Grief, Relief, and Belief: A Social Media Study on Late Identification of Neurodivergence
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| Title: | Grief, Relief, and Belief: A Social Media Study on Late Identification of Neurodivergence |
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| Language: | English |
| Authors: | Ally Pax Arcari Mair (ORCID |
| Source: | Autism: The International Journal of Research and Practice. 2026 30(5):1344-1359. |
| Availability: | SAGE Publications. 2455 Teller Road, Thousand Oaks, CA 91320. Tel: 800-818-7243; Tel: 805-499-9774; Fax: 800-583-2665; e-mail: journals@sagepub.com; Web site: https://sagepub.com |
| Peer Reviewed: | Y |
| Page Count: | 16 |
| Publication Date: | 2026 |
| Document Type: | Journal Articles Reports - Research |
| Descriptors: | Disability Identification, Self Concept, Grief, Psychological Patterns, Clinical Diagnosis, Adults, Attention Deficit Hyperactivity Disorder, Autism Spectrum Disorders, Burnout |
| DOI: | 10.1177/13623613261437916 |
| ISSN: | 1362-3613 1461-7005 |
| Abstract: | 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. |
| Abstractor: | As Provided |
| Entry Date: | 2026 |
| Accession Number: | EJ1503285 |
| Database: | ERIC |
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| Abstract: | 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. |
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| ISSN: | 1362-3613 1461-7005 |
| DOI: | 10.1177/13623613261437916 |
