Understanding Intolerance of Uncertainty for Autistic Adults: Development of the Adult Coping with Uncertainty in Everyday Situations© Programme

Background:  Anxiety is a common co-occurring condition in adults with ASD. Difficulty tolerating uncertainty is a major contributor to the development and maintenance of anxiety. Our work indicates that Intolerance of Uncertainty (IU) is a key construct in anxiety in ASD that might contribute to the development and maintenance of a range of anxiety subtypes. We recently developed a parent based group intervention (CUES: Coping with Uncertainty in Everyday Situations), aimed at providing parents of young people with ASD with effective strategies to reduce their child’s IU. Our development project demonstrated that the intervention was acceptable and feasible to families. No such programme exists to address IU in autistic adults. The aim of this study was initially to understand the experience of uncertainty on a day-to-day basis and identify suitable outcome measures so that we can then adapt and evaluate our intervention programme to make it suitable for use, on an individual basis with autistic adults experiencing IU.

Objectives: To develop and provide evidence of daily measurement of personally salient uncertain situations among autistic adults, in order to understand their experiences of IU and identify and capture suitable targets for treatment.

Methods:  A multiple baseline observational single case design was used to identify and track personally salient uncertain situations with 4 autistic adults on a day-to-day basis, over a ten week period. Participants were aged over 18 years, with a diagnosis of ASD, with intellectual ability in the average range. Electronic daily diaries provided individualized self-monitoring of personally relevant symptoms, behaviours and engagement in target uncertain situations. Participants would then receive eight, one hour weekly IU treatment sessions with a qualified CBT therapist. Daily diaries are used throughout to provide individualized self-monitoring of personally relevant symptoms, target behaviours and engagement in target situations.

Results: All four adults identified a personally salient target uncertain situation that impacted on daily functioning. Situations identified included uncertainty related to social situations (x2), uncertainty related to work/professional demands (x2). Participants were able to actively engage in daily self-monitoring of their target uncertain situation and report on a range of symptoms and behaviours (negative affect, avoidance, confidence) associated with the situation. Stable baselines were achieved for all participants within two to three weeks of onset of self-monitoring; the daily diaries were then completed throughout the eight week intervention phase. Changes in self-monitoring of individualised target behaviours during the treatment phase will be reported.

Conclusions:

Our study is the first to explore the impact of intolerance of uncertainty on daily functioning for autistic adults. The single case observational design provides evidence that autistic adults are able to identify uncertain stations that have an impact on daily life. Furthermore, our data indicate that autistic adults find daily self -monitoring of the symptoms and behaviours associated with these situations to be feasible and acceptable. The results provide evidence of the feasibility of self-monitoring diaries as a method of capturing personally salient and meaningful data for use in intervention programmes targeting intolerance of uncertainty for autistic adults.