'What difference would a diagnosis make?'

Um, let me count the ways...

Let me say at the outset that I am far from an expert on this subject but felt compelled to write this. I hope it helps. Thank you for being a subscriber, paid or even unpaid; sometimes I feel like I’m hanging on by a thread and when I think about what makes up that all important thread, this community, this Substack, is a huge part of it.

When it comes to neurodiversity, there’s a fairly common opinion that diagnoses — or “labels” — are unnecessary. I hear it all the time: that a diagnosis doesn’t change the child in front of you (or you, if you’re seeking an assessment for yourself). And yes, technically that’s true — it doesn’t change their wiring, their traits, their eye colour, whatever. But it does change their experience. And yours, if you’re the parent. It changes how you respond to them, how you support them. It gives you a framework, a context, a light to move through what can feel like total darkness. Without it, you’re bumping into brick walls at full pelt and blaming yourself for not developing 20/20 night vision.

Sometimes the resistance to diagnosis comes from the belief that neurodivergent profiles are being “overdiagnosed” these days. I don’t agree with that, but my opinion aside, the research is clear: autism, for example, isn’t becoming more common — we’re just becoming more aware of it. We have better diagnostic tools, better language, and more people willing to advocate for themselves or their children. Parents are refusing to be told their child is just “difficult” or “odd.” Neurodiversity has always been there, just like mental health struggles have always been there. What’s changed is our awareness — and that can make it look like these things are suddenly everywhere.

Another reason some people hesitate to seek a diagnosis might be a lack of acceptance — of their child’s experience, or their own. That’s understandable. Denial can feel safer than uncertainty. But ultimately, it keeps everyone stuck. Acceptance, or even just curiosity, takes time. And courage. But it moves things forward.

Lastly — and this is the part that’s hard to say gently — when someone DMs me to ask “What’s the point of a diagnosis?” (usually after insisting they don’t mean any harm), I can only assume that person either isn’t a parent, or isn’t parenting a potentially neurodiverse child. Because to the parents who are — the ones who’ve been in the dark and finally get some light, who finally understand why everything has felt so hard, who now have direction, validation, support — the idea that a diagnosis doesn’t matter is mind-boggling.