How science can do better for neurodivergent people: Disability can affect anyone

JENNIFER LEIGH: Disability can affect anyone

Reader in the School of Social Policy and Social Science Research, University of Kent, UK.

I was only diagnosed with ADHD earlier this year. Receiving a late diagnosis can be challenging, and it has encouraged me to re-evaluate many aspects of my life, including school, university and work. Having the diagnosis felt validating. It was also a relief; it gave me more insight into myself and allowed me to start the process of becoming more effective in my work and life.

However, it is really important to say that self-diagnosis is also valid for many, because gaining a formal diagnosis for a neurodivergence or a chronic illness is not an equitable or easy process. It is gendered, racialized and discriminatory. This is particularly true for those who can achieve academically, or who can ‘mask’ effectively, because they are more likely to fall through the gaps in the system. They are not ‘failing’, so they are not seen to require help or support.

A large proportion of my work at the University of Kent, UK, concerns marginalization in science and lived experiences of ableism in academia; it is part of a wider effort to use creative practices to bring about social justice. This means that the challenges faced by people as a result of neurodivergence combine with challenges arising from other factors, such as gender, race, disability, sexuality and ethnicity.

There are still many negative perceptions around neurodivergence, chronic illness and diversity. This is particularly the case in academia, where we are expected to be intellectually excellent — and to work in an environment that is incredibly competitive and that demands hyperproductivity as a matter of course. It can be very difficult to admit to having a difference or a vulnerability that others might think means you are not capable of doing your job. For example, having different ways of communicating can cause difficulties that are perceived as a personal deficit. One reason for increases in late diagnoses such as mine could be that the pandemic stripped away many people’s networks and support systems. This exposed places and ways in which they struggled, while at the same time removing many situations in which they might have previously masked their neurodivergence.

Society still has a lot of catching up to do. People still assume that being neurodivergent is a deficit. Shockingly, I recently heard a clinical psychologist express the view that autistic people are unable to hold down a job, have friends or form a relationship — and this from someone responsible for diagnosing autism in adults. Equally, there are many misperceptions around ADHD. This is damaging, because it means that people can be denied a diagnosis and the potential to understand themselves better, find a community that they can feel part of, get support and gain access to medication (if appropriate).

In academia, disability, chronic illness and neurodivergence are seen as things that, for the most part, affect students rather than staff. There is little support available — and, for many, the risks of disclosure tend to outweigh the benefits.

Groups such as the National Association of Disabled Staff Networks’ STEMM Action Group are working hard to highlight issues affecting disabled scientists, work with funders and higher education institutions, and provide recommendations on accessibility. In a recent paper4 on accessible labs, my co-authors and I state that the easiest and most cost-effective way to support neurodivergent (and all) scientists in the lab is to employ qualified and expert technicians, giving them a career structure and opportunities for progression and recognition. This ensures that the environment and equipment is properly maintained, thus reducing noise and ensuring that labs are clear and free from clutter. It also has the benefit of providing and valuing alternative career paths for scientists, as advocated by funders such as UK Research and Innovation and the Leverhulme Trust.

The fact that funders are recognizing the need for change is encouraging — as are the changes we are seeing in some research communities, driven by networks such as the international Women in Supramolecular Chemistry advocating for equality, diversity and inclusion. However, we need to ensure that there is follow-through, and that we all work together to bring about positive changes in terms of policies and practices.