What Meaning does Raising a Child with Autism have for Parents? A Qualitative Exploration

Introduction: Children with autism experience difficulties in social interaction and communication which are often manifested behaviourally. The nature of these difficulties means that the task of parenting is often challenging. This study therefore aims to explore which aspects of raising a child with autism are most meaningful for parents. It will also investigate what, if any, are the positive aspects related to the experience of having a child with autism. Method: A qualitative approach was used, with data collection and analysis being guided by the principles of Interpretative Phenomenological Analysis (Smith, 1995). Seven interviews were conducted which yielded approximately 10 hours of data. Interviews were recorded and transcribed to facilitate analysis of the narratives. Results: The meaning of being the parent of a child with autism was conceptualised within four core themes of: autism as a journey, what it means to live with autism; negotiating the social world; and positive aspects of raising a child with autism. Three of these themes contained sub-themes which provided further insight into the participants’ experiences. Being the parent of a child with autism was represented as a complex and dynamic process. Discussion: The results of the research are discussed in the context of relevant literature. Previous findings regarding receiving a diagnosis of autism, coping, acceptance and adaptation are essentially supported by this research. However, these results also acknowledged the significant role of social encounters in the participants’ experiences and the positive aspects of raising a child with autism. The clinical implications of the findings are discussed. Suggestions for future research are also made in response to the current findings and potential imitations of the methodology are considered. Conclusions: The findings from this research indicate that being the parent of a child with autism is characterised by many meaningful experiences, some of which are significant moments in the process of raising a child with autism. For example, the journey to, and receipt of, their child’s diagnosis was identified as a particularly important event in the experiences of the participants. Furthermore, there are complex interactions between the different aspects of these experiences which reflect the ever-changing nature of the challenges of parenting a child with autism