What Is Uncertainty? A Grounded Theory of the Role of Uncertainty in Anxiety in Autism

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.

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.

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.

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.