Diagnosis Story 21: Rubbish at Pretending

Today’s story comes from Anna in Eastern Europe. She thought that everyone struggled with what she found difficult until a trip abroad provided evidence she couldn’t ignore.

 

“I did what any self-respecting adult would have done: went online and did a bunch of tests… I concluded that the tests were rigged and the Swedes were strange.”
Anna-Sparrow-0661.jpg
I usually think of people in animal terms, which makes it easier to recognize and remember them. I’ve always identified with sparrows. This one is from my time in Sweden.

Anna’s Story:

I was a miserable kid, constantly misunderstood, chastised, and even publicly humiliated by well-meaning adults. I was messy, because I had no idea how to be tidy; I was radically honest, but had the reputation of being a nit-picky, sly, lying child. It was always assumed that I was intentionally disobedient. When I was little, this seemed only natural, but as I grew older, I noticed, that others are not constantly in trouble. So I tried to imitate them. And I failed.

I became a furious, rebellious teenager, plagued by insane levels of anxiety. I spent years in therapy, where I was medicated, good-naturedly lectured, and relentlessly trained on how to be normal. More than anything I wanted to be invisible, to learn how to fly under the radar. I wanted to be the person whom no-one notices. I tried really hard, I did my very best, and failed again, spectacularly.

After school I got a job in retail. It went fine, except for the constant disagreements. Apparently I was challenging authority, disrespected the customers and was inconsiderate with my co-workers. But as I was fast, efficient and precise, I was tolerated, even promoted after a few years. Still, by the time I turned 25, I was fed up with it all: not just the job, which I promptly quit, but pretty much everything.

That’s when I had an epiphany, and then what I came to call my “anarchistic turn”. I was sick of pretending, and I was sick of being rubbish at pretending. I realised that it’s absolute nonsense to try to please people who wouldn’t like me the way I am. I decided that I didn’t want to be friends with people, who weren’t interested in being friends with me. I didn’t want to spend my life trying to perform to some kind of ideal of normalcy, just so that others could feel less uncomfortable in my presence. It had been a disservice to everyone how badly I pretended to be presentable. I absolutely needed to stop lying about who I was. It’s a better alternative if people underestimate me at first, and are later proved wrong than to have them disappointed in the real me.

Here I must point out that I had no idea, I was autistic at the time. I was taught in therapy that everyone is struggling with the stuff I found difficult: figuring out what people think, closed doors, phone calls, eye contact, social rules, you name it. I was convinced that everyone was just as confused by the world as I was, they just played along – so I could simply quit the game. Life felt a lot easier without an uncomfortable mask weighing me down.

But being unemployed and proudly weird wasn’t the best combination, and I failed to get a job. Ultimately I decided to enrol in university as a mature student, something quite uncommon in Eastern Europe. A year in, I got a scholarship to spend a semester as an exchange student in Sweden, and that’s where this story really begins.

At the end of orientation week I was pulled aside by our international coordinator, who asked in a very discreet but also very direct manner, if I was autistic. I was startled, and became even more so, when the same question started popping up here and there. Professors, student buddies, language tutors raised it again, and the issue became increasingly harder and harder to dismiss. So I did what any self-respecting adult would have done: went online and did a bunch of tests. I was surprised by the high scores I got, but the tests themselves were even more puzzling: they asked about what I considered to be perfectly regular human behaviour. I concluded that the tests were rigged and the swedes were strange, end of story.

I loved living abroad though. Every potential conflict could be explained away by me being a foreigner. I enjoyed it so much that upon graduation I applied for another scholarship, and went back to Sweden for a few months. Annoyingly enough the same thing happened, people asked me about being autistic left, right and centre. If this is so evident, how come, no-one had ever said anything at home? Am I only autistic when abroad?

I did some research. Coming home I asked around, and finally found an autism expert who was willing to explain things to me. I wasn’t actively seeking a diagnosis, I was mostly confused and wanted information. We exchanged a few emails and met two times. By the end of our second meeting she confirmed what I already suspected: I was showing “obvious signs” of Asperger’s, and should I seek an official diagnosis, I’d have her referral. It’s been over a year, and I’m still undecided: do I want to pay an obscene amount of money for a stigma that would effectively prevent me from ever getting a job? Probably not.

But the biggest surprise was yet to come. After this halfway diagnosis I expected to feel some relief, to finally find my place in life. Instead I was stricken and grieving. While every embarrassing memory and quirk suddenly made sense, I was also forced to accept that I’d never be able to acquire certain life skills. The revelation that most people are, after all, not as confused about everything as I was felt paralysing. The world became a much more threatening place with the confirmation that this secret language actually exists, and others are fluent in it. To add insult to injury, the friends I confided in and told about my autism weren’t the least surprised; they’d been suspecting it for a while, ever since I dropped the mask. They just thought it’d be impolite to mention it. Having others know something fundamental about yourself, of which you had no idea, can make you feel incredibly small. Know the feeling when you notice in the evening that your fly was open the whole day? Multiply that by years.

There is a bright side too, however. I wasn’t even aware before, how much contempt I had for myself whenever I failed at something which really wasn’t supposed to be that hard. While I’m not yet ready to forgive myself, there is much less self-hate going on these days. Now I mostly see my actions through an ironic lens and I’m decidedly unapologetic about my bumbling. My perfectionist side is readier to swallow its pride and admit when things are not working out or when I’m hopelessly lost. And maybe most importantly of all is that now I have a vocabulary to express who I am and how I see the world: words give unprecedented validity to my experience as a human being, they supply some reassurance that I am not faulty, I just belong to another category… and therefore I’m allowed to exist the way I am.

Advertisements

5 thoughts on “Diagnosis Story 21: Rubbish at Pretending

  1. I can relate. To sum up my own diagnosis story in a nutshell: I found out I’m autistic. My headache has been gone for a year and a half now.

    Liked by 1 person

  2. The revelation that most people are, after all, not as confused about everything as I was felt paralysing. … and the world felt more threatening… I agree with you and I still can’t get myself around this. I try to see good and I often fail or maybe the world has little to present. I do not know… So I retreat. Thank you for sharing your experience.

    Like

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