Putting the pieces together: an adult perspective on growing up with a sibling with autism spectrum disorder

Abstract

Sibling relationships are one of the longest relationships of an individual’s life and a prominent means of encouragement, camaraderie, and influence on one’s development throughout one’s lifespan, yet there are various aspects that may alter the sibling relationality, such as autism spectrum disorder. This qualitative research study set out to explore the lived experiences of adult individuals who grew up with a sibling on the autism spectrum. Adult voices have long been negated in such discourse, with an over reliance on parental, child, and adolescent voices. Whilst these narratives have made prominent strides in elucidating the sibling relationship with a sibling on the spectrum, little is known about the adult sibling relationship and an adult perspective on the sibling relationship across siblinghood. Thus, through exploring retrospective and current experiences of siblinghood, this study sought to garner insight into how eight adults perceive, think, feel, and reportedly experience their relationship with their sibling on the spectrum, in their own words. In doing so, the study aimed to gain an experiential understanding of adult individuals’ meaning making and intrapsychic resonances. The data underwent an interpretive phenomenological analysis, an approach that views participants as experts and emphasises their agency within the creation and meaning making of their experiences. This method enabled rich and insightful understandings of the lived experiences of adult siblings with their siblings on the autism spectrum. The findings suggest a sibling relationship characterised by an ebb and flow relationality of a nuanced and dynamic sibling dyad across siblinghood, challenging reported rigid, absolute, and hypothesised notions of siblinghood as it evolves throughout the lifespan. Subsequently, recommendations for clinical practice and future research are addressed.