Embracing a full spectrum of researchers

I’ve been working in cancer drug discovery for just over four years now, having originally studied pharmacology before spending the best part of a decade in the pluripotent stem cell field. I’m based at the Cancer Research UK Beatson Institute in Glasgow where I mostly work on target validation and cell assay development, primarily in the context of immuno-oncology.

In the midst of all this, it was just a couple of years ago that I started to suspect that I might be autistic. And after a period of reflection and discovery during the less-than-ideal circumstances of a global pandemic, I finally received a formal diagnosis last summer.

It took me a while to realise, but I’ve been autistic my entire life. Autism isn’t something that comes and goes – it’s intrinsically linked to who I am and the way I experience the world. And although I encounter difficulties in certain situations, I’m not interested in the idea that this is down to a deficiency on my part. Like many autistic people, in the right conditions I thrive.

Drowning in data

But what does it actually mean to say that someone is autistic? Representation in the media and the arts is famously terrible, and parts of the medical and research community still view autism through a highly stereotyped lens. There are some characteristics that everyone agrees on though, and three things that often crop up relate to communication style, sensory experience and the nature of our hobbies and interests.

“I had a great time during my PhD viva and could have gone on all day, but I can probably hold a plank position for longer than I can comfortably engage in a casual chat over lunch.”

For me personally I think they all come from the same place – I’ve come to understand that I perceive sensory information at quite a high intensity and in great detail, and I also process language in a similarly granular manner. I can have good one-on-one conversations with people who communicate in a very considered way, but when people group together and loosen up, I tend to find it turns into an exhausting, incomprehensible mess. I had a great time during my PhD viva and could have gone on all day, but I can probably hold a plank position for longer than I can comfortably engage in a casual chat over lunch.

In science we often talk about ‘drowning in data’ where there’s so much to take in that it you can’t tell what’s going on anymore. That’s basically how it is with sensory overload. Sometimes there’s simply too much to process and it becomes impossible to deal with. The way autistic people respond to this can be highly variable – some will find themselves slipping into a withdrawn silence, others may experience full-on, reality-bending terror. It’s part of the deal, but it’s not all bad.

For instance, having heightened senses and a detail-focussed mind is very useful in the lab – I’ll always be able to tell if there’s something even slightly unusual going on with my cell cultures or my data, and if you ever need anyone to obsessively scrutinise your protocol, then I’m your guy. It can also lead to deep appreciation of quite niche things that don’t interest other people, which is helpful if you’re going to have to spend years trying to validate a drug target that only five people have ever heard of.

So, it’s a lot of hard work, but it’s totally worth it. For me it’s a matter of trying to stay on top of the constant tidal wave of information, taking care with boundaries and making sure I give my mind plenty of downtime.

Who gets to decide what’s normal?

I’ve only recently come to understand autism as an inherent part of a person that can’t be separated out. I‘m a biologist by training and we tend to talk about everything in terms of either normal, healthy physiology or disease. That’s fine for something like cancer – it’s not like anyone would ever want it so it makes sense to investigate what causes it and how we can beat it.

But that’s not the way things are with autism, and once you start to consider autistic people as a minority group who take pride in their identity, any talk of causes and cures becomes extremely distasteful. Who gets to decide what’s normal?

Having considered both scientific and personal perspectives, I’ve come firmly down on the side of autism being a valid part of human diversity and not a biological problem that needs to be fixed. Not everyone sees it this way, but it’s ultimately up to autistic people to make that call.

I’ve been fortunate in that I haven’t been held back too much during my education and career – in my experience you can get away with being a bit unusual in a field like drug discovery (not to mention stem cell research), but I also know that I’m speaking from a position of relative privilege. It hasn’t always been straightforward, but I’ve been given the benefit of the doubt more times than I can remember and I’m well aware that not everybody gets that.

With this in mind, I made a decision to try and do what I can to improve things. I’m pleased to say that I’m now helping to lead a disability and neurodiversity group at the Beatson Institute so that we have a safe space to discuss whatever we need to, and which we can use as a platform to help build a more inclusive and accessible work environment.

I’m grateful for the support I’ve received from my colleagues and my employer, but in wider society we still have a great deal of work to do. Disabled and autistic people have a long history of being left out of the discussions and decisions that affect our lives so profoundly, and in many areas this shows no signs of stopping. I’m not expecting things to change overnight, but if we’re going to make progress then it’s vital that we’re empowered to tell our stories on our own terms.

My diagnosis may have been around 30 years overdue, but I’m very glad to finally be adding my voice to the conversation.

If you are a neurodivergent scientist or a scientist with disability, we’d love to hear about your story and how it relates to your research. Get in touch here

Sebastian Greenhough is a principal scientific officer at the Cancer Research UK Beatson Institute in Glasgow.