Date of Graduation

8-2024

Document Type

Dissertation

Degree Name

Doctor of Philosophy in Curriculum and Instruction (PhD)

Degree Level

Graduate

Department

Curriculum and Instruction

Advisor/Mentor

Kucharczyk, Suzanne

Committee Member

Nachman, Brett

Second Committee Member

Collins, Kathleen

Keywords

Autism; Community-based participatory research; Determinants; Independent living; Real-time Delphi; Transition

Abstract

The shift from institutional living to community integration for people with disabilities, including autistic people, has been significantly influenced by legislative measures and advocacy. Despite these efforts, autistic youth and adults still experience a unique transition to independent living compared to their peers with other disabilities. Studies have reported that autistic adults are more likely to remain in the family home and less likely to live independently post-high school (Anderson et al., 2014). Existing literature and legislation illustrate a fragmented approach to defining and measuring independent living for autistic adults, often driven by non-autistic perspectives (Cribb et al., 2019). This study, in partnership with an autistic community research partner, aims to fill this gap by incorporating the insights of autistic individuals themselves. This real-time Delphi study was designed to explore the perspectives of a panel of autistic experts on the definition of independent living by addressing elements that promote, discourage, or are neutral in determining independent living. The study was structured into two rounds, gathering both qualitative and quantitative data. Ordinal data analysis was used to establish consensus among panelists, complemented by thematic analysis of qualitative responses. Initial qualitative data analysis informed the development of the survey used in the second round, ensuring relevance and depth in capturing the panelists' perspectives. The panel was unified in their philosophical stances, as they advocated for the right of autistic people to live according to their own preferences, including whom they live with and where, on equal terms with others. They stressed the importance of honoring personal choices, even when they diverge from societal norms or medical advice, as essential to promoting dignity and self-determination. The findings suggested that independent living for autistic people relies heavily on tailored supports and respect for their autonomy and rights. The panel consistently refocused statements from a skill acquisition perspective to an access and support needs perspective, as they said this is the real need to live independently. The study examined non-determinants of independent living for autistic adults, revealing that factors such as location of residence, level of support needs, and skill acquisition do not reliably indicate successful independent living. Instead, autonomy and the ability to exert control over daily decisions emerged as crucial indicators of successful independent living. Panelists emphasized that self-reliance and financial independence, while beneficial, are not definitive markers of independent living status. The study's findings underscored the necessity of understanding independent living from the autistic perspective, moving beyond conventional norms, and emphasizing autonomy and self-determination. This research contributed to a more nuanced understanding of independent living, providing a foundation for future studies and policies that better support autistic individuals in achieving genuine autonomy and inclusion.

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