Person- and identity-first language in autism research: a systematic analysis of abstracts from 11 autism journals

Added on 14/12/2024

Type de contenu

Journal article of the type Scientific research ( ; english)

Matthew Zajic , Juliette Gudknecht *
Person- and identity-first language in autism research: a systematic analysis of abstracts from 11 autism journals published in the journal "Autism" n°28, vol.10, 17 pages , doi: 10.1177/13623613241241202

*One co-author has publicly identified as autistic. [Learn more about this mention]

Summary/Presentation

There are many ways to refer to an individual who is on the autism spectrum. A recommended approach has been to use person-first language (PFL), such as "person with autism." A different approach is to use identity-first language (IFL), such as "autistic person." Recent studies focused on different groups of people (e.g. autistic self-advocates, parents, and practitioners) show that some groups prefer PFL (practitioners) while others prefer IFL (autistic self-advocates). However, less is known about how researchers use PFL and IFL in academic writing (e.g. studies published in scientific journals) involving autistic research participants. Our study examined 12,962 journal abstracts (short summaries of scientific articles) from 11 academic journals that publish autism research findings. We wanted to know (a) about the use of PFL and IFL across abstracts, and (b) how PFL and IFL use has changed annually over time. We examined data for all journals individually and grouped together. Our findings showed that journal abstracts generally use PFL (65%) with some using either IFL (16%) or both PFL and IFL (20%). However, journals varied, with some showing a clear majority for PFL and a couple for IFL. Examining trends over time across journals showed that while PFL appeared to be the majority for most journals, IFL has steadily increased in the recent few years. Our study helps us understand how autism researchers write about autistic individuals and offers implications for helping researchers intentionally make choices about the language used in their autism research studies.

For your information:

(1) References in blue are resources listed on our site.

(2) Authors listed in this bibliography whose names are in color have published other resources referenced on the site. Clicking on the name allows you to see the list of resources they have published and shared on the site.

(3) Authors whose names are followed by an asterisk have publicly disclosed being autistic.

  • C. Arnhart, M. Neale, C. Collins, T. Chesher, S. Coffey, T. Calli Rogers, R. Ottwell, M. Hartwell (2022). "The Use of Person-Centered Language in Scientific Research Articles Focused on Autism". J Dev Behav Pediatr, 43(2). doi:10.1097/dbp.0000000000001038

  • American Psychological Association (1983). Publication manual of the American Psychological Association.

  • American Psychological Association (1994). Publication manual of the American Psychological Association.

  • American Psychological Association (2001). Publication manual of the American Psychological Association.

  • American Psychological Association (2010). Publication manual of the American Psychological Association.

  • American Psychological Association (2020). Publication manual of the American Psychological Association.

  • H. Blume. (1998, September). "Neurodiversity: On the neurological underpinnings of Geekdom." The Atlantic. (Source)

  • L. Brown.* (2023). "The significance of semantics: Person-first language: Why it matters." (Source)

  • R. Buijsman, S. Begeer, A. Scheeren (2023). "'Autistic person' or 'person with autism'? Person-first language preference in Dutch adults with autism and parents". Autism, 27(3). doi:10.1177/13623613221117914

  • S. Bury, R. Jellett, J. Spoor, D. Hedley (2023). "'It Defines Who I Am' or 'It's Something I Have': What Language Do [Autistic] Australian Adults [on the Autism Spectrum] Prefer?". J Autism Dev Disord, 53(2). doi:10.1007/s10803-020-04425-3

  • Clarivate. (n.d.). "Web of science platform." (Source)

  • A. Crocker, S. Smith* (2019). "<p>Person-first language: are we practicing what we preach?</p>". JMDH, Volume 12. doi:10.2147/jmdh.s140067

  • S. DeJulio, J.V. Hoffman, M. Sailors, R.A. Martínez, M.B. Wilson. (2021). "Content analysis: The past, present, and future." In M.H. Mallette & N.K. Duke (Eds.), Literacy research methodologies (3rd ed., pp. 27–61). Guilford Press.

  • M. Dekker.* (1999). "On our own terms: Emerging autistic culture [Autism99 online conference, republished in 2015]." (Source)

  • Division on Autism and Developmental Disabilities. (n.d.). "Education and training in autism and developmental disabilities editorial policy." (Source)

  • D. Dunn, E. Andrews (2015). "Person-first and identity-first language: Developing psychologists' cultural competence using disability language.". American Psychologist, 70(3). doi:10.1037/a0038636

  • L. Fleck. (1979). "Genesis and development of a scientific fact." The University of Chicago Press.

  • P. Geelhand, F. Papastamou, M. Belenger, E. Clin, L. Hickman, C. Keating, S. Sowden (2023). "Autism-Related Language Preferences of French-Speaking Autistic Adults: An Online Survey". Autism in Adulthood, 5(3). doi:10.1089/aut.2022.0056

  • M. Ann Gernsbacher (2017). "Editorial Perspective: The use of person‐first language in scholarly writing may accentuate stigma". Child Psychology Psychiatry, 58(7). doi:10.1111/jcpp.12706

  • Interagency Autism Coordinating Committee. (2023). "2021-2023 IACC Strategic plan for autism research, services, and policy (draft)." U.S. Department of Health & Human Services. (Source)

  • C. Tom Keating, L. Hickman, J. Leung, R. Monk*, A. Montgomery, H. Heath, S. Sowden (2023). "Autism‐related language preferences of English‐speaking individuals across the globe: A mixed methods investigation". Autism Research, 16(2). doi:10.1002/aur.2864

  • Autistic Self Advocacy Network. (n.d.). "About ASAN." (Source)

  • N. Rosen, C. Lord, F. Volkmar (2021). "The Diagnosis of Autism: From Kanner to DSM-III to DSM-5 and Beyond". J Autism Dev Disord, 51(12). doi:10.1007/s10803-021-04904-1

  • E. Schopler, M. Rutter, S. Chess (1979). "Editorial: Change of journal scope and title". J Autism Dev Disord, 9(1). doi:10.1007/bf01531287

  • J. Sinclair.* (1993). "Don't mourn for us." Our Voice: The Autism Network International Newsletter, 1(3). (Source)

  • J. Singer. (1998). "Odd people in: The birth of community amongst people on the autistic spectrum: A personal exploration of a new social movement based on neurological diversity." [Thesis]. Faculty of Humanities and Social Science, University of Technology, Sydney.

  • A. Solomon. (2008, May 23). "The autism rights movement." New York Magazine. (Source)

  • A. Taboas, K. Doepke, C. Zimmerman (2023). "Preferences for identity-first versus person-first language in a US sample of autism stakeholders". Autism, 27(2). doi:10.1177/13623613221130845

  • G. Vivanti (2020). "Ask the Editor: What is the Most Appropriate Way to Talk About Individuals with a Diagnosis of Autism?". J Autism Dev Disord, 50(2). doi:10.1007/s10803-019-04280-x

This resource has not (yet) been cited on Bluesky.


 
Summarize/Comment on/Translate this reference?