First things first, I suppose a little introduction is in order. They usually make me uncomfortable but since we don’t have to guess who is going to go first this should be a little easier. Besides, there is nothing in this world I know more about than myself, the hard part will be keeping this short and sweet. I am 30 years old, and I just discovered a few weeks ago that I have Asperger's Syndrome. In the grand scheme of things this doesn’t change anything, I’m still exactly the same person I was before I figured out why I am so different, and yet at the microscopic level at which I examine myself it’s monumental. This has given me something I have searched my whole life for, perspective. I have found my voice. I hope to help others find theirs. Welcome to my world.

Thursday, November 22, 2007

Hiding Within

I haven’t always been reclusive. I went to regular school like any other kid and went on to college. I took my kid to school and went to my full time job every day. I went out every night and had lots of friends. To the outside world I seemed like your average young mother doing her best to get by in life, but I was screaming on the inside. It’s hard to cope with feeling this way when you have no idea what’s going on, or why you are struggling so much with things everyone else can do with ease. I understand now that its common with Asperger’s to feel this way, but back then I slowly withdrew a piece at a time trying to gain some peace and clarity in my life, and some understanding of why it all seemed so different for me.

The times I want to leave my cozy little den have dropped dramatically in the last few years. I don’t think the time I spend alone is a new need, just the further recognition of one I’ve always had. I can’t focus on anything when there are other people around, so I stay in my apartment by myself most of the time. It’s getting to the point where even that isn’t enough. Cabin fever gets the best of me because I love to be outside, but living in the city overwhelms me to the point where I have no choice but to stay indoors most of the time. Even a trip to the nearby park seems like an impossible journey when you are worried about who you might run into. The occasional dinner, family function, or errand I manage these days leave me over stimulated and exhausted. Going to the grocery store is a nightmare of lights and sounds and people that I can’t avoid because I only eat certain brands of certain foods. All I want to do when I’m done is go home and go to bed. Just the idea of going out into the hall of my building can be too much to bear sometimes.

I want to live in the woods. I want trees, and running water, and rock as far as the eye can see. I want my own little room in the attic where I can hang things from the ceiling, and paint on the walls, and fill one end with pillows for curling up and reading in. I want to be able to step outside my door without being immediately assaulted by the traffic, and the lights, and the hordes of people going this way and that. I want to be able to see the stars at night, and to sit by the fire quietly thinking. I want to live where the world can’t find me unless I let them.

Its not that I don’t want any contact with people at all, on the contrary, I am fascinated by people and desire to connect with them, I just struggle with face to face interaction and social etiquette. The few people I do interact with on a social level, including my boyfriend, are either on the spectrum or highly open minded people who can see past these weaknesses. Despite these difficulties I have found a way to connect with a broader slice of the world at large through the internet. I have found a medium where eye contact doesn’t matter and everyone is free to pursue what brings them peace and happiness, where people don’t have to ignore my tapping feet and worried expression to see the truth in my words.

Some day when my situation is a little better I can move from this city and find my little piece of heaven in the woods. Until then I will bide my time here in this apartment, adventuring out into the wide bustling world only when I have to. Those who know me will shake their heads and forgive me, just another way that Alei is different from the rest. Those who understand me will recognize that it’s what I need to do and love me all the more. The rest of the world will pass by my doorstep and never even know I’m here. Its better that way.

The Missing Voice

I’ve been doing a lot of research these last few weeks. I have a driving need to find out exactly where Autism fits into my life so I can decide where to go from here. I’m shocked at what I have found. In mainstream coverage there is one thing significantly lacking. Where is the voice of Autism? How can people who have no idea what it is like to have Autism claim to know all the answers about how it affects your life and what you should do to “cure” it? Why are we listening to the NT parents of Autistic children and not listening to the adults who have lived with this their whole life? Those same adults who were once children with Autism.

I see a general sense of panic happening over the issue of Autism, and I don’t really see the point in that. I’m all about getting the stats out there but this tendency to react with horror and disbelief is a little childish in the face of the facts. An average of 1 in 150 children are on the Autistic Spectrum, and I agree these numbers are staggering, but they are not new despite their relatively recent appearance. If 1 in 150 children have Autism then 1 in 150 adults have Autism. You grew up beside us, the quiet kid at the back or the class clown. You worked beside us and maybe once in awhile wondered where our minds were wandering off to. You sat beside us in the coffee shop and wondered what book we were reading. You sat beside us in the movie theatre and didn’t even know we were there. Autism isn’t new, people panicking about it is.

This rush to find a cure frustrates me. How many Autistic people did they talk to before they decided we need a cure and how much of this push is coming from parents who just want a “normal” child. I’m amazed that people who consider themselves intelligent and rational are buying into and contributing to this hype. I’m even more amazed that they perceive this as the whole truth when it is so blatantly half of the story. Digging deeper the real story is there, the endless accounts of people who have lived with this their whole life. Acceptance of who they are. An overall sense of confusion about why the world can’t accept them as they are as well. People who know that like everything else in life it isn’t all bad, that the upsides to being Autistic more than balance it out. People who wouldn’t want to be NT for all the money in the world. Oddly enough, I haven’t found anyone with Autism screaming for a cure.

Normal vs Sane

What is normal but a figment of their warped imaginations? It doesn’t exist in my world, never has, despite the endless times it’s been thrown at my feet. They tried to throw it at me but it never stuck, how could I be something that doesn’t exist. I may as well try to be a unicorn or a dragon for all the good it would do me. I can’t be anything other than what I am, and try as I might I will never master the magic of transformation. I tried and I failed before I learned how to mimic their cries and let them come flocking to what they wanted to see, I’ve forgotten now how to do even that. Not that I care.

I refuse to pretend, I’ve spent my life pretending and I don’t think it’s too much to ask for my loved ones to accept me for who I am. I know it isn’t for most, the ones who already knew about my world and love me and would never ask me to change, but I worry about the rest. Will the social stigma Autism get the best of them? Will they crumble beneath the pressure of the media to find a cure? Will they stop seeing me for the person I am in the face of what they see as a disease? Or will they open their minds and their hearts and see the truth about the girl standing in front of them and all she has to offer? I don’t know, I can’t predict how they will react, I don’t understand them at all. It seems so easy to me. Stop trying to change the things you have no control over and just accept reality into your life.

I’m not hurting anyone, hiding away in my little world. I don’t pose any threat by remaining peripheral from all those but the few who will meet me half way. I could wish for the ability to expand this close circle, I could visualize it in my mind, but still I would open my eyes to find that the power is not mine to make their choices and all that remains are my whispers and the hope that they will hear them. One little voice saying that trying to be normal is counterproductive to remaining sane. You may as well try being a unicorn, or a dragon, for all the good it will do you.