'An unplanned journey' : an interpretative phenomenological analysis of the lived experience of having a child with autism

Abstract

This study used a qualitative approach based on interpretative phenomenological analysis to investigate the meaning of the lived experience of having a child with autism as seen through the eyes of the participants. Semi-structured interviews were conducted with three mothers and three fathers of autistic children. The analysis of the interviews revealed nine main themes: initial concern; reactions to the diagnosis; impact on family life; coming to terms with the child's disability; parenting difficulties; public perceptions; support; a positive note after the dreaded diagnosis; and future worry. The findings suggested that the experience of having a child with autism was an ongoing process that begun with the realization that there was something wrong with the child and developed as parents eventually got the diagnosis and tried to adjust themselves to their child's disability. Apart from having to cope with the distinctive challenges that caring for a child with autism entailed, parents had to deal also with the uncertainty surrounding their child's future. However, although caring for a child with autism posed enormous challenges, most parents explained how having a child with autism had also its own unique rewards. The findings also indicated that the fathers contributed important information distinct from the mothers' account of their own experience. The findings of this study are discussed in terms of past research studies. The study provided an insight into the experience of having a child with autism from an insider's perspective. By gaining this type of awareness and understanding, practitioners can be in a better position to derive successful outcomes.