The COVID-19 pandemic increased uncertainty and anxiety for most and was especially disruptive to autistic people and their families. Autistic children were particularly vulnerable due to their intolerance for increased uncertainty and disruption to their school and therapy support. This study aimed to investigate the effect that increased uncertainty had on autistic children, specifically their sensory behaviors and stress levels and on the stress levels of their primary caregivers. Parents and guardians of 47 autistic children completed an online survey consisting of questions investigating background and demographic information, their experiences during the first six months of the pandemic, information about the types of support that they were provided, and measures of intolerance of uncertainty (IUS-12) and sensory processing (SSP). Additionally, 10 primary caregivers participated in semi-structured interviews to explore in-depth accounts of their experiences and those of their children during the pandemic. Eighty nine percent of caregivers reported their children had significant sensory difficulties prior to the pandemic. We found that this majority group showed significant increases in sensory processing and intolerance of uncertainty from pre to during the first six months of the pandemic. Changes from pre to during the first six months of the pandemic were significantly correlated suggesting that as uncertainty increased, sensory processing ability decreased. Disruption to routines was significantly correlated with sensory processing and explained a significant portion of the variance in child, household, and parent stress. The themes found in interview responses including the relationship between sensory processing and uncertainty, living in "survival mode,"and unmasking reflect the quantitative findings, showing that the uncertainty introduced by disrupted routines increased sensory processing difficulty and typically autistic behaviors. These findings have implications for helping us to understand the relationship between uncertainty, sensory processing, and stress leading to better interventions and supports for this population. Additionally, primary caregivers noted the need for increased education and training for parents during therapy sessions and for a stronger community of primary caregivers to support the unique needs of these individuals and families.



College and Department

David O. McKay School of Education; Communication Disorders



Date Submitted


Document Type





autism, COVID-19, sensory processing, intolerance of uncertainty, routine disturbance