Personalisation, family relationships and autism: Conceptualising the role of adult siblings

Abstract

Current policy discourses demonstrate a weak connection to broader theoretical debates about family obligation and in particular how family responsibilities become negotiated over time and across the life course. How policy imagines family care can, therefore, be different to the actual experiences of families. This qualitative paper, using semi-structured interviews, explores the experience of a particularly neglected group, adult siblings, who have a brother or sister with autism (plus learning disability). We spoke to 21 adult siblings, met with 12 of their siblings with autism and talked to 12 health and social care professionals.Findings: Our analysis suggests that connectedness and commitment, which remained subject to continuous redefinition by all family members, informed sibling relationships Practitioners, however, struggle to engage with this complexity, thereby undermining the extent siblings' relationships can be realised.Application: The paper concludes that policy initiatives are at risk of becoming an uneasy compromise, in which the need to offer choice occurs alongside the 'problem' of managing family care. Sibling relationships are more than simply 'being of' or 'belonging to' a family. They are dynamic, subject to contingency and negotiation. Interventions should be formulated to work with these assumptions, without presupposing a definite experience fixed in time and space. This would not only maximise the disabled siblings' quality of life, but also ensure a more productive and fulfilling context for family relationships.

‘Recognized, Valued and Supported’? The Experiences of Adult Siblings of People with Autism Plus Learning Disability

“…Consistent with our findings, this dialogue would need to reflect the different types of involvement siblings might want in their brother or sister's life. Person‐centred planning and reviews could offer an opportunity to facilitate this and enable the sibling to share information about family experiences (see Atkin & Tozer ). Sibling details, for example, could be noted on individual records and – with permission – shared with other agencies, particular when new care arrangements are been discussed.…”

Does sibling relationship matter to self-concept and resilience in adolescents under residential care?

“…On the contrary, the dissolution or rupture of emotional ties through separation, deprivation or unresolved grief may lead to psychological disorders during infancy and throughout adulthood (Guidano, 1987;Guidano & Liotti, 1983). Although each family member is to experience the adverse situations in a particular way, generally there is a feeling that seems to be shared by the similarity and reciprocity of experiences, particularly among siblings (e.g., Atkin & Tozer, 2014;Conger, Stocker, & McGuire, 2009).…”

“…Since siblings spend a considerable amount of time together and the shared experiences and emotions may be intense, the quality of ties generally plays an important role in the life course of youth (Dunn, 1998;, especially when future experience can bring significant personal difficulties (Atkin & Tozer, 2014;Shortt, Capaldi, Dishion, Bank, & Owen, 2003).…”

‘My brother likes meeting new people, but don't ask him any direct questions’: involving adults with autism plus learning disability in a qualitative research project

“…The experience of those with autism would offer important context to the study. (see Atkin & Tozer ; Tozer et al . ).…”