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Human Services


Dr. Dorothy Scotten


When a child has autism spectrum disorder (ASD), the family structure is affected. Although researchers have documented increased stress and depression among parents of children with ASD, they have not adequately explored siblings’ perspectives on the emotional, physical, and/or psychological implications of having a brother or sister with ASD. The purpose of this qualitative phenomenological study was to explore siblings’ lived experiences of growing up in a household with a sibling with ASD. The conceptual framework for this study was grounded in the siblings embedded systems framework (SESF), which helps contextualize siblings’ experiences, including interacting factors, and how these experiences affect siblings’ relationships with siblings and other family members. Semi structured interviews were conducted, via the Zoom videoconferencing platform, with six young adults who had grown up in a household with a sibling who was diagnosed with ASD. Data analysis yielded five key themes: communication, stress, support systems, feelings, and responsibility. Participants expressed being scared and/or fearful, and they indicated a desire for early intervention from professionals to increase communication and interactions with their sibling diagnosed with ASD. The study may foster positive social change by increasing professionals’ understanding of how-to best support siblings of individuals with ASD. SESF may be useful in helping all professionals (i.e., therapists, caregivers, social workers, etc.) to understand how childhood experiences can affect siblings.

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