Why I Put Autism in the Middle of our Lives

Autism is a part of our life every single day. So many of the ways we recognize and adapt to autism have become second nature for us. But, as natural as our life with autism feels to us today, I would not say that we “forget” about the autism. It is actually kind of the opposite of that.

This may not make sense to you. Most days it still does not make sense to me. I cannot forget about autism. I will never forget about autism. It is impossible. Why you ask? The answer is simple, although also painstakingly complex. I will not forget about autism, because I put autism in the middle of our lives.

That might shock you. The idea that I would knowingly decide to put autism in the center of our lives. But, I did.

Autism came into our lives without warning. We were not prepared to be the parents of a child on the spectrum. Like most first time parents, we were not even fully convinced that we were prepared to be parents to a typical child.

Autism was not in our lives until it was. And then in an instant it was everywhere.  It touched every single piece of our life. Our family, our friendships, our home, our finances, our possessions. Nothing was off limits.

Autism took things. Big things. And even though now we can recognize that it gave us other things in return; there is no way to find comfort in that at the beginning of diagnosis.

One day at a time we learned to live with the autism in our lives. We stumbled around a bit to find our footing. We approached some days feeling tentative and unsure. On those days we were careful to sidestep through life; strategically avoiding well disguised autism landmines. Other days we charged through life feeling bold and brave; sure that we could outrun autism.

But neither of those angles worked for us. We could not side step through our life. And we could not outrun autism. Both efforts left us feeling exhausted. Defeated. We were empty and depleted and in no shape to face the next day. Autism was winning in a big way.

So we changed up our strategy a bit. We put autism in the middle of our life. Why? Because now we know exactly where it is. We put it where we could see it. Where we could learn from it. Where we could always have an eye on it.

I know that autism impacts everything that we do. Some days there are small impacts; things that you may not see or recognize unless you know where to look. Other days the impact is large; you might as well put a flashing light and divert traffic. Uncertain of what each day will bring; we plan for anything.

We understand that autism is a lifetime diagnosis. So we choose to spend our lifetime learning how to make the intersection of “autism” and “life” as smooth as possible. For us that means acknowledging autism. Planning for autism.  For us that means not being afraid to say “our son has autism.” It is not an excuse. You will never hear me use my son’s diagnosis as an excuse.

Autism is an explanation. It is verbal confirmation that there is something real in our lives. Something that we are working through. Something that we struggle with from time to time. Something that makes us different from other families. A constant balance in a million different directions. A journey that has no end.

At first I put autism in the middle of our lives because I could not find a box large enough. I wanted to tuck it away and put it on a shelf. I wanted to give it an on and off switch. I wanted to be in control of the autism in our lives. But I quickly learned that there is no box large enough. There is no switch. And there is no controlling autism.

Today I put autism in the middle of our lives because I am not ashamed of my son’s diagnosis. I am thankful that his diagnosis provided a map for our journey. I am thankful that with each passing day we learn a little more. Each day we feel a little more comfortable along this uncertain path.  I am thankful that we, autism and our family, have learned to live in almost-harmony.

It is not perfect, but is is so good!

JS

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