Turning the Wheel

Turning the Wheel

The meeting of the Literary Society was just about to get underway when the young man sitting next to me stood up and socked me in the face. The impact knocked my glasses across my nose and stung my cheek. He finished pulling off his jacket and sat back down next to me. I rearranged my glasses on the bridge of my nose and thought, Aha!

Over the next hour, I paid no attention to what was happening at the podium. Instead I zeroed in on the vibrations from the fellow’s bouncing knee beside me. He shifted his posture continuously throughout the presentation. Every fifteen seconds or so he cleared his throat with a sort of guttural growl. With each new quirk I grew to like him more and more. He was so much like my own son.

The face of autism is changing. 500,000 children who fit somewhere along the autism spectrum today will become adults in the next decade. There was a time when my fragile little boy fit into the bend of my knee and I believed he would always be safe there. During those years, hard-wired to protect him, my husband and I, and often David’s two older brothers, stepped in as his champions. But that child is no longer a child. My David is one of many young Americans who have come of age in the Age of Autism, and it’s time to change the conversation.

We must turn the wheel beyond blessing and blaming, causes and cures to the very “right now” of creating opportunities for a decent quality of life for these young adults — because young adults with autism are entitled to private lives just like you and me. Of course, independence involves the dignity of risk. And that means letting go. It hasn’t been easy but I have found failure has been a great and empowering lesson in my son’s life. Especially when it comes with a “do-over.” And who among us parents doesn’t want to be able to say to our adult children, “Go lead your own life.”? In a perfect world, it’s the natural order of things. But I have never met anyone who lives in a perfect world.

Moving forward, the greatest obstacle the autism community faces is apathy. The best way to counter this is education of the general public. That means autism awareness not only in the schools, but also in the job market, the housing industry, the health system, the courts, and quite certainly the police force. But it also means making room for the autistic worker in the cubicle beside your own. You know who I mean. The quirky employee who jostles your arm and spills your coffee, then walks on by. Jot this down: a sense of humor helps unruffle everybody’s feathers.

Let me tell you a little more about my David. He is a fine looking six-footer with a five o’clock shadow and distant brown eyes. At 24, he has “aged-out” of the special education system, an inevitability that we gave shockingly little thought to while battling school policies and school bullies — the quotidian conflicts parents of autistic children spend so much energy on. Wow. It all seemed so important at the time.

But now, after all those exhausting years, our known opponents have disappeared, only to be replaced by the devils we don’t know. But what we learned was that we should have kept our son in public school and our money in our wallet because we are going to need it for what happens next. Because what happens next is the rest of David’s life. 

I haven’t provided you with a solution here because, as members of my tribe are quick to point out, if you’ve met one autistic child, well, then you’ve met one autistic child. Of course, early intervention is key, but there really is no best way for a particular person on the autism spectrum to live his or her life.

Still, you might want to tuck this thought away: Your loved one’s life is about all of the choices you will make together and not just the early ones. Whether it’s protecting him from an unscrupulous school bully or fighting for the right to competitive employment, the choices he makes going forward will create the map to a life he must one day call his own.

Roots and wings, folks. It’s the best we can do.

Photos by Katri Niemi and Looking Glass

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