Diagnosis – love it or hate it, a formal diagnosis by a medical professional is seen as hugely important in our society. The positives of this, more generally, are numerous: we can all get the treatment we need when we are ill. It would be fair to say that when we’re talking about mental or physical illness, diagnosis is key to getting help.

But I want to talk about our diagnoses as neurodivergent people, particularly as late-diagnosed. This is a much more fuzzy area, and the first problem that we encounter is that there is so much disagreement/variation in what diagnosing professionals decide defines our neurodivergencies, despite their use of diagnostic manuals that are supposed to prevent confusion and misdiagnosis.

From there you go to the charity and awareness-raising sites, all doing their bit but with a vast array of language and definitions – particularly between UK and American organisations. So many of these, as well as hospitals, universities, you name it, write about co-occurring conditions as if they are integral aspects of being autistic. For the many autistic people who don’t then recognise these aspects in themselves, who may not want, or can’t wait for, a formal diagnosis, they are in danger of walking away, believing they must be mistaken about who they feel they are.

So, if the professionals, the charities, large organisations of every kind and published authors can’t even agree on the basics – where does that leave us, as adults trying to find our true identity?

If we are in need of State financial support, that formal diagnosis is the only way we stand a chance of qualifying for it (and that’s another minefield for another time). If we need our employers to make ‘reasonable adjustments’ in the workplace, that official diagnosis is also likely to be required.

Even if we are not looking for a diagnosis for any practical reason, for many of us it still feels that unless a (typically neurotypical) medical professional gives us that stamp of authenticity, we don’t have the right to identify as autistic, ADHD, dyslexic

And yet, of the many neurodivergent adults that I have engaged with this year, the majority of us are able to read one good book, one well-written article, by one neurodivergent individual, before joyful little lightbulbs started lighting up as we began to feel relief, and maybe even excitement, that we are right there with those writers, on that page. Some, like me, have spent time with other neurodivergent people and found uncanny resemblances to ourselves. We just KNOW. We start to feel understood after potentially decades of flailing around looking for answers. We just know.

There will be some of you that have found a way to live your lives authentically, on your own terms, and your need for any label at all is superfluous (but then I don’t suppose you’ll be reading this anyway!). There will be those of you who are upset with the prospect of an official label – as if you, as a unique individual, should be neatly put into a box. I get that, I really do.

I’m writing this, I suppose then, for those who worry that we’re ‘not allowed’ to identify as neurodivergent without that official stamp. I want to encourage all of you that are on a seemingly endless waiting list to consider if and why you actually need one. If it is because you don’t trust your self-diagnosis, even though it feels more right the more you investigate further, I totally identify with that. It’s exactly why I felt I needed a formal autism diagnosis – and I have no regrets at all. It immediately took away that terrible feeling of imposter syndrome, for a start! Having said that, I have already self-diagnosed my ADHD, even though I am now also being assessed by an NHS psychiatrist – who is AMAZING – kind, non-judgemental and who actually listens. I trust my judgement on that one.

If you don’t feel you have the time to wait potentially years via the NHS, and can’t afford/don’t trust/disagree with the use of a private diagnosis, trust yourself – your self-diagnosis is valid. Keep reading, join communities like ours (at the bottom of the page), and you’ll know very quickly if you’re at home.

Formal diagnosis has its place, but there’s a very good reason why there’s suddenly such an outpouring of books written by neurodivergents for neurodivergents – it’s because no one knows us like we do!