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“It Defines Who I Am” or “It’s Something I Have”: What Language Do [Autistic] Australian Adults [on the Autism Spectrum] Prefer?

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Abstract

There has been a recent shift from person-first to identity-first language to describe autism. In this study, Australian adults who reported having a diagnosis of autism (N = 198) rated and ranked autism-terms for preference and offensiveness, and explained their choice in free-text. ‘Autistic’, ‘Person on the Autism Spectrum’, and ‘Autistic Person’ were rated most preferred and least offensive overall. Ranked-means showed ‘person on the autism spectrum’ was the most preferred term overall. Six qualitative themes reflected (1) autism as core to, or (2) part of one’s identity, (3) ‘spectrum’ reflecting diversity, (4) the rejection of stigmatising and (5) medicalised language, and (6) pragmatics. These findings highlight the importance of inclusive dialogue regarding individual language preference.

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Notes

  1. A total of 363 responses were collected. However, 165 were excluded after being identified as spam (Dupuis et al. 2019), repeat responses, and under-age responses (See Supplementary Materials 1 for details of exclusion and analysis).

References

  • American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (DSM-5®). Philadelphia: American Psychiatric Publishing.

    Book  Google Scholar 

  • American Psychological Association. (2012). Publication manual of the American Psychological Association – (6th ed.). Washington DC: American Psychological Association.

    Google Scholar 

  • Andrews, E. E., Forber-Pratt, A. J., Mona, L. R., Lund, E. M., Pilarski, C. R., & Balter, R. (2019). # SaytheWord: A disability culture commentary on the erasure of “disability”. Rehabilitation Psychology, 64, 111–118.

    Article  PubMed  Google Scholar 

  • Arnold, S., Foley, K.-R., Hwang, Y. I. J., Richdale, A. L., Uljarevic, M., Lawson, L. P., et al. (2019). Cohort profile: The Australian Longitudinal Study of Adults with Autism (ALSAA). British Medical Journal Open, 9, e030798.

    Google Scholar 

  • Autism in Adulthood. (2019). Information for authors. Retrieved from https://home.liebertpub.com/publications/autism-in-adulthood/646/for-authors

  • Bagatell, N. (2010). From cure to community: Transforming notions of autism. Ethos, 38, 33–55.

    Article  Google Scholar 

  • Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77–101.

    Article  Google Scholar 

  • Crocker, A. F., & Smith, S. N. (2019). Person-first language: Are we practicing what we preach? Journal of Multidisciplinary Healthcare, 12, 125–129.

    Article  PubMed  PubMed Central  Google Scholar 

  • den Houting, J. (2019). Neurodiversity: An insider’s perspective. Autism, 23, 271–273.

    Article  Google Scholar 

  • Dirth, T. P., & Branscombe, N. R. (2018). The social identity approach to disability: Bridging disability studies and psychological science. Psychological Bulletin, 144, 1300–1324.

    Article  PubMed  Google Scholar 

  • Dunn, D. S., & Andrews, E. E. (2015). Person-first and identity-first language: Developing psychologists’ cultural competence using disability language. American Psychologist, 70, 255–264.

    Article  PubMed  Google Scholar 

  • Dupuis, M., Meier, E., & Cuneo, F. (2019). Detecting computer-generated random responding in questionnaire-based data: A comparison of seven indices. Behavior Research Methods, 51, 2228–2237.

    Article  PubMed  Google Scholar 

  • Field, A. (2018). Discovering statistics using IBM SPSS statistics (5th ed.): Thousand Oaks: Sage publications Ltd.

  • Galasiński, D. (2018). Language and psychiatry. The Lancet Psychiatry, 5, 200–201.

    Article  PubMed  Google Scholar 

  • Gernsbacher, M. A. (2017). Editorial perspective: The use of person-first language in scholarly writing may accentuate stigma. Journal of Child Psychology and Psychiatry, 58, 859–861.

    Article  PubMed  Google Scholar 

  • Hoekstra, R. A., Vinkhuyzen, A. A., Wheelwright, S., Bartels, M., Boomsma, D. I., Baron-Cohen, S., et al. (2011). The construction and validation of an abridged version of the autism-spectrum quotient (AQ-Short). Journal of Autism and Developmental Disorders, 41, 589–596.

    Article  PubMed  Google Scholar 

  • IBM Corp. (2016). IBM SPSS Statistics for Windows (Version 24.0). Armonk, NY: IBM Corp.

  • Kapp, S. K., Gillespie-Lynch, K., Sherman, L. E., & Hutman, T. (2013). Deficit, difference, or both? Autism and neurodiversity. Developmental Psychology, 49, 59–71.

    Article  PubMed  Google Scholar 

  • Katz, L., Nayar, K., Garagozzo, A., Schieszler-Ockrassa, C., & Paxton, J. (2019). Changes in autism nosology: The social impact of the removal of asperger’s disorder from the diagnostic and statistical manual for mental disorders, (DSM-5). Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-019-04233-4.

    Article  Google Scholar 

  • Kenny, L., Hattersley, C., Molins, B., Buckley, C., Povey, C., & Pellicano, E. (2016). Which terms should be used to describe autism? Perspectives from the UK autism community. Autism, 20, 442–462.

    Article  PubMed  Google Scholar 

  • La Forge, J. (1991). Preferred language practice in professional rehabilitation journals. The Journal of Rehabilitation, 57, 49–51.

    Google Scholar 

  • Lane, H. (2005). Ethnicity, ethics, and the deaf-world. The Journal of Deaf Studies and Deaf Education, 10, 291–310.

    Article  PubMed  Google Scholar 

  • Linton, K. F., Krcek, T. E., Sensui, L. M., & Spillers, J. L. (2014). Opinions of people who self-identify with autism and Asperger’s on DSM-5 criteria. Research on Social Work Practice, 24, 67–77.

    Article  Google Scholar 

  • Loomes, R., Hull, L., & Mandy, W. P. L. (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, 466–474.

    Article  Google Scholar 

  • Qualtrics. (2017). Qualtrics (version 2.6). Provo, UT: Qualtrics.

  • Robison, J. E. (2019). Talking about autism—Thoughts for researchers. Autism Research, 12, 1004–1006.

    Article  PubMed  Google Scholar 

  • Sinclair, J. (1999). Why I dislike ‘person-first’ language. Retrieved from https://web.archive.org/web/20090210190652/https://web.syr.edu/~jisincla/person_first.htm

  • Smith, O., & Jones, S. C. (2020). ‘Coming out’with autism: Identity in people with an Asperger’s diagnosis after DSM-5. Journal of Autism and Developmental Disorders, 50, 592–602.

    Article  PubMed  Google Scholar 

  • Sterry, R. (2019). Media communications guide. Retrieved from www.autistica.org.uk/about-us/media-communications-guide

  • Vivanti, G. (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, 691–669.

    Article  PubMed  Google Scholar 

  • Wright, B. A. (1983). Physical disability: A psychosocial approach. New York: Harper & Row.

    Book  Google Scholar 

  • Young, R. L., & Rodi, M. L. (2014). Redefining autism spectrum disorder using DSM-5: The implications of the proposed DSM-5 criteria for autism spectrum disorders. Journal of Autism and Developmental Disorders, 44, 758–765.

    Article  PubMed  Google Scholar 

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Author information

Authors and Affiliations

Authors

Contributions

SMB conceived of the study, with input from JRS and DH. SMB recruited participants, collected the data, and completed the quantitative data analysis and interpretation. SMB and RJ completed the literature review. RJ completed the qualitative data analysis and interpretation, with SMB consensus coding 30% of the data. SMB led the writing of the manuscript with edits and contributions from RJ, JRS and DH. All authors reviewed and approved the final submitted version.

Corresponding author

Correspondence to Simon M. Bury.

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Conflict of interest

Simon M. Bury and Darren Hedley were supported by funding by DXC Technology and ANZ Bank. The funders had no role in the study design, analysis, data interpretation, or writing of the report. The authors declare no other actual or potential conflict of interest.

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Bury, S.M., Jellett, R., Spoor, J.R. et al. “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, 677–687 (2023). https://doi.org/10.1007/s10803-020-04425-3

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