How My Life Is Different: Sibling Perspectives of ASD

Background: The impact of autism spectrum disorder (ASD) on the family is a growing area of research interest. Studies have primarily focused on family impact from a parental perspective, with much less emphasis on other family members’ experiences. Existing research on the sibling perspective, specifically, is relatively limited and mixed. Some studies have demonstrated that neurotypically developing siblings have positive experiences toward their siblings with ASD (e.g., Rivers & Stoneman, 2003), whereas other studies have revealed disparate findings, particularly when siblings with ASD exhibit challenging behaviour (e.g., Mascha & Boucher, 2006). Further research on the sibling experience is warranted.

Objectives: The purpose of the current study was to understand the lived experiences of a sample of typically developing siblings of children with ASD.

Methods: Nine typically developing siblings (5 male, 4 female) of children with ASD (8- to 17-years old, mean age = 12.2 years, SD = 3.4 years) participated in the study. Siblings with ASD were 9- to 17-years old (mean age = 13.2 years, SD = 2.2 years) and were predominantly male (1 female). Open-ended questions were used to flexibly guide the interviews, which took place at participant homes. Initial interview questions were strategically broad (i.e., “What is it like to be (child with ASD)’s brother/sister?”) as a means of allowing each participant to start at his or her own place of lived experience. Additional questions were used to gather a descriptive perspective of each sibling’s experience (e.g., “How do you and your brother/sister get along?”). Thematic analysis (Braun & Clarke, 2006) was used to analyse the interview data.

Results: Preliminary results yielded three major themes: (1) “My family is different”, (2) “I am a caregiver”, and (3) “I accept that my sibling has ASD but sometimes I wish they didn’t”. The first theme encompasses participants’ understanding that having a child with ASD in the family made their family unique. Participants acknowledged that they needed to make adjustments as a result of having a family member with ASD. They also described how role expectations were different compared to families that did not have family members with ASD. The second theme highlighted the protective role that participants assumed over their siblings. Many participants described a sense of responsibility toward their family member with ASD. The third theme revealed an array of positive (e.g., love, amazement, pride) as well as negative feelings (e.g., frustration toward challenging behaviour) surrounding the experience of being a brother or sister to a sibling with ASD.

Conclusions: The current findings highlight a sample of neurotypically developing siblings’ perspectives regarding their siblings with ASD and the family dynamic. Participants described rich perspectives surrounding their experiences. Further research examining sibling relationships may have important implications on the development of supports for siblings of children with ASD.