Toward Increased Self-Determination of Autistic Individuals: Perspectives of Autistic Adults

Note about language: Consistent with the preference of autistic individuals, this abstract is written with identity-first language.

Background: Self-determination enhances quality of life. It is a fundamental human right, regardless of disability, as confirmed in the 2006 United Nations’ Convention on the Rights of Persons with Disabilities, ratified by Canada in 2011. However, autistic individuals have lower levels of self-determination than their non-autistic peers, including peers with other developmental disabilities.

Objectives: What can be learned from independent autistic adults that would enhance autism service provider practices to support self-determination of autistic individuals?

Methods: A research advisory team was formed that included the Executive Team of a large community autism service provider and an autistic individual. Six interviews with independent autistic adults were conducted using an interview guide co-created by the autistic member of the advisory team and the researcher. Interviews took place in person (n=5) or over Skype (n=1). Interview questions addressed participants’ interpretations of and experiences with self-determination, as well as potential strategies to improve self-determination. Interviews were audio-recorded and transcribed verbatim. The researcher generated initial codes and potential themes, guided by Braun and Clarke’s six stage approach to thematic analysis. These themes were then reviewed and refined with the assistance of the Executive Team members of the research advisory team. A neurodiversity lens was employed throughout the process. This lens positions autistic individuals as equal citizens while recognizing that some individuals will require supports to enact their citizenship. As such, all data was considered equally valid and important, even if it did not align with the researcher’s interpretation of self-determination.

Results: Participants included four men and two women. One participant lived on her own, one participant lived with his mother, three participants lived with their spouses and/or children, and one, a university student, lived with roommates. All participants used verbal language to communicate. Two overarching themes emerged: (1) individual factors related to self-determination, and (2) systemic factors related to self-determination. Within each theme, data were organized related to enablers of, barriers to, and strategies to improve self-determination. Strategies to support individuals primarily related to teaching skills (e.g., communication, stress management, social skills) and working from an individual’s interests and strengths. Strategies to support systemic change primarily focused on self-advocacy and broad autism education.

Conclusions: Self-determination is complex and achieved via multiple means and strategies. Independent autistic adults all reinforced the importance of including autistic voices in all that affects them. Strategies to directly engage autistic individuals in service decisions and planning at autism service providers could enhance their self-determination and ensure targeted outcomes are relevant. The creation of Advisory Committees of Self-Advocates within autism service providers could help ensure their programs and services support self-determination.