A matter of perspective: the experience of daily life and support of mothers, fathers and siblings living with children on the autism spectrum with high support needs

Much research has been undertaken examining the impact of living with autism on the family. However our understanding of life in families with children on the autism spectrum is predominantly based on research carried out with parents. Even when siblings are the specific focus of the study, parental report may be the primary data source (e.g. Griffith et al., 2013; Hesse et al., 2013). Furthermore it has been argued that fathers’ perspectives are under-represented, and that mothers are often the primary or exclusive participant in this area of research (Cridland et al., 2013; Flippin and Crais, 2011; Johnson and Simpson, 2013). This means that assertions are often made about ‘families’ or ‘parents’ based solely upon maternal report (Phelps et al., 2009; Weiss et al., 2013). Whether mothers’ perspectives should be privileged in this way, and whether such reports can be assumed to represent the views of their spouses and children is debatable (Seligman and Darling, 1997). Whilst there is some emerging literature focused on mothers and fathers (Jones et al., 2013; Pottie and Ingram, 2008) the need for more research focused within families, looking at all members, has been identified (Griffith et al., 2013). This study seeks to address this issue by investigating the experience of daily life and social support of fourteen families that include children and young people on the autism spectrum with high support needs. It has three main aims: (a) to identify the key themes within the narratives of mothers, fathers and siblings across these families; (b) to identify key factors emerging from the consideration of whole families’ experience of living with autism; and (c) to consider the implications of these issues for research and practice.