Key Readings on Late Identification of Neurodivergence π
Huang, Y., Arnold, S. R., Foley, K.-R., & Trollor, J. N. (2020). Diagnosis of autism in adulthood: A scoping review. Autism, 24(6), 1311β1327. https://doi.org/10.1177/1362361320903128
Lai, M.-C., & Baron-Cohen, S. (2015). Identifying the lost generation of adults with autism spectrum conditions. The Lancet Psychiatry, 2(11), 1013β1027. https://doi.org/10.1016/S2215-0366(15)00277-1
Leedham, A., Thompson, A. R., Smith, R., & Freeth, M. (2020). βI was exhausted trying to figure it outβ: The experiences of females receiving an autism diagnosis in middle to late adulthood. Autism, 24(1), 135β146. https://doi.org/10.1177/1362361319853442
Lupindo, B. M., Maw, A., & Shabalala, N. (2023). Late diagnosis of autism: exploring experiences of males diagnosed with autism in adulthood. Current Psychology, 42(28), 24181β24197. https://doi.org/10.1007/s12144-022-03514-z
Mair, A. P. A., Gonzalez-Figueroa, M., McConachie, D., Goodall, K., & Gillespie-Smith, K. (2026). Grief, Relief, and Belief: A Social Media Study on Late Identification of Neurodivergence. Autism, 30(5), 1344β1359. https://doi.org/10.1177/13623613261437916
Meldrum, P., Johnson, B. P., Lo, B. C. Y., Bedelis, M. L., & Rabba, A. S. (2026). βYou Become Yourself, Your Full Self, the True Selfβ: A Systematic Review of Neurodivergent Adultsβ Experiences of Identity Reconstruction Following Diagnosis of Autism and/or ADHD in Adulthood. Autism in Adulthood. https://doi.org/10.1177/25739581261427260
Chapman, R. (2020). The reality of autism: On the metaphysics of disorder and diversity. Philosophical Psychology, 33(6), 799β819. https://doi.org/10.1080/09515089.2020.1751103
Eco, U. (2015). How to Write a Thesis. The MIT Press.
Green, J., & Shaughnessy, N. (2023). Autistic phenomenology: past, present, and potential future. Frontiers in Psychology, 14. https://doi.org/10.3389/fpsyg.2023.1287209
OβHalloran, L., Coey, P., & Wilson, C. (2022). Suicidality in autistic youth: A systematic review and meta-analysis. Clinical Psychology Review, 93, 102144. https://doi.org/10.1016/j.cpr.2022.102144
Molina, N., Viola, M., Rogers, M., Ouyang, D., Gang, J., Derry, H., & Prigerson, H. G. (2019). Suicidal Ideation in Bereavement: A Systematic Review. Behavioral Sciences, 9(5), 53. https://doi.org/10.3390/bs9050053
Howard, K., Katsos, N., & Gibson, J. (2019). Using interpretative phenomenological analysis in autism research.Β Autism,Β 23(7), 1871-1876. https://doi.org/10.1177/1362361318823902
Moseley, R. L., Marsden, S. J., Pelton, M., Weir, E., Procyshyn, T., Allison, C. L., Parsons, T. A., Cassidy, S., Chikaura, T., Hodges, H., Mosse, D., Rodgers, J., Hall, I., Owens, L., Cheyette, J., Crichton, D., Hedley, D., & Baron-Cohen, S. (2026). βThe best way we can stop suicides is by making lives worth livingβ: a mixed-methods survey in the UK of perspectives on suicide prevention from the autism community. EClinicalMedicine, 103793. https://doi.org/10.1016/j.eclinm.2026.103793
MacLeod, A. (2019). Interpretative Phenomenological Analysis (IPA) as a tool for participatory research within Critical Autism Studies: A systematic review. Research in Autism Spectrum Disorders, 64(64), 49β62. https://doi.org/10.1016/j.rasd.2019.04.005
Moore, S., Amatya, D. N., Chu, M. M., & Besterman, A. D. (2022). Catatonia in autism and other neurodevelopmental disabilities: a state-of-the-art review. Npj Mental Health Research, 1(1), 1β10. https://doi.org/10.1038/s44184-022-00012-9
Meldrum, P., Johnson, B. P., Lo, B. C. Y., Bedelis, M. L., & Rabba, A. S. (2026). βYou Become Yourself, Your Full Self, the True Selfβ: A Systematic Review of Neurodivergent Adultsβ Experiences of Identity Reconstruction Following Diagnosis of Autism and/or ADHD in Adulthood. Autism in Adulthood. https://doi.org/10.1177/25739581261427260
Nolen-Hoeksema, S., & Davis, C. G. (2002). Positive responses to loss: Perceiving benefits and growth. In C. R. Snyder & S. J. Lopez (Eds.),Β Handbook of positive psychologyΒ (pp. 598β606). Oxford University Press.
Michael, C., & Cooper, M. (2013). Post-traumatic growth following bereavement: A systematic review of the literature.Β Counselling Psychology Review, 28(4), 18β33. https://doi.org/10.53841/bpscpr.2013.28.4.18
Powell, T., Gilson, R., & Collin, C. (2012). TBI 13 years on: factors associated with post-traumatic growth.Β Disability and rehabilitation,Β 34(17), 1461β1467. https://doi.org/10.3109/09638288.2011.644384
Golder, S., Ahmed, S., Norman, G., & Booth, A. (2017). Attitudes Toward the Ethics of Research Using Social Media: A Systematic Review. Journal of Medical Internet Research, 19(6), e195. https://doi.org/10.2196/jmir.7082
Fuchs, C. (2018). 'Dear Mr. Neo-N*zi, can you please give me your informed consent so that I can quote your fascist tweet?β: Questions of social media research ethics in online ideology critique. In G. Meikle (Ed.), The Routledge Companion to Media and Activism (1st ed., pp. 385β394). Routledge. https://doi.org/https://doi.org/10.4324/9781315475059
The Grief, Relief & Belief Cycle of Late Identification of Neurodivergence
I just had a study from my PhD published in Autism on late identification of neurodivergence. The 6 key take aways are:
Late identification of neurodivergence causes a reframing of one's sense of self, following a Grief, Relief & Belief Cycle.
You may grieve for your younger self and the life you feel you could have had had your neurodivergence been identified earlier and the right support put in place.
There is a sense of relief which comes from a new self-understanding and the belief that you are "not broken".
Self-belief comes in being grateful for who you are and relinquishing feelings of shame for the things which make you you.
You may oscillate between these feelings of grief, relief, and self-belief. It is okay to feel good and bad about this, it is a complex thing to come to terms with.
Β Post-diagnosis burnout is a real thing many people report experiencing. It takes a lot to get a diagnosis, it makes sense to feel drained after all that work.
Mair, A. P. A., Gonzalez-Figueroa, M., McConachie, D., Goodall, K., & Gillespie-Smith, K. (2026). Grief, Relief, and Belief: A Social Media Study on Late Identification of Neurodivergence. Autism.Β https://doi.org/10.1177/13623613261437916
Diagnostic pathways often implicitly (or explicitly) frame late identification of neurodivergence as a singular moment or the terminal component of a service, rather than an ongoing process or a first step. As a grief researcher, I know this is all too common with significant losses, where we lose something important to and defining of who we are as a person: people view grief as a moment, rather than an ongoing process without an endpoint. In the same way we learn to live with grief rather than overcome it, learning to live with massive, (re)defining moments which may disrupt and alter who we think we are is not just the moment where we identify neurodivergence, but an ongoing process before, during, and after a late identification of neurodivergence. Late identification of neurodivergence here refers to identification of neurodivergence in adulthood, either by clinical diagnosis of conditions like autism, ADHD, dyspraxia, etc., or via self identification with one or more of these ways of being.
Following late identification of neurodivergence, many people experience a complex mix of grief, relief, and (self-)belief, as they reframe their lives and sense of self. We have referred to this as the Grief, Relief & Belief Cycle, which is an ongoing and interconnected process where you may shift between states of feeling grief (e.g. for the life you feel you could have had if your neurodivergence had been identified and appropriately supported in childhood), relief (e.g. some people may have felt shame for specific traits before identification, which they start to view positively and/or with a greater sense of compassion as a result of the new self-understanding afforded by identification of neurodivergence), and belief (e.g. people may feel a sense of gratitude for who they are and relinquish a previously held sense of shame).
Diagnostic pathways and in-depth self-discovery are also incredibly demanding, draining, and sometimes traumatic things; post-diagnosis burnout was an experience observed by many in this study. It makes sense to be exhausted by this process and it makes sense that all the demands which go into obtaining a diagnosis may contribute to, trigger, or worsen experiences of autistic burnout.
If this Grief, Relief, & Belief cycle and/or the experience of post-diagnosis burnout resonates with you, you're not alone. I have often seen late identification portrayed as a moment of celebration (e.g. I have seen many a cake to celebrate an autism diagnosis), and it absolutely is a moment worthy of celebration. However, it is also perfectly okay and perfectly normal to have mixed feelings about it, to grieve for your younger self and the life you feel you could have had with the right support, to feel gratitude for this new sense of self-understanding, and so on.Β
The first study from my PhD, a systematic review exploring grief and loss in the context of neurodivergence, is now published and available in the Review Journal of Autism and Developmental Disorders π
"Four main themes and an overarching theme, titled Recognise the Unrecognised, emerged: Hidden Grief, Supported and Included, Understanding My Loss, and The Double Taboo of Death and Disability. The results indicate that grief often goes unrecognised in individuals with NDDs, especially following non-death losses."
This systematic review explores lived experiences of grief in the context of neurodevelopmental disorders (NDDs), considering mental health
Kicking myself. I'm usually pretty good at finding resources and info, but I cannot for the life of me locate The Thing I'm looking for!
Is anyone familiar with this neurodiverse access needs workbook thing that had spider graphs and and whatnot where you could basically write up a user manual for recognizing your triggers, how to best support you during meltdowns/shutdowns, etc? I'm almost positive it was either free or pay-as-you-can for a printable file. I apparently don't have it saved fucking ANYWHERE
ahoy there, yes that's me! you can order a physical copy of this here or get a digital copy for free/pay-what-you-can here. i really hope it is useful for you and that you have a lovely day :)
you can buy a printed version in the US here (sorry, i realise the last link for this was just for the uk). or you can download a pdf which you can print out to have a physical copy for free/pay-what-you-can here. i hope this helps :)
Kicking myself. I'm usually pretty good at finding resources and info, but I cannot for the life of me locate The Thing I'm looking for!
Is anyone familiar with this neurodiverse access needs workbook thing that had spider graphs and and whatnot where you could basically write up a user manual for recognizing your triggers, how to best support you during meltdowns/shutdowns, etc? I'm almost positive it was either free or pay-as-you-can for a printable file. I apparently don't have it saved fucking ANYWHERE
ahoy there, yes that's me! you can order a physical copy of this here or get a digital copy for free/pay-what-you-can here. i really hope it is useful for you and that you have a lovely day :)
WOW! 2700+ downloads of My Neurodivergent Passport!
I just wanted to thank you all for your support with this. As of this moment My Neurodivergent Passport has been downloaded 2706 times, and 4 people have even ordered a printed version too! It's just so amazing! I am immeasurably grateful for the kind reception you have all given this resource.
For anyone new here, My Neurodivergent Passport is Β a tool to communicate your needs, strengths, and sensory/communication profiles.
You can get a printed version of My Neurodivergent Passport! You can buy it here!
I want this to be accessible to all who want and need it, so it is available for free on my blog. The resource is up as pay what you can, but you are more than welcome to just use it for free.
A wee update with some exciting news aboutΒ My Neurodivergent Passport: a tool to communicate your needs, strengths, and sensory/communication profiles.
Following some feedbackΒ the passport has been updated.
You can now get a printed versionΒ of My Neurodivergent Passport!Β You can buy it here!
I have designed a passport for neurodivergent individuals to communicate their abilities, needs, and strengths. It also letβs you show your own sensory and communication profiles.
It is a really simple tool with 23 personalisable pages. You can get it for free as a PDF on my blog (if you really like it, feel free toΒ buy me a coffee if you want). A printed version is coming soon!
Culture is so obsessed with the idea of lone geniuses that it doesn't really appreciate that most of the progress of science (and likely every other discipline) occurs collaboratively, in babysteps, and usually through a lot very tedious, utterly unsexy, work.
These are the resources I took from my bookmark folder I made like months ago when I wanted to learn R butβ¦ I didnβt π Got distracted with other languages! Anyhoo here are some resources plus some new ones I found!
Websites
R-Bloggers R Tutorials - LINK
Stat Method R Tutorials - LINK
W3School - LINK
Tutorialspoint - LINK
Guru99 - LINK
R-Exercises - LINK
Code-School - LINK
R for Data Science - LINK
Dataquest - LINK
Books (PDF)
The Art Of R Programming - LINK
A First Course In Statistical Programming With R - LINK
The Book Of R - LINK
R Programming For Data Science - LINK
R For Beginners - LINK
R Programming [Tutorialspoint] - LINK
Hands-on Programming With R - LINK
YouTube Videos
R Programming Tutorial for Beginners - LINK
R Programming Basics - Data Science and Machine Learning Tutorial - LINK
Introduction to R for Data Science - Data Analysis - LINK
R Programming for Data Science - Full Course - LINK
R Programming Tutorial for Beginners (Simplilearn) - LINK
[image id: poster titled " Autism & Transitions: why is it so hard?β. Beneath the title there is a scattered range of words on a purple background written in Open Dyslexic font describing the difficulties of transition. Full transcript and acronyms in full below the cut.]
Boom & Bust (i.e. over-extending our energy on good days, and then needing time to recover following this)
Change in Routine
Hyperfocus
Control (e.g. the need for control and certainty, and the lack of it which may occur during transitions)
Lack of Support
Navigating New Settings
Social Demands
The Unknown
Attention (e.g. difficulty shifting our attention from one task to the next)
Executive Dysfunction
Autistic Burnout
Uncertainty
Autistic Monotropism (i.e. the tendency for our interests to be intense and very focused, so their is difficulty to step back from these and shift to a new task)
Inappropriate Support
Masking
Sensory Demands
Interest (or lack thereof)
Context (e.g. difficulty navigating new contexts or understanding what to do in a new context)
PDA (i.e. Pathological Demand Avoidance or Persistent Drive for Autonomy)
