‘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
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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.
Bibliography cited by this reference
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Bibliography inclusion overview
These indicators describe the cited bibliography imported for this publication. Cited-reference metrics use the cited-reference total as denominator. Cited-author metrics state whether they use all cited-author occurrences or only occurrences linked to authors already integrated in the AutiHub database. They use cached links between cited authors and authors integrated in the AutiHub database. Last computed: 16 Aug 2026 11:30.
-
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
-
Abbasi K. (2023). Under-representation of women in research: A status quo that is a scandal . BMJ, 382.Type: OtherCrossref
-
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
-
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
-
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
-
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
-
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
-
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
-
Lindsay O’Dell , Hanna Bertilsdotter Rosqvist *Autistic author. Learn more… , Francisco Ortega , Charlotte Brownlow , Michael Orsini (2016). Critical autism studies: exploring epistemic dialogues and intersections, challenging dominant understandings of autism . Disability & Society, 31(2), 166-179. Informa UK Limited.
-
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: OtherCrossref
-
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
-
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
-
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
-
Monique Botha *Autistic author. Learn more… , Robert Chapman *Autistic author. Learn more… , Morénike Giwa Onaiwu *Autistic author. Learn more… , Steven K. Kapp *Autistic author. Learn more… , Abs S. Ashley *Autistic author. Learn more… , Nick Walker *Autistic author. Learn more… (2024). The neurodiversity concept was developed collectively: An overdue correction on the origins of neurodiversity theory . Autism, 28(6), 1591-1594. SAGE Publications.
-
Kristen Bottema‐Beutel , Steven K. Kapp *Autistic author. Learn more… , Noah J. Sasson , Morton Ann Gernsbacher , Heini M Natri *Autistic author. Learn more… , Monique Botha *Autistic author. Learn more… (2023). Anti-ableism and scientific accuracy in autism research: a false dichotomy . Frontiers in Psychiatry, 14, 1244451-1244451. Frontiers Media SA.
-
Robert Chapman *Autistic author. Learn more… (2020). Defining neurodiversity for research and practice . In Neurodiversity Studies (pp. 218-220). Routledge.
-
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
-
Desiree R. Jones , Christina Nicolaidis , Lisa J. Ellwood , Arianne Garcia , Khalilah R. Johnson , Kristina Lopez et al. (2020). An Expert Discussion on Structural Racism in Autism Research and Practice . Autism in Adulthood, 2(4), 273-281. SAGE Publications.
-
Bruan V. (2021). Thematic analysis: A practical guide . Thematic analysis: A practical guide.Type: OtherCrossref
-
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
-
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
-
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: OtherCrossref
-
Anna Stenning *Autistic author. Learn more… , Hanna Bertilsdotter Rosqvist *Autistic author. Learn more… (2021). Neurodiversity studies: mapping out possibilities of a new critical paradigm . Disability & Society, 36(9), 1532-1537. Informa UK Limited.
-
Campbell J. (1996). Disability politics understanding our past, changing our future . Disability politics understanding our past, changing our future.Type: OtherCrossref
-
Steven K. Kapp *Autistic author. Learn more… (2020). Autistic Community and the Neurodiversity Movement . Springer Singapore.
-
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
-
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
-
Dwyer P. (2025). Neurodiversity movement identification and perceived appropriateness of terms used to describe autism . Autism in Adulthood, 1.Type: OtherCrossref
-
Miranda Fricker (2007). Epistemic Injustice . Oxford University PressOxford.Type: Book DOI: 10.1093/acprof:oso/9780198237907.001.0001 OpenAlex: https://openalex.org/W4252633962Crossref OpenAlex
-
Hall S. (1997). Representation: Cultural representations and signifying practices . Representation: Cultural representations and signifying practices.Type: OtherCrossref
-
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
-
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
-
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
-
Heini M Natri *Autistic author. Learn more… , Oluwatobi Abubakare *Autistic author. Learn more… , Kassiane Asasumasu *Autistic author. Learn more… , Abha Basargekar , Flavien Beaud , Monique Botha *Autistic author. Learn more… et al. (2023). Anti‐ableist language is fully compatible with high‐quality autism research: Response to S inger et al. (2023) . Autism Research, 16(4), 673-676. Wiley.
-
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
-
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
-
NICE. (2021). Autism spectrum disorder in adults: Diagnosis and management. CG142. NICE. https://www.nice.org.uk/guidance/cg142Type: OtherCrossref
-
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
-
Sonny Jane Wise (2024). We’re All Neurodiverse . John Murray Press.Crossref OpenAlex
-
ONS (2022). Ethnic group, England and Wales: Census 2021 . Disability, England and Wales: Census 2021.Type: OtherCrossref
-
(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.pdfType: OtherCrossref
-
Rose K. (2024). What is neurodiversity? The Autistic Advocate. https://theautisticadvocate.com/what-is-neurodiversity-new/Type: OtherCrossref
-
Samuels E. (2017). The disability studies reader . The disability studies reader, 343.Type: OtherCrossref
-
Shreffler J. (2023). Type I and type II errors and statistical power . Type I and type II errors and statistical power.Type: OtherCrossref
-
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: OtherCrossref
-
Stewart G. R. (2025). Aging across the autism spectrum . Annual Review of Developmental Psychology, 7, 4.1.Type: OtherCrossref
-
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/W7011697317Crossref