Growing up with a Family Member with an Autism Spectrum Diagnosis: The Sibling Perspective

Background and Purpose:A diagnosis on the Autism spectrum can cover a wide variety of effects related to overall functioning and development. As a result, family members’ experiences with an individual diagnosed on the spectrum vary greatly depending on where on the spectrum the individual is diagnosed. While much research has been conducted regarding individuals diagnosed on the spectrum, as well as their caregivers, little research has been done on the perspective of siblings of an individual diagnosed on the spectrum. Such research is essential, as the number of individuals diagnosed with an Autism Spectrum Disorder continues to increase.

This research attempts to increase the literature on the experiences of siblings of individuals diagnosed on the Autism spectrum. The individuals interviewed discussed growing up with siblings diagnosed on the spectrum, their relationships with their siblings, their knowledge of Autism, and their perspective of their siblings’ future. 

Methods:Information for this research was obtained through in-depth qualitative interviews of young adults and adolescents diagnosed with an Autism Spectrum Disorder, as well as their caregivers and siblings. Data regarding sibling relationships was obtained from multiple perspectives through the interviews with siblings as well as caregivers. All participants were interviewed at a location of their preference, and the interviews were conducted by experts in the field of Autism. In total five families were interviewed (caregiver N=7; individuals diagnosed with Autism Spectrum Disorder=5; siblings=4). Interviews were audio-taped and transcribed, and for this research the interviews of siblings and caregivers were analyzed for common themes.

Findings:Interviews with siblings mirrored the lack of focus on their experiences in the literature; many siblings expressed resentment and jealousy over the amount of attention and resources devoted to their siblings diagnosed on the spectrum. These feelings appeared to be intensified if the sibling was diagnosed on the lower end of the spectrum. Two siblings reported strained relationships with their siblings. However, all individuals interviewed reported positive aspects of their siblings, and two participants revealed how their experiences growing up with their siblings had positive impacts on their life. Participants also revealed a lack of resources for individuals on the spectrum as well as their family members. Many reported not attending any workshops or interacting with others in similar situations. Other themes based on multiple perspectives were also uncovered.

Conclusion and Implications: Data obtained from the interviews reveal that while siblings of individuals diagnosed with an Autism Spectrum Disorder face many challenges, particularly if their sibling is diagnosed on the lower end of the spectrum, they also report positive experiences with their siblings and express a hope for their sibling’s future. Findings also reveal the need for greater supports for siblings of individuals diagnosed on the spectrum. Such supports are crucial with the increasing number of individuals diagnosed on the spectrum and can be met by workers in such fields as Social Work and Mental Health.