The following is an excerpt from the true life story Disappearing Girl, by Katherine Uher (Available on Amazon)
As a young girl with Asperger’s Syndrome my anxiety was obvious to everyone. Although they didn’t understand it. They thought it was shyness or low self esteem. People would tell me to calm down and just be myself, but if I dared to, they’d tell me I was doing it wrong. I wasn't really supposed to be lost or confused or even authentic. I was meant only to slot neatly into the hole society had allotted for me, and that was it.
No one told me that fireworks weren't loud or that I wasn't scared. No one directly said, I wasn't getting lost or having trouble with my locker. It was simply that, like with many other things, I was expected to cope better than I did. It had always been that way. Everyone else acted so convinced that I wasn't trying hard enough, that I too became convinced. I felt shame for my “lack of effort”.
In high school I started wearing make-up and took up Catholicism and tennis. What I lacked in natural grace I made up for with obsession. I turned my bedroom into a floor-to-ceiling collage of pictures from fashion magazines I felt I could emulate in some way. I used these pictures in the same way I used the people around me, I looked to them to tell me who I was, or was trying to be. Putting pictures on a wall might seem typically girlie, but my expression of this ritual was extreme. As I surrounded myself with fashion models my body image plummeted, and so did my weight. I started checking my weight fifteen to thirty times a day.
All my endeavours were born from the same desire: to fit in, for my ugliness, my childhood abuse, my promiscuity, the publicly shaming bullying I had endured to all be washed away...
like some unfortunate stage in my childhood, like braces or acne which were completely gone and could no longer be seen by others. Every second of every day was about making myself clean.
The only time I could truly relax was when I was alone. My bedroom was my place for sensory repair work, my private retreat, my ongoing art project, and my place for self-expression. But unfortunately what was a calming haven of solitude for me was a wonderment to others. One day my sister took a friend of hers into my room.
They were marvelling at my work when I walked in on them. Had this happened today I might have felt proud and safe knowing they couldn't really see the pain and loneliness behind it. I might have felt free to let them stand there and look, understanding that what I had created was extraordinary. But that day I felt invaded. They touched nothing, they were only looking, but it was as if they were reading my diary; the words these pictures spoke were of my lostness and my desperation to find my place in the world.
I started screaming and ripping my collage off the walls. I smashed my lipsticks onto the walls. I grabbed the clumps of rouge and smeared the colour over my face and head. My father came home, hours later to find me, skin and hair covered in red, trembling, amid the wilderness of my shredded collage.
The next week I started seeing an adolescent psychologist. I told him that recently I had been trying to conform but despite my efforts I would still feel overly upset about things; that a rage would come on so quick I didn't even know it was coming. The doctor told me I was amazingly articulate and insightful for my age, and that I was exhibiting clear signs of being bi-polar.
I went back to my mother's psychology book to read up on my new diagnosis. I was hoping desperately to understand what was wrong with me, but psychological disorders were a little like horoscopes: most of them could apply to most people at least some of the time. Asperger's especially, because it's about an intensity of perception and reaction, tends to mimic many psychiatric disorders, so unfortunately we do tend to get misdiagnosed quite easily. The real annoyance here isn't that the most appropriate label is missed, it's that our life experience is missed. The reasonableness of our response to the sensory overload is missed.
This time, after my misdiagnosis of bi-polar disorder, I was put on lithium for the next four years.
