The COVID-19 pandemic has affected billions of people around the world physically, economically, and socially, including, of course, those on the spectrum and their families.
People with autism have a completely different perception of life, and this pandemic has impacted them in ways which most people aren’t able to understand or even be aware of. Anxiety levels are at an all-time high worldwide, but they are even higher within the autism community.
As the sister of a teenage boy on the spectrum, I can confirm this. “When are we going back to school?” is a question Gabriel, my brother, asks at least twice a day while we are quarantined. Our response of “We don’t know,” not only aggravates him but perplexes him.
It is beyond his understanding, just as it is beyond our control to give a definitive answer to his question. Not only is Gabriel anxious, but he is utterly confused; he’s angry at the situation and doesn’t know how to handle it properly. He’s stressed about having to stay home for an unknown period of time, he’s confused about what the virus really is and when it will end, and he’s upset he can’t go to school to see his friends, get dinner at a restaurant, or go to the park to ride his scooter.
I felt helpless, not being able to help him grasp the magnitude and intricacy of the issue at hand. My parents and I tried countless times to explain the situation and what we needed to do to help “flatten the curve,” but despite our efforts, Gabriel’s mind refused to accept the information.
His brain believes COVID-19 is something with a certain time limit; it began on a certain day, so it should end on a certain day. But no one knows when this outbreak will finally end, which is what confuses, angers, and triggers him on a daily basis. He is normally a very sweet, outgoing boy, but this whole situation has made him grumpy and frustrated.
Gabriel feels the need to blame someone for the unwanted situation, and being quarantined, it’s limited to either my parents or me, depending on the day. It’s almost like trying to sneak into the kitchen in the middle of the night—tip-toeing and moving slowly trying not to make any noise, because we knew if we did, he would wake up, and we didn’t want that.
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We try to make every conversation about him—every movie or show we watch, every song we listen to, every board game we play. It’s not healthy, but to us, it is what’s easiest. Of course, we want to talk about the stats at dinner time, or maybe about a movie trailer that looked good, but we always end up talking about Legos one way or another, all to engage with him and ensure he won’t “break.”
It is truly exhausting to have to act a certain way around Gabriel to protect ourselves from major chaos, especially since we don’t have any distractions outside of the house. Truthfully, though, my parents and I prefer surrendering to my brother than having him declare war on us, because we are in it together, just us, for an extended amount of time that keeps elongating itself.
I am sure every household in the world with a family member on the spectrum can relate to what my family and I have been going through. It’s not easy having to put him before ourselves, especially at a time where we all need to feel loved, safe, and calm. But in the end, that is why we did what we did, so we all, as a family, can remain as calm as possible during such a difficult time.
Easing back into reality is never easy, whether it is coming back from vacation, or in this case, coming out of quarantine. Most of us are getting used to not going out, snacking whenever we feel like it, and having no set schedule for meals and maybe even work! Because of how long we’ve been confined to our homes, getting back to your previous daily routine may take quite some time, especially for those with autism and their families.
As a family, we always try to make it as easy as possible for Gabriel to adjust back into his routine. In the past, something we’ve done to ease this transition is mentally prepare Gabriel. A couple of days before our vacation is over, we start reminding Gabriel our time off is coming to an end.
Hearing this several times before the vacation actually ends helps him mentally prepare for what is coming, so going back to reality is not a complete shock.
We also return from vacation one day prior to re-starting our routine. For example, if we took a week-long trip, we would most likely come back on a Saturday, so Gabriel has Sunday to relax at home before having to start up again. We found this to be really helpful after many failed attempts to return from vacation and resume normal life within forty-eight hours.
Although this usually means sacrificing one extra vacation day, this time, it means gaining a “vacation” day! Since we are already at home due to quarantine, once it’s time to go back to the real world, take the day before off and use it to decompress instead of doing chores and working. This may help the transition for many children with autism like it helps my brother.
Now, once you have gone back to normal life, there won’t be as much time to bond as there was during quarantine. The transition will be hard for everyone, especially those with autism. Try to be there for them in any way you can: listen to them, take them on a walk, play with them, watch a movie, bake some cookies.
Just be there for them because they need it and will appreciate it very much, even if they don’t ask for it or show their gratitude.
Another important thing we all need to do is to simply put ourselves into the shoes of those with autism. Imagine how hard it must be to live through this pandemic, not truly understanding what is happening, all while confined within your home without any human contact besides your family.
Try to be understanding. I’m not saying you should let them get away with whatever they want, but pick your battles. If they are kind of grumpy and don’t want to eat their vegetables, for example, should you really pick on them for it? Put it in perspective; they are already going through a lot, and so are you. Give them a break; give yourself a break.
Lastly, I want to conclude by saying positivity and optimism will get us through this. We are all in this together, and we will all have a hard time going back to normal after being secluded for so long. But know this: almost everyone in the world feels just like you do. You’re not alone! Make some time for yourself so you can also be there for your family member on the autism spectrum.
You need to be okay and put together, so he/she follows after you, and most importantly, you have to give off positive energy for him/her to feed off of, as well as lots and lots of love. This situation is not easy, but we must live one day at a time. We will get through this, and so will you.
This article was featured in Issue 104 –Transition Strategies For Kids With Autism