Isolation and Autism

Like most parents with an autistic child, I have read a lot of books on autism. It interests me how few mention the isolation factor, because to me -- and my autism friends -- it's huge.

When Joseph was about 1 1/2 and the autism became really dominant, going places turned into a huge problem. He would either scream bloody murder or just flee the scene -- running to the nearest fence, where he could stim as he ran back and forth along it. He could do this for up to an hour. If I tried to drag him away, he'd scream his lungs out.

It got really embarrassing, and really frustrating. There always had to be two of us if we wanted to attend a gathering -- family reunion, parade, etc. -- one to chase the kid and one to actually attend the gathering.

And if Joseph screamed, everyone would turn to look (trust me, you couldn't miss that screaming)! The only way to calm him down was to leave. Sigh. So, after a while, we just stopped going places.

With the hindsight of understanding, I now know that going places, especially unfamiliar ones that included lots of people, was extremely difficult for him. And stimming -- repetitive motions -- calmed him down.

But at the time it was just rough. Blue Eyes and I snapped at each other a lot. We missed our friends. We missed our life. We thought we'd be stuck forever, the 3 of us, in our house, and that was that.

Is there any wonder that autism marriages have an 80% divorce rate?

I remember later on, at a support group with other autism moms. The program director of a children's services dept wanted to meet with us to talk about our needs. One of the things she offered was classes about parenting special-needs children.

"But how do we get there?" asked one of the women. "We have our kids to look after."

"Oh, we offer childcare," answered the woman.

We all practically screamed at her simultaneously: "Chilcare doesn't work for our kids!!"

That was it in a nutshell. We could barely get support because we couldn't leave our kids almost anywhere, with almost anyone. And even the professionals couldn't understand that.

That, my friends, is what made today so very special.

We have amazing friends. We all share a spiritual bond, whatever our path, and we've known each other for many years. During the summer these people gather for a monthly potluck and pool party at one of our friend's homes.

For over three years now, we haven't been able to attend these gatherings. Joseph just plain hasn't been ready. But today, we felt he was ready, and we went.

We were driving along and Blue Eyes and I agreed that, if we stayed an hour and things were very positive for Joseph, we would consider that a great success.

But we stayed 2.5 hours! And Joseph had a fantastic time! We had some hurdles -- namely, lots of dogs. Joseph isn't quite over his fear of strange dogs. But he dealt with it, which was amazing.

He enjoyed the company of the two other kids who were there. A bunch of us played Ring Around the Rosie together many times, and Simon Says, and all sorts of other silly games that you play when you're hanging out with 5 year olds in a pool. Joseph joined right in with us. He even led Simon Says a few times, telling us to "Rub your bellies!"

No one said anything because we were right in front of Joseph, but there were many unspoken messages between us. Messages like, We are so happy you are here and we are thrilled to see Joseph doing so well. One friend did say, "it's a miracle."

Perhaps it is. And here's another miracle: Looks like we get to join the human race again.