On neurodiversity in the PhD – the silence is deafening?


I  didn’t expect to find myself crying.

I don’t tend to study emotional topics. I’ve studied ‘troubles talk’administrative systems and post PhD employability, but this research on neurodiversity and the PhD experience is different. This is definitely the first time I’ve been moved to tears by a piece of academic writing. I guess it’s because this research feels, well – personal.

I am, I guess, ‘neurotypical’ – if there is such a thing (as Tony Armstrong put it, there is no ‘brain ‘pickled in a jar’ in a museum somewhere that defines ‘normal’). The more I read about neurodiversity however, the more I question myself. I have some ADHD traits, such as the ability to slip into a state of hyperfocus and some autism traits, like associational thinking and a strong need for routine. I don’t, however, fit the diagnostic criteria for either type of neurodiversity and I don’t experience my ‘quirks’ as disabilities. I am, for example, relatively comfortable with ambiguity in social situations and I don’t struggle to prioritise a ‘to do’ list or experience ‘time blindness’.

But many of my family members do identify as neurodiverse; both my genetic family and the one I married into. My family only started getting formal diagnoses in the last 15 years or so, after our children entered school. Our children all found school hard in various ways. To their credit, teachers didn’t let them flounder; education has improved drastically since the 70s and 80s. Neurodiversity is identified and children are taught study and advocacy skills. By contrast, most adults in my family, including myself, struggled at school, either academically or socially, but we just thought we were… weird? Nerdy? Different?

Now we have names for this difference: Autism, ADHD, OCD, Dyslexia, Tourettes.

Everyday I witness the incredible strengths and talents of my neurodiverse family. I’ve walked alongside them in various struggles with school and life. I’ve celebrated success, helped, where I can… And I’ve sometimes been less than helpful and empathetic. My neurotypical-ish self can find my neurodiverse family members’ behaviour mystifying, annoying and exasperating. Conversely, my neurotypical expectations and demands have been annoying, irritating and unreasonable for them.

When I get frustrated or upset I try to remind myself: we’re all on a journey of discovery here. We all need to find reserves of love, gentleness and patience with each other. Most of the time I think we do ok.

Over the last decade or so, as my own awareness of neurodiversity has grown, I can’t help but notice how many academics, including PhD students, are similar to members of my family. I think it’s one of the reasons I find academia a comfortable professional world (the people are literally ‘familiar’).

So many people in academia have the ‘special interests’ and intense focus that is the signature of Austism. Others have the restless itch of curiosity and creativity so characteristic of ADHD. Along with the talents there are struggles. People on the Austism spectrum can be mystified by the intensely social nature of academia at a PhD level, where you are expected to act more like a staff member than a student (including getting involved in departmental dramas and politics). People with ADHD can find the scope of their PhD gets wildly out of control as they fall down many rabbit holes opened up by their curiosity.

Neurodiverse brains can also struggle with exerting the levels of concentration required for long stints of reading or analysis, but for different reasons. Some people have sensory issues around light and sound, others just have trouble sitting still.

Of course, because no two brains are the same and you can, like one of my nephews, be Autistic and have ADHD at the same time. You can also, like this same nephew, have amazing talents, that flourish under the right conditions. Or you can, like others in my family, be averagely talented (it’s abelist to demand that neurodiversity be accompanied by ‘giftedness’ some other domain). Some people, like myself, have some neurodiverse traits, but don’t meet the diagnostic criteria for a specific condition. No two brains alike, right? So the experience of neurodiversity is huge and varied, and intersects with other identities, like gender, class and ethnicity.

In other words, it’s complicated.

I’ve formed a (probably unprovable) theory that there is more neurodiversity in our universities than in almost any other profession except, perhaps IT. But at the same time neurodiversity is mostly hidden, invisible, denied and ignored in our discussions about academia and academics. There is a paucity of research on the topic of neurodiversity in working academics. What scholarship does exist, such as this paper on making autistic spaces in academia, radically questions academic ‘norms’ and I am so here for it. But while I celebrate those scholars doing the work, I suspect many individuals feel fear, uncertainty and doubt about disclosing their neurodiversity.

To get by in life, neurodiverse people often have to ‘mask’: that means pretending to be neurotypical. Masking requires constant monitoring of the self and others during each and every social interaction, which is, frankly, exhausting. Masking adds an extra burden to functioning in an already busy, competitive academic environment, but people do it because they are too afraid to disclose their neurodiversity. Who wants the label of ‘disabled’? Especially if you just experience your neurodiversity as a part of who you are, not a ‘condition’ and needs to be ‘fixed’.

The stigma is real.

Since I started talking about neurodiversity on podcasts, social media and here on the blog, many people have disclosed their neurodiversity to me. And believe me, there are neurodiverse people in all areas of academia: in executive university management, high level administrators, well known scholars, as well as lecturers, postdocs and PhD students. Clearly being neurodiverse does not stop you from succeeding in academia, but it can make everyday academic life much harder.

Neurodiverse academics are what used to be called ‘high functioning’. Many have never sought a diagnosis because, well – they don’t feel ‘disabled’ until they face specific barriers. They may even, as Helen Kara and Aimee Grant argue, experience their neurodiversity as an academic advantage. The term ‘high functioning’ has fallen out of use with the growing recognition that it is often the world, not the person, that is the source of the disability. When the world is structured for neurodiverse people to succeed, they can and do. When the structure is not set up well, or it changes suddenly, neurodiverse people can struggle.

People with ADHD, for instance, sometimes struggle at PhD level, despite succeeding well enough in course work to get there. Compared to coursework study, the flexible structure of the PhD, both in terms of time and task, must be attractive for people who enjoy following where their curiosity leads and sometimes struggle to turn up places on time. But perhaps the structures of coursework study, which seemed so restrictive and painful, were actually quietly helping that neurodiverse brain succeed.

The ‘episodic’ nature of coursework, which rewards short bursts of intense effort, could be more ADHD friendly than the slow work of a PhD which involves a lot of what gamers would call ‘grinding’. Likewise, the clearly mapped pathways to learning and rubrics for achievement in coursework can help people on the autism spectrum manage anxiety and stress. Neurodiverse people often need and want clear guidance and instructions, but many supervisors are reluctant to provide them, under the mistaken assumption that this will hinder the development of scholarly independence and creativity.

How very neurotypical.

I have a second (totally unprovable) theory that Academia was originally built to accomodate neurodiverse populations, but has become less hospitable over time.

Think about the monastic style university colleges in the Oxbridge tradition. I’m inside Wolfson College at Cambridge as I write this, sitting at a comfortable desk looking out over a sunny garden. It’s secluded, quiet, solitary – but it doesn’t have to be. A college, in the Oxbridge sense, is like a giant academic share house, set up to support all aspects of academic life. I could sleep here if I wanted. A few steps away from my charming office is a dining hall, where I can be fed and find a ready made group of nerdy friends to hang out with.

The ritualised nature of the college rules here keep tripping me up – but at least they are explicit. They will tell you what dinners are formal, which are not, when to eat, where to put your dishes, and what kind of interaction is permitted in the dining hall, vs the club house and the common room. The college porters, the literal gate keepers at Cambridge, can probably solve any logistical problem, as well as answer questions, provide me with keys, find my lost stuff and tell me to stop walking on the grass.

And being a member of a scholarly community inside universities like Cambridge and Oxford used to be – and in some ways still is – for life. I chatted to one senior college academic who looked after the ‘Bachelor Fellows’; academics who had lived their whole life in college. These elderly academics were being cared for in a form of ‘assisted living’ within the college, rather than being moved out into retirement homes. I also met elderly academics who still turned up to college dining halls to maintain their connection to community. So humane – and exactly how I would want to be cared for in my twilight years.

These colleges were designed to house a collection of (white) men who dedicated their whole lives to knowledge. If they taught at all, it was small group or one on one learning, which is less of a sensory challenge than a noisy class of 30 or 40 in a room lit by fluorescent lights. For a long time these men were expected to be celibate, which probably didn’t trouble those amongst them who found relationships difficult. Issac Newton was famously socially awkward, which has prompted at least one biographer to diagnose him as autistic. The cloistered college life clearly suited Newton – I mean, you can’t argue with the results, at least in terms of deliverables.

The Oxbridge college is a machine for thinking with where people who couldn’t, or wouldn’t, look after themselves were cared for. Privileged? Yes? Exclusionary? Hell yes. Neurodiverse friendly? Also, maybe yes?

The corporatised, neo-liberal, cash strapped universities that most of us inhabit now are no longer collegial machines for thinking with. We do our own laundry now – and fill in many forms, manage our social lives and teach larger numbers of students as well as try to compete for money, resources and status. Many of us neurotypicals struggle with the contemporary academic life,  but the struggle intensifies for the neurodiverse amongst us.

To make academia neurodiverse friendly again – and in the process, make it better for all of us – is going to take effort. The model of the Oxbridge college is maybe not the way forward, but to find the way, we need to first have this conversation. In particular we need to make space to help neurodiverse people feel more comfortable ‘coming out’ and tell us what they need to succeed.

The conversation has started. The academic piece that moved me to tears was from a talk called ‘Don’t mourn for us’ by Jim Sinclair. It’s about parents acceptance of their autistic children, but the message is widely applicable beyond that:

“We need you. We need your help and your understanding. Your world is not very open to us, and we won’t make it without your strong support. Yes, there is tragedy that comes with autism: not because of what we are, but because of the things that happen to us. Be sad about that, if you want to be sad about something. Better than being sad about it, though, get mad about it–and then do something about it.”