English-Language Autism Terminology Preferences of Autistic People and their Parents in the United States: Clustering Illuminates Diverse Views

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Dwyer, P., Williams, Z. J., Markfeld, J. E., & Woynaroski, T. G. (2026). English-Language Autism Terminology Preferences of Autistic People and their Parents in the United States: Clustering Illuminates Diverse Views. Autism, 30(10), 2610-2627. https://doi.org/10.1177/13623613261475023

Publication date: 25 Aug 2026 Added to AutiHub: 1 Oct 2026 Type: Article Article language: English
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Authors

Publication authors
4
Publication authors identified as autistic
2 / 4 (50.0%)
  1. Patrick Dwyer *
  2. Zachary J. Williams *
  3. Jennifer E Markfeld
  4. Tiffany G. Woynaroski

Abstract

Autism terminology preferences are the subject of considerable debate and various studies, the results of which sometimes conflict. This study examined diversity in terminology preferences in a U.S. sample of 3,181 non-autistic parents and 2,098 autistic people (including 451 autistic parents). The study also examined a particularly wide range of language issues: participants rated terms for autism, possible subgroups within autism, autistic people, autism likelihood, and autistic characteristics. Non-autistic parents’, autistic parents’, and autistic non-parents’ terminology ratings differed, but generally modestly. Using clustering to explore response patterns revealed greater variability. Almost half of the participants were grouped in the Open Cluster, characterised by liking or neutrality towards most terms. Others were grouped in the Identity-First Cluster, characterised by support for identity-first language, strong opposition to terms for possible autism subgroups, and rejection of many pathologising terms. Other participants were in the Person-First Cluster, characterised by support for person-first language, yet still some scepticism towards terms for possible autism subgroups. Autistic participants were overrepresented in the Identity-First Cluster, while non-autistic parents were overrepresented in the Person-First Cluster. These results suggest that there is presently no consensus regarding autism terminology preferences in the United States. Community Abstract Why was this study done? It is important to respect how members of any community want to be talked about. However, previous studies about terminology preferences in the autism community sometimes provide different results. These conflicting results suggest that prior studies are not always capturing the diversity of terminology preferences in the autism community. What did the researchers do? We recruited large groups of autistic and non-autistic people in the United States. We asked them to rate different terms for talking about autism, subgroups within autism, autistic people, characteristics of autism, and the likelihood that somebody will later be diagnosed with autism. We then clustered the data, which means we let participants’ responses sort themselves into clusters of similar responses. This allowed us to highlight the diversity of people’s views. What did the researchers find? We found some terms that almost everyone liked, such as “autism,” and other terms or phrases that almost everyone disliked, such as “person suffering from autism.” However, most terms were liked by some people and disliked by others. We describe an “Open Cluster” of participants who like or have neutral feelings towards most terms. We describe an “Identity-First Cluster” of participants who like identity-first language and dislike terms for subgroups within autism. Identity-First cluster members also disliked many terms that imply autism is a bad thing, like “risk” for autism. Finally, we describe a “Person-First Cluster” of participants who like person-first language. Person-First Cluster members disliked some terms for subgroups within autism, but not as strongly as Identity-First Cluster members did. What are the implications? This study shows that autism community members do not always agree about terminology. This means that it is important to be thoughtful and considerate in how we talk about autism.

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Cited references
78
With a DOI
59
Without a DOI, from raw bibliography text
19
25 / 78 (32.1%) cited references include at least one author identified as autistic.
References with data to complete
14 / 78 (17.9%)
References with detected author names
64 / 78 (82.1%)
Without detected author names
14
Without a structured title
14
Without a stable identifier
19
References with raw author names still to review
14
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
504
From DOI or external metadata
504
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
14
220 / 504 (43.7%) names are linked to an author already present in AutiHub. 284 / 504 (56.3%) names are not yet linked.
Names linked to a person identified as autistic
87 / 504 (17.3%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 87 / 220 (39.5%). Distinct people identified as autistic: 69 / 452 (15.3%).
  1. Malika Charrad , Nadia Ghazzali , Véronique Boiteau , Azam Niknafs (2014). NbClust: An R Package for Determining the Relevant Number of Clusters in a Data Set . Journal of Statistical Software, 61(6). Foundation for Open Access Statistic.
    Type: Article DOI: 10.18637/jss.v061.i06 OpenAlex: https://openalex.org/W1944603233
    Crossref OpenAlex
  2. Gail A Alvares , Keely Bebbington , Dominique Cleary , Kiah Evans , Emma J. Glasson , Murray Maybery et al. (2020). The misnomer of ‘high functioning autism’: Intelligence is an imprecise predictor of functional abilities at diagnosis . Autism, 24(1), 221-232. SAGE Publications.
    Type: Article DOI: 10.1177/1362361319852831 OpenAlex: https://openalex.org/W2950856395
    Crossref OpenAlex
  3. Glenn W. Milligan , Martha C. Cooper (1985). An Examination of Procedures for Determining the Number of Clusters in a Data Set . Psychometrika, 50(2), 159-179. Cambridge University Press (CUP).
    Type: Article DOI: 10.1007/bf02294245 OpenAlex: https://openalex.org/W1975152892
    Crossref OpenAlex
  4. González Moreno, Andrés Santiago (2013). Diagnostic and Statistical Manual of Mental Disorders . American Psychiatric Association.
    Type: Book DOI: 10.1176/appi.books.9780890425596 OpenAlex: https://openalex.org/W4247665917
    Crossref OpenAlex
  5. Pier Jaarsma , Stellan Welin (2012). Autism as a Natural Human Variation: Reflections on the Claims of the Neurodiversity Movement . Health Care Analysis, 20(1), 20-30. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10728-011-0169-9 OpenAlex: https://openalex.org/W1993582641
    Crossref OpenAlex
  7. P.J. Aspinall (2008). The categorization of African descent populations in Europe and the USA: should lexicons of recommended terminology be evidence-based? Public Health, 122(1), 61-69. Elsevier BV.
    Type: Article DOI: 10.1016/j.puhe.2007.02.018 OpenAlex: https://openalex.org/W1998542419
    Crossref OpenAlex
  8. Vincent Arel-Bundock , Noah Greifer , Andrew Heiss (2024). How to Interpret Statistical Models Using marginaleffects for R and Python . Journal of Statistical Software, 111(9). Foundation for Open Access Statistic.
    Type: Article DOI: 10.18637/jss.v111.i09 OpenAlex: https://openalex.org/W4404880964
    Crossref OpenAlex
  9. Charles Bazerman (1990). Discourse analysis and social construction . Annual Review of Applied Linguistics, 11, 77-83. Cambridge University Press (CUP).
    Type: Article DOI: 10.1017/s0267190500001963 OpenAlex: https://openalex.org/W2080862475
    Crossref OpenAlex
  10. Catherine Lord (2012). A Multisite Study of the Clinical Diagnosis of Different Autism Spectrum Disorders . Archives of General Psychiatry, 69(3), 306. American Medical Association (AMA).
    Type: Article DOI: 10.1001/archgenpsychiatry.2011.148 OpenAlex: https://openalex.org/W2121327279
    Crossref OpenAlex
  11. (n.d.). Baggs M. (2010 March 7). Aspie Supremacy can kill. Ballastexistenz. https://ballastexistenz.wordpress.com/2010/03/07/aspie-supremacy-can-kill/
    Type: Other
    Crossref
  13. (n.d.). Ballou E. P. (2018 February 6). What the neurodiversity movement does – And doesn’t: Offer. Thinking Person’s Guide to Autism. http://www.thinkingautismguide.com/2018/02/what-neurodiversity-movement-doesand.html
    Type: Other
    Crossref
  14. 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
  15. Ben L. Martin (1991). From Negro to Black to African American: The Power of Names and Naming . Political Science Quarterly, 106(1), 83-107. Oxford University Press (OUP).
    Type: Article DOI: 10.2307/2152175 OpenAlex: https://openalex.org/W2330751583
    Crossref OpenAlex
  17. 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
  18. Blaska J. (1993). Perspectives on disability . Perspectives on disability, 25.
    Type: Other
    Crossref
  19. Paul-Christian Bürkner (2017). brms: An R Package for Bayesian Multilevel Models Using Stan . Journal of Statistical Software, 80(1), 1. Foundation for Open Access Statistic.
    Type: Article DOI: 10.18637/jss.v080.i01 OpenAlex: https://openalex.org/W2749069611
    Crossref OpenAlex
  20. (n.d.). Bonnello C. (2022 March 23). Results and analysis of the autistic not weird autism survey: Autistic not. Weird. https://autisticnotweird.com/autismsurvey/
    Type: Other
    Crossref
  21. Pamela Feliciano , Amy M. Daniels , LeeAnne Green Snyder , Amy Beaumont , Alexies Camba , Amy Esler et al. (2018). SPARK: A US Cohort of 50,000 Families to Accelerate Autism Research . Neuron, 97(3), 488-493. Elsevier BV.
    Type: Article DOI: 10.1016/j.neuron.2018.01.015 OpenAlex: https://openalex.org/W2785900161
    Crossref OpenAlex
  23. Herwig Czech (2018). Hans Asperger, National Socialism, and “race hygiene” in Nazi-era Vienna . Molecular Autism, 9(1), 29-29. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s13229-018-0208-6 OpenAlex: https://openalex.org/W2801876565
    Crossref OpenAlex
  25. Dean Falk (2020). Non-complicit: Revisiting Hans Asperger’s Career in Nazi-era Vienna . Journal of Autism and Developmental Disorders, 50(7), 2573-2584. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-019-03981-7 OpenAlex: https://openalex.org/W2921268517
    Crossref OpenAlex
  26. Riley Buijsman , Sander Begeer , Anke Scheeren (2023). ‘Autistic person’ or ‘person with autism’? Person-first language preference in Dutch adults with autism and parents . Autism, 27(3), 788-795. SAGE Publications.
    Type: Article DOI: 10.1177/13623613221117914 OpenAlex: https://openalex.org/W4291165536
    Crossref OpenAlex
  28. Simon Bury , Rachel Jellett , Alexandra 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
  29. Giacomo Vivanti (2020). Ask the Editor: What is the Most Appropriate Way to Talk About Individuals with a Diagnosis of Autism? Journal of Autism and Developmental Disorders, 50(2), 691-693. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-019-04280-x OpenAlex: https://openalex.org/W2988128310
    Crossref OpenAlex
  30. Simon 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
  31. Paul S. Carbone , Carole H. Stipelman , Michele E. Villalobos , Allison Ellzey , Ashley Stuart , Gregory J. Stoddard et al. (2024). A Comparison of Parent-Reported Severe Autism With Mild/Moderate Autism Among US Children . Journal of Developmental & Behavioral Pediatrics, 45(5), e422-e430. Ovid Technologies (Wolters Kluwer Health).
    Type: Article DOI: 10.1097/dbp.0000000000001306 OpenAlex: https://openalex.org/W4401576813
    Crossref OpenAlex
  32. Matthew S. McCoy , Emily Y. Liu , Amy S. F. Lutz , Dominic Sisti (2020). Ethical Advocacy Across the Autism Spectrum: Beyond Partial Representation . The American Journal of Bioethics, 20(4), 13-24. Informa UK Limited.
    Type: Article DOI: 10.1080/15265161.2020.1730482 OpenAlex: https://openalex.org/W3012817899
    Crossref OpenAlex
  34. Robert Chapman * (2023). Empire of Normality . Pluto Press.
    Type: Book DOI: 10.2307/jj.8501594 OpenAlex: https://openalex.org/W4388587234
    Crossref OpenAlex
  35. Elaine B. Clarke , James B. McCauley , Amy Lutz , Marina Gotelli , Stephen J. Sheinkopf , Catherine Lord (2024). Understanding profound autism: implications for stigma and supports . Frontiers in Psychiatry, 15, 1287096-1287096. Frontiers Media SA.
    Type: Article DOI: 10.3389/fpsyt.2024.1287096 OpenAlex: https://openalex.org/W4391108850
    Crossref OpenAlex
  36. Éric Fombonne , Leigh Coppola , Sarah Mastel , Brian J. O’Roak (2022). Validation of Autism Diagnosis and Clinical Data in the SPARK Cohort . Journal of Autism and Developmental Disorders, 52(8), 3383-3398. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-021-05218-y OpenAlex: https://openalex.org/W3183185631
    Crossref OpenAlex
  37. (n.d.). Crosman C. (2019 November 28). Good autistic advocacy organizations vs. bad autism “charities”. In the Loop about Neurodiversity. https://intheloopaboutneurodiversity.wordpress.com/2019/11/28/good-autistic-advocacy-organizations-vs-bad-autism-charities/
    Type: Other
    Crossref
  39. 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
  40. (n.d.). Des Roches Rosa S. (2021 December 8). Creating a “profound autism” category is segregation not progress. Thinking Person’s Guide to Autism. https://thinkingautismguide.com/2021/12/creating-profound-autism-category-is.html
    Type: Other
    Crossref
  41. Patrick Dwyer * (2022). Stigma, Incommensurability, or Both? Pathology-First, Person-First, and Identity-First Language and the Challenges of Discourse in Divided Autism Communities . Journal of Developmental & Behavioral Pediatrics, 43(2), 111-113. Ovid Technologies (Wolters Kluwer Health).
    Type: Article DOI: 10.1097/dbp.0000000000001054 OpenAlex: https://openalex.org/W4206529449
    Crossref OpenAlex
  42. Donvan J. (2016). In a different key: The story of autism . In a different key: The story of autism.
    Type: Other
    Crossref
  44. Patrick Dwyer * (2022). Heterogeneity and clustering in autism . In The Routledge International Handbook of Critical Autism Studies (pp. 42-55). Routledge.
    Type: Book chapter DOI: 10.4324/9781003056577-6 OpenAlex: https://openalex.org/W4307049150
    AutiHub · Autistic Autism Scholarship Project Crossref OpenAlex
  50. 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
  51. Jacky (Manidoomakwakwe) Ellis (2023). Imagining Neurodivergent Futures from the Belly of the Identity Machine: Neurodiversity, Biosociality, and Strategic Essentialism . Autism in Adulthood, 5(3), 225-235. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2021.0075 OpenAlex: https://openalex.org/W4313462048
    Crossref OpenAlex
  53. Amanda Taboas , Karla Doepke , Corinne Zimmerman (2023). Preferences for identity-first versus person-first language in a US sample of autism stakeholders . Autism, 27(2), 565-570. SAGE Publications.
    Type: Article DOI: 10.1177/13623613221130845 OpenAlex: https://openalex.org/W4306157884
    Crossref OpenAlex
  54. Jaime Flowers , Jillian Dawes , Daniel McCleary , Hunter Marzolf (2023). Words matter: Language preferences in a sample of autistic adults . Neurodiversity, 1. SAGE Publications.
    Type: Article DOI: 10.1177/27546330231216548 OpenAlex: https://openalex.org/W4389052076
    Crossref OpenAlex
  55. Ather Sharif , Aedan Liam McCall , Kianna Roces Bolante (2022). Should I Say “Disabled People” or “People with Disabilities”? Language Preferences of Disabled People Between Identity- and Person-First Language . Proceedings of the 24th International ACM SIGACCESS Conference on Computers and Accessibility, 1-18. ACM.
    Type: Article DOI: 10.1145/3517428.3544813 OpenAlex: https://openalex.org/W4307137010
    Crossref OpenAlex
  56. Alison Singer , Amy Lutz , Jill Escher , Alycia Halladay (2023). A full semantic toolbox is essential for autism research and practice to thrive . Autism Research, 16(3), 497-501. Wiley.
    Type: Article DOI: 10.1002/aur.2876 OpenAlex: https://openalex.org/W4311202441
    Crossref OpenAlex
  57. (n.d.). Gardiner F. (2018 March 23). The problems with functioning labels. Thinking Person’s Guide to Autism. https://thinkingautismguide.com/2018/03/the-problems-with-functioning-labels.html
    Type: Other
    Crossref
  59. (n.d.). Horton K. (Director). (2020 December 16). People first—In the shadow of fairview (15(1)) [Broadcast]. In Oregon experience: Oregon public broadcasting. https://www.opb.org/news/series/move-to-include/people-first-in-the-shadow-of-fairview/
    Type: Other
    Crossref
  60. Rose A. Mason , Catharine Lory , Emily Gregori , Stephanie Gerow , Mandy J. Rispoli , Marie David et al. (2024). Evidence-Based Practice in Inclusive Settings for Students with Autism: a Best-Evidence Synthesis . Review Journal of Autism and Developmental Disorders, 11(3), 564-580. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s40489-022-00352-4 OpenAlex: https://openalex.org/W4313409125
    Crossref OpenAlex
  61. Kailes J. I. (1985). Watch your language, please! Journal of Rehabilitation, 51(1), 68.
    Type: Other
    Crossref
  65. Lee Elizabeth Wachtel , Jill Escher , Alycia Halladay , Amy Lutz , Gloria M. Satriale , Arthur Westover et al. (2024). Profound Autism . Pediatric Clinics of North America, 71(2), 301-313. Elsevier BV.
    Type: Article DOI: 10.1016/j.pcl.2023.12.005 OpenAlex: https://openalex.org/W4391147561
    Crossref OpenAlex
  67. (n.d.). Lutz A. S. F. (2020 June 23). When autism advocacy is “partial.”. Psychology Today. https://www.psychologytoday.com/intl/blog/inspectrum/202006/when-autism-advocacy-is-partial
    Type: Other
    Crossref
  68. Giacomo Vivanti (2024). Autism Early Intervention – Progress, Steps Backward, and the Reconciliation of Conflicting Narratives . Current Psychiatry Reports, 26(12), 753-760. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s11920-024-01552-x OpenAlex: https://openalex.org/W4403774482
    Crossref OpenAlex
  69. Ernst Tatzer , Werner Maleczek (2025). Was Hans Asperger Complicit in the Nazi Child Euthanasia by Participating in the Gugging Commission? Zeitschrift für Kinder- und Jugendpsychiatrie und Psychotherapie, 53(3), 126-136. Hogrefe Publishing Group.
    Type: Article DOI: 10.1024/1422-4917/a001001 OpenAlex: https://openalex.org/W4404320885
    Crossref OpenAlex
  70. (n.d.). Murray F. (2023 February 28). We need to talk about Aspie supremacists. Thinking Person’s Guide to Autism. https://thinkingautismguide.com/2023/02/we-need-to-talk-about-aspie-supremacists.html
    Type: Other
    Crossref
  72. (n.d.). Neumeier S. (2018 February 9). ‘To Siri with love’ and the problem with neurodiversity lite. Rewire News Group. https://rewirenewsgroup.com/2018/02/09/siri-love-problem-neurodiversity-lite/
    Type: Other
    Crossref
  73. People First of Canada. (n.d.). Some history. https://www.peoplefirstofcanada.ca/about-us/history/
    Type: Other
    Crossref
  74. Retzlaff S. (2005). What’s in a name? The politics of labelling and native identity constructions . The Canadian Journal of Native Studies, 25(2), 609.
    Type: Other
    Crossref
  75. Sequenzia A. (n.d.). More problems with functioning labels. https://ollibean.org/problems-functioning-labels/
    Type: Other
    Crossref
  76. (n.d.). SFARI. (2025 May 8). SFARI scientific perspectives. https://www.sfari.org/funding-opportunities/sfari-scientific-perspectives/
    Type: Other
    Crossref
  77. Julia Sinclair (2013). Why I dislike “person first” language . Autonomy, the Critical Journal of Interdisciplinary Autism Studies, 1(2), 2.
    Type: Other
    Crossref
  78. Thinking Person’s Guide to Autism. (n.d.). Neurodiversity FAQ: A neurodiversity facts and myths primer. https://thinkingautismguide.com/so-youre-doing-story-about
    Type: Other
    Crossref