A Diagnosis Buried in the Closet: How Autistic People Learn of Their Autism Diagnoses

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 marker

Metadata sources used for this reference

OpenAlex Crossref
Learn more about the sources used

Lee, D., Ryu, I., Kwon, J., Yoon, w. h., Yoo, H. J., & Kim, S. Y. (2026). A Diagnosis Buried in the Closet: How Autistic People Learn of Their Autism Diagnoses. Autism in Adulthood. https://doi.org/10.1177/25739581261472708

Publication date: 17 Aug 2026 Added to AutiHub: 21 Aug 2026 Type: Article Article language: English
Publisher source (DOI) OpenAlex source

This publication is integrated into AutiHub through:

Authors

Publication authors
6
Publication authors identified as autistic
1 / 6 (16.7%)
  1. Dakyeom Lee
  2. Insuk Ryu
  3. Joonheon Kwon
  1. wn-ho Yoon *
  2. Hee Jeong Yoo
  3. So Yoon Kim

Abstract

Background: Learning that one is autistic can be a pivotal turning point in self-understanding, but autistic people learn of this information under highly variable conditions. How these disclosure conditions shape autistic people’s experiences of learning and making sense of the diagnosis remains underexamined, particularly for those who received an autism diagnosis in childhood but learned about it later, and in non-Western contexts. Methods: We conducted semi-structured qualitative interviews with 22 formally diagnosed autistic adults in South Korea from two diagnostic pathways (11 self-initiated diagnosis in adolescence/adulthood; 11 received a childhood diagnosis and learned about it later). Among participants who received a childhood diagnosis, disclosure conditions varied, with some receiving direct disclosure and others learning about the diagnosis unexpectedly (e.g., through records hidden in the closet). We conducted one-on-one interviews and analyzed the data using reflexive thematic analysis. Results: The analysis suggested that core themes transcended diagnostic pathways. Participants described learning of the diagnosis as an identity-relevant turning point marked by mixed emotions, shifting from self-blame toward more coherent self-understanding while also experiencing grief about time spent not knowing. Disclosure contexts, including epistemic positioning, interpretive support for connecting the medical label to everyday life, and prior understanding of autism, shaped whether the diagnosis became valuable self-knowledge or a source of stigma. Participants’ accounts indicated that supportive disclosure involves framing autism without stigma or idealization, balancing timing with stigma risk and developmental readiness, prioritizing trust and rapport, and providing follow-up support. Conclusion: The findings highlight the importance of autistic people knowing their diagnosis to support positive, self-determined identity development, as well as directly disclosing the diagnosis as information autistic people are entitled to know. We need more efforts to develop neuro-affirming training for parents and professionals to share a diagnosis in ways that support self-understanding, alongside broader stigma-reduction efforts in South Korea.

Bibliography cited by this reference

Cited references are imported from external metadata sources when they are available. The list may be partial.

Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 12 Sep 2026 07:09.

Cited references
53
With a DOI
49
Without a DOI, from raw bibliography text
4
6 / 53 (11.3%) cited references include at least one author identified as autistic.
References with data to complete
0 / 53 (0.0%)
References with detected author names
53 / 53 (100.0%)
Without detected author names
0
Without a structured title
0
Without a stable identifier
4
References with raw author names still to review
0
References with external metadata lookup issues
0
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
157
From DOI or external metadata
157
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
0
62 / 157 (39.5%) names are linked to an author already present in AutiHub. 95 / 157 (60.5%) names are not yet linked.
Names linked to a person identified as autistic
7 / 157 (4.5%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 7 / 62 (11.3%). Distinct people identified as autistic: 6 / 131 (4.6%).
  1. Stephanie K. Kim , Lupita H. R. Kim (2012). The Need for Multicultural Education in South Korea . In The Immigration & Education Nexus (pp. 243-251). SensePublishers.
    Type: Book chapter DOI: 10.1007/978-94-6091-820-9_15 OpenAlex: https://openalex.org/W197261016
    Crossref OpenAlex
  3. Roy Richard Grinker , Kyungjin Cho (2013). Border Children: Interpreting Autism Spectrum Disorder in South Korea . Ethos, 41(1), 46-74. Wiley.
    Type: Article DOI: 10.1111/etho.12002 OpenAlex: https://openalex.org/W1813269889
    Crossref OpenAlex
  4. Catherine D. Tan (2018). “I'm a normal autistic person, not an abnormal neurotypical”: Autism Spectrum Disorder diagnosis as biographical illumination . Social Science & Medicine, 197, 161-167. Elsevier BV.
    Type: Article DOI: 10.1016/j.socscimed.2017.12.008 OpenAlex: https://openalex.org/W2774655211
    Crossref OpenAlex
  5. Virginia Braun , Victoria Clarke (2006). Using thematic analysis in psychology . Qualitative Research in Psychology, 3(2), 77-101. Informa UK Limited.
    Type: Article DOI: 10.1191/1478088706qp063oa OpenAlex: https://openalex.org/W1979290264
    Crossref OpenAlex
  6. Aoife Hickey , Jason Crabtree , Joshua Stott (2018). ‘Suddenly the first fifty years of my life made sense’: Experiences of older people with autism . Autism, 22(3), 357-367. SAGE Publications.
    Type: Article DOI: 10.1177/1362361316680914 OpenAlex: https://openalex.org/W2588184259
    Crossref OpenAlex
  7. Roisin Finnegan , Tim Trimble , Jonathan Egan (2014). Irish parents' lived experience of learning about and adapting to their child's autistic spectrum disorder diagnosis and their process of telling their child about their diagnosis . The Irish Journal of Psychology, 35(2-3), 78-90. Informa UK Limited.
    Type: Article DOI: 10.1080/03033910.2014.982143 OpenAlex: https://openalex.org/W1994825145
    Crossref OpenAlex
  8. Alexandra Leedham , Andrew R. Thompson , Richard Smith , Megan Freeth (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. SAGE Publications.
    Type: Article DOI: 10.1177/1362361319853442 OpenAlex: https://openalex.org/W2947577397
    Crossref OpenAlex
  9. C. Punshon , P. Skirrow , Glynis Murphy (2009). The `not guilty verdict' . Autism, 13(3), 265-283. SAGE Publications.
    Type: Article DOI: 10.1177/1362361309103795 OpenAlex: https://openalex.org/W2030351972
    Crossref OpenAlex
  10. Weronika Superson , Anna Prokopiak , Maciej Wodziński (2025). Experiences of an Autism Diagnosis in Adulthood: The Role of Grassroots Epistemology in Clinical Settings . Journal of Clinical Medicine, 14(12), 4315. MDPI AG.
    Type: Article DOI: 10.3390/jcm14124315 OpenAlex: https://openalex.org/W4411377428
    Crossref OpenAlex
  11. Lydia Jones , Lorna Goddard , Elisabeth L. Hill , Lucy A. Henry , Laura Crane (2014). Experiences of Receiving a Diagnosis of Autism Spectrum Disorder: A Survey of Adults in the United Kingdom . Journal of Autism and Developmental Disorders, 44(12), 3033-3044. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-014-2161-3 OpenAlex: https://openalex.org/W2032693111
    Crossref OpenAlex
  12. Ingrid Kiehl , Ruby Pease , Corinna Hackmann (2024). The adult experience of being diagnosed with autism spectrum disorder: A qualitative meta-synthesis . Autism, 28(5), 1060-1074. SAGE Publications.
    Type: Article DOI: 10.1177/13623613231220419 OpenAlex: https://openalex.org/W4391880189
    Crossref OpenAlex
  13. Christina D. Kang-Yi , Roy R. Grinker , DAVID S. MANDELL (2013). Korean Culture and Autism Spectrum Disorders . Journal of Autism and Developmental Disorders, 43(3), 503-520. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-012-1570-4 OpenAlex: https://openalex.org/W2057766188
    Crossref OpenAlex
  14. Laura Crane , Richard Batty , Hanna Adeyinka , Lorna Goddard , Lucy A. Henry , Elisabeth L. Hill (2018). Autism Diagnosis in the United Kingdom: Perspectives of Autistic Adults, Parents and Professionals . Journal of Autism and Developmental Disorders, 48(11), 3761-3772. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-018-3639-1 OpenAlex: https://openalex.org/W2808369589
    Crossref OpenAlex
  15. Jaci C. Huws , Robert S. P. Jones (2008). Diagnosis, disclosure, and having autism: An interpretative phenomenological analysis of the perceptions of young people with autism . Journal of Intellectual & Developmental Disability, 33(2), 99-107. Informa UK Limited.
    Type: Article DOI: 10.1080/13668250802010394 OpenAlex: https://openalex.org/W2072336624
    Crossref OpenAlex
  16. Matthew de Broize , Kiah Evans , Andrew Whitehouse , John Wray , Valsamma Eapen , Anna Urbanowicz (2022). Exploring the Experience of Seeking an Autism Diagnosis as an Adult . Autism in Adulthood, 4(2), 130-140. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2021.0028 OpenAlex: https://openalex.org/W4200092124
    Crossref OpenAlex
  17. Havi Carel , Ian James Kidd (2014). Epistemic injustice in healthcare: a philosophial analysis . Medicine, Health Care and Philosophy, 17(4), 529-540. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s11019-014-9560-2 OpenAlex: https://openalex.org/W2095154224
    Crossref OpenAlex
  19. John Heritage , Geoffrey Raymond (2005). The Terms of Agreement: Indexing Epistemic Authority and Subordination in Talk-in-Interaction . Social Psychology Quarterly, 68(1), 15-38. SAGE Publications.
    Type: Article DOI: 10.1177/019027250506800103 OpenAlex: https://openalex.org/W2103448772
    Crossref OpenAlex
  20. Hannah Gellini , Magda Marczak (2024). “I Always Knew I Was Different”: Experiences of Receiving a Diagnosis of Autistic Spectrum Disorder in Adulthood—a Meta-Ethnographic Systematic Review . Review Journal of Autism and Developmental Disorders, 11(3), 620-639. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s40489-023-00356-8 OpenAlex: https://openalex.org/W4321435731
    Crossref OpenAlex
  21. Laura Crane , James W Chester , Lorna Goddard , Lucy A Henry , Elisabeth L. Hill (2016). Experiences of autism diagnosis: A survey of over 1000 parents in the United Kingdom . Autism, 20(2), 153-162. SAGE Publications.
    Type: Article DOI: 10.1177/1362361315573636 OpenAlex: https://openalex.org/W2118478153
    Crossref OpenAlex
  22. Yunhe Huang , Samuel R. C. Arnold , Kitty-Rose Foley , Julian Trollor (2020). Diagnosis of autism in adulthood: A scoping review . Autism, 24(6), 1311-1327. SAGE Publications.
    Type: Article DOI: 10.1177/1362361320903128 OpenAlex: https://openalex.org/W3008810253
    Crossref OpenAlex
  23. Nick Haslam (2006). Dehumanization: An Integrative Review . Personality and Social Psychology Review, 10(3), 252-264. SAGE Publications.
    Type: Article DOI: 10.1207/s15327957pspr1003_4 OpenAlex: https://openalex.org/W2124809053
    Crossref OpenAlex
  24. X. Chen , R. Fan (2010). The Family and Harmonious Medical Decision Making: Cherishing an Appropriate Confucian Moral Balance . Journal of Medicine and Philosophy, 35(5), 573-586. Oxford University Press (OUP).
    Type: Article DOI: 10.1093/jmp/jhq046 OpenAlex: https://openalex.org/W2152446013
    Crossref OpenAlex
  25. Young-Shin Park , Uichol Kim (2006). Family, Parent-Child Relationship, and Academic Achievement in Korea . In International and Cultural Psychology (pp. 421-443). Springer US.
    Type: Book chapter DOI: 10.1007/0-387-28662-4_19 OpenAlex: https://openalex.org/W2225546110
    Crossref OpenAlex
  26. Caroline A. Fisher , Nicci Grace , Edmund Tsang , James Lewis , Jessamae Pieters (2025). Neuropsychology Strengths-Based Approach for the Assessment of Autism in Adults: Qualitative Thematic Analysis of Clients’ Experiences of the Diagnosis and Feedback Process . Journal of Autism and Developmental Disorders. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-025-06967-w OpenAlex: https://openalex.org/W4414139921
    Crossref OpenAlex
  27. Kirsti Malterud , Volkert Dirk Siersma , Ann Dorrit Guassora (2016). Sample Size in Qualitative Interview Studies . Qualitative Health Research, 26(13), 1753-1760. SAGE Publications.
    Type: Article DOI: 10.1177/1049732315617444 OpenAlex: https://openalex.org/W2305278139
    Crossref OpenAlex
  28. Yunhe Huang , Samuel R. C. Arnold , Kitty-Rose Foley , Julian Trollor (2022). Choose your Own Adventure: Pathways to Adulthood Autism Diagnosis in Australia . Journal of Autism and Developmental Disorders, 52(7), 2984-2996. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-021-05169-4 OpenAlex: https://openalex.org/W3178785782
    Crossref OpenAlex
  30. Nitsan Almog , Orit Kassel , Nili Levy , Tamir Gabai (2023). Mapping the Dilemmas Parents Face with Disclosing Autism Diagnosis to their Child . Journal of Autism and Developmental Disorders, 53(10), 4060-4075. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-022-05711-y OpenAlex: https://openalex.org/W4291020942
    Crossref OpenAlex
  31. Subin Park , Yeeun Lee , Chul Eung Kim (2018). Korean adults’ beliefs about and social distance toward attention-deficit hyperactivity disorder, Tourette syndrome, and autism spectrum disorder . Psychiatry Research, 269, 633-639. Elsevier BV.
    Type: Article DOI: 10.1016/j.psychres.2018.08.023 OpenAlex: https://openalex.org/W2885494143
    Crossref OpenAlex
  32. Goffman E (1963). Stigma: Notes on the Management of Spoiled Identity . Stigma: Notes on the Management of Spoiled Identity.
    Type: Other
    Crossref
  33. Bruce G. Link , Jo C. Phelan (2001). Conceptualizing Stigma . Annual Review of Sociology, 27(1), 363-385. Annual Reviews.
    Type: Article DOI: 10.1146/annurev.soc.27.1.363 OpenAlex: https://openalex.org/W4213367093
    Crossref OpenAlex
  35. Anne de Leeuw , Francesca Happé , Rosa A. Hoekstra (2020). A Conceptual Framework for Understanding the Cultural and Contextual Factors on Autism Across the Globe . Autism Research, 13(7), 1029-1050. Wiley.
    Type: Article DOI: 10.1002/aur.2276 OpenAlex: https://openalex.org/W3006691882
    Crossref OpenAlex
  36. Alice Turnock , Kate Langley , Catherine R.G. Jones (2022). Understanding Stigma in Autism: A Narrative Review and Theoretical Model . Autism in Adulthood, 4(1), 76-91. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2021.0005 OpenAlex: https://openalex.org/W4214570045
    Crossref OpenAlex
  37. So Yoon Kim , Jeong Eun Cheon , Kristen Gillespie-Lynch , Young-Hoon Kim (2022). Is autism stigma higher in South Korea than the United States? Examining cultural tightness, intergroup bias, and concerns about heredity as contributors to heightened autism stigma . Autism, 26(2), 460-472. SAGE Publications.
    Type: Article DOI: 10.1177/13623613211029520 OpenAlex: https://openalex.org/W3184686981
    Crossref OpenAlex
  39. Emeline Han , Katrina Scior , Katerina Avramides , Laura Crane (2022). A systematic review on autistic people's experiences of stigma and coping strategies . Autism Research, 15(1), 12-26. Wiley.
    Type: Article DOI: 10.1002/aur.2652 OpenAlex: https://openalex.org/W4200200179
    Crossref OpenAlex
  40. So Yoon Kim , Jeong Eun Cheon , Young-Hoon Kim (2025). A Cross-Cultural Examination of Blatant and Subtle Dehumanization of Autistic People . Journal of Autism and Developmental Disorders, 55(2), 678-694. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-023-06217-x OpenAlex: https://openalex.org/W4390840976
    Crossref OpenAlex
  41. So Yoon Kim , Kristen Gillespie-Lynch (2023). Do Autistic People’s Support Needs and Non-Autistic People’s Support for the Neurodiversity Movement Contribute to Heightened Autism Stigma in South Korea vs. the US? Journal of Autism and Developmental Disorders, 53(11), 4199-4213. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-022-05739-0 OpenAlex: https://openalex.org/W4294904405
    Crossref OpenAlex
  42. Nicola Crowe (2026). Exploring the stigmatisation of autism within South Korea: a case for the expansion of ‘ablenationalism’ . Disability & Society, 41(5), 1394-1414. Informa UK Limited.
    Type: Article DOI: 10.1080/09687599.2026.2614528 OpenAlex: https://openalex.org/W7125540803
    Crossref OpenAlex
  43. John Heritage (2012). Epistemics in Action: Action Formation and Territories of Knowledge . Research on Language and Social Interaction, 45(1), 1-29. Informa UK Limited.
    Type: Article DOI: 10.1080/08351813.2012.646684 OpenAlex: https://openalex.org/W4233956089
    Crossref OpenAlex
  44. Michael J. Seth (2017). Education Fever . University of Hawaii Press.
    Type: Book DOI: 10.1515/9780824862305 OpenAlex: https://openalex.org/W4253890277
    Crossref OpenAlex
  45. Tomoya Hirota , Keun-Ah Cheon , Meng-Chuan Lai (2024). Neurodiversity paradigms and their development across cultures: Some reflections in East Asian contexts . Autism, 28(11), 2685-2689. SAGE Publications.
    Type: Article DOI: 10.1177/13623613241285678 OpenAlex: https://openalex.org/W4403195917
    Crossref OpenAlex
  46. Ian James Kidd , Lucienne Spencer , Havi Carel (2025). Epistemic injustice in psychiatric research and practice . Philosophical Psychology, 38(2), 503-531. Informa UK Limited.
    Type: Article DOI: 10.1080/09515089.2022.2156333 OpenAlex: https://openalex.org/W4312070949
    Crossref OpenAlex
  47. Randall S. Jones , Jinwoan Beom (2022). Policies to increase youth employment in Korea . OECD Economics Department Working Papers. Organisation for Economic Co-Operation and Development (OECD).
    Type: Report DOI: 10.1787/fe10936d-en OpenAlex: https://openalex.org/W4313275259
    Crossref OpenAlex
  49. Parisa Ghanouni , Liam Seaker (2023). What does receiving autism diagnosis in adulthood look like? Stakeholders’ experiences and inputs . International Journal of Mental Health Systems, 17(1), 16-16. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s13033-023-00587-6 OpenAlex: https://openalex.org/W4379966809
    Crossref OpenAlex
  50. Nitsan Almog , Einat Haya Keren , Tamir Gabai , Orit Kassel (2025). Autistic People’s Perspectives on Parental Diagnosis Disclosure: A Grounded Theory Study . Journal of Autism and Developmental Disorders, 55(10), 3647-3661. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-024-06468-2 OpenAlex: https://openalex.org/W4400936411
    Crossref OpenAlex
  51. Almog N (2022). “Even if you don’t tell, everybody knows”: Dilemmas of parents of autistic children regarding diagnosis disclosure . Mifgash J Soc Educ Work, 30(54).
    Type: Other
    Crossref
  52. Bhattacharya P (n.d.). Experiencing independence: A qualitative study with autistic adults in India . Autism Adulthood.
    Type: Other
    Crossref
  53. Gibson J (2006). Disability and clinical competency: An introduction . Calif Psychol, 39(6), 6.
    Type: Other
    Crossref