Neither Here Nor There: Living in the Emotional Limbo of Autism Diagnosed in Adulthood
- Sophie Longley, MSc
- 10 hours ago
- 6 min read
Written by Guest Writer - Sophie Longley, MSc
When I received my autism diagnosis, I didn't know whether to cry or exhale. So I did both. I sat with something I couldn't name -Â a feeling that was grief and relief at once, so tangled together I couldn't tell where one ended and the other began.
That experience brought up more questions than answers. So I decided to research it as part of my MSc in Psychology. Specifically, how autistic adults diagnosed later in life piece together their past, their identity, and look towards the future.
One participant invented a word that encompasses this complex emotional landscape: grelief - a combination of grief and relief. Coined because no existing word could hold both things at once. It captures something psychology has been slow to recognise: that for autistic adults diagnosed later in life, these two emotions don't arrive one after the other. They arrive simultaneously and for many, they never fully resolve.
The Liminal Space: Diagnosis of Autism in Adulthood
A later in life autism diagnosis doesn't arrive into an empty life waiting to be integrated. It arrives into a life already fully formed and reinterprets it from the ground up. What emerged across all participants, regardless of how recently or how long ago they had been diagnosed, was something I came to think of as enduring liminality.
Liminality, a concept developed by Victor Turner (1969), describes the state of being between two identities. Neither fully what someone was nor yet fully what they are becoming. For Turner, liminality was temporary -Â a phase you pass through, not a place you live. This did not mirror what my participants experienced. They were living in the in-between.
One participant, Mary*, had been diagnosed for 21 years at the time of our interview. She still described her experience as a "massive reprocessing" that doesn't stop, still feeling simultaneously free and trapped.
Caught between the possibilities her diagnosis opened up and the ways a label can also constrain. This is what Starr (2024) describes as chronic liminality: an enduring condition found across marginalised populations, characterised as the ongoing labour of existing in identity uncertainty, marked by "instability, contradiction, and unpredictability."
The Grief That Follows
The grief that follows an autism diagnosis doesn't always look like what we expect:
Identity dissolution:Â the collapse of a self constructed without the knowledge of being autistic
Counterfactual mourning: grieving not what was lost but what can never be known.
One participant, Lucy*, grieved whether she would have received multiple mental health diagnoses had she known she was autistic earlier in life. A question with no answer.
The permanence of diagnosis:
Elaine* felt euphoria immediately after diagnosis, then depression as the irreversibility settled in. Her grief didn't replace her relief; it coexisted with it.
As a coach working with autistic and AuDHD people, this grief is often the last thing clients expect. They arrive wanting a path forward -Â reasonable adjustments at work, tools, strategies. But a few sessions in, they discover they are grieving an identity not yet fully realised. Part of my work is helping them understand that both things can be true simultaneously: working towards a more authentic life while accepting that some things have been lost.Â
Relief Reframed
The relief, when it comes, is more layered than it first appears. Previous research notes that diagnosis provides permission to meet needs (Leedham et al., 2020), engage in self-care (Wilson et al., 2023), and seek support (Punshon et al., 2009). My research suggests this permission operates at three levels:
Medical:Â formal acknowledgment that differences are real and legitimate (the diagnostic report)
Social:Â the legitimacy to claim difference and request accommodations
Self-permission:Â the internal authorisation to stop performing neurotypicality altogether
Jane* put it clearly: diagnosis allowed her to be "more authentic as to who I am, and not as I've spent most of my lifetime pretending to be someone else."
Julia* felt "utterly vindicated" -Â implying years of being doubted, with the diagnosis as the formal confirmation she had been denied.
But permission doesn't undo the decades that came before it. The relief and the grief weren't separate. They were the same moment, looked at from two directions. That's what grelief means, and it's why the liminal space doesn't resolve with a diagnostic report.
Rethinking Post-Diagnostic Support
Most post-diagnostic support assumes a destination: acceptance, then resolution, then integration. Both professionally and personally, I have yet to witness this linear process following an autism diagnosis. Support aimed at moving people through the liminal space will consistently miss the mark or worse, it risks pathologising a meaningful psychological process. So what might more fitting support look like?
Therapeutic approaches that hold contradiction rather than resolve it
Peer support that creates shared reflection and belonging, often absent post-diagnosis
Neuro-affirming coaching that is able to hold the questions that are easy to sidestep: Who am I now? What do I value? What do I do with a past that looks different from this new vantage point? while also offering practical support around executive functioning and psychoeducation.Â
Late-diagnosed autistic adults are not a population in need of adjustment. They are a population engaged in profound, ongoing identity work — work that deserves frameworks sophisticated enough to hold it.
*All participant names are pseudonyms.
About The Author:
Sophie Longley (she/her) is an autistic coaching psychology practitioner supporting late-identified neurodivergent adults through identity reconstruction and values-aligned living. She brings lived experience and a neuro-affirming approach to her practice, helping clients build lives grounded in authenticity rather than deficit.
Her postgraduate research introduced the concept of "grelief" and the framework of enduring liminality, illuminating the often unsupported space that follows a late autism diagnosis. She continues to advance this conversation through workshops and talks, and is a committed advocate for autistic-led research, working across UK universities on co-production projects.
Sophie is a published writer, contributing to The Psychologist, and holds an MSc in Psychology from the University of Sussex and training in Existential Coaching from the New School of Psychotherapy and Counselling. She is a member of the European Mentoring and Coaching Council and British Psychological Society.
Book a 20 minute intro call for coaching with Sophie here:
This article is part of True North Psychology's commitment to providing accessible, evidence-based information about neurodiversity. All content is for educational purposes and should not replace professional medical advice.
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References
Leedham, A., Thompson, A. R., Smith, R., & Freeth, M. (2020). ‘I was exhausted trying to figure it out’: The experiences of females receiving an autism diagnosis in middle to late adulthood. Autism, 24(1), 135-146.Â
Longley, 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. https://doi.org/10.31234/osf.io/yf8xj_v1
Punshon, C., Skirrow, P., & Murphy, G. (2009). The not guilty verdict: psychological reactions to a diagnosis of Asperger syndrome in adulthood. Autism : the international journal of research and practice, 13(3), 265–283. https://doi.org/10.1177/1362361309103795
Starr, R. J. (2024). Existential liminality: A theoretical investigation into identity disruption and transitional states. https://doi.org/10.13140/RG.2.2.25369.89446
Turner, V. (1969). The ritual process: Structure and anti-structure. Aldine Publishing.
Wilson, R. B., Thompson, A. R., Rowse, G., Smith, R., Dugdale, A. S., & Freeth, M. (2023). Autistic women's experiences of self-compassion after receiving their diagnosis in adulthood. Autism, 27(4), 1029–1042.