Thinking person's guide to autism

Autistic in the Pandemic: A Call to Action

Photo © Katie | Flickr / Creative Commons
[image:Black-and-white photo of a person wearing a hoodie and pants,
seen from behind near deciduous trees, reaching up and out to the sky.]

Maxfield Sparrow
unstrangemind.com
In the recent WWI movie, 1917, there’s a scene where the reluctant hero encounters a woman hiding behind enemy lines, trying to shush a starving baby. The baby isn’t hers so her body is not equipped to feed it. Lance Corporal Schofield had stopped to fill his empty canteen with milk—the only fluid he could find that was safe to drink—earlier that day. Although we know almost nothing about his life at that point in the film, his words and actions with the baby suggest that Schofield is a father, himself. He gives the milk to the woman and seems grateful to be able to do so.
There is a lesson here. None of us are as helpless as many of you may feel right now. We all have something seemingly trivial (or even looked down upon by mainstream society) that will be life-saving for others. I’ve seen a lot of Autists the last few days jesting about having spent their entire lives preparing for social distancing. I want to bring this out of the realm of jokes and validate it: being Autistic gives many of us certain advantages in these days of COVID-19 and it’s time to own that and talk about our possible roles in this historic time.
The jokes started around the similarities among social distancing, self-isolation, and social exclusion.

  • Social exclusion is something far too many of us are familiar with. I wrote about this topic a couple of years ago when I was reviewing the thin slice autism studies. So many of us spent our childhoods as outcasts. Many of us still feel that way most of the time when we’re outside Autistic space.
  • Self-isolation is a common response to abuse and trauma. I’m guessing most of us who have ever been in psychotherapy have talked about self-isolation with our therapists. While therapists are trained to encourage us to stop isolating and put ourselves out there, I have a personal hypothesis that we have to be ready to put ourselves out there and we have to have access to a community that will truly support us once we’re out there. Otherwise, self-isolation is a healthy response to an unhealthy world and shouldn’t be stripped away from us prematurely.
  • Social distancing is what many cities and towns all over the world are practicing right now to try to slow the spread of COVID-19 and lower the strain on our medical system. While the phrase has the word “social” in it, it goes beyond socializing. To socialize is to interact with other people in a friendly way, but social just means “of society,” So every interaction with another human is social, even if we aren’t socializing.

No matter how introverted a person is, no matter how much social exclusion they’ve experienced, no matter how much time they’ve spent self-isolating, none of us were truly ready for social distancing. I spend so much time closed away in my room that when I didn’t leave it for five days last month, during a fever, my housemates didn’t even realize I was sick. I’m a champion self-isolator, to the point that I’m now sarcastically saying, “oh, there’s a name for my lifestyle! Quarantine.” But I admit I’m having struggles just with the thought that I will run out of food in about a week to a week and a half, and have to go out into an uncertain world where people have touched everything in the grocery store and maybe won’t be willing to stay ten feet away from me, no matter how hard I am trying to stay ten feet away from them.
But even though saying we Autists have already spent our lives in quarantine is often an exaggeration, it is very true that we are more prepared, mentally than the average person. We have already developed our coping tools for loneliness and isolation. Many of us have been forced to become extremely emotionally self-sustaining after years of bullying or exclusion. Now is our time to shine! What I’d like you to consider doing: write a poem, letter, essay, paragraph, sentence, bullet list or record a video or audio statement or create a work of art or music or photography—in some way express yourself to others on this theme: how I have learned to take care of myself when I’m alone.
Some of you will create work that talks about how much happier you feel alone, how much safer. You will help others by teaching them to find the good in being alone, even if they are currently forced into it (just as many of us were forced into being alone when no one would eat lunch with us or when the only way they wanted to play during recess was to kick us instead of the ball.) You will teach them to think about social distancing in terms of safety more than deprivation.
Some of you will create work that talks about the desperation you have felt all your life at being unable to connect with other people. You will help others by letting them feel less alone. When they see their current feelings reflected in your life experiences they will understand that this situation might be totally novel for them but it is part of the full range of human experiences and they will paradoxically feel less lonely by realizing that they are not the only one who feels that way. Others have been feeling that way for a long time before this pandemic hit. Perhaps in their emotional solidarity, they will grow in understanding and work harder to include us in the future.
Some of you will be able to offer concrete methods you have used all your life to cope with social cruelty that left you alone and lonely. People will be able to try those methods, those actions, those ways of thinking and see if it helps them, too. Be patient with them – coping with being alone is a skill like any other. We have had more chances to practice it, just as people with majority neurotypes have had more chances than us to practice socialization. Now we are the experts and they are the ones who are deficient in a needed skill. We can help them and we can do it with more kindness and compassion than many of us experienced at the hands of “helping” professionals in the past. So many of us are experts at loving without touching.
There is another area where we tend to really shine yet are often judged or underestimated: many of us excel at collecting information, organizing it, remembering everything down to the smallest detail. I know it’s something I can’t help. My brain just collects data. This afternoon, a housemate needed a jump start. After reminding them of social distancing, I helped them get their car started and it felt really good to be able to help them. They asked if I were being so stringent about social distancing because I’m on testosterone and mentioned their transmasculine friends are extra concerned about the risk.
I was able to tell them that reports are indicating that more men are dying from COVID-19 than women, and that even the regular flu often hits men harder and more men die (our cultural jokes about “man flu” have been debunked by science) because of something about the immune response to these respiratory illnesses in a testosterone-based body compared to an estrogen-based body. This doesn’t put all testosterone-dominant bodies into an extra risk category, but maybe people in their first years of transition are right to take extra distancing precautions because being testosterone-dominant is still such a new experience that our bodies might not have adjusted well. The bottom line is that we don’t have solid scientific answers yet—we don’t have enough data on medical transition, we don’t have enough data on COVID-19, we just don’t know. There is so much we don’t know yet.
The point of this is not to stir fear in you if you live in a testosterone-dominant body, but rather to illustrate all the little details I was able to recall at the moment because my brain likes to collect and organize data that is important to me. I learned about the research into the “man flu” phenomenon a year or more ago and remembered it when I learned that COVID-19 has taken more men than women. If it weren’t for studies showing diminished resistance to regular flu, I would automatically assume more men have died from COVID-19 because of the social expectation that men will go out into the world and protect others, thus exposing them to the virus more. The bottom line is that we don’t have enough information so we have to protect everybody right now. I am very interested in science and medicine so those sorts of facts get added to my mental collection all the time.
You probably have something similar in your life, whether it’s history, rocks, details of your fandoms, herbs, engines, knitting stitches, or whatever. I’ve met Autists who knew the entire history of all the national grocery stores’ foundings and mergers. I know one person who can tell you what brand any toilet is without getting close enough to look at the mark on it. We tend to have niche interests and have them turned up to eleven. Many of us end up interested in how bodies work, the science of medicine, social engineering, statistics, and other topics that are helpful to know during a pandemic.
I’m guessing, if you’re glued to the scientific news right now, listening to the WHO’s daily broadcasts, maybe even creating algorithms and graphs like I am, you’ve had someone tell you you should stop. I am here to say: if you do not feel that it is having a negative impact on your mental health, keep going! I know I feel more grounded and calm when I allow my brain to do what it naturally wants to do. Graphing the daily death count might make someone else hysterical, but it helps me feel more in control because I know and can see what’s happening. It’s like the difference between being in a box and wondering what’s outside and being in a room with a window I can just look through to see what’s out there. Knowing as much as I can know helps me stay grounded.
If you are okay with learning as much as you can about what’s happening right now, don’t let others bully or discourage you from pursuing that drive. If you collect the information and are careful to consider your sources so that you’re only getting the most solid data possible, that is the milk in your canteen. You may eventually come across someone who, for example, really needs to know that scientists are arguing about whether ibuprofen is safe or not so they can make an informed choice about whether they will take ibuprofen or switch to a different medication if they can. And if you are a super-smeller like me, you can instantly know when social distancing has been violated: if you can smell their breath, they’re too close! (And yes, I can smell someone’s breath from five feet away.)
I want you to use all your self-soothing skills to stay calm because flattening the curve so that we can all save lives is not something we can do in two weeks. This is a marathon, not a sprint, so take care of your health and do whatever things work best for you to remain calm and grounded. You have an important role to play in protecting everyone. Communicate to the world and share your insights and skills with those less equipped to handle experiences similar to what we’ve lived with for years or decades. Collect the information your brain is hungry for and be ready to communicate it to others when they might need it (while remembering that anyone you talk to may be on the edge of panic, so be gentle with them and try not to “make them drink from the firehose” of an Autistic infodump—yes, I know, not easy. I’m a classic infodumper, myself).
We Autists have important skills and life experiences that can serve the rest of the world in this time of pandemic. We can help others without endangering ourselves and maybe some of the people we help will remember once this danger has passed: Autistic people are helpful and have deep understanding of things that non-autistic people need. Our society needs all kinds of people with all kinds of neurotypes. We can complement one another when we’re able to work together and respect each others’ differences.
Too often, people have shut us out of everyday life. Maybe learning how useful many of us can be in stressful times will help them be more understanding of us in the stressful world of ordinary life. If we offer them our canteen of milk now, perhaps we can all come out of this as better allies to one another.
Finally, if you can’t or don’t want to communicate through words, art, etc. and you aren’t doing well with hearing the science or news, don’t feel guilty or tell yourself you can’t do anything to help. Taking care of what you need is helping. Staying home or going for walks that maintain distance between you and others is helping. Doing the things that keep you happy and focused is helping. We are all in this together and whatever response you have to our collective need to protect ourselves and others is not wrong. Your emotions are not wrong. Whether you’re fearful, calm, or alternating between both, that’s valid. In a pandemic, every person who does nothing more than sit up in bed and watch Netflix all day is a hero. We can all be heroes, no matter who we are or what our status in life.
If you do nothing else during these times of social distancing, remind yourself that you are a hero, you are worthy to live and thrive, to love and be loved. You are valid, you matter. Please stay safe and remember that, so long as you aren’t out looting, taking care of yourself during a pandemic is an act of love for the world as much as for yourself. Taking care of yourself is taking care of everyone. From that perspective, even sitting in bed binging Netflix is an act of love. Even doing nothing can be the canteen of milk we offer our wounded world.Original Article

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