This blogpost by Lorna Hamilton is part of the ISJ series on co-production (autumn-winter 2025). Different post-graduate researchers and academics affiliated to the ISJ share their thoughts about doing co-production as part of their research. The blogs follow a question-answer format.
Image by John Barkiple | Unsplash |
What drew you to doing and researching co-production?
My research focuses on neurodiversity across the lifespan – I’m particularly interested in how neurodivergent young people’s experiences of education shape their identity and wellbeing. Early in my career, I was lucky enough to work on a large-scale study of dyslexia and developmental language disorder (DLD). Within this collaborative project, my PhD studies examined how aspects of children’s home environment relate to their developing language and literacy skills. This involved going into family homes across Yorkshire, talking with parents, playing games and administering standardised tests with children as young as three years old. It was a formative experience – scientifically rigorous and deeply rewarding.
This kind of research is really important in advancing the scientific understanding of development and informing evidence-based interventions for children who need more support at school. But I was increasingly aware of what the measures we used didn’t capture that was nonetheless important in children’s home and school lives. Tasks or interview questions could be easy for some children to engage with, while others struggled to understand what we researchers were expecting of them. I began to wonder how we know that we are asking the right questions in research, and that train of thought led me to participatory methods and co-production.
What was your first experience of co-productive research and what did you learn from it?
Over the past decade, I’ve been exploring how to meaningfully involve neurodivergent young people in research. Two recent projects stand out:
- Project INC (Inclusive Neurodiverse Campuses), a participatory action research initiative with neurodivergent university students and staff.
- DIVERT, a collaborative study co-producing a distress tolerance intervention with young people who have experience of self-harm.
One powerful lesson from Project INC was the importance of consulting on recruitment protocols, especially when working with participants from minoritised groups. In Project INC, our participatory advisory group told us not to use diagnostic terms like ‘autism’ or ‘ADHD’ in our recruitment materials, predicting they’d deter students who often feel scrutinised in educational settings. Instead, they designed beautiful posters that spoke to lived experiences: ‘Do you get so into things that you forget to eat and drink?’ ‘Do you struggle with loud spaces and weird textures?’ The young people’s expertise transformed engagement with the study. We learned similar lessons in DIVERT – terms widely used in clinical practice, including ‘self-harm’, can put young people off taking part in research.
This kind of insight is invaluable—and it’s one reason why neurodivergent people must be directly involved in research that affects their lives. The Spectrum 10K controversy is a stark reminder of what happens when meaningful collaboration is missing.
What are the challenges of co-productive research, and how have you approached these?
Challenges often come from a mismatch between traditional research infrastructure and principles of co-production. Funders and ethics boards can be wary of proposals that aren’t fully mapped out—yet that flexibility is essential when working in partnership with experts by experience. We’re fortunate to have a Chair of Ethics who understands these methods, but it can be frustrating when a lack of understanding acts as a barrier to getting participatory research done.
Managing the expectations of the stakeholder groups you are working with can also be challenging. Listening to everybody’s insights and valuing different forms of expertise equally is vital, but it’s also important to be transparent about what is possible within the confines of time, budgets and spheres of influence. When working with neurodivergent children and young people, it is particularly important to consider inclusion and accessibility carefully. This allows co-researchers with diverse communication profiles to have equal opportunity to shape the project, whether that’s through dialogue, text, or other means of expression. If not, we risk reproducing the very exclusions we aim to dismantle.
What does co-productive research allow you to do that other methods don’t?
Co-production has elevated the quality of the data generated in our research projects, and thus fostered a more meaningful contribution to knowledge. Our early attempts to conduct interviews with autistic young people were well-intentioned, but not universally accessible. Taking the time to work in collaboration with young people and their families to tailor research protocols to their interests, strengths and communication preferences enables authentic participation.
Beyond that, it builds trust and gives us researchers a clearer insight into the many barriers that neurodivergent young people encounter when differences are not accommodated. For example, one young person found it difficult to talk about her experiences at school, but could create amazingly detailed comic scripts to illustrate some of the things that were causing distress through the school day. For another, talking about potentially difficult topics was much easier when walking around with a researcher rather than sitting down at a table.
I really enjoy young people’s creativity and the unexpected turns that co-produced research can take. As academics, we can get stuck in our disciplinary and methodological specialisms – it’s helpful to have our assumptions challenged! Co-production reminds us that there’s more than one ‘right’ way to do things and that being wrong can be a gift.
What one writer or concept has been most influential on your approach to co-production?
Steve Silberman’s Neurotribes transformed my understanding of how autistic people have historically been excluded from research—and the damaging consequences of that exclusion. While Silberman doesn’t directly address research methods, his storytelling is powerful in highlighting the risks of outsider-only research in this field. Sadly, we’re seeing this dynamic play out once again in contemporary political narratives, including dangerous and unevidenced claims about what causes autism. This socio-political backdrop has reinforced to me how essential co-productive methods are in neurodiversity research.
More recently, Monique Botha’s work on epistemic injustice and autism is always on my mind when doing research – or indeed teaching about neurodiversity. Their account of encountering stigmatising, alienating accounts of autism in the Psychology curriculum while living the reality as an autistic undergraduate student profoundly influenced my thinking. Botha continues to do trailblazing work in documenting how knowledge about autism is generated, and the processes by which research often dehumanises neurodivergent people. Research led by autistic and other neurodivergent people is the solution.
Has being involved in co-production project changed the ways you think about research? Or think about the world?
Absolutely. It has made me reflect on the way that academic conventions and power structures have shaped what we know about neurodivergent people. I still place huge value on rigorous, scientific study, but I also believe it’s vital that researchers are reflexive and are willing to admit when we’ve got things wrong. I am lucky to work with a fantastic group of colleagues and post-graduate researchers in our Research on Neurodiversity, Environment and Wellbeing (ReNEW group), many of us combining relevant lived experience with research expertise. The work happening in ReNEW is forging new ways of co-productive working with neurodivergent people in research.
Historically – and unfortunately still in some places – the scientific study of autism and neurodivergence has caused direct harm. Working with, and learning from, neurodivergent children and young people has made me more aware of the importance of humility, reflexivity and an openness to tear it all down and start again from the beginning in research!
If you’d like to read more:
Project INC: Inclusive Neurodiverse Campuses (2025). Project report available at: https://www.yorksj.ac.uk/media/content-assets/research/institute-for-social-justice/Project-INC-report-2025.pdf
Hamilton, L.G., Williams J., Neilson, D., & Petty, S. (2025). Inclusive neurodiverse campuses: A participatory approach to understanding neurodivergent belonging in higher education. Preprint available at: https://osf.io/preprints/psyarxiv/7pf68
Lewis, K., Hamilton, L.G., & Vincent, J. (2024). Exploring the experiences of autistic pupils through creative research methods: Reflections on a participatory approach. Infant & Child Development, 33(3), e2467. https://doi.org/10.1002/icd.2467
The DIVERT study. Video available at: https://www.youtube.com/watch?v=kUvP8p9fkVo
