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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?

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).

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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 (2020). https://doi.org/10.1007/s10803-020-04425-3

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Keywords

  • Autism
  • Terminology
  • Autism identity
  • Label preference
  • Person-first
  • Identity-first