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Self-determination in Minoritized Autistic Adolescents and Adults

Teresa Girolamo, Marissa Birmingham, Karina Patel,Samantha Ghali,Iván Campos, Kyle Greene-Pendelton,Rebecca Canale,Caroline Larson,Audra Sterling, Karrie A Shogren

medRxiv (Cold Spring Harbor Laboratory)(2024)

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Abstract
Self-determination plays an important role in outcomes in autism and shows intersectional disparities. Yet, little is known about the role of individual differences or social drivers of health in the development of self-determination. Understanding these factors is key for developing effective supports. This mixed-methods convergent study examined self-determination in racially and ethnically minoritized autistic individuals and caregivers. Participants ages 13 to 30 (N = 73) varying widely in language and cognitive ability and caregivers (n =52) completed the Self-Determination Inventory. Autism traits and sense of community predicted caregiver report of self-determination, and autism traits and language predicted self-report of self-determination, consistent with DisCrit and Diversity Science. Self-Determination Inventory interviews of a subset of participants (n = 13) and caregivers (n = 9) were analyzed using inductive thematic analysis. Themes pointed to the role of the intersection of race and disability in shaping self-determination. Altogether, findings point to the importance of these frameworks, environmental influences, and multi-informant perspectives in characterizing self-determination. Future work should focus on the impact of environmental factors in self-determination in minoritized autistic individuals during the transition to adulthood.
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