A project researching user-views on the outcomes of social care and support services for disabled children and their families presented new challenges to a research team. While the team had experience of working with other groups of disabled children, this project was the first in which the team sought to work directly with children with autistic spectrum disorders. This paper reports the process by which the research design and methods used were developed and tailored to the needs and abilities of these children. The key lesson learnt was the value of crossing disciplines, research areas and professional boundaries when trying to identify ways of working with a 'hard to reach group'.

By understanding the way relationships between siblings change over time, adult siblings' contribution to the lives of their disabled brother or sister can be better supported.

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.

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.

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