Using Experience Sampling Methodology to Capture Disclosure Opportunities for Autistic Adults

Metadata sources used for this reference

OpenAlex Crossref
Learn more about the sources used

Love, A. M., Edwards, C., Cai, R. Y., & Gibbs, V. (2023). Using Experience Sampling Methodology to Capture Disclosure Opportunities for Autistic Adults. Autism in Adulthood, 5(4), 389-400. https://doi.org/10.1089/aut.2022.0090

Publication date: 21 Feb 2023 Added to AutiHub: 5 Jul 2026 Type: Article Article language: English
OpenAlex source Publisher source (DOI) Full text

This publication is integrated into AutiHub through:

Authors

Publication authors
4
Publication authors identified as autistic
1 / 4 (25.0%)
  1. Abigail M.A. Love
  2. Chris Edwards *
  3. Ru Ying Cai
  4. Vicki Gibbs

Abstract

Background: Despite a recent surge in literature contributing to our understanding of autistic individuals' disclosure experiences, the findings remain mixed. Research based on autistic people's perspective often indicates negative outcomes, while research that focuses on nonautistic perspectives is more positive. In addition, no disclosure study has used ecologically valid research methods, which help to reduce the risk of memory biases and are more representative of real-world experiences. The aim of this research was to capture outcomes from real-world disclosure opportunities as reported by a diverse range of autistic adults. Methods:Thirty-six autistic adults reported their disclosure opportunities through experience sampling methodology (58% female, 28% male, and 14% nonbinary), multiple times per day or week for 2 months. Importantly, we embedded coproduction from conception to dissemination, ensuring that the outputs are relevant and beneficial for the autistic community. Results: In total, participants recorded 231 disclosure opportunities (M = 6.42, SD = 4.83). Two-thirds of opportunities (n = 153) were categorized as disclosure, where the participants decided to share they were autistic, and 33.8% (n = 78) were labeled nondisclosure, where the participants decided not to share that they were autistic. Qualitative thematic analysis of open responses resulted in five themes that illustrated the thought processes during disclosure opportunities, the reactions of others, and reflections following disclosure for autistic adults in our study. Conclusion: These findings show that disclosure decisions and outcomes are complex and are influenced by both internal and external factors. Both support for autistic adults navigating this process and knowledge for nonautistic individuals on the experiences of their autistic friends, family, and community members will help to alleviate negative experiences and improve the mental well-being of autistic adults who face these decisions daily.

Bibliography cited by this reference

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

Bibliography inclusion overview

These indicators describe the cited bibliography imported for this publication. Cited-reference metrics use the cited-reference total as denominator. Cited-author metrics state whether they use all cited-author occurrences or only occurrences linked to authors already integrated in the AutiHub database. They use cached links between cited authors and authors integrated in the AutiHub database. Last computed: 16 Aug 2026 11:30.

Cited references
33
Total cited references integrated for this publication.
Cited references with an identified autistic author
1 / 33 (3.0%)
Cited author occurrences identified as autistic
1 / 108 (0.9%)
Among occurrences linked to AutiHub author records: 1 / 41 (2.4%). Distinct cited authors identified as autistic: 1 / 94 (1.1%).
Cited author occurrences linked to AutiHub author records
41 / 108 (38.0%)
Distinct linked cited authors: 33 / 94 (35.1%)
Linked cited-author occurrences not identified as autistic
40 / 41 (97.6%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 40 / 108 (37.0%). Distinct linked cited authors not identified as autistic: 32 / 33 (97.0%).
  1. Ru Ying Cai , Amanda L. Richdale (2016). Educational Experiences and Needs of Higher Education Students with Autism Spectrum Disorder . Journal of Autism and Developmental Disorders, 46(1), 31-41. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-015-2535-1 OpenAlex: https://openalex.org/W1457101468
    Crossref OpenAlex
  3. Niall Bolger , Jean‐Philippe Laurenceau (2013). Intensive Longitudinal Methods: An Introduction to Diary and Experience Sampling Research .
    Type: Book OpenAlex: https://openalex.org/W1962684661
    Crossref OpenAlex
  4. Simon M. Bury , Rachel Jellett , Jennifer R. Spoor , Darren Hedley (2023). “It Defines Who I Am” or “It’s Something I Have”: What Language Do [Autistic] Australian Adults [on the Autism Spectrum] Prefer? Journal of Autism and Developmental Disorders, 53(2), 677-687. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-020-04425-3 OpenAlex: https://openalex.org/W3007056653
    Crossref OpenAlex
  5. Yu-Wei Chen , Anita Bundy , Reinie Cordier , Stewart Einfeld (2014). Feasibility and usability of experience sampling methodology for capturing everyday experiences of individuals with autism spectrum disorders . Disability and Health Journal, 7(3), 361-366. Elsevier BV.
    Type: Article DOI: 10.1016/j.dhjo.2014.04.004 OpenAlex: https://openalex.org/W2034760244
    Crossref OpenAlex
  6. Eilidh Cage , Zoe Troxell-Whitman (2020). Understanding the Relationships Between Autistic Identity, Disclosure, and Camouflaging . Autism in Adulthood, 2(4), 334-338. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2020.0016 OpenAlex: https://openalex.org/W3073966041
    Crossref OpenAlex
  7. S. Knappe , J. Klotsche , A. Strobel , R.T. LeBeau , M.G. Craske , H.-U. Wittchen et al. (2013). Dimensional anxiety scales for DSM-5: Sensitivity to clinical severity . European Psychiatry, 28(7), 448-456. Cambridge University Press (CUP).
    Type: Article DOI: 10.1016/j.eurpsy.2013.02.001 OpenAlex: https://openalex.org/W2054907019
    Crossref OpenAlex
  8. Yunhe Huang , Ye In Hwang , Samuel R. C. Arnold , Lauren P. Lawson , Amanda L. Richdale , Julian N Trollor (2022). Autistic Adults’ Experiences of Diagnosis Disclosure . Journal of Autism and Developmental Disorders, 52(12), 5301-5307. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-021-05384-z OpenAlex: https://openalex.org/W4206778082
    Crossref OpenAlex
  9. Rosa A. Hoekstra , Anna A. E. Vinkhuyzen , Sally Wheelwright , Meike Bartels , Dorret I. Boomsma , Simon Baron-Cohen et al. (2011). The Construction and Validation of an Abridged Version of the Autism-Spectrum Quotient (AQ-Short) . Journal of Autism and Developmental Disorders, 41(5), 589-596. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-010-1073-0 OpenAlex: https://openalex.org/W2130501331
    Crossref OpenAlex
  10. Julia Cook , Laura Hull , Laura Crane , Will Mandy (2021). Camouflaging in autism: A systematic review . Clinical Psychology Review, 89, 102080. Elsevier BV.
    Type: Article DOI: 10.1016/j.cpr.2021.102080 OpenAlex: https://openalex.org/W3198172085
    Crossref OpenAlex
  11. Kurt Kroenke , Robert L. Spitzer , Janet B. W. Williams (2001). The PHQ-9 . Journal of General Internal Medicine, 16(9), 606-613. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1046/j.1525-1497.2001.016009606.x OpenAlex: https://openalex.org/W2132322340
    Crossref OpenAlex
  12. Eilidh Cage , Zoe Troxell-Whitman (2019). Understanding the Reasons, Contexts and Costs of Camouflaging for Autistic Adults . Journal of Autism and Developmental Disorders, 49(5), 1899-1911. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-018-03878-x OpenAlex: https://openalex.org/W2909219349
    Crossref OpenAlex
  13. Yu-Wei Chen , Anita C Bundy , Reinie Cordier , Yi-Ling Chien , Stewart L Einfeld (2017). A cross-cultural exploration of the everyday social participation of individuals with autism spectrum disorders in Australia and Taiwan: An experience sampling study . Autism, 21(2), 231-241. SAGE Publications.
    Type: Article DOI: 10.1177/1362361316636756 OpenAlex: https://openalex.org/W2343019270
    Crossref OpenAlex
  14. Laura Hull , K. V. Petrides , Carrie Allison , Paula Smith , Simon Baron-Cohen , Meng-Chuan Lai et al. (2017). “Putting on My Best Normal”: Social Camouflaging in Adults with Autism Spectrum Conditions . Journal of Autism and Developmental Disorders, 47(8), 2519-2534. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-017-3166-5 OpenAlex: https://openalex.org/W2616560149
    Crossref OpenAlex
  15. Tiffany D. Johnson , Aparna Joshi (2016). Dark clouds or silver linings? A stigma threat perspective on the implications of an autism diagnosis for workplace well-being. Journal of Applied Psychology, 101(3), 430-449. American Psychological Association (APA).
    Type: Article DOI: 10.1037/apl0000058 OpenAlex: https://openalex.org/W2398172144
    Crossref OpenAlex
  16. Sandy Thompson-Hodgetts , Chantal Labonte , Rinita Mazumder , Shanon Phelan (2020). Helpful or harmful? A scoping review of perceptions and outcomes of autism diagnostic disclosure to others . Research in Autism Spectrum Disorders, 77, 101598. Elsevier BV.
    Type: Article DOI: 10.1016/j.rasd.2020.101598 OpenAlex: https://openalex.org/W3038469061
    Crossref OpenAlex
  17. Noah J. Sasson , Kerrianne E Morrison (2019). First impressions of adults with autism improve with diagnostic disclosure and increased autism knowledge of peers . Autism, 23(1), 50-59. SAGE Publications.
    Type: Article DOI: 10.1177/1362361317729526 OpenAlex: https://openalex.org/W2766361726
    Crossref OpenAlex
  18. Katie Maras , Imogen Marshall , Chloe Sands (2019). Mock Juror Perceptions of Credibility and Culpability in an Autistic Defendant . Journal of Autism and Developmental Disorders, 49(3), 996-1010. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-018-3803-7 OpenAlex: https://openalex.org/W2899039026
    Crossref OpenAlex
  19. Kyle M. Frost , Kathryn M. Bailey , Brooke R. Ingersoll (2019). “I Just Want Them to See Me As…Me”: Identity, Community, and Disclosure Practices Among College Students on the Autism Spectrum . Autism in Adulthood, 1(4), 268-275. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2018.0057 OpenAlex: https://openalex.org/W2976484598
    Crossref OpenAlex
  20. Ru Ying Cai , Amanda L. Richdale , Cheryl Dissanayake , Mirko Uljarević (2020). How Does Emotion Regulation Strategy Use and Psychological Wellbeing Predict Mood in Adults With and Without Autism Spectrum Disorder? A Naturalistic Assessment . Journal of Autism and Developmental Disorders, 50(5), 1786-1799. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-019-03934-0 OpenAlex: https://openalex.org/W2915435012
    Crossref OpenAlex
  21. Sally Lindsay , Victoria Osten , Mana Rezai , Sunny Bui (2021). Disclosure and workplace accommodations for people with autism: a systematic review . Disability and Rehabilitation, 43(5), 597-610. Informa UK Limited.
    Type: Article DOI: 10.1080/09638288.2019.1635658 OpenAlex: https://openalex.org/W2953880694
    Crossref OpenAlex
  22. Anna Melissa Romualdez , Zachary Walker , Anna Remington (2021). Autistic adults’ experiences of diagnostic disclosure in the workplace: Decision-making and factors associated with outcomes . Autism & Developmental Language Impairments, 6, 23969415211022955-23969415211022955. SAGE Publications.
    Type: Article DOI: 10.1177/23969415211022955 OpenAlex: https://openalex.org/W3171777987
    Crossref OpenAlex
  23. Michelle Lum , Michelle Garnett , Erin O’Connor (2014). Health communication: A pilot study comparing perceptions of women with and without high functioning autism spectrum disorder . Research in Autism Spectrum Disorders, 8(12), 1713-1721. Elsevier BV.
    Type: Article DOI: 10.1016/j.rasd.2014.09.009 OpenAlex: https://openalex.org/W1500757049
    Crossref
  24. Armita Farsinejad , Ailsa Russell , Catherine Butler (2022). Autism disclosure – The decisions autistic adults make . Research in Autism Spectrum Disorders, 93, 101936. Elsevier BV.
    Type: Article DOI: 10.1016/j.rasd.2022.101936 OpenAlex: https://openalex.org/W4212904997
    Crossref OpenAlex
  25. Jane Mantzalas , Amanda L. Richdale , Achini Adikari , Jennifer Lowe , Cheryl Dissanayake (2022). What Is Autistic Burnout? A Thematic Analysis of Posts on Two Online Platforms . Autism in Adulthood, 4(1), 52-65. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2021.0021 OpenAlex: https://openalex.org/W3198962696
    Crossref OpenAlex
  26. (n.d.). Jessup GM Bian S Chen YW Bundy A. P. I. E. L. Survey Application Manual. The University of Sydney. Published online November 1 2012. https://ses.library.usyd.edu.au/handle/2123/9490 Accessed March21 2022.
    Type: Other
    Crossref
  27. John Jamieson , Virginia Braun , Victoria Clarke (2014). Successful Qualitative Research: A practical guide for beginners . QMiP Bulletin, 1(18), 39-41. British Psychological Society.
    Type: Article DOI: 10.53841/bpsqmip.2014.1.18.39 OpenAlex: https://openalex.org/W4364348136
    OpenAlex
  28. den Houting J (2021). Participatory and inclusive autism research practice guides . Participatory and Inclusive Autism Research Practice Guides, 192236536X.
    Type: Other
    Crossref
  29. 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
  30. Virginia Braun , Victoria Clarke (2019). Reflecting on reflexive thematic analysis . Qualitative Research in Sport, Exercise and Health, 11(4), 589-597. Informa UK Limited.
    Type: Article DOI: 10.1080/2159676x.2019.1628806 OpenAlex: https://openalex.org/W2950504429
    Crossref
  31. Braun V. (2013). Successful Qualitative Research: A Practical Guide for Beginners . Successful qualitative research: A practical guide for beginners.
    Type: Other
    Crossref
  32. Greene M. (2014). On the inside looking in: Methodological insights and challenges in conducting qualitative insider research . Qual Report, 19(29), 1106.
    Type: Other
    Crossref
  33. Ryan A. Miller , Richmond D. Wynn , Kristine W. Webb (2019). “This really interesting juggling act”: How university students manage disability/queer identity disclosure and visibility. Journal of Diversity in Higher Education, 12(4), 307-318. American Psychological Association (APA).
    Type: Article DOI: 10.1037/dhe0000083 OpenAlex: https://openalex.org/W2887268248
    Crossref