The experience of families around diagnosis of a child with Autism Spectrum Disorder: finding from a qualitative study
Marianne Rajkovic and kylie valentine
Social Policy Research Centre
Contact Email:   mrajkovicunsw.edu.au

This paper draws from a research project, ‘Post-diagnosis support for children with Autism Spectrum Disorder (ASD), their families and carers’, which is being conducted at the Social Policy Research Centre at the University of New South Wales and funded by the Commonwealth Department of Families, Housing, Community Services and Indigenous Affairs. The project draws on qualitative interviews with families, clinicians and service providers to explore the experience of families in the period following diagnosis, and the supports and services that families find most effective.

This paper explores the tasks parents face in finding and choosing therapies, and the engagement of parents in therapeutic programs. For autism spectrum disorder the path from diagnosis to treatment is not clear cut. As children with ASD present with symptoms which are diverse from sensory deficits to communication problems, with intellectual deficits being present for some children, the most suitable treatment can be much harder to determine than for many other disabling conditions. Parents often feel disempowered and overwhelmed by the diagnosis of ASD. The priorities for families in selecting therapies are often based on reducing the severity of behavioural traits of autism which are anti social, improving communication and eliciting emotional response from the child. Several therapeutic approaches to ASD involve a ‘parent training’ component, changing the ways that parents (and sometimes siblings) communicate with and interact with the child with ASD. In this paper, we discuss the processes by which parents make decisions about treatment and their experiences of their child’s treatment.

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