Autism‐related language preferences of English‐speaking individuals across the globe: A mixed methods investigation

Metadata sources used for this reference

OpenAlex Crossref OpenCitations
Learn more about the sources used

Keating, C. T., Hickman, L., Leung, J., Monk, R., Montgomery, A., Heath, H., & Sowden, S. (2022). Autism‐related language preferences of English‐speaking individuals across the globe: A mixed methods investigation. Autism Research, 16(2), 406-428. https://doi.org/10.1002/aur.2864

Publication date: 6 Dec 2022 Added to AutiHub: 6 Jul 2026 Type: Article Article language: English
OpenAlex source Publisher source (DOI) Full text

This publication is integrated into AutiHub through:

Authors

Publication authors
7
Publication authors identified as autistic
1 / 7 (14.3%)
  1. Connor Tom Keating
  2. Lydia Hickman
  3. Joan Leung
  4. Ruth Monk *
  1. Alicia Montgomery
  2. Hannah Heath
  3. Sophie Sowden

Abstract

Over the past two decades, there have been increasing discussions around which terms should be used to talk about autism. Whilst these discussions have largely revolved around the suitability of identity-first language and person-first language, more recently this debate has broadened to encompass other autism-related terminology (e.g., 'high-functioning'). To date, academic studies have not investigated the language preferences of autistic individuals outside of the United Kingdom or Australia, nor have they compared levels of endorsement across countries. Hence, the current study adopted a mixed-methods approach, employing both quantitative and qualitative techniques, to explore the linguistic preferences of 654 English-speaking autistic adults across the globe. Despite variation in levels of endorsement between countries, we found that the most popular terms were similar-the terms 'Autism', 'Autistic person', 'Is autistic', 'Neurological/Brain Difference', 'Differences', 'Challenges', 'Difficulties', 'Neurotypical people', and 'Neurotypicals' were consistently favored across countries. Despite relative consensus across groups, both our quantitative and qualitative data demonstrate that there is no universally accepted way to talk about autism. Our thematic analysis revealed the reasons underlying participants' preferences, generating six core themes, and illuminated an important guiding principle-to respect personal preferences. These findings have significant implications for informing practice, research and language policy worldwide.

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 11:31.

Cited references
81
Total cited references integrated for this publication.
Cited references with an identified autistic author
11 / 81 (13.6%)
Cited author occurrences identified as autistic
47 / 248 (19.0%)
Among occurrences linked to AutiHub author records: 47 / 138 (34.1%). Distinct cited authors identified as autistic: 43 / 212 (20.3%).
Cited author occurrences linked to AutiHub author records
138 / 248 (55.6%)
Distinct linked cited authors: 105 / 212 (49.5%)
Linked cited-author occurrences not identified as autistic
91 / 138 (65.9%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 91 / 248 (36.7%). Distinct linked cited authors not identified as autistic: 62 / 105 (59.0%).
  1. Jan La Forge (2006). RN-to-MSN Students’ Attitudes Toward Women Experiencing Homelessness: A Focus Group Study . Journal of Nursing Education, 45(8), 317-322. SLACK, Inc..
    Type: Article DOI: 10.3928/01484834-20060801-08 OpenAlex: https://openalex.org/W16915991
    Crossref OpenAlex
  2. Erin E. Andrews , Anjali J. Forber-Pratt , Linda R. Mona , Emily M. Lund , Carrie R. Pilarski , Rochelle Balter (2019). #SaytheWord: A disability culture commentary on the erasure of “disability”. Rehabilitation Psychology, 64(2), 111-118. American Psychological Association (APA).
    Type: Article DOI: 10.1037/rep0000258 OpenAlex: https://openalex.org/W2914658614
    Crossref OpenAlex OpenCitations
  3. Nigel King (2004). Using Templates in the Thematic Analysis of Text . In Essential Guide to Qualitative Methods in Organizational Research (pp. 256-270). SAGE Publications Ltd.
    Type: Book chapter DOI: 10.4135/9781446280119.n21 OpenAlex: https://openalex.org/W186362352
    Crossref OpenAlex OpenCitations
  4. Autism in Adulthood. (2019). Information for authors. https://home.liebertpub.com/publications/autism-in-adulthood/646/for-authors
    Type: Other
    Crossref
  5. Mike Oliver (2013). The social model of disability: thirty years on . Disability & Society, 28(7), 1024-1026. Informa UK Limited.
    Type: Article DOI: 10.1080/09687599.2013.818773 OpenAlex: https://openalex.org/W2087269573
    Crossref OpenAlex OpenCitations
  6. Merle Froschl (1985). Including All of Us: An Early Childhood Curriculum About Disability .
    Type: Book OpenAlex: https://openalex.org/W1484141445
    OpenAlex
  7. Nancy Bagatell (2010). From Cure to Community: Transforming Notions of Autism . Ethos, 38(1), 33-55. Wiley.
    Type: Article DOI: 10.1111/j.1548-1352.2009.01080.x OpenAlex: https://openalex.org/W2085448344
    Crossref OpenAlex OpenCitations
  8. Norman Fairclough (2013). Critical Discourse Analysis . Routledge.
    Type: Book DOI: 10.4324/9781315834368 OpenAlex: https://openalex.org/W4253414910
    Crossref OpenAlex OpenCitations
  9. Alshaba Billawala , Gregor Wolbring (2014). Analyzing the discourse surrounding Autism in the New York Times using an ableism lens . Disability Studies Quarterly, 34(1). The Ohio State University Libraries.
    Type: Article DOI: 10.18061/dsq.v34i1.3348 OpenAlex: https://openalex.org/W1568659888
    Crossref OpenAlex OpenCitations
  10. Vanessa Bal , Cristan Farmer , Audrey Thurm (2017). Describing Function in ASD: Using the DSM-5 and Other Methods to Improve Precision . Journal of Autism and Developmental Disorders, 47(9), 2938-2941. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-017-3204-3 OpenAlex: https://openalex.org/W2733136030
    Crossref OpenAlex OpenCitations
  11. Amy F. Crocker , Susan N. Smith (2019). Person-first language: are we practicing what we preach? Journal of Multidisciplinary Healthcare, Volume 12, 125-129. Informa UK Limited.
    Type: Article DOI: 10.2147/jmdh.s140067 OpenAlex: https://openalex.org/W2912882715
    Crossref OpenAlex OpenCitations
  12. Jim Sinclair * (2013). Why I dislike “person first” Language . Autonomy, the Critical Journal of Interdisciplinary Autism Studies, 1(2), 2.
    Type: Article OpenAlex: https://openalex.org/W1829568558
    Crossref OpenAlex
  13. (n.d.). The politics of neurodiversity: Why public policy matters . The politics of neurodiversity: Why public policy matters.
    Type: Other
    Crossref
  14. Joyce Davidson , Victoria L. Henderson (2010). ‘Coming out’ on the spectrum: autism, identity and disclosure . Social & Cultural Geography, 11(2), 155-170. Informa UK Limited.
    Type: Article DOI: 10.1080/14649360903525240 OpenAlex: https://openalex.org/W1989287842
    Crossref OpenAlex OpenCitations
  15. Priscilla Robinson (2007). Designing and Conducting Mixed Methods Research . Australian and New Zealand Journal of Public Health, 31(4), 388. Elsevier BV.
    Type: Article DOI: 10.1111/j.1753-6405.2007.00096.x OpenAlex: https://openalex.org/W1914972138
    OpenAlex
  16. Irving Kenneth Zola (1993). Self, identity and the naming question: Reflections on the language of disability . Social Science & Medicine, 36(2), 167-173. Elsevier BV.
    Type: Article DOI: 10.1016/0277-9536(93)90208-l OpenAlex: https://openalex.org/W1995931969
    Crossref OpenAlex OpenCitations
  17. 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 OpenCitations
  18. Blaska J. (1993). The power of language: Speak and write using “person first” . Perspectives on Disability, 25.
    Type: Other
    Crossref
  20. Mary L. Gray (2009). Negotiating Identities/Queering Desires: Coming Out Online and the Remediation of the Coming-Out Story . Journal of Computer-Mediated Communication, 14(4), 1162-1189. Oxford University Press (OUP).
    Type: Article DOI: 10.1111/j.1083-6101.2009.01485.x OpenAlex: https://openalex.org/W1979906189
    Crossref OpenAlex OpenCitations
  22. Cynthia S. Wang , Jennifer A. Whitson , Eric M. Anicich , Laura J. Kray , Adam D. Galinsky (2017). Challenge Your Stigma . Current Directions in Psychological Science, 26(1), 75-80. SAGE Publications.
    Type: Article DOI: 10.1177/0963721416676578 OpenAlex: https://openalex.org/W2586864364
    Crossref OpenAlex OpenCitations
  24. Helena Halmari (2011). Political correctness, euphemism, and language change: The case of ‘people first’ . Journal of Pragmatics, 43(3), 828-840. Elsevier BV.
    Type: Article DOI: 10.1016/j.pragma.2010.09.016 OpenAlex: https://openalex.org/W2010051322
    Crossref OpenAlex OpenCitations
  25. Braun V. (2013). Successful Qualitative Research: A Practical Guide for Beginners . Successful qualitative research: A practical guide for beginners.
    Type: Other
    Crossref
  28. 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 OpenAlex OpenCitations
  30. Brown L. (2011). The significance of semantics: person‐first language: why it matters. 4 August. http://www.autistichoya.com/2011/08/significance-of-semantics-person-first.html
    Type: Other
    Crossref
  31. Elizabeth Guest (2020). Autism from different points of view: two sides of the same coin . Disability & Society, 35(1), 156-162. Informa UK Limited.
    Type: Article DOI: 10.1080/09687599.2019.1596199 OpenAlex: https://openalex.org/W2939983913
    Crossref OpenAlex OpenCitations
  32. Luisa Ruiz Calzada , Nancy Pistrang , Will Mandy (2012). High-Functioning Autism and Asperger’s Disorder: Utility and Meaning for Families . Journal of Autism and Developmental Disorders, 42(2), 230-243. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-011-1238-5 OpenAlex: https://openalex.org/W2076107462
    Crossref OpenAlex OpenCitations
  33. 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 OpenCitations
  34. Simon M. Bury , Rachel Jellett , Alex Haschek , Michael Wenzel , Darren Hedley , Jennifer R. Spoor (2023). Understanding language preference: Autism knowledge, experience of stigma and autism identity . Autism, 27(6), 1588-1600. SAGE Publications.
    Type: Article DOI: 10.1177/13623613221142383 OpenAlex: https://openalex.org/W4311280578
    Crossref OpenAlex
  36. Caldwell B. (2008). Web content accessibility guidelines (WCAG) 2.0 . WWW Consortium (W3C), 290, 1.
    Type: Other
    Crossref
  37. Desiree R. Jones , David S. Mandell (2020). To address racial disparities in autism research, we must think globally, act locally . Autism, 24(7), 1587-1589. SAGE Publications.
    Type: Article DOI: 10.1177/1362361320948313 OpenAlex: https://openalex.org/W3090890396
    Crossref OpenAlex OpenCitations
  38. Carmen Cervone , Martha Augoustinos , Anne Maass (2021). The Language of Derogation and Hate: Functions, Consequences, and Reappropriation . Journal of Language and Social Psychology, 40(1), 80-101. SAGE Publications.
    Type: Article DOI: 10.1177/0261927x20967394 OpenAlex: https://openalex.org/W3117025998
    Crossref OpenAlex OpenCitations
  39. Steven K. Kapp * , Kristen Gillespie-Lynch , Lauren E. Sherman , Ted Hutman (2013). Deficit, difference, or both? Autism and neurodiversity. Developmental Psychology, 49(1), 59-71. American Psychological Association (APA).
    Type: Article DOI: 10.1037/a0028353 OpenAlex: https://openalex.org/W2124715426
    AutiHub · Autistic Scholars Crossref OpenAlex OpenCitations
  40. Creswell J. W. (2017). Designing and conducting mixed methods research . Designing and conducting mixed methods research.
    Type: Other
    Crossref
  41. Karen Hurlbutt , Lynne Chalmers (2002). Adults With Autism Speak Out . Focus on Autism and Other Developmental Disabilities, 17(2), 103-111. SAGE Publications.
    Type: Article DOI: 10.1177/10883576020170020501 OpenAlex: https://openalex.org/W2130225517
    Crossref OpenAlex OpenCitations
  42. Morton Ann Gernsbacher (2017). Editorial Perspective: The use of person‐first language in scholarly writing may accentuate stigma . Journal of Child Psychology and Psychiatry, 58(7), 859-861. Wiley.
    Type: Article DOI: 10.1111/jcpp.12706 OpenAlex: https://openalex.org/W2626162561
    Crossref OpenAlex OpenCitations
  44. Crow L. (1996). Exploring the divide: Illness and disability . Exploring the divide: Illness and disability.
    Type: Other
    Crossref
  45. Catherine Lord , Tony Charman , Alexandra Havdahl , Paul Carbone , Evdokia Anagnostou , Brian Boyd et al. (2022). The Lancet Commission on the future of care and clinical research in autism . The Lancet, 399(10321), 271-334. Elsevier BV.
    Type: Article DOI: 10.1016/s0140-6736(21)01541-5 OpenAlex: https://openalex.org/W4200099564
    Crossref OpenAlex OpenCitations
  46. Francisco Ortega (2009). The Cerebral Subject and the Challenge of Neurodiversity . BioSocieties, 4(4), 425-445. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1017/s1745855209990287 OpenAlex: https://openalex.org/W2158271805
    Crossref OpenAlex OpenCitations
  47. Elizabeth Currans (2017). Marching Dykes, Liberated Sluts, and Concerned Mothers: Women Transforming Public Space .
    Type: Book OpenAlex: https://openalex.org/W2766920910
    Crossref OpenAlex
  48. JOHN BOWERS (1988). Discourse and Social Psychology: Beyond Attitudes and Behaviour . British Journal of Social Psychology, 27(2), 185-192. Wiley.
    Type: Article DOI: 10.1111/j.2044-8309.1988.tb00818.x OpenAlex: https://openalex.org/W2170586945
    OpenAlex
  49. Dana S. Dunn , Erin E. Andrews (2015). Person-first and identity-first language: Developing psychologists’ cultural competence using disability language. American Psychologist, 70(3), 255-264. American Psychological Association (APA).
    Type: Article DOI: 10.1037/a0038636 OpenAlex: https://openalex.org/W2332517055
    Crossref OpenAlex OpenCitations
  50. Lorcan Kenny , Caroline Hattersley , Bonnie Molins , Carole Buckley , Carol Povey , Elizabeth Pellicano (2016). Which terms should be used to describe autism? Perspectives from the UK autism community . Autism, 20(4), 442-462. SAGE Publications.
    Type: Article DOI: 10.1177/1362361315588200 OpenAlex: https://openalex.org/W2227393071
    Crossref OpenAlex OpenCitations
  51. Anna N. De Hooge (2019). Binary Boys: Autism, Aspie Supremacy and Post/Humanist Normativity . Disability Studies Quarterly, 39(1), 2. The Ohio State University Libraries.
    Type: Article DOI: 10.18061/dsq.v39i1.6461 OpenAlex: https://openalex.org/W2918244235
    Crossref OpenAlex OpenCitations
  52. Department of Health. (2015). Statutory guidance for Local Authorities and NHS organisations to support implementation of the Adult Autism Strategy. https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/422338/autism-guidance.pdf
    Type: Other
    Crossref
  53. Steve Woolgar , Harvey Sacks , Gail Jefferson , Paul Drew , John Heritage (1995). Lectures on Conversation . The British Journal of Sociology, 46(1), 160. JSTOR.
    Type: Article DOI: 10.2307/591645 OpenAlex: https://openalex.org/W2335348029
    OpenAlex
  54. Lorelli S. Nowell , Jill M. Norris , Deborah E. White , Nancy J. Moules (2017). Thematic Analysis . International Journal of Qualitative Methods, 16(1). SAGE Publications.
    Type: Article DOI: 10.1177/1609406917733847 OpenAlex: https://openalex.org/W2763766763
    Crossref OpenAlex OpenCitations
  55. Wendy Stainton Rogers , Rex Stainton Rogers (1997). Does Critical Social Psychology Mean the End of the World? In Critical Social Psychology (pp. 67-82). SAGE Publications Ltd.
    Type: Book chapter DOI: 10.4135/9781446279199.n5 OpenAlex: https://openalex.org/W2491316112
    Crossref OpenAlex OpenCitations
  56. Beatrice A. Wright (1983). Physical disability - a psychosocial approach (2nd ed.). HarperCollins Publishers.
    Type: Book DOI: 10.1037/10589-000 OpenAlex: https://openalex.org/W2501301825
    Crossref OpenAlex OpenCitations
  57. Froschl M. (1984). Including all of us: An early childhood curriculum about disability. Educational Equity Concepts 440 Park Ave. South New York NY 10016.
    Type: Other
    Crossref
  58. Connor Tom Keating (2021). Participatory Autism Research: How Consultation Benefits Everyone . Frontiers in Psychology, 12, 713982-713982. Frontiers Media SA.
    Type: Article DOI: 10.3389/fpsyg.2021.713982 OpenAlex: https://openalex.org/W3193937630
    Crossref OpenAlex OpenCitations
  59. Philippine Geelhand , Fanny Papastamou , Marie Belenger , Élise Clin , Lydia Hickman , Connor Tom Keating et al. (2022). Autism-related language preferences of French-speaking autistic adults: an online survey . Center for Open Science.
    Type: Preprint DOI: 10.31234/osf.io/y8zj3 OpenAlex: https://openalex.org/W4308593030
    Crossref OpenAlex OpenCitations
  60. Wendy E. Shaia , Helen M. Nichols , Sarah Dababnah , Karen Campion , Nicole Garbarino (2020). Brief Report: Participation of Black and African-American Families in Autism Research . Journal of Autism and Developmental Disorders, 50(5), 1841-1846. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-019-03926-0 OpenAlex: https://openalex.org/W2918103374
    Crossref OpenAlex OpenCitations
  62. Harold A. Maio (2001). “Person first”. Psychiatric Rehabilitation Journal, 24(3), 201-202. American Psychological Association (APA).
    Type: Article DOI: 10.1037/h0095093 OpenAlex: https://openalex.org/W4249621584
    Crossref OpenAlex OpenCitations
  63. Andrew J. Hogan (2019). Social and medical models of disability and mental health: evolution and renewal . Canadian Medical Association Journal, 191(1), E16-E18. CMA Impact Inc..
    Type: Article DOI: 10.1503/cmaj.181008 OpenAlex: https://openalex.org/W2907539262
    Crossref OpenAlex OpenCitations
  64. Jernigan K. (2009). The pitfalls of political correctness: Euphemisms excoriated . Braille Monitor, 52.
    Type: Other
    Crossref
  65. Conor J. O’Dea , Donald A. Saucier (2020). Perceptions of Racial Slurs Used by Black Individuals Toward White Individuals: Derogation or Affiliation? Journal of Language and Social Psychology, 39(5-6), 678-700. SAGE Publications.
    Type: Article DOI: 10.1177/0261927x20904983 OpenAlex: https://openalex.org/W3005646278
    Crossref OpenAlex OpenCitations
  66. Robin Jeshion (2020). Pride and Prejudiced . Grazer Philosophische Studien, 97(1), 106-137. Walter de Gruyter GmbH.
    Type: Article DOI: 10.1163/18756735-09701007 OpenAlex: https://openalex.org/W3011964704
    Crossref OpenAlex OpenCitations
  67. John Elder Robison * (2019). Talking about autism—thoughts for researchers . Autism Research, 12(7), 1004-1006. Wiley.
    Type: Article DOI: 10.1002/aur.2119 OpenAlex: https://openalex.org/W2945184670
    AutiHub · Autistic Scholars Crossref OpenAlex OpenCitations
  68. Kayla M. Malone , Jamie N. Pearson , Kayla N. Palazzo , Lonnie D. Manns , Amelia Q. Rivera , DeVoshia L. Mason Martin (2022). The Scholarly Neglect of Black Autistic Adults in Autism Research . Autism in Adulthood, 4(4), 271-280. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2021.0086 OpenAlex: https://openalex.org/W4296701039
    Crossref OpenAlex OpenCitations
  69. (n.d.). Disability: A Diversity Model Approach in Human Service Practice . Disability: A Diversity Model Approach in Human Service Practice.
    Type: Other
    Crossref
  70. NHS England (2019). People with a learning disability, autism or both . Liaison and Diversion Managers and Practitioner Resources.
    Type: Other
    Crossref
  71. (2013). World Medical Association Declaration of Helsinki . JAMA, 310(20), 2191. American Medical Association (AMA).
    Type: Article DOI: 10.1001/jama.2013.281053 OpenAlex: https://openalex.org/W4292528167
    Crossref OpenAlex OpenCitations
  72. (n.d.). Autism research 4 Bridging autism science and society: Moving toward an ethically informed approach to autism research
    Type: Other
    Crossref
  73. Potter J. (1987). Discourse and social psychology: Beyond attitudes and behaviour . Discourse and social psychology: Beyond attitudes and behaviour.
    Type: Other
    Crossref
  75. Philippine Geelhand , Fanny Papastamou , Marie Belenger , Élise Clin , Lydia Hickman , Connor Tom Keating et al. (2023). Autism-Related Language Preferences of French-Speaking Autistic Adults: An Online Survey . Autism in Adulthood, 5(3), 275-288. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2022.0056 OpenAlex: https://openalex.org/W4313461306
    OpenAlex
  76. Sacks H. (1992). Lectures on Conversation . Lectures on conversation.
    Type: Other
    Crossref
  77. 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
  78. (n.d.). The disability studies reader 2 The social model of disability
    Type: Other
    Crossref
  79. Sterry R. (2019). Media communications guide. Retrieved fromwww.autistica.org.uk/about-us/media-communications-guide
    Type: Other
    Crossref
  80. Vaughan C. E. (2009). People‐first language: An unholy crusade . Braille Monitor, 52(3).
    Type: Other
    Crossref
  81. Williams K. (2019). The fallacy of functioning labels . The fallacy of functioning labels.
    Type: Other
    Crossref