‘A Lovely Safe Umbrella to Describe Yourself With’ or ‘Meaningless’: An Online Survey of UK-Based Neurodivergent Adults’ Views of Neurodiversity-Related Terminology

Grant, A., Leigh, J., Botha, M., Macdonald, S. J., Williams, K., Williams, G., Rose, K., Memmott, A., & Pearson, A. (2025). ‘A Lovely Safe Umbrella to Describe Yourself With’ or ‘Meaningless’: An Online Survey of UK-Based Neurodivergent Adults’ Views of Neurodiversity-Related Terminology. Neurodiversity, 3. https://doi.org/10.1177/27546330251390590

Publication date: 1 Nov 2025 Added to AutiHub: 5 Jul 2026 Type: Article Article language: English

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Authors

Publication authors
9
Publication authors identified as autistic
6 / 9 (66.7%)

Abstract

Background: Neurodivergence refers to people with ways of behaving and thinking that diverge from the norm. Examples include Autism, Attention Deficit Hyperactivity Disorder (ADHD), dyspraxia, dyslexia and Tourette syndrome. Neurodivergent people report being stigmatised, including by language. The language preferences of neurodivergent adults have been largely restricted to studies focused on single forms of neurodivergence, primarily Autism. Methods: We undertook an online survey with 901 neurodivergent adults from the UK, focused on their use of and thoughts about terminology related to neurodivergence, including terms such as ‘neurodiversity’ and ‘neurodivergence’. Analysis utilised descriptive statistics and thematic analysis. Results: Almost all participants (98.8%) had heard of neurodiversity, and 74.8% used neurodiversity terminology. We developed three themes. First, ‘an umbrella term’, focused on the positive and negative aspects of how ‘neurodivergence’ incorporated multiple forms of neurodivergence. Second, ‘understanding of neurodivergence (vs. neurodiverse)’, centred around a lack of understanding of neurodiversity terminology. Third, ‘stigma and identity’ focused on neurodiversity terminology's potential to reduce stigma, and simultaneously increase stigma towards individual types of neurodivergence, including Autism and ADHD. Conclusion: Those providing services to neurodivergent people should generally use neurodiversity terminology correctly, but could also mirror the individual's language choices when communicating one-to-one.

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Cited references
48
Total cited references integrated for this publication.
Cited references with an identified autistic author
9 / 48 (18.8%)
Cited author occurrences identified as autistic
52 / 227 (22.9%)
Among occurrences linked to AutiHub author records: 52 / 113 (46.0%). Distinct cited authors identified as autistic: 40 / 210 (19.0%).
Cited author occurrences linked to AutiHub author records
113 / 227 (49.8%)
Distinct linked cited authors: 97 / 210 (46.2%)
Linked cited-author occurrences not identified as autistic
61 / 113 (54.0%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 61 / 227 (26.9%). Distinct linked cited authors not identified as autistic: 57 / 97 (58.8%).
  1. Tom Shakespeare (2004). Social models of disability and other life strategies . Scandinavian Journal of Disability Research, 6(1), 8-21. Stockholm University Press.
    Crossref OpenAlex
  2. Abbasi K. (2023). Under-representation of women in research: A status quo that is a scandal . BMJ, 382.
    Type: Other
    Crossref
  3. Meng-Chuan Lai , Michael Lombardo , Bonnie Auyeung , Bhismadev Chakrabarti , Simon Baron-Cohen (2015). Sex/Gender Differences and Autism: Setting the Scene for Future Research . Journal of the American Academy of Child & Adolescent Psychiatry, 54(1), 11-24. Elsevier BV.
    Crossref OpenAlex
  4. Amy L Accardo , Kerry K Cormier (2025). What Does Neurodiversity Mean to You? Shared Meanings from University Students, Faculty and Staff . Neurodiversity, 3. SAGE Publications.
    Crossref OpenAlex
  5. Scot Danforth , Virginia Navarro (2001). Hyper Talk: Sampling the Social Construction of ADHD in Everyday Language . Anthropology & Education Quarterly, 32(2), 167-190. Wiley.
    Crossref OpenAlex
  6. Melissa Anderson-Chavarria (2022). The autism predicament: models of autism and their impact on autistic identity . Disability & Society, 37(8), 1321-1341. Informa UK Limited.
    Crossref OpenAlex
  7. 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.
    Crossref OpenAlex
  8. Erin E. Andrews , Anjali J. Forber-Pratt , Linda R. Mona , Emily M. Lund , Carrie R. Pilarski , Rochelle Balter (2019). #SaytheWord: A disability culture commentary on the erasure of “disability”. Rehabilitation Psychology, 64(2), 111-118. American Psychological Association (APA).
    Crossref OpenAlex
  9. Becker R. (2022). Gender and survey participation an event history analysis of the gender effects of survey participation in a probability-based multi-wave panel study with a sequential mixed-mode design [application/pdf] . Methods, Data, Analyses, 16(1), 29.
    Type: Other
    Crossref
  10. Ewelina Rydzewska , Laura Anne Hughes-McCormack , Christopher Gillberg , Angela Henderson , Cecilia MacIntyre , Julie Rintoul et al. (2018). Prevalence of long-term health conditions in adults with autism: observational study of a whole country population . BMJ Open, 8(8), e023945. BMJ.
    Crossref OpenAlex
  11. Marcie Berman , Lisa A. Eaton , Ryan J. Watson , Valerie A. Earnshaw , John Mark Wiginton , Eric Layland (2023). Factors Associated with Disclosure of Sexual Orientation Among Black Sexual Minority Men . LGBT Health, 10(1), 51-61. SAGE Publications.
    Crossref OpenAlex
  12. S. Bentolhoda Mousavi , Dusica Lecic-Tosevski , Hassan Khalili , S. Zeinab Mousavi , S. Zeinab Mousavi , S. Zeinab Mousavi (2020). To be able, or disable, that is the question: A critical discussion on how language affects the stigma and self-determination in people with parability . International Journal of Social Psychiatry, 66(5), 424-430. SAGE Publications.
    Crossref OpenAlex
  13. Robert Chapman *Autistic author. Learn more… (2020). Defining neurodiversity for research and practice . In Neurodiversity Studies (pp. 218-220). Routledge.
  14. Matt I. Brown , Heidi R. Fisher (2023). Promoting neurodiversity without perpetuating stereotypes or overlooking the complexity of neurodevelopmental disorders . Industrial and Organizational Psychology, 16(1), 36-40. Cambridge University Press (CUP).
    Crossref OpenAlex
  15. Bruan V. (2021). Thematic analysis: A practical guide . Thematic analysis: A practical guide.
    Type: Other
    Crossref
  16. Riley Buijsman , Sander Begeer , Anke Scheeren (2023). ‘Autistic person’ or ‘person with autism’? Person-first language preference in Dutch adults with autism and parents . Autism, 27(3), 788-795. SAGE Publications.
    Crossref OpenAlex
  17. Akash Sharma , Nguyen Tran Minh Duc , Tai Luu Lam Thang , Nguyen Hai Nam , Sze Jia Ng , Kirellos Said Abbas et al. (2021). A Consensus-Based Checklist for Reporting of Survey Studies (CROSS) . Journal of General Internal Medicine, 36(10), 3179-3187. Springer Science and Business Media LLC.
    Crossref OpenAlex
  18. Bury S. M. (2020). “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, 1.
    Type: Other
    Crossref
  19. Campbell J. (1996). Disability politics understanding our past, changing our future . Disability politics understanding our past, changing our future.
    Type: Other
    Crossref
  20. Ásta Jóhannsdóttir , Snæfríður Þóra Egilson , Freyja Haraldsdóttir (2022). Implications of internalised ableism for the health and wellbeing of disabled young people . Sociology of Health & Illness, 44(2), 360-376. Wiley.
    Crossref OpenAlex
  21. Alice Turnock , Kate Langley , Catherine R.G. Jones (2022). Understanding Stigma in Autism: A Narrative Review and Theoretical Model . Autism in Adulthood, 4(1), 76-91. SAGE Publications.
    Crossref OpenAlex
  22. Dwyer P. (2025). Neurodiversity movement identification and perceived appropriateness of terms used to describe autism . Autism in Adulthood, 1.
    Type: Other
    Crossref
  23. Miranda Fricker (2007). Epistemic Injustice . Oxford University PressOxford.
    Crossref OpenAlex
  24. Hall S. (1997). Representation: Cultural representations and signifying practices . Representation: Cultural representations and signifying practices.
    Type: Other
    Crossref
  25. Johannes Heyl , Flavien Hardy , Katie Tucker , Adrian Hopper , Maria J. Marchã , Ashley Liew et al. (2023). Data quality and autism: Issues and potential impacts . International Journal of Medical Informatics, 170, 104938. Elsevier BV.
    Crossref OpenAlex
  26. Amanda Taboas , Karla Doepke , Corinne Zimmerman (2023). Preferences for identity-first versus person-first language in a US sample of autism stakeholders . Autism, 27(2), 565-570. SAGE Publications.
    Crossref OpenAlex
  27. Hannah Hobson , Umar Toseeb , Jenny L Gibson (2024). Developmental language disorder and neurodiversity: Surfacing contradictions, tensions and unanswered questions . International Journal of Language & Communication Disorders, 59(4), 1505-1516. Wiley.
    Crossref OpenAlex
  28. Marlies J Visser , Ruth MH Peters , Marjolein Luman (2024). Understanding ADHD-related stigma: A gender analysis of young adult and key stakeholder perspectives . Neurodiversity, 2. SAGE Publications.
    Crossref OpenAlex
  29. Shae Wissell , Judith Hudson , Rebecca L. Flower , William Goh (2025). ‘I hate calling it a disability’: Exploring how labels impact adults with dyslexia through an intersectional lens . Neurodiversity, 3. SAGE Publications.
    Crossref OpenAlex
  30. NICE. (2021). Autism spectrum disorder in adults: Diagnosis and management. CG142. NICE. https://www.nice.org.uk/guidance/cg142
    Type: Other
    Crossref
  31. Etain Quigley , Tara Gallagher (2026). Neurodiversity and higher education: double masking by neurodivergent students . European Journal of Special Needs Education, 41(2), 286-302. Informa UK Limited.
    Crossref OpenAlex
  32. Sonny Jane Wise (2024). We’re All Neurodiverse . John Murray Press.
    Crossref OpenAlex
  33. ONS (2022). Ethnic group, England and Wales: Census 2021 . Disability, England and Wales: Census 2021.
    Type: Other
    Crossref
  34. (n.d.). Pinker S. (1994 April 5). The game of the name. New York Times. https://stevenpinker.com/files/pinker/files/1994_04_03_newyorktimes.pdf
    Type: Other
    Crossref
  35. Rose K. (2024). What is neurodiversity? The Autistic Advocate. https://theautisticadvocate.com/what-is-neurodiversity-new/
    Type: Other
    Crossref
  36. Samuels E. (2017). The disability studies reader . The disability studies reader, 343.
    Type: Other
    Crossref
  37. Shreffler J. (2023). Type I and type II errors and statistical power . Type I and type II errors and statistical power.
    Type: Other
    Crossref
  38. Paul Stenner (n.d.). Using Q methodology, a neurodiverse group of neurodiversity researchers ask: What is the neurodiversity movement and what should it do? Neurodiversity.
    Type: Other
    Crossref
  39. Stewart G. R. (2025). Aging across the autism spectrum . Annual Review of Developmental Psychology, 7, 4.1.
    Type: Other
    Crossref
  40. Walker, Nick (2021). Neuroqueer heresies notes on the neurodiversity paradigm, autistic empowerment, and postnormal possibilities . Neuroqueer heresies: Notes on the neurodiversity paradigm, autistic empowerment, and postnormal possibilities.
    Type: Other OpenAlex: https://openalex.org/W7011697317
    Crossref