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Welcome to Our World

For the first time, my teenage son with autism and I are ahead of everyone else. We have already developed a skill that the rest of the world is having trouble acquiring. Who would have thought coronavirus would be so…novel?

Long before stay at home orders, before shelter in place became a thing, we were killing it. Why? Because we have been socially distant for fourteen years. When we go out in public, it is nearly effortless to stay six feet from everyone else. In fact, our fellow humans make it easy. They stay at least six feet from us. Picture us in line at Starbucks, Thomas making a sound I can only describe as barking, a sound so loud my ears ring, and just like that, our perimeter is vacant. Thomas’s hands reach out to grope strangers who have moved against the wall in the Mobile Pick-Up area. It’s as if our fellow patrons read our personal autism rule book. Rule #456: do not reinforce a negative behavior. As a bonus, we are simultaneously working on #504: ignore tics. Unlike behaviors, they are involuntary. Anxiety can cause them to increase in severity, frequency and duration, or in our case, all three. The louder Thomas is, the further away people move. Voila! Social distancing on steroids. I take the smallest bit of pride in our being so good at this.

Admittedly, once Governor Wolf (rightly) put us on lockdown, life didn’t change all that much for Thomas and me. We live secluded in the woods, our house set back 1600 feet from the road. Once we exit the portal of our driveway, people beyond our immediate family appear like a sudden scene change in a movie. We are alone one minute, him barking and me trying not to react, and we are amongst the world the next, him barking and me trying not to react.

Even before Covid , we rarely emerged from our wooded cocoon. Thomas’s OCD increased day by day, year by year, until a decade was suddenly behind us. It became part of a past more distant than I ever could have predicted. We began to stay at home more and more. “All done!” Thomas would yell in response to my carefully constructed list of options for outings. “All done!”  Once in a while, extended family reluctantly agreed to tolerate us (tolerate him, but it hurts too much to make Thomas singular), and we would venture to a house beyond our sanctuary. Ours were visits frequently cut short by crying, screaming, and/or inappropriate touching of people, pets, and/or inanimate objects. When much-needed contact or a six dollar coffee outweighed the threat of the sudden revocation of the same (sometimes losing something is so much less painful than not having it at all), we might even go somewhere public—to fill a shopping list of arbitrary items, hit a drive thru, use a public swing rather than the one in our backyard. Generally, though, his agoraphobia trumps my need for…anything.

So, when people complain that they haven’t left their houses in four weeks, when they anguish over missing their loved ones, or talk of the difficulties of isolation, my friends with children on this end of the spectrum and I have to laugh. “Thomas misses his teammates,” I text my friend sarcastically. She responds, “Yeah, Alex is so upset that prom has been cancelled.” Hers misses his driving lessons. Mine won’t get to attend the spring formal or try out for the soccer team. Hers won’t be able to run track or apply for his first job. This goes on for an hour or so, back and forth, us pretending to face the loss of things we long ago stopped dreaming would happen
anyway. We play this game until it gets too painful. And then we stop.

Ours are not the kids featured in the human-interest stories that have become a regular part of the nightly news. The lives of our kids are not accurately portrayed by images of teddy bears in windows or sidewalks decorated with pastel chalk.  Weeks go by without our seeing a single other person and we barely notice. For parents like me and Alex’s  mom, seclusion became “the new normal” over a decade ago. Long before this pandemic, we already knew how to sacrifice our well-being for the children we care for. We already knew isolation. We already knew loneliness.  Welcome to our world. It’s sad isn’t it? Take comfort in the fact that, for you, this is only temporary.

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