Diagnosis Story 12: Escaping the Cocoon

Today’s story is another anonymous contribution. The reason is again for fear of damage to professional reputation in a world that is still not ready to accept the strengths of autism.

It seemed that even in this day and age, disclosure so early on in my career might have unfortunate repercussions and I was advised to consider the impact this may have on my career … the irony for me was that the one thing that helped me perform above others in my field was the same thing I had been gently advised to keep hidden away.

mask-2934152_1920
the more adept I became at camouflaging, the more I suffered with social hangovers

My Almost Diagnosis Story:

I call it my ‘Almost Diagnosis’ because it never actually happened. Not fully anyway. A lot of autistics have an autism diagnosis. I have an Almost Diagnosis.

Many Aspies share a similar story. More often than not it starts with, “I always knew I was different, but for a long time I didn’t know why…”. This was certainly my experience too, until I was about 17.

While studying at uni I remember becoming extremely frustrated with the tutor one day. We were studying ‘Abnormal Psychology’ and I couldn’t understand why the things they were talking about in this particular session called ‘Autism’ were classed as abnormal. None of it was abnormal, it all made complete sense, it was simply everyday life that everyone experienced, right? This was everyone’s perception of the world, wasn’t it? And why was everyone hurriedly scribbling notes as if this was all new and very interesting information?! I was so annoyed that I stood up and walked out of that tutorial (on tip-toe of course, flicking my fingers as I do when particularly excited or annoyed), thinking everyone there must have spent too much time at the uni pub that morning. That was my first introduction to Autism, and what an introduction it was. One of the interesting things about life is if you’ve never known a different reality, that is your reality. That is ‘normal’. And I wasn’t about to let anyone tell me otherwise.

I realised from a young age that my ‘superpower’ was learning – if something could be learned I’d make it my mission to learn it. As a child I felt like I was a butterfly trapped in a cocoon, and thought that if I just learned everything that I possibly could, that it would somehow help me magically transform from this person who was trapped in this place of confusion, and become ‘just like everyone else’. This desire for knowledge led me through random hobbies and university qualifications but the most beneficial thing I had learned to date was how to imitate and camouflage. I understood the world and those around me through observing and imitating behaviour, but the downside of this was that the more adept I became at camouflaging, the more I suffered with social hangovers. I sought secret islands of tranquillity and solitude as refuge on a daily basis, and took pride in knowing that for 7 hours each day I’d been the chameleon that was expected and survived the day. I was also exhausted. The kind of exhaustion that comes from years squirreling away social rules in the filing cabinet of my mind, working off socially appropriate scripts that I had developed through years of saying the ‘wrong thing at the wrong time’, watching friendships fail for reasons that completely eluded me, and from finely tuning my perception of social models through difficult lesson after difficult lesson. All in hope that with time and learning I’d be able to break out of that cocoon that I took shelter in due to a secret fear that the person I was was unlovable, and one day I’d magically be just like everyone else.

But that was not meant to be. Just for fun, my autism had also brought along its 2 annoying cousins – Selective Mutism and Alexithymia. Eventually after decades of struggling to talk in group situations, not understanding my own or other’s thoughts or feelings, spending night after night staring at the ceiling due to absurd sleep patterns and just generally not understanding society at all, I decided it was time to do something about it and explore the path of Autism Diagnosis.

I am not faulty.
I am not ‘damaged goods’.
I’m actually just fine, exactly as I am.
And hearing this was part of what finally allowed me to grieve for the little girl who spent so many years of her life in hiding, trapped in that butterfly’s cocoon, trying to find a way out.

My strongest memory of the psych appointments is the psychologist’s coloured glass paperweight that sat in her office – the type that looks like an overgrown marble with something that looks like the love-child of a half chewed lolly and a slightly odd looking butterfly trapped inside. It was unique, it was different, and I liked it. After an hour into what was probably a fairly disjointed conversation while I stared over her shoulder at the paperweight, she reached behind her, picked up the paperweight, placed it in my hands, and put her note book away. I found out later that by that time she was pretty sure she already knew what had taken me years to work out.

My next appointments however, were different, and I was not prepared for the discussions that took place. Due to my field of work it seemed there may be valid reasons at that point to consider not pursuing an official diagnosis. The reasoning behind this probably isn’t important, but suffice to say it seemed that even in this day and age, disclosure so early on in my career might have unfortunate repercussions and I was advised to consider the impact this may have on my career. I sought a second opinion as to whether I might be on the spectrum and ultimately was faced with the same decision. The message was clear, “Be yourself, be proud of who you are. But be aware that unfortunately society still has a way to go.”

I saw the first psychologist one more time after that. Standing in her office I said, “So, am I autistic?” She smiled, and said in her diplomatic but precise way that I’d come to enjoy, “In my professional opinion there is very strong evidence to suggest that you are autistic.” She then handed me the paperweight and I left.

So the obvious question here is, “Why seek a diagnosis at all if in the end you chose not to follow through?” It took me a while to answer this myself. What I learned first and foremost from my Almost Diagnosis was that it wasn’t the giant ‘A’ tick at the end of it that I wanted or needed. It was just to hear ‘the words’. The words, “You are not broken.”

I am not faulty.

I am not ‘damaged goods’.

I’m actually just fine, exactly as I am.

And hearing this was part of what finally allowed me to grieve for the little girl who spent so many years of her life in hiding, trapped in that butterfly’s cocoon, trying to find a way out.

So that’s my ‘almost diagnosis’ story. I’ve never really been able to reconcile that somehow a formal autism diagnosis – the very thing that is a benefit to so many – could be detrimental to my career, as the irony for me was that the one thing that helped me perform above others in my field was the same thing I had been gently advised to keep hidden away. But I realise that in some fields that’s unfortunately the way it still is for the time being, and for now it’s enough to know that there are many strong, passionate people working to educate the wider community about the strengths of autism and the gift that autism is for so many. One day, hopefully soon, we won’t need to second guess how disclosure might impact our career.

Until then I continue to wear my autism badge with honour, and the chameleon act has long been dropped. I’m now just seen as myself – quirky, a little odd, and occasionally I can be known to discuss gravitational waves until my audience falls asleep. But I’m also accepted, understood, and loved for the person my autism has helped shape me into. I’m autistic and I wouldn’t change that for the world as it is such an integral part of who I am that I wouldn’t be me without it.

And the paperweight with the odd butterfly? Well that still sits on my kitchen window to this day. I see that funny, unusual little butterfly every day when I make my morning coffee, but now instead of seeing something trapped, I see the sparkles that glisten on its tiny wings. I see the beautiful colours that dance around my kitchen when the sun hits it for a few minutes each morning. And it’s a constant reminder that difference brings a rare, unique kind of beauty to the world.

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s