Participatory translational science of neurodivergence: model for attention-deficit/hyperactivity disorder and autism research

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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Sonuga-Barke, E. J., Chandler, S., Lukito, S., Kakoulidou, M., Moore, G., Cooper, N., Matejko, M., Jackson, I., Balwani, B., Boyens, T., Poulton, D., Harvey-Nguyen, L., Baker, S., & Pavlopoulou, G. (2024). Participatory translational science of neurodivergence: model for attention-deficit/hyperactivity disorder and autism research. The British Journal of Psychiatry, 224(4), 127-131. https://doi.org/10.1192/bjp.2023.151

Publication date: 16 Feb 2024 Added to AutiHub: 16 Oct 2026 Type: Article Article language: English
Publisher source (DOI) Full text OpenAlex source

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Authors

Publication authors
14
Publication authors identified as autistic
1 / 14 (7.1%)
  1. Edmund J.S. Sonuga-Barke
  2. Susie Chandler
  3. Steve Lukito
  4. Myrofora Kakoulidou
  5. Graham Moore
  1. Niki Cooper
  2. Maciej Matejko *
  3. Isabel Jackson
  4. Beta Balwani
  5. Tiegan Boyens
  1. Dorian Poulton
  2. Luke Harvey-Nguyen
  3. Sylvan Baker
  4. Georgia Pavlopoulou

Abstract

Background There are increasing calls for neurodivergent peoples’ involvement in research into neurodevelopmental conditions. So far, however, this has tended to be achieved only through membership of external patient and public involvement (PPI) panels. The Regulating Emotions – Strengthening Adolescent Resilience (RE-STAR) programme is building a new participatory model of translational research that places young people with diagnoses of attention-deficit hyperactivity disorder (ADHD) and autism at the heart of the research team so that they can contribute to shaping and delivering its research plan. Aims To outline the principles on which the RE-STAR participatory model is based and describe its practical implementation and benefits, especially concerning the central role of members of the Youth Researcher Panel (Y-RPers). Method The model presented is a culmination of a 24-month process during which Y-RPers moved from advisors to co-researchers integrated within RE-STAR. It is shaped by the principles of co-intentionality. The account here was agreed following multiple iterative cycles of collaborative discussion between academic researchers, Y-RPers and other stakeholders. Results Based on our collective reflections we offer general guidance on how to effectively integrate young people with diagnoses of ADHD and/or autism into the core of the translational research process. We also describe the specific theoretical, methodological and analytical benefits of Y-RPer involvement in RE-STAR. Conclusions Although in its infancy, RE-STAR has demonstrated the model's potential to enrich translational science in a way that can change our understanding of the relationship between autism, ADHD and mental health. When appropriately adapted we believe the model can be applied to other types of neurodivergence and/or mental health conditions.

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: 17 Oct 2026 01:28.

Cited references
18
With a DOI
12
Without a DOI, from raw bibliography text
6
4 / 18 (22.2%) cited references include at least one author identified as autistic.
References with data to complete
3 / 18 (16.7%)
References with detected author names
15 / 18 (83.3%)
Without detected author names
3
Without a structured title
1
Without a stable identifier
5
References with raw author names still to review
1
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
61
From DOI or external metadata
61
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
1
36 / 61 (59.0%) names are linked to an author already present in AutiHub. 25 / 61 (41.0%) names are not yet linked.
Names linked to a person identified as autistic
13 / 61 (21.3%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 13 / 36 (36.1%). Distinct people identified as autistic: 12 / 57 (21.1%).
  1. Christine Sinclair , Andrea Grindrod (2022). Converging worlds: Fostering co-facilitation and relationships for health promotion through drama at the grassroots . In Insights in Applied Theatre: The Early Days and Onwards (pp. 49-61). Intellect Books.
    Type: Book chapter DOI: 10.1386/9781789385243_3 OpenAlex: https://openalex.org/W55714841
    OpenAlex
  3. Leah Levac , Scott Ronis , Yuriko Cowper‐Smith , Oriana Vaccarino (2019). A scoping review: The utility of participatory research approaches in psychology . Journal of Community Psychology, 47(8), 1865-1892. Wiley.
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    Type: Other DOI: 10.5040/9781472513489.0016 OpenAlex: https://openalex.org/W4247225389
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  6. Sarah Jane Mitchell , Anne-Marie Slowther , Jane Coad , Shazaan Akhtar , Elizabeth Hyde , Dena Khan et al. (2019). Ethics and patient and public involvement with children and young people . Archives of disease in childhood - Education & practice edition, 104(4), 195-200. BMJ.
    Type: Article DOI: 10.1136/archdischild-2017-313480 OpenAlex: https://openalex.org/W2785683124
    Crossref OpenAlex OpenCitations
  7. (2021). Briefing Notes for Researchers: Involving the Public in NHS, Public Health and Social Care Research (Version 1.0) . Briefing Notes for Researchers: Involving the Public in NHS, Public Health and Social Care Research (Version 1.0).
    Type: Other
    Crossref
  8. Maggie Inchley , Sylvan Baker (2022). Sound travels faster over water: Sonically re-designing institutional aural architecture with The Verbatim Formula . In Sonic Engagement (pp. 196-210). Routledge.
    Type: Book chapter DOI: 10.4324/9781003164227-19 OpenAlex: https://openalex.org/W4308587006
    Crossref OpenAlex OpenCitations
  10. (n.d.). 6 UK Research and Innovation. Guidance on Engaging the Public with Your Research. UKRI, 2022 ( https://www.ukri.org/manage-your-award/good-research-resource-hub/ ).
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    Crossref
  13. Edmund J.S. Sonuga-Barke , Stephen P. Becker , Sven Bölte , Francisco Xavier Castellanos , Barbara Franke , Jeffrey H. Newcorn et al. (2023). Annual Research Review: Perspectives on progress in ADHD science – from characterization to cause . Journal of Child Psychology and Psychiatry, 64(4), 506-532. Wiley.
    Type: Article DOI: 10.1111/jcpp.13696 OpenAlex: https://openalex.org/W4304606935
    Crossref OpenAlex OpenCitations
  14. Edmund J.S. Sonuga-Barke , Anita Thapar (2021). The neurodiversity concept: is it helpful for clinicians and scientists? The Lancet Psychiatry, 8(7), 559-561. Elsevier BV.
    Type: Article DOI: 10.1016/s2215-0366(21)00167-x OpenAlex: https://openalex.org/W3160677357
    Crossref OpenAlex OpenCitations
  16. Singer (2017). Neurodiversity: The Birth of an Idea . Neurodiversity: The Birth of an Idea.
    Type: Other
    Crossref
  17. Sinclair (2007). Converging worlds: fostering co-facilitation and relationships for health promotion through drama at the grassroots . Appl Theatre Res, 8.
    Type: Other
    Crossref
  18. Freire (2000). The Pedagogy of the Oppressed . The Pedagogy of the Oppressed.
    Type: Other
    Crossref