Living with Intolerance of Uncertainty: Experiences from Families of Autistic Children

Poster Presentation
Saturday, May 4, 2019: 11:30 AM-1:30 PM
Room: 710 (Palais des congres de Montreal)
J. Goodwin1, A. Plant2, A. Henry3, M. Freeston4 and J. Rodgers3, (1)Institution of Neuroscience, Newcastle University, Newcastle Upon Tyne, United Kingdom, (2)Child and Adolescent Mental Health Service, Northumbria Healthcare NHS Foundation Trust, Newcastle Upon Tyne, United Kingdom, (3)Institute of Neuroscience, Newcastle University, Newcastle Upon Tyne, United Kingdom, (4)Newcastle University, Newcastle upon Tyne, United Kingdom

Anxiety is common in autistic children. One key mechanism underlying anxiety is intolerance of uncertainty (IU), which is a tendency to react negatively on an emotional, cognitive, and behavioural level to uncertain situations. Previous research has indicated that autistic people may be particularly vulnerable to experiencing IU and that there may be important interactions between IU and autism related characteristics. Understanding the contexts, responses to, and impact of IU is critical to the development of appropriate anxiety interventions.


We aimed to explore the types of uncertain situations that cause difficulties for autistic children and how IU impacts on the daily lives of autistic children and their families.


60 families were recruited to the study through clinical services or a research database in the North East of England. The children were aged 6 – 16 years, had a diagnosis of ASD, and were experiencing anxiety related to difficulties tolerating uncertain situations in their daily lives. Parents completed Intolerance of Uncertainty Scale - Parent (IUS-P), which reported on their child’s IU. Where possible, children completed the child self-report Intolerance of Uncertainty Scale (IUS-C). Parents completed the Anxiety Scale for Children–ASD to assess their child’s anxiety and, where possible, children completed the corresponding child version of the scale. Parents completed a semi-structured interview during which they identified two everyday uncertain situations that were challenging for their autistic child: the first was a situation that their child would like to participate in that was difficult for them due to uncertainty (e.g., after school activities), and the second was a situation that was a necessary part of everyday life that their child struggled to engage with due to uncertainty (e.g., completing homework). Parents were asked to report on their child’s reactions to these situations, the intensity and duration of their responses and the impact on the child and the wider family unit. The data from the semi-structured interviews were then analysed thematically.


The levels of child IU reported by parents and children are comparable with other published studies and above indicative clinical cut offs. Parents identified a range of contexts in which their child experienced IU, including situations where there is potential for exposure to aversive sensory stimuli, challenging social communication contexts, changes to routines, and performance related uncertainty.


Our data indicate that in this sample of 60 families with an autistic child who is experiencing anxiety, rates of both child and parent reported child IU are high, supporting previous research. Parents were able to identify a range of everyday situations which are characterised by uncertainty that interfere significantly with child and family functioning. Both autism-related characteristics and experiences (e.g., sensory hypersensitivity, social communication difficulties, rigidity) and IU were identified as important in these everyday situations, and were found to interact to increase anxiety. . These data provide further support for the importance of considering the interplay between IU and autism-related characteristics in the development of interventions to tackle anxiety for autistic people.

See more of: Emotion
See more of: Emotion