What does neurodiversity really mean?

The term “neurodiversity” owes its origins to the Australian sociologist Judy Singer, who proposed it in her 1998 Masters thesis “Odd People In”. There, she’s highlighting that, since everyone’s brain develops in a unique way, no two brains are ever the same, and so there is no meaningful definition of “normal” when it comes to what is inside our heads. But a quarter of a century later, the language - and understanding of this concept - is still lagging. And this, as Jola Layinka explains to Chris Smith, is retarding the crucial interdisciplinary collaborations between genetics, psychiatry, the social sciences and other fields of research that are needed to understand conditions like autism, ADHD and dyslexia...

Jola - I find that the easiest way to explain neurodiversity is to think of biodiversity. It's one of the first things you learn in biology class, right, it's about the variation of all living things. So in terms of neurodiversity, it's that unique and complex variation in the way we think and neurological functioning. So it relates to conditions like autism and ADHD because we all have these autistic ADHD traits in different degrees leading to very diverse ways of thinking. So those who are diagnosed with these conditions are just on the extreme higher end of this natural natural distribution. So neurodiversity just encompasses this variation in thinking as a whole.

Chris - Indeed, because we do come around to the idea that, really, everybody has a range of different traits, don't we? Exactly. Yeah. And, and it's, it's more kind of how many or to what extent those traits are manifest that give you your degree of neurodiversity?

Jola - Exactly. That.

Chris - Is that the point you're making here? That previously we've tended to put conditions in boxes?

Jola - Exactly. So that's where you find that categorical approach where if you have this number of traits, then you are autistic. And if you have this specific number of traits, then you have ADHD. But actually what we find is these traits are overlapping with each other. So using that neurodiversity approach, we can shift towards more of the dimensional approach where we can measure these traits as the spectrum that they are.

Chris - Does the language we use though support that kind of approach? Because where we have historically adopted a kind of a diagnosis-based, "you have this condition, and this condition", rather than "you have this range of traits", if the language isn't there to define it, then scientists can sometimes struggle to agree on what they're actually saying.

Jola - Exactly. Which is why we kind of need to move slightly away from this deficit medicalisation approach to using more inclusive language that's not just focused on these deficits so that we can really portray this dimensional way of thinking in terms of neurodiversity, in terms of these neurodevelopmental conditions.

Chris - But do scientists actually agree on what they are studying in terms of if you are studying autism, does one person's definition of I'm studying autism, agree with another who might be interested in some of these trait based approaches and, and actually you've got lots of people working on the same thing and they don't realise it?

Jola - Exactly that. Absolutely not. There is no standardisation. The clarity of the terms is actually one of the difficulties in this field. So we need to come together across disciplines to have this agreement where we can reduce all these overlapping terms that are used to describe the same things. Like you said, we have a lot of people actually investigating the same or similar things, but they're not aware of it. It shouldn't really be as difficult as it is. So this is why that interdisciplinary work and clarity between terms working with each other and communicating with each other better needs to happen.

Chris - And is it a relatively easy landscape to get funded in this space?

Jola - In terms of funding, there's actually a lot of variation in terms of which disciplines get funded more so than others. So you see a lot of funding towards genetic or neuroscience research where it's about finding targets for personalised interventions and finding ways to further the intervention a lot later down the line. But a lot of people from these neurodiverse communities are actually wanting to see improvements on their day-to-day lives. They're wanting to see improvements to programmes that are supporting them now. So it's about redirecting some of this funding to promote that, not necessarily stopping any of the great work that's happening, just creating a bit more balance.

Chris - So what's the, the ultimate goal here? If I was talking to you in 10 years time and everything you've written here comes to pass - and does it in record time! - <Laugh>, what do you hope the shape of the conversation we'll be having will be? What do you hope will have happened?

Jola - Well, one that we agree more on the terms that we are using. We include neurodiverse communities a lot more so that we are actually researching things that are important to them as well. And the communication between researchers, between disciplines has improved. So there's a lot more interdisciplinary work that's actually being conducted. And the communication between those communities has improved. Things like patient and public involvement, co-designing studies with people from these communities and, and things like that.