Caregiver perspectives on the impact of uncertainty on the everyday lives of autistic children and their families.
Jane Goodwin, Priyanka Rob, Mark Freeston and 8 others
PMID 34291688WHAT IT FOUND
Parents of autistic children described school and routine changes as major sources of anxiety.
Children reacted with repetitive questions, shutdowns or avoidance, leading to missed education and social opportunities. Parents managed this through extensive preparation, reassurance and family accommodation.
Key findings
01School-related situations, including changes in routine, different teachers and tests, were the most commonly identified triggers for anxiety and intolerance of uncertainty.
02Children reacted to uncertainty with increased repetitive behaviours and questions, distress that could lead to 'shutdown' where they lost the ability to speak or process information, and avoidance strategies like feigning illness.
03Parents reported significant personal impact, including exhaustion, frustration and sadness, driven by the need to constantly prepare for, reassure during, and debrief after uncertain situations.
STILL TO COME
How it was doneWhat they foundWhat it means for OTsWhat it means for SLPs
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What it does not show
The study relies entirely on parent perspectives; children were not interviewed, so their own experience of uncertainty is not captured. Participants were recruited from NHS treatment-seeking populations, which may not represent autistic children who do not access services. Families with children who have moderate to profound intellectual disability were excluded. The sample included few fathers (1 father, 2 mother and father pairs) and one grandmother, limiting the generalisability of the parenting impact findings across all caregiver types.
Declared interests
Three authors (Professor J.R., Dr C.W., and Professor M.F.) developed the CUES programme, which was the subject of the larger trial from which these data were drawn. The study was funded by Autistica, a charity.
The easy way to misread this
Do not interpret the children's avoidance or repetitive behaviours as simple non-compliance or habit. The study indicates these are coping mechanisms for intolerance of uncertainty and anxiety, and they serve a function (reducing distress) that must be addressed before the behaviour can be changed.