Bhattacharya Piyali, Matthews Rose J, Field Rae, Heath Hannah, Woodcock Kate A, Surtees Andrew D R
School of Psychology, University of Birmingham, Birmingham, UK.
Independent Researcher, Durham, UK.
J Autism Dev Disord. 2025 Apr 3. doi: 10.1007/s10803-025-06812-0.
Autism diagnostic criteria relate to difficulties in functioning across multiple developmental domains, that often impact on a person's independence. There are different ways to conceptualise and exercise independence, but no previous studies have questioned how autistic adults do so. This qualitative study aimed to understand how autistic adults define and experience independence. It was designed to further our understanding of how autistic adults account for and use coping strategies to overcome barriers to independent living and navigate their way to their desired level of independence. Twelve semi-structured interviews were conducted with autistic adults living in the United Kingdom. The data were analysed using reflexive thematic analysis. The researchers generated three major themes. The first theme 'Independence is "not a one-size-fits-all"' highlights that there is no one definition or concept of independence for autistic people; these are relative and uniquely individual. The second theme '"Being autistic has its setbacks" in a neurotypical world' describes the obstacles encountered by autistic adults seeking independence within a society that favours neurotypical norms. The third theme 'Finding ways of making it work' captures strategies autistic adults use in achieving or maintaining independence. The findings from this study provide a foundation for future research exploring domains of independence for autistic adults. The perceived desirability of achieving different degrees of in(ter)dependence and the fluctuating nature of self-sufficiency are explored through lived experience. Increasing understanding of barriers and challenges to independence has the potential to empower autistic adults and improve services and support.
自闭症诊断标准涉及多个发育领域的功能障碍，这些障碍常常影响一个人的独立性。对于独立性的概念化和实践有不同的方式，但此前没有研究探讨过成年自闭症患者是如何做到这一点的。这项定性研究旨在了解成年自闭症患者如何定义和体验独立性。其目的是进一步加深我们对成年自闭症患者如何解释和运用应对策略来克服独立生活障碍并朝着他们期望的独立水平前进的理解。对居住在英国的成年自闭症患者进行了12次半结构化访谈。使用反思性主题分析法对数据进行了分析。研究人员得出了三个主要主题。第一个主题“独立性并非‘一刀切’”强调，对于自闭症患者来说，不存在单一的独立性定义或概念；这些都是相对的且因人而异。第二个主题“在一个以神经典型者为规范的世界里，‘身为自闭症患者有其挫折’”描述了成年自闭症患者在一个青睐神经典型规范的社会中寻求独立时所遇到的障碍。第三个主题“找到使其可行的方法”体现了成年自闭症患者在实现或维持独立过程中所使用的策略。这项研究的结果为未来探索成年自闭症患者独立性领域的研究奠定了基础。通过实际生活经历，探讨了实现不同程度的相互依存的可取性以及自给自足的波动性质。对独立性障碍和挑战的更多理解有可能增强成年自闭症患者的权能，并改善服务与支持。
