Fathers' experiences as carers for autistic children with learning disabilities

Accessible Summary This research explored the experience of four fathers of autistic children who also have learning disabilities. Fathers' experiences as carers are increasingly recognised in the literature; however, the studies of parental experience tend to centre mothers. The current research builds upon the recent and important focus upon fathers' experiences. The fathers in this study sometimes felt helpless and unable to fulfil the traditional role as protectors and providers, but they also had strong feelings of closeness with their children and developed new identities through the challenges and joys they experienced alongside their children.

Abstract

1.1 Background This small study explores the lived experience of four UK‐based fathers (one black British, one white Polish and two white British) caring for at least one child with a dual diagnosis of learning disability and autism. The key aim was to get as close as possible to understanding the experience of these fathers in their role as carers.

1.2 Methods The study makes use of interpretative phenomenological analysis (IPA) as an approach to gathering (via interview) and making sense of the fathers' experiences.

1.3 Findings and discussion We co‐constructed three themes following analysis of the interview transcripts: "fatherhood: not doing enough, not doing it right"; "crossing worlds: relearning how to communicate and reclaiming fatherhood"; and "uncertain futures." We found that, for these fathers, the experiences of anxiety and helplessness were balanced with the appreciation of their value as protectors, their shifting sense of identity and of their closeness with their children. Relationships were central throughout.

1.4 Conclusions The exploration of fathers' experiences helps to highlight the less‐measurable, nuanced aspects of the joys and challenges of caring for children with dual diagnoses of learning disability and autism which might be used to enhance the support provided and to inform new approaches.