Spectrum Adults and COVID-19: A Primer

 

March 14, 2020 (Updated March 18, 2020, March 20, 2020, March 27, 2020)

 

Dear subscribers, especially fellow spectrumfolk…

 

In my email of March 7, I forwarded an article about coronavirus preparation specifically geared towards an autism audience. And while it addressed a lot of parent concerns, especially about transporting more challenged kids (from areas of infection—especially the home) who might struggle mightily with the transition, it didn’t really address the concerns of those spectrum folk who can better mirror greater society, and who might live in varying degrees of independence.

 

And it certainly didn’t address the many of us who economically struggle, and for whom Coronavirus might be a massive concern. Enough of you 20k wrote to make that evident, and I thank you.

 

One shorter disclaimer: I’m not sending you this because I think you’re getting a lot of false bad news. This is about how to process whatever we do know...in the healthiest manner possible.

 

***

 

For starters, none of us know how far this situation is going to go. None of our communities have been hit by the virus as hard as they will be, and I can’t think of a way in which any of us will not endure more anxiety than the already, relatively-higher levels of anxiety we spectrum folk are saddled with. It is very likely that we know someone who will pass as a result of the virus. There will be loss, and grieving in this once-in-a-generation event.

 

But we can mitigate the damage. And when we DO things to prevent further spread, and protect ourselves, our anxiety goes way down from where it would be if we froze (either in fear or indecision) and took no steps.

 

Before I get to where we are different herein, The imperative (neurotypical and spectrum) and basic acton steps are:

 

1. The hand-washing mantra is absolute truth.

 

Whenever you come into or enter a new environment from the one you were at earlier, wash your hands. And try to wash them as you leave as well. So if you have to go to work (although by March 20 I hope you don't), then wash your hands at home before leaving, and wash them when you enter work. Wash before you leave work later, and wash them when you come home. Wash them intermittently as well. How much? As often as you can without creating a noticeable decline in productivity that could get you fired down the road.

 

(Note: As of March 27, unless you work in an "essential" industry, such as food producton or delivery, health care...etc. hopefully you are NOT going to work unless remotely)

 

The virus’ main method of transport is through hand contact. If you go to the market with disinfecting wipes, wipe down the handles on your cart and whatever other surfaces get touched by the masses. But if you don’t have any such wipes (as they’re now hard to find), just, again, wash your hands as soon as you can after shopping/touching public surfaces, and then cleanse all surfaces that you touched in getting home (like car door handles and the steering wheel). Also try to reduce if not eliminate the contact your hands have with your face. Think of your hands as a transport system, because getting the virus on your hands is not a guarantee you will become infected. But then if your hands touch open areas of your body like eyes, nostrils, mouth…then the door is literally open to your becoming infected.

 

Many people are stressing about hand sanitizers like Purell having been bought up and that are now nowhere to be found (unless they’re being sold like black-market drugs for $80 a bottle on Amazon). But here’s the thing: Soap and water kills germs much better than sanitizer. So don’t stress the loss of Purell.

 

For the foreseeable future...No handshakes, and 6-foot distances between humans (you don't live wth) is now mandatory. Everyone understands, and if you find someone who actually doesn’t understand, explain the situation to them, or go Japanese on them and bow.

 

2. Understand the data and adapt your expectations:

 

To begin with, The 80% mild cases to 20% dangerous cases is not quite true. Well, it is, but the author of this statistic, Donald G. McNeil Jr., in a recent New York Times podcast, regretted how he put this stat forth to the American public. A “mild” case will still really put you out, for at least two weeks (and it may include pneumonia). And while you can still probably survive the 20% afflictions, you may emerge with damage to your lungs.

 

But know that everyone’s odds are still quite good. In the CDC’s WORST case scenario as of March 18, 1.7 million Americans would lose their lives, and that is a horrifying reality. But in a nation of 319 million it may allay some fears to know the odds. (fyi the full worst case is 200,000-1.7 million passing, with 160-214 million [admittedly, more than half of us] infected). This is, again, the WORST case scenario. And to press on hoping for the BEST case scenario—vast containment caused by decreased social contact—is a very healthy thing to do. As per usual, the answer will likely lie in the middle.

 

And while it is the elderly and those with weakened immune systems who are at the highest risk of passing, remember that there are plenty of healthy young people catching it and passing from increased exposure to others who are infected. (see #4). Youthful health care workers especially are passing. Children, thankfully, are at the least risk—not because they won't catch it, but because their immune systems are best qualifed to combat the virus.

 

Timing: Think long-term, not short. We're all hearing about NYC right now, but their worst period is expected to occur in late April-early May. Other cities are quickly joining the list of problem centers.

 

Also, we all don't want this to necessarily be over quickly. The more the damage is spread out over time, the more health care resources won't be past capacity. An area hit hard all at once will have to make life or death decisions based on available hospital beds, respirators...etc. Spread out, everyone has a better chance of getting the care they need.

 

3. Can’t find a mask either? Stop worrying.

 

Those cloth surgical masks actually do little to keep the virus from getting you. Yes, the virus can attach to air particles, but the chances of this compared to hand contact from surfaces or fellow humans, is small. What masks CAN help with is the spread of the virus if YOU’RE infected, as the mask would stop the particles of cough or sneezing from latching onto surfaces once they leave your body.

 

But if sick, hopefully you’re at home, or in a isolated ward, and not out and about. Please please stay put.

 

4. Reduce social contact and DEFINITELY avoid large gatherings.

 

O’Neil made a great observation that by March 14 he still played handball at his gym, but not basketball anymore. In handball he played with one person, he knows the person, and all they touch is the ball—and only after a point has been scored (as they play and hit the ball with racquets). But in pickup basketball games there are lots of people, including strangers, touching the same ball over and over again.

 

That said, I suspect that Mr. O'Neil is now (roughly a weeek later) done with his gym. But that detective-lke mode of thinking is still essential for all of us.

 

The cancellation of sports and arts events is a bummer as the distractions they provide us during times of anxiety would really help out. But it’s wonderful that they’ve done this. The numerous scenarios of how easy the pandemic could magnify under these incubator-like situations made the cancellations an easy call.

 

Stock up on foodstuffs that aren’t perishable (canned goods, frozen items…) in case your community really gets slammed by the Coronavirus, and you don’t want to visit the supermarket. Where I live (and where the virus has really not hit yet) it’s hard to find toilet paper and cleaners right now so maybe go sooner rather than later? Hoard? No. What you need for up to 6 weeks? Yes. The dirty looks you might get in the market from even just one full shopping cart are likely coming from people who are heeding Donald Trump's advice that "this is nothing." They are to be ignored. That said, however, please do NOT hoard perishable items like fresh vegetables. Then you really are stealing from others (including the heroic health care workers who need the vitamins to work the 19-hour shifts that are becoming the norm).

 

Walk the dog if you have one, and yourself if not, as a lack of fresh air is not ideal mentally or physically. But other than that, stay at home. Stay at home, stay at home.

 

Lastly, many idiots are pretending this isn't happening, and congregating or not practicing social distancing. Even more revolting? They think they're exhibiting character strength by doing so. If you know of anyone enjoying spring break (amongst thousands) in Florida or wherever, for instance? Don't let them escape criticism. Our only path, given the government's "pretend it isn't happening-save the economy" response, is self-reliance. We need to be the engines of a peer pressure not seen before in our lifetmes. So don't ever let them forget the danger they posed to you and your loved ones. They are the opposite of the toughness they assume they are demonstrating.

 

And remember that although confinement will be MUCH more complicated than I can describe here, social isolation and germ phobia is a skill some of us spectrumfolk ROCK at, so…(Ok, iffy joke).

 

***

 

Spectrumy (and non-spectrumy) stuff

 

1. Expect very little from authorities. Unlike other countries, we’re making up a plan as we go along. The great Andrew Solomon, author of the wonderful “Far From the Tree” and “Noonday Demons” came down with a temperature of 103 and was afraid he might have the virus. When he, a famous (and wonderful) person called health authorities to be tested for Coronavirus, they told him they wouldn’t test him unless he could prove that he had visited an infected country.

 

Andrew is a VERY well-known person wth resources. So what does that say about the chances for those who don’t have Andrew’s contacts? (p.s. Andrew specifically mentioned that aspect of relativism when he gave the permission for me to tell this story. Grazie, Andrew!).

 

This will likely continue to improve, but still...

 

Trump told us not to worry for a long time about the Coronavirus. Then he was in a reversal and proclaiming that the dlemma was all Obama’s fault, and that “I’m not responsible.” Now, against all experts' projections, he says we can go back to normal by Easter (April 12). Not so. He knows that his political future is dependent on the economy, and so is advising Americans to practice routines that, theoretically (albeit dramatically) could get everyone killed. Then again, Biden is using it as an excuse to go after Trump rather than heal the concerns of Americans. And the guy put in charge, Pence? Well, Pence believes that the AIDS virus was God’s will against sinful homosexuals. And everytime there's an announcement through the media, all of these characters are standing at the podium close together, and not practicing social dstancing. None of these clowns have earned your listening potential. You have every right to be a supporter of any of these folks, but in the interests of your ability to stay physically and emotionally healthy about COVID-19 I’m asking you to tune them out. Listen instead to local, non-politicized health officials—whether they can physically help or not—for information and advice.

 

I'll never forget being in NYC during 9/11. Immediately after, we had things to do, helping neighbors, getting the supply routes back, comforting loved ones, survivors...bonding. The rest of the country couldn't do anything like this. So what did they do? They watched the images of the planes going into the towers over and over again on their televisions. Dare I say it: It made them sick. We who endured 9/11 could heal through acts. Got lots of time on your hands? Volunteer! People are needed in many sectors to hit the phones!

 

Stay off CNN, FOX, MSNBC, local TV news...Honestly, that stuff is just not healthy, even when they're somewhat informative. Ugh. New York Times, the Economist, Washington Post...they're all you need (without the emotional manipulaton or dumbing down) and available when YOU need/want it online (with a TV you sit and watch until the info you need comes on). Btw, the Times' Coronavirus coverage is now free.

 

Honestly, though? All that said? Aside from providing a respirator for the more serious cases, there’s really not much anyone can do if you contract the disease. There’s no vaccine for it yet. . If we catch it, it’s going to run its course (and in the best cases, this is still going to take a minimum of two weeks). Be comfy. Come to terms with being at home and just call your doctor or local health authorities to inform them. They'll instruct you based on what they have the (regionally fluctuating) capacity to do—nothing more nothing less.

 

2. Really latch onto anxiety-reducing strategies.

 

Whatever you’ve used effectively in the past, use it more. Do MORE things at home that give you pleasure, not less. If you are fortunate enough to have a romantic partner(s) have MORE sex, not less (this includes have it WHEN anxious). Work out and watch your diet MORE—even if this is NOT pleasurable to you. It will keep you healthier and have the positive message to your psyche that you are doing something positive about this dilemma.

 

If you have kids, USE them as a means to calm you because you have to take care of them and they need the reassurance that life goes on (which it always does btw). If I have to home-school my 14 year old, I therein get to teach him all about the things I think his school is missing. Hello Tarkovsky movies!!!! (usually 4 hours long with little dialogue-teenagers love this [yes, that was poorly-conceived sarcasm]).

 

If living alone, NOW you get to binge-watch that Netflix series, or (if I had my way) wrote your life story, that great spin-off book series based on a Game of Thrones character, or a long essay about where people on the spectrum might find the COVID-19 coping strategies easier (I think of those of those of us with co-morbid diagnoses of OCD).

 

I'm starting to telephone people I haven't spoken to in ages. It feels great.

 

Or just look for the solace of beauty in movies, music, or books—One of my favorite novels of all time is quite relatable to us now, Gabriel Garcia Marquez’s “Love in the Time of Cholera” (it also has the greatest last line in the history of literature, but don’t cheat and skip ahead!).

 

To close this section, there's a great graphic making "the internet rounds" whose author I can only deduce calls themself "Blessedmanifesting." It reads as follows:

 

For You:

• Avoid excessive exposure to media coverage

• Connect through calls/text/internet

• Add extra time for daily stress relief

• Practice self-care

• Focus on your mental health

 

For kids:

• Reassure them that they're safe (though I would say as safe as can be)

• Let them talk about their worries

• Share your own coping skills

• Limit their news exposure

• Create a routine & structure

 

For quarantine/isolaton:

• Keep in contact with your loved ones via media, texts, and phone calls

• Create a daily self-care routine

• Keep yourself busy: games, books, movies

• Focus on new relaxation techniques 

 

3. When we don’t have a lot of money…and this is really big right now…

 

Pre-amble…No matter what your feelings are herein, this is written with the understanding that income discrepancy is now a talked-about issue in America. Already, a noticeable difference is emerging (thank you, CC) between college-educated professionals going home with employer support, and working people expected to risk their lives and stay on the job with no incentives or rewards, and under threat of firing should they dare take care of themselves and their families first.

 

When you are without quality health insurance, or have a job where there’s little or no sick pay, you quickly get used to going to work when you’re sick. In most situations like this, you are not being the stupid tough guy—you are the 78% of Americans who are a paycheck away from missing your rent. Despite this painful realty that homelessness is not far away—a reality that so few outside your circumstances seem to understand, please, please stay home anyway. It would be hard to forgive yourself if so many other people got infected because of you.

 

If you are not an essential worker (for example: the fast-food industry) and your boss is telling that it's ok to come to work, your boss is lying. If your boss tells you to come to work or else you're fired, your boss is a terrible human being and I suggest you start a campaign to make sure that, when all this is over, that everyone knows how your boss behaved. If you want to call your boss' lie to him/herself that their demands on you are justified? Tell them that you will come to work if they a) provide a written guarantee that they will pay all your medical bills if you get sick, b) that you will be exempt from any lawsuits brought on the company for having recklessly endanged the surrounding communities, and c) provide you with a six-figure life insurance policy (as your life is worth more than one years' salary).

 

Your boss may say they appreciate you, and that they are grateful to you. They aren't lying. But unless they agree to these three condions they will prove that they do not value you as a human being.

 

No, there’s no answer to your financial anxiety. Everyone SHOULD suffer financially during times like this. The recently announced initiatives by the US government to alleviate the suffering may apply to you, but they may not get enough information out to you showing you how to take advantage of whatever undetermined help is available. Most of the stimulus proposals applies to your boss’s disease-related business losses. Unlimited sick pay should be, but is not a part of this package, and a reduction in hospitalization costs to you should you contract the disease is also not necessarily a part of the package.

 

If staying at home, and it becomes an issue, I say refuse to pay your bills. It won’t be without consequence, and so this makes it really, perhaps-hypocritically easy for me personally to advise. But when you weigh the two sides of staying home versus going to work when sick with COVID-19, it’s a no-brainer: stay home. 

 

The also applies to a recommended two-week quarantine even if you only come in contact with someone who contracts the disease—That’s again, even if you feel fine. Please do isolate yourself for that two weeks. And if you are fine, this will also reduce your chances of contracting the disease for those two weeks.

 

The maximum of $1200 that you may get from this package will not come close to what your medical bills could be. 

I ask everyone else, those who have good insurance or good pay, that if you want such folks to not enact the most bitter, and ironic yet seamless (dare I say it) revenge for others standing by while their living situations continued to deteriorate…If you don’t want the threat of poor and infected people leaving their homes and risk exposing you or your loved ones—If you would instead ask them to stay home to indirectly protect you at the risk of their later homelessness…than I think it fair to ask you this: when the crisis is over, promise to fight (or give) with everything you have so that poor people never have to pay these bills.

 

Back now to the economically-challenged folks…Please stay home. You could also impact the good guys, including my kids (and thank you for letting me say that).

 

***

 

Loss (for all).

 

Some of us may see coronavirus as an affront to our entitlement; to our perceived right to long lives given the privilege that we, as Americans, enjoy when compared to so many other countries. But others may see this pandemic as nature’s way of protecting itself from a population growth that it simply cannot sustain. Doesn’t matter either way. Just love your loved ones more now. If someone you care deeply about becomes infected (and it will probably be a parent or grandparent), know that in most cases they will NOT want you nearby, at risk of catching what they have. They will be more content with a wave from a window, or a phone call, than you will be.

 

I take VERY good care of myself, but I have ten years on my wife, and I also have minor-league asthma, so in our house I’m the most likely candidate. I’m pretty sure that it would give me great solace to know that my family was safe.

 

A good friend works with very challenged kids with a local school here. These are the kids whose families live in shelters, cars, jail. Right before the schools shut down, one little 4th grade girl—who is always angry—came into school beaming with happiness. She told my friend that after a long absence she had seen her daddy. Upon further probing, my friend learned that the girl hadn’t really had that much contact with her father. Incarcerated, he’d had a court appearance, and she was allowed to be in the back of the courtroom. The fact that he had smiled at her, and waved, meant the world.

 

Peace, y’all; and be smart.

 

Yours,

 

mjc