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

Research in Developmental Disabilities
Georgia Pavlopoulou, Dagmara Dimitriou

Abstract

The 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. Semi-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. Interpretative 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'. As experts of their own lived experience, sisters shed light on their day-to-day experiences. The themes derived from their experiences may help to dr...Continue Reading

Citations

Sep 5, 2018·Clinical Child and Family Psychology Review·Carolyn M ShiversCasey M McGregor
Apr 9, 2021·Clinical Child Psychology and Psychiatry·Lucy WatsonChristina J Jones
Jul 12, 2021·Journal of Autism and Developmental Disorders·Shin Ying ChuDeborah Hersh

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