Falling into an abyss: An Interpretative Phenomenological Analysis of the lived experiences of the parents of autistic daughters in the UK

Abstract

Whilst research increasingly focuses on autism in girls, there is a dearth of literature around the experience of parenting an autistic daughter in the UK, with the few studies that do focusing only on mothers. The data was gathered through in-depth semi-structured interviews that explored the lived experience of parenting an autistic daughter for six mothers and two fathers, from their first concerns, through to the diagnosis, with life in-between and beyond. Their daughters were aged between eleven and seventeen at diagnosis and were diagnosed within the UK. IPA was used to analyse the data. Five superordinate themes were identified: Journey to diagnosis; Negotiating systems; Psychological impact; Living with an autistic daughter; and Reflections. The research demonstrates that the parents of autistic daughters find themselves seeking professional advice and support for a pervasive condition that, whilst better known for its familiar male presentation, appears invisible in its female form to all but those in their close family. The impact of the ensuing struggle to have their concerns believed and to obtain her autism diagnosis often has profoundly negative consequences, leaving families in crisis, chaos in daily life, and parents’ mental and physical health compromised. The subsequent delay in diagnosis means that their daughter remains unsupported in her education and social life, with the adverse ramifications of this reverberating throughout her family. The findings of this study have implications for parents, professionals, and the field of research in terms of the need for a better recognition and understanding of female autism, an apposite educational setting, and a holistic approach to family support.