We're in Hiding

You don’t see us at the grocery store.

You don’t see us at the birthday party.

You don’t see us at events geared toward special needs children.

You don’t even see us at the autism walk.

We’re in hiding…

You’ve heard me talk about how our autism is a little different than what you might be used to seeing. The Asperger phenotype has completely dominated most people’s stereotypical view of autism. Media coverage focuses on the kid that gets to run for the touchdown, sings the national anthem, gets voted Homecoming King. You don’t see families like ours…well strike that, you do, but it’s generally in contexts that you don’t want to see…the children that are abused by caregivers, that wander and are found in a lake, families that have their neighbors leave nasty notes on their doorstep.

I’ll be perfectly honest (shocker right?). Part of the reason that you don’t see us is because we don’t want you to see us. We don’t want you staring, pointing, judging, or even desperately trying to ignore us. We don’t want you giving terrible explanations to your children when they ask “What’s wrong with him?” We don’t want you looking at us like we suck at parenting. We don’t want you to see us and pity us.

But the other (larger) reason you don’t see us is simple self-preservation. We protect our children at all costs. We try to avoid situations that make him miserable…for his sake, not ours, and not yours. But the balance is tough. When do we push him outside of his comfort zone, push ourselves as a family outside of our safe haven? He needs to have a chance to discover the world on his terms, and the people of this world are just going to have to suck it up and deal with it.

Every now and then, we’ll venture to a birthday party. It usually has to be a good friend and someone really familiar with (our) autism. The venue has to be just right (contained), and we have to have an easy exit strategy. It only happens every now and then.

We’ve tried the grocery store so many times. Inevitably, it ends badly, but I don’t even like to be in the Sunday afternoon mayhem (how do you not know where you are going?!?), so I sympathize.

Two weekends ago, we were lucky enough to go to a Special Needs Family Weekend at Camp Cullen. It was a HUGE step outside of our normal, but I’m so grateful we did. Was it perfect? NO! Did he lose his mind multiple times? YES. Would we do it again? Absolutely. Because the good outweighed the bad. Because we came out of hiding just for a little while. Because while we may have been the most “severe”, no one looked at us negatively, they simply saw a family trying…a family out of hiding. That weekend will get its own separate post, but it’s worth mentioning in this context. I’ll just say that I know there were many families who would have looked more like ours that didn’t even try to come because they were afraid. And that I understand. And that I second guessed myself 500 times. But that it was worth the risk, and I hope I can encourage other families like ours to give it a shot.

Fast forward a week to the autism walk here in Houston. A friend posted that she was with us in spirit but wasn’t there in person because she knew her child’s limitations. I was there, but I was wearing my scientist hat. I was lucky in that my entire work team was there, and we had a great morning of talking with families about our study. But we didn’t go as a family, we didn’t have a team, Kellen wasn’t there. I saw lots of autism families, lots of autistic children, but very few that looked like us. We don’t go to these kinds of events, our kids can’t take it right now. I’m grateful for those who can, but as I saw one family trying to work their way through a major meltdown with a kid around Kellen’s age, I was taken by the fact that even these specific autism events are NOT geared to the needs of OUR kind of autism. It was loud, it was crowded, it was spread out and confusing.

We made the right choice in not taking Kellen to the walk, and we made the right choice in “going to camp” as a family.  We choose our outings based on Kellen’s needs. I’m done worrying about what other people think. Yet, we need more opportunities that welcome the more severely impaired of our clan. They deserve more. Our families deserve more chances to try.

So just know that you may not see us, but we’re here. We’re surviving the best we can. And when we do make it out into the big scary world, please please be kind. A smile from a stranger while we’re trying to calm a screaming flailing child can be just the fuel we need to get through a tough moment. Be accepting, be kind, be open-minded, and if you have a question, just ask. Larkin is generally our family spokesperson, and she would love nothing more than to talk to you about her brother and autism in general ;)