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The Neurodiversity of Grief: A social media study of neurodivergent experiences of grief and loss
- Ally Pax Arcari Mair
- Marina Gonzalez-Figueroa
- Doug McConachie
- Karen Goodall
- Karri Gillespie-Smith
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Description: Purpose: Little is known about neurodivergent experiences of grief and loss. As such, this study explored community-produced narratives of grief and loss, as (re)presented by neurodivergent individuals on social media. Methods: This study used qualitative content analysis to thematically explore public posts discussing grief and neurodivergence across 6 social media platforms, which were identified using a systematic search strategy. Results: 731 public posts were identified: Instagram (n=31), Reddit (n=256), TikTok (n=131), Tumblr (n=64), WordPress (n=103), X (n=58), and YouTube (n=88). Analysis of these posts highlighted key areas of support for wellbeing following a loss, as well as several risk and protective factors for neurodivergent individuals linked to five themes: 1) Oscillating Feelings and Social & Emotional Needs; 2) “I did it my way”; 3) Remembrance & Re-Grieving; 4) Understanding My Grief; 5) Grief “becomes a part of you”. Moreover, three separate content areas of interest, thematically linked as External(ised) vs. Internal(ised), were coded in the second iteration of analysis: 1) Experiencing Ableism; 2) Disordered Eating; 3) Substance Use. Conclusion: The analysis highlights the misunderstanding and disenfranchisement often experienced by grieving neurodivergent individuals across a range of different forms of loss, as well as observing a qualitatively distinct phenomenology of neurodivergent grief featuring key social and emotional challenges related to monotropism, ableism, remembrance, and communication. This study also highlights potential negative mental health impacts of autistic burnout and masking following a significant loss Implications for practice and future research are discussed.