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Saturday, February 29, 2020

G-Gpa

I got to thinking about my great-grandpa last night. He died when I was in boarding school; two days before I came home for summer break. But I grew up not far from where he lived, so I saw him often as a kid.

Before I was born, he sold cars. Then the Depression happened, and he took his wife and several children to a cabin on a lake to live off the land. They ate venison and berries and fish. There are black-and-white pictures of my grandpa and his brothers, holding up the morning's catch with the caption "breakfast!" I won't say they lived just fine out there--my grandpa's growth was stunted from malnutrition, and he and his brother both had heart troubles later on--but they survived it.

But that's all hearsay; stuff I remember from being told. What I remember, myself, is mostly G-Gpa's house.

It was a brick house, not large, with a pretty ordinary-sized lot. But where other yards in the neighborhood sported mown lawns and hedges, G-Gpa had raspberries and grapevines. He had fruit trees and a greenhouse. He had beehives and a big clump of pine trees in the back.

G-Gpa didn't really go to the store, except for ice cream. He lived off his land, and in the winters he went down to Baja California to fish. He caught big marlins bigger than his boat, fed pelicans, spotted breaching whales. He was featured in a magazine as the crazy old man who rowed his own boat and intended to row till he was one hundred.

His kitchen was where the adults gathered. It smelled like fish, and we would be served odd things like venison liver or giant salads with salmon in them. But after the gross adult food, he would bring out cardboard cartons of ice cream out of the deep freeze. He would hack straight through the carton with a machete, peel of the cardboard, and dump a slice of it in your bowl. Then pour over the sweet, tart raspberries and hand it over.

G-Gpa was hard of hearing, especially at high pitches, so we kids mostly didn't talk to him much. We'd let him comment on our height, admire his white hair and his big, bushy eyebrows, and then make ourselves scarce while the adults shouted back and forth. We didn't want to hang around in the fish-scented kitchen.

The upstairs was oppressively quiet, with heavy, dusty air. We always felt like we weren't supposed to be there, though no one had ever told us no. But still, we weren't about to touch the heavy chimes by the unused front door, or the knick-knacks in the dining room. The living room, we did have things would could play with: polished stones that my great-grandmother had polished, in a big box. You could stick your hands under the rocks and feel the weight of all of them. Or you could pick out your favorites and trade them. On the mantle were an ostrich egg and an inlaid tray decorated with blue butterfly wings. More things from G-Gpa's travels.

I don't remember my great-grandmother, though I am told I have met her. Her name was Dorathy, and she polished stones and bowled competitively. The stairwell was full of her trophies.

Downstairs was where the house got seriously weird. There was a wall by the furnace with all the great-grandchildren's heights measured, and a box of wood blocks you could build with. And beyond that, the main room, where the ping-pong table was. There must have been about thirty big sets of antlers, with names and dates of the people who had shot the deer, and styrofoam cubes stuck on the tips so that you wouldn't gash your head on them while playing ping-pong. Apparently that had to happen a few times before the styrofoam was added.

There were glass shelves full of fish skeletons and birds' talons. A big pufferfish skeleton hung from the ceiling, forever inflated. In a chair, there was a fox pelt; you could put it on and terrorize the cousins with it. It smelled old and musty.

A folding screen separated out an area where a cousin slept; later it was a different cousin in the same spot. G-Gpa's house was a place you could live if you needed a place. On the screen were pinned birds' wings, dozens of them in different sizes and colors. It was like a natural history museum, only with ping-pong. I was awed by it, wondering how many places G-Gpa had had to go to find these things.

G-Gpa sometimes took us around the yard to show us different things he was working on. He showed me a spinach leaf for the first time, and I remember being amazed because it looked so different from the dark, shriveled stuff that came out of our freezer. Sometimes he sent us home with big boxes of food: tomatoes, corn, honey, and milk jugs of grain. For a family that was used to ramen noodles with frozen spinach, those boxes were like Christmas.

Our family reunions every Fourth of July were partly to celebrate his birthday, which fell near then. I remember him wearing his Uncle Ernest's bathing suit, an old-timey singlet in red, white, and blue, ready to start the festivities by jumping in the lake. Someone from the shore shouts, "Wait, did he take his hearing aid out?" His son, my Grampy, shouts back, "Yep, he can't hear a thing!" G-Gpa jumps into the frigid glacier water, and I jump in after. Nobody else comes in, and G-Gpa shouts affectionately, "My little swimmer!"

One of the last times I saw him, we were at a park where he did his daily swim. He already had cancer then, but he explained that he still swam five miles a day in Lake Washington, regardless of the weather. His body was like a wiry piece of leather, scraped almost clean of flesh but still strong. I felt like he would never die, not G-Gpa.

At his wake, we all laughed and talked and played games. It seemed right, because G-Gpa wasn't a somber man. And after all, he'd lived past eighty and seen his children's children's children. No tragedy, not really.

But sometimes I wish I could take my kids to the old brick house, show them the smooth pebbles and the birds' wings and the old man with the red face and the bushy white eyebrows, and I can't. And I think, maybe it was a tragedy after all. Every death takes something out of the world that can't ever be put back. I like to think his spirit was distributed among his descendants, that I got some of the gardening and the cold-water swimming and the deep desire to support myself without going to the store. And maybe we got fragments. But the greater part of his spirit, the man himself, is gone and I still miss him after all this time.

Sunday, February 23, 2020

The hardest part

I hear a lot about how hard it is to be an "autism parent." And it's not wrong; parenting a child with autism is playing on hard level. There are extra things to worry about and appointments to make. Potty training may take years. Sleep might be disturbed for a decade.

But the hardest part of all, I think, is the judgment of other people. Autism looks a lot like bad behavior, especially to an older generation that prizes politeness. Autistic children scream, cry, fail to sit still, won't say please and thank you, or don't play well with other kids. And so bystanders tend to look on and say, "That child is a bad child, where are his parents? Somebody should try raising that kid."

It's easy enough to shake off from strangers. But the same comes from friends or family. If I vent about some difficulty I've had, there's always somebody ready with the standard parenting advice: have you tried punishment? Have you tried boundaries? Have you tried, you know, actually raising your kid? Because from what you're saying about their behavior, it looks like you don't know what you're doing.

I went through all of this with Marko, and because I didn't have a diagnosis for so long, I often just censored myself altogether. Better not to even say how he was acting or what we were struggling with, because I knew people would blame me. In public, I was ready to defend him at all times, because people constantly tried to talk to him and would get miffed when he didn't respond. I knew that I acted differently from other parents. I knew that not all parents went to such huge lengths to keep their children happy. And I knew that I would get judgment for behaving that way.

When we were having the autism assessment, everyone was so kind. I asked many times, in worried tones, whether it was my fault. Had I been spoiling him by not subjecting him to environments that upset him? Had I hindered his education by not pushing harder at writing and reading? And they were so reassuring. They said that I had clearly sensed what kind of parenting he needed and provided it. That he was doing really well and the reason was probably me and my above-and-beyond parenting. I could have cried. All those years of bending over backward for him, being sure I was screwing him up because everyone seemed to think so, and being told it wasn't me. That I had been doing things right all along.

It's on my mind a lot because the same dynamic is happening with Jackie. I don't know yet if she has autism or anything you could diagnose. Maybe not, because as I've mentioned, autism is diagnosed mostly as a social deficit and Jackie is plenty communicative with us at least. But I do know she's not like other kids. I know that something is up, and if there's no name for it, that changes nothing about what she needs.

She needs about three times the bending over backward that Marko did. Everything in my entire day is controlled by Jackie, what she will tolerate and what she won't. I can't wear a sweater in her presence. A shower requires significant advance planning. Leaving the house may require half an hour of preparation and outfit changes and toy collecting, and even then she might need to be packed in screaming. I'm trying to wean her right now and it's so hard. She just gets upset by so many things, and there are so few that calm her down.

Yesterday I went with her to a party, and like every time I try to socialize with her around, she didn't like it much. She climbed on my head, flipped upside down, made dozens of ridiculous and contradictory demands. By the last hour she just asked to leave, over and over.

It was embarrassing, seeing her act like that while, in the same room, another three-year-old was completely entertaining himself. And knowing that many of the other adults have high standards for kids, and maybe were thinking Jackie was spoiled, that it was my fault, that kids shouldn't be so needy. Nobody said anything, this time, but it was hard to avoid that feeling of judgment.

Even my other kids sometimes say I let her get away with too much, let her have too much of what she wants. All I can say is that I've tried it before and her behavior gets ten million times worse.

Online, occasionally I vent about what a challenge she is. How much I would like to be able to just attend a school meeting or throw in a load of laundry without having to work out how to get Jackie to handle it. How tired I am of nursing her, three years in, or how much I want to sleep through the night before I'm old. Most people, to their credit, empathize. But every once in awhile someone does judge and it hurts so much. They'll say: well, with my child, I try saying no to them. Or: you're the mom, if you are tired of nursing just stop. Or: at her age she can handle not getting what she wants.

It tears me down so much, every time I hear this. Because the undercurrent is that it's my fault. That I took a normal child and spoiled her to the point that she cannot handle existing in this world. It's an awful thing to feel, and it takes hold so much because it hits a tender patch of self-doubt inside me. Because I do worry it's me. I do worry I've spoiled her. I do worry that if somehow I had been better, she could get up in the morning and go down and eat breakfast without having a wailing meltdown because I wanted to drink a cup of tea. Heck, even if it is purely her brain, maybe it's still somehow my fault because I was such a mental-health wreck while I was pregnant with her. Or if it's genetics, isn't it then my fault for getting pregnant again?

I took her to her three-year-appointment this week. I dreaded it for weeks ahead of time. What if I was honest about our struggles and the doctor said, try actually parenting her? What if I tried to explain and the doctor brushed me off and said all toddlers have meltdowns sometimes? Maybe I should just keep all that to myself and pretend she's potty-trained and weaned and sleeping through the night.

In the end, I chose to be honest. I already had Jackie thrashing in my arms and demanding to leave the room; how could I pretend I had no concerns? And the doctor was extremely kind. She said it sounded like I was doing all the right things. She said if I have concerns, it's worth it to get an assessment. She gave me a referral to an occupational therapist, saying it sounds like I need help now and not months from now when we finally get in with the psychologist.

I could have cried. After all the judgment I've had, the surprise from people when they see how she acts, and the well-meaning "well did you try . . . " comments, there is nothing in the whole world that means so much as "it sounds like you're doing all the right things."

Because when it comes down to it, the judgment is the hardest part of the whole business. Not that I can't go to social events; not that I don't get sleep at night; not the occasional days where she cries the whole time. It's the fear that I caused it, and the judgment I get from people who assume I did. Other parents get to vent about their kids, so long as everyone's kids are doing more or less the same stuff. And if your child is extra hard, you need the support of other people all the more! But if your child falls outside the norm for whatever reason, it's hard to find safe people to vent to.

Listen to a special-needs mom today, without offering any advice. It'll mean the world.

Saturday, February 15, 2020

Libertarianism, socialism, and whatever the heck this is

I'm not a libertarian any more. I was never that hardcore of one, in that I stuck with libertarian policies mainly because I found them practical. Further research has revealed that some of them aren't that practical, so I abandoned them. Libertarianism doesn't reliably care for the poor, protect the environment, or prevent massive corporations from taking advantage of ordinary people. That stuff is important enough to be a dealbreaker.

But of course, when you suggest that complete anarcho-capitalism isn't ideal, people demand to know whether you're a socialist. Trouble is, socialism seems to have shifting definitions. Is the gold standard for socialism the USSR, or Norway, or maybe Venezuela? If you propose a single change, like universal healthcare, you're told that's socialist. But that one policy certainly doesn't make a country equivalent to China or Cuba. There are a lot of stops on a scale from pure anarchy to pure communism - both of which, proponents will tell you, have never actually existed in real life, not on a large scale.

And one of those stops is the US. The US is not libertarian or purely capitalist. We have socialized education, socialized libraries, and a socialized retirement program. The government manages labor laws, breaks up monopolies, and injects cash into the economy to stave off recessions. Whether it's successful at any of those is always a matter for debate.

I read a book some years ago about North Korea. The North Korean defectors spotlighted in the book knew their communist system had flaws, but they were sure it was better than the alternative, which they imagined was something out of a Dickens novel. Child labor, grinding poverty with no aid available, no free schools, no affording a doctor if you're poor. What convinced them communism wasn't actually the best option was learning Western nations had modified their capitalist systems so they weren't like that anymore.

Which of course is exactly what happened. America isn't purely capitalist because we tried that and it was bad, so we established some safety nets and that was better. Capitalism isn't ruined just because there's an income tax or some food stamps.

So how much government intervention do you have to have before it's socialism? Frankly, I don't know and don't care; that's a question on the order of "is taxation theft," namely, arguing about definitions rather than realities. The real question is, how much management of the economy, in the form of graduated tax brackets and social programs, would it take to remove the advantages of having a free economy?

The advantages of a free economy include flexibility (there are lots of kinds of jobs and products, new products can arise all the time, prices are responsive to demand) and the ability to affect your own situation by working. Decentralizing decision-making means one person making a stupid decision won't cause an entire industry to go under. Income tax doesn't change these things significantly, not unless it's many times higher than what we have. Some socialist policies do threaten them. For instance, subsidizing anything risks increasing its price uncontrollably- since people aren't paying directly, they won't stop purchasing even if the price gets exorbitant (see: higher education, houses, healthcare*).

[*though with healthcare, since we need it to live, it's never going to be perfectly price-controlled by demand.]

So we just have to be careful with it. The main thing I learned when I was studying the food system is that there are no simple solutions. Some horrible situations (like, for instance, e. coli in meat, or small farms going under) are caused by too little regulation, others by too much. Sometimes it's just the wrong regulation, either because lobbyists got through something to protect their interests, or because people didn't think through the consequences of their actions. So, whether we're adding regulations or taking them away, we have to be smart about it. That's a lot more important than whether something is "socialist" or not. We also have to consider who the policy will benefit: the ones in our society who need it most, or the ones who are doing fine and will continue to?

My current favorite candidate is Elizabeth Warren. She is concerned with helping those who need it most, and just as important, she's run the numbers and actually has a plan for everything. She's practical, and I like that.

Don't get me wrong, though, I'd vote for a hole in the ground before I'd vote for the incumbent.

Friday, January 31, 2020

The last decade, and a word

It's the thing, apparently, to have a decade flashback. Where were you a decade ago, and where are you now?

A decade ago was honestly a low point for me. I was pregnant with Marko, living in Philadelphia. More specifically, a cruddy little duplex in Hatboro. Tiny living room, tiny kitchen, bedroom barely big enough for a mattress on the floor, and every night we could hear our neighbors screaming at each other and throwing things.

We worked opposite shifts from each other, me at school and him at the bank, so we only got a whole day to spend together on federal holidays. Our first year of marriage was mostly eating dinner on the couch, too tired to talk much. Between our two paychecks we were doing all right, except for the fact that I knew I'd have to quit and then there would be only one paycheck. We had no real friends. I liked my coworkers but work was an hour from home so we couldn't hang out socially. And I hadn't really hit it off with the rest of the people in choir yet.

I wrote a whole blog post post about how this must be part of some better plan. And you know what? It wasn't. Moving to Philly was probably a mistake and that entire year ended up being just a holding pattern till we managed to leave.

But that's kind of okay, in retrospect. Because I never have to do that year again. It's 2020 and I have a big house, a schedule I can handle, and enough money to order a pizza now and then. It's pretty nice!

Now, my life is still overwhelming and hard in a lot of ways. Different ways. At least there's less time in the car. And I'm not pregnant! Not being pregnant is the BEST. Last night I slept on my hip funny and woke up with it hurting at five am so I went back to sleep. When I woke up it was fine. Amazing. That doesn't happen when I'm pregnant!

Still, I struggled to come up with a word or resolution for the year. I still believe in my goals for past years and am still trying to achieve them. But all the things I most want to happen this year, none is entirely under my control:

-wean Jackie
-potty train Jackie
-get Jackie to sleep through the night
-be able to accomplish more in a day
-get a literary agent
-finish 1-2 novels
-Donald Trump gets voted out

These are all things I want, things I'm motivated to get, and things I have plans to achieve. But all of them are subject to the cooperation of others. I'm doing pretty well about writing in the available time, but the available time has shrunk to an hour or less in the evenings because Jackie literally demands my attention all the rest of the time. I'm putting my work out there, but publishing, as the agents who reject me keep reassuring me, is a subjective industry.

It's been years that I've tried to pull myself up to a basic level of functioning. Years that I've hoped and tried and planned and schemed to get full nights of sleep, sort the laundry before anybody was out of pants, make appointments when I first think of it rather than after months of forgetting, get more exercise than carrying Jackie up and down the stairs. And it hasn't happened, or not for more than a week or two before we all get the stomach flu and my head's shoved back under water.

It would be really tempting to just give up and let it happen. Just put my laptop inside a drawer, as I've had to before, and say this is not my year or my decade. To move from frustration to despair and stop believing that things will eventually get better.

And that's when my word came to me, as it always does: HOPE. I'm not going to do a blessed thing any differently. I'm just going to choose not to give up hope. I hope Jackie sleeps through the night. I hope I get an agent. I hope I'm able to finish this beautiful novel I'm writing, which I'm so in love with.

There's the old experiment with animals, where you put them in cages they couldn't possibly get out of, and eventually they stop trying to get out of even flimsy cages. Learned helplessness is what it's called. And that's what I reject. I reject the idea that because I haven't had much success with things in the past, I never will. I reject defeat and hopelessness. I choose to keep trying because sooner or later, things will get easier, and I don't want it to find me sitting on my butt with no ideas and no craft supplies. I'm pushing a rock up a mountain and it's basically going nowhere, but if I've got my shoulder to it, sooner or later I'll notice that it's starting to pick up a little speed.

That's what I hope, for 2020.

Friday, December 6, 2019

Does God love women?

I got into a conversation about this question the other day, and it reminded me what a big problem it was for me years ago. If God loves men and women equally, why did he create a world where we are so unequal?

I started out with church teachings. Why all the obey your husband stuff when it's led to and covered up so much abuse? Why did the church declare it a sin to deny sex to a spouse about a thousand years before it bothered to mention you need consent for sex within marriage? Why did church teaching, when it mentioned women at all, bind up more burdens instead of addressing our particular vulnerabilities and enjoining men to respect us? Was God not aware that men would oppress and abuse us?

I could go for the low-hanging fruit: the permission of sex slavery in the Old Testament, the burdensome menstrual laws, stuff like that. But I don't think I even have to. I can admit there were moments when the Bible goes beyond the culture where women's rights go: forbidding men from divorcing their wives, blaming lust on men's eyes instead of women's clothes, Jesus having female disciples. But is it really enough, given how oppressed women were? For centuries of Christianity, women were not given a choice about who they married or much of anything afterward. They spent most of their time pregnant and very often died before their time in childbirth. Millions of women throughout history have been killed by their husbands, and until the last few decades, they had no legal remedy to escape a violent man. I think if God had a problem with any of this, he should have said something. He could have demanded women be treated as equals, in explicit terms; or put women in some kind of leadership role in the church so they could have said something.

But all of this is almost a side note. This is stuff the Christian God did and failed to do, contributing to the oppression of women. But people might rightly object: Women were oppressed before Christianity, in almost every* culture in the world. So why blame Christianity?

[*There's some evidence Paleolithic women weren't oppressed, but we can't really be sure. If you focus on recorded societies, the majority have been patriarchal.]

This isn't really an excuse for the Christian God, or any god for that matter. After all, God created the world, right? So we have to ask what, in the conditions of the world, makes women oppressed. Is God responsible for any of that?

Well, women are physically weaker on average, that's one thing. We get pregnant, for another: being pregnant or nursing makes us vulnerable. Then there are the psychological differences between men and women. I keep batting back and forth about how real those are, but I think it's fair to say that there's at least some kind of average difference: men tend to be more aggressive, for one thing. They commit by far the majority of violent crimes. Culture surely plays into this, by telling men what is expected of them, but I think testosterone does play a role as well, in increasing anger and aggressive tendencies.

If I were making a planet, I definitely wouldn't give half the people a physical advantage and then give that same half more anger and tendency to dominate. I'd either make everyone as equal as I could, or I'd make the stronger ones the biggest natural altruists.

Even today, violence against women is an ongoing problem. An estimated 35% of women have experienced physical or sexual violence, half of them by someone known to them. 137 women are murdered by a member of their own family around the world every day. 72% of human trafficking victims are women and girls.

Okay, so what if we ruled out all effects of the patriarchy? While I can't hold God blameless for making us vulnerable to it, it is of course mostly the fault of human action. If all men shaped up their behavior overnight, would life be fair for women?

No. No it wouldn't. We have periods, of course, which aren't evolutionarily necessary (most animals don't have them) and which are unpleasant in the most ideal scenario. On top of that, many of us have severe cramping or mood disorders related to our periods. Between 10 and 20 percent of women have endometriosis, where endometrial tissue grows outside the uterus. It causes extreme levels of pain every month. There are some treatments but no cure.

Pregnancy causes further problems: some of us are lucky and suffer only "minor" annoyances like feeling nauseated for three months solid, heartburn, hemorrhoids, dislocated pelvic bones, and so on. Others get nightmarish problems like hyperemesis gravidarum, where one vomits so much it becomes dangerous. A Facebook friend of mine is right now, thanks to medication, able to keep down about 300 calories a day and fluids. That is as good as modern medicine can do for her. Often women with hyperemesis suffer tooth and esophageal damage from all the vomiting.

Then of course there's pain in childbirth, which no treatment can completely take away. My labors have been brief and uncomplicated, but it's still the worst pain I've ever felt, for hours. After birth, pain and disability continues during a recovery period when we're also expected to care for a newborn.

In short: life for women on this planet is worse. The writers of Genesis knew that, hence the story of how it's all a punishment for Eve's sin. Both domination by men and physical suffering are mentioned. It's not unfair, they tell us, because Eve did eat that apple first.

How is it fair to distribute punishments like that? Could God instead have allowed both sexes to experience the same punishment, given they both ate the same apple? Of course he could. He is all powerful, right? We are told this way is more "fitting."

If you're keeping track, that means thousands of years of oppression and suffering for women were considered an acceptable tradeoff for God to have things be poetically appropriate. It wasn't worth raising a finger to prevent.

This is just one of many injustices in the world that make it hard to believe that there is any kind of just God. All we know of God is the visible world he created, which is unjust. I can't expect that the life after this, if there is one, is any more fair in its punishments or any more merciful to the vulnerable than this world is.

And that's part of why I'm still not a believer in any deity. Any one that's responsible for this world probably doesn't have anything good in store for me later.

Wednesday, November 27, 2019

Science is not the patriarchy

For whatever reason, I've noticed a correlation between women and woo. Astrology. Jade eggs. Homeopathy. Women are also more religious than men. If there's no science behind something, there are usually more women who believe in it.

I can't claim to know the full reason why- my guess is there are a lot of reasons. One I hear spelled out a lot is that science is a male-dominated field. So science and modern medicine are characterized as "male ways of knowing," unfairly pushing out the traditions of our foremothers.

This narrative isn't entirely wrong. Our society has the bad habit of doing a tiny bit of scientific exploration, understanding five percent of a thing, jumping in with both feet, and only later realizing that was dangerously stupid. For instance, do you remember when x-rays were thrown around heedlessly- x-rays of laboring women, x-rays to kill ear infections, x-rays to measure children's feet for shoes? Science had gotten far enough to know what it could do, and not far enough to know what it couldn't. Likewise thalidomide, low-fat diets supplemented by corn syrup and cigarettes, and so on. A little more respect for tradition would have stopped people from diving headlong into new fads they didn't fully understand.

Likewise, for a long time doctors were worse at healing people than your granny. Neither could do much for you, but at least granny hadn't come straight from dissecting a corpse without washing her hands. To this day, obstetrics and gynecology, in practice, clings to disproven tactics like episiotomies, supine positioning, and immediate cord clamping, which any midwife could tell you aren't helping. No wonder women, whose first extended encounter with the medical profession might be when giving birth, don't trust doctors.

I'm definitely the first person to tell you the medical profession isn't perfect, or that there are a lot of things science doesn't know. But the root of science and medicine is not the bad practices of clueless doctors. The root is, or should be, the scientific method- testing claims and finding out whether or not they are true. Applied to medicine, this means randomized, controlled trials wherever possible. You don't just take a medicine and see if you feel better, because that doesn't account for randomness - you might have felt better anyway. Instead you give a hundred people the medicine, give a hundred people a sugar pill, and see what percentage of each group gets better.

This practice is what turned medicine from a haphazard collection of folk remedies and bloodletting into something that saves billions of lives. Infant mortality is a fraction of what it was. Lifespans are decades longer. Modern medicine emphatically does work, and it all came from testing remedies and carefully recording the results.

What is masculine about testing things to see if they work? Nothing at all! Dr. Gerty Cori, Dr. Helen Brooke Taussig, and Dr. Virginia Apgar would be offended at the notion. Female doctors and medical researchers have been told for generations that they couldn't have access to medical research- the thing that actually works- because it wasn't for women. But instead, excluding them was the real unscientific, purely tradition-based choice.

Is it possible that women think differently from men? Sure! But if we define it purely in the sense of "finding things out more by ways that are unrelated to truth than by ways that can be tested," all that means is dooming women to be wrong a lot. Tradition is at best a middling way of finding out what works. Gut feelings are even worse. "I feel more connected to myself when I shove a jade egg up my vagina" tells us nothing about whether it's safe or effective for any condition.

Maybe women are better at actually waiting and learning more before leaping headlong into a new discovery. For instance, Frances Oldham Kelsey was the FDA director who refused to approve thalidomide without more testing, thus preventing untold numbers of prenatal deaths and disabilities. Was it because she was a woman, or just because she was conscientious and patient? Who knows.

More contributions of women might also lead to advances in obstetric care, more resources being spent on women's conditions like endometriosis, and more credence given to women's expressions of pain. Medicine (and science in general) aren't finished; there's plenty of improvement available.

But the answer isn't to abandon the whole idea of the demonstrable and turn to woo. If you go to your doctor with pain and he dismisses you, that means you need a better doctor. If there isn't one, that's a terrible thing and tells you something about the state of medicine today. It doesn't tell you medicine is a tool of the patriarchy and true healing is only to be found by rubbing oil on your belly, shoving a rock up your nethers, and blaming retrograde Mercury. If you're going to turn to alternative medicine (as plenty of women do, including me, because of a lack of workable options within the system), you can still choose things whose safety and effectiveness have been studied. This is true of a select few essential oils, a few nutritional regimes (pro tip: anything that includes eating more vegetables will do you at least some good), many of the things trained midwives do, and so on. Your average thing trumpeted by naturalist celebrities doesn't qualify, and it won't start qualifying just because they sell it in a feminist wrapping.

Don't leave science to men because they think it's theirs. It belongs to everyone. It belongs to us.

Sunday, October 6, 2019

Are we getting autism wrong?

Imagine you asked what a heart attack is, and I answered, a disorder characterized by rubbing your arm, moaning, and falling down on the floor.

You'd be a little puzzled, because this definition gets us no closer to what a heart attack is, what is happening in the body.

So you ask, what's the cure?

I answer, well, we've trained all the patients out of rubbing their arms and moaning, but they keep falling over whatever we do. I guess the only solution is tying them upright!

That's kind of where we are on autism. It's described and defined, not by the interior workings of the mind, but by the most noticeable symptoms: social problems, stimming, meltdowns. And the available therapy, which is mainly ABA, focuses entirely on extinguishing behaviors rather than making the person feel any better. They teach social skills and train a child out of stimming, but weirdly the meltdowns only get worse. Or the person starts experiencing anxiety and depression. We know autistic people, especially those considered to be "high functioning," have an elevated suicide risk.

This way of defining autism also keeps girls from being diagnosed. We know that autistic girls are better at mimicking appropriate social skills. So people say, well, that's not autism then. Autism includes poor social skills, so if this girl has figured them out on her own, she can't be autistic.

Women also react to heart attacks differently, but in this case we are told that heart attacks may not involve arm pain and to learn the signs of heart attack in women. What if we considered autism the same way? Rather than saying "the symptoms are different, therefore it can't be autism," maybe we should ask what the symptoms of autism look like in women.

I don't think I can clearly and briefly define autism from the inside. I can say, for sure, that there are sensory processing differences. And that autistic people's brains seem less generalized; they'll often be overpowered in one area and underpowered in another. These two things cause social problems, because social skills require coordination of a lot of different skills at once, and most autistic people will have trouble with at least one of those. But some autistic people will learn to manage the social skills problems early on, and thus be overlooked at truly autistic.

I'm a believer in autism research. Unfortunately, most of the research being done right now is focusing on all the wrong things: either how to extinguish behaviors, or what causes autism in order to prevent it. The first is a problem because changing behaviors doesn't cure autism, and may make a person feel much worse. The second is a problem because autism is almost always genetic, and the only "cure" for genetic ailments at this point is abortion. So while there's nothing wrong in theory with pinpointing specific genes, it becomes a massive problem when people are so scared of having an autistic child they'd demand prenatal testing for it.

Instead, the research I would like to see is more about what is specifically happening in the brain. What does overstimulation look like, and what helps? What interventions actually work in lowering anxiety and stress in the brain? Marko has just turned a corner from a four-month bad spell where he was angry and explosive all the time, and suddenly he's happy and excited again. He's just as autistic as before, but something did change. Could science help us understand what flips this switch in Marko and how to give him more good days?

Unfortunately, society just isn't there. Most people still see an autistic child demanding a green shirt every day or flapping their hands and say, "How do we make them look and act like a neurotypical child?" They're not asking how to help an autistic child live their best life. And until the people giving the money, organizations sponsoring the research, scientists, doctors, and therapists are all centering the well-being of the autistic person, we're not going to make much progress.
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