'Not a trouble': A mixed-method study of autism-related language preferences by French-Canadian adults from the autism community

Added on 16/10/2024

Type de contenu

Journal article of the type Scientific research ( ; english)

'Not a trouble': A mixed-method study of autism-related language preferences by French-Canadian adults from the autism community published in the journal "Neurodiversity" n°2, 13 pages , doi: 10.1177/27546330241253696

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

=> Unrestricted access and free

Summary/Presentation

Finding a consensual term for persons diagnosed with autism spectrum disorder has recently been debated in the scientific literature. Considering the stigma associated with using terms deemed offensive, it is paramount to address autism respectfully and consensually. As of now, this study is the first to consult French-Canadian participants beyond autistic people themselves. This mixed-method study aimed to document and understand the preference and offensiveness of terms used to refer to persons living with autism. Participants (N = 327) were adults who self-identified as part of the autism community (i.e., autistic person, family or friends, professionals, or clinicians). By means of an online survey, they rated and ranked six terms used to designate an autistic person. Participants also explained their ranking. Results show no consensus for the use of any one specific term. A clear dichotomy appears between autistic adults’ and professionals’ preferences in terminology. The latter prioritized terms related to the medical model, whereas autistic persons preferred using identity-related language. Among all respondents, Autistic person was the most preferred and least offensive term. Thus, we suggest asking for the concerned person's preference whenever possible or using terminology preferred by the majority when this cannot be done.

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.


  • American Psychiatric Association (2022). "Diagnostic and Statistical Manual of Mental Disorders".

  • V. Braun, V. Clarke (2019). "Reflecting on reflexive thematic analysis". Qualitative Research in Sport, Exercise and Health, 11(4). doi:10.1080/2159676x.2019.1628806

  • R. Brislin (1970). "Back-Translation for Cross-Cultural Research". Journal of Cross-Cultural Psychology, 1(3). doi:10.1177/135910457000100301

  • 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

  • Cambridge Dictionary (2024). "Cambridge advanced learner's dictionary & thesaurus".

  • 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

  • I. Garcia-Molina (2019). "Terminological preferences about autism according to participants of a MOOC on inclusive education". Psicología, Conocimiento y Sociedad, 9(1).

  • 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

  • A. Kallitsounaki, D. Williams (2023). "Autism Spectrum Disorder and Gender Dysphoria/Incongruence. A systematic Literature Review and Meta-Analysis". J Autism Dev Disord, 53(8). doi:10.1007/s10803-022-05517-y

  • 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

  • I. Kiehl, R. Pease, C. Hackmann (2024). "The adult experience of being diagnosed with autism spectrum disorder: A qualitative meta-synthesis". Autism, 28(5). doi:10.1177/13623613231220419

  • L. Overton (2023), F. Marsà-Sambola ,R. Martin, P. Cavenagh (2023) "Understanding the self-identification of autism in adults: A scoping review". Review Journal of Autism and Developmental Disorders. doi:10.1007/s40489-023-00361-x

  • J. Sinclair (2013). "Why I dislike ‘person first’ language". Autonomy, the Critical Journal of Interdisciplinary Autism Studies, 1(2), 2–3

  • G. Sullivan, A. Artino (2013). "Analyzing and Interpreting Data From Likert-Type Scales". Journal of Graduate Medical Education, 5(4). doi:10.4300/jgme-5-4-18

  • 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. Trundle, K. Jones, D. Ropar, V. Egan (2023). "Prevalence of Victimisation in Autistic Individuals: A Systematic Review and Meta-Analysis". Trauma, Violence, & Abuse, 24(4). doi:10.1177/15248380221093689

  • 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 is cited in 1 resource referenced on the site:


 
Summarize/Comment on/Translate this reference?