Siblings of Children with Autism: the Siblings Embedded Systems Framework

Abstract

Purpose of ReviewA range of interacting factors/mechanisms at the individual, family, and wider systems levels influences siblings living in families where one sibling has autism. We introduce the Sibling Embedded Systems Framework which aims to contextualise siblings’ experience and characterise the multiple and interacting factors influencing family and, in particular, sibling outcomes.Recent FindingsFindings from studies that have reported outcomes for siblings of children with autism are equivocal, ranging from negative impact, no difference, to positive experience. This is likely due to the complex nature of understanding the sibling experience. We focus on particular elements of the framework and review recent novel literature to help guide future directions for research and practice including the influence of culture, methodological considerations, and wider participatory methods.SummaryThe Siblings Embedded System Framework can be used to understand interactive factors that affect sibling adjustment and to develop clinically, educationally and empirically based work that aims to enhance and support sibling adjustment, relationships, and well-being in families of children with autism.

Siblings’ experiences of growing up with children with autism in Taiwan and the United Kingdom

“…This may result in the greater involvement of the partner and the greater sharing of information about autism with the siblings and grandparents, leading to more harmonious relationships. As proposed in the sibling embedded systems framework, parents often endorse the prescribed cultural values and adhere to the social norms when bringing up their children (Kovshoff, et al, 2017). Since the severity of the children with autism in the two countries did not significantly differ in the present study, engrained cultural philosophy may be one of reasons that the patterns of experience were different in the Taiwanese and the UK families.…”

“…As emphasised in theoretical models of sibling development, such as the sibling embedded systems framework (Kovshoff, Cebula, Tsai, & Hastings, 2017), it is essential that we consider the influence of the whole family system, and a range of ecological factors, including the wider culture, on sibling outcome. Factors such as social support, financial resources, societal acceptance and accessibility of services may all be associated with parental stress which in turn may influence sibling adjustment (see also Saxena & Adamsons, 2013).…”

‘I don't live with autism; I live with my sister’. Sisters’ accounts on growing up with their preverbal autistic siblings

“…Despite the underlying assumption of pathology, the mixed findings so far do not suggest a strong negative effect for siblings growing up with an autistic brother or sister (Hastings & Petalas, 2014). Kovshoff et al (2017) also suggest that negative outcomes found in some studies are "by no means inevitable or universal": (page 38).…”

“…Their subjectivities and experiences of siblinghood as well as the ways they negotiate their roles across different developmental stages remain underinvestigated (Punch, 2008). Siblings' experiences are interconnected to a web of relationships across time and space with numerous important others within their family and social context (Kovshoff, Cebula, Tsai & Hastings, 2017). Edwards, Hadfield, Lucey and Mauthner (2006) emphasised the importance of the social context when considering siblings' experiences as they are culturally informed family roles, responsibilities, and obligations.…”

1000 Families Study, a UK multiwave cohort investigating the well-being of families of children with intellectual disabilities: cohort profile

“…Sometimes explicitly, but often implicitly, researchers making these comparisons between families of children with ID and those without are drawing on a family systems perspective that has been applied to families of children with a variety of severe cognitive and developmental disabilities 8–11. The core idea is that families are systems and so changes in one part of the family system, or in one family subsystem (eg, spousal, parent–child, sibling–sibling), will affect other family members and/or other family subsystems.…”