Addressing Intolerance of Uncertainty in Anxious Young People with Autism Spectrum Disorder

Background:  Anxiety is a significant problem for many children with a diagnosis of autism spectrum disorder (ASD). Children with ASD frequently present with multiple anxiety disorders concurrently therefore treatments targeting underlying anxiety mechanisms may be most efficacious. Over the last five years our group has worked towards providing a theoretically informed formulation of anxiety in ASD. This work has focused on a consideration of a well-established model of anxiety: the Intolerance of Uncertainty Model. Intolerance of uncertainty (IU) is a construct associated with a range of anxiety disorders. It is a ‘broad dispositional risk factor for the development and maintenance of clinically significant anxiety’ in neurotypical populations. The concept of IU has utility not only to theoretically inform understanding of the factors underlying the development and maintenance of anxiety, but has also been shown to be a beneficial target for treatment. Intervention studies with neurotypical individuals with high IU provide evidence that reduction of IU is associated with reduction in anxiety. Cognitive behavioural treatments for clinically anxious patients have been developed which emphasise treating the cognitive process rather than the cognitive content of anxiety, specifically by aiming to increase patients’ tolerance for uncertainty and thereby achieving more sustainable change. Over the past five years research has investigated the relevance of IU to anxiety in ASD. This work indicates that IU is a key construct in anxiety in children and adolescents with ASD, which may account for the increased vulnerability to a range of anxiety disorders in this population.

Objectives:  Our objective was to develop and evaluate the feasibility and acceptability of a parent group intervention targeting IU for young people with ASD.

Methods:  Phase One: Focus group were undertaken to inform the development of the intervention materials and trainers’ manual. An eight week manualised intervention programme was developed; CUES, Coping with Uncertainty in Everyday Situations. The treatment aimed at providing parents of children with ASD, with effective strategies to reduce their child’s IU in everyday situations. Phase Two: The intervention was delivered in two staggered parent intervention groups to eight parents of children with ASD, aged between 8 and 12 years. The intervention included in-session activities and homework tasks. Baseline and outcome measures assessing child and parent anxiety and IU were completed. Individual follow-up interviews were undertaken with parents to ascertain acceptability and feasibility.

Results:  Attendance at and retention to the intervention programme was good. Findings demonstrated the intervention to be acceptable and feasible to families. Parents reported a reduction in their own and their child’s intolerance of uncertainty and anxiety subsequent to participation on the programme.

Conclusions: The findings indicate that parents of young people with ASD view an intervention which focuses on intolerance of uncertainty to be valid and meaningful. The data available indicate that CUES may have promise as a targeted package to assist young people with ASD and their families to manage their responses to uncertainty.