The merits of research that stems from and is informed by lived experience are widely recognised. However, research that is truly based in, and steered by people with, lived experience is rare. Funding for such research is rarer still.

Research funding in the UK is mostly available to academics, some of whom may also have lived experience of one or more phenomena. However, academics also work within constraining frameworks that may prevent them from doing truly participatory or co-created research, or from taking other measures to put people with lived experience at the centre of their projects. In particular, the disability policies and practices of most universities mean that academics who are, or become, disabled often leave academia, and academics who are neurodivergent sometimes fear to disclose that identity due to the risk of being misunderstood and mistreated by the organisations where they work.

I am a neurodivergent independent researcher and scholar. Like many neurodivergent people who were able to get a job, I did not cope well with being employed. A recent report shows that only 3 in 10 autistic people of working age in the UK have jobs. Other forms of neurodivergence, such as ADHD, dyslexia, and anauralia, can also present barriers to employment. I have been able to create a sustainable self-employed career through a combination of support, luck, and determination. But I have never had access to any research funding – until now. The Independent Social Research Foundation (ISRF) has awarded me £7,100 to work with two neurodivergent Co-PIs, Kate Fox and George Watts, to research and develop a definition of neurodivergent-affirming space (NDAS).

It is crucial for this research that we are all neurodivergent ourselves. The neurodivergent community has been battered by neurotypical researchers, who want to diagnose, classify, treat and ‘cure’, i.e. eradicate valuable elements of our unique identities. As a result the community holds an understandable level of mistrust for researchers who are not neurodivergent. Consequently, it is likely to be a lot harder for neurotypical researchers, than for us, to find people willing to participate in researching neurodivergence.

NDAS is a concept that is gaining traction, but which has no formal definition. Many neurodivergent people create NDAS in our homes and we recognise it when we find it elsewhere. We know there is more to NDAS than dimming the lights and turning the sounds down, helpful though those actions can be. Soon after we had been awarded the funding, the three of us attended the Wellcome Trust funded Critical Neurodiversity Studies conference in Durham. My notes from that event include some words which may prove relevant: safe, understanding, supportive, relaxed, flexible. Conversely, NDAS is definitely not a space in which all needs can be met; that would be impossible. But these are preliminary thoughts. We will work with others from the neurodivergent community to formulate a clear definition, through both in-person and online workshops for maximum accessibility.

The potential benefits of defining NDAS are huge, for many sectors such as industry, public services, retail, hospitality, and of course academia. Academia appeals to a significant proportion of neurodivergent people, yet it is notoriously neurodivergent-unfriendly. As I have also written for the LSE blog, creating more supportive environments for neurodivergent scholars could also prove valuable for harnessing the particular skills these researchers bring to bear in the social sciences. A clear definition of NDAS would therefore help universities to better serve their neurodivergent students and staff.

It is interesting to note that both our research and the Durham conference are supported by endowment-based charitable trusts rather than public funds. I am currently mentoring the neurodivergent PI of a longitudinal project with a neurodivergent research team and neurodivergent participants, which is based in academia, but also funded by Wellcome. I have written previously on the LSE blog about the frustrations of being unable to access public research funding distributed via UKRI because I am an independent researcher. I now realise it is near impossible to access public research funding distributed via UKRI for researchers with lived experience who belong to the community they are researching, unless they are also employed in academia.

I recently searched the UKRI website for “lived experience” and there was evidence of one project demonstrating good practice, which is both encouraging (the ‘good practice’ part) and depressing (just one project?). UKRI seems stronger on ‘public involvement’, speaking of ‘researchers and the public’ working together, as if researchers are not part of the public. Given the low levels of neurodivergent people in employment, there is likely to be a sizeable overlap between independent researchers and neurodivergence. The UK Government is taking steps to improve employment prospects for neurodivergent people, which is good news. Perhaps the Government could also consider making researchers with lived experience eligible to apply for public research funding. In the meantime, our community is hugely grateful to those foundations willing to fill this gap and help us to move forward for everyone’s benefit.