Living in the shadow of autism: the lived experience of having a sibling with autism

Abstract

OBJECTIVE: This study was conducted to illuminate lived experiences of individuals having a sibling with autism. METHODS: This qualitative case study was conducted to explore the lived experiences of a 20-year-old girl living with a 17-year-old brother with autism. Data was collected through interactive, semi-structured interviews. Two 60-minute interactive interview sessions were conducted, recorded and transcribed. Rigor in the study was ensured through prolonged engagement and researcher familiarity with the data. Feedback from the participant and nursing faculty members was sought for revisions. Data was analyzed following Van Manen's six-step phenomenological approach. OneNote 2016 software was utilized to record, organize, and extract interview data and codes. RESULTS: The data analysis resulted in the identification of three main themes: "hiding autism," "I never had a childhood", and "motherly sister". These themes were further divided into seven sub-themes, including "withdrawing from friends", "anguish over non-normative behaviors", "avoiding others' questions", "you have to take care of him", "struggling with academics," "an embrace full of positive energy," and "never leaving him alone". CONCLUSION: This study highlights the complex experiences of siblings living with a sibling diagnosed with autism, revealing both challenges and moments of resilience and love. The findings emphasize the importance of tailored support and increased awareness for promoting the well-being of siblings in similar situations. However, its single-participant limitation calls for broader, diverse studies to understand these experiences across various cultural, economic, and social contexts.

Keywords

• autism spectrum disorder
• autistic disorder
• lived experience
• phenomenology