Mothers’ perspectives of co-occurring fatigue in children with autism spectrum disorders

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 4–19 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.