How does ‘autistic burnout’ feel? A qualitative study exploring experiences of earlier and later-diagnosed autistic adults

Authors

Abstract

‘Autistic burnout’ is increasingly conceptualised as an experience of severe exhaustion, increased sensory difficulties and need for solitude, resulting from not having needs met across contexts. We interviewed 20 autistic adults (eight diagnosed with autism in childhood) about their experiences of autistic burnout. In this reflexive thematic analysis, we focused on how burnout felt, comparing the experiences of those diagnosed in childhood versus adulthood. We created five themes. We understood burnout to be, at times, (1) a powering down and/or (2) the overactivation, of the mind and body, resulting in (3) a craving for sensory and social rest. For those diagnosed in adulthood, burnout seemed to be experienced as more chronic and confusing. Some participants diagnosed in adulthood (4) made the world more bearable by using substances, coping with the contributors to and effects of burnout. Especially affecting those diagnosed in adulthood, (5) not knowing why this was happening took a (sometimes dangerous) toll; for a few, it led to contemplating suicide. This study brings new insights into burnout experiences of adults diagnosed with autism at different life points. Lay abstract Some autistic people experience severe exhaustion as a result of not having their needs met that sometimes prevents them from being able to take part in daily life. Some people refer to this as ‘autistic burnout’. In this study, we spoke to 20 autistic adults, eight of whom were diagnosed with autism in childhood. We analysed our participants’ interviews through an approach called reflexive thematic analysis. Through this process, we created five themes around the question of how autistic burnout felt for these participants. We were also interested in how participants diagnosed with autism in childhood versus in adulthood described their burnout experiences. This is because research has shown that not having an autism diagnosis earlier in life could, indirectly, lead to not understanding one’s own needs accurately and not having the right support from others. The five themes we created were (1) the powering down of the mind and body, (2) the overactivation of the mind and body, (3) craving social and sensory rest, (4) making the world more manageable by using substances and (5) not knowing why this is happening to you can take a (sometimes dangerous) toll. Themes 1, 2 and 3 seemed to be shared between participants regardless of age at autism diagnosis. However, these experiences seemed to be more disabling for participants diagnosed in adulthood. Themes 4 and 5 related particularly to those diagnosed with autism in adulthood. This study adds an important insight: perspectives on burnout experiences from adults diagnosed with autism at different life points.

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