We’re Not Your Empathy Exercise: Reclaiming Co-Production in Neurodivergent Research and Practice

Powell, L. (2025). We’re Not Your Empathy Exercise: Reclaiming Co-Production in Neurodivergent Research and Practice. Neurodiversity, 3. https://doi.org/10.1177/27546330251363393

Publication date: 1 May 2025 Added to AutiHub: 9 Aug 2026 Type: Article Article language: English

This publication is integrated into AutiHub through:

Authors

Publication authors
1
Publication authors identified as autistic
1 / 1 (100.0%)

Abstract

Co-production, a collaborative approach to research and practice, has gained traction in neurodiversity studies as a means to include autistic and otherwise neurodivergent individuals. However, superficial or under-supported co-production risks losing its transformative potential, leaving contributors feeling exploited or excluded. This commentary draws on personal experience as a late-diagnosed autistic and attention deficit hyperactivity disorder (ADHD) academic woman to examine the risks of tokenistic or extractive co-production and proposes a justice-oriented vision rooted in equity, accountability, and solidarity. Key terms are defined, the distinction between inclusion and equity is explored, and practical principles for ethical co-production are outlined. Emphasising ethical listening, intersectionality, and clear feedback loops, this paper offers a constructive path towards relational justice and neurodivergent leadership. Lay Abstract Co-production in neurodivergence research aims to involve autistic and neurodivergent people as equal partners, but shallow efforts can leave contributors feeling used or ignored. As a late-diagnosed autistic and ADHD academic woman, I explore these challenges and propose a better way forward. Too often, neurodivergent voices are heard but not acted upon, turning co-production into storytelling without power-sharing. This commentary outlines six principles for ethical co-production, focusing on equity, transparency, and diverse inclusion, especially for marginalised groups like non-speaking individuals or those with intellectual disabilities. By valuing lived experience as expertise, ensuring clear feedback, and supporting neurodivergent leadership, research can truly empower communities. Funders and researchers must provide accessible tools, fair pay, and shared decision-making to make co-production meaningful. This approach not only improves research but also drives real-world change in policy and practice, respecting neurodivergent identities. Written for researchers, funders, and advocates, this commentary offers a practical roadmap to transform co-production into a tool for justice and collaboration, ensuring neurodivergent people are partners, not just participants.

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 11:31.

Cited references
37
Total cited references integrated for this publication.
Cited references with an identified autistic author
9 / 37 (24.3%)
Cited author occurrences identified as autistic
14 / 133 (10.5%)
Among occurrences linked to AutiHub author records: 14 / 72 (19.4%). Distinct cited authors identified as autistic: 14 / 129 (10.9%).
Cited author occurrences linked to AutiHub author records
72 / 133 (54.1%)
Distinct linked cited authors: 68 / 129 (52.7%)
Linked cited-author occurrences not identified as autistic
58 / 72 (80.6%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 58 / 133 (43.6%). Distinct linked cited authors not identified as autistic: 54 / 68 (79.4%).
  1. Miranda Fricker (2007). Epistemic Injustice . Oxford University PressOxford.
    OpenAlex
  2. Tereza Aidonopoulou-Read (2025). Empowering non-speaking autistic participants and neurotypical researchers in qualitative research through ethical listening: A framework . Neurodiversity, 3. SAGE Publications.
    Crossref OpenAlex OpenCitations
  3. Sherry R. Arnstein (1969). A Ladder Of Citizen Participation . Journal of the American Institute of Planners, 35(4), 216-224. Informa UK Limited.
    Crossref OpenAlex OpenCitations
  4. Julia Amann , Joanna Sleigh (2021). Too Vulnerable to Involve? Challenges of Engaging Vulnerable Groups in the Co-production of Public Services through Research . International Journal of Public Administration, 44(9), 715-727. Informa UK Limited.
    Crossref OpenAlex OpenCitations
  5. Martijn Dekker *Autistic author. Learn more… (2020). From Exclusion to Acceptance: Independent Living on the Autistic Spectrum . In Autistic Community and the Neurodiversity Movement (pp. 41-49). Springer Singapore.
    AutiHub · Autistic Scholars Crossref OpenAlex OpenCitations
  6. Ward E. Jones (2009). Epistemic Injustice: Power and the Ethics of Knowing . Ratio, 22(3), 369-373. Wiley.
    OpenAlex
  7. R. D'Amico (1978). Discipline and Punish: The Birth of the Prison . Telos, 1978(36), 169-183. Telos Press.
    OpenAlex
  8. Nel Noddings (2017). Care Ethics and Education . In Beyond Bystanders (pp. 183-190). SensePublishers.
    Crossref OpenAlex OpenCitations
  9. Darrell Norman Burrell , Samira Askarova , Stacey L. Morin , Maria Mondala-Duncan , Delores Springs , Amalisha Sabie Aridi et al. (2025). Exploring how the lack of inclusive approaches to neurodiversity and invisible disabilities in the workplace creates significant health disparities . Brazilian Journal of Business, 7(1), e76666. Brazilian Journals.
    Crossref OpenAlex OpenCitations
  10. Matthew Deaves (2017). General Data Protection Regulation (GDPR) .
    Type: Article OpenAlex: https://openalex.org/W2758544228
    OpenAlex
  11. Coldham T. (2018). Guidance on co-producing a research project. NIHR Involve.
    Type: Other
    Crossref
  12. Joe Langley , Daniel Wolstenholme , Jo Cooke (2018). ‘Collective making’ as knowledge mobilisation: the contribution of participatory design in the co-creation of knowledge in healthcare . BMC Health Services Research, 18(1), 585-585. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  13. Data Protection Act. (2018). General data protection regulation (GDPR). Intouch 25 1–5. https://www.legislation.gov.uk/ukpga/2018/12/contents
    Type: Other
    Crossref
  14. Kathryn Oliver , Anita Kothari , Nicholas Mays (2019). The dark side of coproduction: do the costs outweigh the benefits for health research? Health Research Policy and Systems, 17(1), 33. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  15. Lula Dembele , Sally Nathan , Allison Carter , Jane Costello , Michael Hodgins , Rose Singh et al. (2024). Researching With Lived Experience: A Shared Critical Reflection Between Co-Researchers . International Journal of Qualitative Methods, 23. SAGE Publications.
    Crossref OpenAlex OpenCitations
  16. Orla C Putnam , Genessa Eddy , Shannon Crowley , Madison Swisher , Clare Harrop (2025). “I’m Excited to Have my Voice Heard”: Understanding Autism Research Participation From the Perspective of Autistic Women, Non-Binary Adults, and Parents of Autistic Girls . Neurodiversity, 3. SAGE Publications.
    Crossref OpenAlex OpenCitations
  17. Brett Smith , Oli Williams , Lydia Bone , the Moving Social Work Co-production Collective (2023). Co-production: A resource to guide co-producing research in the sport, exercise, and health sciences . Qualitative Research in Sport, Exercise and Health, 15(2), 159-187. Informa UK Limited.
    Crossref OpenAlex OpenCitations
  18. Foucault M. (1977). Discipline and punish: The birth of the prison . Discipline and punish: The birth of the prison, 227.
    Type: Other
    Crossref
  19. Temple S. Lovelace , Mary P. Comis , JoVonne M. Tabb , Olajumoke E. Oshokoya (2022). Missing from the Narrative: A Seven-Decade Scoping Review of the Inclusion of Black Autistic Women and Girls in Autism Research . Behavior Analysis in Practice, 15(4), 1093-1105. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  20. Anna Pettican , Beverley Goodman , Wendy Bryant , Peter Beresford , Paul Freeman , Valerie Gladwell et al. (2023). Doing together: reflections on facilitating the co-production of participatory action research with marginalised populations . Qualitative Research in Sport, Exercise and Health, 15(2), 202-219. Informa UK Limited.
    Crossref OpenAlex OpenCitations
  21. Joe Langley , Nicola Kayes , Ian Gwilt , Erna Snelgrove-Clarke , Sarah Smith , Claire Craig (2022). Exploring the value and role of creative practices in research co-production . Evidence & Policy, 18(2), 193-205. Bristol University Press.
    Crossref OpenAlex OpenCitations
  22. Hickey G. Brearley S. Coldham T. Denegri S. Green G. Staniszewska S. Tembo D. Torok K. Turner K. (2018). Guidance on co-producing a research project. Southampton: Involve.
    Type: Other
    Crossref
  23. Tomoya Hirota , Keun-Ah Cheon , Meng-Chuan Lai (2024). Neurodiversity paradigms and their development across cultures: Some reflections in East Asian contexts . Autism, 28(11), 2685-2689. SAGE Publications.
    Crossref OpenAlex
  24. Punit Shah , Joni Holmes (2023). Neurodiversity: Towards an interdisciplinary approach . Neurodiversity, 1, 275463302311875. SAGE Publications.
    Crossref OpenAlex
  25. Kusch M. (2009). Epistemic injustice: Power and the ethics of knowing . Epistemic injustice: Power and the ethics of knowing.
    Type: Other
    Crossref
  26. National Institute for Health and Care Research (NIHR). (2024). Going the extra mile: Improving the nation’s health and wellbeing through public involvement in research. https://www.nihr.ac.uk/going-the-extra-mile
    Type: Other
    Crossref
  27. Singer J. (2017). Neurodiversity;: The Birth of an Idea . Neurodiversity: The birth of an idea.
    Type: Other
    Crossref
  28. Sonuga-Barke E. J. S. (2024). How can we move beyond current patient and public involvement models to enrich translational science? A framework for integrating neurodivergent young people into research practice . The British Journal of Psychiatry.
    Type: Other
    Crossref
  29. UK Research and Innovation (UKRI). (2025). Co-production in research. https://www.ukri.org/manage-your-award/good-research-resource-hub/research-co-production/
    Type: Other
    Crossref