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      Does Language Matter? Identity-First Versus Person-First Language Use in Autism Research: A Response to Vivanti

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          Abstract

          In response to Vivanti’s ‘Ask The Editor…’ paper [ Journal of Autism and Developmental Disorders, 50(2), 691–693], we argue that the use of language in autism research has material consequences for autistic people including stigmatisation, dehumanisation, and violence. Further, that the debate in the use of person-first language versus identity-first language should centre first and foremost on the needs, autonomy, and rights of autistic people, so in to preserve their rights to self-determination. Lastly, we provide directions for future research.

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          Which terms should be used to describe autism? Perspectives from the UK autism community.

          Lorcan Kenny, Caroline Hattersley, Bonnie Molins … (2016)
          Recent public discussions suggest that there is much disagreement about the way autism is and should be described. This study sought to elicit the views and preferences of UK autism community members - autistic people, parents and their broader support network - about the terms they use to describe autism. In all, 3470 UK residents responded to an online survey on their preferred ways of describing autism and their rationale for such preferences. The results clearly show that people use many terms to describe autism. The most highly endorsed terms were 'autism' and 'on the autism spectrum', and to a lesser extent, 'autism spectrum disorder', for which there was consensus across community groups. The groups disagreed, however, on the use of several terms. The term 'autistic' was endorsed by a large percentage of autistic adults, family members/friends and parents but by considerably fewer professionals; 'person with autism' was endorsed by almost half of professionals but by fewer autistic adults and parents. Qualitative analysis of an open-ended question revealed the reasons underlying respondents' preferences. These findings demonstrate that there is no single way of describing autism that is universally accepted and preferred by the UK's autism community and that some disagreements appear deeply entrenched.
          Article 0 comments Cited 433 times – based on 0 reviews     Review now
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            Premature mortality in autism spectrum disorder.

            Tatja Hirvikoski, Ellenor Mittendorfer-Rutz, Marcus Boman … (2016)
            Mortality has been suggested to be increased in autism spectrum disorder (ASD).
            Article 0 comments Cited 231 times – based on 0 reviews     Review now
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              Deficit, difference, or both? Autism and neurodiversity.

              Steven K. Kapp, Kristen Gillespie-Lynch, Lauren E Sherman … (2012)
              The neurodiversity movement challenges the medical model's interest in causation and cure, celebrating autism as an inseparable aspect of identity. Using an online survey, we examined the perceived opposition between the medical model and the neurodiversity movement by assessing conceptions of autism and neurodiversity among people with different relations to autism. Participants (N = 657) included autistic people, relatives and friends of autistic people, and people with no specified relation to autism. Self-identification as autistic and neurodiversity awareness were associated with viewing autism as a positive identity that needs no cure, suggesting core differences between the medical model and the neurodiversity movement. Nevertheless, results suggested substantial overlap between these approaches to autism. Recognition of the negative aspects of autism and endorsement of parenting practices that celebrate and ameliorate but do not eliminate autism did not differ based on relation to autism or awareness of neurodiversity. These findings suggest a deficit-as-difference conception of autism wherein neurological conditions may represent equally valid pathways within human diversity. Potential areas of common ground in research and practice regarding autism are discussed.
              Article 0 comments Cited 220 times – based on 0 reviews     Review now
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                Author and article information

                Contributors
                Monique Botha:
                ORCID: http://orcid.org/0000-0002-5935-9654
                m.d.botha@stir.ac.uk
                Journal
                Journal ID (nlm-ta): J Autism Dev Disord
                Journal ID (iso-abbrev): J Autism Dev Disord
                Title: Journal of Autism and Developmental Disorders
                Publisher: Springer US (New York )
                ISSN (Print): 0162-3257
                ISSN (Electronic): 1573-3432
                Publication date (Electronic): 20 January 2021
                Publication date PMC-release: 20 January 2021
                Pages: 1-9
                Affiliations
                [1 ]GRID grid.5475.3, ISNI 0000 0004 0407 4824, School of Psychology, University of Surrey, Stag Hill Campus, ; Guildford, Surrey GU2 7XH UK
                [2 ]GRID grid.12641.30, ISNI 0000000105519715, LLM Gender, Conflict & Human Rights, Transitional Justice Institute, , Ulster University, ; Jordanstown, UK
                [3 ]GRID grid.12477.37, ISNI 0000000121073784, School of Humanities, University of Brighton, ; Brighton, Sussex BN2 4AT UK
                [4 ]GRID grid.11918.30, ISNI 0000 0001 2248 4331, Present Address: Division of Psychology, Faculty of Natural Sciences, , University of Stirling, ; Stirling, UK
                Author information
                http://orcid.org/0000-0002-5935-9654
                Article
                Publisher ID: 4858
                DOI: 10.1007/s10803-020-04858-w
                PMC ID: 7817071
                SO-VID: db318ef9-59ee-4b75-9b2e-e68fde59589f
                Copyright © © The Author(s) 2021
                License:

                Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/.

                History
                Date accepted : 22 December 2020
                Categories
                Subject: Commentary

                ScienceOpen disciplines: Neurology
                Keywords: person-first language,identity-first language,stigma,rights-based approach,autism
                Data availability:
                ScienceOpen disciplines: Neurology
                Keywords: person-first language, identity-first language, stigma, rights-based approach, autism

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