Mothers' experiences of their child's diagnosis with an autism spectrum disorder

Abstract

Autism or autism spectrum disorder (ASD) is a multifaceted neurological condition that impairs social interaction, communication and behaviour. The current increase in the prevalence of ASD is alarming. A large population of parents is left searching for answers regarding their child’s developmental delays. Once their child has been diagnosed, they have to deal with the challenge of raising such a child. Parenting a child with ASD is particularly challenging for mothers as it has been reported that they struggle with poor health and wellbeing as well as high stress levels. Literature has also shown that the maternal interaction style impacts the prognosis for the child’s development, again highlighting the importance of the mother’s wellbeing. Several studies refer to the severe impact of ASD on the family as a unit, yet the unique challenges that mothers face are often overlooked. To address the wellbeing of these mothers, it is necessary to understand their experiences of their child’s diagnosis with ASD. This qualitative phenomenological study explored and described mothers’ experiences of their child’s diagnosis with ASD by using the Process-Person-Context-Time model from Bronfenbrenner’s bioecological theory as a framework. Unstructured interviews with seven mothers were conducted, voice recorded and transcribed. Data was analysed using thematic content analysis. Findings revealed four interrelated themes: 1) the mother’s experience of the interactions and relationships within her immediate family (Proximal Process), 2) the mother’s experience of her internal and external characteristics and resources (Person), 3) the mother’s experience of her environment (Context), and 4) the mother’s experience of the journey through time (Time). Bronfenbrenner’s theory in its matured form also proved to be of value in understanding these mothers’ daily lives and challenges. The key findings provide valuable insight that may inform professionals who develop support programmes aimed at mothers with ASD children or that may guide such professionals’ therapeutic interventions with mothers with ASD children.