Living in the Middle: Along the Autism Spectrum

Nothing in our life is immune to autism. It surrounds everything that we do. It is loud. It is unforgiving. It is steadfast and resilient. It is always there. At times it is idle. It disappears into the background. In certain moments I may even allow myself to forget that it is there. And just when I begin to feel comforted by the absence of autism; there it is.

The autism comes and goes at is pleases. It crawls inside of our most precious moments. It grabs ahold of anything and everything within its reach. It is unapologetic. Ever changing. Ever demanding more. More time. More money. More energy. More of everything we have to give. And then more, even when we run out of things to give. More than I am. More than I ever thought I would need to be. More.

Autism is a part of every single piece of my life. It happened slowly at first, and then all at once. In the beginning I put autism in a box. I thought that I could just keep it there. I thought that I could be in charge of when and where autism would infiltrate our lives. I was wrong. You cannot keep autism in a box. Sure, you can choose to put it inside of a box, but it will not stay there.

Autism goes where it wants. It burrows into the deepest parts of you. It becomes a part of who you are. It becomes a part of your identity. You lose the ability to separate autism for any part of your life. It changes you in ways that you never imagined it could.

And after this happens it is natural to resent the autism. How dare it be so bold to take over every piece of my life? Taking over my son wasn’t enough?

I do not have autism. I can understand and control my emotional responses. I know how to appropriately match my emotions with the context of the world around me. I understand how to behave in a way that is expected and socially appropriate. I am in control of myself.

My son is not. My son has autism. My son does not understand his emotions. He struggles to understand the context of the world around him. He is unable to adjust his emotions to be expected or socially appropriate.

His autism is a giant that we go up against every single day. We look in the face of something that scares the crap out of us and we figure out new ways to come out ahead. We ask questions that we are not prepared to hears answer to. We look into treatments for symptoms that we do not fully understand. We put our faith and trust in people who barely know our son.

We take this journey one step at a time. Sometimes the steps are tentative and filled with fear. Sometimes the steps are sure and filled with certainty. And a lot of the steps are somewhere in the middle.

This journey along the autism spectrum with my son has taught me a lot of things. One thing I have learned is that I have to find a way to live in the middle. In the middle of fear and certainty. In the middle of optimism and negativity. In the middle of hiding and exposed. The middle or victim and hero.

In the middle I am safe. I am moving forward. I am focused. I am strong enough to fight if I have to, but cautious enough to look for the answers in other places first.

In my weaker moments I leave the middle. I go somewhere else. Anywhere else. In those moments, for any number of reasons, I need to feel something different. I need to feel the intensity of the fight. Or, I need permission to completely retreat. I need to be a hero. Or, I need to be a victim. I need to believe I am moving mountains and making progress. Or, I need permission to accept that I am powerless to impact change.

In those moments I need those things because that it what happens along this journey. You may be existing peacefully and contently in the middle, and then in an instant something shakes you to the core. Something propels you to the front line to fight like hell for your child. Or, something triggers the impulse to crawl up inside of yourself and hide away from the world. This journey pushes you to those extremes.

And in those moments you go where you need to go to survive. And then one step at a time you fight your way back to the middle.

Autism came into my life and changed everything in ways that I was not prepared for. It is an unwelcome presence in our life. But we know that autism is not something that is going away. So each day we try a little harder to work towards acceptance. Each day we learn a little more about taking back control. Each day we are more. And being more allows us to give more.

I am not a hero. And, I am not a victim. I am just in the middle doing the best I can to be enough. To be more.

JS

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