City Research Online

Abstract

Background: Although previous qualitative work has identified the role of intolerance of uncertainty in the development of anxiety in autism, there has been little research on what uncertainty means exactly for autistic people and/or what types of uncertainties may be particularly anxiety provoking.

Methods: Fifteen autistic adults (five women) took part in this qualitative interview study in which we probed their understanding and experiences of uncertainty and its links to feelings of anxiety. We applied a grounded theory approach to transcripts of the interviews, broadly following Charmaz’s constructivist epistemology, to derive a theory of uncertainty as it is experienced by the autistic people we interviewed.

Results: From the interviews, we derived a model of uncertainty, which identified three different levels of uncertainty, ranging from the certainty of the “known,” through to the relatively manageable uncertainty of the “known unknown,” to the anxiety-provoking “unknown unknown” or that which cannot be made known. We propose in this model that anxiety can be understood as resulting from difficulties with avoiding or controlling the latter types of uncertainty through planning or information gathering.

Conclusion: Previous researchers had treated uncertainty as a unified construct. However, they may not have explored what uncertainty might mean for autistic people. We have shown in this study that not all uncertainties are experienced equally. We hope that this research will help develop a more nuanced understanding and that it constitutes the first step in disentangling anxiety from intolerance of uncertainty in autism.
Abstract

Community Brief

Why is this an important issue?
Anxiety can have a significant negative impact on autistic people’s lives. The current work is important because it aims to explore why uncertainties in life can often be very anxiety-provoking for autistic people.

What was the purpose of this study?
A number of researchers have tried to understand how anxiety “works” for autistic people and how this might differ from the experience of non-autistic people. Intolerance of uncertainty describes the ways in which someone responds to uncertainty as something which is undesirable. Evidence suggests that intolerance of uncertainty could cause anxiety or make it worse for both autistic and non-autistic people. What is less clear, however, is what uncertainty itself means for autistic people, and how this might be related to anxiety.
At the moment, intolerance of uncertainty is mostly measured through a self-report questionnaire, which does describe what kinds of uncertainties in life autistic people find problematic. Neither does it explore why people feel that way or what they do to manage uncertainties. The purpose of the current study, therefore, was to explore these questions through interviews. It was hoped that this would lead to a better understanding of how intolerance of uncertainty relates to anxiety for autistic people.

What did the researchers do?
We conducted interviews with autistic people, asking them how they understood, thought about, and experienced uncertainty. We then organized what they said into themes and analyzed them to see how they related to each other using a method called grounded theory. From this we created a theory of uncertainty and how it is experienced by autistic people, which we then shared with the interviewees to check whether it matched what they said.

What were the results of the study?
In our theory, we depicted uncertainty as different levels of unknowns. We identified three different levels of knowns. The first, the knowns, consisted of familiar things and routines in people’s lives. The second, known unknowns, consisted of situations in which things could be done to get-to-know what was not known. The third, unknown unknowns, included unexpected situations that people could not prepare for. We also identified that how much control people felt they had in an uncertain situation was important in deciding whether it was anxiety-provoking or not.

What do these findings add to what was already known?
It was already known that intolerance of uncertainty is problematic for autistic people and that it plays a role in anxiety, but it was unclear which type of uncertainty was particularly anxiety-provoking and why.

What are the potential weaknesses in the study?
We were only able to interview autistic people who communicate in spoken language. It would be good to find ways of including autistic people who are nonspeaking and those who may have a significant additional learning disability.

How will these findings help autistic adults now or in the future?
With this research, we hope to have helped develop a better understanding of the mental health needs of autistic people.

Publication Type:	Article
Additional Information:	This is the original submission version (pre-peer review) of the following article: Lennuyeux-Comnene, L., Yates, J. & Gaigg, S. B. (2024). What Is Uncertainty? A Grounded Theory of the Role of Uncertainty in Anxiety in Autism. Autism in Adulthood, which has now been formally published in final form at Autism in Adulthood at https://www.liebertpub.com/doi/10.1089/aut.2022.0085. This original submission version of the article may be used for non-commercial purposes in accordance with the Mary Ann Liebert, Inc., publishers’ self-archiving terms and conditions.
Publisher Keywords:	autism; anxiety; intolerance of uncertainty; uncertainty
Subjects:	B Philosophy. Psychology. Religion > BF Psychology R Medicine > RA Public aspects of medicine > RA0421 Public health. Hygiene. Preventive Medicine R Medicine > RC Internal medicine
Departments:	School of Health & Psychological Sciences School of Health & Psychological Sciences > Psychology
SWORD Depositor:	Symplectic Administrator

Export

Downloads