Self-diagnosis can be a prickly subject, even among neurodivergent communities, raising difficult questions about how we collectively identify and define our differences. But why does it so often elicit such an emotive response from people on all sides of the debate?

As waiting times for ADHD assessments in the UK continue to become ever longer, more and more people are choosing to diagnose themselves, rather than wait several years for a healthcare professional to confirm something they are certain they already know.

This has led to a seemingly endless deluge of opinion pieces and media commentary about how ADHD is no more than a fad, and that anyone who forgets their keys occasionally now thinks that they are disabled.

I have a clinical diagnosis of ADHD, so I have skin in this game. While I am fully supportive of self-diagnosis, on a personal level I don’t tend to think of ADHD itself as being a thing that I ‘have’, nor is it a thing that I ‘am’. Attention Deficit Hyperactivity Disorder, or ADHD, is a diagnostic construct: a clinically-defined category of traits and behaviours into which people – or patients – are sorted by healthcare professionals.

Like all other diagnostic constructs, ADHD serves a valuable purpose within the medical establishment – it allows clinical professionals to assign people (patients) to a specific treatment category. Under the medical model, the primary focus of any intervention is corrective – so there needs to be a defined thing to correct, as well as defined parameters for what counts, or is reasonably acceptable, as ‘healthy’.

No broken brains

When a patient presents with a broken leg, it’s fairly simple for a doctor to assign them to the diagnostic category of ‘fracture’ and to treat them accordingly. But this approach can only work if there is widespread agreement on the definitions between each diagnostic category, which is generally harder to establish when it comes to psychiatric medicine.

What happens when a patient presents with a cluster of psychological and emotional signs and symptoms that are less tangible; with a form of distress that is harder to pin down? Psychiatry is not an exact science, and the boundaries between diagnostic categories are often blurred.

The only way to maintain the definitions that are so central to the medical model is to employ gatekeepers – in this case, professionals who can form a consensus about what is (and isn’t) included within each diagnostic category, and who have exclusive power to assign people (patients) to each one. Otherwise, the whole thing breaks down.

Power to the people

When you look at the function of diagnosis within the medical system, it’s no wonder that many people react so passionately against the idea of self-diagnosis. Under the medical model, diagnosis is, necessarily, something that is done to you – not something that you can do.

But of course, for most neurodivergent people, what we call ‘diagnosis’ is actually a form of empowerment – a re-conceptualisation of identity; a reclamation of agency; a re-integration of oneself within a community.

In self-diagnosing, we are upsetting the skewed power dynamic that is central to the medical model. And because our entire society is based on power dynamics, this makes a lot of people feel very uncomfortable.

As a result, we hear the same complaints made time and time again:

“You can’t diagnose yourself with something – that’s ridiculous!”
“Oh, everyone thinks they’ve got ADHD or autism these days.”
“If you haven’t got a diagnosis, you’re clearly not struggling that much.”

Ouch. When people say these things, it hurts – because what we are really hearing is that we have no authority to understand ourselves; no capacity for agency; no value as members of our own community.

Because diagnosis serves a very different function depending on who is doing the diagnosing. If you look at self-diagnosis through a social lens, rather than through a medical one, it can be a hugely positive thing.

Divergent minds

But is it actually possible for us to reclaim something that we never really owned in the first place? The diagnostic category of ADHD was constructed on the basis of disease; disorder; deficit. It was – and still is – used primarily as a tool with which to judge and demand complicity from those least able to conform to neuronormative expectations.

Of course, many concepts and terms that were once used to control and alienate people from minoritised groups and communities have subsequently been successfully reclaimed, and a lot people are keen to now do the same with ADHD and other diagnostic categories.

Personally, these days I prefer to identify simply as ‘neurodivergent’. As a term that originated within – and for – the neurodiversity advocacy movement (it was coined by multiply neurodivergent activist Kassiane Asasumasu), this word has always been intended to be an inclusive and liberatory description for anyone who perceives, interprets, and/or interacts with the world in a way that is different from what is expected or demanded within the dominant economic and cultural conditions.

So I’d like to say that I don’t care when I hear people dismissing ADHD as a fad, or as being entirely made-up, or as a way for lazy people to avoid taking responsibility for themselves. But I do care. It still hurts.

Because for so many people, the concept of neurodiversity as a social and political movement is still completely alien. When these people hear someone vocally dismissing and disparaging the idea of self-diagnosis, they begin to question the only explanation they’ve ever found that helps them make sense of their own internal reality.

We are all so accustomed to viewing our world through the lens of the medical model, it’s hard to even realise we’re doing it. But it’s useful to remember that just because we’re used to seeing complex issues in a certain way, that doesn’t make it the objectively correct, or only, way to look at them. It can be hard for any of us to look beyond what we are taught to see, but there is always more than one way to view the world.

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Find out more about how we are connecting and supporting people who are just beginning to explore their own neurodivergence, whether or not they have (or want) a clinical diagnosis, through the ZIG/ZAG Peer Mentoring Scheme.