Slate Star Codex: Genetic Russian Roulette

POSTED ON NOVEMBER 19, 2013 BY SCOTT ALEXANDER

[TRIGGER WARNING: This would be a really bad post to read if you have or are about to have a young child]

I.

One of the downsides to working in psychiatry is that it is slowly but inexorably sapping away first my enthusiasm about, and now even my willingness to, have children.

Medicine was bad enough. It wasn’t the kids who get leukaemia at age seven and die who got to me. It was the ones with syndromes. Down Syndrome is the one everyone knows about, but by no means the worst. Lesch-Nyhan Syndrome is a lovely little condition in which children are born without the ability to metabolize uric acid properly. The results include severe mental retardation, stereotyped jerking movements of the limbs, face frozen in a permanent grimace, and something the textbooks charmingly refer to as “involuntary writhing”. For poorly understood reasons, these children also exhibit “uncontrollable self-injury”, usually head-banging and trying to bite any part of their body within reach of their mouth – something caregivers quickly learn not to let parts of their bodies be. Oh, and also vomiting, spitting, and uncontrollable urges to use profanity.

(for a fun intellectual exercise, imagine what arguments might be able to convince William of Ockham that “deficiency in uric acid metabolism” is a more parsimonious explanation for this syndrome than “possessed by demons”)

The disability rights crowd will probably call me ableist, or disableophobic, or misodisablistic, or whatever people say these days, but the idea of having a child with Lesch-Nyhan Syndrome, and having to take care of him until he dies (likely in his teens; it’s not a very survivable disease) or gets old enough to go off to a group home – that terrifies me. I worry I would spend every second of every day hating my kid and begrudging him the countless hours and tens of thousands of dollars I would be spending on him, all while maintaining a smile both to him – because goodness knows he has it bad enough already without having to cope with crushing guilt and parental enmity – and to the rest of the world – so I could get my official status as Brave and Kind Long-Suffering Caretaker, instead of Ableist Jerk Who Kind Of Wishes He Could Just Put His Kid Out Of His Misery And Get On With His Life).

(note: I use the masculine pronoun not unreflectively, but because Lesch-Nyhan is x-linked recessive)

The good news is the incidence of Lesch-Nyhan Syndrome is only 1/400,000 births. The bad news is that if it’s not Lesch-Nyhan Syndrome, it could be Treacher-Collins Syndrome. Or DiGeorge Syndrome. Or Cornelia de Lange Syndrome. Or any of a thousand others. Have you ever seen a Pediatric Genetics text? They’re not small books.

And not all of these are Lesch-Nyhan-level bad – I like playing with Down Syndrome kids. But I would still be unexpectedly finding out that what I thought was just a perfectly normal super-gargantuan committment to sink most of my resources into a mostly-helpless creature for twenty-five years would in fact become, without my planning or consent, a super-ultra-titano-gargantuan commitment to sink even more of my resources into an even-more-helpless creature indefinitely. And all the associated dreams – of seeing my kid get grow up and raise a family, of debating the great questions of life with zir, of secretly training zir to be a child prodigy who does calculus at age five like John Stuart Mill – would all be gone. I am reluctant to say “all the things I look forward to about having a kid”, because someone will lecture me about how I should want to just gaze deep into my child’s eyes, loving them unconditionally as a human being in the image of God. But as the saying goes, we can do what we want but cannot want what we want. Also, eye contact is scary.

But at this point it’s not even the syndromes that worry me the most. The kids with syndromes I’ve met are nice people, I like them, and if it came to that I’d at least have great social support from my amazing friends.

Right now what scares me is psychiatry.

II.

I remember vividly the first time I met my first antisocial personality disorder patient with perfect parents.

The dad was a something something manager at Ford. The mom was a high school teacher. Both from middle class backgrounds, never been in a fight, never been in jail, never even used drugs. Two other children at home, one of them working on college applications to nice schools, the other getting As in junior high and playing in the band.

Their oldest kid was in the psychiatric hospital where I worked because…actually, no, I can’t remember what he was in for, the particular time when I met his parents. It could have been the stabbing people. It could have been the constant drug use. It could have been lying like a rug to the police. And as I was explaining whichever the latest disaster was to his parents, on their faces was just this look of heartbreak mixed with total lack of surprise.

I’d seen dozens of patients worse than this guy already, but they’d all been easy to brush off as something that could never happen to me. Either their parents were just as bad as they are, or they’d been beaten as a kid, or they had a history of sexual abuse, or something else where it was very easy to say “Aha! I will just not attack my children with broken beer bottles when I am a father, and then they won’t turn out this way.” Or since technically I’m supposed to be kind of a genetic determinist, I could just not have terrible person genes, and marry someone else without terrible person genes, and our kid would be okay too.

This guy’s family – and he was the first of several – didn’t give me any of those easy outs. You can do everything right in the world, and your kid can still grow up to be a murderer, or a rapist, or just one of those guys with a tattoo of a skull and a nickname like “Snake”.

I like the metaphor of “the genetic lottery”, but on the worst days it starts to feel more like genetic Russian Roulette. Maybe the first kid is beautiful and grows up to be a scientist, the second one is compassionate and becomes an artist, and then boom, the third one vivisects stray cats and tries to burn the house down. But it’s too late to return her for store credit; you’re morally obligated to spend twenty years taking care of her and sending her to special schools and taking late night calls from the police and paying her bail, all in the desperate hope that maybe one day she’ll shape up. Like I said. Russian roulette.

III.

I get irrationally angry whenever I hear people diss discipline. Like, if you just believe spanking is often bad for children, then that’s fine and as far as I can tell empirically correct. What bothers me is the people who see someone spank their kid and say “What that parent really needs to learn to do is talk things out. If they would just learn to communicate with their kid, the kid would learn that what ze’s doing is wrong, apologize, and none of this violence would be necessary.” This is the sort of statement that makes perfect sense if you’ve never been in a position where you had to control a genuinely bad (or even mediocre) kid.

(as such I am suspicious of its signaling value. That is, I worry that saying children should never be disciplined harshly is a way of saying “Ha ha, my children are so great I never need to discipline them. And there you are with a bad apple. Chump!”)

Don’t get me wrong, there are lots of problems with parents abusing kids under the excuse of “discipline”, and the idea of an unelected and unaccountable individual being able to hurt someone else whenever they want is terrifying. It might be that a Congressional bill to ban all discipline stronger than dirty looks would on net be a good thing. But when people try to push it by saying “If you just demonstrated your love and affection, you wouldn’t need any discipline” – that’s what gets my blood boiling.

I think this dates from my time as a schoolteacher. When I was a student, I hated all my teachers and thought that if they just ditched the constant repetition, the cutesy but vapid games, the police state attitude, then everyone would learn a lot more and school would finally live up to its potential as “not totally incompatible with learning, sometimes”.

And then I started teaching English, tried presenting the actually interesting things about the English language at a reasonable pace as if I were talking to real human beings. And it was a disaster . I would give this really brilliant and lucid presentation of a fascinating concept, and then ask a basic question about it, and even though I had just explained it, no one in the class would even have been listening to it. They’d be too busy chattering to one another in the corner. So finally out of desperation I was like “Who wants to do some kind of idiotic activity in which we all pick English words and color them in and then do a stupid dance about them??!” (I may not have used those exact words) and sure enough everyone wanted to and at the end some of them sort of vaguely remembered the vocabulary.

By the end of the school year I had realized that nothing was getting learned without threatening a test on it later, nothing was getting learned regardless unless it was rote memorization of a few especially boring points, and that I could usually force students to sit still long enough to learn it if and only if I bribed them with vapid games at regular intervals.

Yet pretty much every day I see people saying “Schools are evil fascist institutions that deliberately avoid teaching students for sinister reasons. If you just inspire a love of learning in them, they’ll be thrilled to finally have new vistas to explore and they’ll go above and beyond what you possibly expected.”

To which the only answer is no they frickin’ won’t . Yes, there will be two or three who do. Probably you were one of them, or your kid is one of them, and you think everything should be centered around those people. Fine. That’s what home schooling is for. But there will also be oh so many who ask “Will the grandeur and beauty of the fathomless universe be on the test?”. And when you say that the true test is whether they feel connected to the tradition of inquiry into the mysteries of Nature, they’ll roll their eyes and secretly play Pokemon on their Nintendo DS thinking you can’t see it if it’s held kind of under their desk.

I don’t think I used to be an optimist. I think I used to be a narcissist. I figured that when I was a teacher, everything would work out, my kids would be kind and attentive, my lessons would stick, and there would be no behavioral problems or if there are they would quiet down after I give them a friendly talk about why attention is important. I felt like the Universe owed it to me to have everything work out. I didn’t realize on a gut level that kids could just not cooperate .

The parents who pooh-pooh strict discipline have the same blind spot. It’s an easy blind spot to have if your own kids are wonderful. It’s hard to realize that you can just ask them to behave until you’re blue in the face, set strict limits, send them to bed without dessert, and the kid can just choose to not behave .

And we’ve come a long way from Lesch-Nyhan Syndrome here, but these all tie together into a complicated knot of worry. It’s a fundamental realization that I could have a kid I can’t fix . Not in the “I want her to be a businessperson but she wants to be a poet” sort of way, but in the “I want her to not vivisect cats for fun, and she wants to vivisect cats for fun” sort of way. Someone whom I lavish all the love in the world on, and give exactly the right dose of prenatal iodine, and whatever, and the universe just says “Nope, you’re stuck with this person. You should have thought of that before one of your sperm had a single nucleotide mutation in an out-of-the-way corner of the genome”.

I have a serious girlfriend, and I’m only two years younger than my father was when he had me, and all my friends are having kids, and I really want children, and I have no idea what I’m going to do.