How autistic adults experience bereavement: an interpretative phenomenological study

Bereavement is a stressful life event that disrupts a person’s world on relational, practical, and spiritual levels. The aim of this study is to elucidate what it is like for autistic individuals, who characteristically desire predictability and continuity, to experience the death of a loved one. Individual in-depth interviews were conducted with 5 autistic adults and the transcripts analysed using Interpretative Phenomenological Analysis. Four inter-related group experiential themes are presented: ‘Impacts of change, loss and uncertainty’, ‘Marginalisation: the sociocultural context of autistic grief’, ‘Adapting to change and loss: meaning and connection’, and ‘Stories and scripts: making sense of it all’. Consistent with existing grief literature, participants’ grief reactions included affective, physiological, cognitive, and behavioural changes and were individual and varied with each loss. Participants also reported autism related grief reactions such as changes in sensory processing, increased masking, and an increase in autistic inertia, shutdown, and meltdown. The findings provide preliminary data on how the demands of bereavement, including the burden of minority stress, may increase the risk of autistic burnout for autistic survivors. Bereavement instigated a narrative reconstruction of the autistic survivors’ life stories and identities. This process was social, including talking about the deceased, reflecting on their biography and legacy, and creating a sense of continued connection and relationship with the deceased in their ongoing lives. The findings are discussed in relation to extant literature and implications for psychotherapy and Counselling Psychology are raised.