What It’s Like Living With Undiagnosed Autism
Some people are frightened when they think the words: I might be autistic or, even, I am autistic.
For me, at 22, it felt like a revelation. A hidden secret that had been waiting to be revealed.
Let’s rewind a little.
Thirteen year old me, nerdy and shy, at a doctor’s office being interrogated. Or, at least, that’s how it felt.
Imagine the scene:
Doctor: How does noise make you feel?
Me: [Insert passioned diatribe about how awful hand-dryers are here]
The doctor had continued, unimpressed. She asked me how I felt about bright lights and that’s when my suspicions turned to definite knowledge.
Even then, I knew exactly what those kind of questions asked by a medical professional would symbolise. And I told her so.
Me: You’re testing to see if I’m autistic, aren’t you?
Doctor: If you know what these questions are for, then you couldn’t possibly be autistic.
In her eyes, my difficulties didn’t matter because I had the ability to use logic and realise why she was asking those questions.
A pretty simple thing and it had lasting consequences for my life over the next few years.
School is a bit of a blur, of discomfort and textbooks, but I’m sure knowing that I wasn’t “weird” would have helped me out a great deal.
University was when I started to feel more at home in my skin. Surrounded by old books, exploring archives, I began to understand myself better. I was right where I wanted to be.
Here’s the thing. Autism is everywhere.
If you’re autistic, it doesn’t just go away because you’re happy. It’s a part of you.
During my undergrad I pushed myself to integrate, to join all of the fun societies I wanted to and take up work experience opportunities. To make myself the most rounded person I could be at the end of my degree. By third year, I was having on-off bouts of the most severe fatigue I had ever experienced.
It was at its worst in second year, while living in a shared house for the first time, but flared up dramatically in final year when I tried to combine job hunting with finals.
I didn’t notice the pattern then. The correlation between times when I had been very social and busy, and when my energy levels had crashed down around my feet.
It was only a few weeks ago, when I splashed out for some private medical tests, that I realised there was no outright physical cause for the timing of these episodes (apart from my Ehlers-Danlos).
Being too social, too busy, too desperate to fit in had made me sick and I hadn’t even noticed.
After undergrad I went back to college. This time I was there to study Creative Writing. I love words, they’re kind of my thing, so a year dedicated to writing seemed perfect.
I lasted two and a half weeks on my course before I caved and transferred to a history based Masters.
Why? I can give and take criticism online, via the written word, perfectly fine.
However, the writing classes were in person. With in person workshopping. Processing auditory information is often difficult for me, especially when I’m tired.
The writing course was from 5pm to 7pm. Combined with a long commute, in the dark winter months, this meant I was already not-at-my-best by the time I arrived in class.
Couple that with trying to articulate my thoughts on classmates’ work verbally and things were already looking difficult.
I’m a messy writer and spend weeks cleaning up my drafts. Classes, during the time I was there, centred around work created within the workshops. Meaning I was having to face my dislike of public speaking and my difficulties in following conversations involving many people.
Hiding from class by strolling through a careers fair pretending I was interested in an accountancy career was the final straw.
I realised that if the course was making me so unhappy that I would rather contemplate becoming an accountant — a career similar to one I’d briefly considered and then discarded as not for me years before — something was deeply wrong.
Having made the switch, things went along smoothly until a change to the way our mandatory foreign language course was taught in the History department made everything turn upside down once again.
My anxiety rocketed upwards. I was once again stuck in classes that were based predominantly on appealing to aural learning styles, but this time there was no easy out.
I might talk more about that experience and what it taught me another time, but for now suffice to say…
I was beginning to sense a pattern.
Soon after college I shelled out the couple of hundred bucks to see a specialist, who pretty promptly announced that I did have autism. Asperger’s Syndrome, as it was called then.
Since my diagnosis I have given myself permission to be honest with myself.
When I took up a job which I quickly found was nothing like I thought it was going to be and involved so much ‘peopling’ that I was completely exhausted every single day, I made sure to make my escape as soon as possible.
Not because I’m a quitter, but because I know my limits.
Because I now know I’m autistic, I’m in a position to make the decisions that are right for me. Without self-hatred, or a sense that I’ve failed by moving on to something new.
For me, the hardest thing about living with undiagnosed autism was living my life without truly understanding myself. My quirks, my difficulties, who I am and what I love to do: I understand myself far better now.
Living with undiagnosed autism is like if you’ve bought a Mercedes and it comes with a BMW manual. Nothing wrong with a BMV — but if you have a Mercedes a manual for that car is pointless.
With that (awful) weird metaphor, I’ll call it quits on this article.
I wish thirteen year old me had known that it is ok to turn your back on things that hurt you, to preserve your wellbeing above all else.
More than anything though, I wish the girl who sat in that doctor’s office pouring out her heart and was rewarded with stoney silence knew one thing.
Everything would turn out just fine.
