Saturday, 4 September 2010

The First Letter

I don't often talk about having Aspergers. Not really talk about it properly; what it means, how it affects me, how I see the world. It's very difficult. Sometimes there simply aren't words.

I don't mean that in the pathetic "this is so terrible it's beyond the remit of the English language to express my grief" sense. I simply mean there are literally no words for some of the things an autistic person experiences.

Take, for example, what happens when I try - or am forced - to listen to two people speaking at once. The classic example is some impatient person demanding my attention when I'm already on the phone to someone else.

First, I immediately stop being able to understand any spoken language at all. It's as though both my phone correspondent and the person standing in front of me have suddenly started speaking an obscure Chinese dialect. It's complete gibberish. For someone who works with the spoken word for a living, and whose only real skill is words, this is terrifying.

If it goes on for more than a few minutes, the gibberish is replaced with white noise. Every aural input, from my conversation(s) to the traffic outside, music on the radio, everything, is replaced by the roar of static, the noise a radio makes in between stations. It's deafeningly loud regardless of the actual volume of my surroundings. I feel lightheaded and nauseous, and if it keeps up will make me physically sick.

This phenomenon is caused by real, physical, identified-by-science wiring problems in my brain. I simply do not process sensory input the way most people do.

Nobody has ever asked me how I experience the world. Some people have made some educated guesses, based on their knowledge of Aspergers in a general sense.  A few chose to believe that I'm making it up, or that I'll 'get over it'.  Or that because I'm not "visibly autistic" - whatever that means - I can't really have the problems I say I have.

This is not a hobby, not something I do for fun, or to prove a point, or because I think it makes me edgy or cool or special. I have a disability.

Much noise is made about early intervention for small children with autism.  This is a good thing. But Aspergers has only existed as a diagnosis since I was in middle high school.  I was not diagnosed until I was 26. I had no early intervention. I haven't even had late intervention, really.

And I am not alone. There are many, many undiagnosed Aspies out there.  A lot of them - us - probably don't even know that Aspergers is a thing, or that there could possibly be a them-shaped space on the autism spectrum.

I'm a success, I suppose.  But I can't help but think things could have been different had I understood the world a bit better.

Take school, for instance. Nobody explained to me that what you're actually supposed to learn as a child isn't the three times table and how to trace a map of Australia, but how to play with other children, how to not cry in public, how to become part of a group, how to start and continue a conversation. And because nobody considered that maybe I'd have trouble learning those things, nobody noticed that I didn't.  I'm learning now, but it's hard when everyone else has a 30-year head start.  But I'm learning.