The Social Distance Of An Autism Parent

If you’re friends with a family that has a child with autism, you’ve probably seen the memes. If you’re in a family that has a child with autism, you’ve lived them. Either way, in a year that will be forever remembered as the year of “social distancing”, I consider myself a veteran.

It’s tough discussing the isolation that families like ours can feel sometimes because, to be honest, my son isn’t the sole reason for it. Sure, he’s non-verbal and the easy answer when explaining our absences through the years. But, as I fully admit, a lot of that had to do with me too.

Today, I can proudly say that there are many times when we have no issues at a gathering or event. We get to a concert, he’ll settle into his seat, lean his head back and go with the flow. It’s moments like that where I say, “Oh. See? I worry for nothing. This kid has it all under control.”

Truth be told, though, it was a long road to get here. It took class trips into the community and battles here at home to show him that he can handle more than he realizes. I try to remember this during my episodes of selective long-term memory loss, where I pretend like it’s always been smooth sailing.

It hasn’t been. In fact, it still isn’t. Some friends have understood. Others haven’t. To be completely honest, sometimes I didn’t either. Even, to this day, I have to accept the fact that a trip into the city and $40 each for tickets might last all of five minutes before a meltdown sends us home or into the waiting area outside. Because of that, many of my daughter’s family events lead to a split down the middle, to avoid forcing her to leave early. It’s that anxiety of a premature departure that has led to many bouts of, as they say on the news, social distance.

socdFor other families, the reasoning can be sensory. Your friends’ kids like fireworks or bounce houses while your kid hates them. There are a number of reasons why you might be excluded from the group and, because of that, you immediately begin to find yourself on an island all by yourself, watching your social life sail away.

We’ve missed holidays and parties for friends and family through the years because of it. Thankfully, as he’s gotten older, my son has become better in these situations. But, unlike many of the other things he’s grown out of, I don’t look back on those days and think I made a mistake for missing out. There simply were some things we couldn’t be a part of.

When your kid makes progress and can do more than you ever dreamed, it’s hard to think back to the times when they couldn’t. You mind plays tricks on you and you forget just how far you’ve come. Whether it was to prevent him from stage diving into a card table of appetizers or another roadblock that made attendance a sure-fire disaster, staying away during those times was necessary, even if they feel like an overreaction in hindsight.

It’s not just about taking the kids out either. It’s about life after the kids are done for the day. Maybe you’re too exhausted from the extra care that extra needs might demand or stuck for a babysitter you can trust with a child who, even as a parent, you sometimes have a hard time deciphering the demands of.  Sadly, sometimes it’s emotional distance. It’s the inability to discuss dealing with concerns that other parents, despite having children around the same age, can ever truly understand. That can often create the deepest divide of all. Either way, social distance, isolation, and the walls closing in all create a perfect storm and, before long, it’s been like a year since you went anywhere, much less with anyone. A trip to TGIFridays is like going to Disney World.

Now, thanks to our world-wide quarantine fever-dream, we’re all in the same boat. Corona time has turned into in-home time and no one is doing anything fun for the time being. Whether you have a child with autism…or no children at all, you’re stuck inside free from any social events on the horizon. I guess this is the part where I give you some words of encouragement, wisdom, or a great plan to deal with it.

Nope. It sucks. That’s it.

The thing about social isolation is that you never realize how much you want to do until circumstances tell you that you can’t. For someone who doesn’t work outside the house, you might spend days upon days at home during typical times without batting an eye. The second someone tells you that you can’t go out, you suddenly can’t wait to get out.

You think about how you planned to become a sailor on the high seas or getting your pilot’s license or joining the circus. But no. You’re stuck inside. Damn you, Coronavirus! Damn you all! I had dreams!

I feel you, kiddo. I’ve been in and out of this boat for a long time and, while we’re not sailing the high seas, we’re sailing together. The best advice I can give you is to keep rowing, think about land, and, if you need to puke, just lean over the side.

We’ll all get through this. Social distancing may be rough, but it’s the age of social media. So, we’re all still together in many ways. The good news is that we don’t have to go out to a group lunch to see what everyone is eating. Give that picture of grilled cheese a thumbs up and scroll on. We’ll be back to pushing each other out of then way at Target in no time.