Masking, and well….masking

Masking is a very common word in the ASD community. Basically, we all mask to survive. For those of you who are not on the spectrum (sorry!) masking is when an autistic person tries to blend in and act neurotypical. For the record, it is very hard work. I don’t mask when I am at home because I am surrounded by my autistic family. It is one of the few places I feel safe. When I am out in public, I mask. This means I try to make eye contact (I may actually be looking at your ear), I stand up a bit straighter, I try very hard not to stim or hum or wiggle my fingers, and I am hyper aware of my surroundings. I could do this a lot when I was younger, and before I was diagnosed. Now, I find my endurance for such things is waning, and I tend to care less about how I appear to others. My daughter, at age 17, has great endurance for masking, surrounded all day by other college students, but it comes at a price. At the end of the day, she needs to retreat to her attic loft and not interact with anyone for several hours. Boo masks to a degree. When he is out with Alissa and her friends, he tries very hard to come across as a typical 19-year-old. He eats neatly, uses good manners, joins in the conversation using Sam, his AAC, and his stims lessen noticeably. Though he greatly enjoys such outings, he usually needs a good 12 hours of sleep after they are over.

I have had people ask me, “How do I know if my child is masking?” Easy. If their teachers say they are perfect at school but they are coming home and exploding, you can bet your last dollar that they have just spent the last 8 hours of their day masking. They put up with other students, noise, confusion, awkward social situations, deadlines, etc. It comes out as what I call the coke bottle phenomenon. Imagine a bottle of coke sealed up tight. All day long this bottle is jostled about, bounced, and shook. At the end of the day this poor exhausted bottle comes home, the cap comes off, and it explodes everywhere. It had to wait until it was in a safe place to decompress, and home is where we all see the good, the bad, and the ugly. So, if your child’s teacher says s/her sees no problems at school but your kid is a hot mess at home, your child is masking.

So, how does one prevent the coke bottle phenomenon? Sensory breaks! Let the kid wear ear defenders, chew gum, use fidgets, have permission to leave the classroom for a quick break if things get too intense. Another big relief would be less homework. An adult works all day and expects to have the evening off to unwind. Students work all day and then are expected to do hours of homework after the last bell rings. Also, don’t push your kid to be social after school. They are probably exhausted. They may not want to get together with a friend or play on a team. They may just want to decompress. Signing them up for a sport they don’t want to play “for their own good” will only backfire. They need time to take off their mask and just breathe.

Now, I want to change the subject to a different kind of mask, the kind we were all wearing in public until a few months ago. You know, that mask, the one that covers your mouth and nose. Mask mandates have gotten more lax in the past few weeks, but the pandemic is not over yet. I am urging people to continue to social distance and to continue to wear a mask in public. During the pandemic, despite being super careful, my family caught Covid twice. Other than that, we have been completely healthy. No colds, no flu, no nothing. It was very nice. When the mandates loosened up, both Boo Bear and I got sick. I was miserable, but he was completely down for the count for a week. Illness is not the only issue, when he is sick, his seizure activity kicks in. So, not only is he sick and miserable, his epilepsy acts up. If you have never seen your child have a seizure, consider yourself blessed. They are terrifying to watch. The eyes roll back, the breathing stops, the limbs contort and writhe. As a parent or a bystander, the only thing you can do is protect their head, and time the length of the seizure. If is lasts more than a couple minutes, administer rescue meds. As the person comes out of the seizure, assure them that they are okay. Tell them what happened. Help them to a comfortable place, loosen their clothes and sit with them for a while. In Boo’s case, he will need to sleep for a good 12 hours just to reset his brain. Often after a seizure one will have full body soreness, as if they just ran a marathon. Their memory may be disrupted, and they may have obtained some physical injuries as well. Seizures are hard on the body. You can help prevent Boo and other persons with epilepsy from having more seizures if you wear a mask and help slow the spread of germs. It seems such a little thing to ask. Could you do it?

So, that is my take on masking, both psychologically and physically. When my teens and I go out in public we wear both kinds of masks. We wear a mask when we try not to look autistic. We wear a physical mask to prevent the spread of disease. Telling someone that they are a “sheep” for wearing a mask is never cool. They are wearing it to protect themselves and those around them. Please keep your comments on my mask to yourself. It is not hurting you or anyone else.

In a few minutes the bus will pull up and Boo Bear will arrive home from school. He will take off both his masks, physical and psychological, and rest up from his busy day. Blessings to his teachers who do not assign any homework. He is free just to be his own little person until the next day rolls around. If you can come home from work or school and only have one mask to take off, consider yourself lucky. If your child is coming home from school and exploding, consider what can be done to make his/her day easier out in the real world. Thank you for listening. Wear a mask, get the vaccine, and be good humans.