Autism spectrum disorders, family life and short breaks: an investigation into the experience of family life and short breaks of families that have children with autism spectrum disorders in an English county

Abstract

Research was undertaken in an English shire county, investigating the experience of families that have children with autism spectrum disorders (ASD) regarding daily life and their attitudes and experience concerning short breaks (‘respite care’). The research comprised three phases: a postal survey of 256 families, a survey of 27 social workers, and semi-structured interviews carried out with mothers, fathers, siblings and children with ASD from 14 families. The research identified the significant impact of ASD on family life. Differing key themes emerged within mothers’, fathers’, siblings’ and children with ASD’s narratives. Benefits and shortcomings of short breaks were identified and quality indicators were suggested in a number of key areas: organisational, environmental, staff-, child- and family-related and psychological. Factors associated with short breaks use included family attitudes and values, information, service shortfall, family adaptation, child’s age, diagnosis and school placement and allocation to a social worker. Social workers were identified as having inconsistent and at times incorrect understandings of ASD; the factors associated with access to services were mediated by the views of the social worker involved. An interactive, systemic model, derived from the analysis, is suggested as helpful in understanding interplay between families, social workers and service providers.