Like many autistics, I have been drawn to science fiction as far back as I can remember. The idea of an epidemic infecting the human race has always been a common theme in science fiction and is probably as old as the genre itself. As such, I have seen and read more stories about pandemics than I could ever count. Still, I never expected to find myself living through the real thing. Yet this is what happened just a few months ago when the COVID-19 virus was first identified and found to spread very rapidly with a frighteningly high mortality rate. Not long after its discovery, the virus had spread to just about every country on earth and led to complete shutdowns of entire societies. By late March of 2020, New York City was under a lockdown where nonessential businesses and public venues were closed, and everyone encouraged not to leave their homes for anything other than necessities or travel for any reason besides essential work.
As a person on the autism spectrum, I had my own ways of dealing with this situation and with the uncertainty and anxiety that it could bring. One thing that I have done from the start of the crisis is to watch substantial amounts of news coverage about the pandemic. Although many a typical person would have been (and often was) distressed by this information (not to mention bored after a while), I found that the better my understanding of what was happening, the less anxiety I felt in the face of such scary circumstances. I later found out that this attitude was common in my local Aspie community.
Having a scientific background, I became interested in the virology, genomics, epidemiology, and medical aspects of COVID-19 and followed as much coverage of these as I could. In particular, the high viral reproduction number (R-zero, significantly greater than 2), in conjunction with its high mortality rate (on the order of 1%), gave me a good indication of the severity of this pandemic – it is basically a form of Russian Roulette with somewhat better odds. The fact that neither of these numbers is accurately known, and are only rough estimates, created even greater uncertainty.
The need to keep our healthcare system from being overwhelmed by more patients than it can handle gave me an appreciation of the need for lockdowns and personal protective equipment, especially after seeing coverage of the situation in Italy, and later Ecuador, where many died because they could not receive care due to limited medical resources. In our own society, these risks were exacerbated by the closing down of hospitals because their high numbers of empty beds made them be regarded as uneconomical. These were the reasons for “flattening the curve” (keeping cases requiring attention as few as possible). It was not just a matter of becoming infected, although that is certainly a concern, but of exceeding the capacity of our healthcare system, which would put all of us in great peril. This was truly frightening to me, and I understood what was meant by “we are all in this together.”
Also of value were discussions of policies implemented in response to the crisis, as well as historical retrospectives about previous pandemics ranging from the black death and bubonic plague in Europe, cholera epidemics of the 19th century, and the 1918 Spanish flu (along with a few lesser-known cases), all of which had uncanny similarities to the current situation in spite of the less-advanced scientific and medical knowledge available back then. Once again, this helped me put things more in perspective.
What Could All This Mean for Me?
From a medical standpoint, I was interested in the consequences of being infected by this virus. The majority of patients experience mild symptoms, or else have illnesses comparable to a nasty flu. Only a small fraction even require hospitalization, and only a fraction of those need intensive care (ventilators in the worst cases). Even then, many of those survive the ordeal. The mortality rate of around 1% was not as scary as it might have been because I had faced similar odds several years ago from the surgical risks of a prostate reduction. As to hospitalization, I prepared myself for such an eventuality. Should I develop any of the well-known symptoms, I would immediately call my primary care doctor to inform him of the situation, and, if necessary, get myself to the nearest emergency room, which is within walking distance. In extreme circumstances, I would call 911 and have an ambulance take me there.
A more likely possibility was that I would become sick and need to stay home for several days. I am actually well-prepared for this, because I always keep several weeks’ worth of nonperishable food, personal, and household items (I hate shopping for anything other than my special interests and do it as infrequently as possible). Because I live alone, this makes the prospect of being confined at home much more bearable, as I have nearly everything I need on the premises. A scarier possibility is that I develop a severe case, because I once had such a flu when I was about 30 years old, and I was so weak that I did not even feel like watching my favorite television programs. The thought of such an illness at twice that age is indeed worrisome.
As scary as the prospect of contracting the disease is, I am even more frightened by the societal effects of this pandemic. We have seen how easily supply chains are disrupted for essential items, ranging from hospital ventilators, masks, gowns, and swabs, to household paper products and disinfectants and more recently meat products. This is very disturbing when I realize that the use of “just in time” production with few storage inventories, a practice that was adopted for our economy with little controversy, in conjunction with the offshoring of most of our manufacturing (particularly of essential products), renders these supply chains vulnerable to severe disruption in the event of a rapid spike in demand (this has also happened for webcams and laptop computers with the dramatic increase in teleconferencing). Serious disruptions can also result should significant numbers of workers in the manufacturing or distribution of these products become infected with the virus. The result would be massive shortages of essential goods and the social turmoil that would follow. I dealt with this possibility by filling my stores of essential items to capacity. Given the small size of my studio apartment, refrigerator, and cabinets, this hardly qualifies as hoarding!
Even scarier is the disruption of such essential services as healthcare, police, and firefighting should large numbers of their providers become infected. This happened in my local post office, and mail deliveries were stalled for days at a time; fortunately, I do not receive any essential medications by mail-order, which would have created a serious situation for me. I sometimes have visions of society itself breaking down because of this and wonder if such fears are realistic or just the result of too much bad science fiction!
In addition to the above-mentioned benefits of staying informed, there have been some practical ones as well. Prior to the lockdown, I saw a news report that one NYC suburb had ordered barbershops and hair salons closed. I immediately went to the nearest barber and got my overly long hair cut. Fortunately, the shop was still open, and I asked for a shorter than usual trim. This turned out to be a good idea because the NYC lockdown happened shortly afterwards. Of far greater significance, however, was the discovery that, by the time many COVID-19 patients arrived at a hospital, their blood oxygen concentration was dangerously low, which necessitated putting them on ventilators and resulted in less favorable outcomes (including death) that might have been avoided had they been treated sooner. Upon learning that this can be measured by a consumer-grade pulse oximeter, available at most pharmacies, I visited several large drug stores, which were all sold out, until I found a local one that miraculously still had some in stock. Clearly, this was a good investment on my part.
How I Spent My COVID Vacation
Living under lockdown as we currently are is one of the few situations where being on the autism spectrum can actually be of help. I realized this when I learned that, in the general population, the single greatest source of anxiety resulting from the lockdown is the limitation on socializing with friends and relatives that it creates. As with most Aspies, my social life was never exactly prolific, so that this is not as great an issue for me or, as I soon found out, for many other Aspies in my community.
As with much of society, however, the most-affected autistics are those who live independently and have lost their income because they work in non-essential occupations. For them, stimulus payments and unemployment benefits (when they can get through to the agency), along with moratoriums on evictions for non-payment of rent, have been of paramount importance. Those who live with parents or family, or who receive disability or other benefits, have not fared as badly. As for me, I am more thankful than ever to be retired!
Finding myself primarily at home, I decided that the best use of my time was to take care of essential tasks that had been put off, such as cleaning my apartment, filing tax returns, sorting and purging personal records and other documents (I filled several large bags with shredded and recycled paper!), and updating my computers with the latest software and security (I have a few spares, and can now use any of them should my main machine break down – a necessity in these times). Taking care of such things not only kept me occupied, but also reduced anxieties about work that needed to be done. I strongly recommend this to other autistics who have any neglected or unfinished tasks pending, especially those living independently.
Having resolved not to touch them until essential tasks were finished, I also have plenty of special-interest paraphernalia to keep me occupied. This largely consists of old electronic and scientific equipment that I repair and restore (radio, audio, laboratory instruments, etc.), which I have done most of my life. As such, I have enough items to keep me busy for some time. I also have plenty of books, video lectures, and documentaries about my interests to keep me occupied for as long as is necessary.
Keeping the Community Connected
Ever since I was diagnosed on the autism spectrum almost 20 years ago, support groups have been a regular and consistent part of my life; I have attended, facilitated, and helped organize them during all this time. With the lockdown and banning of gatherings, however, the groups I participate in were not able to meet. Thanks to online teleconferencing, though, these groups have continued through the crisis and even thrived. In fact, some have had higher attendances than their in-person meetings ever did.
Aspies For Social Success (AFSS – www.nyautismcommunity.org, also on Facebook and Meetup), which has organized support and social groups for the past decade, now hosts weekly Zoom teleconferences (mostly on Wednesday evenings), facilitated by Steve Katz; these have shattered previous attendance records. Initially, we experimented with text-based meetings using software designed by two group members. Although AFSS decided to use Zoom, which provides any desired combination of video, audio, and text chat, for our teleconferences one of these members, Mona Pereth, has been hosting online text-chat groups for Queens, NY-based Aspies (http://autisticnyc.org/queens/). In New Jersey, long-time Aspie facilitator and NYC group member Daniel Szyper has been hosting his group, Central NJ Aspies 4 Social Success (www.meetup.com/NJ-Aspies-4-Social-Success/) every Sunday afternoon. Thanks to online technology, peer-run Aspie support groups, which for many autistics are a primary (sometimes the only) social connection, are alive and well and thriving more than ever. Additionally, AANE and Spectrum Services of NYC, which have provided, among their many offerings, free professionally-run adult support groups for many years, facilitated by Kate Cody, Psy.D., Pat Schissel, LMSW, and Dena Gassner, MSW, are continuing to host their monthly NYC adult and women’s groups on Zoom (www.aane.org/events). I have regularly been attending a number of these groups, and those who facilitate them are among the “front line workers” of our community to whom we should all be grateful.
These developments have made attending Aspie groups easier and more convenient for those who travel considerable distances. More significantly, many autistics have never learned to drive. For those who do not live in areas with good public transit, this has made groups accessible to many who previously could not get to them. Also, many of us in the Aspie community have long advocated for greater interaction among groups in different regions; once again, these technologies will make this more viable than ever.
Finally, many of us wonder what the world will be like after this pandemic has subsided, and the crisis ended. While this is impossible to predict, it is almost certain that the autism community will in some ways be affected by these changes. We can only hope that they will be for the better.
Karl may be contacted at firstname.lastname@example.org.