Experiences of Autism Diagnosis: Parental Experiences and Interpretations of the Process of Having a Child Diagnosed with Autism

The experience of having a child diagnosed with ASD is known to be challenging for parents, and research on this has been increasing over the past decade. This study provides a thematic analysis of the lived experience of having a child diagnosed with ASD, based on interviews with seven parents (aged 35 to 52 years) of six children (aged 7 to 13) who had received a diagnosis of ASD within five years of starting primary school. Parents described the experience of having a child diagnosed with ASD as raising questions and issues in four interconnected areas of concern: “seeing the child”, “navigating the professional system”, “accommodating the needs of the child in balance with the needs of the whole family” and “helping the child find a way of being in the world”. For parents, receiving a diagnosis of ASD involved a challenge of “meaning” – a challenge of integrating the information about their child provided in the diagnosis with their sense of who their child is. Parents were particularly appreciative of professionals who assisted them with this task and who showed an appreciation of the unique qualities of their children. The experiences of these parents have implications for how professionals might communicate with parents and families, as well as how they can provide clear and definite information, address some core practical concerns of parents and families and at all times show an appreciation of the child.