To a Newly Diagnosed Autistic Teenager

I was recently asked by a 14-year-old who had just been diagnosed autistic what advice I had to give. This is what I said.

The thing that helped me most was understanding myself and talking to other autistic people, so you’re already well on that road.

The more you learn about yourself, the more you learn about how you *learn*… meaning that you can become better at teaching yourself to communicate with neurotypicals.

Remember though: The goal is to communicate. Blending in is secondary, or even irrelevant, depending on your priorities. If you can get your ideas from your brain to theirs, and understand what they’re saying, and live in the world peacefully without hurting anyone and without putting yourself in danger, then it does not matter how different you are or how differently you do things.

Autistic is not better and not worse than neurotypical; it’s simply different. Having a disability is a normal part of human life; it’s nothing to be proud of and nothing to be ashamed of. Disability doesn’t stop you from being talented or from becoming unusually skilled, especially with practice. Being different means that you see things from a different perspective, which means that as you grow and gain experience you will be able to provide solutions to problems that other people simply don’t see, to contribute skills that most people don’t have.

Learn to advocate for yourself. If you have an IEP, go to the meetings and ask questions about what help is available and what problems you have. When you are mistreated, go to someone you trust and ask for help; and if you can’t get help, protect yourself as best you can. Learn to stand up for yourself, to keep other people from taking advantage of you. Also learn to help other people stay safe.

Your best social connections now will be anyone who treats you with kindness. You can tell whether someone is kind by observing how they treat those they have power over when nobody, or nobody with much influence, is watching. You want people who are honest, or who only lie when they are trying to protect others’ feelings. Talk to these people; explain that you are not very good with social things and that you sometimes embarrass yourself or accidentally insult people, and that you would like them to tell you when you are doing something clumsy, offensive, confusing, or cringeworthy. Explain to these people that you would prefer to know about mistakes you are making, because if you are not told you will never be able to correct those mistakes.

Learn to apologize, and learn that an apology simply means, “I recognize I have made a mistake and shall work to correct it in the future.” An apology is not a sign of failure or an admission of inferiority. Sometimes an apology can even mean, “I have made a mistake that I could not control; if I had been able to control it, I would not have made the mistake.” Therefore, it is okay to apologize if you have simply made an honest mistake. The best apology includes an explanation of how you will fix your mistake or what you will change to keep it from happening in the future.

Learn not to apologize when you have done nothing wrong. Do not apologize for being different, for standing up for yourself or for other people, or for having an opinion others disagree with. You do not need to justify your existence. You should never give in to the pressure to say, “I am autistic, but that’s okay because I have this skill and that talent.” The correct statement is, “I am autistic, and that is okay.” You don’t need to do anything to be valuable. You just need to be human.

If someone uses you to fulfill their own desires but doesn’t give things back in return; if someone doesn’t care about your needs when you tell them; if someone can tell you are hurt and doesn’t care; then that is a person you cannot trust.

In general, you can expect your teen years to be harder than your young-adult years. As you grow and gain experience, you’ll gain skills and you’ll gather a library of techniques to help you navigate the social and sensory world, to help you deal with your emotions and with your relationships. You will never be perfect–but then, nobody is. What you’re aiming for is useful, functional skills, in whatever form they take, whether they are the typical way of doing things or not. As the saying goes: If it looks stupid but it works, it isn’t stupid.

Keep trying. Take good care of yourself. When you are tired, rest. Learn to push yourself to your limits, but not beyond; and learn where those limits are. When you are tired from something that would not tire a neurotypical, be unashamed about your need for down time. Learn to say “no” when you don’t want something, and learn to say “yes” when you want something but you are a little bit intimidated by it because it is new or complicated or unpredictable. Learn to accept failure and learn from it. Help others. Make your world better. Make your own way. Grow. Live.

You’ll be okay.

Obesity, COVID, and Statistical Observations

I have been watching some YouTube videos from doctors and scientists reviewing the latest research on COVID-19, and when they talk about the effect of comorbidities on disease severity and mortality in COVID-19, they often mention obesity. They do not seem entirely aware of the obesity rates in the US, and how they might affect the interpretation of studies done in the United States.

In the United States, 42.4% of all adults are obese (https://www.cdc.gov/obesity/index.html). Among a sample of people hospitalized for COVID in New York City, 41.7% were obese. These sorts of numbers are often cited as as a reason to think that obesity may be associated with more severe disease (requiring hospitalization), but notice the base rate: If people hospitalized for COVID have roughly the same level of obesity as people in general in the USA, then those numbers do not support the idea that obesity alone is a risk factor for severe disease in the US population.

This does not hold true for severe (morbid) obesity: The base rate for that is 9.2% in the USA, but the proportion of hospitalized COVID patients with severe obesity was 18%. (This was before controlling for comorbidities, which people with severe obesity usually have; the chicken-and-egg problem of whether they are fat because they are unhealthy, or unhealthy because they are fat, is something medicine is still working on.)

This implies that the number of obese, but not morbidly obese, people in the sample of those hospitalized for COVID should be 23.7%, compared to the 33.2% of mild-to-moderate obesity in the general population. If this difference is significant, as it should be with a sample of over five thousand, that actually supports the idea that obesity could be a protective factor, while morbid obesity is still a risk factor. (However: The paper did not address this idea, and I do not know if the difference is statistically significant; also, I do not have the obesity data for New York City and do not know if it is different from that of the general population.)

It might seem like a quirk of the data, but I think it is very important for us to notice, because if people in the overweight/obese range are worried about COVID and go on severe diets to try to lose weight and protect themselves, the low calorie intake may cause their bodies to slow their metabolisms, which it will do partly by reducing their immune response. People on severe diets may in fact become less resistant to the coronavirus because they are trying to lose weight.

A very gradual diet is probably still safe, but I have not studied what level of calorie restriction, in the absence of micronutrient deficiency, is likely to cause immunosuppression. Unless the goal of weight loss is to cure or better control some comorbidity that is associated with higher COVID death rates, it seems that until we know more, the best approach for many overweight and obese people is that of moderation and common sense: A varied, healthful diet without calorie restriction, combined with sunshine and exercise.

Reference:
Richardson S, Hirsch JS, Narasimhan M, et al. Presenting Characteristics, Comorbidities, and Outcomes Among 5700 Patients Hospitalized With COVID-19 in the New York City Area. JAMA. Published online April 22, 2020. doi:10.1001/jama.2020.6775

Uphill. Both ways. You kids got it easy.

I’m stranded at home, because I can’t go out. I can’t work. To survive, I fill out paperwork for the government, proving that I need food and shelter, constantly facing the default assumption that I am trying to cheat the system.

I look at the rest of the world, people who say they are going crazy because they can’t leave their homes, who are enraged and frustrated because they are having trouble with the unemployment office, because they’ve waited a week or two weeks to get benefits.

And I think: Well, now they know what it’s like. Because unlike the people who have been dealing with this for a month or two, this has been my reality for fifteen years now. I waited for six months for benefits. Many people wait two years. Driving is not possible for me, nor is public transportation readily available. The way people live in isolation now, short on money and housebound, is the way my life has been for over a decade.

I’m disabled, and that means I’m a second-class citizen. The world takes it for granted that I have to live like this. And, however much I wish I could wipe this virus from the face of the earth so it would never make anyone sad, scared, or lonely again, I find it vaguely satisfying to have people finally acknowledge that the way I have had to live is lonely, unjust, and frustrating.

Don’t get me wrong; I don’t hate my life, or even my disability. I find happiness and I’m satisfied. But there are annoying things in my life that nobody seems to recognize as annoying, that people seem to take for granted as being part of the experience of having a disability and thus unchangeable. But they are not unchangeable. They come from society being too inflexible to include us the way it should. When people are upset about the things I have had to deal with for years, that tells me that those things really are as unacceptable as I say they are, even if, normally, nobody seems to think so.

Worried about India

I live in the United States, where things are getting pretty bad. But I keep thinking about India.

When I was a college student, I had Indian classmates–international students. They were the ones you could always count on to do their part in a group project; they were the ones setting the curve. Once you got past their accents, they were just as nice and personable as anybody else. And they had a passion for learning. I guess it stands to reason that if you are willing to go to a whole different country to go to college, you would have to be somebody who really cares about learning.

Now I can’t stop thinking about them–the laughing fellow who could make magic with circuit diagrams, the tiny short girl who’s probably a top-notch medical resident by now judging by how well she could explain anything in anatomy. I graduated years ago, so they must be home now.

I keep hearing about how India has a shortage of doctors, India has a shortage of hospitals, India has huge areas where you have to travel for ages to get medical care. About how they’re crowded in the cities, and isolated in the countryside, and have so many languages that sometimes it’s hard for doctors to even communicate with patients. They love technology, they love science, but they’re just getting started putting it in place. There are lots of places where you can’t even get Internet.

And here I am, in the United States, looking at New York City on the news and seeing Mumbai or New Delhi, and I just… feel so helpless.

I know none of you can do anything about it, any more than I can, but you’re good listeners. So thanks for listening. And if any of you are in India, please take care of yourselves and stay healthy.

Masks 101

As you may know, the CDC recently recommended that, to slow the spread of coronavirus, people should wear masks–even cloth masks–when in public.

So here’s what you need to know.

Types of masks:

N95 respirators can protect you from breathing in the virus. They are only worn by hospital employees because they are scarce and need to go to the people who need them most.

Surgical masks will not protect you from breathing in the virus, but they will protect others from any virus that you may breathe out.

Cloth masks–homemade masks, bandanas, and other makeshift alternatives–also cannot protect you from breathing in the virus; but they will protect others around you nearly as well as a surgical mask can.

But I’m not sick. I don’t need to wear a mask.

This coronavirus plays a nasty trick: It will spread even if you don’t have symptoms. Some people, especially young, strong people, never have symptoms at all. Other people will spread the virus before they feel sick. Because we can’t know if we have the virus, it’s smart to wear a mask whether we feel sick or not. This is especially important if you are young and healthy: You are more likely to get the coronavirus without showing symptoms, but can still spread it to someone who is older or who has a a chronic illness.

I’m worried I’ll look silly.

The more people wear masks, the more normal it will become, and the more the people around you will decide to wear masks, too. If you don’t want to look clinical, make your mask out of bright colors; or use a bandana or scarf. Be confident–nobody questions somebody who looks like they know what they are doing!

When should I wear a mask?

Wear a mask anytime you go somewhere frequented by people outside your household.

Can I go outside without a mask?

Being outdoors without a mask is safe if you stay away from other people. In fact, spending time outdoors is very important–without sunshine, you can get Vitamin D deficiency, which can weaken your immune system.

Where do I get a mask?

If you can’t buy surgical masks, you can make your own. There are plenty of patterns on the Internet. Here are some patterns we are currently sewing to be used as backups for health-care workers: https://sewmasks4cincy.org/

If you can’t sew, contact someone who can. Wash home-made masks coming from another household before wearing them.

Mask Safety:

1. Don’t share masks with other people. One per person.

2. Know which side of your mask is the outside, and which is the inside. Never put the outside of the mask against your face. If your mask looks identical on both sides, mark it so you know which is which.

3. Wear the mask correctly. It needs to go over both your mouth and nose, and snugly fit your face so that you are breathing through it, not around it.

4. If using disposable masks, dispose of them after wearing them once. If you have a cloth mask or bandana, wash it in soap and hot water. Soap breaks apart the virus, killing it.

5. When you take off the mask, do so gently and without letting the outside of it make contact with your face. Don’t swing it around in the air; that could fling virus into your environment.

6. Masks don’t work as well if they get wet, either from your breath or from rain. If it’s wet, switch it out for a new one.

7. Don’t let wearing a mask make you overconfident. Your mask helps keep others safe, but you still need to wash your hands and keep your distance to protect yourself.

8. Tie your mask securely, so you aren’t reaching up to adjust it. Adjusting your mask means touching your face, and as you know, touching your face can transfer virus from your hands to your face. If you find you tend to mess with your mask, unlearn the habit before it gets established.

To those who can sew:

Please be willing to pitch in and help your neighbors. Don’t charge for the masks you make–nobody should have to go without one because they are choosing between that and their dinner. If you are low on cloth, request that people give you their pillowcases and sheets–100% cotton and tightly woven–for you to make into masks. Remember that any object you receive from another household must be washed before you work with it; so toss those sheets straight into the laundry. When you give a mask to someone else, put it into a ziplock bag, sanitize the outside of the bag, and instruct them to wash their mask when they receive it.

Where do you get your information?

This is information I have gathered from the WHO, CDC, and from medical doctors. Sew Masks 4 Cincy provides masks to hospitals, but acknowledges that home-made masks are inferior to manufactured ones and are to be used only in case of shortage.

Remember:

Protect your neighbors! Wear a mask!

How to Boost Your Immune System

There’s been a lot of really, really ridiculous pseudoscience on “boosting your immune system” out there. Some of it is harmless (Eat garlic! Take hot baths!) and some of it is potentially fatal (Fish-tank cleaner? Bleach? Rubbing alcohol? Seriously, people? Just don’t).

So as to combat this misinformation, I am posting here a list of things you can do–mostly enjoyable or at least not unpleasant–to boost your immune system. And they are all confirmed by actual, properly-designed studies, rather than by your eccentric aunt’s Facebook posts.

Sleep enough. If you’re not waking up before your alarm clock goes off, you probably aren’t sleeping enough.

Get a varied diet. That means carbs, fat, protein, plus fiber and micronutrients. Listen to your body–you often crave the sorts of things you most need. Multivitamins are useful to prevent malnutrition if you are eating a very restricted diet for whatever reason, but otherwise are unnecessary.

Spend time outdoors in the sunshine; if you are dark-skinned, consider Vitamin D supplements as well. Twenty minutes a day is fine. During the winter, even light-skinned people may want to take supplements.

This is not the time to go on a crash diet or overwork yourself (alas for our medical professionals and essential workers, who are doing exactly that and know exactly how dangerous it is, but can’t help it. We love you; we are rooting for you. Be brave).

Drink enough water–it helps keep your liver, kidneys, and digestive system happy.

Get some exercise, especially cardiovascular exercise. If you are new to it, take it slow. Don’t overdo it, whether you are starting out as an athlete or a couch potato. When your muscles are sore, let them rest. A walk outside is a good way to combine exercise and sunshine. The best sort of exercise is the sort you enjoy–Pokemon Go, anyone?

Alcohol is a bad idea in large quantities (one or two drinks is probably fine).

Consider stopping or reducing your smoking. Inhaling smoke, from whatever source, can paralyze the cilia in your lungs. (Okay, I said these were mostly going to be enjoyable or not unpleasant… here’s the inevitable exception. But you owe it to yourself to try. Besides, won’t you be so proud of yourself for stopping smoking if you manage it? It’s a seriously difficult thing to do, and an achievement that can be your own personal silver lining to the COVID epidemic.)

Consider the risks of pregnancy. If you are sexually active and pregnancy is a possibility, consider using condoms (or similar over-the-counter birth control), since pregnancy depresses the immune system somewhat to keep you/your partner from miscarrying (it also strengthens some aspects of the immune system to protect the fetus). If you are already pregnant, keep up with prenatal visits via telemedicine if at all possible.

Stay socially connected. I know they call it “social distancing”, but what it really is, is physical distancing. Your mind and heart need not keep six feet of distance. Also, pets can’t catch COVID–feel free to snuggle to your heart’s content. (If you and someone else are petting the same pet, be aware you could transfer germs that way, so wash the pet, wash your hands, or both.) You extreme introverts out there: Stay engaged with the minds of other people. Read, watch videos, write letters, listen to music, look at art. Your goal is to keep yourself connected into the web of human ideas.

[5/6 Update re. pets and COVID: First some big cats in a zoo, and then several domestic cats, have now tested positive and showed symptoms. The domestic cats were infected in an experimental context, but it implies that cats can catch the virus. What this changes is that if you have a cat in your household, your cat needs to be included in your social-distancing plans. Cats should stay inside and have contact only with household members. Since we would long ago have noticed if COVID could severely affect cats–or even easily infect them–it is highly likely that COVID is not a risk to cats unless they are already very frail or very young. But the small risk of your cat carrying the virus to someone else means that cats should be kept inside, and the precautions you take with household members should also apply to cats. Dogs are still questionable, but at this point, I would recommend including dogs as well–if only because, since dogs usually live with the family or in a fenced-in area, you don’t need to change very much other than not letting non-household members pet your dog. If your cat insists on going outside, consider a leash and harness.]

Set up a reliable schedule, with meaningful things to do. This helps fight anxiety and a sense of purposelessness, both of which contribute to the loss of morale that is associated (yes, scientifically), with a lowered immune response.

Do things you find engaging, interesting, and fun. Once again, feeling purposeless and anxious will stress you out. That’s right: I am literally prescribing video games, trashy novels, and guilty-pleasure TV shows as a preventative for COVID. Enjoy. And stay healthy!

Changes

I’m not too mobile at the best of times. Oh, sure, I can walk, no problem; but I can’t drive–and probably shouldn’t, since my reaction time and my ability to make decisions quickly are much impaired. (I have often thought that if there were nothing and nobody but me on the road, I should be a perfect driver. Alas, that is not the case.) So I’m limited to a few miles around where I live, and to wherever a friend or a taxi will drive me when I’m not in danger of wearing out my welcome or my funding.

American life takes driving for granted. People live so far away from their jobs that visiting home would have been, before the car, a yearly journey undertaken with much preparation. And like most disabled people living in a world of the temporarily-abled, I find that my need to have things closer, or to be allowed to do them at a distance, is considered an overly demanding request.

Enter the coronavirus. Suddenly, everything is wonderfully, blessedly accessible. The volunteer work I do now, I do from home. Nobody minds when I call instead of visiting. Even my food stamp interview this year is by phone. And the ADAPT meeting I had wanted to attend but knew I probably wouldn’t be able to attend (irony of ironies) due to my lack of easy commuting is now being held online.

It’s not just the commuting that has changed. Now, people are actually–for the most part, barring a few swaggering jackasses who think they can taunt a non-sapient virus–staying home when they’re sick, washing their hands, and not sharing water bottles and utensils. As I’ve mentioned before, I have asthma, and a cold can cause a flare-up, so I try to avoid them–something which, before coronavirus, got me branded a germophobe of the highest degree. Now that these behaviors are useful to the general, non-asthmatic public, they’re finally becoming the norm.

Isn’t that the way it always is? Disabled people can beg over and over for a simple accommodation. And we’re told, “No; that’s too much. No, that’s too difficult. We’d have to change things. We’d have to adjust everything. Be grateful for the curb cuts and the IEPs; aren’t we being saintly enough just tolerating your presence?”

And then, suddenly, non-disabled people find that something that disabled people are begging for is useful to them. They discover they don’t like climbing stairs; suddenly, elevators are everywhere. They like to watch TV with the sound off; now everything is closed-captioned. They want hands-free computing; voice recognition becomes a standard feature–not because disabled people desperately need it, but because non-disabled people find it useful to them.

I don’t want to disparage our allies. There are a good many decent people who think it’s ridiculous that some people are second-class citizens because we do things differently or lack some ability society has judged essential.

But society at large–both specific people and the culture we live in–seems to think that because something is not useful to most people, it must of necessity be an unreasonable demand to make. This is one of the foundations of ablism in our society, and needs to be directly addressed. If we want our communities to become truly good, they simply cannot leave anyone behind.

Quiet

It is March 27th of the Year of the Coronavirus, and we are holding on.

Upstairs, B puts her guinea pigs in their playpen and chops vegetables for them while they wheek impatiently. Her students wait on the other end of her laptop; she teaches them remotely. Last week, the fifth-graders were nervous and restless; this week, they have settled into new routines.

B and I go on walks in the sunshine when we can. I lecture about feline genetics. She talks about literature. I walk too fast, and get lost in our own neighborhood. She knows the way, from going jogging.

Downstairs, I make masks. Cincinnati isn’t yet in the full force of the storm, but we are worried our medical personnel will run out of personal protective equipment. We don’t know how much a homemade mask can do to help; there’s no science on it, just a lot of theories, some of which say, ominously, that they are worse than nothing.

But the CDC has recommended that if they run out of masks entirely, our health care workers can try using bandanas. Not if we can help it, they won’t. So we make mask covers, meant to go over a proper N95 mask, to extend its lifespan when they have to wear the same one day in and day out, as nurses are already doing in New York; and we make filter covers with a pocket for the hospital to put filter materials into; and we hope they will never be needed.

M is still going to work. He works for a construction company, and his boss at first said that he could work from home. But now M’s boss keeps sending him to work sites, into the customers’ homes. M is young and healthy; his boss is within ten years of retirement. “If he wants to catch the Boomer Remover, let him,” says M, cynical as always. Then he takes a load of thirty-one homemade masks to a nearby health clinic for me, and offers to let me dip into his pantry if my own supplies run out.

I’m reminded of Louisiana, after Hurricane Katrina. People help each other now as naturally as breathing; nothing else is conceivable. Greetings, from six feet away, are, “How are you holding up?”; and goodbyes are, “Stay healthy!” The social chaos of apocalypse has not come; our town is peaceful, quiet, and tense. It occurs to me that whenever I read about historical epidemics, there’s very little about what happens in the houses before the sickness comes, or to the ones where it never strikes at all.

This is what happens: We go on with our lives. M reminds himself not to touch his face as he drives down empty roads to another customer’s house. B and her children read a book about a 13-year-old Revolutionary War soldier. And I stay in my basement, making mask after mask after mask.

The Deification of Apocalypse

Do you remember when you were a little kid, and you were playing a game with your sibs, and you realized you couldn’t win? Perhaps, like many kids do, in a fit of pique, you swept your hands across the game board and pushed the pieces to the floor. After all, if the game stopped, you couldn’t lose.

I often see the same impulse in people of all ages. They are tired of losing the game; they wish it would end. They want to sweep the pieces to the floor.

There are a lot of stories about the world’s end, from Ragnarok to Revelations to the Walking Dead. People love these stories. After all, if it’s the end of the world, who has to worry about traffic or taxes? That nagging spouse, that annoying boss–they’re probably zombies by now. The meaninglessness of modern life evaporates in the firestorm of apocalypse. Everything is stripped to its bare essentials: Food, safety, shelter. Life is simple again.

So they dream of dramatically cocking a shotgun, smiling grimly down the barrel at a horde of zombies. They imagine themselves walking slowly away from an explosion. They want to live in a world where everything they do matters.

They imagine being the few righteous people left in a world where the sinners are tormented by the scrolls of Revelation, the few who saw it coming and kept themselves safe. They want to be the ones who recognized the zombies, understood the omens, saw the meteor coming. The ones who were right all along.

They wish for an apocalypse. Perhaps they even pray for an apocalypse.

They forget that their mental images of apocalypse come from books, movies, legends, theology augmented by fiery sermons and fictional dramatizations. These stories never seem to bother with the reality of daily life in the midst of a disaster. They don’t show the heart-clutching uncertainty, the gamble that doesn’t pay off, the trauma of having lost everything. They don’t show the sewage-tainted floodwater, the maggots on the rotting food in the abandoned grocery store, or the filthy, itchy skin that comes from never having a proper wash. They don’t include the hard, mindless work needed to simply survive. And they don’t include the hours, days, and weeks of paralyzing boredom, loneliness, and grief.

But I think maybe even knowing those drawbacks, some people would still wish for an apocalypse, a deus ex machina that sweeps away all the game pieces of their tedious, seemingly meaningless lives. They’re fed up. They feel like they can’t win the game; they want a change–any change. They feel small and useless, unable to affect the world. So they want to burn down the world and start again.

Well, I have a message for them.

Life is not meaningless.

You are not helpless.

You do not need an apocalypse.

Forget the rat race. Forget the world’s definition of success. Why are we so obsessed with keeping score, anyway? Is it really the case that to be happy, you have to be better off than other people? What is it you want?

Forget about changing the whole world. Forget about all the things you can’t change–the smarmy politicians, the money-grubbing corporations, the steady climate change.

Instead, focus on your own life. There are people around you, and you have the power to change their lives. You have the power to change your own small corner of the world. Keep your eyes open–look for places where you are needed, and fill those places. Maybe, in the grand scheme of things, the effects of your actions will fade into the distance…

But imagine what would happen if we all did this, if we all decided to exert what influence we did have.

There is power in numbers. Think about all those zombie movies you’ve seen. The zombies don’t have much of a mind; they don’t have much power on their own. But in big numbers, they end the world.

Well, how about, instead of ending the world, we decide to change it? How about instead of becoming an army of zombies that mindlessly bash doors and eat brains, we become an army of thinking, feeling creatures who are aware of the world around them, actively looking for opportunities to make a difference?

It has to start with someone. Really, it starts with everyone. Yes, the first few people who take up the job of changing the world will work alone, and it will seem like they aren’t having any effect. But then more people will join in, and more–an army of pure love.

They will no longer pray for an apocalypse, because they no longer need it.