Grief, Relief, and Belief: A Social Media Study on Late Identification of Neurodivergence

Little is known as to what drives feelings of grief and relief observed following the late identification of neurodivergence, and its significance as it relates to sense of self and self-understanding. As such, this study considers how grief is understood and experienced by neurodivergent individuals in the context of late identification. This study used qualitative content analysis to identify themes from 225 public social media posts discussing grief and relief in relation to a late identification. With a sample focused mainly on autism, attention deficit hyperactivity disorder, and both co-occurring, four main themes, under an overarching theme and process, titled the Grief, Relief, and Belief Cycle, were identified: (1) The Life I Could Have Had; (2) Grieving for My Younger Self; (3) Feeling Gratitude; and (4) Post-Diagnosis Burnout. Overall, this study calls for a paradigm shift in how we understand and support neurodivergent individuals diagnosed in adulthood, seeing diagnosis as a first step, rather than a terminal component of a service, emphasising the need for comprehensive, individualised, wraparound care that addresses the emotional and practical aspects of their lives before, during, and beyond diagnosis.Lay AbstractLittle is known as to why some individuals may experience feelings of grief and relief following late identification, by clinical diagnosis or self-identification, of neurodivergence (e.g. autism or attention deficit hyperactivity disorder), and how this relates to their sense of self. This study looks at how grief is understood and experienced by late-identified neurodivergent individuals using qualitative content analysis to analyse social media posts discussing grief in relation to late identification. A total of 225 public social media posts were analysed. These posts were mostly made by people who identified as autistic, having attention deficit hyperactivity disorder, or both. Four main themes and one overarching theme and process were identified. The overarching theme was named the Grief, Relief, and Belief Cycle, and the four themes were (1) The Life I Could Have Had; (2) Grieving for My Younger Self; (3) Feeling Gratitude; and (4) Post-Diagnosis Burnout. Theme 1 highlights the sense of loss and regret some late-identified neurodivergent individuals' experience. Theme 2 explores the ways in which late identified neurodivergent individuals look at their past experiences with this newfound understanding of their neurodivergence. Theme 3 highlights the experiences of relief and gratitude these individuals have for the self-understanding that they discuss coming with their diagnosis. Theme 4 emphasises the intense emotional and physical toll and lack of available support that people can experience when their neurodivergence is identified later in life. Overall, this study emphasises the need for comprehensive, individualised, and ongoing care that addresses the emotional and practical aspects of individuals' lives before, during, and beyond diagnosis.