Wednesday, April 2, 2014

Autism in our World

Today is World Autism Awareness Day and as friends, family, neighbours and classmates have donned The Blue in a show of support I've been reflecting back on our journey with Autism. As I wrote about yesterday, we are in a much different place today than seven years ago when Dude was diagnosed. We have all grown, matured and learned volumes about life with Autism and on the surface it might appear as though living with Autism is no big deal for us but that would only be partially true.

Our day to day life is much easier to manage than some other families. Dude is verbal (maybe too verbal sometimes!), high functioning and very intelligent (often too intelligent for his own good).

-- This blog post is interrupted by an Asperger's moment --

I started writing this post three hours ago. I was just beginning to write about how much easier our life is now and how well Dude is doing when he burst into the room in a frantic fit of upset because of something that happened at school that he couldn't understand. He was on the verge of a full fledged melt down because he couldn't understand why someone would behave inconsistently towards him.

We talked for two hours and just as abruptly as the conversation started it ended. It was 15 minutes past supper time and I hadn't even started cooking it yet so he dismissed me. Now dinner is done and cleaned up and he is content to continue to work on the language he is inventing. That is the reality of Autism in our world.

A friend once described life with Autism as 'living in a minefield, never sure of when or where the next explosion will come." I have never heard a better or more accurate statement about Autism. On the surface a minefield looks like a field. It might even look like a pleasant field with flowers or grass growing on it but its not until you step into the field that you realize how unpredictable and jarring this field can be. As long as nobody moves nobody gets hurt but that's not how life works. You have to keep moving, life is in constant motion so you are at constant risk of experiencing an explosion.

When Dude was little we could have fifteen to twenty explosions a day - no joke. Now that he is older we can go a day or two without hitting a mine but when we do watch out! He takes it personally when life doesn't work out as he expected. He feels deeply betrayed when others don't play by the rules of social norms, as he understands them. He is defensive when his actions, words or attitudes are questions because he is terrified of making mistakes.

Because we live in a minefield we spend countless hours painstakingly digging up mines and defusing them. The ones we can't defuse we mark and do our best to avoid as we move about our field. And sometimes the mines we fear the most are duds; they aren't loaded and we've been stressing for nothing.

Sometimes people walk by our field and comment on how nice it seems, how lovely it must be to live in our field, how easy it is for us. Outwardly we smile and thank them for noticing, inwardly we scream, 'You've got to be kidding me!!!' because we know the hours, the tears and the stress that has gone into defusing our field.

Sometimes I get angry and frustrated. Often I am exhausted. I walk the thin line between optimism and bitterness, one moment of self pity could push me into the abyss, so I just keep moving forward, marking and defusing as best I can. When self pity does threaten to overwhelm me or when anger simmers just below the surface I remind myself that if I feel this off kilter then how does Dude feel?

He didn't choose this wiring system we call Autism. And neither did Crafty. They aren't trying to be difficult or defiant. In fact, they are desperately trying to make sense of a world that is as foreign and strange to them as their world is to us. They want to connect with people, they want to love and be loved. They want to relax, laugh and enjoy the world but how do you relax in a mine field?

You see, the minefield isn't them or their reactions. The minefield is the disconnect between our worlds. Sometimes the mines are set off by their Aspergian points of view and just as often mines are set of by my emotional reactions to a world that makes no sense to me - their world.

So today I think of its not really World Autism Day but Autism World Day - a day to acknowledge and respect that Autism is it's own world within our world and our world is a world inside Autism. We are separate yet overlapping, apart yet together - coexisting in one giant field ... trying to dance between the mines.

I have my own little world but it's okay, they know me here.

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