“Grelief- it is a combination of grief and relief": An Interpretative Phenomenological Analysis of Women's Experiences Following an Autism Diagnosis in mid-late adulthood.
This publication is included in the Autistic Autism Scholarship Project. one author of this publication is identified as autistic in the project.
About the autistic author markerLongley, S. L., Anns, S., & Farsides, T. (2025). “Grelief- it is a combination of grief and relief": An Interpretative Phenomenological Analysis of Women's Experiences Following an Autism Diagnosis in mid-late adulthood [Preprint]. Center for Open Science. https://doi.org/10.31234/osf.io/yf8xj_v1
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Abstract
Autism diagnoses among adults have risen markedly over the past decade, with women increasingly identified later in life. Many autistic women remain undiagnosed until mid-late adulthood due to gendered diagnostic biases, camouflaging behaviours, and internalised coping strategies. Although existing research highlights grief and relief following diagnosis, little is known about how these emotions coexist and evolve over time. This study explores how autistic women diagnosed in mid-late adulthood make sense of their diagnosis and navigate the ‘in-between space' receiving an autism diagnosis and beyond. Using Interpretative Phenomenological Analysis (IPA), semi-structured interviews were conducted with five (n =5) autistic women aged 38–76 years who received a clinical autism diagnosis after age 30. The first author, a late-diagnosed autistic researcher, adopted a reflexive, lived-experience approach. Interviews were transcribed verbatim and first analysed ideographically, generating individuals’ Personal Experiential Themes, and then at a sample level to obtain Group Experiential Themes. Three sample-level themes were identified: Identity Grief and Missed Opportunities, Relief as Permission and Empowerment, and Living in the Liminal Space. Participants described profound grief for lost or misunderstood identities alongside significant relief through validation and self-understanding. These emotions were not sequential but coexisted dynamically, reflecting an enduring state of liminality - a simultaneous experience of loss and liberation persisting years after diagnosis. Receiving an autism diagnosis in mid-late adulthood may create a sustained liminal identity state in which grief and relief coexist as interdependent processes rather than stages of adjustment. Post-diagnostic support should recognise this enduring complexity, validating the coexistence of contradictory emotions as a normal and meaningful part of identity reconstruction rather than a failure to adapt to an autism diagnosis.
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