This comes out of a response I posted on Facebook, and could be called, the challenges of wearing a mask when you’re on the spectrum. The original post provided legitimate reasons why someone may not be able to wear a mask in public and included those who were victims of assault where their face was covered, legitimate health/breathing issues, as well as others. One reason provided was for people on the spectrum having a hard time. It was not about those who just don’t want to…but those who cannot.
As a parent with multiple kids on the spectrum, we’re very conscious of our own children’s safety and the safety of those around them as they cannot always relate what is happening to them. Nor can you simply communicate with them to explain why. While our children don’t have additional health problems, we know many parents that face health issues on top of Autism. As such, we have chosen to keep our kids home as much as possible for their, and everyone’s safety, but that isn’t simple, or without issues.
While I thought the post was very well thought out and encouraging for others to think about why, not just finger pointing and blaming people, it quickly turned into that as it does so often on the Internet. It wasn’t long before the “Just wear a mask” group was yelling at the “But I don’t want to” group and back and forth. So below is what I posted (slightly edited now) so that people know what we’re going through. What types of issues a family has when there are those that cannot wear masks. I’m sure we’re not the only one’s like this, and each person and family going through this will have their own stories.
Having multiple kids with autism, we keep them home to avoid the nasty remarks because they have a hard time wearing masks. (They cannot mentally understand, just because they physically look like they should be able to.) We get enough comments and snide remarks normally because they’re not like others, act differently etc. we don’t need to add to it.
Change is difficult for someone on the spectrum. My youngest tries to pull my mask off because it’s not normal for him to not see my face. Forget him trying to wear one – it’s off before it’s on. The “difference”, the texture, and pressure, etc… for some it can actually cause physical pain. Ours are lucky enough that it doesn’t actually hurt them. It is “just” mental anguish.
Because of this, we keep our kids home and away from people as much as possible. Our routine is completely shot and nothing is normal. And for someone on the spectrum, this is the worst possibly scenario. We do our best, but …
So let me tell you what it’s like to not let your kids go out because they can’t be like others and follow “simple” rules:
Multiple daily meltdowns (per child). They look like temper tantrums to the untrained eye, but it’s different in that it’s a physical response to neurological issues because there is no more normal. A meltdown can involve hitting oneself, banging against the floor with your head or while body. Screaming, crying, pinching, and other responses can be part of a melt down. It can take on other lesser known effects, in our case biting and eating non-food items – rocks, wood, paper, etc. One of our son’s scratches himself so bad he might have permanent scares on his face and chest. We collectively spend hours a day rocking and holding him trying to get him to not hurt himself.
Mood swings: Everything is fine, until it’s not, and laughter becomes sobbing, and there’s no way for them to tell you why. Imagine your adult autistic child (a physically fully grown adult with the size and strength of someone in their 20s but who is mentally like a first grader) who comes to you crying, asks you to snuggle with him in bed because he’s so distraught – not that he can tell you in those words, or explain why.
Repetition for asking for what they can’t have: We’re asked multiple times a day when we can go out to eat. They really want to visit the new Chick-Fil-A, but we’re not going out, and they don’t understand why others can. We’re asked at least 5 times a day (times 100+ days at this point) about going out to eat. Anyone who visits (delivery people, friends on zoom, etc) are also asked. And if they don’t know our response, the kids get upset and we’re back to meltdowns. Let’s not forget mentioning how much they miss their grandparents because no one can travel. Typically they see them every three months, and it’s been 7+ since we saw them. (Video call apparently don’t count.) So we’re reminded of how much they miss them, and ask when they can see them again.
And let’s not forget about going back to school. Every day, multiple times I day we’re asked if we’re going back in August. And we can’t answer what we don’t know, as things change. Not knowing, or not having an answer isn’t acceptable, and triggers an emotional or physical meltdown.
Regression: Autistics need to constantly keep up their people skills that they learn. What is simple and common for others, takes sometimes years of training to do something simple like look someone in the eye while talking. When the schools shut down, we were afraid of regression – and this was a justifiable fear it turns out. We’ve watched one child completely regress on all speech that he learned in the last year – took less than a month for it to all vanish and he’s completely non-verbal now.
So we’re locked in our house, barely going out. Not interacting with others. All because some people think it’s OK to yell at and make fun of them because they can’t wear a mask. Yes it may be “easy” or normal for them, or you,, but that doesn’t mean it is normal for everyone.
I got to admit, I kinda hate people right now. – But I still wouldn’t wish this on them.
While yes I think everyone who can, should wear a mask, the original post was merely asking for people to be considerate of others and realize that what they’re going through might not be what it’s like for you. I think a little consideration could go a long ways.
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