Experiencing Independence: Perspectives from Autistic Adults.

Abstract

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.