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

This publication is included in the Autistic Autism Scholarship Project. one author of this publication is identified as autistic in the project.

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Metadata sources used for this reference

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Donald, S., Sutherland, H. E. A., & 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

Journal or book title
Autism
Publisher
SAGE Publications
Volume
30
Issue
1
Pages
3-8
Publication date: 26 Nov 2025 Added to AutiHub: 6 Jul 2026 Type: Article Article language: English
Publisher source (DOI) OpenAlex source

This publication is integrated into AutiHub through:

Authors

Publication authors
3
Publication authors identified as autistic
1 / 3 (33.3%)
  1. Sarah Donald
  2. Holly Elizabeth Anne Sutherland *
  3. Sue Fletcher-Watson

Abstract

No structured abstract stored for this reference.

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 07:53.

Cited references
27
With a DOI
17
Without a DOI, from raw bibliography text
10
1 / 27 (3.7%) cited references include at least one author identified as autistic.
References with data to complete
7 / 27 (25.9%)
References with detected author names
21 / 27 (77.8%)
Without detected author names
6
Without a structured title
7
Without a stable identifier
10
References with raw author names still to review
6
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
101
From DOI or external metadata
101
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
9
39 / 101 (38.6%) names are linked to an author already present in AutiHub. 62 / 101 (61.4%) names are not yet linked.
Names linked to a person identified as autistic
2 / 101 (2.0%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 2 / 39 (5.1%). Distinct people identified as autistic: 2 / 99 (2.0%).
  1. Amy Pollard (2009). Field of screams: difficulty and ethnographic fieldwork . Anthropology Matters, 11(2). NomadIT.
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  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
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  3. Mark Tomlinson , M. T. Yasamy , Eric 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
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  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
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  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
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  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
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  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
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  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.
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  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
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  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.
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  18. Sue Fletcher-Watson , Francesca Happé (2019). Autism . Routledge.
    Type: Book DOI: 10.4324/9781315101699 OpenAlex: https://openalex.org/W4237621835
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  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
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  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.
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  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.
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  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.
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  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
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