Parental perspectives of the everyday experiences of uncertainty among young children on the autism spectrum

Background: Anxiety commonly co-occurs in autism. Exploring and understanding potential underpinning mechanisms contributing to and maintaining anxiety in the early years is important in managing anxiety. Intolerance of uncertainty (IU), a tendency to find uncertainty difficult, is a transdiagnostic mechanism contributing to anxiety, but little is known about how IU may be experienced in young children on the autism spectrum. This study investigated parental perspectives of children's experiences of uncertainty. Method: Parents of 13 children aged 4-7 years participated in focus groups. Participants were recruited until data saturation was reached. Thematic analysis using a framework analysis approach was employed, with 18 themes identified. Results: Parents perceived IU as an important construct that often manifested in their children's heightened emotional and behavioural reactivity. Parents described responses to uncertainty as more intense for their children on the spectrum compared to non-autistic children, with some behaviours associated with or exacerbated by autism characteristics. Parents also described various strategies aimed to reduce uncertainty or increase children's ability to cope with un-certainty. Most reported that difficulties with uncertainty had a significant negative impact on family well-being. Conclusions: Given that IU can present early in life for children on the spectrum, with distressing experiences that can negatively impact everyday life and well-being, further research into early and targeted interventions is needed. The findings highlight the support needs for families of young children on the spectrum and will inform the evaluation of a targeted parent-mediated intervention to support children in managing difficulties with uncertainty.