‘I don't live with autism; I live with my sister’. Sisters’ accounts on growing up with their preverbal autistic siblings

Abstract

BackgroundThe experiences of siblings in early adolescent years who grow up with an autistic brother or sister have received very little research interest, especially in terms of sisters’ experiences. Hence our understanding of wellbeing opportunities and challenges in siblings’ everyday life is inadequate and not reflected in the current clinical practices. MethodsSemi-structured interviews utilising an active, non-judgemental and curious stance to explore how sisters make sense of their everyday experiences (inspired by the notion of mentalizing) were conducted to capture important experiences of nine typically developing female siblings. ResultsInterpretative Phenomenological Analysis (IPA) was employed. The master themes included: (i) sisters’ interactions with their siblings- ‘I don’t live with autism, I live with my sister’ (ii) sisters’ interactions with their parents- ‘Always there for us, but often asking too much’, (iii) practical struggles of caring- ‘Like a lonely fighter, tired but always on duty’, (iv) perceived sisters’ needs- ‘I care about my brother and I want society to care about us’. DiscussionAs experts of their own lived experience, sisters shed light on their day-to-day experiences. The themes derived from their experiences may help to draw attention to an appreciation of everyday life including planning for the parts that remain a struggle. This latter point is discussed in terms of implications and adoption of an existential view of wellbeing for future research and practice.