This is something I didn’t expect to be writing, but it’s important.
I was diagnosed Autistic at the age of 41 in 2021. Like many people who are late diagnosed, I’ve spent decades in and out of the mental health system trying to understand myself, being misunderstood, and not being heard properly. Getting that diagnosis brought clarity. It gave context to a life that had never made sense through the lens which it had been viewed before.
But what has recently happened has knocked that foundation again.
A few months ago, I received a call from my GP practice saying I was due for a “learning disability review.” What??? I have never been diagnosed with a learning disability. There is no history of it in my records. No assessment – Nothing. We challenged it straight away, asked for clarification, and put it in writing. No response.
Then this week, I received a discharge letter from a service I’ve been under, and in black and white, it states that I have a Learning Disability.
This isn’t just a one-off mistake. This is on my record. It’s being carried across systems, and it’s being accepted and repeated without question.
And that raises a much bigger issue – why is this happening?
Because somewhere along the line, autism is still being misunderstood and, in some cases, wrongly categorised. There is clearly still a lack of clarity in parts of the system where autism is being collapsed into learning disability, when they are ‘not’ the same thing. They can co-occur, but one does not automatically mean the other. That’s basic clinical understanding!
For someone like me, late diagnosed, no prior history, no cognitive assessment indicating a learning disability, this should not be happening – there is no justification for it. And yet it’s there, listed on my medical records, shaping how I am seen before I even walk into a room.
This is where the real impact comes in –
When you are labelled incorrectly in the system, it affects how professionals approach you. It affects how your communication is interpreted. It changes the starting point of every interaction, and not in a way that reflects who you actually are.
For me, this has done more than trigger me – It’s set me back.
After years of fighting and navigating systems that don’t understand me, years of trying to be heard, years of being spoken about instead of spoken to, this has brought that feeling straight back and a huge reminder of why I don’t trust the system. It’s rebuilt a barrier I’ve been working hard to break down.
And what’s made it worse is the silence despite multiple emails.
We’ve challenged it and asked for answers. We’ve put it in writing, and nothing has come back! That lack of communication doesn’t just delay a correction – it reinforces the problem. It sends a message that accuracy around autism, especially in adults, is still not being taken seriously enough.
So my bigger question is – Is this happening to others?
If you’ve had a late autism diagnosis, have you ever checked your records properly? Not just what you’ve been told, but what is actually coded and written in your file? Because I didn’t expect this to be there, and if I hadn’t been told about that review call, I might never have known.
This is why there needs to be more training. Not just surface-level awareness, but proper, clinical understanding of autism, especially in adults who have spent years being misread. Late diagnosis comes with complexity. It comes with history and layers that need to be understood, not simplified or incorrectly categorised – just to fit the system.
Autism is not a learning disability, and it shouldn’t be treated as one by default. And when mistakes like this happen, they need to be acknowledged and corrected quickly, not ignored.
If the NHS is still confusing autism with learning disability at record level, then the conversation around understanding autism isn’t progressing – it’s reinforcing the stigma at its source.
If you’ve been through a late diagnosis, please check your records – not because you should have to, but because you might need to.
article via loveartpix.co.uk
