Up to the mid-1960s ‘researcher’, in the Euro-Western paradigm, meant ‘white middle-class able-bodied man’. Reports of research that referred to the researcher always used the pronoun ‘he’. In the 1960s women in the UK and US began to conduct research, challenging the idea that men could effectively study women’s experiences. Disabled people joined in during the 1970s on an equivalent basis with respect to able-bodied people. Mental health survivors began conducting research in the 1980s, and people with intellectual disabilities became involved in the 1990s. Indigenous scholars have demanded sovereignty over research in their communities, rejecting extractive models where outsiders take knowledge without reciprocity or true understanding. By the 2000s there was a groundswell of support for involving ‘experts by experience’ in much research in social care, health, and a range of other disciplines.

We write this post twenty-five years after the turn of the century. At this point there is no doubt that involving experts by experience improves research practice, findings, and implementation. So we ask: why is so much research about underserved people still done without the involvement of those people?

Neurodivergence: a case study

Our own area of interest is neurodivergence so we will use this as a case study. We are both neurodivergent researchers, funded by ISRF to work with our colleague Kate Fox towards a definition of NeuroDiversity-Affirming Space (NDAS). NDAS is a phrase which is increasingly being used but has no clear definition. We will work with other neurodivergent people to explore what it means to create and inhabit environments – physical, social, institutional – that don’t only tolerate neurodivergent people but actively affirm neurodivergent ways of being. From this we will formulate a definition which we anticipate will be useful for institutions in all sectors that are interested in supporting their neurodivergent staff, customers, and others with whom they interact.

It was particularly important for our research to be neurodivergent-led because research, and research-adjacent activity, has harmed neurodivergent people in a number of ways. The male bias in research has harmed neurodivergent women, many of whom have been – and continue to be – mis-diagnosed and/or diagnosed as neurodivergent very late in life. Among other things, Autistic women are mis-diagnosed with eating disorders or learning disabilities; women with ADHD are mis-diagnosed with anxiety or mood disorders.

There is also significant stigma attached to neurodivergent people and this affects our quality of life. Neurodivergence is diagnosed by the medical profession, and this can be problematic because receiving a medical diagnosis implies the existence of treatments to alleviate problematic ‘symptoms’. This deficit-based approach to medicalising neurodivergence is a form of ableism which has led directly to some very traumatic experiences for neurodivergent people, such as the autistic people who were subjected to Applied Behaviour Analysis therapy to make them appear more “normal” and then ended up with post-traumatic stress disorder due to the resulting disconnect between their internal and external worlds.

However, people with ADHD do sometimes find medication useful for managing specific aspects of their neurodivergence, such as difficulty in focusing on tasks or controlling impulses. But the widespread pathologizing of all aspects of neurodivergence can give the impression that neurodivergence is something that can be cured. This leads some researchers towards projects that look very much like eugenics. Collectively, these abuses of research and research-adjacent activity constitute decades of epistemic violence which has caused a breakdown of trust between neurodivergent communities and researchers.

This is one reason as to why it is essential for research about neurodivergent people to be done by, and/or with the full involvement of, neurodivergent people. Our view is that rather than a collection of disorders, neurodivergence reflects a range of different ways of being which form part of natural human diversity. There is a mounting body of evidence showing that neurodivergent people can, and do, make important contributions to research. Neurodivergent researchers have created significant breakthroughs in understanding. One example is Dinah Murray’s work on monotropism, or the benefits of hyperfocus; this was initially related to autism but is now understood as also relevant to ADHD and probably other forms of neurodivergence too. Another is Damian Milton’s work on the double empathy problem. Autistic people were historically blamed for having poor social communication skills because they didn’t always understand non-autistic people. Milton demonstrated that non-autistic people also find it hard to understand autistic people so it’s a two-way breakdown in communication. We suspect this also applies to interactions involving people with other forms of neurodivergence.

The stigma around neurodivergence makes it difficult for neurodivergent people to get involved in research – or, at least, to do so openly. Research ethics committees typically consider neurodivergent people to be a ‘vulnerable group’, who must therefore have decisions made paternalistically for us, and/or discount the value of experts by experience. Most neurodivergent academics are not open about their neurodivergence within their workplace, and the difficult experiences of some who are suggest that non-disclosure may unfortunately be wise. This stigma-driven reticence is likely to be replicated in other forms of employment. Indeed, neurodivergent people are more likely to be unemployed than neurotypical people. Of those who are employed, one in five have experienced harassment or discrimination at work because of their neurodivergence, and 65% fear discrimination from management. 

The message is clear: most workplaces, including academic and other research institutions, remain fundamentally inhospitable to neurodivergent ways of being. This is one of the many reasons why NDAS is necessary and so needs to be defined and publicised. And that must be done by, and with, neurodivergent people.

Other examples and their impact

We have focused on neurodivergence but sadly there are many other examples of epistemic violence leading to deep mistrust of research and research-adjacent activities. The mid-20^th century atrocities in Tuskegee, Alabama, US, where poor Black men were lied to by researchers about their health status, leading to many deaths in their community, still causes mistrust of the medical establishment. Research was used to abuse Indigenous peoples in various ways over many years, again causing mistrust which persists to this day.

This kind of mistrust matters. It means research findings are met with scepticism by the very communities they claim to serve. It means many people avoid participating in studies, sensing that their perspectives won't truly be valued. And it means that even well-intentioned research struggles for legitimacy when the power dynamics remain unchanged. Until people are recognised not just as providers of data but as essential knowledge-makers, this epistemological violence will persist, and with it, the growing divide between research and the communities that researchers and funders claim to want to help.

So what can we do about this?

We have three suggestions.

First, stop valuing academic knowledge more highly than other forms of knowledge. Practical, emotional, and experience-generated knowledge (among other types) are every bit as valuable. We need them all, for research in particular, and for life in general.

Second, make disclosure safer. Every researcher is shaped by our experiences, and we all draw on those experiences in our work, whether we acknowledge that or not. It makes no sense to have a mental health researcher who cannot disclose her own experience of post-natal depression, or a substance misuse researcher who does not feel able to share their own experience of using street drugs, or a homelessness researcher who keeps quiet about the months he spent sleeping rough.

Third, fund experts by experience to conduct research within our communities. We have written elsewhere about how rare it is to find such funding for which we can apply. We are very grateful to ISRF for bucking this trend, and we call on other funders to join them.