Living with a sibling who has Autism Spectrum Disorder

Abstract

The document presented herein is a manuscript-based thesis, entitled: Living with a Sibling who has Autism Spectrum Disorder (ASD). This thesis consists of an exploratory investigation to learn more about the experiences of individuals who have a sibling with ASD. The data obtained is discussed in two papers. The first paper focuses on the discussion of future caregiving which involves the transference of care to siblings (with typical development) when parents are no longer able to provide care. The scope of the second paper solely focuses on data obtained from interviews using Interpretative Phenomenological Analysis (IPA; Smith, Flowers & Larkin, 2009). Siblings highlighted particular aspects of future caregiving that harboured concerns, resulting in the discussion of four relevant themes. The second paper was guided by the Family Adjustment and Adaptation Response (FAAR) Model (Patterson, 1988, 1989; Patterson & Garwick, 1994) to explore the type of stressors that were experienced and whether adequate supports were being utilized. To understand experiences specific to demands and supports, a mixed-methods approach was employed. Informed by the FAAR, interview transcripts were analyzed using Thematic Analysis (Braun & Clarke, 2006), revealing four themes. Descriptive statistics were also provided based on data obtained from two questionnaires: The Sibling Inventory of Behaviour Scale (SIBS) and The Sibling Daily Hassles and Uplifts Scale (SDHUS). Results concluded that siblings are constantly in the process of finding new resources and developing new capabilities to manage demands across the life span. Clinical implications for each paper are discussed further.