The use of language in autism research

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Monk, R., Whitehouse, A., & Waddington, H. (2022). The use of language in autism research. Trends in Neurosciences, 45(11), 791-793. https://doi.org/10.1016/j.tins.2022.08.009

Publication date: 29 Sep 2022 Added to AutiHub: 6 Jul 2026 Type: Article Article language: English
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Authors

Publication authors
3
Publication authors identified as autistic
1 / 3 (33.3%)
  1. Ruth Monk *
  2. Andrew Whitehouse
  3. Hannah Waddington

Abstract

The past three decades have seen a major shift in our understanding of the strong links between autism and identity. These developments have called for careful consideration of the language used to describe autism. Here, we briefly discuss some of these deliberations and provide guidance to researchers around language use in autism research. The past three decades have seen a major shift in our understanding of the strong links between autism and identity. These developments have called for careful consideration of the language used to describe autism. Here, we briefly discuss some of these deliberations and provide guidance to researchers around language use in autism research. The language used to talk about autism is important. Well-informed use of terminology can empower and support autistic people, while also changing attitudes of the broader community. Although the term ‘autism’ has a long history of clinical use, research over the past three decades has led to a revolution in our understanding of people’s experience of autism and its links to identity [1.Gillespie-Lynch K. et al.Whose expertise is it? Evidence for autistic adults as critical autism experts.Front. Psychol. 2017; 8: 438Crossref PubMed Scopus (112) Google Scholar,2.Pellicano E. den Houting J. Annual research review: shifting from ‘normal science’ to neurodiversity in autism science.J. Child Psychol. Psychiatry. 2022; 63: 381-396Crossref PubMed Scopus (37) Google Scholar]. These research advances have major implications for the language we use to describe autism. The term ‘autism’ emerged in the early 20th century through Eugen Bleuler’s observation that some schizophrenic ‘patients’ had withdrawn from social contact and appeared to be living in their own world. Then, in the 1940s, the term was first used to represent children with particular behavioural characteristics. The term was eventually included in the third edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-III) in 1980. Throughout this time, autism was generally conceptualised by researchers and clinicians through a medical model lens as being abnormal or atypical and, thus, clinical efforts often focussed on ‘fixing’ or ‘curing’ the autistic person. Over the past three decades, this medical model stance on autism has been challenged by the neurodiversity and autistic self-advocacy movements, which view autism as a part of the natural spectrum of human diversity and, thus, an inseparable aspect of identity. Aligning with the social model of disability, the neurodiversity paradigm attributes the disabilities associated with autism to the interactions between autistic characteristics and an environment that imposes structural, systemic, and social barriers on autistic people [1.Gillespie-Lynch K. et al.Whose expertise is it? Evidence for autistic adults as critical autism experts.Front. Psychol. 2017; 8: 438Crossref PubMed Scopus (112) Google Scholar,2.Pellicano E. den Houting J. Annual research review: shifting from ‘normal science’ to neurodiversity in autism science.J. Child Psychol. Psychiatry. 2022; 63: 381-396Crossref PubMed Scopus (37) Google Scholar]. In conceptualising autism as a neurological difference rather than as a disorder, clinical and research efforts are encouraged to focus on creating more inclusive environments and societies to enhance autistic well-being and quality of life. This evolution in the understanding of autism has also mirrored a transition in the use of language in research contexts. Historically, most autism research has been carried out without input from autistic people [3.den Houting J. et al.‘I’m not just a guinea pig’: academic and community perceptions of participatory autism research.Autism. 2021; 25: 148-163Crossref PubMed Scopus (21) Google Scholar]. This research has often described autism and autistic people using medicalised, pathologising, and deficit-based language (e.g., disorder, impairment, or cure) and person-first language (e.g., child with autism). This terminology has often formed part of journal formatting requirements, which has sustained and reinforced its use among researchers [4.Gernsbacher M.A. Editorial perspective: the use of person-first language in scholarly writing may accentuate stigma.J. Child Psychol. Psychiatry. 2017; 58: 859-861Crossref PubMed Scopus (153) Google Scholar]. The use of these types of terminology has come under sharp criticism by autistic and neurodivergent scholars, who have advocated strongly that such terminology can have negative consequences for how society views and treats autistic people and can even influence how autistic people view themselves [1.Gillespie-Lynch K. et al.Whose expertise is it? Evidence for autistic adults as critical autism experts.Front. Psychol. 2017; 8: 438Crossref PubMed Scopus (112) Google Scholar,5.Bury S.M. 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; (Published online February 28, 2020)https://doi.org/10.1007/s10803-020-04425-3Crossref PubMed Scopus (122) Google Scholar]. Autistic people have the most intimate autism expertise through their first-hand lived experience [1.Gillespie-Lynch K. et al.Whose expertise is it? Evidence for autistic adults as critical autism experts.Front. Psychol. 2017; 8: 438Crossref PubMed Scopus (112) Google Scholar]. Thus, there is increasingly widespread acknowledgement that the terminology used to refer to autism and autistic people should prioritise the perspectives and preferences of autistic people themselves. These preferences have been explored by several large surveys conducted by researchers and autistic advocatesi [6.Bottema-Beutel K. et al.Avoiding ableist language: suggestions for autism researchers.Autism Adulthood. 2021; 3: 18-29Crossref Scopus (194) Google Scholar, 7.Kenny L. et al.Which terms should be used to describe autism?

Bibliography cited by this reference

Cited references are imported from external metadata sources when they are available. The list may be partial.

Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 2 Oct 2026 08:04.

Cited references
13
With a DOI
13
Without a DOI, from raw bibliography text
0
5 / 13 (38.5%) cited references include at least one author identified as autistic.
References with data to complete
0 / 13 (0.0%)
References with detected author names
13 / 13 (100.0%)
Without detected author names
0
Without a structured title
0
Without a stable identifier
0
References with raw author names still to review
0
References with external metadata lookup issues
0
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
85
From DOI or external metadata
85
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
0
46 / 85 (54.1%) names are linked to an author already present in AutiHub. 39 / 85 (45.9%) names are not yet linked.
Names linked to a person identified as autistic
9 / 85 (10.6%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 9 / 46 (19.6%). Distinct people identified as autistic: 7 / 81 (8.6%).
  1. Bonnie J. Kaplan , Deborah M. Dewey , Susan G. Crawford , Brenda N. Wilson (2001). The Term Comorbidity Is of Questionable Value in Reference to Developmental Disorders . Journal of Learning Disabilities, 34(6), 555-565. SAGE Publications.
    Type: Article DOI: 10.1177/002221940103400608 OpenAlex: https://openalex.org/W2014067452
    Crossref OpenAlex OpenCitations
  4. Lorcan Kenny , Caroline Hattersley , Bonnie Molins , Carole Buckley , Carol Povey , Elizabeth Pellicano (2016). Which terms should be used to describe autism? Perspectives from the UK autism community . Autism, 20(4), 442-462. SAGE Publications.
    Type: Article DOI: 10.1177/1362361315588200 OpenAlex: https://openalex.org/W2227393071
    Crossref OpenAlex OpenCitations
  6. Morton Ann Gernsbacher (2017). Editorial Perspective: The use of person‐first language in scholarly writing may accentuate stigma . Journal of Child Psychology and Psychiatry, 58(7), 859-861. Wiley.
    Type: Article DOI: 10.1111/jcpp.12706 OpenAlex: https://openalex.org/W2626162561
    Crossref OpenAlex OpenCitations
  7. Sue Fletcher-Watson , Fabio Apicella , Bonnie Auyeung , Stepanka Beranova , Frederique Bonnet-Brilhault , Ricardo Canal-Bedia et al. (2017). Attitudes of the autism community to early autism research . Autism, 21(1), 61-74. SAGE Publications.
    Type: Article DOI: 10.1177/1362361315626577 OpenAlex: https://openalex.org/W2339741724
    Crossref OpenAlex OpenCitations
  9. Kristie Patten Koenig , Lauren Hough Williams (2017). Characterization and Utilization of Preferred Interests: A Survey of Adults on the Autism Spectrum . Occupational Therapy in Mental Health, 33(2), 129-140. Informa UK Limited.
    Type: Article DOI: 10.1080/0164212x.2016.1248877 OpenAlex: https://openalex.org/W2584331516
    Crossref OpenAlex OpenCitations
  10. Simon Bury , Rachel Jellett , Jennifer R. Spoor , Darren Hedley (2023). “It Defines Who I Am” or “It’s Something I Have”: What Language Do [Autistic] Australian Adults [on the Autism Spectrum] Prefer? Journal of Autism and Developmental Disorders, 53(2), 677-687. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-020-04425-3 OpenAlex: https://openalex.org/W3007056653
    Crossref OpenAlex OpenCitations
  11. Gail A Alvares , Keely Bebbington , Dominique Cleary , Kiah Evans , Emma J. Glasson , Murray Maybery et al. (2020). The misnomer of ‘high functioning autism’: Intelligence is an imprecise predictor of functional abilities at diagnosis . Autism, 24(1), 221-232. SAGE Publications.
    Type: Article DOI: 10.1177/1362361319852831 OpenAlex: https://openalex.org/W2950856395
    Crossref OpenAlex OpenCitations
  12. Jiedi Lei , Lauren Jones , M. Brosnan (2021). Exploring an e-learning community’s response to the language and terminology use in autism from two massive open online courses on autism education and technology use . Autism, 25(5), 1349-1367. SAGE Publications.
    Type: Article DOI: 10.1177/1362361320987963 OpenAlex: https://openalex.org/W3128740123
    Crossref OpenAlex OpenCitations