"He's the best brother anyone could want and he should be really happy that he's different" : children's experiences of having a sibling with Autistic Spectrum Disorder : an interpretative phenomenological analysis

This study explores the experiences of four typically developing children (aged between 7- 9 years) who are living with a sibling with Autistic Spectrum Disorder (ASD). A systemic theoretical framework provided the backdrop to this study, whereby Ecological Systems Theory (Bronfenbrenner, 1979) and Family Systems Theory (Bowen, 1978) guided my thinking throughout the research process. The literature review highlighted that although considerable research has explored experiences of adolescents exclusively or those from childhood through to adolescence as a whole, few studies have explored the experiences of those in middle childhood, with this age group being “conspicuously absent in the literature” (Petalas et al., 2009. p. 395). Furthermore, few studies have endeavoured to elicit the voices of siblings of children with ASD exclusively, as opposed to parental and/or practitioner reports. Additionally, the majority focus on specific areas of children’s lives and/or development, often documenting negative outcomes, rather than exploring their general perceptions of living with a sibling with ASD. This research seeks to contribute to the dearth of literature and to provide a balanced perspective of the voices and experiences of those in middle childhood. Semi-structured interviews were employed, alongside the creative method ‘Draw, Write and Tell’ (DWT), to explore children’s understanding and experiences of ASD and what supports they would like to help them with living with a sibling with ASD. I understand that this is the first study within the UK context to employ the DWT creative method alongside interviews within this topic area The qualitative methodology Interpretative Phenomenological Analysis (IPA) was employed for this study. A principle strength of IPA is that it “goes beyond, the participants’ own sense-making and conceptualizations” (Smith et al., 2009: 186) through “a process of engagement and interpretation on the part of the researcher” (Smith, 2011, p. 10). It seeks to understand the unique and subjective experiences of participants using a phenomenological and idiographic approach. Five superordinate themes were identified from the analysis: ‘understanding of ASD’, ‘a broad spectrum of experiences’, ‘desire for control’, ‘acceptance’ and ‘support’. Each theme is discussed and is illustrated by quotes and drawings from the participants. The discussion makes links between themes identified in the analysis, the study’s research questions, psychological theory and the pre-existing literature. All participants demonstrated an understanding of ASD to varying degrees, along with positive perceptions and experiences and negative experiences and challenges associated with living with a sibling with ASD. Findings indicated that all participants feel they are well supported with living with a sibling with ASD. All identified coping strategies used and social support drawn upon; all but one participant expressed a need for respite. The findings of this research emphasise the complex and dynamic nature of the participants’ subjective experiences. The findings of the current study help to inform suggestions for future research and implications for professional practice, with particular reference to the work of educational psychologists.