Preferences for Identity-First and Person-First Language: A Systematic Review of Research With Autistic Adults/Adults With Autism

Schuck, R. K., Chetcuti, L., Dwyer, P., Milosavljevic, K., Bury, S. M., Hedley, D., Begeer, S., Vivanti, G., & Uljarević, M. (2025). Preferences for Identity-First and Person-First Language: A Systematic Review of Research With Autistic Adults/Adults With Autism. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-025-07174-3

Publication date: 13 Dec 2025 Added to AutiHub: 5 Jul 2026 Type: Article Article language: English

This publication is integrated into AutiHub through:

Authors

Publication authors
9
Publication authors identified as autistic
1 / 9 (11.1%)

Abstract

PURPOSE: Recommendations concerning the language used to describe autism center primarily around preferences for person-first language (PFL; e.g., person with autism) or identity-first language (IFL; e.g.., autistic person). Empirical research on this topic has recently proliferated, yet there is no clear consensus. In this study, we systematically reviewed prior research on the autistic community's language preferences. METHODS: Our search generated 2483 articles. Nineteen studies (N = 6350) quantitatively assessed autistic people's perspectives of autism language terms. We extracted data regarding most preferred terms and terms deemed acceptable for use. RESULTS: All studies were conducted online. Fourteen assessed preferred terminology; 10 found that more participants preferred IFL than PFL, though there was also considerable PFL endorsement (4-39% of participants) in these studies. Two studies that found a preference for PFL over IFL were conducted in Dutch. When able to choose "no preference/either" (6 studies), 4-37% of participants chose this option. Seven studies assessed acceptable terms; IFL terms were endorsed as acceptable by ~ 40-97% of participants, PFL terms by 5-53%, and "on the spectrum" by 8-45%. Across studies, participants were not representative of the entire autism spectrum (e.g., likely few participants with intellectual disability). CONCLUSION: Study results vary widely and suggest no consensus as to whether individuals with autism prefer IFL or PFL, neither across nor necessarily even within cultures and languages. We present several considerations for members of the autism community (e.g., researchers, clinicians, etc.) regarding use of PFL and IFL, with the ultimate goal of ensuring individual preferences are respected.

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
72
Total cited references integrated for this publication.
Cited references with an identified autistic author
21 / 72 (29.2%)
Cited author occurrences identified as autistic
31 / 188 (16.5%)
Among occurrences linked to AutiHub author records: 31 / 124 (25.0%). Distinct cited authors identified as autistic: 21 / 153 (13.7%).
Cited author occurrences linked to AutiHub author records
124 / 188 (66.0%)
Distinct linked cited authors: 90 / 153 (58.8%)
Linked cited-author occurrences not identified as autistic
93 / 124 (75.0%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 93 / 188 (49.5%). Distinct linked cited authors not identified as autistic: 69 / 90 (76.7%).
  1. American Psychological Association. (2010). Publication Manual of the American Psychological Association (6th Edition). American Psychological Association.
    Type: Other
    Crossref
  2. Steven K. Kapp *Autistic author. Learn more… , 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
  3. American Psychological Association. (2023). Inclusive language guide (2nd ed.). American Psychological Association. https://www.apa.org/about/apa/equity-diversity-inclusion/language-guidelines.pdf
    Type: Other
    Crossref
  4. Deborah Marks (1997). Models of disability . Disability and Rehabilitation, 19(3), 85-91. Informa UK Limited.
    Crossref OpenAlex
  5. Daryll Archibald , Patrick Dwyer *Autistic author. Learn more… , Simon M. Bury (2024). Current Debates on Autism Language Preferences: An Overview . In The Palgrave Encyclopedia of Disability (pp. 1-13). Springer Nature Switzerland.
  6. 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.
    Crossref OpenAlex
  7. Asasumasu, K. A. (2015). PSA from the actual coiner of “neurodivergent.” Lost in My Mind TARDIS. https://sherlocksflataffect.tumblr.com/post/121295972384/psa-from-the-actual-coiner-of-neurodivergent
    Type: Other
    Crossref
  8. 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
  9. (n.d.). Autism CRC. (2020, March 20). Language choices around autism and individuals on the autism spectrum. https://www.autismcrc.com.au/language-choice
    Type: Other
    Crossref
  10. 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
  11. Autism in Adulthood. (n.d.). Autism in Adulthood: For Authors: Manuscript Submission Guidelines. MaryAnn Liebert. https://home.liebertpub.com/publications/autism-in-adulthood/646/for-authors#policies
    Type: Other
    Crossref
  12. Rachel Loomes , Laura Hull , Will Mandy (2017). What Is the Male-to-Female Ratio in Autism Spectrum Disorder? A Systematic Review and Meta-Analysis . Journal of the American Academy of Child & Adolescent Psychiatry, 56(6), 466-474. Elsevier BV.
    Crossref OpenAlex
  13. Autism Speaks. (n.d.). Describing autism and people on the spectrum | Autism Speaks. https://www.autismspeaks.org/describing-autism-and-people-spectrum
    Type: Other
    Crossref
  14. 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.
    Crossref OpenAlex
  15. Autistic Self Advocacy Network. (n.d.). Identity-First Language. Autistic Self Advocacy Network. https://autisticadvocacy.org/about-asan/identity-first-language/
    Type: Other
    Crossref
  16. Andrea Hollomotz (2018). Successful interviews with people with intellectual disability . Qualitative Research, 18(2), 153-170. SAGE Publications.
    Crossref OpenAlex
  17. Hanne Marie Høybråten Sigstad , Veerle Garrels (2017). Facilitating qualitative research interviews for respondents with intellectual disability . European Journal of Special Needs Education, 1-15. Informa UK Limited.
    Crossref OpenAlex
  18. Bailin, A. (2019). Clearing Up Some Misconceptions about Neurodiversity. Scientific American Blog Network. https://blogs.scientificamerican.com/observations/clearing-up-some-misconceptions-about-neurodiversity/
    Type: Other
    Crossref
  19. Ballou, E. P. (2018). 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
  20. Robert Chapman *Autistic author. Learn more… (2020). Neurodiversity, disability, wellbeing . In Neurodiversity Studies (pp. 57-72). Routledge.
    Type: Book chapter DOI: 10.4324/9780429322297-7 OpenAlex: https://openalex.org/W2966072789
  21. Krista L. Best , W. Ben Mortenson , Zach Lauzière-Fitzgerald , Emma M. Smith (2022). Language matters! The long-standing debate between identity-first language and person first language . Assistive Technology, 34(2), 127-128. Informa UK Limited.
    Crossref OpenAlex
  22. Olivia A. Smith , Sandra Thom-Jones *Autistic author. Learn more… (2020). ‘Coming Out’ with Autism: Identity in People with an Asperger’s Diagnosis After DSM-5 . Journal of Autism and Developmental Disorders, 50(2), 592-602. Springer Science and Business Media LLC.
  23. Blaska, J. (1993). The Power of Language: Speak and Write Using “Person First.” In Perspectives on Disability (pp. 25–32). Health Markets Research.
    Type: Other
    Crossref
  24. 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.
    Crossref OpenAlex
  25. Renate Bosman , Jochem Thijs (2024). Language Preferences in the Dutch Autism Community: A Social Psychological Approach . Journal of Autism and Developmental Disorders, 54(5), 1727-1739. Springer Science and Business Media LLC.
    Crossref OpenAlex
  26. 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.
    Crossref OpenAlex
  27. Jiedi Lei , Lauren Jones , Mark Brosnan (2021). Exploring an e-learning community’s response to the language and terminology use in autism from two massive open online courses on autism education and technology use . Autism, 25(5), 1349-1367. SAGE Publications.
    Crossref OpenAlex
  28. (n.d.). Brown, L. (2011, August 4). The Significance of Semantics: Person-First Language: Why It Matters. https://www.autistichoya.com/2011/08/significance-of-semantics-person-first.html
    Type: Other
    Crossref
  29. Valérie Courchesne , Rackeb Tesfaye , Pat Mirenda , David Nicholas , Wendy Mitchell , Ilina Singh et al. (2022). Autism Voices: A novel method to access first-person perspective of autistic youth . Autism, 26(5), 1123-1136. SAGE Publications.
    Crossref OpenAlex
  30. 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.
    Crossref OpenAlex
  31. Patrick Dwyer *Autistic author. Learn more… (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).
    Crossref OpenAlex
  32. 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.
    Crossref OpenAlex
  33. Meng-Jia Wu , Kelly Zhao , Francisca Fils-Aime (2022). Response rates of online surveys in published research: A meta-analysis . Computers in Human Behavior Reports, 7, 100206. Elsevier BV.
    Crossref OpenAlex
  34. Convention on the Rights of Persons with Disabilities—Articles. (2006). United Nations Department of Economica And Social Affairs: Social Inclusion. https://social.desa.un.org/issues/disability/crpd/convention-on-the-rights-of-persons-with-disabilities-articles
    Type: Other
    Crossref
  35. 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.
    Crossref OpenAlex
  36. Hannah De Laet , Annabel D. Nijhof , Jan R. Wiersema (2025). Adults with Autism Prefer Person-First Language in Dutch: A Cross-Country Study . Journal of Autism and Developmental Disorders, 55(6), 2027-2033. Springer Science and Business Media LLC.
    Crossref OpenAlex
  37. 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.
    Crossref OpenAlex
  38. 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.
    Crossref OpenAlex
  39. Jaime Flowers , Jillian Dawes , Daniel McCleary , Hunter Marzolf (2023). Words matter: Language preferences in a sample of autistic adults . Neurodiversity, 1. SAGE Publications.
    Crossref OpenAlex
  40. Focus on Autism and Other Developmental Disabilities. (2024). Focus on Autism and Other Developmental Disabilities: Author Guidelines. Hammill Institute on Disabilities. https://s3-us-west-2.amazonaws.com/clarivate-scholarone-prod-us-west-2-s1m-public/wwwRoot/prod1/societyimages/focus/AuthorGuidelines_Focus_web10-24.pdf
    Type: Other
    Crossref
  41. Lisa B. Grech , Donna Koller , Amanda Olley (2024). Person-first and identity-first disability language: Informing client centred care . Social Science & Medicine, 362, 117444. Elsevier BV.
    Crossref OpenAlex
  42. Connie M. S. Janiszewski , Emily Friedel , David Skvarc , Donna Koller , Lisa B. Grech (2026). The relationship between disability identity and use of person-first and identity-first language. Rehabilitation Psychology, 71(3), 330-340. American Psychological Association (APA).
    Crossref OpenAlex
  43. Kailes, J. (n.d.). Watch Your Language, Please! - ProQuest. https://www.proquest.com/docview/1310693833/fulltextPDF/E1A5A31D29834639PQ/1?accountid=14026sourcetype=Scholarly%20Journals
    Type: Other
    Crossref
  44. Alicja Niedźwiecka , Ewa Pisula (2026). Autism Spectrum-Related Terms Preferred by Polish-Speaking Persons on the Autism Spectrum and Participants Without a Diagnosis of Autism Spectrum Conditions . Autism in Adulthood, 8(3), 518-526. SAGE Publications.
    Crossref OpenAlex
  45. Uchong Lao , Jiamin Dai , Fengjing Liang , Qian Chen , Wei Cao , Yueran Pan et al. (2026). Unveiling the Perceptions of Autism-Related Chinese Language Among the Autism Community and the General Public . Autism in Adulthood, 8(3), 423-442. SAGE Publications.
    Crossref OpenAlex
  46. Zoë S. Robertson , Kayden M. Stockwell , Andrew J. Lampi , Vikram K. Jaswal (2026). Autism Terminology Preferences Among Autistic and Non-Autistic Adults in North America . Autism in Adulthood, 8(4), 776-787. SAGE Publications.
    Crossref OpenAlex
  47. Ladau, E. (2015). Why Person-First Language Doesn’t Always Put the Person First. Maryland Coalition for Inclusive Education. https://mcie.org/think-inclusive/why-person-first-language-doesnt-always-put-the-person-first/
    Type: Other
    Crossref
  48. Yong-Hwee Nah , Hillary Ler-Lee Lim (2025). Preferences for Identity-First Versus Person-First Language in a Sample of University Students with Special Educational Needs (SEN) in Singapore . Journal of Autism and Developmental Disorders. Springer Science and Business Media LLC.
    Crossref OpenAlex
  49. Matthew J. Smith , RaMonda Horton , Meredith Fitzgibbons (2023). Preferences for Person-First Language and Identity-First Language in Autistic Communities . Journal of Critical Study of Communication and Disability, 1(2). Journal of Critical Study of Communication and Disability.
    Crossref OpenAlex
  50. Minnesota Department of Administration, Governor’s Council on Developmental Disabilities. (n.d.). Parallels in Tme: A History of Developmental Disabilities—1974 People First Conference (Valerie Schaaf). https://mn.gov/mnddc/parallels/seven/7b/valerieSchaaf.html
    Type: Other
    Crossref
  51. A Oprea (2019). Dimensions of Antigypsyism in Europe . Dimensions of Antigypsyism in Europe, 276.
    Type: Other
    Crossref
  52. People First. (n.d.). Welcome to People First.org! https://www.peoplefirst.org/
    Type: Other
    Crossref
  53. Sequenzia, A. (2017). The Failings of Person First Language—Autistic Women & Nonbinary Network (AWN). https://awnnetwork.org/failings-person-first-language/
    Type: Other
    Crossref
  54. Sinclair, J. (1993). Don’t Mourn For Us. Our Voice, Volume 1, Number 3. https://www.autreat.com/dont_mourn.html
    Type: Other
    Crossref
  55. Sinclair, J. (2013). Why I dislike “Person First” language.
    Type: Other
    Crossref
  56. United Nations. (2007). Frequently Asked Questions (FAQs). United Nations ENABLE. https://www.un.org/esa/socdev/enable/faqs.htm#definition
    Type: Other
    Crossref