University of Hertfordshire

By the same authors

Mothers’ Perspectives of Co-occurring Fatigue in Children with Autism Spectrum Disorders

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Original languageEnglish
Pages (from-to)209-226
Number of pages19
JournalFatigue: Biomedicine, Health & Behavior
Volume9
Issue4
DOIs
Publication statusPublished - 29 Nov 2021

Abstract

Background: Fatigue seems deeply associated with Autism Spectrum Disorders (ASD) as reflected by the preferred terms ‘autistic fatigue’ and ‘autistic burnout’. In ASD there is also a greater prevalence of sensory and cognitive demands, and medical conditions where persistent fatigue can be a symptom. This may contribute to some of the debilitating levels of fatigue evidenced, impacting on children with ASD and families.
Objective: As parents caring for a child with ASD experience high levels of stress this study aimed to provide a deeper understanding of the lived experiences of parenting a child with ASD with co-occurring fatigue.
Design: An interpretative phenomenological analysis was used to analyse semi-structured interviews from six mothers of children with ASD aged 4 to 19 who also had severe levels of co-occurring fatigue.
Results: Four superordinate themes were generated: The experience of fatigue; Making sense of their child’s fatigue; Managing fatigue; Accepting needs and limitations. Mothers developed understanding of their child’s fatigue, guiding their child to self-regulate. As mismanagement increased meltdowns and emotional outbursts, managing fatigue was perceived to be a key aspect of living with the phenomenon.
Conclusion: The findings reflect the impact of extreme fatigue on a child with ASD and families, supporting recent recommendations which state managing energy levels and reducing stressors is essential to prevent burnout in those with ASD and co-occurring fatigue. Better understanding, recognition and diagnosis would support parents, as would greater flexibility in schools to help children with ASD to better manage the demands of the school day.

Notes

© 2021 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/ by/4.0/).

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