and researcher co-regulating.