Living with a sibling who is on the autism spectrum : the siblings’ perspective

Abstract

This study explores sibling relationships in families where one sibling is on the autism spectrum, focusing on the lived experiences of neurotypical siblings. The researcher’s interest in the field of inclusion is deeply rooted in personal experience, having grown up with a younger, non-verbal brother diagnosed with autism. The challenges of communicating with and caring for a sibling with autism fostered a sense of responsibility in the researcher, shaping their personal development and understanding of family dynamics. Observing the care provided to their brother during school hours contributed to the researcher’s growth and motivated an exploration of sibling roles within families affected by autism. As siblings and their autistic counterparts grow older, concerns about the future, particularly regarding caregiving responsibilities, become prominent. Research indicates that siblings often assume primary caregiving roles once parental support is no longer available (Hinek & Milaković, 2019). Sibling relationships are frequently among the longest-lasting and most significant relationships for individuals with autism, often serving as a foundation for social behaviours (Mandleco & Webb, 2015). Although numerous studies have examined the perspectives of parents raising children with autism spectrum disorder (ASD), there is limited research on the experiences and perspectives of siblings. This study seeks to address that gap by interviewing neurotypical siblings to gain insight into how growing up with a sibling with autism has shaped their lives. By shedding light on the emotional, social, and developmental impacts of these relationships, the research aims to contribute to a greater understanding of the unique challenges and opportunities faced by siblings of individuals with autism.