…and how the correct diagnosis is like turning the lights on.
It took 25 years, 5 psychiatrists, 4 diagnoses and a string of shortsighted doctors before someone finally realised the issue was autism.
And that someone was Me.
I’d already felt ‘apart’ for as long as I could remember, but I fell apart when the usual teenage struggles really started to impact my wellbeing and I lacked the vocabulary to communicate what I was experiencing. The harder I tried to describe my difficulties – social anxiety, non-existent self-esteem, a feeling of alienation that came from within more than without, for only I knew the extent of the pretence I kept up to be the person everyone thought I was – the more it sounded like I was making excuses, and the more ashamed I became. Teens have a reputation for melodrama anyway, and eventually I just figured it was like that for everyone. Confronted by an unexpectedly hostile world I experienced a climactic rush of bafflement and betrayal that inevitably spilled over into a more private realm of second-guessing, self-doubt and paranoia. I stopped communicating my reality to all but my diary. Nobody knew how I felt on the inside they just saw who I pretended to be.
We shape ourselves to fit the world, and by the world are shaped again.
Decades later when I was finally diagnosed with autism at 37 it was a huge relief. I can’t convey the enormity of what it meant to me. Slowly, I began to unpick the stitches of a lifetime of shame with the dawning realisation that what I was taught to see as negative character traits were manifestations of a far bigger tapestry. My unfinished degree, dread of everyday interaction with people, and constant fight against depression weren’t signs of laziness and mental weakness; they were the cumulative effect of stressors gone unrecognised. Eventually that everyday interaction carried the weight of a lifetime of failure, failure to pull myself together, to make something of myself, to apply myself, have confidence in myself… the list was exhaustive (and exhausting).
But although diagnosis had a profound effect on my outlook, as time went by the euphoria of finding an explanation for my struggles waned and doubt began to creep in.
In the course of helping my daughter, whose early diagnosis at 3 years old had been the catalyst for my own, I found that much of what’s popularly known of autism didn’t apply to me. I can maintain eye-contact (although I find it uncomfortable), I’m not intellectually disabled – I can socialise, crack jokes and follow social/cultural expectations. When I tell people I’m on the autism spectrum they raise their eyebrows in surprise.
I don’t look autistic, and you don’t look ignorant. But here we are.
So I began to wonder: maybe I wasn’t autistic. Maybe I’d managed to convince myself, not to mention the medical professionals, in my desperation to find a reason for my lifelong sense of ‘different-ness’. Was I just looking for a scapegoat to pin my shortcomings on?
It doesn’t help of course that there are so few resources for adults on the spectrum. It’s as if society shrugs it’s shoulders and says ‘Well, you’ve made it this far…’ When you receive a diagnosis and exactly nothing changes it’s easy to wonder if you just imagined it all.
Research is continually pushing the parameters of how we recognise autism. New aspects are coming to light all the time, the most profoundly significant of which must be the vastly different ways it manifests in males and females, and it’s these subtleties of the autistic existence that ring true for me and remind me why diagnosis seemed like a key to unlocking my understanding of myself in the first place.
From the outside, everything had to look fine, and I learned how to do that really well.
From the time I started school and felt myself to be different I’d chosen the path that promised inclusion if I played the part expected of me. Because my family had emigrated and moved house frequently I came to view my ‘acting’ in terms of natural adaptation to new situations – when in Rome…
But ultimately I pretended to be someone else for so long, and so well, that I forgot it was an act. I had taken the Blue Pill and necked it with Kool Aid.
With my diagnosis I chose the proverbial Red Pill. I made a decision to accept the truth of my reality, to begin working to see my thought processes for what they were instead of ignoring them in favour of groupthink. I came to realise all the work I put into ‘blending in’ was perhaps the greatest source of my despair and frustration. I began the task of claiming my authentic self, accepting my differences, and learning how to play to my strengths. It hasn’t been easy. It’s frequently upsetting, draining and frustrating. But, in spite of all that, I’m discovering it’s worth it for the sense of solidity I’m beginning to feel with each victory. Each small act of courage in the face of fear, each risk of bald honesty in the pursuit of trust and authenticity, the strength these deliver keeps me going. Like pulling on new gloves, I’m stretching and flexing in the delicious novelty of my liminal assertiveness, the ease of release from perfection, the potentiality of all that I still could be.