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

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        Author
        Keville, Saskia
        Meek, Charlotte
        Ludlow, Amanda
        Attention
        2299/25316
        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.
        Publication date
        2021-11-29
        Published in
        Fatigue: Biomedicine, Health & Behavior
        Published version
        https://doi.org/10.1080/21641846.2021.2008169
        License
        http://creativecommons.org/licenses/by/4.0/
        Other links
        http://hdl.handle.net/2299/25316
        Relations
        School of Life and Medical Sciences
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