Thoughts and illustrations on living with Asperger's Syndrome.

Thursday, November 1, 2012

Tiny Island

Today is the 3rd Annual Autistics Speaking Day. It also marks my third year of writing about autism. I have much to be thankful for this past year: the chance to create an animated short, to travel with the Juniper Hill crew, and to publish my second book. I am glad many of you continue to come here for laughs and insight. But often, when living with autism, there are no laughs or insight. The reality is that my daily life remains dominated by my inability to understand and coexist with other people.

I prefer to feel in control of my environment, and other people introduce chaos into it. They disrupt my equilibrium. They pop in and out, as it meets their needs and not mine. They are too fast, and too loud. Other autistic people are no easier for me to deal with than NT's. People irritate me. Or perhaps I irritate myself through my own discomfort and inability to articulate myself. Regardless, I find I deal best with others at a safe distance.

Most of my time is spent at the office or at home. I’m good at my job, and autism is a big reason for that. My work requires perfect accuracy, and perfection is what I deliver. I have a purpose in the workplace. I’ve learned the structure and I excel within it. It’s a foreign tongue sometimes, one that speaks with Important Words, like pursuant, and execute, and the delta, but I’ve become conversant in the language. I assimilate to ensure my survival.

Autistic people have no choice but to assimilate. Yet, we also desire to withdraw to our comfort zone, where we feel in control. This internal conflict threatens to drive us out of our minds, as Adam Bailey describes in a piece called Islands.
Our islands are awesome, but only to us. An island cannot simply fit into a school or workplace setting. Most others cannot feel comfortable on our islands, because it is so odd there. We cannot feel comfortable leaving our islands for very long, because it is so odd outside them.
 

It takes a perfect balance all the time in order to get by, and as soon as we stop working as hard, things get really difficult really quick.
Maybe in the workplace, assimilation is easier, because I have a clearly defined role. Maybe those of you who share a household also find it a comfortable fit, within easily definable parameters. But outside of familiar environments, there are simply too many unknowns. At times, sanity demands avoiding such uncertainty.

Leo Kottke sings in his song, “Tiny Island,”
I wish I had a tiny island floating in the sea.
Palm trees sway, don't get in the way, it's a tropical ease.
And everywhere that I keep my silence, no sound returns to me.
Just endless waves at the end of our days, the sighing of the seas.
Given the option, I believe I would cast off the civilized life for my own tiny island. I find solitude the most comfortable state, and increasingly, my lifestyle leaves no room for others.

I’ve grown less hopeful about autism acceptance by the greater community. I know the world will not change for me. So I have fewer laughs and insights to share with you in this space. A few successes doesn't make it easier to navigate a daily existence that drifts from mundane to chaotic. As Adam says, this is how I am, the real-life me. Man wasn’t meant to live on his own tiny island. So why does it seem so enticing?

22 comments:

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    1. I first heard this song some 15 years ago, it is a great one.

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  2. Dear Matt, it sounds like you're exhausted and depressed. All people need time for themselves to recharge after big expenditures of energy. Please don't believe this happens only to people with autism, or because of it. Give yourself a break. If you need to talk with someone about depression, do it. It's allowed. The general public IS becoming more aware of the needs of a neurodiverse society. Your efforts are part of the reason. You can have your island, but you need not be lonely.

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    1. Just to clarify my motivation for writing this post, it's not realistic to be positive about autism all the time. Autism sucks sometimes, and if this day is really about listening to autistic people, I hope others will listen even when we say what we hate about it.

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  3. I know the feeling too well, Matt. But I have chosen to 'reroute ' some of my energy into believing that things only seem to be that way. It has taken me some time and often I find myself needing to once again reroute that energy on a regular basis. I look and I will not stop looking. If I'm going to live my life by furniture shopping for my own little island, then I will be determined to make it as pleasant as I can! The more pleasant and peaceful it is, the more refreshed and happy I will be when I emerge from my island.

    Chris

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    1. Thanks Chris, I am glad that kind of reasoning works for you.

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  4. I just love the way you write, and so clearly process and articulate your thoughts and feelings. It helps me every day with the guys that I live with... they have truly benefited from your insights this past year. Thanks Matt.

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  5. Sir, you saved my dark aspie day with this beautiful and honest post. You are brave. Thank you very much.

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  6. I hear you. Thank you for your honesty here. And, also, thank you so much for venturing off of your island now and again, because you are such an important person. I hope you really know that.

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    1. You're welcome, Stimey - much appreciated.

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  7. It's so hard to let people onto the island and when I read Adam's words (and yours) I felt how true that is for myself and my kiddo, how we're torn on wanting to share our island and yet keep it as our safe place of refuge. Refuge can be peaceful, like that place you showed us when you went on that work retreat. Refuge can be isolating, like sitting in your room and being unable to speak any words that don't come out like nonsense. Reaching out is exhausting, troubling, nerve-wracking. Sometimes it works and in that moment, even if it is fleeting, it's like you hardly notice there are another set of footprints on your island.

    Thanks for sharing your personal thoughts, it's something a lot of us have difficulties with, so it is always welcome.

    - Hanne



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  8. I like the way that you describe the constant struggle to fit in with daily life. It really is a constant effort and takes a lot of energy. I think it is sometimes hard for people to understand how crucial it is to have the downtime that comes from retreating to that island, and that withdrawal from the rest of the world is necessary in order to recharge and try to get by for another day. Thanks for posting this, Matt.

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  9. Matt,
    I'm tired down to my soul, and it sounds like you are too. Please know that my world and my son's are better places because you have helped to build a welcome bridge between us and our separate, unique needs, a bridge that we cross with respect, caution and love. Thank you for all that you do.
    Sincerely,

    Beverly Brown

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    1. You're welcome, Beverly. Thanks for those kind words.

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  10. I have two boys with autism and they have taught me how important and beautiful their own individual islands are. As an NT I never knew that before. That that kind of solitude even existed. Of course I understand that I have that choice and I respect that the lure of the island, without the choice, is inexorable and cruel and hard sometimes. I'm just saying that the NT world doesn't always make sense to NTs and that we have a lot to learn from autism. I love what you do. It IS a mixed up, muddled up, messed up world but a much richer one with people like you and my boys in it. On a personal note though, I wish you peace of mind.
    Kristina

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  11. Your heroic efforts - your words, your music, your art - have long been an inspiration for all of us.
    Your achievements have been remarkable. Your voice is loud and clear and needs to be heard. There will always be discouraging moments.

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