The person underneath the diagnosis
Getting sober and finding out I was autistic saved my life.
That is not a metaphor, and it isn’t something I say lightly. For more than a decade, I had been in and out of psychiatric hospitals, heavily medicated and in constant therapy. I had been given many diagnoses – bipolar disorder, borderline personality disorder and others – which were supposed to explain why I experienced the world the way I did. Instead, they became my whole identity, a truly pathological way of understanding myself.
I had always struggled with belonging.
Belonging felt like having a door held open for me, only for the wind to slam it shut just as I reached it, while the others stood inside wondering why I never made it through.
Autism gave me something I had been searching for without knowing exactly what it was: an explanation that did not require me to view myself as fundamentally broken. For the first time, I could look back on my childhood, social difficulties, sensitivities and that unescapable feeling of being outside of the box looking in and understand them differently.
There was huge relief in that.
I wasn’t failing at being a person. I was a person whose way of experiencing the world was different from the norm and I had spent my entire life trying, unsuccessfully, to mould myself to that world.
The diagnosis allowed me to understand myself. More importantly, it allowed me to accept myself.
It also gave me something much more tangible. The diagnosis is necessary in my life as it allows me to access things I genuinely need from education and from the state. It gives me a framework to advocate for myself and my needs without having to endlessly prove that my difficulties are real.
A diagnosis in that sense can be liberating.
Yet, several years later, I found myself confronting an uncomfortable irony: Autism, which initially helped me escape the shackles of pathology, threatened to become just a prettier set of cuffs.
Not because the diagnosis is wrong, not because autism isn’t real. And certainly not because I want to return to a time when people like me were simply expected to struggle silently.
The problem is when the explanatory framework begins to explain too much.
When every sensitivity becomes an autistic trait, every social difficulty, niche interest, preference or reaction becomes autism, I start to wonder where the person has gone.
I needed to meet the person underneath the diagnosis.
Autistic traits are human traits. I am human. I am not “typical” and that difference has caused me genuine difficulty throughout my life. But I am becoming increasingly uncomfortable with the idea that the things that make me different belong only to the world of pathology.
We have an incredible tendency as a society to pathologise the human experience and then paradoxically, to romanticise the very things we’ve pathologised.
Online, Autism and ADHD have become aesthetic descriptors. I have honestly seen dating app prompts listing “slightly autistic women” as someone’s type. It is bizarre. Something that for many people can involve genuine disability, distress and extreme difficulty has become a kind of aesthetic.
We have somehow arrived at a point where neurodivergence can be both a medical diagnosis and a personality accessory.
I find that contradiction fascinating, but I don’t want it to go in the opposite direction either.
I don’t want autism to become so normalised that we stop recognising disability. I don’t want people with significant support needs to have their difficulties minimised in the name of celebrating difference. And I don’t want the answer to our discomfort with pathology to be pretending disability isn’t real.
The difficulty, perhaps, is that we have become too familiar with thinking about autism as though it exists on one simple range of severity.
But a diagnostic label does not tell us everything about a person.
An autistic person may have a high IQ and fluent language. Another may have an intellectual disability or profound communication impairment. Another may have autism alongside, epilepsy, a genetic condition or another developmental difference. Someone else may have none of those things.
These are radically different human experiences, even though the same diagnostic word may appear on the page.
This matters because we have a tendency to let the word autism carry far more explanatory weight than it can actually bear.
At one end of the spectrum, an autistic person who communicates fluently and lives independently may have their difficulties dismissed because they don’t resemble the public image of autism. At the other, someone with profound disabilities may have their entire developmental picture reduced to autism, when other conditions may be an essential part of understanding their needs.
Neither person is served particularly well by the label.
Perhaps this is why I have become so interested in the rise in autism diagnoses.
I don’t think there is a simple answer to what the increase means. Some people who are being diagnosed today were almost certainly there all along, simply without the language, awareness or diagnostic pathways that might have identified them earlier. Our understanding of autism has changed. The people we recognise as autistic have changed. The category itself has changed.
But I also think we should be allowed to ask uncomfortable questions about what happens when a diagnostic framework expands and starts being used to explain a wide range of human behaviour.
That question shouldn’t automatically be interpreted as an attack on autistic people.
I am asking it as an autistic person.
My own diagnosis was one of the most liberating things that ever happened to me. It helped me understand why I had spent so much of my life feeling different. It helped me to let go of diagnoses that had come to define me. It gave me access to support. It gave me language.
I don’t want to lose any of that.
But I also don’t want to become my diagnosis.
We are all born different. Some differences are disabling in the world we live in. Some require accommodation. Some require medical intervention. Some simply require other people to stop treating them as wrong.
It is wonderful that we are becoming better at acknowledging that different kinds of people exist.
But there is a danger in believing recognition requires pathology.
Because once we divide humanity into the “typical” and the “atypical”, we make the typical the standard against which everyone else is measured. In doing so, we keep the “typical” feeling superior and the not-so-typical feeling “sick”.
So while an autism diagnosis helped me understand why I had never quite managed to walk through that door, I don’t want to spend the rest of my life standing outside it, staring at a label and trying to work out what kind of person it says I am.
I want to meet the person who was there all along.