Puberty at age 2
January 22, 2019 11:19 AM   Subscribe

Patrick Burleigh shares his story, detailing the effect of a rare disease that caused him to go through puberty as a toddler and experience intense hormonal changes in elementary school. As an adult Burleigh is faced with a choice to select embryos without the mutation, which opens the door for he and his father to reflect on the positives that this shared gene had on their lives. CW: child medical procedures some would consider abusive; child sexual behaviors
posted by k8t (49 comments total) 35 users marked this as a favorite
 
Wow. That was outstanding. Thanks for posting it.
posted by Transl3y at 11:52 AM on January 22, 2019 [1 favorite]


It's a HARROWING story and I'm glad he came through on the other end happy and healthy but oh. my. God. Both as an individual who has been a child and can imagine what it would have been like to go through puberty that young, and as a parent who knows how even small differences can create big difficulties ... I just, oh my God.

It also brings home, in a slightly different way, the super-common problem in schools (and the juvenile justice system) that kids who appear physically older get harsher punishments than kids who appear younger. So an impish Dennis-the-Menace 12-year-old who hasn't gotten his growth spurt yet will get away with MURDER because he still looks 8, while a gentle kid who screws up once but reads as 15 at age 12 will have the book thrown at him. And, to compound matters, white adults routinely "read" black children as much older than they are, and treat them that way. I might even use this article the next time I'm talking to someone who's having trouble understanding the major disparities in discipline kids face based on nothing beyond their physical appearance; giving a teenager's body to an elementary schooler did not actually make him any more able to ACT older (less able, if anything, because of the hormones).
posted by Eyebrows McGee at 12:02 PM on January 22, 2019 [64 favorites]


It was briefly discussed in the article, but I sure hope that the treatments nowadays are better than what they were.
posted by k8t at 12:11 PM on January 22, 2019 [3 favorites]


Wow, what an emotional roller coaster!
posted by The Underpants Monster at 12:22 PM on January 22, 2019 [2 favorites]


Yep. Reading it is a combination of deep sympathy for this guy, and all that he went through in childhood, and astonishment at bits of the story, such as the great-grandfather who fought in WWI at the age of eleven.
posted by Halloween Jack at 12:24 PM on January 22, 2019 [31 favorites]


It was briefly discussed in the article, but I sure hope that the treatments nowadays are better than what they were.

Puberty blockers were originally developed for relatively rare conditions like the author's, but now are in much wider use due to the growing understanding/acceptance of transgender teenagers. So in the past decade or two, puberty delaying medication has gotten more attention and R&D from the medical establishment. That's good news for anyone with early-onset puberty, too.
posted by showbiz_liz at 12:39 PM on January 22, 2019 [18 favorites]


That was a great piece thanks for sharing.
posted by smoke at 12:42 PM on January 22, 2019 [1 favorite]


Gut-wrenching.
posted by 3.2.3 at 12:42 PM on January 22, 2019 [1 favorite]


His poor mother, too. Parenting a normal three-year-old is hard enough....
posted by daisystomper at 12:48 PM on January 22, 2019 [14 favorites]


This was an incredible story, there was so much I just never knew. You'd think you'd have heard about the 11 year old who got into a dog fight in WWI! Hell, I'd think I had have heard of this condition before. I was also astonished this guy slipped someone acid, I thought that was just urban myth territory -- who would waste good acid on someone who didn't even want it (a literal child is who)?

I hope anyone going through this today has much better resources and support to help them. Some of the eras involved in the story would be harrowing to have to grow up in for children without any rare diseases/conditions, amplified by any and all "abnormal" factors medical or not.

One thing I'm curious about on a people level is the decision to gamble for the disorder or opt out -- it's the sort of thing that seems quite universal among all sorts of conditions. I hope I never have to make such a call, it must be incredibly difficult, and it seems often folks settle on the gamble, I don't even want to articulate my feelings on such a matter since they are so unqualified and I simply cannot expect to put myself into those shoes and make a choice either, outside of my gut reaction, a gut that's never had to truly struggle with this matter.
posted by GoblinHoney at 12:51 PM on January 22, 2019 [3 favorites]


I did hear about the 11-year-old who enlisted in WWI! I was like, "How would anyone mistake an 11-year-old for a grown man?" Exhibit A: Author at age 14 looking exactly like your typical 24-year-old.
posted by Autumnheart at 12:54 PM on January 22, 2019 [7 favorites]


On the topic of female precocious puberty (warning: familial child abuse): List of youngest birth mothers

That list further erodes my faith in humanity as a species.
posted by benzenedream at 1:13 PM on January 22, 2019 [2 favorites]


Gotta love how their son won’t have to deal with it... but they’re cool with their daughter possibly raising a son with the disorder.
posted by Hypatia at 1:32 PM on January 22, 2019 [14 favorites]


It's a bit far to worry about your daughter's potential male child, if she indeed has biological kids someday.
posted by agregoli at 1:35 PM on January 22, 2019 [6 favorites]


To be fair, they were cool with possibly raising their own son with the disorder. It's not like they were being hypocrites.
posted by Autumnheart at 1:35 PM on January 22, 2019 [7 favorites]


Gotta love how their son won’t have to deal with it... but they’re cool with their daughter possibly raising a son with the disorder.
posted by Hypatia at 4:32 PM on January 22 [+] [!]


Did you read the same article I did? They, themselves, also were prepared and accepting of raising a boy with the mutation. this was not at all "thank god our son is normal, good luck to the daughter tho"
posted by FirstMateKate at 1:37 PM on January 22, 2019 [9 favorites]


Plus presumably they're planning to tell their daughter that she might be a carrier and then she can make her own decisions?
posted by en forme de poire at 1:38 PM on January 22, 2019 [12 favorites]


The point was that they decided not to test for the mutation and weed out any embryos who turned out to have the gene. Whatever the kids had, they had. They could test the son's umbilical cord for the mutation because the son had testicles--he didn't have the gene, and they were glad he wouldn't have to go through all the same stuff that his antecedents did. They couldn't test the daughter for the mutation, so they don't know if she might be a carrier. But if she is, they would embrace anyone who carried the trait. Those two positions are actually affirmative of each other, not contradictory.
posted by Autumnheart at 1:54 PM on January 22, 2019 [4 favorites]


I know that embryos are precious (not in a right to life way but that the extraction and fertilization process is intense) but I would not have judged this couple for selecting embryos without the gene.
posted by k8t at 2:01 PM on January 22, 2019 [15 favorites]


The end of the piece probably could have done with an edit: I simply can't imagine that his wife, someone who works in reproductive medicine, would countenance not telling their daughter, but the piece seems to ends on a note of ambiguity about whether they will. The way it's phrased feels stylistically satisfying, but does end up giving me a strange impression.
posted by howfar at 2:23 PM on January 22, 2019 [6 favorites]


I wonder if the author might have come to a different conclusion had he not had a host of genetic and socioeconomic privileges that counterbalanced the negative effects of the mutation. He ended up six feet tall instead of the not much more than five feet that most men with that condition reach. He "became just another clean-cut white kid with an Ivy League degree," who also married a doctor.

Had he been a poor, short person of color whose behavioral problems (and, let's be clear, repeated criminal acts) landed him in the school to prison pipeline....well, in that case he almost certainly wouldn't have had the financial means to even make the choice to screen the embryos, but if he did have the choice I wonder if he might have decided differently.
posted by jedicus at 2:26 PM on January 22, 2019 [44 favorites]


Yes, I'm sure being 14 and looking like Tom Cruise really made up for being socially ostracized and sexualized and having to spend his entire childhood as a science experiment. #tooprettytosuffer

I think he fully recognizes that he was lucky to come out of it in one piece, considering his father didn't, nor his grandfather, nor his great-grandfather. He's telling us what it was like. We don't need to tell him.
posted by Autumnheart at 2:35 PM on January 22, 2019 [11 favorites]


I found that the pictures really brought this home for me. It’s one thing to read his descriptions and another to look at his childhood snapshots and see just how much older he looked.
posted by stoneweaver at 2:51 PM on January 22, 2019 [12 favorites]


While I think it's reasonable to note that intersectionality applies to disability, I don't think that second-guessing the honestly recounted experiences of a disabled person (I don't think that a disability of this type is easily, if ever, left behind) in this way is very helpful to anyone. Do you publicly weigh up the reproductive choices of white middle class women? If not, please extend the same courtesy to disabled people.
posted by howfar at 2:53 PM on January 22, 2019 [21 favorites]


Testosterone is a powerful drug and it's fascinating to see the anger, violence, rebellion, and poor impulse control happening to generations of these men. I saw the same behaviors seem to crop up overnight with my teenager and I think what we had was pretty typical adolescence.
posted by ShakeyJake at 3:01 PM on January 22, 2019 [3 favorites]


the piece seems to ends on a note of ambiguity about whether they will

Yeah, I think this was just a bit of an odd narrative choice? He wrote this article under his real name. Unless the internet somehow collapses before she's old enough to Google, it's not at all a secret. I think he was just picturing that in a hypothetical way, not really intending that be the outcome.
posted by Sequence at 3:30 PM on January 22, 2019 [3 favorites]


Puberty blockers were originally developed for relatively rare conditions like the author's, but now are in much wider use due to the growing understanding/acceptance of transgender teenagers. So in the past decade or two, puberty delaying medication has gotten more attention and R&D from the medical establishment.

This isn't really the case--the focus has always been on precocious puberty, with the application for trans youth being a convenient side effect. The original study on pausing puberty in trans youth is only like a decade old, with access still being uncommon. (Much like trans people using hormones is all an off-label footnote. You didn't start seeing ads for testosterone replacement therapy because of growing acceptance of transmasculine people. The Androgel patent was running out.)
posted by hoyland at 3:35 PM on January 22, 2019 [7 favorites]


Yeah, several of my chronic health problems are things that run in the family, and I have to admit I simply can't understand what would have been going on in my parents' minds in choosing to risk passing them on. But I accept that it's not my place to judge, whether I understand or not.
posted by The Underpants Monster at 4:01 PM on January 22, 2019 [8 favorites]


This was really fascinating to read. I went through puberty very early but nothing like this. Still, in my experience, developing breasts and putting on the protective weight that girls put on to prepare for menstruation (which in my case went to my hips, butt, and breasts) led to being treated in ways that effectively robbed me of my childhood. To be sexualized so young (or just treated as older than I was) because of my body and to have adults treat me like I was asking for it — a first grader! — did lasting damage. I wish it had been an option for my parents to delay my puberty for a few years but I don't know if they would have without hindsight or whether it was even an option.

I was pretty taken aback by Patrick and his father talking about their condition as something essentially character building and the author deciding not to test the embryos. They can feel how they feel, I just couldn't read this without thinking about my own experience.

Early onset puberty increases the risk of cancers associated with sex hormones, which is another reason in my case I really wish I hadn't started puberty so early. I was surprised the article didn't talk about this.
posted by the thorn bushes have roses at 4:50 PM on January 22, 2019 [30 favorites]


I agree that the pictures really make the story. For comparison, check out this adorable pic of Robert Wadlow, the "Gentle Giant" at age 10. Similarly big for his age, but also very obviously just an enormous kid.
posted by ivan ivanych samovar at 5:08 PM on January 22, 2019 [5 favorites]


I was pretty taken aback by Patrick and his father talking about their condition as something essentially character building and the author deciding not to test the embryos.

Yeah, I think this is a pretty bad idea. I'm glad this guy made it through his experience feeling like it all worked out for the best, but there's no guarantee that his child would survive the same experiences. Not to mention that there are probably a bunch of his ex-classmates who are scarred by being terrorized by this stronger, aggressive older-looking kid. He dosed a child with LSD. I don't know how you can look back at that, being so out of control and the pain it caused you and the pain it caused others and willingly inflict that on your child. People aren't supposed to go through puberty at 2, and the experience described in this article explains why.
posted by mpbx at 5:50 PM on January 22, 2019 [17 favorites]


I was pretty taken aback by Patrick and his father talking about their condition as something essentially character building and the author deciding not to test the embryos.

Yea, this is a bizarre variation of disabled-people-as-inspiration-porn, sort of crossed with "when I was a kid we were beaten, and I turned out ok!". Everything that happened to you as a child is part of who you are. Does that mean that Patrick is going to send his son to military school, or try and get his son to do acid at 12, because those experiences are part of how Patrick turned out to be who he is? No, because that would be self-evidently ludicrous. So is deciding that it would really be pretty ok if the kid should have a genetic mutation that would really fuck up their childhood.
posted by the agents of KAOS at 6:31 PM on January 22, 2019 [18 favorites]


The much better treatments available today probably also figured into their decision. And both having gone through this himself and being a doctor in a related field indicates that the decision was very well informed.

Fascinating article, BTW.
posted by Harald74 at 1:39 AM on January 23, 2019 [3 favorites]


this is a bizarre variation of disabled-people-as-inspiration-porn,

No, it's the profound difficulty incurred by dealing with the fact that disabled people have to deal, every day, with a society that tells us we shouldn't exist. There was even a now deleted comment in this fucking thread describing a group of people as "beings that should not be allowed to be". Disability is not a product of our defective genes, it's the product of a defective society, that disables us by treating our impairments as just too much trouble to account for in everyday life, and hence need "special adaptations" rather than a society that allows us to live as equals as a matter of default.

Would I make the choice to pass on my disability, which makes me suffer every day, to my child? I don't know. It is part of what makes me valuable. It is part of what makes me a person who makes a difference for other people with disabilities. I don't know what I'd do. But I do know it's none of anyone else's business.

Metafilter has not done well in this thread.
posted by howfar at 9:12 AM on January 23, 2019 [16 favorites]


[Just as a note, the "beings that should not be allowed to be" comment was referring to adult men who rape and impregnate girls under 10 years of age, when precocious female puberty was mentioned. It wasn't a great comment for other reasons, including that it was confusingly-written, but that bit referred to child rapists, not disabled people.]
posted by Eyebrows McGee (staff) at 10:52 AM on January 23, 2019 [6 favorites]


[to be honest I shouldn't have mentioned it. I apologise for that aspect of my comment.]
posted by howfar at 10:56 AM on January 23, 2019


My takeaway from the embryo situation is that he and his father finally broke the cycle of not talking about the thing. Earlier in the article, he mentions that the right drug combo was found a few years too late for him, so quality of childhood life for a potential son with the mutation would be better than the generations previously. I feel like the conversation was the most important part.
posted by Ruki at 1:18 PM on January 23, 2019


But I do know it's none of anyone else's business.

Absolutely. That is why you haven't decided to publicly discuss it, unlike the guy in question.


Disability is not a product of our defective genes, it's the product of a defective society,

This is false. My mother will never go hiking with me because she can't walk, and that is not caused by society. My friend's baby will not survive a year because she was born with defective genes. Calling all disability a product of society is infuriatingly dismissive and reductionist.
posted by the agents of KAOS at 1:38 PM on January 23, 2019 [6 favorites]


The choice of testing the embryos is a rough one. The whole story is rough but when you already have fertilized embryos in front of you, I don't get that the more moral choice is to roll the dice. There may be more open communication with his children than he had (extra great no matter what kind of issues his kids may or may not have) but his childhood does sound like hell. Not just for him but for lots of people around him. I'm sorry, you can have all the open communication you want but if your kid is overcome with hormonal impulses that a cocktail of drugs maybe can help (but what about side effects?), that kid is going to be bitter that you didn't save him the trouble. I can't imagine a more perfect storm for a young, hormonal kid than, "You knew and you could've stopped it but you didn't." Fingers crossed that his daughter isn't a carrier? It does seem like they can test for her as a carrier at some point? The whole story is amazing and heart-breaking and I feel really weird about testosterone now.
posted by amanda at 1:41 PM on January 23, 2019 [1 favorite]


This is false. My mother will never go hiking with me because she can't walk, and that is not caused by society. My friend's baby will not survive a year because she was born with defective genes. Calling all disability a product of society is infuriatingly dismissive and reductionist

Disability is not the same thing as impairment or illness. Using the term "disability" to mean "any biological harm a person suffers" ignores decades of disabled activism and scholarship. It's simply not what the term means. To take part in an activity because one is not physically capable of doing so (impairment) is not the same as being unable to take part in an activity because society has determined that your needs must only be catered for as a special concession (disability). There are all kinds of activities that you, I and everyone else, disabled or not, cannot take part in which have nothing to do with ableism or disability. But there are also things that disabled people are excluded from specifically because society does not care enough about enabling us to do so.

Look at it this way; buildings with entrances above street level, even a few feet above it, universally have steps in. This is because, despite the fact that most people could clamber up the huge gap to enter, we are compelled by a wide range of systemic factors to consider the needs of others in access. But to build a ramp for a wheelchair user is not compelled by the same systemic factors. Instead, we must compel it, where possible, by law. Of course, compelling it in the case of many disabilities, particularly those that are not physically discernable, is almost impossible.

We live in a society that is based around car use, for example, despite the fact that a huge number of people are prevented from driving by disability. Those people (including me) are robbed of time, independence and even dignity, because of the systemic barriers to access that arise as a result of the societal determination to place a lower priority on our needs than those whose impairments do not prevent them from driving.

I'm not pulling this stuff out of my arse, you know? Ableism is a constant and painful reality, and, like all privilege, the privilege of the able conceals from them the systemic oppression that goes into the construction of disability.
posted by howfar at 2:36 PM on January 23, 2019 [6 favorites]


To pull out another lens, and one that has been in my mind as I read:

I am on the autism spectrum. I am fairly sure it runs in my family. If I have children, the odds are good that they too will be autistic. Imagine that I could screen for this before birth.

This means, by definition, that my hypothetical child might or might not have autism, which is a disability. It's a disability marked by trauma, in fact; there's a discussion going on in my own peripheries about whether an autism-spectrum child without trauma deriving from repeatedly being shoved past his own boundaries is even diagnosable, because so many of the cues in the diagnostic criteria are traumatic responses that also show up in neurotypical people.

But being on the spectrum isn't inherently bad. It's just that you're frequently brushing against social friction that's caused by people who don't have any context for who you are and what you're communicating, and who (more to the point) don't have any interest in learning. And as more people on the spectrum are explicit about that and demand that other people learn how to express empathy for people who are different from themselves--see, we autistics have a sense of humor, too--we pressure society to change the way that it is structured such that there is room for us to be without breaking under the strain.

Or, okay, I'm queer. You can substitute almost every word in that previous sentence with that, too.

This is what is called the social model of disability. It is more salient to some disabilities (autism, Deafness) than others (chronic pain, schizophrenia), but it seems to me that for this child, there's nothing wrong with him in the described symptom except that the society around him isn't willing to adapt and work with his reality. If everyone was like him, would he feel out of place?

If I could choose, I would choose to have a child who shared either or both of these aspects of myself. I don't think they are inherently bad ways to be a person, or that people who share them are a burden on other people. I don't think they are intrinsically harmful ways to be. So if I could choose, I would choose to have a child who is more like me than otherwise, so that I can resonate with the person who is becoming their own separate person before my eyes as they walk their own journey. Why else do we choose to have biological children?
posted by sciatrix at 2:53 PM on January 23, 2019 [8 favorites]


I mean. Guys, do you think he should hate himself that much, that he believes he should never have been born, that he should aim for his experience to cease to be?

Because that's the logical endpoint of that kind of train of thought! Self hatred, self-annihilation, agreement with the sentiment that the problem is me. *thumps chest* If I do not fit easily into a society that refuses to acknowledge me, who is at fault? Many people would say that it's me. I didn't choose to be born who I am, and like it or not, I'm fucking here, making myself a place whether or not I'm expected.

Do you think that sentiment is so shameful that the people who don't fit should be hidden away so none of the shiny, normal, happy people have to deal with them? Because that is where institutions lead us. Do you think that we should selectively breed people so that we don't have to carry these burdens or suffer the indignity of being a burden? That's where we get eugenics. Do you think--

What do you think this looks like, if you put yourself in the shoes of someone with a disability, and you hear "children like that shouldn't exist?" My god, and someone has the gall to say that this is inspiration porn? What do you think inspiration porn is? Who's getting inspired?
posted by sciatrix at 3:01 PM on January 23, 2019 [6 favorites]


It's (still) much more difficult to be trans or gay in our societies than it is to be straight or cis. Would any of us choose to prevent the birth of a child who we knew would be gay or trans, in order to spare them that suffering?

This isn't intended as a "gotcha", nor is it presented as an exact comparator. Impairments do carry inherent challenges that factor into any decision about whether to bring a person into the world. But I think it is important to consider why there seems to be a significant divergence between responses to the suffering caused by the social construction of disability described in this account and the suffering caused by the social construction of gender and sexuality.

To suggest that to deny a life because it will contain avoidable suffering is a decision with a clear ethical answer is, I think, to ignore the fairly unambiguous counterexamples to this that exist in our morality. Consequentialist utilitarianism, as a practical ethical strategy, is flawed not really because it is wrong (I don't think it is, precisely), but because of how easily our perspectives and prejudices (and our more fundamental limitations) can lead us to overlook how complex the consequences and implications of our decisions usually are.
posted by howfar at 3:13 PM on January 23, 2019 [1 favorite]


Using the term "disability" to mean "any biological harm a person suffers" ignores decades of disabled activism and scholarship.

Of course I'm not using it for that, I don't call my bruised knee a disability. I do call the physical inability to walk a disability. I am pretty stunned that you're actually contesting that.
posted by the agents of KAOS at 3:45 PM on January 23, 2019 [1 favorite]


I don't think that's a particularly pertinent or useful response to the explanations that have been given.
posted by howfar at 3:50 PM on January 23, 2019 [1 favorite]


I think you are confusing an academic or specialized use of the word 'disability' with common usage, and I am angry that you appear to think that my very standard usage of the word is the problem. I'll be off.
posted by the agents of KAOS at 3:53 PM on January 23, 2019 [1 favorite]


I'm not saying that your usage of a standard term is wrong; I'm saying the fact that it is the standard term is wrong. It's not an attack on you, it's an attack on a societal injustice that we are all victims of and parties to.
posted by howfar at 3:58 PM on January 23, 2019 [1 favorite]


*rubbing at forehead* This is a pretty common argument within disability circles, honestly; the social model of disability doesn't correspond to all disabilities, and there are some cases (I mentioned chronic pain, for example) where the usual response to social models is "well, fuck you too then, I want to not deal with this shit." On the upside, it's a much more useful model of understanding disability, particularly for disabled people, than it generally gets credit for at first blush.

the question is whether or not this specific disability falls under the social model or the medical model more effectively. As a biologist, my default is to think in terms of variation not being essentially harmful, and to separate harms caused by societal inflexibility from intrinsic harms of the condition we're eyeing. I'm looking at this thing, and the main issue I am seeing physically of this condition is shortness as an adult + the emotional/mental trauma that's caused by the way the men in the article were raised and their structural treatment by the societies that they were born into.

So that brings me back to the question I started. Whose fault is it that this man's existence has led to difficulties? Whose responsibility is it to welcome him into the world? Is it a collective responsibility to find ways to accommodate people who are different from ourselves, or is a disability that prevents people from interacting with existing systems the individual responsibility of the disabled person and whoever is unlucky enough to be attached to him?
posted by sciatrix at 4:17 PM on January 23, 2019 [1 favorite]


(Please consider, also, that this "academic" and "specialized" use of this term is like... it's like saying "benevolent sexism", maybe, or "intersectionality" within the lens of people talking about oppression based on disability.

I don't think I can overstate how central the social model of disability is to disability activism, and not having heard of it is a real big flashing sign. It's by no means the whole of disability activism, but it's such a pivotal piece that I don't think it's possible to listen to activists talk for any length of time without encountering it.)
posted by sciatrix at 4:24 PM on January 23, 2019 [6 favorites]


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