Doing research in services for autistic people with complex support needs: Challenges and considerations based on UK experiences

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Donald, S., Sutherland, H., & Fletcher‐Watson, S. (2025). Doing research in services for autistic people with complex support needs: Challenges and considerations based on UK experiences. Autism, 30(1), 3-8. https://doi.org/10.1177/13623613251390277

Publication date: 26 Nov 2025 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. Sarah Donald
  2. Holly Sutherland *
  3. Sue Fletcher‐Watson

Abstract

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Bibliography cited by this reference

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

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 11:31.

Cited references
27
Total cited references integrated for this publication.
Cited references with an identified autistic author
1 / 27 (3.7%)
Cited author occurrences identified as autistic
1 / 101 (1.0%)
Among occurrences linked to AutiHub author records: 1 / 28 (3.6%). Distinct cited authors identified as autistic: 1 / 99 (1.0%).
Cited author occurrences linked to AutiHub author records
28 / 101 (27.7%)
Distinct linked cited authors: 27 / 99 (27.3%)
Linked cited-author occurrences not identified as autistic
27 / 28 (96.4%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 27 / 101 (26.7%). Distinct linked cited authors not identified as autistic: 26 / 27 (96.3%).
  1. Amy Pollard (2009). Field of screams: difficulty and ethnographic fieldwork . Anthropology Matters, 11(2). NomadIT.
    Type: Article DOI: 10.22582/am.v11i2.10 OpenAlex: https://openalex.org/W1534735618
    Crossref OpenAlex
  2. Paul Atkinson , Lisa Morriss (2017). On Ethnographic Knowledge . Qualitative Inquiry, 23(5), 323-331. SAGE Publications.
    Type: Article DOI: 10.1177/1077800416655825 OpenAlex: https://openalex.org/W2461346031
    Crossref OpenAlex
  3. M. Tomlinson , M. T. Yasamy , E. Emerson , A. Officer , D. Richler , S. Saxena (2014). Setting global research priorities for developmental disabilities, including intellectual disabilities and autism . Journal of Intellectual Disability Research, 58(12), 1121-1130. Wiley.
    Type: Article DOI: 10.1111/jir.12106 OpenAlex: https://openalex.org/W1906633807
    Crossref OpenAlex
  4. Jocelyn D. Avery (2019). Ethical Dilemmas and Moral Conundrums . Anthropology in Action, 26(3), 1-9. Berghahn Books.
    Type: Article DOI: 10.3167/aia.2019.260301 OpenAlex: https://openalex.org/W3010324426
    Crossref OpenAlex
  5. Helen Tager‐Flusberg , Connie Kasari (2013). Minimally Verbal School‐Aged Children with Autism Spectrum Disorder: The Neglected End of the Spectrum . Autism Research, 6(6), 468-478. Wiley.
    Type: Article DOI: 10.1002/aur.1329 OpenAlex: https://openalex.org/W1909988460
    Crossref OpenAlex
  6. R. Bishop , R. Laugharne , N. Shaw , A. M. Russell , D. Goodley , S. Banerjee et al. (2024). The inclusion of adults with intellectual disabilities in health research – challenges, barriers and opportunities: a mixed‐method study among stakeholders in England . Journal of Intellectual Disability Research, 68(2), 140-149. Wiley.
    Type: Article DOI: 10.1111/jir.13097 OpenAlex: https://openalex.org/W4387473020
    Crossref OpenAlex
  7. Greg Downey , Monica Dalidowicz , Paul H Mason (2015). Apprenticeship as method: embodied learning in ethnographic practice . Qualitative Research, 15(2), 183-200. SAGE Publications.
    Type: Article DOI: 10.1177/1468794114543400 OpenAlex: https://openalex.org/W1988588354
    Crossref OpenAlex
  8. Care Quality Commission. (2023). State of care 2022/23 edition. https://www.cqc.org.uk/publications/major-report/state-care/2022-2023/workforce
    Type: Other
    Crossref
  9. Sarah Parsons , Tony Charman , Rachel Faulkner , Jude Ragan , Simon Wallace , Kerstin Wittemeyer (2013). Commentary – bridging the research and practice gap in autism: The importance of creating research partnerships with schools . Autism, 17(3), 268-280. SAGE Publications.
    Type: Article DOI: 10.1177/1362361312472068 OpenAlex: https://openalex.org/W2129777299
    Crossref OpenAlex
  10. The Centre for Research in Autism and Education. (2024). PLASN R pan London autistic schools’ network research. https://crae.ioe.ac.uk/plasn-r/
    Type: Other
    Crossref
  11. Challenging Research Network. (n.d.). https://challengingresearch.org/
    Type: Other
    Crossref
  12. Katherine McDonald , Nicole E. Conroy , Robert S. Olick , The Project ETHICS Expert Panel (2017). What's the Harm? Harms in Research With Adults With Intellectual Disability . American Journal on Intellectual and Developmental Disabilities, 122(1), 78-92. Informa UK Limited.
    Type: Article DOI: 10.1352/1944-7558-122.1.78 OpenAlex: https://openalex.org/W2575529055
    Crossref OpenAlex
  13. Department for Education. (2023). Schools’ costs 2022 to 2024. UK Government. https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/1137908/Schools__costs_2022_to_2024.pdf
    Type: Other
    Crossref
  14. Allison Jack , Kevin A. Pelphrey (2017). Annual Research Review: Understudied populations within the autism spectrum – current trends and future directions in neuroimaging research . Journal of Child Psychology and Psychiatry, 58(4), 411-435. Wiley.
    Type: Article DOI: 10.1111/jcpp.12687 OpenAlex: https://openalex.org/W2577978291
    Crossref OpenAlex
  15. Donald S. (2025). Donald S. (2025). Improving research practices for autistic people who are minimally verbal and/or have intellectual disabilities [PhD thesis]. City St. George’s. Improving research practices for autistic people who are minimally verbal and/or have intellectual disabilities.
    Type: Other
    Crossref
  16. Smita Kumar , Liz Cavallaro (2018). Researcher Self-Care in Emotionally Demanding Research: A Proposed Conceptual Framework . Qualitative Health Research, 28(4), 648-658. SAGE Publications.
    Type: Article DOI: 10.1177/1049732317746377 OpenAlex: https://openalex.org/W2775223645
    Crossref OpenAlex
  17. Ginny Russell , Will Mandy , Daisy Elliott , Rhianna White , Tom Pittwood , Tamsin Ford (2019). Selection bias on intellectual ability in autism research: a cross-sectional review and meta-analysis . Molecular Autism, 10(1), 9. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s13229-019-0260-x OpenAlex: https://openalex.org/W2927010782
    Crossref OpenAlex
  18. Sue Fletcher‐Watson , Francesca Happé (2019). Autism . Routledge.
    Type: Book DOI: 10.4324/9781315101699 OpenAlex: https://openalex.org/W4237621835
    Crossref OpenAlex
  19. Ailbhe McKinney , Emma JL Weisblatt , Kathryn L Hotson , Zahra Bilal Ahmed , Claudia Dias , Dorit BenShalom et al. (2021). Overcoming hurdles to intervention studies with autistic children with profound communication difficulties and their families . Autism, 25(6), 1627-1639. SAGE Publications.
    Type: Article DOI: 10.1177/1362361321998916 OpenAlex: https://openalex.org/W3139920846
    Crossref OpenAlex
  20. Simon E. Kolstoe , Jonathan Pugh (2024). The trinity of good research: Distinguishing between research integrity, ethics, and governance . Accountability in Research, 31(8), 1222-1241. Informa UK Limited.
    Type: Article DOI: 10.1080/08989621.2023.2239712 OpenAlex: https://openalex.org/W4384922966
    Crossref OpenAlex
  21. Audrey Thurm , Alycia Halladay , David S. Mandell , Melissa Maye , Sarah Ethridge , Cristan Farmer (2022). Making Research Possible: Barriers and Solutions For Those With ASD and ID . Journal of Autism and Developmental Disorders, 52(10), 4646-4650. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-021-05320-1 OpenAlex: https://openalex.org/W3208585137
    Crossref OpenAlex
  22. Catherine Lord , Tony Charman , Alexandra Havdahl , Paul Carbone , Evdokia Anagnostou , Brian Boyd et al. (2022). The Lancet Commission on the future of care and clinical research in autism . The Lancet, 399(10321), 271-334. Elsevier BV.
    Type: Article DOI: 10.1016/s0140-6736(21)01541-5 OpenAlex: https://openalex.org/W4200099564
    Crossref OpenAlex
  23. Lucas M. Classick R. Skipp A. Julius J. (2023). Cost-of-living crisis: Impact on schools. National Foundation for Educational Research. https://www.nuffieldfoundation.org/wp-content/uploads/2023/03/Cost-of-Living-Crisis-Impact-on-Schools-School-Provision.pdf
    Type: Other
    Crossref
  24. Nind M. (2008). Conducting qualitative research with people with learning, communication and other disabilities: Methodological challenges . ESRC National Centre for Research Methods, 12, 1.
    Type: Other
    Crossref
  26. Sutherland H. E. A. (2025). ‘The same, but entirely different’: Reframing autistic social communicative (dys)function through mixed methods research . ‘The same, but entirely different’: Reframing autistic social communicative (dys)function through mixed methods research.
    Type: Other
    Crossref
  27. Zschomler S. (2023). A toolkit to Support Researcher Wellbeing (RES-WELL): Practical strategies for UK research institutionsfunders, and researchers in the context of emotionally or ethically challenging research . A toolkit to Support Researcher Wellbeing (RES-WELL): Practical strategies for UK research institutionsfunders, and researchers in the context of emotionally or ethically challenging research.
    Type: Other
    Crossref