The Covid-19 pandemic has been brutal on the world. It’s been difficult for virtually everyone here in the United States. I think that people know the things that concern average people when it comes to Covid-19, but people on the autism spectrum can have a unique set of challenges related to the pandemic. Not that it’s easy for NT folk (Neuro-typical people, or those not on the spectrum), but we have many of the same challenges, along with myriads of other challenges that people might not think about. Before diving into the challenges that I’ve faced during this difficult time, I want to say that with autism, it can present itself in many ways. Thus, my thoughts about the pandemic could very easily be different than others on the spectrum.
Originally, I thought 2020, would be a good year as the end of 2019 had been very good for me. During Chinese New Year, my brother Dave came home to visit for a brief two weeks, and we all went to Disney World for vacation. Before I knew it, Dave had returned to Taiwan, and it was March. Enter— the novel corona virus.
Though I was aware of it, back when Dave was home, I would not have even expected it to come to the United States in my worst nightmares! In March, it did. My initial response to the lockdown that came was that it was temporary. It was passible when I thought after two weeks the virus would be gone, and we would get back to normal. In April, I discovered the lockdown would be around for a while. The lockdown remained in place until the end of May. Many people went without haircuts, had groceries delivered, and stayed home. Another rude awakening was when my county in Pennsylvania received its first covid case. After that they seemed to sky rocket. Not as bad as some places, but uncomfortably high in my humble opinion. Five cases seemed very high at the time. The virus is still around, and we will be entering year three in March. The cases in my county are higher than ever before—in the hundreds some days.
How have I dealt with this pandemic so far? Not particularly well. I have had a number of problems with it.
April, 2020, was an especially difficult month at the beginning. I felt trapped at home, since I couldn’t go anywhere. I enjoy going on drives. I had to put this on pause for a while. Of course, Covid-19 permeated the news. Besides information from Dr. Fauci and Dr. Birx, the amounts of cases and deaths caused by the virus were featured. The news pundits and reporters also talked about it spreading from person to person, thus we were supposed to practice social distancing. I pictured the virus as literally jumping from person to person! Every person potentially being a vector for the virus didn’t help. I’m not a particularly social person, but I minded having to stay away from the friends that I had. I was fearful of going outside the house. In this case I kind of pictured it as just being this monstrous thing in the air that would cause me and my family to get it.
I don’t have a concept of the population of the United States, even though I have read the numbers. When I hear about cases and deaths from the virus, it sets the “alarm” off in my head, and I get scared. The large number of cases made me feel that everyone was getting sick. Whether it was a person I knew, or a person I knew of, I was concerned. I couldn’t get this out of my head. When actually computing the math, I saw with my dad, that the percentage of the population who was infected with it at the time, was actually quite small.
As I would find out later, I had a good reason to be afraid of people I know getting the virus. As new variants came out, twice it seemed the world was caving in, as I heard about people, I knew getting the virus. Both waves were around Christmas time, once in 2020, and the other in 2021. During the second wave, extended family, and a long-time family friend contracted the virus. A classmate of mine is still in a medical facility recovering from it. I believe most people accept the virus, though nobody likes it. My question is, how am I supposed to accept the virus’s existence if it seems to be making people I know, sick? I’m not accepting it as far as I’m concerned, whether it makes sense or not. To be honest, I’m terrified of the Omicron variant. It may be less deadly and milder, but it’s super contagious, and when I hear of many people getting Covid, it really scares me! I’ve heard that “You will get Covid-19 at some point,” which certainly doesn’t endear it to me either. It does increase the anger I have for this virus and pandemic. I don’t consider myself an angry person normally, but this pandemic has certainly made me angry. I know from my priest that the virus isn’t the devil, but simply does what viruses do. Yet it feels like it’s either the devil himself (though I know better) or some major punishment of sorts, for something I must have done wrong.
Sometimes I blame myself for the pandemic. Why? Because the effects of the mitigation strategies have taken away much enjoyment from my life. I wonder what I have done wrong to deserve such a punishment. Instead of a sensible solution to limit exposure, I see strategies such as the lockdown, facemask usage, and the necessary closing down of my support group as punishments.
For an example, I am a consumer at FOCUS Behavioral Health. They help their clients work on goals that will enable them to become more independent, thus benefitting them in their adult lives. I did enjoy a few things about Focus. They (along with my parents) helped me with my autism support group. I also had a booth at their Autism Expo and Walk fundraiser that advertised my support group, that I enjoyed running. Additionally, I had a friend I met at my group, that I would hang out with sometimes. Not now. Not since before March 15th, 2020.
At first, Focus was only offered on Zoom (a telecommunication application). Finally, it was held in-person again, but all group activities stopped. Though I didn’t participate in their activities, it also meant that I couldn’t run my support group. Focus is still stripped down to being simply goal-oriented, no fun stuff. Since there’s no break from Covid, who knows when I can start up my group again! One expert declares that Covid might be getting better, and the next variant comes out just to prove them wrong.
How does this tie into being a punishment? Mentally, FOCUS can be difficult for me at times, though the company is only trying to help. I’m not a big fan of their activities (I tried two of them over the years). I also tried setting up my own game group which ultimately failed for me, although it continued to work for others. For these reasons, I felt like Covid took away everything related to FOCUS services other than the goals. As for taking drives (during the ban with the lockdown) it would be my love of going to get full-calorie sodas at the convenience store that was taken away. Facemasks prevented me from noticing people blowing up balloons in public, as well as receiving them at restaurants, such as Red Robin who stopped having them seemingly because of Covid. Speaking of balloons, no balloon giveaways at all now, because…. gasp…. they might give somebody Covid! I love to give and receive balloons.
Another bad feature of the pandemic is its length. With autism, negative things need a time limit. They need a cap. They can’t be open-ended, and provide good results. Of course, Covid is far from this. No ending date is known at this time, and even when people do seem to think it’s getting better, a new variant gets on stage, and it feels like we go back to square one, making it hard to bear.
I have OCD (obsessive compulsive disorder), and I also perseverate. I get negative things stuck in my head. I can’t forget about them, and they play over and over again in my head like a cassette tape. Covid-19 fits this category perfectly. The news helps fuel the constant reminder of the pandemic. The problem— my family is a “newsy” family. My parents have news on television or radio often. I tell myself that I can’t blame a person for wanting to stay informed. After all, we don’t live in the Stone Age, but the news is still a big problem. Just the idea that they might mention Covid gets me upset. I try to stay away from it as much as possible. I wish I could get back to a regular schedule that doesn’t have to revolve around avoiding the news, but if I hear some negative thing about Covid, my OCD goes off, and will affect me for hours. It’s like, there goes my chance for doing something I would enjoy for the rest of the night. Often instead I would perseverate about Covid-19 for a while.
Even if the mention of the pandemic doesn’t change anything, it’s still a reminder. For those who can’t handle the reminder, it’s tough. Even hearing the words “coronavirus,” “Covid-19,” and/or “pandemic” is brutal. I feel the same way about concepts and objects that have come into play because of the pandemic, such as: lockdowns, the new normal, a semblance of normal, social distancing, Zoom, and facemasks. Some of these aren’t anything new, but they became tainted because of the pandemic. Zoom-like products have been used by businesses before the pandemic due to convenience and expense. Masks were used in Taiwan way before the pandemic. I believe it’s part of their culture; it’s what they do when they’re sick, or if they want to avoid air pollution or dust particles. Since Dave lives there, I’ve been to Taiwan many times since 2012, and masks are a common sight there, but I can’t get used to them here. I really didn’t like them in Taiwan either, so I guess it’s understandable.
With the virus evolving, it’s also hard to know what is true about it and/or the pandemic. This in itself is also scary. I can’t hear information about Covid, and let it roll off me. I often can’t tell an opinion from a fact. I can’t tune out what is being said. There is a lot of misinformation and conflicting information. These are reasons why the news is so hard for me to hear. What to believe?
Vaccines are another part of Covid mitigation. They were the only thing mentioned on the news in 2020 that gave me hope. They were offered to general people in 2021, though at risk groups got first dibs. After receiving my vaccine, I felt a lot more secure. I wasn’t nearly as worried about getting the virus until Omicron, which changed everything. The thing about vaccines is that they’re designed to actually control the virus mostly by preventing severe infection. They also will lead the population towards herd immunity. At one time I thought that herd immunity would be the end of the pandemic, but I’m not even sure about that at this time. I do know they help and will help end the pandemic. Other strategies, though they help control the number of cases, seem like they would have to be used forever to be fully protective by themselves. Who wants to wear masks and distance themselves forever? Not me. I want the “old normal”!
I feel like Covid threatens my way of life. I can’t do the things I want to do very easily (some not at all, such as running my support group, and getting balloons at Red Robin.) I can’t visit with my brother in person. He lives in Taiwan. I’m afraid to go places with crowds of people. I can get uncomfortable easily when out if there are too many people, though I also don’t like everything being empty either. It doesn’t feel right to me. Another thing is that life doesn’t put itself on “pause” until Covid leaves. Anything lost or changed due to the pandemic is lost or changed because of the pandemic! Years of opportunity have been lost. It’s that simple, and not all days are created equal. Sorry to those who differ. Not. Not to be harsh, but when Covid attacks important holidays, woe to that virus.
Sometimes my feelings contradict themselves. Masks are generally ugly. They look like masks used in hospitals in the operating room. Some have cute designs on them though I can’t get into their look. Masks make me feel such as I’m living in an operating room at the hospital. It makes me think of surgery. They make it hard to breathe, and they remind me of Covid, but there are situations where I will voluntarily mask up, not because of necessity (policy), but because it makes me feel secure. Recently, around Christmas time, we needed to go to several Masses. The number of Mass offerings were limited. When I felt that there were a lot of non-family people around me, such as people sitting in the pew in front of me, I actually put my mask on in church though it wasn’t required. It made me feel more secure somehow. So, though I don’t particularly like them, I will wear them when I feel they are necessary. Another thing to note is that if I hear a person sneeze or cough in public, I cringe. My mind equates these normal behaviors with Covid-19, since they are both possible symptoms. By the way, if I have to cough, I get afraid that I could be developing the virus as well. Not so much after getting vaccinated, but very much so after Omicron took control.
Covid symptoms are another problem. It seems like most symptoms that an ill person can have, are also symptoms of the novel virus. This doesn’t make me feel very secure either. I get nervous when my allergies act up, or if I get a headache as they can be symptoms of the virus. Last October was a big test. A few days after returning from a Cruise that followed all Covid protocol at the time, I became infected with a nasty and strange virus. It had most of the common Covid-19 symptoms. The only ones it didn’t have were loss of taste or smell, and respiratory issues. I am very thankful I didn’t have the latter as I happen to have asthma. I was so nervous about my sickness that I used one of the extra Covid-19 test kits we had left over from the cruise. Fortunately, the test was negative. The virus didn’t get better, so I had to go to the doctor. Guess what? They made me take a Covid test as well. Fortunately, still negative. I thought it was creepy though, the way
the staff came out of the office in their Covid- garb and took me to a special separate section in the doctor’s office to see me. We even had to park, enter and exit in a special area.
As I found out later, another virus had also been circulating last fall. The other virus that I actually had was similar to Covid in many ways. It was miserable. I hate to think what mild Covid would be like.
Sprinkled around the pandemic were also a few things that provided temporary relief. At the very beginning (In April) when I was outside, I saw a yellow balloon that must have blown to our patio. It felt like a miracle as the likelihood of a balloon blowing over from a party to our patio didn’t seem likely. I also saw a woman blow up a balloon for a game in Ocean City when we went there during October, 2020 on the boardwalk. They simply didn’t last long enough. Once I was able to hang out with my friend from New Chester, it was helpful. In the summer of last year during the lull in the pandemic, I went to Hershey Park. I was able to go without a mask, and didn’t feel nervous with all the people there. It felt nice as long as I was there.
I started writing my blogs during the pandemic. The series of blogs I had written about my childhood mostly during last spring, made me feel better. They took me back to better times, and allowed me to not think about Covid for a little bit. The same is true when I have the chance to talk to Dave about our childhood. It has the same effect.
As a person can see, the pandemic has been hard for everyone. People on the autism spectrum might have extra challenges that others don’t. As a side note—writing this blog was extremely difficult for me, though it allowed me to write out many thoughts that have been swirling in my head (some for years!) Get this, due to freezing rain, on the one day I was editing this blog, my family needed to watch Mass on TV, which also brought me back to the time of church closures during the pandemic which was also difficult. I also felt like I was reliving the past events of the pandemic when writing this which was hard. I hope the blog will provide valuable information about the pandemic from another prospective!
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