Girolamo Teresa, Birmingham Marissa, Patel Karina, Ghali Samantha, Campos Iván, Greene-Pendelton Kyle, Canale Rebecca, Larson Caroline, Sterling Audra, Shogren Karrie A
medRxiv. 2024 May 3:2024.05.02.24306799. doi: 10.1101/2024.05.02.24306799.
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 ( = 73) varying widely in language and cognitive ability and caregivers ( =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 ( = 13) and caregivers ( = 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.
自我决定在自闭症的结果中起着重要作用，并呈现出交叉性差异。然而，关于个体差异或健康的社会驱动因素在自我决定发展中的作用，我们知之甚少。了解这些因素是制定有效支持措施的关键。这项混合方法的收敛性研究考察了种族和族裔少数群体的自闭症患者及其照顾者的自我决定情况。年龄在13至30岁之间（n = 73）、语言和认知能力差异很大的参与者以及照顾者（n = 52）完成了自我决定量表。自闭症特征和社区感预测了照顾者对自我决定的报告，而自闭症特征和语言预测了自我对自我决定的报告，这与歧视批判和多样性科学一致。使用归纳主题分析法对一部分参与者（n = 13）和照顾者（n = 9）的自我决定量表访谈进行了分析。主题指出了种族和残疾的交叉在塑造自我决定方面的作用。总之，研究结果表明这些框架、环境影响和多信息提供者视角在描述自我决定方面的重要性。未来的工作应关注环境因素对少数群体自闭症患者在向成年过渡期间自我决定的影响。
