The Sibling Experience: Exploring the Experiences of Siblings With Autism Spectrum Disorder

Abstract

Using an interpretative phenomenological qualitative design, this research aimed to highlight lived experiences of neurotypical siblings focused on their relationship with their sibling who has autism spectrum disorder. Participants included nine neurotypical adults who had a biological sibling with autism who was within 4 years of their age and had resided in the same home for 7 years. Participants were interviewed to explore how they experienced their current relationship with their sibling with autism and how their relationship changed from childhood to adulthood. Interviews were transcribed alongside field notes and were analyzed using a three-cycle coding method to identify themes within data. Participant responses were categorized into four themes including bonding, caretaker roles, relationship changes, and empathy for people with difference. Participants noted intentionality in creating relationships with their siblings with autism. When intentionality was absent, relationships were reported to be more distant. Participants described providing various roles within sibling relationships including that of a protector, supporter of communication, and many siblings noted a plan to provide ongoing care for siblings who required support. Participants expressed feeling they gained a sense of empathy for people with differences. Results indicated a need for advocacy for people with differences, specifically, advocacy for understanding autism and the importance for connection within sibling relationships.