Continuity, commitment and context: adult siblings of people with autism plus learning disability

Abstract

Sibling relationships are usually lifelong and reciprocal. They can assume particular significance when a brother or sister has a learning disability. Until recently, adult siblings of people with disabilities such as severe autism have been ignored by policy, practice and research. This qualitative study contributes to an emerging literature by exploring how adult siblings, who have a brother or sister with autism (plus learning disability) and living in England, give meaning to their family (and caring) relationships and engage with service delivery. We spoke to 21 adult siblings using semi-structured interviews and met with 12 of their siblings with autism. Our analysis, using a broad narrative approach, demonstrates the continuity of the sibling relationship and an enduring personalised commitment. The nature of this relationship, however, is sensitive to context. How non-disabled adult siblings relate to their childhood experience is fundamental when making sense of this, as is their need to fulfil other social and family obligations, alongside their 'sense of duty' to support their disabled brother or sister. Sibling experience was further mediated by negotiating their 'perceived invisibility' in social care policy and practice. Our work concludes that by understanding the way relationships between siblings have developed over time, adult siblings' contribution to the lives of their brother or sister with autism can be better supported for the benefit of both parties. Such an approach would support current policy developments.

‘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

“…Eleven service personnel, usually key workers or house managers, known to the sample siblings, and suggested by them, were also interviewed about their perceptions of siblings' roles and relationships (Tozer et al . ).…”

“…Siblings reported that they themselves had received little attention in general from services and, while growing up, had taken on ‘stigma by association’ (See Tozer et al . ). Some said their brother or sister liked meeting new people such as their own friends who were relaxed spending time with them.…”

“…The experience of those with autism would offer important context to the study. (see Tozer et al 2013).…”

“…They often felt that their brother or sister and their relationship with him or her were seen negatively by others, apart from those who knew him or her well. Siblings reported that they themselves had received little attention in general from services and, while growing up, had taken on 'stigma by association' (See Tozer et al 2013 or sister liked meeting new people such as their own friends who were relaxed spending time with them. This contrasts with often-held assumptions in the media, and sometimes in services, that people with autism are intrinsically unsociable (see Caldwell 2006).…”

“…In a few reported instances, practitioners worked hard to include family members in the life of the person with autism (see Tozer et al 2013). Social care staff interviewed, however, had usually not thought very much about the particular role of adult siblings in the sense that they were seen as a continuation of parents, once they were less able to offer support.…”