An Investigation into Parental Understanding of Autism and the Development of an Individualised Autism Profiling Tool

Raising a child with autism can be extremely challenging for parents and families due to the complex nature of autism and the wide variation in the type and severity of symptoms children experience. Several factors may influence parent perceptions about autism and their understanding of the child’s unique traits related to autism. To date, there is no research to identify the particular pattern of parental understanding of autism as related to their child’s individual strengths and challenges. Research into specific parent factors is critical to help inform intervention strategies that can meet the needs of children with autism and their families. The main aim of this research is to provide an investigation of the basic elements comprising parental understanding of their child’s presentation of autism and their pre-existing knowledge about the condition. In exploring this, an evidence-based tool, the ‘Individualised Autism Profiling’ (IAP) tool was developed in conjunction with key stakeholders and specialists in the field of autism. The first research objective was to determine whether there are differences between parents’ understanding of the general nature and characteristics of autism and the characteristics of their child with autism. The second research objective was to identify distinct parent profiles based on their child’s individual characteristics and unique needs. Findings from this research support the notion that parental understanding of autism in general and in relation to their child with autism might not be theoretically distinct constructs, and that parents of children with autism may recognize as common the characteristics of their child as related to all children with autism. Moreover, the present research provides novel evidence for the proposal of three distinct profiles of parental understanding of autism: a high, a moderate, and a poor level of autism understanding. These findings could lead to a better understanding of how parents understand their child’s potential and unique needs in the context of autism and would be important for informing decisions for intervention strategies to optimize child, parent, and family outcomes.