Autism Is Hard

By: Amy Shoppe

I’ve said it before, and I’ll say it again: autism is hard.

Some days, you think you’re coasting — things feel calm, progress feels real — and then, out of nowhere, a gut punch. Because the issues never fully go away.

With autism, life can be simple one minute, horrible the next, and average in between — sometimes all in the same hour.

As a mom to an adult son with severe behavioral autism, I worry every second of every day. More than any mom should ever have to worry.

Mostly, I wonder:

Is he happy?

What is he thinking?

What does he do when I’m not there?

No one will ever care for him like I do. No one will ever love him like I do.

He doesn’t have a girlfriend. He will never have a wife. I will never have grandbabies with his smile.

And I watch.

I watch people get annoyed with him.

I watch them ignore him.

I watch them stare too long or look away too quickly.

I tell stories about Dylan. Some people are sympathetic. Some are disbelieving. Some act as though they might “catch it” if they listen too closely. They just don’t get it. 

People read my posts and probably think how lucky they are that this isn’t their life. They probably think Dylan’s life looks amazing — that he’s thriving. And yes, some days he is.

But other days, I’m told who he hit. How he shattered his iPad. How he was kept home from the bowling league he loves because he was “too loud” and his caregiver “didn’t feel comfortable taking him.”

If you’ve followed me or our nonprofit, you know Dylan’s story.

He moved out at 17. When other kids his age were playing sports, dating, driving, loving life, Dylan was moving out of the only home he’d ever known. He didn’t understand why.

He had pictures telling him, “this is your new house. Dylan’s House.”

It was a basement in Campbell and it broke my heart but it was necessary.

I block that time out of my mind just to survive.

Instead, I throw myself into everything. I don't stop. I don’t give myself time to think or reflect.

Because autism isn’t a chapter in my life. It is my life.

Dylan’s House, the nonprofit, was born from that reality. Because I will never stop living this autism life. I will never stop fighting for better options, better homes, and better lives for these good people.

I vowed to help my fellow autism moms and dads. There has to be a better way.

And I’m not done.

I can’t be done.

Join us. Meet us. Give back.