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Our changing understanding of neurodivergence

In an article published in 2020, Sue Fletcher-Watson, Professor of Developmental Psychology, and Duncan Astle, a cognitive neuroscientist, argued that there’s a lot more to developmental disorders than their clinical definition, and they can be associated with difficulties not captured by a diagnostic label. BOLD’s coverage of that article, with comments from Astle, led to some interesting discussions on social media. Annie Brookman-Byrne follows up with Fletcher-Watson about some of the relevant issues.

Annie Brookman-Byrne: There was some discussion online around the fact that researchers have been pointing out for years that developmental disorders are not specific. Do you think anything has changed?

Sue Fletcher-Watson: People have been pointing this out for years, but it just doesn’t seem to have translated into action. If something has changed, it’s probably that our research methods have opened up – our options have expanded, like the capacity to recruit really big samples. There’s more support from funders for large-scale recruitment and combining datasets, which are required for research that isn’t bound by hard diagnostic boundaries.

“People don’t fit into these clean categories – they have a complex profile of strengths and needs that change depending on the context.”

In transdiagnostic research you start with the thing you’re measuring, rather than with the clinical label. So, you might look at the diversity of language profiles across a whole group of people and ask whether a given profile relates to any clinical label. Taking that more dimensional approach and recruiting diverse samples provides greater potential to challenge diagnostic boundaries.

ABB: Do you think the message that disorders are not specific will be heard?

SFW: I think it is getting through, partly because of the increasing role of communities in this kind of research. There’s more and more collaboration among parents, teachers, speech and language therapists, and most importantly, with neurodivergent people themselves. Almost all of those stakeholders say that people don’t fit into these clean categories – they have a complex profile of strengths and needs that change depending on the context. A child might be thriving at school, from a teacher’s point of view, but then have a total meltdown when they get home, for example.

There’s also a broader emphasis on the impact of research, on making a difference. You’re not going to make a difference in real people’s lives if your research takes place on an alternative plane of reality where everyone is a pure, clean version of a diagnostic category.

ABB: I guess a lot of parents and teachers have been saying for years that you can’t put a child in a box. I wonder how that idea became so widespread in the first place – something your co-author Duncan Astle touched on when he spoke with me.

SFW: It’s partly about how research is set up as an industry. Historically, research that has been easy to publish and well cited shows neat and tidy significant differences with a nice concise theoretical explanation. Findings like that are easier to communicate than the message that everything’s messy, and we don’t understand it very well.

“Labels are also important to people’s identities.”

ABB: There was a conversation online about the terminology of developmental disorders, raising the question of whether the term ‘disorder’ is pathologizing – that is, whether it stigmatizes individuals with disorders as abnormal. What is your view?

SFW: There’s no doubt that the term ‘disorder’ is pathologizing. We should get rid of it. Research into adult psychopathology has left a really influential legacy in terms of how we understand early developmental diversity. When you have a brain injury, like a stroke, head trauma, or a neurodegenerative disease like dementia, that suggests that there is a healthy brain that has somehow gone wrong.

When you’re looking at people born with a brain that operates in a certain way – an autistic brain or an ADHD brain, if I can use that language – that disease model doesn’t work. It takes root in part because children don’t get diagnosed at birth, they get diagnosed at three or later. That allows people to think that maybe they weren’t autistic before and something went wrong. That’s just not accurate.

I’ve seen people suggest the term ‘condition’, but I don’t think that’s an improvement, it’s a wishy-washy euphemism. I talk increasingly about neurodiversity and neurodivergence. It is a less judgmental way of talking about deviations from the neurotypical majority pathway. With autism, we can just call it autism without the ‘disorder’, and dyslexia or dyspraxia are maybe okay.

“We just want to withdraw the negative value judgement.”

ABB: Do you think those groupings are likely to remain? We’re still talking about dyslexia and autism, even though we know they’re not specific.

SFW: I would probably like us to be in a post-diagnostic world, but I haven’t thought that through in enough detail to be totally confident it would be an improvement.

A world where no-one gets a diagnosis sounds terrifying to lots of people. It sounds like a world in which your needs won’t be recognised and there’ll be no adaptation to those needs. There’s probably a quicker way to move from identifying that someone has needs to providing support for those needs, without going through the intermediate step of assigning them a clinical diagnosis. Clinical diagnostic labels don’t map onto the strengths that people have and the needs they might want support with. Labelling is a sort of detour on the way, but it’s very functional in our current system because it unlocks services.

Labels are also important to people’s identities. They create community and an opportunity to find people who share the same experience. A worry about removing diagnostic labels is that people might find it hard to connect with others in similar circumstances.

Aiming for a society in which we do not judge or pathologize each other based on our differences is a good thing. But the goal should not be a society that pretends there are no differences and that no-one needs help. When the narrative around neurodiversity is that “everyone’s different and that’s okay”, it can sound as if everyone just needs to muddle along. We don’t want to withdraw support or understanding – we just want to withdraw the negative value judgement. It would be nice to get to a destination where differences between people didn’t matter, and support freely given at the point of need was built into the system.

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