Separating ‘emotion’ from ‘the science’: Exploring the perceived value of information for parents and families of children with autistic spectrum disorder

Abstract

Autistic spectrum disorder (ASD) is a life-long condition. In recent years, there has been a rise in the number of children diagnosed with ASD and a greater recognition that parents need clear, accessible information communicated through different modalities. The objective of this research was to explore the views of stakeholders regarding their information needs, current information modalities and the perceived barriers and complexities of information. Three focus groups with the same stakeholders were conducted with a range of individuals from a variety of backgrounds, all of whom had a personal and/or professional interest in ASD. The same stakeholders were included in all three groups to promote depth of analysis and to facilitate rapport. All focus groups were audio-recorded, transcribed and analysed using thematic analysis. Three main issues were identified, including (1) the value of particular information sources; (2) the vulnerability of families and (3) the need for validated evidence. It was concluded, therefore, that information should be available through a multitude of modalities, accounting for the educational ability and economic status of families. The information should also be communicated in an accessible style, should be presented as trustworthy and clinical professionals may play a key role in translating information. Such information also needs to account for practical problems inherent to having a child with ASD, including time constraints and fatigue.