Anxiety in Children with Intellectual Disability: the Role of Intolerance of Uncertainty

Abstract

Approximately 2-3% of children worldwide are living with an Intellectual Disability (ID). Anxiety is prevalent in children with ID and can cause considerable distress for the child and wider family. Anxiety in children has been reported to have significant social and emotional impact and has a long-term effect, being predictive of mental health and economic status in adulthood. Despite this, the evidence base is limited with regard to psychological interventions for mental health difficulties in individuals with ID. More specifically, there is a clear gap in the literature pertaining to the evidence for the implementation of psychological interventions for alleviating anxiety in children with ID. A systematic review was undertaken to evaluate the quality of literature on psychological interventions for anxiety in children with ID. 17 papers were eligible for inclusion and reported on a range of interventions, including a behavioural approach for specific phobias, and CBT based interventions for generalised symptoms of anxiety. The evidence was highly variable in quality, and when aggregated, no intervention had sufficient empirical support to be considered current or promising evidence-based practice. Further research is therefore suggested in order to develop a strong evidence base from which clinicians can select effective interventions for this population. This research should additionally be clear and transparent in its conceptualisation, measurement and reporting of both anxiety and Intellectual Disability, in order to support the development of the field. There is a robust body of evidence that the transdiagnostic construct of Intolerance of Uncertainty (IU) plays a key role in a range of anxiety disorders in the typically developing population. Recent research suggests that IU may be particularly elevated in children with Autism Spectrum Disorder (ASD), and that this may account for the increased difficulties with anxiety experienced by this population. IU has therefore been proposed as a potential target for intervention in managing anxiety in children with ASD, and interventions such as CUES (Coping with Uncertainty in Everyday Situations) have begun to be successfully implemented to this end. However, a large proportion of children with ASD have a co-occurring ID, and the role of IU in the understanding and management of anxiety in this population had not been explored to date. An investigation was undertaken to address this gap. The study aimed to explore the relationships between IU, anxiety and repetitive behaviours (RRBs) in children with ASD and ID, and consider whether CUES can be adapted so that it is suitable for this population. Within the study, parents/carers of children with ASD and/or ID completed measures of anxiety, IU and RRBs online. In this sample, IU was significantly higher in children with ASD and ID than children with ASD only, however there was no difference in anxiety levels between these groups. In children with ASD (both with and without ID), it was observed that IU significantly positively correlated with anxiety and RRBs, and that IU, but not ID-status, was a significant predictor of anxiety. The CUES parent group intervention was then adapted and implemented with parents of five children with ASD and co-occurring ID and was reported to be acceptable and helpful for parents in managing IU in their children. Therefore, findings suggest that IU plays a role in anxiety in children with ASD and ID and may be an appropriate target for intervention for this group.