I'm sure it doesn't explain everything but I wonder If there is age confounding here.
Obviously there has been a lot more openness about and awareness of transgenderism in recent years. But also I feel like hypermobility wasn't discussed a lot even 10 years ago.
I have had back problems since I was a child. I've now learnt that it's probably caused by hypermobility. But no one suggested that when I first had issues ~20 years ago.
This occurred to me. There may be a lot hypermobile people out there, but being on the right kind of social media encourages you to realize it's a thing.
I know when we were kids in the 80s/90s there were lots of discussions of "double jointed" people. And everyone seemed to know a couple. But I don't think I heard the word "hypermobility" until a couple years ago.
I'm 20 years older. Double jointedness was discussed by kids in 60s and 70s. I always thought it was somewhat associated with musicians. I'm both. But I don't think double jointed is really at all the same thing as EDS and hypermotility.
EDS requires a specific medical diagnosis.(<1%) It is also painful.
Being double jointed is self diagnosable.(may be as high as 20%. Actually just saw Brazilian pre school study showing generalized joint laxity 64%). Not painful.
I thought hypermobility was just variable. As in, a lot of people are variably hypermobile, and in some cases it can result in pain of varying severity. EDS is a specific diagnosis based not just on hypermobility but on additional features as well (eg the stretchy skin thing).
The Ehlers-Danlos Support UK website says:
"Joint hypermobility with its possible complications is now classified using the idea of a spectrum. At one end is simple hypermobility which causes no symptoms, is not a disease and is a trait, like height. At the other end of our spectrum is hEDS, and in between falls a range of hypermobility-related conditions called hypermobility spectrum disorders (HSD).
...
HSD are likely to be common. Someone with HSD can be just as symptomatic, more so even, than someone with hEDS. Management advice for both hEDS and HSD is the same."
So far as I understand it, hypermobility syndrome and hypermobility spectrum disorders DO NOT include people with asymptomatic hypermobility or people with double-jointedness but no other symptoms.
So I do not think HSD even with the expanded definition is likely to really be common.
The medical community got objective with its criteria for EDS in 2017, so this quasi medical category HSD and the spectrum was created to accommodate people "left out".
I'm double-jointed. My thumb can easily bend sideways to be almost parallel with my wrist, and with a stronger pull I can get it completely parallel. (I used to be able to get it to touch my wrist, but I'm too old to do painful shit to impress people anymore.)
I've never noticed any other joint peculiarities. I'm fairly flexible but no gymnast. So yeah. It's not simply the same thing. Even outside of diagnosis, after thinking it over while reading this article, I'm still using the word "double-jointed" and not "hypermobile" for myself.
The brain has connective tissue. Maybe EDS disrupts brain connective tissue leading to general neurodiversity? Or even particularly targeted at however the brain represents theory of mind?
I think this is the actual explanation. For example, Fragile X Syndrome is a genetic condition that disrupts the production of single protein, FMRP, and this disorder results in both hypermobility and autism. A single protein can affect two seemingly unrelated things
Whenever we see some pleiotropic gene with a bunch of bad effects you have to wonder what is keeping it around. Even new genes, like all those we have gotten from Neanderthals ~50k years ago, have been swept away if they are particularly bad. Must be some upside.
It could go the other way just as easily. Mobility is, strangely, a mostly neural issue. There is a set point for each joint after which muscles fire heavily to prevent moving past that point. With practice you can teach the brain that it's safe to go beyond that, and the set point moves. Incidentally, this is why you get tied up on some forms of anesthesia - muscles don't work at all and you can end up hurting a joint just from an arm dropping from the bed.
That is really fascinating, I didn't know how mental flexibility was. I suppose it makes sense. Joints are, of course, elastic. This is why stretching works to get more flexible. If your mind is sort of loosey goosey about set points then you could get lots of "stretching" in just with daily life.
I think you misunderstood Radu's point. The reason stretching makes you more flexible isn't (primarily) that the joints are becoming more elastic, it's that you're training your body to allow a greater amount of stretch in the joint before contracting its muscles.
It's kind of like how people who start weightlifting can massively improve their lifting strength in the first few weeks with little to no increase in muscle mass. Most of the "beginner gains" are from synchronizing muscle contraction, and thus getting more use out of the muscle the person already had. Obviously past that point further gains mostly reflect muscle hypertrophy.
To add to this, I suffer from MS related spasticity that makes me rather stiff. The fever I got with Covid made my legs temporarily unresponsive. I could only move them manually with my arms but they were super flexible and loose.
That might explain an association with EDS-H, but none of the other types. https://www.ehlers-danlos.com/eds-types/ All the others have been linked to genetic mutations affecting connective tissues.
In principle, EDS-H could actually have completely different etiology from all the others. But if it were, say, a kinesthetic-proprioceptive manifestation of the sensory hyper/hyposensitivity we see in autism, then we'd expect to see elevated rates of both hypermobility (from hyposensitivity) and unusual hypomobility (from hypersensitivity) in autism. Do we? That's not an observation I've seen.
Also, as someone whose autistic sensory issues are more on the "hyper" end, I'm hypermobile, not hypomobile. Or I was until I started testosterone, anyway - I was just over the point threshold and I can't put my palms on the floor anymore so I probably don't qualify now.
"Kinesiophobia" is a term used to describe moving less because of a belief that bad might happen (like joint injury). People whose physical discomfort seems attributable to EDS or other joint hypermobility are often warned against "kinesiophobia" (which, if your neurology/musculature/whatevs doesn't keep your range of motion bounded away from high-risk-of-injury territory, is at least partly a rational fear).
I do sometimes wonder if the reason my range of motion is so wide is that my joints "feel" just about as "stiff" mid-range-of-motion as they do at the extremes, meaning I get less signal of how far is too far. (The sensation of stiffness seems to be a brain-based warning rather than reflective of less-deformable tissues.)
Sure - but why the hell's my skin stretchy? That's not neural. If you got out the calipers and stretched the skin of trans people, I'd bet you'd find it stretched farther, on average.
"...the ECM [a major component of connective tissue] supports the growth and establishment of neuronal axons and dendrites and also helps maintain synaptic connections [2]. Interestingly, the local ECM must be degraded and remodeled to allow for synaptic plasticity– a process that’s dependent on neural activity [3]. Scientists have also found that the ECM forms compartments surrounding neurons that help to limit the diffusion of the excitatory neurotransmitter, glutamate– allowing refinement of those signals between nearby neurons [4]. Without such barriers, glutamate would be allowed to reach more distant neurons, substantially altering patterns of cell communication..."
And connective tissue, specifically collagen 5 (collagen 5 mutations underlie many forms of classic EDS), seems especially to be involved in early neurological development:
"...Much earlier in development, during embryogenesis, some types of collagen such as collagen 5 are also expressed in the germinal regions of the brain in areas that are actively producing neurons [5]. While it’s uncertain exactly what collagen 5 may be doing during neurogenesis, it’s known that other forms of collagen (e.g., collagen 4) are expressed in these same regions during early development and seem to be important for neuronal maturation [6]..."
Not too surprising. Glutamate is the main excitatory neurotransmitter and accounts for ~60-70% of synapses in the brain (wikipedia quotes 90% but doesn't cite a source and I've seen different values quoted elsewhere).
Also from an evolutionary perspective it was basically the first neurotransmitter to develop, comb jellyfish for example branched off the evolutionary tree early enough that its the only neurotransmitter they possess. Many (most, even) other neurochemical pathways are glutamate-modulatory.
Statistically, if you have one form of nerodivergence, you are more likely to have another form then the general population. I expect this is due to the thing where, when you have one generic mutation you are more likely than average to have another.
"Form of neurodivergence" is not a fundamental category. We don't have the "true name" for the vast majority of possible deviations from the norm, and any one of them can manifest in an apparent variety of ways.
I'm totally cis-hetero, but I'm hypermobile and super clumsy and would welcome anecdotal or more supported info about how to deal with the weird disconnect between brain/body that plagues we hypermobiles (and maybe everyone to some extent--I wouldn't know).
Yeah, me too also. Cis-hetero, hypermobile, and so-so proprioception. I do a lot of yoga, because I think it helps a little with the proprioception, and it's entertaining to find it so easy to do all the stretches. I don't think I really have EDS, because the few people I know with EDS would hurt themselves doing yoga. Like, one woman I know dislocates her ankle while she's asleep. My situation isn't nearly that bad.
I assumed my hypermobility couldn't possibly be that bad, either, until a nurse friend I know told me I should check.
I had heard of can-pull-your-neck-skin-over-your-face EDS before, and I definitely didn't have – or want to have – *that*. That is, I knew some people's problem was blatantly obvious lax skin and joints, and instead of thinking, "Hey, mine are a little lax, maybe, I, too, am 'special'," I thought, "Whew, whatever might be up with my skin and joints, I'm glad it's not *that*!"
My stopping yogalike stretching (especially, it seems, stretches designed *for* sciatica) coincided with the sciatica in my driving leg clearing up. Considering other factors, I can't say for sure that stretching had really been hurting me. But it's possible stretching was making stuff worse for me.
Makes sense in theory. I deeply loathe yoga because I have always had the feeling my body is acting "wrong" because I'm so clumsy, so I just _can't_ handle being told my breathing is wrong, etc. I don't have severe EDS or anything, just obvious hypermobility. My skin, etc. Is fine.
Martial arts, particularily throw based martial arts (Judo, BJJ) made that hypermobility and especially the clumsyness much better for me. It sorta makes sense, you need to learn how to move your body in incredibly specific ways (google Berimbolo step by step - a 26 minute video pops up for a single transition move). If martial arts are a bit too martial for you, I strongly assume that dancing produces the same result, of forcing your brain to rebuild these connections with the body by teaching it complex choreographies from the ground up.
Thanks! I have tried dance but just can't do it--I can do moves right that involve top or bottom half of body but not both at once. Martial arts is a good idea.
Many teens are fairly flexible, but I'm finding the tone of this (hypermobile people just want to be seen as special, just like trans people!) really annoying. I do not enjoy being hypermobile.
No problem. There is also a strange relation between strength and flexibility, where people with hypermobile joints are significantly weaker than those without. My flexibility was a huge help in martial arts, but I was a complete wimp at first. Learning how to throw people was probably what made the clumsyness better, but building some muscle by yeeting around people is most likely what made the hyperflexibility better. It is said that if you are too strong for your low flexibility you risk injury, but maybe if you are too flexible for your low strength that is bad aswell.
>Male hypermobile participants had significantly less strength than non-hypermobile males in the right (71.7 Nm, SD = 23.1, vs 97.6 Nm, SD = 47.4, p = 0.006*) and left (74.8 Nm, SD = 24.3, vs 97.7 Nm, SD = 45.5, p = 0.007*) elbow extensors and right knee extensors (188.7 Nm, SD = 83.3, vs 228.3 Nm, SD = 106.7, p = 0.03*). In females, both elbow extensors (right: 51.9 Nm, SD = 16.2 vs 48.8 Nm, SD = 17.8, p = 0.4; left: 48.9 Nm, SD = 17.2, vs 44.7 Nm, SD = 15.1, p = 0.2) and knee extensors (right: 161.3 Nm, SD = 74.9 vs 145.5 Nm, SD = 75.8, p = 0.3; left: 155.2 Nm, SD = 73 vs 124.3 Nm, SD = 69.6, p = 0.07) strength were not statistically different between hypermobile and non-hypermobile participants.
That's interesting--I don't bench press weights or anything but exercise for health, and have been perplexed by my lack of upper body strength relative to my overall fitness. I had just chalked it up to being female.
Martial arts, especially those that involve throwing and also the so-called internal arts, train your postural muscles. I think these are important both for joint stability and proprioception.
I think my strength is lower than it should be. I take some resistance training classes every week, but I'll never be really strong. I have wondered about the relationship between my hypermobility and my seemingly low strength. It makes yoga weird because all the things requiring flexibility are easy, and all the things requiring strength are hard, so I'm terrible at arm balances and the like.
This aligns with my experience, I'd say I have average to below average joint flexibility and I've always enjoyed strength training, partly because while I lift I'm subjectively confident that I won't accidentally overload my joints and damage something because my muscles are much more likely to fail first.
All of my immediate family members were or are hypermobile; we were also all AT LEAST average on the athletic field or with lifting heavy objects. It could be that hypermobile people gravitate towards sedentary lives because exercise is slightly more uncomfortable for them ON AVERAGE with a lot of variance. Such that you have people with hypermobility that are powerlifters who can bench three hundred pounds and others that are crippled by dislocations.
I don't have any helpful suggestion for dealing with brain-body "loosenes" other than accepting the burden of having to consciously practice proprioception more than seems normal, and finding activities you enjoy well enough that the added burden of that practice – plus repeatedly hearing "you're doing it wrong" – is tolerable. Any discipline that teaches consciously retraining proprioception might help if you don't find it prohibitively frustrating.
"Many teens are fairly flexible, but I'm finding the tone of this (hypermobile people just want to be seen as special, just like trans people!) really annoying. I do not enjoy being hypermobile."
Fortunately, the world is full of helpful moralists eager to inform us that we must secretly be enjoying experiences we don't find enjoyable in hopes of shaming us out of our problems.
Sometimes, the shaming even kindasorta works. For example, I'm shy and self-blaming, and shaming myself by telling myself these habits were "secretly the vice of pride" sometimes proved helpful for temporarily kicking myself into being more outgoing and less focused on my flaws. I didn't find shaming myself out of shame a sustainable strategy long-term, but for someone who doesn't need a longer-term strategy to succeed in changing their habits, I could see how something along those lines might work. (Incidentally, I can't perceive myself as excessively self-blaming. I still think I *should* blame myself just about as much as I do, and my problem is just being bad at handling what I perceive as a "normal" amount self-blame (for which I can, obviously, blame myself). But others with my interest at heart, and who ought to know, keep pointing out that excessive self-blame is a real problem for me, that I'd be a better person with less of it.)
Yeah, that's kind of my problem--I am so sensitive about being told my body is doing things "wrong" that anything that involves constructive body feedback makes me anxious. I have had very gentle yoga, dance, etc instructors, and at my age, best I'm probably going to be able to do is maintain my (solo-activity) fitness habits and be proud of that.
Excessive self-blame is not my particular issue but sounds incredibly stressful. Positive thoughts and self-care to you, whatever that means for you.
I came to this thread to mention the same thing, though my experience is in modern fencing.
I always had shitty proprioception and fencing taught me a lot about where my body is in space and in relation to itself--I did piano as a child and I knew where my fingertips were, but not where my arm was. Fencing fixed that. A different classmate who started in taekwondo and came to fencing reported similar awareness benefits from both disciplines.
As far as hypermobility, there was a guy in my fencing class with hypermobile knees and he reported fencing helping (when the knees cooperated).
I think "joint issues → poor proprioception" is the most interesting step to me. In the field of robotics there's something called inverse kinematics that's used when you know where you want the end of a robot arm. You use the properties of the arm to back into calculations for the corresponding angle of each of the intermediate joints because this is what you effectively need to tell your motors in order to put the end of the arm where you want it to be. With zero knowledge of the relevant neuroscience, it's easy for me to imagine how joints that are either inconsistent from movement to movement, or gradually changing over/after the course of development could really throw a wrench into whatever the brain's analog of inverse kinematics is.
If you took a fleet of identical robots and varied the range of motion on their joints, how much longer would learning motor control take for the robots with the laxer joints?
If a robot's range of motion can be set either narrow enough to avoid damaging configurations without "thinking", or wide enough that avoiding damaging configurations would have to be carefully learned, how much does that change the robot's computational burden? (I'd guess that an increase in range of motion that doesn't increase damaging configurations would be less burdensome than an increase of range of motion that does.)
Roboticists talk about "joint limits". I don't quite understand what they mean by the term, but could make an effort to understand the math if I found a congenial starting point in the literature.
What you're describing isn't how must robots work (though I'm sure there have been experiments in robots "learning" this stuff). Typically the mapping between joint angles and end effector (the end of the robot arm where there's usually a tool) is done in advance by the designers, in the software. So the robot isn't "thinking", per se, when it goes to move. It just crunches some numbers and then moves each joint accordingly. Unpredictable joints or joints that are consistent but different from what was designed in will mean that the end effector will be positioned somewhere the robot/user isn't expecting. Typically, nowadays, there are also torque sensors built into joints so that if the robot collides with something it will stop trying to move. "Joint limits" aren't complicated, they're just how far a particular joint can move, usually an angle. You can roughly think of your elbow as having limits at 0° and say 270°. It just can't physically move beyond that range.
Thanks! As you point out, there are probably experiments in robots "learning" this stuff, and that learning, rather than what's programmed in advance by designers, is what I'm curious about.
Human joints sometimes exceed their joint limits by dislocating, and the wider a human body's range of motion already is, the easier it is for that body to achieve configurations increasing the risk of dislocation.
Maybe, but I'm talking about otherwise. The thing I'm interested in is whether there's a general "suggestibility" factor or general diathesis that also accounts for, say, neuresthenia.
The new political talking point seems to be "that 'born in the wrong body' stuff is just for the normies, the same way the gays did 'born this way' - it makes the cis hets sympathetic because 'poor you, you can't help being like that so you shouldn't be persecuted' and that gets us what we want".
Now some of the very online activists are going after dysphoria etc. as medical gatekeeping - the only reason for transition should be 'because I want to', and that should be enough.
> the only reason for transition should be 'because I want to', and that should be enough.
If you're paying your own medical bills and lifetime or hormone therapy, then sure. Where that's not the case is when considerations of medical necessity enter the picture.
I think you've got a confusing typo here-- you wrote:
'Here’s the results for biological men - “M (cisgender)” is coded as cis, “F (transgender f → m)” or “Other” is coded as trans.'
Since you are talking about biological men, I think you meant to say 'F (transgender m→ f)' not 'F (transgender f → m)' ie, the sentance should read: 'Here’s the results for biological men - “M (cisgender)” is coded as cis, “F (transgender m→ f)” or “Other” is coded as trans.'
Thank you so much for doing this analysis. I only had a comment about the cis-trans, biological-trans nomenclature. You switch kind of liberally between the terms “biological woman” and “cis woman” (and same for men) despite there being an inexact overlap of the two (e.g. nonbinary afab people; intersex people who identify as cis; etc), and despite having asked only questions about cis or trans status in the survey.
It results in a small loss of specificity and doesn’t appear to aid clarity either (plus it raises hackles I’m sure for any trans readers and/or survey responders seeing themselves referred to as “biological men” or “biological women”).
It was just a kind of surprising detour from the usually very appropriate and specific terminology you use when discussing anything trans, and I couldn’t see any benefit gained by it. (So I thought it worth drawing attention to/asking about.)
I think it's pretty clear exactly what is meant, especially in the context of the question being asked — the categories being opposed here are cis and trans, in the case of the EDS hypotheses, and biological male/female, in the case of analyzing the data.
I haven't checked, but possibly Scott actually does use the terms exactly appropriately as the immediate context shifts from one to the other.
-------------
Regardless, I think this is hardly, uh, hackle-raising, so to speak: "biological men" captures exactly the relevant distinction we want, and trans readers can hardly be unaware of the fact that there is a (biological) difference here (else no need to distinguish at all).
Something like "AMAB" identifies the population we want to talk about, in the latter case, roughly as well as "cis men" does — that is, there are conceivable but rare/unlikely exceptions — meaning that, by your apparent standard for precision in language, there's some other circumlocution Scott would have to use; presumably, it would require explanation, being another unfamiliar neologism to most; and it would mean exactly the same thing as "biological male" anyway.
In other words: using a different term here would be less clear, more troublesome, and ultimately just an entirely pointless step on another euphemism treadmill.
Speaking of such treadmills, this is sort of related to the recent post about "slur cascades": if a circumlocution is used and becomes sufficiently universal, such that everyone immediately mentally translates it without effort, it will gain the exact same stigma the original had and need to replaced again.
(Males --> okay no sorry *biological* males but there are non-biological males too --> okay no sorry we don't want to remind you about that reality, we mean *chromosomal males* --> no wait sorry we mean...)
...so, uh, you might not be able to tell but I disagree that anything needs changing here.
I think you misunderstood the thrust of my concern. It’s a) that if you use the term “biological woman” and “cis woman” interchangeably you get false positives (i.e., people who are one but not the other are misidentified in the data: a serious concern in a sample of less than 100), and b) when you also (in the same text) use “biological women” to refer to trans men, you create grammatical aberrations whereby a word that is specifically intended in one instance to mean “x, to the exclusion of trans people” now in another instance means “x, specifically the trans members of x.”
There is an inconsistency in this usage that results in mismatches that I can clearly point out. I would invite you to give me a clear example of who would not be included in the already existing phrase-set: i.e., amab-afab, trans, cis, nonbinary, intersex. If you can invent a possible person who would not be adequately described by those words, such that “biological” becomes a necessary or even useful (rather than confusing) descriptor, I will take your point. But as it is I don’t see it.
To be clear, the main issue is that it creates inconsistency (and is used to mean cis, which is not its meaning) where simply using known, established nomenclature avoids that. (And as a plus avoids the risk of offence, but that’s only a plus - which is why I parenthesised it.)
>I think you misunderstood the thrust of my concern. It’s a) [...] b) [...]<
That part of your comment is addressed in the first paragraphs of mine. I've added a helpful line break to make it clearer.
>If you can invent a possible person who would not be adequately described by those words<
I think you misunderstood the thrust of my comment. It isn't that there is no combination of words that can specify some individual; it's that none of these terms exactly capture the population we want to talk about when we use the term "biological male" — or, at least, capture it no better than "cis male" would; and, as you point out, there are possible (if rare) exceptions.
>that’s only a plus - which is why I parenthesised it<
I'm glad to hear it! I felt your implication — and, uncharitably, your real motivation — was that it's Wrong and Transphobic to use such a term. I apologize if I misread you.
It’s a fair note that people would be more likely to understand what population was referred to by “biological men” than, say, “people assigned male” or “amab people,” but I think when the topic is trans people specifically (or any, let’s say, esoteric demographic), then some esoteric vernacular can actually aid clarity. The clearest example of the sort of confusion that arises from this can probably be seen in the comment directly above mine, where the commenter is asking if a certain part of the text is really about trans men as it suggests (in an instance where that is written as a subcategory of “biological men”) or if that’s a typo.
It’s okay. I’m biased in that I have the belief that, where possible if it doesn’t affect accuracy, language should be altered to avoid offence - but I don’t think I’m arguing from that standpoint right now. This does look to be an occasion where a different nomenclature would be more accurate.
I think that very precise terms are necessary if we get to "there is indeed a sub-population of trans people who suffer from joint disorders at a disproportionate rate and that turns out to be (intersex people who were assigned AMAB and later identified as trans/people with this particular chromosomal profile where it's site X on chromosome Z that is involved)" but for a first break down of the data to sift through, we probably do have to stick with "biological male/biological female" as a rough approximation.
I think most people are willing to make concessions, but it's that currently transgender issues are such a political minefield and culture war topic that any perception is of demands by diktat being made. See "The Gamer" and its attitude of "We're not going to review a transphobic game but we're still going to lecture you about it":
"Hogwarts Legacy has already sold over 12 million copies. Good job, everyone - we worked together to show that pesky woke boycott who’s boss and stuck up for the little billionaire and the multinational corporation. The continued acceptance of JK Rowling’s universe and its transphobic baggage is a clear sign that gamers are willing to throw aside societal progress and the support of minority groups if it means playing the next big video game.
February was an avalanche of moral compromises from fellow critics, friends, and family. I watched as they bargained with their personal worth as a trans ally if they decided to buy this game, their excitement outweighing the pleads of us fighting for human rights on the sidelines. Here at TheGamer, we decided against reviewing or guiding Hogwarts Legacy. Our coverage instead serves to inform the greater conversation and shine a light on how its potential success and the ongoing boycott speaks to a far larger societal issue."
Scott *isn't* using the terms “biological women” and “cis women” interchangeably, though? By "biological women", he's referring to cis women + trans men + a few other groups such as AFAB enbies, an agglomeration of people that corresponds to, from survey responses, those that selected "Female" for the "what sex were you assigned at birth?" question. I ctrl-F'd the word "biological" and none of Scott's uses are as a synonym for "cis".
"(plus it raises hackles I’m sure for any trans readers and/or survey responders seeing themselves referred to as “biological men” or “biological women”)"
They should grow a thicker skin then. Biology is highly relevant to the topic Scott is investigating.
I made a series of arguments as to how the term was misused and could result in misidentified respondents. In the course of that, in one small parenthesis, I noted that fixing this problem would also make some trans people feel better, purely as an aside and not as part of my argument.
That you focused on that little aside and no other part of my argument shows me, essentially, that you only like this terminology precisely because it does NOT make trans people feel better/that whether or not it’s accurate or appropriate is irrelevant, so long as it secures the value of alienating trans people.
The thing is: the term is used inaccurately here and does result in false positives, though I must apologise that in the course of correcting that problem, yes, you might also make some trans people more comfortable.
C'mon, that's disingenuous. It's perfectly possible to disagree only with, or most with, only one part of a comment — and your implication is not just "we might make the world a nicer place :)", but that it's *wrong* to use a term like "biological male".
(Hence, my own post... so, uh, I'm not *entirely* unbiased, here. *cough*)
As A Trans Woman(tm) I genuinely didn't even notice this apparent disconnect until you pointed it out; the intended usage seemed quite clear from context. Sometimes sex and gender still need to be demarcated! For whatever that's worth. The expected replies then wrote themselves, which didn't raise any of my hackles, but did make me think "brother, here we go again". Which is exactly why I think the whole language-semantics thing is a dead end: it tends to generate a lot more heat than whatever the initial alleged offense was, with very little potential light even in the most charitable of reactions. Sort of related to the "making up a black guy to get mad at" thing..."making up a trans person to be offended on behalf of". We're not exactly gun-shy ourselves about telling others when we're offended.
(I do want to clarify that I appreciate the good intentions and faith anyway, this was pretty civil compared to how such conversations usually go. Best of a bad sittuation and all that.)
The problem is the clumsiness of the terms involved - investigating EDS/joint hypermobility disorders, it's the neurology, physiology and the rest of the purely biological systems we're after, to find out "is something going on here with hormones or what?"
So then when sorting out people who say they do/don't have it, we're sorting them on biology. Do trans people really have these conditions more? If so, why? Did they have them before transition?
So there we go for "men" - that's biological men, be that cis men with male biology including influence of hormones *and* trans women before they started taking oestrogen (if we're trying to see is oestrogen the defining factor here). Same with "women" - cis women and trans men before they started on testosterone. If you're a trans woman and you had this condition before starting the course of oestrogen, that is evidence against the oestrogen hypothesis - and unfortunately that does rest on "biological male" and "biological female".
There isn't really an easy way to get around "biology of a male" and "biology of a female" when discussing "is this condition related to specific, physical biological factors?"
It seems that the "instagram" theory is extremely easy to falsify.
I have generalized joint hypermobility (I'm also queer / not cis in a vague sense that doesn't show up on the survey). This is a diagnosis with clear physical markers. Stuff like "your elbows overextend more than 10 degrees.
Most variants of EDS are also like this. It's only some (I think ?) rarer variants that don't present with joint hypermobility and skin extension.
Before seeing your post, I never bothered to check if my elbows overextend more than 10 degrees. Now that I've checked, it's something like 10 degrees, probably slightly more? Hard to tell.
Yeah I don't know exactly how it's measured, but I think you're supposed to look at the bone structure, not anything external. Also just FWIW, 10 degrees is like the edge of what's considered "normal".
I guess my point wasn't clear. I was saying that it's totally possible for people to read about EDS on Instagram, check if they have it, and discover that they do, while everyone not on Instagram never checks how much their elbows can overextend because they don't care and therefore would answer "no, I don't have EDS" on a survey.
"This is a diagnosis with clear physical markers. Stuff like 'your elbows overextend more than 10 degrees.'"
Sure. Unlike stereotypically “fashionably vague” illnesses, EDS can be confirmed by hard-to-fake (which is usually what we want when we demand “objective”) testing, genetic or physiometric, in particular the low-cost, low-tech measurements of Beighton scoring.
But then, who decides which measurements reflect illness rather than benign variation, and is their decision right?
Since range of motion depends partly on practice, how likely is it that some non-hypermobile people train themselves into higher Beighton scores in order to get more sympathy or at least a label for their life's frustrations? I think even very frustrated people are unlikely to choose artificially increasing their Beighton score as a way of avoiding responsibility for their problems, but I can't be sure it never happens.
And I can't be 100% sure that, just because I matched the physiometric requirements for EDS, and I find my body a moderately uncomfortable place to live, that I "really have a real thing called EDS". Maybe my hypermobility is benign, my slight skin oddity merely cosmetic, neither a sign of significant connective-tissue problems, and some other coincidence, like atopy or mere whininess, explains my perceptions of physical discomfort. Nonetheless, "EDS is probably a real thing and I probably have it" seems less absurd than the alternate hypotheses available to me, which had managed to grow quite absurd indeed.
A geneticist diagnosed me with EDS based on additional factors like skin involvement. "Physiometric requirements" may also include skin measurements, in addition to goniometry, and did in my case. My skin measurements also exceeded the threshold for EDS according to Howard P Levy's protocol for reducing EDS false positives.
It is true that I lack an identified gene for EDS, so I suppose we could invent a category like "hypermobility with EDS-like skin involvement" and stick me in it to avoid slapping me with the EDS label, but, as of now (and it could change! – the boundaries have changed a few times already!), the skin signs put me in the "EDS" category.
(Edited to add: I don't mean to keep advertising Howard P Levy's diagnostic protocol in these comments. I never met him, only had his measurement protocol used on me by the medicos who did my measurements. But precisely because the boundaries of EDS are disputed, it seems relevant to mention the boundaries used to categorize me, especially for the joint and skin measurements, which should be harder to fake than patients' self-report.)
Oh, ok! It wasn't clear to me from your previous comment that you'd been diagnosed - sorry about that.
Yeah, any clinical diagnosis is going to have fuzzy boundaries. We've had a rule-in genetic test for classical EDS for decades - we can validate the clinical diagnosis with near-100% certainty - and even so, the clinical criteria *still* only capture about 80% of the people we *know* have it. https://ehlersdanlosnews.com/news/diagnostic-criteria-classical-eds-may-need-update/?cn-reloaded=1
Right. My official diagnosis is something like "hEDS with skin involvement", to telegraph that that I lack a known gene for cEDS, though physiologically, I present more "classically" than many diagnosed with hEDS do. Compared to the most flagrant cases of cEDS, of course, my presentation is quite mild!
My (cisgender) spouse has EDS -- diagnosed after a lengthy process involving multiple doctors and ultimately a geneticist.
My (transgender) daughter has not been diagnosed, but is similarly hypermobile, prone to subluxation/dislocation, etc.
And another of our children, while undiagnosed, is pretty obviously "on the spectrum" in the area formerly referred to as Asperger Syndrome before that diagnosis got merged into other autism spectrum disorders.
My takeaway from the EDS/autism link: Yay. I get to blame my wife for all the kids' problems. On the other hand, she's also obviously the reason they're good-looking, so ...
Oh, I forgot to mention: Neither I nor my spouse nor the son use Instagram. I don't think the daughter does either. I'm probably the most social-media-active of the family.
The fact that so many conditions that seemingly have no connection are related to autism make me think that autism (which for the purposes of this comment will refer exclusively to the "reads esoteric blogs better than people" autism rather than the "cannot form a coherent sentence" autism, which may or may not be the same condition) is less an actual condition and more just a result of adapting to many small, sometimes difficult to describe dysfunctions. From personal experience it seems that autistic people, myself included, suffer from numerous weird maladies that have nothing to do with social interaction.
Gut inflammation, weird skin conditions, extreme/non-standard effects of common drugs like caffeine, joint problems, food intolerances, gender dysphoria, body dysmorphia, circulatory issues, epilepsy/other neurological disorders, psoriasis, kidney disease, sleep disorders etc. It's a weird constellation of health problems that seem particularly concentrated among autists. Not that everyone has all of these conditions of course, but every autistic person I know has at least 3 of these, and I'm struggling to think of one non-autist I know that has more than two.
John below me mentions vaccines, but I don't think that's the cause. I imagine it's something more like when you crash a car in such a way that it doesn't run quite right anymore, but not in such a way that you can point to anything specific. Yeah, it's clunkier than before, and it doesn't have quite as much zoom to it, and oh, yeah, that belt makes a clicking noise, and the oil seems to disappear a little quicker than it should, but hey, it runs, right? The issue with the car isn't anything particular, everything about it is just a little bit broken. To me, that's what autism feels like, both from an internal view, and from viewing others.
As to what the crash was: Who knows? Personally, I'd lay the blame at all those different things we know are bad for us and continue to do, particularly those that started becoming more common since around 1980 or so, since the cohorts born after then seem to have the problem much more frequently. Antibiotics ruin gut microbiomes, and yet we consume unreasonable amounts of antibiotics through our food. Then there's plastics, which even if the effects aren't extreme surely cause some amount of damage during the vulnerable years. Throw in horrible foods, a lack of physical activity, and staring at a screen for inordinate amounts of time and yeah, I have no doubt that our bodies are just a little bit broken everywhere.
I have not heard of an analogy like this being used to describe autism (of the Aspergers-as-was kind) before, but it seems immediately plausible. Pure observation alone (of an autist I am close to) lends immediate support to the idea.
One thing this does not cover is the tendency for these same people to think differently and yet frequently deeply insightfully and fruitfully about topics that interest them. Systems that have errors introduced into them generally generate more errors. But that does not hold true for many higher-functioning autistic people who can cheerfully run rings around neurotypicals when it comes to complex thinking in their fields of choice.
I'm going to ask my own sample of one about this first chance I get. Thanks for introducing the concept.
In the meantime, are there any other autistic people out there who might like to comment on their own subjective experiences and how they align - or not - with this idea?
I’ll bite. I’m basically the prototype for this article, being 1) transsex (I prefer this term) 2) autistic 3) have ADHD 4) have allergies 5) have sleep problems 6) have a health condition related to EDS but don’t have hyper-mobile joints. That said, if you met me on the street, you’d see me as nothing more or less than a woman. Just one who’s definitely a huge nerd.
I despise all this “trans attention” and was fairly unpleasantly surprised to get this ACX email, so I’ve been anxiety-scrolling through the comments hoping they aren’t too hateful. Your comment made me pause, though; those who know me well would probably agree with your autism description as describing my particular “flavor” of autism well. I enjoy complexity, and have no interest in tradition if it doesn’t serve the present or contradicts new information. This all makes me excellent at my technical line of work, the friend you can count on to give you extraordinarily specific and generally helpful advice, and… “too much” for most people. It needs to be said that this particular cluster of neurodivergences, health-related problems, and severe gender dysphoria can be really damn lonely. They’re stigmatized individually in many brackets of society, including sometimes by the very doctors we need to help us. Having several just makes it much worse.
You might find it informative to research the “Social Model of Disability” versus the “(Bio)Medical Model of Disability”. Traits that are advantageous in one time and place may be impairing in another. In a hunter-gatherer tribe, many autistic traits are much more of an asset; I’d argue no neurotypical person can really compete with an autist hyperfocusing on one of their lifelong “special interests”. Consider if that special interest is finding edible plants, or making fishing hooks out of wood. Our sensory overwhelm in cities becomes high environmental sensitivity out in nature.
I would also argue trans people defying strict categorization into either the social or biomedical models is the source of much prejudice and confusion. In an androgynous world, I would have still had severe physical dysphoria (and I did, from my earliest memories). But in a world that celebrated rather than hated that difference, life would have been substantially easier.
Not explored in the article is the confounder of complex trauma, which is also heavily associated with executive dysfunction, social difficulties, sleep disorders, autoimmunity and more. It’s not a particularly controversial statement that non-traumatized autists essentially do not exist, at least in Western countries. The situation isn’t much better for trans people. At a minimum, our exceptionally high rates of complex trauma may explain our elevated rates of mental illness, particularly depression and anxiety. Who wouldn’t get depressed when your own species rejects you for existing? And yet, we have many gifts to offer, if only the rest of humanity would try a lot harder to understand.
[Side note: “functioning” labels have been obsoleted like the term “Asperger’s”; autistic “functioning” can vary temporally and situationally, and stigmatizes those who mask their autism less (the Internet is littered with longer and far more detailed explanations).]
Two brief points in reply: anxiety scrolling probably isn't necessary here as most ACX-ers are decent if occasionally outspoken people.
And secondly, I did choose my phrasing carefully regarding the way I couched the term Aspergers, if you care to go back to the original post. The three autists I know best (and I genuinely do know them quite well, even though I am absolutely aware I do not 'know' their experiences, obviously) all prefer and continue to use the term 'Aspergers', even though I understand not everyone agrees with this.
Sometimes it's tricky to avoid getting caught between a rock and a hard place regarding terminology, especially as an outsider.
I wouldn't beat yourself up about it. The reality is that there is a need for precision when discussing the topic, and lumping together a massive spectrum under the range of "autism" while explicitly eliminating terminology meant to differentiate points on that spectrum is, to me, one of the worst things that can be done "for" autists.
I know for a fact that autistic functioning can vary (that's my own experience for sure, and part of what has sparked my interest in environmental impacts on autism!) but that doesn't mean there isn't a fairly reasonable split between Aspergers-esque autism and more extreme instances. Is it a difference of degree rather than kind? Maybe, but so is the difference between starvation and gluttony.
I'd accept effectively any terms to make the distinction, but the distinction must be made.
It may well be genetic, but if it results in people not fitting in with their peers/families, being misunderstood, and being blamed and punished for rudeness when they didn't intend to be rude and don't understand what they should do differently next time, then it seems reasonable that it could near-universally lead to trauma (depending on quite how you define trauma).
Please excuse me for laughing, but it looks like we're looping around to the "Don't say 'coloured people', that is a slur, say 'people of colour' instead".
I was given to understand that the former term "transsexual" had fallen out of favour and indeed was being regarded in the area of being a slur, and transgender was the new correct term. Now we're going to "don't say 'transsexual', say 'transsex' instead"?
No. People are allowed to have individual preferences about what they're called.
In this particular case, a subset of trans people don't like the implication that our condition is about "gender" for various reasons, and a few members of that subset have held on to the words "transsex"/"transsexual" despite the broader group's effort to taboo those terms.
More like "Asperger's" (older neutral term still used by a minority of the group for themselves) than "queer" (older slur being 'reclaimed' and used as an umbrella term for the whole group, including people who prefer not to use it for themselves) or "high functioning" (term which is perceived to insult people other than the ones it describes, and is also disputed on grounds of accuracy/precision by many of the people it's applied to).
" “functioning” labels have been obsoleted like the term “Asperger’s”; autistic “functioning” can vary temporally and situationally, and stigmatizes those who mask their autism less"
And that notion of "stigmatising" stigmatises those of us who weren't fortunate enough to be diagnosed at an early age (or ever) and have had no choice but to learn to be 'functional' - it tells us "you're letting the side down, you're not properly 'on the spectrum', how dare you claim to be Asperger's as if that makes you special and different from the rest of us, if you haven't had a public meltdown can you even claim to be autistic?"
It really is great that people are being diagnosed, and getting treatments tailored to their needs, and getting accommodations, and getting recognised. It is not great when this kind of sniffiness about "complex trauma" and "you are stigmatising other autistic people by not living down to the stereotype" is used against us, the people who have had to live with "I can't in reality scream SHUT UP SHUT UP SHUT UP at my work colleagues when they are speaking in normal voices at normal pitch, I have to knuckle down and get on with it, sensory processing issues be damned".
Because we don't have the piece of paper from the doctor saying we have needs, and so the lucky ones who do have the Official Certificate can go fuck themselves when finger-wagging at us for not being Proper Autists.
I realise the above is very aggressive, but I'm just tired. I've been doing this for decades, and I'm tired.
Because there is a real gap between the theory and the practice, and despite all the yap about recognising autism and the support bodies and national publicity, in effect unless you have the Magic Piece of Paper with the official diagnosis, and you are in a particular socio-economic class and working in the exact kind of job where they're happy to let you wear noise-cancelling headphones because what they require you to do is hyperfocus, don't talk to anyone else, and just work on this one task for hours, you're shit out of luck.
It's happened to me that I played music at work - at a low level, and a classical music station - to help with the whole exterior noise bit, and the boss came around and took the speakers off the PC because Distraction. (To be fair, that was for *everyone*, not just me, because we have to hear the phone ringing and answer it, if people come to the reception door, etc.) So the third time at various jobs this happened, I got the message. Can you imagine if I asked to wear noise-cancelling headphones?
All because I don't have the Official Diagnosis. And trying to get one at my age is worse than pulling teeth. I have an entire rant about my experiences with the medical system, mental health services included, but that's not useful to recount here. Just take it that even if there is help available, I can't access it because I'm too old and - ironically - too functional (having been forced by circumstances to be functional or at least pull off a convincing facsimile of same).
So, let's agree that I *am* complexly traumatised. So what? That and ten cents will get you a cup of coffee as the saying goes. I don't have any choice but to struggle on, being "functional" as best I can in public for the limited time I need to pull it off.
So the whole "don't talk about functional please, that stigmatises those of us who can't do it!" rubs me up the wrong way because where is the support for us, the ones who can't get away with not being able to pull it off? From our own peers, or those who should be our peers? Telling us that in fact we shouldn't be functional, that is colluding in our own oppression or something?
I'd love not to have to 'mask' or whatever the inner circle jargon is, but I don't have that luxury. I have to keep on pretending, because there isn't the support or safety net to let me relax and stop.
A maybe-interesting comparison I can think of to the usefulness of autism is my own experience on stimulants. I originally got put on them due to an inability to focus on my work. They were effective at alleviating that, but they were accompanied by a strange shift in my emotions and personality.
I became distant and cold, and not in a "Tough luck, kiddo" kind of way, but in a "I literally could not care any less about the fact that your family just died, please pay up" kind of way. Emotions became flattened and basically non-existent beyond mild annoyance and mild satisfaction.
Was I productive, effective, and could have lived my whole life like that? Sure. Do I consider myself to have been "broken" during that time? Absolutely. I have no doubt it would make me more accomplished, but I was distinctly lacking in basic aspects of humanity.
I see autism as similar (though very different in the details.) Some sort of shift in -something- whether that be dysfunctional body systems, brain chemistry, or whatever else, breaks people just a little in various ways, and the adaptive routing around the faults is what we call autism. I wouldn't want to give up my autism, frankly, but I can't deny my life would have been objectively better on almost every metric if I had been a bit more "normal."
"I became distant and cold, and not in a "Tough luck, kiddo" kind of way, but in a "I literally could not care any less about the fact that your family just died, please pay up" kind of way."
I have that, but without stimulants, which makes me wonder if going on stimulants would instead trigger the "I cry over kittens and sunsets" type of reaction?
This is part of why I get into fights on the Internet with strangers and come across as aggressive and uncaring - I don't care. People recount heartstrings-tugging story and I am *supposed* to react in the appropriately emotional way, but my strings remain unmoved and I *don't* go "Oh, now you have touched my feelings, I totally change my opinion of the entire matter!"
Nope, argue me out of it but don't rely on "This makes me sad, doesn't it make you sad, too?"
That's also why things like "people only have negative opinions on LGBT matters because they can't personally apply the situation to themselves, once they know someone who is LGBT they change their mind" doesn't work on me. Now I'm supposed to shift my views because I am mildly acquainted with you and I don't want to be rude or inconsiderate (where "rude and inconsiderate" means "you don't agree with me") because that might make you uncomfortable? I don't care and you can't make me.
Thank you, Matthieu. I know that I am hypersensitive to anything that smacks of emotional manipulation, possibly because of being 'on the spectrum' and not getting social cues well and having problems with that, and possibly because of attempts by various people in my past to use emotional blackmail/elicit particular reactions out of me. So defensively I have reacted by being very flat of affect and going "Oh, really?" whether the story being told is one supposed to make me horrified, angry, sympathetic, enthusiastic, happy, or whatever.
That's why I go for the confrontational "yeah yeah your poor fee-fees, but what are the *facts* of this situation?". Unhappily, I do find aggression the easiest emotion to access, which is something I do have to be careful about - I can come across as aggressive/angry even when that's not what I intend.
Chirping in to add: Directness and being confrontational aren't valued enough in today's society.
There are times I wish I hadn't bothered to learn the social niceties of pretending to care about other people's emotional shit. Would that I could just say to so many people: "The world is hard and unfair and I would absolutely be willing to help you with whatever your next steps are, but I don't really care about the bad stuff that happened to you."
But here I am with a relationship management / sales career, an autism diagnosis, and a really well tuned set of social programs to "relate" to people. Thankfully working from home lets me be me and I only need to run the program for an hour or two at a time.
"I became distant and cold, and not in a 'Tough luck, kiddo' kind of way, but in a 'I literally could not care any less about the fact that your family just died, please pay up' kind of way. Emotions became flattened and basically non-existent beyond mild annoyance and mild satisfaction."
This happened to me for the three months I tried hormonal birth control (a levonorgestrol-dispensing IUD). I was more focused, but unable to relax, appreciate beauty as much, or feel as much sympathy. Just annoyance at anyone impeding my productivity.
The creepy part was I didn't notice that clearly or attribute it to the IUD until I got it taken out due to physical pain despite being placed correctly. Then over three days, my normal self gradually came back.
>Dr Berman works on part of chromosome 7, the deletion of which causes Williams syndrome, identified in 1961 by a doctor of that name. Dr Bearden works on DiGeorge syndrome, likewise eponymously identified in 1968, and caused by a deletion of part of chromosome 22. Both have counterparts, noted more recently, that result from an extra copy of the labile chromosomal section. As the two researchers explained, comparing the under- and over-representations of these sections has deepened understanding of the neurological roles of the genes thereon.
>People with Williams syndrome have a range of symptoms. Some are anatomical, such as a characteristic face shape. Others are behavioural—a tendency to be talkative, to be sociable, to be good at recognising faces (though otherwise poor at visual-spatial tasks) and to have good empathy with others. In essence, these are the opposite of autism. Those with the syndrome’s converse, known as Dup7, have a different face shape. They also learn to talk later than normal, are bad at recognising faces (though otherwise good at visual-spatial tasks), and are unsociable. These latter traits are those associated with autism.
>Dr Berman has shed light on the role in this of two genes, GTF2Iand LIMK1, found in the affected region. GTF2I encodes a type of protein called a general transcription factor. Transcription factors initiate production of RNA copies of genes that then act as instructions for making proteins. As that suggests, GTF2I is involved in many such initiations, which may help explain Williams syndrome’s disparate manifestations. LIMK1 encodes an enzyme known to be involved in brain development.
Hard copies
>Dr Berman and her group have demonstrated correlations between the “doses” of these genes (whether there are one, two or three copies) and the sizes of affected brain areas. Magnetic-resonance imaging (MRI) showed that the brain’s total volume increases with the number of copies of the affected chromosomal region (so is smaller than normal with the deletion, and larger than normal with Dup7). But all of this growth happens in the biggest part, the cerebrum. In the second-biggest part, the cerebellum, the reverse happens.
>She has now narrowed things down. Within the cerebrum, she has found, the amount of grey matter in an area called the intraparietal sulcus, which is known to be involved in visual attention (and thus visual-spatial awareness), is dose-dependent on LIMK1. In contrast, the volume of another area, the insula, which has been linked to emotions such as compassion, is dependent on the dose of GTF2I. Those findings nicely match genes to brain function.
// Quote End //
If autism is related to Chromosome 9 and Williams Syndrome/Dup 7, if it is basically a minor but similar form of Dup7, then maybe all of these other issues come somewhere from the Chromosome 7 aswell, which is basically the Genetics explanation from Scott but in different.
People have collected quota a lot of genetic data for ASD - check out the MSSNG and SPARK projects - and as far as I know haven't found that kind of bias for chromosome 7 that you postulate.
My recollection is that that the first high-functioning autist (he got into Caltech and immediately flunked out due to doing things like writing dates in history papers in Base 8) I ever met was not until I was 14 in 1973. The next year I became friends with another extreme nerd, but a happier one, the son of a famous sci-fi novelist and home computer aficionado, who memorably pointed out to me that the rise of computers would be making life better and better for people like him. One of my regrets in life was that I had to turn down, due to a schedule conflict, his invitation to go with his family to the national sci-fi convention in Kansas City where they'd be giving Robert Heinlein his lifetime achievement award.
It could be that I just didn't notice all the on-the-spectrum kids I had met before then. But I'm pretty observant and was fascinated by the two I met in 1973-74. For instance, when I became the high school newspaper editor in 1975, I made sure to write about the second one frequently as a striking character on the campus scene.
So, my admittedly untrustworthy impression is that this type of personality found so often among Scott's readers is more numerous today than in even the not very distant past when I was young.
Why?
Beats me.
It could be due to some kind of insidious poisoning as Mike Patton suggests. Or it could be a more positive process: that new technology and the new modes of thought necessary for the new technology called forth the new personalities.
I'm reminded of a touching passage in William Patterson's 2011 biography of Heinlein, in which that suave officer and gentleman takes over the 1941 sci-fi convention called in his honor and instead takes great pains to be a genial host for his awkward nerdish fans and reassures them, improbable as it sounded, that _they_ were the wave of the future. Patterson wrote:
[Heinlein] was probably the most sophisticated and cosmopolitan person the fans had ever come into contact with, and he seemed to them like something out of a movie….Science-fiction readers in 1941 were social outcasts. To be told -- seriously -- that they were personally an important element in human progress was apparently…intoxicating for them.
It's probably not coincidental that the peak of Heinlein's brilliance as a short story writer was 1959's "All You Zombies," in which transgenderism and a time machine justify utter solipsism.
I appreciate the added perspective, and it certainly aligns with what I hear from others who have lived long enough. The idea of the autistic personality being an emergent force, the response of humanity to the sci-fi world we now inhabit, is one I like. I think to some extent it's compatible with my own, to some degree, especially if the autism is a result of -adaptations- to the pains of the modern environment, rather than simply a direct result of their influence.
I think of an alternate world, one where computers turned out to be a bust but something else, say witchcraft, that appeals to a different type of person turned out to be real and vital for advancement. Would the western world have a newfound cohort of "witchy" men and women, prone to spiritual ramblings and overconnectedness, spring up in response to society's needs? Perhaps then we'd be discussing so many witches are left-handed rather than why so many autists have digestive issues.
I think it's just down to recognition. When I was in what you Americans call middle school, dyslexia was not a thing. Yes, it existed and was a recognised condition, but in general use? No, not even in schools. You were just stupid.
Then it became something that was widely known, and now you weren't stupid if you tested for dyslexia. Now there were more diagnoses. If you compared the 70s (when I was a kid) to the 90s, you would have been saying the same thing: where did all these dyslexics come from, what's causing it?
Same thing with autism. The really bad cases (the bash your head against the wall ones) would have been in institutional care. The functional weirdoes? Well there have always been weird people, but they sit quietly in class, don't cause trouble, do their homework and pass the tests. Leave 'em alone. Maybe they're just shy. They'll grow out of it as they get older and go off to work.
Then the diagnoses came in, and at earlier ages, and now its "where are all these autistics coming from? what's causing it?"
It's hard to say about Heinlein stories. Solipsism turns up here and there in his work, including in _Beyond This Horizon_, an early novel with a lot of interesting stuff in it, but not a particularly good novel.
So does transgenderism and wanting to be a woman. I'm thinking especially of Andrew Jackson Libby, who first appears as an extremely shy young man, a fast intuitive calculator, and probable autist ("Misfit"), later a genius mathematician(_Methuselah's Children_), and later still, much happier as a woman (_Number of the Beast_).
Consider the hypothesis that autism is a constellation of symptoms all caused by impaired detoxification. Vaccines are only one possible exposure --water, air, food, etc all introduce toxic elements which is a problem if one's body can't get them OUT.
Being at moderate elevation in the Great Plains east of the Rockies actually looks better than being *in* the Rockies.
I think the strongest match for that geographic pattern, in terms of "indirect indicators of possible pollution sources," is precipitation. More specifically, winter precipitation. http://www.bonap.org/Climate%20Maps/ClimateMaps.html
Interesting. It will be confounded by genetics and trade patterns (useless to live in Colorado if the contaminants are in avocadoes from California ) though.
"Personally, I'd lay the blame at all those different things we know are bad for us and continue to do, particularly those that started becoming more common since around 1980 or so, since the cohorts born after then seem to have the problem much more frequently."
I don't know about that, my paternal family have the signs of 'being on the spectrum' going back generations and they weren't imbibing the current things (probably an entire set of different 'things that were bad for you in 1900').
I think that folding in Aspergers with autism was a bad move, and that instead of cramming a ton of things in under the autism umbrella, we need to differentiate *more*. There's the "syndrome where you're fitted for a job in Silicon Valley" variety, the "chew your own fingers off" variety, the "socially weird and awkward and some of these physical traits" variety, the "look at my many weird maladies all in a bundle but otherwise I'm functional" variety, etc.
There might well be splitting off "well this isn't autism per se, it's a new condition we have to give a separate name for in the next issue of the DMV" if that were done, and I think it would actually be beneficial.
I absolutely agree, especially if those things actually have different underlying physical causes, and I'd be surprised if they don't. You make a good point about the genetic autism, and I definitely think that is a similar and different condition.
Makes me think of something I've been mulling over for awhile. I live in a rural area of the US that was settled by North Germanic settlers in the early 1800s, and has had an extremely low amount of immigration in the time since. Most anyone who hasn't moved here in the last 20 years can trace their family back to here for at least 4 generations.
They're different. They talk different, they think different, and it's in ways that are hard to put my finger on, but more or less sum up to mild autism. Friends I've brought here have said:
"Why is everyone here so -weird-?"
"Is everyone here autistic?"
"It's like the people here are from another planet"
Among other issues, our area suffers from the problem that all the native drivers drive the speed limit. Not 5 over. At the speed limit. Drives anyone from other areas wild.
There's definitely a genetic component to the autistic personality, and it certainly feels different than the autistic types I was referring to in my original post as broken. Here's hoping for a better type distinction one of these days.
I think Asperger's *is* a different thing, and it should never have been lumped in, but that was as much a political decision as anything else (all the parents of autistic kids who give their kids the Miracle Mineral Solution aren't evil abusers, they're just desperate people who want their kids to have a normal life. The guy who invented the scam, on the other hand, should get the tortures of the damned).
"Driving at the exact speed limit" does sound Aspie, to me 😁 And if everybody in the region does it, then there's no reason to change! This is their local society and they fit in, what's the problem? Take your foot off the accelerator, leadfoot!
I have this image in my head that transgender women are really into dancing. Perhaps there's a cause/effect thing going on. Where joint mobility is corellated with dancing, and being transgender is corellated with joint mobility.
For me, when I try to touch my radial with my thumb, I have a 90 degree gap. My maximum wrist to hand angle is less than 90 degrees.
There are two wildly different main sets of transgender M to F's: highly effeminate boys vs. masculine boys with the autogynephilic fetish. The latter, who tend to be high IQ and intellectually aggressive, are probably not into dancing to an above average extent.
There are other forms of structured body movement I enjoy - some types of sports, swimming feels natural even if chlorine stinks, it's fun breaking down pallets of goods - but dancing has always seemed inexplicably silly to me. I guess it's elegant in the way any highly-orchestrated coordinated endeavor is...but if I find myself compelled by music to move, it's in the fashion of pretend-conducting, headbanging, or tapping along to a sick beat. Not cutting a rug. (Also, modern degeneracies like "twerking" have really cheapened whatever modest appeal existed in the first place. I remember when "dance music" meant stuff like tango, not whatever subgenre of house music is the current hotness...)
But then again, I'm not upwardly joint-mobile either, so perhaps that's the better correlate.
There’s ballroom culture, which was especially popular in the 80s/90s, and recently came back into the mainstream spotlight recently with the TV show “Pose”. That culture invented “voguing” where many of the moves and people were hypermobile
With EDS, the joint issues are the most salient, however the condition impacts tissues across the body. Muscles, digestive track, blood vessels, skin, eyelids, etc. Everything is kind of gooier than it should be. Also, most people with EDS are diagnosed later in life, like in their 20s or 30s. So you have this weird body, that isn’t like other people’s bodies. You know your body is different because you can’t do the things peers can effortlessly do, yet you can do things peers find impossible.
Medical professionals are not trained to diagnose EDS, for the most part. It is a rare condition. They are trained to think horses when they hear hoofbeats, not zebras so when you describe your symptoms, medical professionals look at you dumbfounded and start working on more common problems. (The EDS advocacy organization mascot is a zebra for this reason.)
So when doctors don’t diagnose you with EDS, but you know something is wrong, what can you do? I can see a scenario like the following with someone with EDS playing out: Start reading stuff online. There is this thing called trans? Where I’m in the wrong body? Yes. My body is not right. Sign me up. There is treatment? Great. Sign me up. This will take care of these strange issues plaguing my body? You call it gender dysphoria, doc? Ok. Let’s start the treatment. I want my body to be normal.
So I guess what I’m trying to say is:
The patient knows something is wrong with their body.
The physician want to help the patient. The physician is aware of gender dysphoria but not EDS, so the EDS diagnosis is missed.
There is a treatment for a condition, gender dysphoria, that can seem like EDS.
So people are getting treated for gender dysphoria, which they may not really have, but not for the underlying EDS.
Notes: there are many types of EDS, hypermobile being the most common. There are genetic tests for many of the types, but to my knowledge, there still isn’t an agreed upon test for hyper mobile EDS. It’s based on symptoms.
There really isn’t much treatment for EDS. It’s managing symptoms. Your body tissues have been built to a given specification. Short of some science fiction stuff, you aren’t getting all new skin, joints, muscles, blood vessels, etc.
Being born male with EDS means noticing you're father away from the robust masculine stereotype than other boys are. Plus, EDS *can* (does not have to) come with gracile, Marfanoid habitus that codes as more "feminine".
Being born female with EDS? A common experience is that "becoming a woman" (going through female puberty) with EDS *hurts* – it feels "wrong" – but everyone's inclined to pat teenage girls with undiscovered EDS on the head, telling them either life is just like this for every woman (making womanhood as such seem rather less desirable), or they're "attention seeking", or have a psychosomatic problem...
And, if those born female with EDS do transition to male hormones, androgens build joint-protective muscle which really does help control EDS symptoms. Plus, boosting the "confidence hormone" (or, if you like, "arrogance hormone", testosterone) in someone socialized to continually doubt one's experience of one's own body might also help.
As I recall, there was a comment in a previous thread about how a girl with severe EDS is, in effect, getting aged rapidly so that they never *look* like a pretty teenager which is a serious social problem in addition to the pain level.
Yes, the skin involvement (scarring, sagging, and so on) can leave a gal feeling prematurely beaten by the ugly stick. Cosmetic symptoms of EDS are variable, though, so being outstandingly pretty isn't proof someone doesn't have EDS.
Since children are often promised their won't accumulate noticeable scars unless they pick at them, and absorb conventional wisdom that striae and cellulite should only happen to those who let themselves get fat, I found that much of the shame over appearance had a moral dimension. I was conspicuously scarred by chicken pox for a good, long while, and told it was just the consequence of "having picked". I hadn't picked. But who could get that scarred without picking? So the grownups around me simply assumed I'd picked and couldn't admit it. Similarly, since not getting fat in the first place is supposed to protect against sagging, cellulite, and stretch marks, a teen girl marked with those things outs herself as a "fattie" even if she isn't. My skin would scream THIS CHILD HAS NO SELF-CONTROL even when I did. So fun to be a teen whose skin is a scarlet letter she didn't "earn"!
Cellulite is a secondary sexual characteristic; you can be a fit 16-year-old girl and still have it. As for stretch marks...that is a crapshoot and EDS increases the risk you'll get them. I got some on my thighs, as a man, at 15 or 16.
Severe EDS is pretty rare compared to the "hypermobile" subvariants. I am hypermobile and do not look older than I am (40s) and am aware I was perceived as attractive in my youth. (I have never sought a diagnosis, but I obviously inherited hypermobility from one of my parents, and one of my kids is also obviously hypermobile.)
Couldn’t do: hit things overhead without fearing shoulder subluxation. Being careful when running because ankles could roll. Knee pain from contact while running. Standing up too quickly because blood pressure drops.
Could do: Circus freak show tricks! Twisting elbow to make it look like it was broken. Make the namaste hand pose, but behind your back. Able to scratch any part of my back.
Gotcha! Hmm, some of that sounds familiar to me. I know I used to be able to do the namaste pose behind my back trick when I was a kid, but I don't think I can (or my body strongly tells me not to try) anymore. Thank you!
> Medical professionals are not trained to diagnose EDS, for the most part. It is a rare condition. They are trained to think horses when they hear hoofbeats, not zebras so when you describe your symptoms, medical professionals look at you dumbfounded and start working on more common problems.
This is a huge problem. Doctors will only give treatments for common conditions. Doesn't matter what condition you have, whether or not you have the condition the treatment they want to give is for, or anything. You get the treatment they think the modal person with at least one symptom in common with you should get.
And if that doesn't work, they make no effort to see what's wrong. Once they've tried the solution to the most common kind-of-similar problem, and it doesn't work, you're incurable and should go bother someone else.
Small nitpick: estrogen often does wonders to alleviate common skin issues, and even absent those, makes "male" skin notably softer, stretchier, thinner. It's not new skin in the way you meant, but it is one of the hard-to-miss changes (to the person undergoing them, anyway). Although if I understand EDS at all correctly, this seems like it'd be an exacerbation of problems rather than a treatment for them? Wonder if that's a common thread among the dissatisfied...
It probably does work fine in the F -> M direction though, at least along this dimension of dysphoria. Seems about as plausible as other proffered candidate causes for rising gender divergence, though EDS is so much rarer than e.g. plastics that it can't be a primary driver. (Probably? Hunting for signal needles in noise haystacks...)
Aren't autism spectrum disorders generally correlated with mutational load? Does EDS show up more often in people on the spectrum than other genetic disorders with a similar number of mutations?
The answer I consider most likely and that will never be politically feasible to investigate is that autism is downstream of mismatched neurological correlates to gender. There is no reason to think all neurological dimorphism in all configurations always causes atypical gender identity, it could also cause autism or other conditions, and the correlation between the two could be because they are different degrees or configurations of the same underlying atypicalities.
"My guess is something like joint issues → poor proprioception → all sensory experience is noisy and confusing → the brain, which is embodied and spends most of its time trying to process sensory experience, learns a different reasoning style → different reasoning style is less context-dependent (producing symptoms of autism) → different reasoning style when trying to interpret bodily correlates of gender (eg sex hormones) → transgender."
As someone diagnosed with EDS in my 30s by a mainstream geneticist at BigHospCorp, with a Beighton score of 7/9 according to protocols designed to minimize false positives (just eyeballing, my pinkies look like they might put me at 9/9, but I don't get the 2 pinkie points with careful measurement), I'd say, yes, growing up in a body whose range of motion isn't as well-bounded away from injury as other people's is does make for more noxious, confusing bodily sensation to keep track of, which can be rather overwhelming.
Also, hypermobile joints → increased risk of repeated sterile tissue injury → increased risk of riling up your immune system basically all the time from accumulation of said injuries = "immune derangement" → cognitive and behavioral effects of immune derangement
And, if you're born biologically female, well... female fertility is inflammatory, menstrual cycles induce bouts of joint laxity, anyhow, which are particularly frustrating for those whose joints are already injuriously lax – and androgens have a GREAT reputation for building the muscle mass that helps protect lax joints!
Here were the protocols used for my Beighton scoring. Interestingly, the physiotherapist who measured me stuck rigorously to these protocols, while the geneticist just eyeballed them (though that may be because the physiotherapist's measurements were already in my file):
* Passive dorsiflexion of each fifth finger greater than 90°. This should be assessed with the palm and forearm resting on a flat surface, and is considered positive only if the fifth metacarpal-phalangeal joint (MCP) can be extended more than 90°. Ability to extend the tip of the fifth finger to a position proximal to the MCP is insufficient to be called positive if the MCP does not extend more than 90°.
* Passive apposition of each thumb to the flexor surface of the forearm. This should be assessed with the elbow extended and hand pronated.
* Hyperextension of each elbow greater than 10°. This should be measured with a goniometer, with the hand supinated, elbow fully extended, and shoulder abducted to 90°.
* Hyperextension of each knee greater than 10°. This should be measured with a goniometer, with the patient standing and knees fully extended.
* Ability to place the palms flat on the floor with the knees fully extended. This should be assessed with the knees locked in extension and the feet together, and is considered positive only if the total palm of both hands lies flat on the floor just in front of the feet. Slight flexion of the knees, spreading of the feet, failure to get the heels of the palms to the floor, and positioning the hands more than a few inches in front of the feet are common causes for false positive scoring of this point.
Perhaps the connection goes something like connective tissue disorder is related to peripheral neuropathy which is related to not feeling comfortable in your own skin and/or changes in the brain which is related to feeling trans?
The first time I heard about EDS was from reading Will Powers talk about seeing it in his trans patients, like you mention (I'm trans myself). I decided to run through the Beighton criteria myself and I seemed kinda... borderline? Though there are other types of hypermobility, in e.g. cardiovascular and intestinal, that I had that I found myself thinking if this was a thing with. It's been an interesting lens to see some of my health problems through though; I found out about mitral valve prolapse through learning about EDS, noticed my last EKG strongly indicated it and that it can cause the dysautonomia I have, and now I'm going to get an echocardiogram to see if I have it.
But also I worry if I am psychosomaticizing it, just by hearing about it? I wonder if there's data on base rates of hypermobility in the population.
There are data on base rates of hypermobility in public school children in several different countries, including Denmark and the UK. UK researchers suggest requiring a higher Beighton score from teens in order to count as pathologically hypermobile, and I believe Danish measurers advised that high Beighton scores aren't useful for predicting later problems until after about age 10.
If you're eyeballing your Beighton score and it seems borderline, there are procedures for reducing false positives. Howard P Levy of Johns Hopkins describes his somewhere here:
Since people often can increase their range of motion through practice, it may be possible for some to deliberately train to achieve a pathologically high Beighton score. But I suspect most people, including those who wish they had a neat, objective-seeming label to blame whatever problems they think they're having on, wouldn't be motivated enough to stick with the training required to hyperextend their joints far enough to achieve an "impressive" score. Plus, if someone did manage to train from a naturally low Beighton score to an "impressively" high one, that person has now *learned* a range of motion that increases risk of injury. I suspect that people with learned hypermobility are more likely to be dancers and gymnasts, people whose wide range of motion is regarded as signaling prowess and who aren't trying to injure themselves, rather than malingerers so hellbent on making excuses for themselves that they're fine with artificially increasing their risk of injury.
Not hypermobile, but MTF trans and diagnosed with dyspraxia as a kid. If there's also a dyspraxia trans correlation that would add weight to the proprioception idea
The title of this is phrased as a question, but I'm not sure it is intended to actually solicit guesses. The paragraph with all the arrows in it might be simplified and made more blunt as follows. "Misfits have fewer incentives for fitting in." I'm not sure you could call this a steelman of your more nuanced take. This would also explain why we don't see a representative sample of conventionally attractive people becoming trans. Phrased baldly like this, it might seem prejudicial, but it is a statement about privilege and how people respond to not having as much of it. Anyone can observe that maximally fitting in to gender stereotypes takes a lot of work that is easier to do if the incentives are good.
It's very tempting to make a model like this, and certainly many of the trans people I've met fit the "didn't do so well as X, am now more successful as Y, relatively if not absolutely". Or the other way round. I think this captures a large majority of trans experiences. There are lots of societal punishments for failing to conform to gendertropes - but punishments are only one half of incentives, generally agreed to be the less long-term motivating as well. Whereas the rewards are obviously weighted very differently for cis vs trans people!
The ones that haunt me are the few who actually were "conventionally attractive people" prior to transition, at least as seen from the outside. Some different mechanism at work there...
Well, hold up, that might be a bridge too far, or at least that isn't quite what I meant. What I was talking about is the lack of positive incentives. Not so much punishments or incentives for switching teams. I don't think most people who undergo such big transitions are motivated by the prospect of reward. But just to think about how hard people have to work at fitting in and being beautiful women or rugged, handsome men. If someone feels that she has absolutely no hope of achieving this, why would she continue to try? Her outcomes will improve if she stops and not because she becomes a successful man, but just because she is no more comfortable being who she is.
*Positive incentives = rewards, intrinsic motivation, social approbation, favourable cost-benefit ratios, surcease of pain/discomfort
*Negative incentives = punishments, ugh fields, social condemnation, unfavourable cost-benefit ratios, increase in pain/discomfort
Are there really a dearth of positive incentives? I can see a view of the world where succeeding at gendertropes is just table stakes expected of everyone by default, worth no plaudits for meeting the bar, but lots of demerits for failing. But also a view where all the benefits of such social conformity - in the form of avoiding the punishments, yes, but also "Halo Effect"-ing one's way through jobs, school, mating, etc. - are a big deal indeed, and lotsa incentive. I'm also persuaded by now that effort is consistently inefficiently allocated in Being a Beautiful Woman/Rugged, Handsome Man endeavors. Working smart versus working hard, and all that. (Which doesn't deny the existence of privilege under lookism either, obviously. Some lucky bastards are just Born That Way.)
Maybe I didn't quite grasp what you meant though, it was more abstract than I'm comfortable replying to and felt pretty sure I was biting off more comment than I could competently chew. Sometimes one just feels the need to respond to stuff in relevant-interest posts and goes looking for suitably-unembarrassing hooks to do so. Carry on.
There may be some confusion here between the rewards for being an ok average man or woman vs. the rewards for being extremely an extremely beautiful woman or masculine man.
Also, what counts as a reward can be personal. Women are expected/required to wear at least somewhat interesting clothes. Men are expected to not wear interesting clothes. People have definite preferences for how much they want to pay attention to their clothes.
I'll find the "contort your body in various horrifying ways" questions easy to answer: no. I can't contort my body even in non-horrifying ways. My motto is Treebeard's: "I am not very, hm, bendable."
Long covid can cause a lot more than just fatigue. Dysautonomia is pretty common, a lot of people get POTS after covid.
I remember another r/medicine post where some doctor wondered if Tiktok was giving all the kids POTS, kind of similar to the post you linked about "instagrammable illnesses":
Most of the doctors replying on there blamed social media and "sickfluencers". And then one medical student replied with an obvious alternative explanation: maybe we're seeing an uptick in POTS because we all just got covid and POTS is one of the symptoms of long covid. (it's also sometimes a side effect of covid vaccines, which we gave to hundreds of millions of people)
We have this perception of doctors from shows like "House" where they work tirelessly to diagnose complex diseases. But some actual doctors prefer to get on reddit and accuse their patients of faking symptoms?
I don't know. Surely some patients do fake symptoms. Is it common enough that a doctor should use that as a first guess? Or is it rare enough that a doctor should work thoroughly to exclude everything before coming to that conclusion?
I think POTS was rising well before COVID. I think it was so rarely talked about before that I'm not sure it was even mentioned in my four-year medical school education, but the past five years or so I've seen a lot of patients start talking about it. This could either be because it's finally being named/recognized/diagnosed correctly, or because it's a more popular psychosomatic diagnosis, or both.
I’m a cis female and as long as I can remember I’ve had hypermobile joints in my upper extremities and I faint if my head changes position too quickly. I just figured that was the way my body was. I’m about to go in for bone density testing because I’ve had 3 fractures in my arms and arthritis in my neck (I’m 41). It never occurred to me I could have EDS or anything similar until I took the ACX survey, and I hadn’t heard of POTS, but now I have some new questions to ask my orthopedist.
Or, at least you can test your heart rate, you might not be able to test blood pressure. There are some rarer forms of orthostatic intolerance where, say, your heart rate doesn't go up but you still get reduced blood flow to the brain.
"These results were a bit ambiguous, but I think overall they pointed in the direction of replicating the connection. 6/6 trends were in the expected direction"
Different effect sizes are different hypotheses. If one study gives a prevalence of 2x normal in the test group, and another study gives a prevalence of 132x normal in the test group, those studies are not sampling the same random distribution and should not be regarded as supporting each other just because they're "in the same direction".
e.g. if I flip a (unfair) coin a bunch of times and find that it lands heads 2x as often as tails, and you flip a coin a bunch of times and find that it lands heads 132x as often as tails, then either we're not flipping the same coin or there's some important difference in way we're flipping it that makes the results not comparable.
I'm a bit surprised that we didn't jump straight to increased genetic load as a common cause... thought maybe that's not helpful even if it were shown to be true.
I have a cancelable hypothesis (I'm not going beyond hypothesis on this) that being transgender is just a currently in mode manifestation of mental illness/depression/not being happy with yourself/etc.
It seems like throughout history people who've disliked their life have manifested this in different ways, whether it's becoming religiously devout, developing an eating disorder, deciding they have MPD, drugs, sucide, cutting (big when I was a teen), chronic lyme or whatever. I speculate that people who are severely unhappy look for a thing to do about it or way to explain it and often latch onto a trend. My speculation is that, if you are currently unhappy with your life and start looking around on TikTok or whatever, you will eventually find someone suggest that it might be because you are actually trans and some people go with it (20 years ago this might have been a pro-ana site). Since changing your life and taking up a cause are helpful in getting out of a funk, people who do this actually feel better and it can become self-reinforcing. For what it's worth, as outlets for depression/unhappiness go, deciding you are trans is seems like it is pretty harmless and, if it works, it works.
This would also help explain why there is so much suicidal ideation/attempts among trans people. It isn't that being trans makes you suicidal, but that being the sort of person who is suicidal makes you the sort of person who would settle on being trans as an alternative solution.
At this point I'm just putting this in the hypothesis category. I don't have enough information or enough qualifications to say it is definitely or even likely true, but is seems plausible to me. It may also not be the only reason people are trans. It may be that there are some people who are "actually" trans while others who come to it as a form of self-medication.
"For what it's worth, as outlets for depression/unhappiness go, deciding you are trans is seems like it is pretty harmless and, if it works, it works."
Which part of cutting your genitals off and (for teens) permanently interfering with your sexual development is harmless?
Beats the heck out of outlets like eating disorders, heavy drug use and suicide. Most trans people at least claim to be relatively happy with transitioning.
I appear to have no permanent issues from heavy drug use and I don't regret it at all.
I think I would regret it if I was now impotent or had undergone some irreversible operations (especially if, as seems to be true in many actual cases, the result was not all I had imagined).
Does it, though? Eating disorders don't usually last forever. Heavy drug use can be stopped with therapy. Suicide is obviously irreversible, but as you said, being trans doesn't replace suicide, and if anything might cause suicide.
I had an eating disorder in my teens and it stunted my height/growth, permanently screwed up some stuff about my hormones, and damaged my fertility. Took me many many years before I was finally able to be at peace with the fact that I'd screwed myself over that badly by my own choices, and that my life looks a lot different than it would have been (from things like the fact that I am a pianist, but my fingers will never be as long as they would have been, to the fact that it will be much harder and maybe even impossible for me to ever have kids).
"I speculate that people who are severely unhappy look for a thing to do about it or way to explain it and often latch onto a trend."
I suspect this is often true. I also suspect it's hard for a previously-overlooked real problem to gain recognition without going through a "trend" stage.
We won't achieve categories that carve reality perfectly at the joints, and when people make new categories to account for aspects of reality that ought to be acknowledged, there's no guarantee they'll draw the boundaries of the category well enough the first time. As people keep refining their guesses as to what the boundaries of those categories will be, some, especially those at the margins of those categories, will find themselves popping in and out of the category boundaries according to "fashion". And that's assuming the categories in question really do help us describe reality beter. Not all categories will, even assuming all categories are honestly intended to.
- Sex-atypical neural structures (even before the individual undergoes hormone replacement therapy and regardless of sexual orientation)
- Homosexuality, intersex conditions, and autism, each of which is related to hormonal abnormalities
- Having genes that relate to processing sex hormones
- Having a transgender twin (and, to an exponentially lesser extent, having a transgender sibling who is not your twin)
While I do believe that more than biology is at play here (the identical twin of a transgender person is usually *not* trans, even if they are far more likely to be trans; rearing influences gender outcomes in intersex individuals; the neural differences in question only exist on the group level) your account does not explain why people who feel like they're "really of the other sex inside" tend to actually be unusually biologically similar to people of that sex, sometimes in ways they might not even be able to detect. It's not just a matter of sex hormones -> gender nonconforming preferences -> transness since many transgender people have sex-typical interests.
My own (highly speculative) take is that, much like people are predisposed toward developing a particular sexual orientation, so is the case for gender identity. Some people are "obligate monosexuals" - their predisposition toward either heterosexuality or homosexuality is so significant that they're effectively locked in. Others are liminal, with weak innate drives that can be swayed hither or fro, usually up until the resultant orientation self-reinforces into less mutable solidity. Then there are folks who are essentially bisexual but are socialized into suppressing certain aspects of their drive.
Something similar might be happening with gender, with social forces pushing more and more liminal cases over the edge.
Not to open any cans of worms, but I know many people who read this comment section are not big on "gender ideology". An olive branch from a transgender person: the above does kind of imply that we should be very cautious about what we teach and how we socialize children. Triggering someone's latent predisposition via classroom exposure should be avoided. At least until after puberty since that's when gender identity usually (mostly) solidifies. Likewise, while I still do think some children can benefit from medically transitioning following a very careful assessment, some effort should be made to dissuade suspected edge cases to whatever degree that can be done without traumatizing them. Survivors of conversion therapy typically suffer immensely but surely there's a way to nudge someone without the brutality associated with past attempts at this. And if someone can't be dissuaded, so be it.
My impression is that we should be telling adolescent girls that their current moodiness is not a symptom of a fundamental disorder like having been assigned the wrong sex at birth but instead a byproduct of their being the Most Important People in the World: the only ones who can carry on the human race. It's a huge task, but we think they are up to it.
As an woman, telling a seriously depressed woman that her suffering is worth it to be a future baby vessel and The World Is Counting On You to procreate is absolutely not the correct approach.
Let's say we take 'transgender identity is solely caused by being mentally ill/depressed/unhappy with oneself' as a given. That then raises the question of 'why do so many of these mentally ill/depressed/unhappy with themselves people have stretchy skin and collagen?'...which just kicks the can down the road.
Might be as simple as p-hacking. If you check enough characteristics for any given group, it's likely you will eventually find one that is more common than average among them.
Also, I'm not saying there is no underlying genetics/cause, just that the gender dysphoria is a culturally mediated manifestation of that genetics/cause. Think of it how people used to see angels and now they see space aliens.
If it is p-hacking, why is hypermobility WAY more common in trans people? The studies Scott posted showed that trans people were something like a full order of magnitude more likely to be hypermobile. That seems like way more than just random chance or a lucky shot. It's possible that hypermobile people raised in Western culture wind up trans and if they were raised in a different culture they'd have something different happen to them.
Out of curiosity, have any of the studies on this controlled for autism? I know there is a strong link between autism and hypermobility and it seems like people with autism may be more likely to be trans.
I've been waiting a long time for the rationalist community to get their deft hands on this topic. I'm close friends with a number of people that fall under the same symptomatic umbrella of neuropsychiatric-inflammatory-metabolic issues. They have seen these patterns repeat enough to convince them of a common factor. Intuition and observation prime me to agree - but what REALLY gets me is this theory - https://www.rccxandillness.com/. Basically, the argument is that CYP21A2 mutations have a cascade of effects, most of which appear downstream of Krebs cycle dysfunction. I may have mangled that, but there's a whole lot more on there, and to my nonprofessional eyes it seems excitingly feasible. If you ever wanted a thorough, expert level theory that answers the direct question of your post with as much research as possible, this is it. Check it out and let me know what you think.
As I understand it, the argument is that people with a brain "wired for danger", due to stress in utero, are in later life more prone to hormonal inbalances and disorders, and the mental and physical consequences of these.
Sounds plausible, on the face of it. But shouldn't that mean these disorders are more common in areas with long-term conflicts, such as Palestine or Kosovo, or Iraq, and less common in prosperous and long-peaceful Western countries such as the US?
My impression is that the opposite is true. People in Iraq, for example, seem fairly relaxed and inured to stress, whereas many more people in western countries are neurotic bags of nerves!
edit: I'm not trying to dismiss the theory at all. It could be there are throngs of nervous Iraqis in my example, traumatized in the womb, but they avoid being out and about or especially being interviewed on TV! But I suspect there may be some extra ingredient that means not everyone whose mother had a traumatic pregnancy (or long drawn out birth?) ends up wired for danger. Perhaps it makes some people more placid and laid back than they otherwise would have been.
FWIW Londoner's during the blitz who experienced (and survived) direct bombing were found to be less anxious for the remainder of the war than those who had yet to experience any first hand destruction. It's as if the anticipation is far more nerve wracking than the actual experience.
Unlike in war torn countries, most people in the west do not experience direct conflict, but are plugged into the mainstream media 24/7 which is basically non stop 'fear porn'... a constant air raid siren...
Other factors could include ultrasound (more common in western countries I would imagine) and electromagnetic radiation from the ever increasing wireless soup we now live in. In many countries wifi is now being taken out of schools because it's making the children sick. France has literally banned wifi from primary schools. And crippling anxiety is one of the common symptoms (along with headaches, nausea, skin rashes, brain fog, depression, insomnia, fatigue and a feeling of being electrified). The effects of wifi/ cell phones on foetuses is too horrifying to contemplate. Laptops and tablets resting on the belly are the worst possible thing a pregnant woman could do. In China pregnant mothers must wear aprons with shielding to protect their wombs from EMF.
Studies of pregnant women's exposure to SMART meters (which are essentially mini cell towers stuck on the side of your house) have found a positive correlation to autism.
The explosion in wireless (microwave) pollution perfectly mirrors the explosion in 'trans', although the huge numbers of de-transitioners (many now bringing lawsuits against their doctors) are confirming that they are being misdiagnosed. Microwave pollution is causing 80% - 100% declines in insects, and now we are seeing birds dropping dead near cell towers too, as well as exhibiting behaviours such as inability to pair bond, build nests, lay eggs or do anything except fight or stare vacantly into space. In other words, microwaves have been observed destroying natural GENDERED behaviour in birds.
As mentioned, the banning of wireless on health grounds has already started. It's already a dying technology - completely unsustainable. The industry warns shareholders to expect an avalanche of health related lawsuits. Insurers won't touch wireless with a barge pole. And yet the industry and consumers alike are still addicted to this most toxic technology. Gen Z are the first generation in history to have been born in a microwave environment.
The relationship between Ehlers-Danlos syndrome and long covid could be the same relationship as that between Ehlers-Danlos syndrome and myalgic encephalomyelitis which could be due to strain on the spinal cord and brain stem due to neck instability. For more on this idea, see Jen Brea's Medium posts and Jeff Wood's website: https://jenbrea.medium.com/https://www.mechanicalbasis.org/mystory
Compare this with primary ciliary dyskinesia, which causes your bronchial cilia to not work, causing various respiratory problems. And then, (exactly) 50% of the time, it also causes all of your internal organs to be mirrored so that your heart is on the right and your liver on the left, etc. Because evolution is a mad scientist and it does things that make no sense.
I read this and immediately thought that if these conditions, and others are linked to elevated levels of estrogen, it is exactly what I'd expect to see based on what little I know about Bisphenol-A and pseudo estrogens. I can't claim special knowledge, and would be happy for any corrections, but my understanding is that chemicals like Bispehnol-A enter the body in a variety of ways, trigger endocrine all kinds of inappropriate endocrine activity, operate at very low dosages (unlike, say a carcinogen that might require continued exposure) and have been in every US citizen for about the last 30 yeats.
Obviously I wouldn't want to simply explain away all of < current year> ills with a single chemical, yet, the thing about BPAs that always stuck with me was how impactful they were at micro doses and how little information on the impact on humans existed. Frankly, it still feels like a scoop, but maybe I'm just waaaay out in left-field.
(FWIW, I did my research a few years before I heard Alex Jones talking about 'gay frogs,' but this is that same basic issue)
100 years from now the healthier happier post-bisphenol A Americans of 2123 will carve onto Mt. Rushmore the face of Alex Jones warning us about the gay frogs.
Admittedly, I didn't see that coming.
But, now that you mention it, it sounds pretty plausible.
Just because you mentioned CAH, I got the results today from a genetic test I took because me and my wife are going to start trying to have a baby soon, and the only genetic disorder I tested positive was as a carrier for CAH. Does simply being a carrier affect me(a man) at all?
I'm not worried yet about passing it to my kids, my wife's test hasn't come back, but based on the distribution in Ashkenazi Jees, there's only a 1/250 right now that our kids get it.
Scott, we love your work because you're committed to following the data, wherever it leads.
You wrote "All Instagrammable conditions cluster together among Instagram users; if transgender is also Instagrammable, that could explain the finding."
Bingo. You won't get to the bottom of the EDS <-> Transgender <-> Autism connection without considering social contagion as a cause for transgender self-identification, particularly among autistic girls.
This is, of course, against the trans orthodoxy. Will you follow the data wherever it leads?
Abigail Shrier's book 'Irreversible Damage' might provide a good summary of the issue and starting point for your investigation.
"You won't get to the bottom of the EDS <-> Transgender <-> Autism connection without considering social contagion as a cause for transgender self-identification, particularly among autistic girls."
Also, while I am here, I met you (scott) in austin last year and you said that you recognized my name but neither of us could figure out where, and I'm pretty sure its because of a comment of mine on your essay about paul fussel's "class" that you featured (but I think you got my name wrong and called me "Drew Schlomo" or something lmao)
Lies, damned lies, statistics. And data. None of the above explanations. Or all of them. Or some. But only in the presence or absence of Factor X. It just kills us to see a pattern and have no explanation. We lack the patience for seeing if patterns persist over time and, if they do, to do the heavy lifting to get enough rigorously developed data into enough carefully applied analyses. The fundamental problem we have in coping with randomness is that randomness is chock full of patterns and we are all descended from a very long line of ancestors who lived long enough to be our ancestors on their ability to detect patterns.
For the avoidance of doubt, I am not poohpoohing the existence of the phenomena or the associations with trans people or other classifications. What I am doing is pointing out there always are limits on what we can know and understand. Part of living the evidence based life is the ability to say “I just don’t know enough to say one way or the other.” And then go on to the even harder part of treating doing nothing as a no more intrinsically valid choice than doing something under uncertainty.
The correlation between Long COVID diagnosis and LGBT seems obvious enough to me. There's a large gap in perception of the existence of Long Covid between left and right political camps. And far more self-identified queer people on the left than the right.
Throughout the pandemic, conservative news sources downplayed Long COVID while liberal news sources hyped it up. Anecdotally, whenever I've discussed the topic with liberal friends they've always taken it very seriously... in the more extreme cases, some kept wearing masks long after the vaccines came out due to fear of getting Long COVID. Whereas whenever I've brought it up to conservatives, they've all been skeptical about it. Most of them think it's been exaggerated and over reported; one I interacted went so far as claiming that there was no such thing, and it was all just misdiagnosis.
I guess the ultimate diagnosis is up to the doctors, but seems much more likely that someone on the left would seek diagnosis of Long Covid after experiencing symptoms, while someone on the right would interpret the symptoms differently... either not reporting them at all or leading the doctor in some other direction.
This post caught my attention because I happened to meet a trans woman with EDS and hypermobility about 2 months ago, which was the first time (and only time) I've ever heard of EDS.
Her limbs keep popping out of their sockets and need to be reset, and all of her fingers can bend backwards. I'm trans myself, and have thumbs which can bend backwards, as well as a jaw that can open beyond the normal range.
>I guess the ultimate diagnosis is up to the doctors, but seems much more likely that someone on the left would seek diagnosis of Long Covid after experiencing symptoms, while someone on the right would interpret the symptoms differently.
Alternatively, leftists manifest those symptoms at a higher rate due to social contagion.
Given how my own autism has driven me to become obsessed with various lifestyle changes, often lasting years, it wouldn't be surprising to me if the autism correlation with transgender population was sometimes causal. I could see myself as a younger man becoming fixated on the fact that I *could* be a woman and pursuing hormone therapy purely out of curiosity.
I have a diagnosed "marfans-like genetic condition" and issues with pervasive nausea. I was recently watching a talk on functional nausea, and apparently, they're finding a correlation with EDS/connective tissue disorders as well. Functional Nausea is an interesting condition that seems to intersect between gut and nervous system, since vagal nerve stimulation and hypnotherapy are both reportedly effective, while drugs are generally not.
I had been dying to know what you were going to do with the hypermobility question!
I’m cis-het female with diagnosed but not specified hypermobility. I was always double-jointed and filed this under “stupid human tricks”. And then about a decade ago I did something weird to my neck that was bad enough to keep me going to doctors for a few months. All of them prescribed stretching. Eventually I found one who watched me touch my ear to my shoulder and told me to stop stretching. He actually compared me to “a piece of overcooked linguine.” It worked- I avoid stretching and get hurt way less than I used to. My sexuality and gender identity were never anywhere near as flexible as my tendons.
I’m guessing hypermobility is way under-diagnosed. I wasn’t the only double-jointed kid in the cafeteria, but maybe I was the only one who torqued her own destabilized neck hard enough to seek help. I have to cut the doctors some slack, since most times I came in unable to move my neck *at all*. Suggesting stretching is also probably a horses-not-zebras thing, since it helps the vast majority of the cases that show up in your office.
But I just remembered the only kid in high school more double-jointed than me…is trans! I’m surprised I remember this, but 210 degree elbows do make an impression.
As an alternate explanation, we should consider the fact that maybe brain development and connective tissue are more related than one would expect. For instance, “FXS is an X-linked disorder due to a full mutation of the CGG triplet repeat of the FMR1 gene which codes for a protein that is crucial in synaptogenesis and maintaining functions of extracellular matrix-related proteins, key for the development of normal neuronal and connective tissue including collagen. In addition to neuropsychiatric and behavioral problems, individuals with FXS show physical features suggestive of a connective tissue disorder including loose skin and joint laxity”
So we already know that abnormalities in extracelluar matrix formation can lead to both abnormal joint function and atypical neurological development. And it’s easy to imagine how neurological differences could affect a person’s gender identity. This strikes me as a much more parsimonious explanation for the link between gender identity and hypermobility.
I concur. It's very common for factors that relate to psychological abnormalities to manifest in external bodily traits. Dark triadism correlates with certain facial features (though which with what is still contested), homosexuality with others, and so on.
I may be way off track here, and I realize that I sound like a boomer, but if propioception is so important for establishing neurotypical patterns - could it be that changes in how children are raised (less time on playgrounds, more time glued to screens from a very young age) do have an impact on the (apparently increasing) rate of ASD/ gender-dysphoric/ body-dysmorphic/ other neurodivergent issues observed in young people?
Thinking back, I'm amazed at the thousands of hours I spent as a child (born late 1958) doing sports activities, such as bouncing a ball off a wall and catching it over and over.
I would have made a fine nerd, but I didn't have a computer.
I know you asked in seriousness, but - if only there were a way to extrapolate full-stack proprioception from just one's thumbs. Because the younger generations are at least incredibly skilled at phone-related gestures. I got lots of playground, sports, etc. time to develop the real deal as a Millennial, but am still terribly embarrassingly hunt-and-peck at texting. Touchscreens in general are honestly enraging, give me a real mouse and keyboard any day...
It's a shame Google Glass-type AR hasn't taken off still, or that'd be another angle to correlate on. VR doesn't have the market penetration yet - I'd expect such users to be too confounded for appropriate comparisons to general population. But if it were someday possible to get an equivalent amount done without even trivial hand gestures...? (What about voice assistants?)
I struggle to see why you need to invoke proprioception and brain stuff here. Some people's physiology kust makes their joints bendier than others. If you killed me and a hypermobile person (please don't) so neither of us was propriocepting anything any more you would still be able to bend their joints further than you could mine. Perhaps you'd find that their ligaments were longer or had different stress-strain curves if you took the time to autopsy us.
Isn’t it a feedback cycle? I’m hyper mobile, and while I didn’t think much of it for most of my life, it probably contributed to my general lack of confidence in and connection to my body.
I like my body and for the most part it works just fine, but I’ve always been mystified by how some people can, say, run mile after mile without wondering if the next footfall will land. Personally, I’m never sure. When I was in my formative years this self-image as clumsy and accident-prone was definitely part of my identity, and in hindsight interfered with me feeling truly feminine on some level. If gender really is a complex constellation of factors, feeling even subtly ungainly, weak or broken could be one of them.
What do you call the opposite of a disorder: when you are way above average in flexibility in a good way? In golf, mid-century great Sam Snead could touch his wrist with his thumb and kick the ceiling with his foot. The term they used then was "double-jointed." Similarly, John Daly is a strong fat guy who looks liked he'd be muscle-bound, but he takes an extraordinarily long, graceful backswing and was the longest driver of his generation of tour pros.
Both lasted a long time: I attended the L.A. Open in 1974 when Sam Snead made a final round charge and wound up finishing second at age 61. (Later that year he finished third behind Trevino and Nicklaus in the PGA major championship.) Everybody figured Daly would have drunk himself to death by now, but he's still around, playing on the Senior Tour.
> What do you call the opposite of a disorder: when you are way above average in flexibility in a good way?
Mr. Snead ALSO had hypermobility...he was just lucky enough to not be hindered by it. He was also probably fairly strong, physically, and that helped him a lot. There are people with hypermobility that are more or less unaffected by it, and while generally speaking it is a mild hindrance, it does confer certain advantages.
I responded "no" to the hypermobility question (not even "now you mention it...") because my joints in general aren't over-flexible - I think they're actually below averagely flexible - and I've never dislocated a joint. But I do have some "double-jointedness" in my hands. Like the respondent you quoted, I can push my thumb to touch my wrist without discomfort, and I can bend my finger joints backwards (even without the use of the other hand) to freaky-looking angles.
I think it's probably still more accurate for me to have responded "no", because finger hypermobility isn't going to cause any weird proprioceptive effects growing up. OTOH, if you're interested in genetic or epigenetic effects, then hypermobility in just one part of the body could still be relevant.
I don't know how common it is for people to have very localised hypermobility-like symptoms. But if it's fairly common and some of those people answered yes and some answered no, that might dilute the usefulness of your results. So it's good that you're going to do a follow-up that asks about separate joints separately.
(I'm a cis woman, and probably autistic in the Asperger's sense.)
One more data point indicating a correlation between all three issues (though I am a "mild case" for all three).
1. Gender: I am a biological female who identified as transgender a few years ago and did everything, including social transition, except hormones and surgery. The "trans identity" never really resonated though, and eventually I ran a cost-benefit calculation and decided that transition was a net negative. Accordingly, I am no longer taking steps to change others' perception of my gender, and would have ticked "cis female" in the ACX survey. Some degree of what is referred to as "gender issues" in another of your posts does persist (e.g. I have a doctor's appointment next week to sort out whether my current insurance would cover chest reduction surgery). (-> Maybe the survey should be more granular?)
2. Autism: I'm not sure I'd fit the diagnosis, but I am at least pretty far to the autistic end of the spectrum. I can run my own life without assistance and have learned to behave neurotypically in most contexts, and at no point I would have rated my symptoms as severe. I do a lot of things that seem to be typical of autistic people (e.g. I used several blankets to make them heavier for years, long before I ever heard that weighted blankets are a thing, run around in my thermal underwear in my home basically all the time, and actively trained my facial muscles for to make my face seem more mobile and facilitate social interaction, in an experiment which I consider a success.)
3. I wouldn't have thought to connect it before this morning, but after reading your post it seems at least noteworthy that I'm also diagnosed with hypermobility syndrome. I went to see a doctor with back pain and he observed how far I could reach in a few stretches, then gave me his diagnosis and told me I could fix the issue with strength training. I did, and it worked. I'd known I was exceptionally bendy through Aikido practice, but hadn't thought twice of it. This bendyness predates the gender issues.
I've never been more than a very occasional user of social media, and I do not think my overlap with the special snowflake cluster is especially high. (It's nonzero though, FWIW.)
Age: 20.
I think my mutational load is probably high, and think this might be related to the fact that my mother had me at 40 after several miscarriages. The only alternative theory I am able to generate is that my overlap with the special snowflake cluster is higher than I think, but I do not find it very convincing.
I'm interested in what is up with this, and I'm very happy to answer questions to help gathering data points!
Perhaps you are aware of this, but just in case you're not: When on the receiving end of a Aikido technique or immobilization, make sure not to relax completely! In my understanding, by wringing hands, arms and shoulders we train our muscles to work in reverse, something akin to breaks if you get what I mean. You resist without clenching up. Training this way you'll end up with strong, yet supple joints. Not doing it will risk overextending the joint an injuring it.
I likewise *could* count as a "mild" case of all three, though that I could doesn't strike me as important.
1. Gender: When you say, "eventually I ran a cost-benefit calculation and decided that transition was a net negative," I can relate, in that I seem "cishet by default" because the costs of being otherwise seemed to outweigh the benefits to me. Lifelong need of maintenance asthma medicine leaves me acutely aware of the financial and logistical burdens of prescription dependency, and I wasn't eager to add to that burden by reversing my sex-hormone profile. Learning that it's hard to take monastic vows (or otherwise be accepted in more-conservative Christian circles) if you're trans also took the luster off transitioning for me. Having been so easily dissuaded from transitioning suggests I must not have had a strong need to?... Anyhow, I only have so many fucks to give about any kind of sexuality (sex isn't the only important kind of eros, dammit!), and I don't regret going the traditionalist route of becoming a wife and mom because – well, they're my husband and kids! I love them! – even if I find the experience of "motherhood" and "womanhood" rather weird :-)
2. Autism: My eldest had a speech delay, is just starting elementary school, adopts obviously hypermobile postures, and the school psychologist just requested my approval for autism testing, which I gave. I'd never done any "are you autistic?" quizzes before or pursued an autism diagnosis. A neurologist I met only once for an incidental test told me to get checked for autism, but the medicos who knew me better told me they could already tell autism wouldn't be my problem. That said, with news of my child, I took some assessments online with a decent reputation for reliability, and my scores were near but somewhat below the median for "women classified as autistic". But, I kind of don't care?... Would calling myself on the autism spectrum (and even really being on it, medically) tell me any more than I'm a bit weird, which I already knew? Would the label help me get information to improve myself and my lot in life – and if not, what's the point?
3. I have an EDS diagnosis from a geneticist, though based on physiology alone rather than an identified genetic marker. I'm reasonably confident I did my due diligence as a patient by subjecting myself to a diagnostic process for EDS designed to reduce false positives. Strength training helped me for a pretty long time, but I managed to get some pretty ridiculous orthopedic injuries while burly anyhow. After the added joint laxity of pregnancy, I find it's harder to get strength training to "take" like it used to. I'm at greater risk of injuring myself badly enough to enforce the kind of rest that leads to *even worse* deconditioning now. Some of that's normal aging, of course – but it's like aging 20 years ahead of schedule.
I stay away from any social media bigger than a blogger's comment section. I'd also describe myself as having low-though-nonzero overlap with stereotypical "special snowflake" characteristics.
Regarding 2: I didn't regard autism as something I might have (because of reasons) until some time early this year, when I found an online article describing some of the lesser known stuff (specifically, the visual imagery thing) and a lot of pieces suddenly fell into place. The main benefit in my life has been that googling stuff like "social skills aspergers" yields result that are actually useful for me, like this one: https://docs.google.com/document/d/1y3jXO9k4trCUxN26b-0flvbUZCrQu7Azx0w1kPdYCns/edit#
Knowing what to look for has been great for making focused efforts to solve problems.
On the other hand, increased awareness of certain issues (mostly sensory stuff) has made some of them worse. I'm not sure what to do about that. Furthermore, I had something like an anxiety attack a few days back, which I think came from exposure to stories about people who I now had mentally categorised as "similar to me" who have issues like that. When I was in similar situations before, I'd get e.g a clenching feeling in my chest which I could successfully ignore. Now there was also brief shaking and crying. This is a development I absolutely do not want and I am looking for ways to reverse it.
Regarding a diagnosis, I do not want any. In my country of origin it's classified as a disability, and for idiosyncratic reasons that would be a net negative in my life right now. I wish it weren't because having an official-looking paper would make it easier to talk to my family about it, but it's not a priority right now.
Regarding 1: How did you meet your husband? What would you recommend to someone looking for a partner? Would you say it's preferable if both of you have autistic traits, or is it better if one is neurotypical?
I met my husband by a series of coincidences, first landing myself at a math department Christmas party. A graduate student I'd known my freshman year of college was now a professor there, and had brought a friend. Some guy. This guy and I got into an extremely dry argument over some extremely inappropriate topic, which I promptly forgot about.
Soon after, the professor persuaded me to try out for a large arts organization. I made tryouts and joined, but I wasn't enjoying it. I'm a fairly talented musician, but prone to stage fright and easily confused by the sheer bureaucracy of large arts organizations. Still, I knew I had few opportunities to meet many people sharing my interests, so I kept attending, once muttering to myself on the commute to rehearsal, "I'd better get a husband out of this for it to be worth all this hassle."
Well, I did. The same guy I'd argued with at the math department Christmas party.
I didn't show up at rehearsals to flirt – that is, while I tried to dress nice for rehearsals, my goals were limited to, "Show up. Don't attract negative attention. Try to pretend you're normal." Positively trying to flirt or dressing not just nice but "skimpy" seemed more likely to attract negative attention if I tried it. So I didn't try. I just kept showing up.
I'd recommend simply showing up for group activities you're interested in as a way of meeting a spouse. As long as all you've got to put up with is hassle, not actual abuse or anything like that, the hassle could be well worth it – even if you don't snag a spouse: pursuing a shared interest often is. I have no tips for online dating since I luckily avoided it.
My husband is... also a bit weird. He was profoundly dyslexic as a child, but got over it. Maybe he'd be classified as autistic if he were a kid growing up today? His obliviousness to ordinary household concerns can be a bit frustrating, but I suspect he and I frustrate each other less than most spouses do. He's older in years than I am, but my age or younger if measured by decrepitude :-)
That's a very hope-inspiring story, thank you! It reads like something that could happen to me, and it's congruent with the plans I already had. So, thank you.
I admit that what I described as "hassle" often felt nearly intolerable at times. I spent a few rehearsals far more focused on keeping myself together than on the music – but I could make up for that "missed" rehearsal time by practicing at home.
Despite some real unreasonableness and unfairness in the way the organization was run, and no matter how bad I sometimes *felt*, "hassle" remains a better description for my frustrations than, say, "abuse" or "injustice" would. It helped that my soon-to-be husband shared my frustrations, though they didn't ruffle him as much as they did me. He tended to regard the hassles as more like injustice, if only petty injustice, but because they didn't rattle him as much, he also had more luxury of seeing them that way, if that makes sense. The easily-rattled, especially newbies, might make the least-convincing advocates for reform, if reform is needed. Anyhow, managing myself was a big-enough job without my volunteering to manage others, even if I could have made reasonable points in doing so.
That makes sense! Unfortunately, the no-longer-newbies often seem to be no longer willing to advocate for reform. I don't think I'll be able to avoid dealing with that kind of issue in the future...
This is somewhat of a repost from old SSC stuff, which I remember reading back then and feeling kinda...FOMO I guess? at not having this particular statistical mobility correlation...autism, check, +1 status bonus to Illusion-related checks, check, weird sensory issues, check. But I only have good twitchy Reflex saves, not full-out high bendy Dex...I'm no Beckham. Constant quip when someone compliments "nice reflexes!": "if I really had good reflexes, I wouldn't have dropped [thing] in the first place!"
Also, to poke an anecdotally small hole in Theory 4.5, I have above-average <s>passive Wisdom</s> <s>Perception</s> er, proprioception. Even if there's some confusion in my brain about what the exact body-map shape of the meat-territory is, it's very not confused about __where__ those parts are, both in absolute spatial terms and in relation to other objects. (Fun practical practice: try dodging through doorways as they close without touching them. Except revolving ones, those are dangerous.) There's a discrete "collision detection module" that takes extra effort to dial down or turn off - unlike, say, the "social graces module", which I often disable to conserve cognitive load under duress.
(By contrast, your old take on Autism As Sparsity Prior felt pretty correct to me, for whatever degree/causal connection the two things are entwined. You fit the mental model to the data you have, not the data that actually exists...)
Anyway, hello to the other (floor) 275 or whatever of us out there. I remain both impressed and also saddened that I tend to learn more tractable and interesting things about transness from Scott than from actual activists or capital-R Researchers. Here's to wishing once again for better data about our strange corner of human possibilityspace...
I was told I'm hypermobile, but I didn't think it would impact my life much. Turns out it makes you resistant to local anesthetics and I found out the hard way in 2019 by requesting an abortion with only localized anesthesia (since I was curious about what it would be like and didn't want to miss anything). I was deeply interested in trying to figure out why afterwards and my current working hypothesis is this: https://www.hypermobility.org/local-anaesthetic
I also recently discovered I'm a transmasc enby (instead of agender like I previously held as an intellectual position) who does not feel gender dysphoria (possibly due to dissociating it away since age 13), but feel an insane amount of gender euphoria when being seen and treated as more male (despite my dislike and rejection of gender roles and expectations about "male" behavior). This article is making all sorts of connections for me about why I'm a medical anomaly
A lot of other things, such as left-handedness at birth, made it so that it's a mistake for me to assume that the "average" outcome from studies (that usually exclude left-handers) would be the same outcome for me.
I find the information about local anaesthetics fascinating - I have pretty hypermobile joints and I once needed 3 injections to numb my mouth sufficiently for a root canal (the dentist was quite happy to apply them, just a bit confused as to why I could still feel them poking around after the first, never mind the second). It's not been a problem since, but something worth bearing in mind - thanks for the link ^^
There's an absolute flood of self-diagnosed EDS on social media recently, especially among the 'spoonie' community. Many of them feel it is a chronic pain disorder, and complain of back pain, use wheelchairs and try to get surgery for it. The few real cases I have seen (and it is a rare disorder) are not characterised by pain at all. There's plainly a social contagion going on.
EDS isn't damage, but rather vulnerability to damage. Some with EDS don't prematurely accumulate damage, and the pain that comes with it, but others do. Chronic pain is a common symptom of EDS, and pain is understandably a pretty powerful motivator for seeking diagnosis.
I find it plausible that some "sickfluencers" attributing the pain they claim to "EDS" are inaccurately self-diagnosing (or, rarer, though possible, have convinced a sympathetic doctor that EDS might be the problem despite other signs not being there). But the heuristic "People complaining of pain must not have EDS, because I've seen EDS without pain" is a bad one.
To synthesize a little: if gender divergence is a function of emotional and hormonal responses occurring independently of bodily proprioception, what would we expect from the a generation for whom intense, interactive and interpersonal, experiences mediated entirely by screens were available during puberty?
Is it a misguide hypothesis to suggest that proprioceptive wiring combined with exposure and embrace of screens during puberty can un-anchor gender identity from sex? Is it too obvious?
Obviously books and television can do the same thing, but not quite in the same ways. I would still expect higher rates of transgender and bisexual identity among book lovers.
It occurs to me the importance of “wiring differently than society” is more than just PC lip service. Eg, people with female bodies who get an outsized sense of emotional reward and excitement from traditionally “male” physical activities would be over represented among non-hetero sexualities for sure, and non-cis gender identities perhaps? But I suspect people would be less likely to say that being especially physically agile or fluid moving or even competitive is a “mis-wiring” with the valence some of us still have to work to avoid when applied to autism or gender divergence.
The people who suffer from social contagion of gender dysphoria are going to suffer from comorbid social contagions like EDS. I also think there trans-genders whose etiology is much less attributable to social contagion, and with this population It would be really interesting to study theory 4 RE proprioception, neuro divergence and autism comorbidity.
The problem with studying this is it’s going to be hard to disentangle the bona-fide transgenders and bona-fide EDS’ers from the social contagion ones, and so consequently they’re going to completely dilute your sample away from non-functional neurological disorder effects.
As a (cis) person with EDS, this topic is interesting to me! I want to point out some interesting things about the Najafian paper.
1) It found an EDS rate of 2.6% among GAS patients, which as you point out is ~100x higher than among the general population. If the rate of CAH were also 100x higher, that would be 100/15,000 = 0.67% - not equal to 2.6%, but a lot closer. Let's also consider that Tenascin-X (TNXB) mutations are only thought to cause some subtypes of EDS: hypermobile EDS (the most common type which also has several other causes - this is the one I have) and "classical-like" EDS which isn't very well-defined. But TNXB mutations only cause a small percentage of hypermobile EDS cases! So from the numbers it looks pretty plausible that linked mutations in the hydroxylase gene complex (implicated in CAH) and the TNXB gene could be responsible for a substantial proportion of transgender people with EDS - though not necessarily for most transgender people or most people with EDS.
2) The authors found the rate of wound healing problems was 28% in EDS groups versus 47% in control groups. This is *super weird*, because most forms of -Danlos syndrome are associated with *worse* wound healing, to a greater or lesser degree. Folks like me with hypermobile EDS often don't have any notable issues with wound healing (this is true for me), but I've never seen any suggestion that we have *fewer* wound healing issues than the general population.
I support asking about Beighton scores on the next ACX survey. Anecdotally it seems like a good, if sensitive, measure - my EDS is quite mild and doesn't affect my life in meaningful ways (though if I'm unlucky that may start change as I enter my 30s), and my score is still 8 (can't touch my palms to the ground).
Autistic and trans people tend to carry a high load of trauma and chronic stress due to being marginalized. So they tend to struggle with loneliness and alienation, and that leads them to gravitate to online socializing more than other populations. As a result they’re exposed to social media trends more than others. This would explain increased awareness of diagnoses like EDS that are highly publicized in social media.
And since there is a well known correlation between anxiety/stress and chronic pain, many people in these communities suffer from chronic pain. So they’d likely be especially interested in anything they encounter on the internet that might be an explanation for their pain.
While I’m sure some non-zero percentage of self-diagnosed “EDS” is the result of hypochondria or malingering, it’s also likely that many people genuinely suffer from this condition and only became aware it was a medical diagnosis through the internet. It’s much like autism in this way. There are many people out there - especially women - whose autism diagnosis was missed in childhood, and as the result of greater awareness through the internet, they’ve gotten diagnosed and have gained life-changing resources to manage their condition. Same with trans and gender dysphoric folks.
Sure, you get some trend followers and grifters who latch on, but the overall societal impact is largely positive. (Sorry to all the grumps out there, but people being annoying on the internet isn’t a real social problem.)
For what it’s worth I was diagnosed (pre-internet, by real doctors) as high-functioning autistic; I’m also non-binary, biologically male. Have always had very high joint mobility but can’t do a lot of the more extreme “EDS” tricks you see online, partially due to a lot of work I did to strengthen my joints and increase proprioception through exercise and physical therapy. I attend yoga class regularly and I tend to be more flexible than ~90% of the men and ~50% of the women, depends on who’s in the room of course.
I’d be even more flexible but I spend too much time sitting and that restricts mobility in my hamstrings and low back. Time to stop writing and get up, lol.
Not to mention that many cisgender men with gynecomastia get breast reductions, often when they’re below age 18 and at the instigation of their parents, and nobody bats an eye about this.
There’s probably even some nonzero number of transwomen who had this done and later wished they had that extra breast tissue. But there’s no media campaign about them for some reason.
I would think bigger breasts would be bad for athletic performance…oh the irony if top female biological athletes started getting breast reduction surgery to increase athletic performance! I just Google searched it and a Scottsdale, AZ doctor specializes in it. And it quotes Ronda Rousy saying her breasts are an “opponent”!
Assuming the autism spectrum is somewhat relevant to this discussion, I would like to ask a question related to it.
As I understand it, autistic people find it hard to impossible to form second order representations. In social situations, this manifests itself as finding it hard to see things from other peoples' standpoint or putting oneself in their shoes.
Autistic people thus tend to appear distant and detached, sort of in their own shell, and become disproportionately distressed by changes made around them which their condition renders more or completely unpredictable, due to not understanding or even being aware of other peoples' motivations.
But does this handicap extend to more abstract concepts? Would someone on the autism spectrum be more than averagely likely have difficulty grasping and constructively using certain mathematical or programming concepts for example?
I would guess they might find it hard to get their heads round pointers in programming languages, such as C/C++. They might also have an aversion to forking child processes, or synchronizing multiple parallel processes. As for functors in category theory, or cohomology in algebra and topology, I should think someone on the spectrum would want to run a mile!
But I haven't heard of any such specific difficulties encountered by people with Asbergers. If anything, my vague impression is that they are more than commonly adept at mastering and using these concepts, as many a STEM Phd on the spectrum might agree.
I think that people on the spectrum who have learned to function socially have to spend a lot of time concentrating on forming workable second-order theories of human behavior, because it doesn't come to them naturally. That is my experience anyway, along with that of many others.
This is often a cause of the introversion people on the spectrum are known for; they are not always detached from the situation, in fact they may be intensely observing the situation and developing a mental model of it. (Either that or they are exhausted from all that mental effort and need to take time to retreat and recharge.)
My pet theory is that people on the spectrum have a lot of practice developing cognitive models of interaction between entities in a deliberate way, because they need to do this in order to function in society. And this meta-skill can often make someone a very talented and effective programmer.
On the other hand neurotypical people were born with a greater intuitive understanding of human interaction, along with better proprioception, and so they don't need to exercise that particular meta-cognitive muscle just to complete basic life tasks.
"My pet theory is that people on the spectrum have a lot of practice developing cognitive models of interaction between entities in a deliberate way, because they need to do this in order to function in society. And this meta-skill can often make someone a very talented and effective programmer [or other STEMlord].
"On the other hand neurotypical people were born with a greater intuitive understanding of human interaction, along with better proprioception, and so they don't need to exercise that particular meta-cognitive muscle just to complete basic life tasks."
Makes sense to me. I don't have and am not seeking an autism diagnosis, but if I answer apparently fairly-reputable screening questionnaires, I'll fall into the "probably autistic category" (and I do have bodily weirdness consistent with EDS).
For me, seeing things from another's perspective was always very important, a basic reciprocal ethical demand, but also always cognitively *effortful*. Rather than "feel through" unspoken social rules, I had to "think through" why some things might be fair or reasonable, and other things might not be. I'm still rubbish at unspoken social rules that just don't seem to have an ethical *point*. Additionally, the careful thinking math involved (I was a math major) felt like an ethical duty to me.
We are surrounded by a dense network of implicit social messages and expectations that people on the autism spectrum typically struggle to grasp as readily as other people. The deficit ranges from severe to slight impairment - hence "spectrum" - and people's capacity to correct for it varies. A popular metaphor that seems to resonate for a lot of autistic people who are able to articulate their thoughts is that it's not on the hardware, so they have to make up for it on the software. People with this deficit who are able to effectively cope end up very deliberately studying social rules that most people just intuitively grasp to be able to keep up.
This act of conscious attention has advantages and disadvantages. People who are really good at it can come across as socially adept, if perhaps a bit robotic. Data from Star Trek: TNG used to be an autistic icon and is a good metaphor for this type of person.
Autism is an extremely heterogeneous "thing" that can't be summed up in a single sentence. There is no single characteristic shared by every autistic person.
The specific symptom you're describing - being bad at cognitive empathy - is quite common but not even close to universal. And a minority of us seem to be unusually *good* at it.
Re: your hypothesis about programming:
I personally use the same skills for predicting human agents, computer programs, fictional aliens, physical phenomena, etc. Questions of the form "How would a [rural Aghan villager/World of Warcraft API/sentient energy being/spherical horse] react to a [foreign soldier asking questions/command to display a texture/planet covered in meat-based life forms/gravitational force]?" are all handled by the same process: spin up a "virtual machine" in my head and try to simulate it.
I get the impression from my interactions with non-autistic people that this is *not normal.* Lots of neurotypical people seem to be pretty good at predicting other neurotypical people but *terrible* at simulating almost anything else. Many of them seem to struggle with the general concept of a hypothetical question (questions of the form "how would you feel if you were X" get responses like "I'm not X").
This isn't a neurotypical thing, exactly; lots of autistic people are also really bad at abstract thinking. My suspicion is that the abstract reasoning/mental modeling dimension is mostly orthogonal to the autism dimensions, and most autistic people's difficulty predicting/understanding other people is explained by something else.
Having autism cover such a huge range of issues is a huge disservice to the low functioning autistic people and their families because people think they have interacted with autistic people when they most likely haven’t interacted with low functioning autistic people. Did you watch the Academy Awards?? Brandon Fraser quit acting in part because his oldest son is low functioning autistic which is very disruptive to one’s life and obviously career. So his two other sons were in the audience but obviously he can’t bring his low functioning autistic son to the Academy Awards. So you never see pictures of him just like John Travolta’s son before he died and Stallone’s autistic son even though their other children are all over the tabloids. Why do you think Travolta’s wife pretty much quit acting?
Anyone who's active on the Internet has almost certainly interacted with people who were labeled "low-functioning" as children and has probably interacted with someone who could be described that way as an adult. "Functioning" evaluations heavily weight real-time meatspace social interactions.
A lot of people conflate "low-functioning" and "intellectually-disabled." The rate of intellectual disabilities is elevated in the autistic population, and there is some correlation between severity of autism symptoms and ID (mostly driven by common-causal genetic disorders). But there are still lots of bright, articulate, introspective "low-functioning" autistic people, and if you actually listen to them describe their internal experience, it's a lot closer to "high-functioning" autism than it looks.
So where was Brendan Fraser’s oldest son?? Try to find a picture of him while his other sons are all over the internet. I went to public school and we went to school with mentally disabled kids but none of them were low functioning non verbal autistic…all were just sub 75 IQ kids that could behave and participate in PE and probably ended up getting jobs at a grocery store and did a good job.
I'm not sure what you're asking? I don't really know who Brendan Fraser is, but I gather he's an actor who recently won a major award, and his oldest son wasn't there? Obviously he was at home, not wading through paparazzi to sit through some awful ceremony.
(I don't see what the big scandal is. My brother was recently nominated for a comparably major award in a slightly different industry and I wasn't there. Thankfully hardly anyone knows I exist, since apparently not going means...something?)
It’s not a scandal, I’m just saying his autistic son would not have been able to sit through the Academy Awards like the two younger sons. I’m probably on the spectrum but I grew up in the same neighborhood and never moved and so I had a lot of friends and high school was fun and I went to college with many of high school friends…and then only after graduating college did people start mistreating because I was apparently “quiet” which you are allowed to say as an insult and it is perfectly acceptable. But everything eventually worked out. I only wish working from home and smartphones had existed a few years earlier because that would have made my life much easier...I hated talking to people on phone calls and having to eat lunch around coworkers and using office restrooms.
"Anyone who's active on the Internet has almost certainly interacted with people who were labeled "low-functioning" as children and has probably interacted with someone who could be described that way as an adult"
I'm with Pangolin on this one. Job experience with the really low-functioning was like Scott's description of the patient who would chew his fingers off if left alone; a family with two teenage sons, both autistic, both low-functioning. One of them had to wear a motorcycle helmet pretty much 24/7 because otherwise he would bang his head against the wall to the point of injury, and they were applying for a home renovation grant so they could build on a padded room where he and the other boy could go for respite, where it wouldn't matter if he ran himself into the walls because then he couldn't get injured.
That is not someone who is going to be interacting on the Internet. You're right about low-functioning being related to social interaction/will this person be able to leave a sheltered environment and work in the normal world, but there's a huge difference between "reasonably intelligent, socially avoidant to a huge degree that is detrimental" and "can't be left alone even in a sheltered environment because they will physically harm themselves".
There are people who are not nearly as low-functioning as imagined on the autism spectrum - though I'd like to believe we've gotten better about this over time - with a lot of that having to do with misjudging people's overall cognitive ability based on expressive language skills.
At the same time, there is a whole pseudoscientific movement, in part driven by the dogged popularity of facilitated communication, that is grounded in attributing greater cognitive ability to so-called low functioning autistic individuals than is actually there. While it seems positive - what's wrong with overestimating someone? - the failure to meet people where they are actually at with whatever actual thoughts and desires they actually have can end up doing a lot of damage to them.
"I personally use the same skills for predicting human agents, computer programs, fictional aliens, physical phenomena, etc. Questions of the form "How would a [rural Aghan villager/World of Warcraft API/sentient energy being/spherical horse] react to a [foreign soldier asking questions/command to display a texture/planet covered in meat-based life forms/gravitational force]?" are all handled by the same process: spin up a "virtual machine" in my head and try to simulate it."
It's like acting: you model scenarios and go "what would be the appropriate reaction in this situation?" so that you have a range of "I should react by: smiling/gasping/sympathising/shaking my head and going tut-tut/asking them to tell me more" for when people talk to you about "This happened/I did this/what do you think about this?"
My genuine, unfiltered reactions would be "I don't give a damn, why are you asking me about this?" but that tends not to be the way normal people interact on a social level 😀 Hence the acting a part.
Please note that the following is lacking an official diagnosis so, ironically, I am in the same category of self-diagnosed as I complain about elsewhere.
Re: mathematical ability - some of my paternal family have it, and it seems to be linked to musicality. Those genes skipped me so I'm useless at maths (I would say I'm dyscalculic but again that's self-diagnosed) and I can't sing or play instruments and had a terrible time in music classes at school because every "identify the note" exercise had me going "they all sound the same".
Re: interpersonal/social interactions - I'm literal minded, so it's *very* easy to lie to me and I don't pick up on what, in retrospect, should be obvious cues. I've made a lot of people upset because I didn't react appropriately, and it was only replaying the incident afterwards and thinking about it that I realised "oh right, they were signalling X and I should have responded Y".
That means I can now, for short periods, fake 'normal' interactions. I don't have a script, as such, but I do have a list of "normal people like to talk about these things" and I try and remember things that are in the news or sports. It's easy to have a casual, short, small talk conversation when you drop in some cues (e.g. "last week Mary mentioned her son was starting university; ask her how he is getting on") and let the other person do the majority of the talking, and then five minutes later you all have to go back to work instead of having to sustain a conversation. This seems to be enough to keep the wheels of social interaction greased.
In some respects, this has gotten worse as I've gotten older, because I have fewer and fewer experiences in common (when I was younger, we were all equally unexposed to the wider world). Now people are married or partnered up, have kids, go on holidays, etc. and I can't fake it on "Oh yes, I just love Rimini!" or whatever (I got caught out in one job when my boss' boss dropped by and did some chit-chatting with us minions by asking me what was my favourite Italian holiday destination; luckily I was rescued by another co-worker who could see I was ABORT, RETRY, FAIL? and she redirected attention to herself by chatting with him about places they had visited). I am also utterly uninterested in people and so this can come across, but fortunately since I am utterly uninterested in people, I don't need the same level of human interaction and can get away with the bare minimum 'small talk' not to seem *too* much of a weirdo.
3. I am generational challenged. Every time I see 'cis' I have to look it up and I am never quite sure how the trans prefix works. Trans(insert gender) means transitioning "from" insert gender or transitioning "to" insert gender?
A binary biological definition of "having Y" and "not having Y" seems straightforward to me. I'm not sure why it hasn't been adopted instead of often ambiguous phenotypical inquiries.
Whether one wants to claim "maleness" or "femaleness" or neither (regardless of immutable Y/not Y genotypical status seems to be a psychosocial and cultural question to be determined both by an autonomous individual and by an equally autonomous society.
To the extent that an individual wants to ostensible "prove" one's "claim" by resorting to chemical and/or surgical means aimed at changing phenotypology to me seems indistinguishable from body integrity identity disorder or xenomelia.
So there seem to be 2 classes of trans claims: those which are xenomelic and therefore per se mental illness and those which are not xenomelic and hence not per se mental illness but fall primarily into the category of egocentricity the degree of which is culturally determined.
Distinguishing between these two types of trans claimants would probably be useful in any associational investigation.
Oh, oh. explanation 4.5 (or 5.0) Sex and flexibility and autism and... are all genetic spandrels from our self-domestication. Please read "The Goodness Paradox" by Richard Wrangham. He did identify a genetic pathway, but I can't recall what it was, and I have no idea if it is related to flexible joints. But it might be. I'll try and find that part of the book. (But it's St. Patty's day and I broke my Lentian abstention to have some corned beef, cabbage and a few Guinness! Yipee.)
Yeah IDK. The genetic pathway had something to do with a surface and neural development in the early stages of development. Domesticated animals have all sorts of weird markers. Curly tails, floppy ears, white spots. (Also, smaller brains, longer childhood, and more mixed up sex.)
Re Book review: I'm hoping someone much better at writing than me, will do a book review here.
Hypermobility needs better definition. Saddle joints in the thumb connection to the palm run in my family. The rest of my (our) joints seem normal, or approximately so. But if you just asked me out of context, I'd probably say "yes, I have hypermobile joints.".
Related to women having looser joints, anecdotally, it seems to me that a higher percentage of women have elbows that hyper-extend. Does anyone have any data that support or reject this?
It's interesting how persistent people can be in "X is a social contamination" narrative regarding mental stuff. Often the same people, who are against mental blank slatism in other regards, just can't let go of it here. Transgender phenomena is a great example.
You think it's spreads by peer pressure and edginess? Guess what, it's correlated with autism, a heritable condition, which specifically makes people less susceptible to peer pressure. But of course, people just start assuming that autism is social contamination as well.
Okay, here is non-mental condition highly correlated with gender dysphoria: joints hypermobility. This can't possibly be a social contamination, right? But no, of course we will have the discourse how this condition is ticktockable and thus somehow also socially spread. Would anyone even think in this direction if not the link to gender dysphoria in the first place?
Of course the real cause has to do something with genes and complex biology, but discovering something new about such things is hard and requires a lot of effort. Smugly looking down on teenagers and being annoyed by their behaviour - doesn't. And thus we have a thriving epistemic minor league here.
The problem is that for certain social media outlets, the driver for contributors is to have followers. This is why we're always seeing stories about "new TikTok craze". And to stand out, you need a gimmick. And good gimmicks are to jump aboard whatever is in the news now regarding disability or trans or whatever.
So you get people claiming to have this, that, and the other disorder. They have young followers who copy them, because hey, this makes me stand out too and it requires others to give me affirmation and support! There was the rash of Tourettes:
Teenagers and young adults can be vulnerable to this kind of contagion because of emotional and psychological neediness. There's a ton of self-diagnosis going on, if you read the potted bios on Twitter and elsewhere there's an entire bingo card of "I'm this, I'm that". PTSD was popular, then that became so common that you had to stand out by being CPTSD from your traumatic childhood.
People casting about for a settled identity and looking for models and feeling like they somehow don't fit in right with what society requires and the culture of victimhood all combine to get people to think "hey, that sounds like me! my joints are kind of clicky!" Not because they intentionally want to scam, but because having a diagnosable medical condition means they have a *reason*.
I'm online acquainted with someone who has Ehlers-Danos. She's not trans, and she does have a bad time with it. It's not a fun disorder, it's not easy to live with. But it sure *sounds* exotic, if you're young and impressionable, and willing to think every tic and ache is something signifying A Disorder.
Is transness linked with this? Is it correlated with autism? Fucked if I know. But if it is, then that means that as you say, there is a genetic component. And being transgender may well be another disorder. But we're not supposed to say that, we're supposed to accept that it is normal and should be normalised and not made into a condition. And don't even hint at it being a mental illness. All the depression and anxiety and ten other disorders are just because people are insufficiently accepting of transgender people, and as soon as society treats it as being as normal as gay rights, then all the problems will magically go away.
I can see a constellation of factors meaning that a certain subset of people will have the trans, autistic, hypermobile joints, resistant to optical illusions and the rest of it. But not everyone, and not all at once - not all trans people will have the full set, not all autists will be trans, and so forth.
But for TikTok big names? Having the full bingo card just increases your star power, and it encourages your followers to be "just like me" in finding common ground with someone they admire, this is something relatable, I too have this thing!
"All the depression and anxiety and ten other disorders are just because people are insufficiently accepting of transgender people, and as soon as society treats it as being as normal as gay rights, then all the problems will magically go away."
I don't agree with this at all. Speaking from personal experience, my internal sense of dysphoria is a far greater source of psychological distress than any external social factors. Maybe the social factors are a worse problem for trans people who live in highly transphobic areas. But even then, I'd imagine that their internal feelings of dysphoria are still a major problem for them, just secondary to other problems like the fear of violence, lack of unemployment opportunities, and extreme loneliness resulting from transphobia.
My issue with classifying gender dysphoria as a mental disorder is that it leads a lot of people to misunderstand the nature of it. They see the term "mental disorder" and assume that it must be a *delusion* resulting from some kind of psychotic break with reality, as if a trans woman believing she's a woman is no different than a schizophrenic believing that he's Jesus or Elvis or JFK. This leads to people arguing that it's harmful for the medical establishment and society as a whole to "indulge" the trans person by acknowledging their preferred name and pronouns or giving them access to hormone treatments and gender affirming surgeries, despite the fact that studies have consistently demonstrated that socially and medically transitioning is incredibly beneficial to people with moderate to severe gender dysphoria.
In truth, I think a better comparison would be phantom limb syndrome - a form of distress that, while psychological in nature, results from a problem with the body. The pain is mental, sure, but I wouldn't say that it's a mental disorder in the same way that OCD is. (Of course, the distinction between physical and mental illnesses has always been blurry anyway. There's increasing evidence that some forms of depression may be rooted in physical factors such as inflammation and immune system reactions.)
However, I do fully agree with you that it's a *disorder.* Just not the type of disorder that the anti-trans crowd thinks it is.
Does the sensory experience of a weighted blanket fall under 'proprioception'? I thought proprioception was more to do with bodily location and movement rather than sensory perception as a whole.
1) If weird collagen makes the brain weird, too, then how? Is it because a weird-collagen brain is so weird all by itself that it would be weird even in an otherwise-normal body, or do brains that must adapt to sufficiently-odd bodies learn to be weird? (It's not an exclusive or.)
2) Even a non-quack EDS diagnosis needn't come with direct proof of weird collagen. Mine didn't. My above-threshold joint and skin abnormalities are consistent with a weird-collagen hypothesis, but nobody ever analyzed my collagen to pinpoint what, exactly, about it is weird.
The evidence labeling my collagen weird is all indirect. I can't swear that what's odd about my connective tissues is caused by weird collagen, rather than resulting from other weirdness, perhaps neuro- or immuno-logical.
I'd find it implausible for brain alone to explain my abnormal scarring, absent behaviors, like picking, that I know I avoided (a skeptic could say I *don't* know that I avoided them – that I'm in denial about my behavior, or I can't really know what I do when I sleep, anyhow), but even then, maybe other brains are better at modifying motion to take strain off still-healing wounds than my brain is. Certainly, asthma and atopy marked me as "immunologically weird" long before an EDS diagnosis did, and the immune system seems to have a say in scarring. Explaining away skin loose enough to pass the "abnormal" threshold without appealing to weird collagen is harder, but even then, maybe normal people flinch away in self-preservation sooner than I do when their skin is yanked for measurement? (Neck skin loose enough to pull over the face seems like more than "not flinching", but the threshold for "measurably abnormal" looseness has been set much lower than that, else I wouldn't meet it.)
Spitballing reasons why "maybe it's not the collagen" leaves me feeling a bit like a young-earth creationist, explaining that God is not only so sovereign that he could create a whole world, complete with deceptive fossil records, in under an earth-week, but would be a big enough dick to want to do that to sentient beings whose greatest fulfillment should be in trusting Him. "Keep it simple: it's the collagen," seems less like special pleading by comparison. But I don't directly know that it is the collagen, and sometimes the simple explanation is the wrong one.
It's not just EDS. I was born with pectus excavatum (known colloquially as funnel chest), a condition in which the chest cavity is caved in. Thankfully, my case is fairly mild and unlikely to cause any major health problems, but I've known people with more severe cases.
It's not a common condition. Only about 1 in 300 cis men and 1 in 1000 cis women are affected by it. However, a fairly large online survey of trans communities in Reddit found that *1 in 25* male-to-female trans people had it! I'm aware that there's very limited value in online survey results, but this still seems to be a correlation worth looking into. Maybe include a question about pectus excavatum on your next ACX survey?
More anecdotally, I've known a disproportionate number of trans people (both trans women and trans men) who had some sort of autoimmune disorder. I've also noticed that trans people seem to suffer from chronic pain - particularly joint and muscle aches - much more often than cis people. This includes people who are gender dysphoric but haven't started medicinally transitioning yet, so it can't be explained away as the result of hormone treatments or surgeries alone.
My guess is that being trans is caused by some kind of overarching issue with the structure of the body, which causes both the mental/sensory experience of gender dysphoria and a greater propensity to autoimmune disorders and muscle/joint/connective tissue problems. This wouldn't be mutually exclusive with either the Genetics or Autism hypotheses; all three of them could be true and tied together to some degree.
"More anecdotally, I've known a disproportionate number of trans people (both trans women and trans men) who had some sort of autoimmune disorder. I've also noticed that trans people seem to suffer from chronic pain - particularly joint and muscle aches - much more often than cis people"
Gender dysphoria is a functional neurologic disorder, and also in some cases theorized to be a neuro-endocrine disorder in which the hormone receptors in the brain and nervous system do not have the ability to to respond to circulating endogenous sex hormones the way they should. The outcome of either theory is that the brain and nervous system does not really recognize the body and congenital sex characteristics as self, which will cause cascading neurologic, psychologic, and psychosomatic symptoms. Because of the very strong connections between the nervous system and immune system, it's not impossible that some activation of the immune system ensues to deal with aspects of the body or hormone circulations not recognized as self, but I don't think any research has been done on this subject.
Thanks for the information! I hope we see more scientific and medical research on trans people and gender dysphoria in the years to come. There's so much we still don't understand.
Anecdotally, I have a sibling who's a trans woman, and while they don't have an official EDS diagnosis, they struggled with hypermobile joints for many years prior to transitioning, to the point that it seriously impacted their quality of life (although it's manageable now after years of strength training). Was very interesting to see such a high correlation here!
They've also had other weird bodily issues, like a hip impingement from a non cancerous growth that needed to be surgically removed.
Analyzing traits of TG people is horribly handicapped by the general reluctance to acknowledge that there are very different things causing transition both within and across assigned-sex-at-birth.
On the AMAB side, you have A)n naturally effeminate people attracted to boys (Laverne Cox) and you have B) basically crossdressers taking it further than usual (Lana Wachowski). Given the enormous social costs to transitioning, it is no surprise that among people who have whatever Thing X results in crossdressing, the people who actually decide to transition are more neurodivergent. They are not exaclty FINE with losing career opportunity, alienating family, etc, but they do not place as much value on that as the ones who choose routes other than transition to deal with Thing X. And they fit in better with their new cohort, as you see this group is full of the sort of nerdy hobbies and subcultures that one would commonly ascribe to Asperger's folks back in the day.
So anything correlating with AMAB TG people is not really correlating with the TG part, it's correlating with the traits that caused them to choose transition over trying to live the normie life with a wife and picket fence and 2.5 kids and no Marxist polycules.
If you want to actually study such correlations, you need to also sweep for the people who WOULD transition under other social, economic, and technological circumstances.
Any thoughts on the studies which found roughly the same unusual, sex-atypical neural markers in heterosexual and homosexual transgender women who have yet to undergo hormone replacement therapy after controlling for the trans-nonspecific impact of sexual orientation on brain structure? They're *very* small but to the best of my knowledge every study that actually tried this got results that point in the same direction. That 2016 meta-analysis everyone likes to point to did not account for sexual orientation.
I doubt the idea that there is a single factor that moves people to transition, mind, but I doubt Blanchard's typology even more. Human motivations are very rarely as clean as this.
The particular cause doesn’t matter that much to the problem I’m identifying. The issue is that, out of the universe of people who might transition, the ones who choose to do so will have different frequency of traits from those who do not. If they had enough social skills to end up with a talky profession and/or build up significant social capital, the cost/benefit analysis is much different than if they are a WFH programmer with a social life concentrated in nerdy subcultures. So when one observes, as we do, a higher incidence of neurodivergence and spectrum-y interests among transpeople, that is only telling us something about the subset that chooses to openly explore transition. So the traits you find if you survey them may be associated with people who place a low value on social conformity, and not with whatever is going on below the surface to cause this.
There is excellent evidence out there on the link between ME/CFS and hypermobility, even if it is little publicized, eg https://doi.org/10.7861%2Fclinmed.2020-0743. I saw a similar study in 2004, although it's not online, and was mostly ignored.
This 2004 paper describes a plausible causal mechanism you neglect. Root cause is lax muscle tone. This causes both hypermobility and, through smooth muscles of the vein, low blood pressure. People adapt to the low blood pressure through overstimulation or hypersensitivity to stimulation. Being perpetually overstimulated is a marginally stable way of regulating, that can collapse into the dysregulation of ME/CFS. This also explains why the classic ME/CFS patient was perceived as having above average energy/activity levels prior to getting sick. No idea how it explains the link between hypermobility and transgenderism.
Neither ME/CFS nor Long COVID is "just fatigue". Everyone thinks it has a strong neurological basis in the autonomic system, but no serious scientist thinks you can psych your way into it, any more than you can psych your way into hypermobility. Your position to the contrary is incompatible with the biomarker evidence https://doi.org/10.1101/2022.08.09.22278592. It's also incompatible with the fact that Long COVID can be avoided by metformin treatment. It would be good if you used your platform and reputation for following evidence to help vulnerable (hypermobile) people avoid having their lives destroyed by Long COVID by taking metformin, rather than telling them it's all in their head.
I hope you never learn this the hard way. As someone who recovered from ME/CFS after 10 years, but gets the occasional relapse after an infection, I am reminded each time how utterly different fatigue is from ordinary tiredness. When my husband went through gruelling chemo, a light bulb finally went off "oh THAT's what you meant for all those years by fatigue" - nothing in his previous life experience was anything like it.
"Being perpetually overstimulated is a marginally stable way of regulating, that can collapse."
Sorry to be sharing a PowerPoint, but it seems quicker than a YouTube vid for sharing Dr Pocinki's claims about pseudo-psychiatric symptoms in dysautonomia:
Since fainting upon standing during adolescence runs in my family (probably along with EDS), I'm likely not autonomically normal. Still, I don't usually find autonomic symptoms terribly bothersome. My heart goes out to those who do, though, and who find that behavioral healthcare addresses their symptoms poorly.
So much of behavioral healthcare revolves around curbing Wrongfeels with Rightthink: if we tell ourselves more constructive narratives, or at least silence the typical self-defeating ones, our Wrongfeels really should diminish. If we still suffer from Wrongfeels after learning the Rightthink, behavioral healthcare could move on to, "OK, let's try to help you manage your life better given these Wrongfeels" – but persisting Wrongfeels could also be interpreted as evidence that the patient hasn't committed hard enough to Rightthink.
Of course, if you're really doing the Rightthink, and the Rightthink does little to quell the noxiousness of Wrongfeels, that experience also makes Rightthink less plausible as a cure (and less compelling to commit to) – which might be fine if, "We can't promise you cure, but at least better management," were a promise providers themselves stuck to. But do they?
I think behavioral training *should* help me manage, and I'm giving it another go now (atomic habits bootcamp, yay/ugh!). But when my previous provider left BigHospCorp's practice during COVID, and I was reassigned for re-intake, I got someone who meant well, but who also seemed to attribute my mentioning any physical difficulty to "health anxiety". True, my re-intake coincided with an unusual physical flare, perhaps due to Moderna #2. Still, everyone at BigHospCorp, including re-intake, should have been looking at the same chart for me, marked with the same severity of asthma, the same knee surgeries, and the same geneticist – nominally their colleague – having diagnosed EDS. Maybe I was stupid for answering intake's sleep question with, "Right now, I'm losing sleep to asthma and knee pain"? Maybe consumers should simply *know better* than to mention physical problems to behavioral health personnel, at least at first? Still, "health anxiety" involves habits I just don't have, which isn't hard to figure out.
I worry about *demoralization* over the physical grind I face, blaming my own poor morale rather than the innate severity of the grind for my not coping better. Surely, a morally-normal person would just cope with this shit! Plenty of folks physically worse-off than I am seem to cope OK. So why am I morally-broken enough not to? That's a worry – hypochondrophobia! – that eats at me. But asthma and knee pain are better thieves of sleep than my worries are. And, no offense, intake, asthma and knee pain are well-known for this. I'm not optimistic about what intake would make of autonomic symptoms, if some poor patient interested in coping with them better wanted professional behavioral help.
Thanks for that link! My fainting in adolescence was easily cured with a high salt diet, and I didn't think further of it, but ME/CFS in my 20s was a different matter. At least I was lucky enough to have a diagnosing doctor who told me I was getting better management not a cure. Many years later, I studied advanced pranayama techniques, which are pretty extraordinary for their ability to directly train the autonomic system. Within weeks I was both off beta blockers and doing dramatically better. However, skilled pranayama teachers can be hard to find. Doctors give beginner level breathing instruction that is no comparison. Autonomic training in the medical system could get a lot better.
It bugs me when trans-unfriendly news sources say "what if a lot of kids presenting as trans aren't actually trans, but autistic?" I don't see why the two should be mutually exclusive, and there's good reasons for thinking the two could be correlated in a meaningful way such as having a common cause.
Implications for hormone treatment are for course a much more complex question.
My sense is (still) that (often minor/marginal/multi-causal) endocrine variation is a major cause of gender variation, and is pretty plausibly also a cause of joint hypermobility. The/a mechanism for endocrinology->gender could still be proprioceptive experience via atypical collagen, but I think that's unnecessarily complicated.
(Also I don't think you asked the necessary survey questions and it kind of doesn't matter because the sample is already underpowered, but this seems like a case where it'd be worth specifying chromosomes vs identification vs hormone profile for M/F/X, since the interaction between each is the subject of investigation.)
1) seems sensible to use as the default position until other evidence emerges. Possibly combined with how autist and trans people both seem to be hyper-aware of their bodies, which could easily exacerbate things?
When a disease is both hot on TikTok and has fuzzy diagnostic criteria, this is a recipe for weird outcomes.
Also, I'm unclear from the description if the issue is with both FtM and MtF? If it's only one direction, an underlying hormonal or genetic condition doesn't seem unlikely - if both, then social factors seem very likely?
Geezer Mother of grown Zebras posting here. Zebras are folks with EDS who have been told that when you hear hoofbeats, look for HORSES, which often delays diagnosis of a very real physical condition for 10-15 years. Which is why many younger folks go online when their local GP is clueless as to why something is clearly not right/normal. There are two different things here which aren't fully understood, which aren't necessarily paired - transgenders and EDS. First the Transgender thing. Given that one's GENDER is a social construct which is largely based on how folks who have a certain sexual role look in a particular historical era, Gender and how one manifests it seems to be pretty fluid particularly in anyone under say, age 30. Or maybe 40. Particularly those with kids who are Young Millennials and down. Gender roles do change and in different cultures there are different expectations of how one acts. A real man in the era of King Charles II wore lovelocks, high heels at court with stockings, and wrote passionate poetry to men and women with obscure references in Latin and Greek. After Beau Brummell's dark suited elegance charmed the dissolute court of the Prince Regent, the feathers of most peacocks tails were ripped out. These days, particularly in places like Texas, a lot of kids are taught by their family (often Christians who have "married up" multiple times) to rigidly conform to what their family/church/social group says is "how one should be." Kids often do this conforming/blending in with great zest in order to please all in their younger years. They have to have the right stuff, wear the right stuff. Belong to the right groups. Do the right sports. When the same kids reach puberty, they start moving outside of the bubbles their parents have carefully constructed around them and discover the world is a very different place than they were taught. Which leads to explorations of their social roles, life, the universe, and everything. Many these kids conform socially into their 20's with with The Family or In Church, but have a rich online social life which their "conservative" parents have no idea exists. Now Ehlers Danlos Syndrome (EDS or Zebras). A MEDICAL condition that's not well understood by your average GP or "local" non big city medical specialists. EDS folk often start experiencing very real bodywide chronic pain from preteen years. Sometimes they are told it's Fibro, or chronic pain syndrome, or this or that (it's not in your head but in your connective tissues) until they find a physician who is up to date. When it's not diagnosed, when they are told they need to "push through it" by a series of doctors (and kin), they will of course wander into other online communities in order to learn what's happening and importantly, how to cope when it takes 10 spoons to get through your day and you are given only 3. EDS is not just hypermobility and there are different types with the vascular EDS the worse (aortic ruptures in early adulthood). The ENTIRE body is affected. Think the gut and digestion. Some of us have the MTHFR gene that removes our ability to process the kinds of Folate that is put into bread to enrich it for "normal" people. MTHFR is associated with Autism, ADHD, OCD, and other things which certainly didn't stop my ancestors from being productive citizens, business owners, farmers, teachers, government employees, scientists, doctors, and soldiers. Some of us react different than the "norm" to medications and wake up during surgeries or dental procedures. EDS can affect VISION. Our vision can change during the day because our muscles that control the eye get lax. I've got Macular Degeneration pretty young going (like my Mom and aunts) as the macular has crappy connective tissue in there. There's more fun. EDS is often paired with POTs syndrome, Postural Orthostatic Tachycardia which is a Dysautonomia. Essentially, and I am GENERALIZING so don't jump on me, the vagus nerve is the body's command and control for our autonomic nervous system. Damage to the vagus nerve that's by a virus, or a bad illness, or an accident (a bad car wreck triggered a neighbor's sister's POTs), ANY of these can trigger a Dysautonomia. If you have, I'm guessing the "right" genetics, this activates a gene that turns "on." And BINGO. Note that Long Covid sufferers are now being diagnosed with POTs Syndrome. (As are folks with Lyme, Lupus, Epstein Barr/Mono.) The key for many who are younger is to get a real DIAGNOSIS, then figure out what to do/study so that you can work and get accommodations at work. Because of this you see more of the "work from home" and "I live online in a global community" types of folks who often literally CANNOT get out of bed to get to work. So they work from bed. In their room. And if they have STEM abilities (or good Maths teachers), they survive better than those who did Cheer and Ballet and suddenly are laid up. One last thing, GENETICS can play a role in EDS. I got started on genealogical research as to why the heck both my parent's unrelated families have EDS, POTs, Dysautonomia showing up in kids/teens these days. Of course now that GP's and specialists are getting a clue, getting a diagnosis is EASIER. Anyway, my research has hinted that EDS entered the British Colonies with my ancestors (who often fought in the Revolution) - either with British Quakers (Welsh, Midlands, Scots, Bristol) or with refugees from the Wars of the Rhine Palatinate who can over en mass in 1720, arriving in Philadelphia ("Pennsylvania Dutch") as well as numerous Southern ports. They ID'd as "German" or sometimes of "French" ancestry as Alsace Lorraine was part of the region. The two groups QUAKERS and the "GERMANS" intermarried in the USA from about 1850, instead of just marrying into their own cultures. This means a HUGE subset of the US population could have this kind of genetics which IF ACTIVATED can trigger a host of issues. A plus for Zebras is we usually dislocate rather than break limbs when we fall out of trees or are thrown off horses. And yes, Abraham Lincoln had EDS, the type that's called MARFANS.
I've been diagnosed with joint hypermobility, and I think it's similar to what you wrote about in your Geography of Madness post. Chronic pain and other sorts of issues are very much susceptible to social contagion.
I'm reminded of work finding links between finger length ratio and sexual orientation. The notion is that a common developmental event that influences both bone and the brain explains the phenomenon. Speculations include the presence of androgen and estrogen receptors in bone; and maternal immunity to male-ness, since a correlation with the number of biological older brothers was found in gay men. In any case, if the relationship between gender identity and EDS holds up, this would be another clue that some common developmental event links bone & joint development to psychosexuality.
Wonder if it's EDS messing with the brain and nervous system so extensively that it causes symptoms that resemble these other conditions, and neuroscientists just haven't been able to differentiate the two. Gender dysphoria and autism are both functional neurologic conditions, and I hear a lot of stories of EDS patients with similar functional neurologic issues and issues with their central nervous system. For instance, can certain forms of EDS cause problems with hormone receptors in the brain, abnormal endocrine or neuro-endocrine functioning, or structural/functional problems with the brain's body map [xenomelia]? All of these problems are proposed mechanisms for the development of gender dysphoria. Would be interesting to know whether collagen mutations can affect these systems.
> EDS diagnosis in our patient population is 132 times the highest reported prevalence in the general population
> Ehlers-Danlos: 0.36% cis vs. 0.37% trans
It seems weird for no one to comment on the fact that the correlations noted by Najafian et al and Jones et al appear quite muted in the ACX data, so I do so hereby comment.
EDS (along with CFS/ME, which got insulted instead of just ignored) is coming into focus now... it's probably historically been massively under-diagnosed. I don't know why it would be more prevalent in trans people but I wanted to thank you for actually putting thought into this instead of just reading "instagrammable" and "special snowflakes" and dismissing the entire thing. EDS and CFS are both real illnesses with actual biomarkers, they are just hard to diagnose or treat and the attitude of the medical establishment (though it seems to be getting better now - long covid actually kind of helped) has historically been extremely dismissive. But it's also helpful to acknowledge that these things exist on a spectrum and just as you can have hypermobility without having EDS, and fatigue without CFS, you can also have EDS or CFS at different severities. People who might have had a milder form of EDS in years past would probably not have known about it, because the awareness just wasn't there and it wasn't as completely imperative to their lives, to get a diagnosis.
I'm sure it doesn't explain everything but I wonder If there is age confounding here.
Obviously there has been a lot more openness about and awareness of transgenderism in recent years. But also I feel like hypermobility wasn't discussed a lot even 10 years ago.
I have had back problems since I was a child. I've now learnt that it's probably caused by hypermobility. But no one suggested that when I first had issues ~20 years ago.
This occurred to me. There may be a lot hypermobile people out there, but being on the right kind of social media encourages you to realize it's a thing.
I thought about age instantly... which probably means they thought about it too.
I know when we were kids in the 80s/90s there were lots of discussions of "double jointed" people. And everyone seemed to know a couple. But I don't think I heard the word "hypermobility" until a couple years ago.
I'm 20 years older. Double jointedness was discussed by kids in 60s and 70s. I always thought it was somewhat associated with musicians. I'm both. But I don't think double jointed is really at all the same thing as EDS and hypermotility.
Why wouldn’t it be the same thing? The main thing people talked about was the same. Fingers and joints that bent the wrong way.
EDS requires a specific medical diagnosis.(<1%) It is also painful.
Being double jointed is self diagnosable.(may be as high as 20%. Actually just saw Brazilian pre school study showing generalized joint laxity 64%). Not painful.
I thought hypermobility was just variable. As in, a lot of people are variably hypermobile, and in some cases it can result in pain of varying severity. EDS is a specific diagnosis based not just on hypermobility but on additional features as well (eg the stretchy skin thing).
The Ehlers-Danlos Support UK website says:
"Joint hypermobility with its possible complications is now classified using the idea of a spectrum. At one end is simple hypermobility which causes no symptoms, is not a disease and is a trait, like height. At the other end of our spectrum is hEDS, and in between falls a range of hypermobility-related conditions called hypermobility spectrum disorders (HSD).
...
HSD are likely to be common. Someone with HSD can be just as symptomatic, more so even, than someone with hEDS. Management advice for both hEDS and HSD is the same."
EDIT: Forgot link: https://www.ehlers-danlos.org/what-is-eds/information-on-eds/hypermobile-eds-and-hypermobility-spectrum-disorders/
So far as I understand it, hypermobility syndrome and hypermobility spectrum disorders DO NOT include people with asymptomatic hypermobility or people with double-jointedness but no other symptoms.
So I do not think HSD even with the expanded definition is likely to really be common.
The medical community got objective with its criteria for EDS in 2017, so this quasi medical category HSD and the spectrum was created to accommodate people "left out".
I'm double-jointed. My thumb can easily bend sideways to be almost parallel with my wrist, and with a stronger pull I can get it completely parallel. (I used to be able to get it to touch my wrist, but I'm too old to do painful shit to impress people anymore.)
I've never noticed any other joint peculiarities. I'm fairly flexible but no gymnast. So yeah. It's not simply the same thing. Even outside of diagnosis, after thinking it over while reading this article, I'm still using the word "double-jointed" and not "hypermobile" for myself.
The brain has connective tissue. Maybe EDS disrupts brain connective tissue leading to general neurodiversity? Or even particularly targeted at however the brain represents theory of mind?
I think this is the actual explanation. For example, Fragile X Syndrome is a genetic condition that disrupts the production of single protein, FMRP, and this disorder results in both hypermobility and autism. A single protein can affect two seemingly unrelated things
The x-linked angle is interesting: EDS is 30:70 male:female. There does seem to be a gender component to it, autism, and of course Fragile X.
The X chromosome is enriched for genes that code for cognition, and it has also been under massive selection in the last 50,000 years: https://www.biorxiv.org/content/10.1101/2022.09.19.508556.abstract
Whenever we see some pleiotropic gene with a bunch of bad effects you have to wonder what is keeping it around. Even new genes, like all those we have gotten from Neanderthals ~50k years ago, have been swept away if they are particularly bad. Must be some upside.
Similarly, BRCA2 increases the risk of cancer and was picked up from the Neanderthals. But it also changes cognition, and is related to Autism: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6291940/
It could go the other way just as easily. Mobility is, strangely, a mostly neural issue. There is a set point for each joint after which muscles fire heavily to prevent moving past that point. With practice you can teach the brain that it's safe to go beyond that, and the set point moves. Incidentally, this is why you get tied up on some forms of anesthesia - muscles don't work at all and you can end up hurting a joint just from an arm dropping from the bed.
That is really fascinating, I didn't know how mental flexibility was. I suppose it makes sense. Joints are, of course, elastic. This is why stretching works to get more flexible. If your mind is sort of loosey goosey about set points then you could get lots of "stretching" in just with daily life.
I think you misunderstood Radu's point. The reason stretching makes you more flexible isn't (primarily) that the joints are becoming more elastic, it's that you're training your body to allow a greater amount of stretch in the joint before contracting its muscles.
It's kind of like how people who start weightlifting can massively improve their lifting strength in the first few weeks with little to no increase in muscle mass. Most of the "beginner gains" are from synchronizing muscle contraction, and thus getting more use out of the muscle the person already had. Obviously past that point further gains mostly reflect muscle hypertrophy.
To add to this, I suffer from MS related spasticity that makes me rather stiff. The fever I got with Covid made my legs temporarily unresponsive. I could only move them manually with my arms but they were super flexible and loose.
More evidence from the Feldenkrais Method-- a lot of it is gentle repeated movements which increase flexibility quickly without stretching.
That might explain an association with EDS-H, but none of the other types. https://www.ehlers-danlos.com/eds-types/ All the others have been linked to genetic mutations affecting connective tissues.
In principle, EDS-H could actually have completely different etiology from all the others. But if it were, say, a kinesthetic-proprioceptive manifestation of the sensory hyper/hyposensitivity we see in autism, then we'd expect to see elevated rates of both hypermobility (from hyposensitivity) and unusual hypomobility (from hypersensitivity) in autism. Do we? That's not an observation I've seen.
Also, as someone whose autistic sensory issues are more on the "hyper" end, I'm hypermobile, not hypomobile. Or I was until I started testosterone, anyway - I was just over the point threshold and I can't put my palms on the floor anymore so I probably don't qualify now.
"Kinesiophobia" is a term used to describe moving less because of a belief that bad might happen (like joint injury). People whose physical discomfort seems attributable to EDS or other joint hypermobility are often warned against "kinesiophobia" (which, if your neurology/musculature/whatevs doesn't keep your range of motion bounded away from high-risk-of-injury territory, is at least partly a rational fear).
I do sometimes wonder if the reason my range of motion is so wide is that my joints "feel" just about as "stiff" mid-range-of-motion as they do at the extremes, meaning I get less signal of how far is too far. (The sensation of stiffness seems to be a brain-based warning rather than reflective of less-deformable tissues.)
Sure - but why the hell's my skin stretchy? That's not neural. If you got out the calipers and stretched the skin of trans people, I'd bet you'd find it stretched farther, on average.
This would make a lot of sense I think, see:
https://scienceoveracuppa.com/2018/08/19/connective-tissue-the-brain/
"...the ECM [a major component of connective tissue] supports the growth and establishment of neuronal axons and dendrites and also helps maintain synaptic connections [2]. Interestingly, the local ECM must be degraded and remodeled to allow for synaptic plasticity– a process that’s dependent on neural activity [3]. Scientists have also found that the ECM forms compartments surrounding neurons that help to limit the diffusion of the excitatory neurotransmitter, glutamate– allowing refinement of those signals between nearby neurons [4]. Without such barriers, glutamate would be allowed to reach more distant neurons, substantially altering patterns of cell communication..."
And connective tissue, specifically collagen 5 (collagen 5 mutations underlie many forms of classic EDS), seems especially to be involved in early neurological development:
"...Much earlier in development, during embryogenesis, some types of collagen such as collagen 5 are also expressed in the germinal regions of the brain in areas that are actively producing neurons [5]. While it’s uncertain exactly what collagen 5 may be doing during neurogenesis, it’s known that other forms of collagen (e.g., collagen 4) are expressed in these same regions during early development and seem to be important for neuronal maturation [6]..."
So much always comes back to glutamate somehow, doesn’t it.
Not too surprising. Glutamate is the main excitatory neurotransmitter and accounts for ~60-70% of synapses in the brain (wikipedia quotes 90% but doesn't cite a source and I've seen different values quoted elsewhere).
Also from an evolutionary perspective it was basically the first neurotransmitter to develop, comb jellyfish for example branched off the evolutionary tree early enough that its the only neurotransmitter they possess. Many (most, even) other neurochemical pathways are glutamate-modulatory.
Would be quite interested in hearing more about this - "all forms of neurodivergence correlate with each other".
Statistically, if you have one form of nerodivergence, you are more likely to have another form then the general population. I expect this is due to the thing where, when you have one generic mutation you are more likely than average to have another.
Why do you expect that, and not just pleiotropy?
Yes, pleiotropy is ubiquitous, seems the most likely explanation.
"Form of neurodivergence" is not a fundamental category. We don't have the "true name" for the vast majority of possible deviations from the norm, and any one of them can manifest in an apparent variety of ways.
I'm totally cis-hetero, but I'm hypermobile and super clumsy and would welcome anecdotal or more supported info about how to deal with the weird disconnect between brain/body that plagues we hypermobiles (and maybe everyone to some extent--I wouldn't know).
Yeah, me too also. Cis-hetero, hypermobile, and so-so proprioception. I do a lot of yoga, because I think it helps a little with the proprioception, and it's entertaining to find it so easy to do all the stretches. I don't think I really have EDS, because the few people I know with EDS would hurt themselves doing yoga. Like, one woman I know dislocates her ankle while she's asleep. My situation isn't nearly that bad.
I assumed my hypermobility couldn't possibly be that bad, either, until a nurse friend I know told me I should check.
I had heard of can-pull-your-neck-skin-over-your-face EDS before, and I definitely didn't have – or want to have – *that*. That is, I knew some people's problem was blatantly obvious lax skin and joints, and instead of thinking, "Hey, mine are a little lax, maybe, I, too, am 'special'," I thought, "Whew, whatever might be up with my skin and joints, I'm glad it's not *that*!"
My stopping yogalike stretching (especially, it seems, stretches designed *for* sciatica) coincided with the sciatica in my driving leg clearing up. Considering other factors, I can't say for sure that stretching had really been hurting me. But it's possible stretching was making stuff worse for me.
Interesting. I don't have the "velvety" stretchy skin either. I'm glad your sciatic cleared up.
Makes sense in theory. I deeply loathe yoga because I have always had the feeling my body is acting "wrong" because I'm so clumsy, so I just _can't_ handle being told my breathing is wrong, etc. I don't have severe EDS or anything, just obvious hypermobility. My skin, etc. Is fine.
I fit this description too.
I have to wonder what the results of this survey would have been in the general population, and not ACX readers.
Martial arts, particularily throw based martial arts (Judo, BJJ) made that hypermobility and especially the clumsyness much better for me. It sorta makes sense, you need to learn how to move your body in incredibly specific ways (google Berimbolo step by step - a 26 minute video pops up for a single transition move). If martial arts are a bit too martial for you, I strongly assume that dancing produces the same result, of forcing your brain to rebuild these connections with the body by teaching it complex choreographies from the ground up.
Thanks! I have tried dance but just can't do it--I can do moves right that involve top or bottom half of body but not both at once. Martial arts is a good idea.
Many teens are fairly flexible, but I'm finding the tone of this (hypermobile people just want to be seen as special, just like trans people!) really annoying. I do not enjoy being hypermobile.
No problem. There is also a strange relation between strength and flexibility, where people with hypermobile joints are significantly weaker than those without. My flexibility was a huge help in martial arts, but I was a complete wimp at first. Learning how to throw people was probably what made the clumsyness better, but building some muscle by yeeting around people is most likely what made the hyperflexibility better. It is said that if you are too strong for your low flexibility you risk injury, but maybe if you are too flexible for your low strength that is bad aswell.
>https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4845357/
>Results
>Male hypermobile participants had significantly less strength than non-hypermobile males in the right (71.7 Nm, SD = 23.1, vs 97.6 Nm, SD = 47.4, p = 0.006*) and left (74.8 Nm, SD = 24.3, vs 97.7 Nm, SD = 45.5, p = 0.007*) elbow extensors and right knee extensors (188.7 Nm, SD = 83.3, vs 228.3 Nm, SD = 106.7, p = 0.03*). In females, both elbow extensors (right: 51.9 Nm, SD = 16.2 vs 48.8 Nm, SD = 17.8, p = 0.4; left: 48.9 Nm, SD = 17.2, vs 44.7 Nm, SD = 15.1, p = 0.2) and knee extensors (right: 161.3 Nm, SD = 74.9 vs 145.5 Nm, SD = 75.8, p = 0.3; left: 155.2 Nm, SD = 73 vs 124.3 Nm, SD = 69.6, p = 0.07) strength were not statistically different between hypermobile and non-hypermobile participants.
That's interesting--I don't bench press weights or anything but exercise for health, and have been perplexed by my lack of upper body strength relative to my overall fitness. I had just chalked it up to being female.
Martial arts, especially those that involve throwing and also the so-called internal arts, train your postural muscles. I think these are important both for joint stability and proprioception.
I think my strength is lower than it should be. I take some resistance training classes every week, but I'll never be really strong. I have wondered about the relationship between my hypermobility and my seemingly low strength. It makes yoga weird because all the things requiring flexibility are easy, and all the things requiring strength are hard, so I'm terrible at arm balances and the like.
This aligns with my experience, I'd say I have average to below average joint flexibility and I've always enjoyed strength training, partly because while I lift I'm subjectively confident that I won't accidentally overload my joints and damage something because my muscles are much more likely to fail first.
All of my immediate family members were or are hypermobile; we were also all AT LEAST average on the athletic field or with lifting heavy objects. It could be that hypermobile people gravitate towards sedentary lives because exercise is slightly more uncomfortable for them ON AVERAGE with a lot of variance. Such that you have people with hypermobility that are powerlifters who can bench three hundred pounds and others that are crippled by dislocations.
I don't have any helpful suggestion for dealing with brain-body "loosenes" other than accepting the burden of having to consciously practice proprioception more than seems normal, and finding activities you enjoy well enough that the added burden of that practice – plus repeatedly hearing "you're doing it wrong" – is tolerable. Any discipline that teaches consciously retraining proprioception might help if you don't find it prohibitively frustrating.
"Many teens are fairly flexible, but I'm finding the tone of this (hypermobile people just want to be seen as special, just like trans people!) really annoying. I do not enjoy being hypermobile."
Fortunately, the world is full of helpful moralists eager to inform us that we must secretly be enjoying experiences we don't find enjoyable in hopes of shaming us out of our problems.
Sometimes, the shaming even kindasorta works. For example, I'm shy and self-blaming, and shaming myself by telling myself these habits were "secretly the vice of pride" sometimes proved helpful for temporarily kicking myself into being more outgoing and less focused on my flaws. I didn't find shaming myself out of shame a sustainable strategy long-term, but for someone who doesn't need a longer-term strategy to succeed in changing their habits, I could see how something along those lines might work. (Incidentally, I can't perceive myself as excessively self-blaming. I still think I *should* blame myself just about as much as I do, and my problem is just being bad at handling what I perceive as a "normal" amount self-blame (for which I can, obviously, blame myself). But others with my interest at heart, and who ought to know, keep pointing out that excessive self-blame is a real problem for me, that I'd be a better person with less of it.)
Yeah, that's kind of my problem--I am so sensitive about being told my body is doing things "wrong" that anything that involves constructive body feedback makes me anxious. I have had very gentle yoga, dance, etc instructors, and at my age, best I'm probably going to be able to do is maintain my (solo-activity) fitness habits and be proud of that.
Excessive self-blame is not my particular issue but sounds incredibly stressful. Positive thoughts and self-care to you, whatever that means for you.
I came to this thread to mention the same thing, though my experience is in modern fencing.
I always had shitty proprioception and fencing taught me a lot about where my body is in space and in relation to itself--I did piano as a child and I knew where my fingertips were, but not where my arm was. Fencing fixed that. A different classmate who started in taekwondo and came to fencing reported similar awareness benefits from both disciplines.
As far as hypermobility, there was a guy in my fencing class with hypermobile knees and he reported fencing helping (when the knees cooperated).
Fencing, martial artst, yoga, dancing, we are building quite a list of sports which are beneficial for the hyperflexible.
I strongly assume we can add climbing/bouldering aswell. I wonder if archery too?
Weight lifting.
Back Squat and Deadlift.
Start slow and don’t be an idiot.
I think "joint issues → poor proprioception" is the most interesting step to me. In the field of robotics there's something called inverse kinematics that's used when you know where you want the end of a robot arm. You use the properties of the arm to back into calculations for the corresponding angle of each of the intermediate joints because this is what you effectively need to tell your motors in order to put the end of the arm where you want it to be. With zero knowledge of the relevant neuroscience, it's easy for me to imagine how joints that are either inconsistent from movement to movement, or gradually changing over/after the course of development could really throw a wrench into whatever the brain's analog of inverse kinematics is.
I think inverse kinematics is actually exactly what the brain uses for movement.
If you took a fleet of identical robots and varied the range of motion on their joints, how much longer would learning motor control take for the robots with the laxer joints?
If a robot's range of motion can be set either narrow enough to avoid damaging configurations without "thinking", or wide enough that avoiding damaging configurations would have to be carefully learned, how much does that change the robot's computational burden? (I'd guess that an increase in range of motion that doesn't increase damaging configurations would be less burdensome than an increase of range of motion that does.)
Roboticists talk about "joint limits". I don't quite understand what they mean by the term, but could make an effort to understand the math if I found a congenial starting point in the literature.
What you're describing isn't how must robots work (though I'm sure there have been experiments in robots "learning" this stuff). Typically the mapping between joint angles and end effector (the end of the robot arm where there's usually a tool) is done in advance by the designers, in the software. So the robot isn't "thinking", per se, when it goes to move. It just crunches some numbers and then moves each joint accordingly. Unpredictable joints or joints that are consistent but different from what was designed in will mean that the end effector will be positioned somewhere the robot/user isn't expecting. Typically, nowadays, there are also torque sensors built into joints so that if the robot collides with something it will stop trying to move. "Joint limits" aren't complicated, they're just how far a particular joint can move, usually an angle. You can roughly think of your elbow as having limits at 0° and say 270°. It just can't physically move beyond that range.
Thanks! As you point out, there are probably experiments in robots "learning" this stuff, and that learning, rather than what's programmed in advance by designers, is what I'm curious about.
Human joints sometimes exceed their joint limits by dislocating, and the wider a human body's range of motion already is, the easier it is for that body to achieve configurations increasing the risk of dislocation.
I think you mean 170* not 270*
I actually meant 120! But yes, let this be a lesson as to why public writing should not be one's first task after waking up.
Don't trans people have high rates of mental illness? Seems likely to be a mediation relationship if not spurious. See https://onlinelibrary.wiley.com/doi/abs/10.1002/ajmg.c.31955
If they truly believe that they are 'in the wrong body' then the rate of mental illness is 100%.
Maybe, but I'm talking about otherwise. The thing I'm interested in is whether there's a general "suggestibility" factor or general diathesis that also accounts for, say, neuresthenia.
The new political talking point seems to be "that 'born in the wrong body' stuff is just for the normies, the same way the gays did 'born this way' - it makes the cis hets sympathetic because 'poor you, you can't help being like that so you shouldn't be persecuted' and that gets us what we want".
Now some of the very online activists are going after dysphoria etc. as medical gatekeeping - the only reason for transition should be 'because I want to', and that should be enough.
> the only reason for transition should be 'because I want to', and that should be enough.
If you're paying your own medical bills and lifetime or hormone therapy, then sure. Where that's not the case is when considerations of medical necessity enter the picture.
I think you've got a confusing typo here-- you wrote:
'Here’s the results for biological men - “M (cisgender)” is coded as cis, “F (transgender f → m)” or “Other” is coded as trans.'
Since you are talking about biological men, I think you meant to say 'F (transgender m→ f)' not 'F (transgender f → m)' ie, the sentance should read: 'Here’s the results for biological men - “M (cisgender)” is coded as cis, “F (transgender m→ f)” or “Other” is coded as trans.'
Thank you so much for doing this analysis. I only had a comment about the cis-trans, biological-trans nomenclature. You switch kind of liberally between the terms “biological woman” and “cis woman” (and same for men) despite there being an inexact overlap of the two (e.g. nonbinary afab people; intersex people who identify as cis; etc), and despite having asked only questions about cis or trans status in the survey.
It results in a small loss of specificity and doesn’t appear to aid clarity either (plus it raises hackles I’m sure for any trans readers and/or survey responders seeing themselves referred to as “biological men” or “biological women”).
It was just a kind of surprising detour from the usually very appropriate and specific terminology you use when discussing anything trans, and I couldn’t see any benefit gained by it. (So I thought it worth drawing attention to/asking about.)
I think it's pretty clear exactly what is meant, especially in the context of the question being asked — the categories being opposed here are cis and trans, in the case of the EDS hypotheses, and biological male/female, in the case of analyzing the data.
I haven't checked, but possibly Scott actually does use the terms exactly appropriately as the immediate context shifts from one to the other.
-------------
Regardless, I think this is hardly, uh, hackle-raising, so to speak: "biological men" captures exactly the relevant distinction we want, and trans readers can hardly be unaware of the fact that there is a (biological) difference here (else no need to distinguish at all).
Something like "AMAB" identifies the population we want to talk about, in the latter case, roughly as well as "cis men" does — that is, there are conceivable but rare/unlikely exceptions — meaning that, by your apparent standard for precision in language, there's some other circumlocution Scott would have to use; presumably, it would require explanation, being another unfamiliar neologism to most; and it would mean exactly the same thing as "biological male" anyway.
In other words: using a different term here would be less clear, more troublesome, and ultimately just an entirely pointless step on another euphemism treadmill.
Speaking of such treadmills, this is sort of related to the recent post about "slur cascades": if a circumlocution is used and becomes sufficiently universal, such that everyone immediately mentally translates it without effort, it will gain the exact same stigma the original had and need to replaced again.
(Males --> okay no sorry *biological* males but there are non-biological males too --> okay no sorry we don't want to remind you about that reality, we mean *chromosomal males* --> no wait sorry we mean...)
...so, uh, you might not be able to tell but I disagree that anything needs changing here.
I think you misunderstood the thrust of my concern. It’s a) that if you use the term “biological woman” and “cis woman” interchangeably you get false positives (i.e., people who are one but not the other are misidentified in the data: a serious concern in a sample of less than 100), and b) when you also (in the same text) use “biological women” to refer to trans men, you create grammatical aberrations whereby a word that is specifically intended in one instance to mean “x, to the exclusion of trans people” now in another instance means “x, specifically the trans members of x.”
There is an inconsistency in this usage that results in mismatches that I can clearly point out. I would invite you to give me a clear example of who would not be included in the already existing phrase-set: i.e., amab-afab, trans, cis, nonbinary, intersex. If you can invent a possible person who would not be adequately described by those words, such that “biological” becomes a necessary or even useful (rather than confusing) descriptor, I will take your point. But as it is I don’t see it.
To be clear, the main issue is that it creates inconsistency (and is used to mean cis, which is not its meaning) where simply using known, established nomenclature avoids that. (And as a plus avoids the risk of offence, but that’s only a plus - which is why I parenthesised it.)
>I think you misunderstood the thrust of my concern. It’s a) [...] b) [...]<
That part of your comment is addressed in the first paragraphs of mine. I've added a helpful line break to make it clearer.
>If you can invent a possible person who would not be adequately described by those words<
I think you misunderstood the thrust of my comment. It isn't that there is no combination of words that can specify some individual; it's that none of these terms exactly capture the population we want to talk about when we use the term "biological male" — or, at least, capture it no better than "cis male" would; and, as you point out, there are possible (if rare) exceptions.
>that’s only a plus - which is why I parenthesised it<
I'm glad to hear it! I felt your implication — and, uncharitably, your real motivation — was that it's Wrong and Transphobic to use such a term. I apologize if I misread you.
It’s a fair note that people would be more likely to understand what population was referred to by “biological men” than, say, “people assigned male” or “amab people,” but I think when the topic is trans people specifically (or any, let’s say, esoteric demographic), then some esoteric vernacular can actually aid clarity. The clearest example of the sort of confusion that arises from this can probably be seen in the comment directly above mine, where the commenter is asking if a certain part of the text is really about trans men as it suggests (in an instance where that is written as a subcategory of “biological men”) or if that’s a typo.
It’s okay. I’m biased in that I have the belief that, where possible if it doesn’t affect accuracy, language should be altered to avoid offence - but I don’t think I’m arguing from that standpoint right now. This does look to be an occasion where a different nomenclature would be more accurate.
I think that very precise terms are necessary if we get to "there is indeed a sub-population of trans people who suffer from joint disorders at a disproportionate rate and that turns out to be (intersex people who were assigned AMAB and later identified as trans/people with this particular chromosomal profile where it's site X on chromosome Z that is involved)" but for a first break down of the data to sift through, we probably do have to stick with "biological male/biological female" as a rough approximation.
I think most people are willing to make concessions, but it's that currently transgender issues are such a political minefield and culture war topic that any perception is of demands by diktat being made. See "The Gamer" and its attitude of "We're not going to review a transphobic game but we're still going to lecture you about it":
https://www.thegamer.com/hogwarts-legacy-transphobia-sales-reviews-jk-rowling/
"Hogwarts Legacy has already sold over 12 million copies. Good job, everyone - we worked together to show that pesky woke boycott who’s boss and stuck up for the little billionaire and the multinational corporation. The continued acceptance of JK Rowling’s universe and its transphobic baggage is a clear sign that gamers are willing to throw aside societal progress and the support of minority groups if it means playing the next big video game.
February was an avalanche of moral compromises from fellow critics, friends, and family. I watched as they bargained with their personal worth as a trans ally if they decided to buy this game, their excitement outweighing the pleads of us fighting for human rights on the sidelines. Here at TheGamer, we decided against reviewing or guiding Hogwarts Legacy. Our coverage instead serves to inform the greater conversation and shine a light on how its potential success and the ongoing boycott speaks to a far larger societal issue."
Scott *isn't* using the terms “biological women” and “cis women” interchangeably, though? By "biological women", he's referring to cis women + trans men + a few other groups such as AFAB enbies, an agglomeration of people that corresponds to, from survey responses, those that selected "Female" for the "what sex were you assigned at birth?" question. I ctrl-F'd the word "biological" and none of Scott's uses are as a synonym for "cis".
"(plus it raises hackles I’m sure for any trans readers and/or survey responders seeing themselves referred to as “biological men” or “biological women”)"
They should grow a thicker skin then. Biology is highly relevant to the topic Scott is investigating.
I made a series of arguments as to how the term was misused and could result in misidentified respondents. In the course of that, in one small parenthesis, I noted that fixing this problem would also make some trans people feel better, purely as an aside and not as part of my argument.
That you focused on that little aside and no other part of my argument shows me, essentially, that you only like this terminology precisely because it does NOT make trans people feel better/that whether or not it’s accurate or appropriate is irrelevant, so long as it secures the value of alienating trans people.
The thing is: the term is used inaccurately here and does result in false positives, though I must apologise that in the course of correcting that problem, yes, you might also make some trans people more comfortable.
C'mon, that's disingenuous. It's perfectly possible to disagree only with, or most with, only one part of a comment — and your implication is not just "we might make the world a nicer place :)", but that it's *wrong* to use a term like "biological male".
(Hence, my own post... so, uh, I'm not *entirely* unbiased, here. *cough*)
As a trans person, thank you for being an ally and fighting back so that I don’t have to.
As A Trans Woman(tm) I genuinely didn't even notice this apparent disconnect until you pointed it out; the intended usage seemed quite clear from context. Sometimes sex and gender still need to be demarcated! For whatever that's worth. The expected replies then wrote themselves, which didn't raise any of my hackles, but did make me think "brother, here we go again". Which is exactly why I think the whole language-semantics thing is a dead end: it tends to generate a lot more heat than whatever the initial alleged offense was, with very little potential light even in the most charitable of reactions. Sort of related to the "making up a black guy to get mad at" thing..."making up a trans person to be offended on behalf of". We're not exactly gun-shy ourselves about telling others when we're offended.
(I do want to clarify that I appreciate the good intentions and faith anyway, this was pretty civil compared to how such conversations usually go. Best of a bad sittuation and all that.)
The problem is the clumsiness of the terms involved - investigating EDS/joint hypermobility disorders, it's the neurology, physiology and the rest of the purely biological systems we're after, to find out "is something going on here with hormones or what?"
So then when sorting out people who say they do/don't have it, we're sorting them on biology. Do trans people really have these conditions more? If so, why? Did they have them before transition?
So there we go for "men" - that's biological men, be that cis men with male biology including influence of hormones *and* trans women before they started taking oestrogen (if we're trying to see is oestrogen the defining factor here). Same with "women" - cis women and trans men before they started on testosterone. If you're a trans woman and you had this condition before starting the course of oestrogen, that is evidence against the oestrogen hypothesis - and unfortunately that does rest on "biological male" and "biological female".
There isn't really an easy way to get around "biology of a male" and "biology of a female" when discussing "is this condition related to specific, physical biological factors?"
It seems that the "instagram" theory is extremely easy to falsify.
I have generalized joint hypermobility (I'm also queer / not cis in a vague sense that doesn't show up on the survey). This is a diagnosis with clear physical markers. Stuff like "your elbows overextend more than 10 degrees.
Most variants of EDS are also like this. It's only some (I think ?) rarer variants that don't present with joint hypermobility and skin extension.
Before seeing your post, I never bothered to check if my elbows overextend more than 10 degrees. Now that I've checked, it's something like 10 degrees, probably slightly more? Hard to tell.
Yeah I don't know exactly how it's measured, but I think you're supposed to look at the bone structure, not anything external. Also just FWIW, 10 degrees is like the edge of what's considered "normal".
I guess my point wasn't clear. I was saying that it's totally possible for people to read about EDS on Instagram, check if they have it, and discover that they do, while everyone not on Instagram never checks how much their elbows can overextend because they don't care and therefore would answer "no, I don't have EDS" on a survey.
ah, but we're talking about officially diagnosed cases here.
All of my "official" diagnosis were sought out by deliberately describing symptoms to doctors
"This is a diagnosis with clear physical markers. Stuff like 'your elbows overextend more than 10 degrees.'"
Sure. Unlike stereotypically “fashionably vague” illnesses, EDS can be confirmed by hard-to-fake (which is usually what we want when we demand “objective”) testing, genetic or physiometric, in particular the low-cost, low-tech measurements of Beighton scoring.
But then, who decides which measurements reflect illness rather than benign variation, and is their decision right?
Since range of motion depends partly on practice, how likely is it that some non-hypermobile people train themselves into higher Beighton scores in order to get more sympathy or at least a label for their life's frustrations? I think even very frustrated people are unlikely to choose artificially increasing their Beighton score as a way of avoiding responsibility for their problems, but I can't be sure it never happens.
And I can't be 100% sure that, just because I matched the physiometric requirements for EDS, and I find my body a moderately uncomfortable place to live, that I "really have a real thing called EDS". Maybe my hypermobility is benign, my slight skin oddity merely cosmetic, neither a sign of significant connective-tissue problems, and some other coincidence, like atopy or mere whininess, explains my perceptions of physical discomfort. Nonetheless, "EDS is probably a real thing and I probably have it" seems less absurd than the alternate hypotheses available to me, which had managed to grow quite absurd indeed.
Beighton score + discomfort are not sufficient for an EDS diagnosis. You're much more likely to land in the vague territory of "hypermobility spectrum disorders" with me. https://www.ehlers-danlos.com/2017-eds-classification-non-experts/framework-classification-joint-hypermobility-related-conditions/
A geneticist diagnosed me with EDS based on additional factors like skin involvement. "Physiometric requirements" may also include skin measurements, in addition to goniometry, and did in my case. My skin measurements also exceeded the threshold for EDS according to Howard P Levy's protocol for reducing EDS false positives.
It is true that I lack an identified gene for EDS, so I suppose we could invent a category like "hypermobility with EDS-like skin involvement" and stick me in it to avoid slapping me with the EDS label, but, as of now (and it could change! – the boundaries have changed a few times already!), the skin signs put me in the "EDS" category.
(Edited to add: I don't mean to keep advertising Howard P Levy's diagnostic protocol in these comments. I never met him, only had his measurement protocol used on me by the medicos who did my measurements. But precisely because the boundaries of EDS are disputed, it seems relevant to mention the boundaries used to categorize me, especially for the joint and skin measurements, which should be harder to fake than patients' self-report.)
Oh, ok! It wasn't clear to me from your previous comment that you'd been diagnosed - sorry about that.
Yeah, any clinical diagnosis is going to have fuzzy boundaries. We've had a rule-in genetic test for classical EDS for decades - we can validate the clinical diagnosis with near-100% certainty - and even so, the clinical criteria *still* only capture about 80% of the people we *know* have it. https://ehlersdanlosnews.com/news/diagnostic-criteria-classical-eds-may-need-update/?cn-reloaded=1
Right. My official diagnosis is something like "hEDS with skin involvement", to telegraph that that I lack a known gene for cEDS, though physiologically, I present more "classically" than many diagnosed with hEDS do. Compared to the most flagrant cases of cEDS, of course, my presentation is quite mild!
Yeah - EDS is a spectrum condition and it's pretty hard to fake stretchy skin all over *your entire body*
Very interesting.
My (cisgender) spouse has EDS -- diagnosed after a lengthy process involving multiple doctors and ultimately a geneticist.
My (transgender) daughter has not been diagnosed, but is similarly hypermobile, prone to subluxation/dislocation, etc.
And another of our children, while undiagnosed, is pretty obviously "on the spectrum" in the area formerly referred to as Asperger Syndrome before that diagnosis got merged into other autism spectrum disorders.
My takeaway from the EDS/autism link: Yay. I get to blame my wife for all the kids' problems. On the other hand, she's also obviously the reason they're good-looking, so ...
Oh, I forgot to mention: Neither I nor my spouse nor the son use Instagram. I don't think the daughter does either. I'm probably the most social-media-active of the family.
The fact that so many conditions that seemingly have no connection are related to autism make me think that autism (which for the purposes of this comment will refer exclusively to the "reads esoteric blogs better than people" autism rather than the "cannot form a coherent sentence" autism, which may or may not be the same condition) is less an actual condition and more just a result of adapting to many small, sometimes difficult to describe dysfunctions. From personal experience it seems that autistic people, myself included, suffer from numerous weird maladies that have nothing to do with social interaction.
Gut inflammation, weird skin conditions, extreme/non-standard effects of common drugs like caffeine, joint problems, food intolerances, gender dysphoria, body dysmorphia, circulatory issues, epilepsy/other neurological disorders, psoriasis, kidney disease, sleep disorders etc. It's a weird constellation of health problems that seem particularly concentrated among autists. Not that everyone has all of these conditions of course, but every autistic person I know has at least 3 of these, and I'm struggling to think of one non-autist I know that has more than two.
John below me mentions vaccines, but I don't think that's the cause. I imagine it's something more like when you crash a car in such a way that it doesn't run quite right anymore, but not in such a way that you can point to anything specific. Yeah, it's clunkier than before, and it doesn't have quite as much zoom to it, and oh, yeah, that belt makes a clicking noise, and the oil seems to disappear a little quicker than it should, but hey, it runs, right? The issue with the car isn't anything particular, everything about it is just a little bit broken. To me, that's what autism feels like, both from an internal view, and from viewing others.
As to what the crash was: Who knows? Personally, I'd lay the blame at all those different things we know are bad for us and continue to do, particularly those that started becoming more common since around 1980 or so, since the cohorts born after then seem to have the problem much more frequently. Antibiotics ruin gut microbiomes, and yet we consume unreasonable amounts of antibiotics through our food. Then there's plastics, which even if the effects aren't extreme surely cause some amount of damage during the vulnerable years. Throw in horrible foods, a lack of physical activity, and staring at a screen for inordinate amounts of time and yeah, I have no doubt that our bodies are just a little bit broken everywhere.
I have not heard of an analogy like this being used to describe autism (of the Aspergers-as-was kind) before, but it seems immediately plausible. Pure observation alone (of an autist I am close to) lends immediate support to the idea.
One thing this does not cover is the tendency for these same people to think differently and yet frequently deeply insightfully and fruitfully about topics that interest them. Systems that have errors introduced into them generally generate more errors. But that does not hold true for many higher-functioning autistic people who can cheerfully run rings around neurotypicals when it comes to complex thinking in their fields of choice.
I'm going to ask my own sample of one about this first chance I get. Thanks for introducing the concept.
In the meantime, are there any other autistic people out there who might like to comment on their own subjective experiences and how they align - or not - with this idea?
I’ll bite. I’m basically the prototype for this article, being 1) transsex (I prefer this term) 2) autistic 3) have ADHD 4) have allergies 5) have sleep problems 6) have a health condition related to EDS but don’t have hyper-mobile joints. That said, if you met me on the street, you’d see me as nothing more or less than a woman. Just one who’s definitely a huge nerd.
I despise all this “trans attention” and was fairly unpleasantly surprised to get this ACX email, so I’ve been anxiety-scrolling through the comments hoping they aren’t too hateful. Your comment made me pause, though; those who know me well would probably agree with your autism description as describing my particular “flavor” of autism well. I enjoy complexity, and have no interest in tradition if it doesn’t serve the present or contradicts new information. This all makes me excellent at my technical line of work, the friend you can count on to give you extraordinarily specific and generally helpful advice, and… “too much” for most people. It needs to be said that this particular cluster of neurodivergences, health-related problems, and severe gender dysphoria can be really damn lonely. They’re stigmatized individually in many brackets of society, including sometimes by the very doctors we need to help us. Having several just makes it much worse.
You might find it informative to research the “Social Model of Disability” versus the “(Bio)Medical Model of Disability”. Traits that are advantageous in one time and place may be impairing in another. In a hunter-gatherer tribe, many autistic traits are much more of an asset; I’d argue no neurotypical person can really compete with an autist hyperfocusing on one of their lifelong “special interests”. Consider if that special interest is finding edible plants, or making fishing hooks out of wood. Our sensory overwhelm in cities becomes high environmental sensitivity out in nature.
I would also argue trans people defying strict categorization into either the social or biomedical models is the source of much prejudice and confusion. In an androgynous world, I would have still had severe physical dysphoria (and I did, from my earliest memories). But in a world that celebrated rather than hated that difference, life would have been substantially easier.
Not explored in the article is the confounder of complex trauma, which is also heavily associated with executive dysfunction, social difficulties, sleep disorders, autoimmunity and more. It’s not a particularly controversial statement that non-traumatized autists essentially do not exist, at least in Western countries. The situation isn’t much better for trans people. At a minimum, our exceptionally high rates of complex trauma may explain our elevated rates of mental illness, particularly depression and anxiety. Who wouldn’t get depressed when your own species rejects you for existing? And yet, we have many gifts to offer, if only the rest of humanity would try a lot harder to understand.
[Side note: “functioning” labels have been obsoleted like the term “Asperger’s”; autistic “functioning” can vary temporally and situationally, and stigmatizes those who mask their autism less (the Internet is littered with longer and far more detailed explanations).]
Thank you for your long and thoughtful response.
Two brief points in reply: anxiety scrolling probably isn't necessary here as most ACX-ers are decent if occasionally outspoken people.
And secondly, I did choose my phrasing carefully regarding the way I couched the term Aspergers, if you care to go back to the original post. The three autists I know best (and I genuinely do know them quite well, even though I am absolutely aware I do not 'know' their experiences, obviously) all prefer and continue to use the term 'Aspergers', even though I understand not everyone agrees with this.
Sometimes it's tricky to avoid getting caught between a rock and a hard place regarding terminology, especially as an outsider.
I wouldn't beat yourself up about it. The reality is that there is a need for precision when discussing the topic, and lumping together a massive spectrum under the range of "autism" while explicitly eliminating terminology meant to differentiate points on that spectrum is, to me, one of the worst things that can be done "for" autists.
I know for a fact that autistic functioning can vary (that's my own experience for sure, and part of what has sparked my interest in environmental impacts on autism!) but that doesn't mean there isn't a fairly reasonable split between Aspergers-esque autism and more extreme instances. Is it a difference of degree rather than kind? Maybe, but so is the difference between starvation and gluttony.
I'd accept effectively any terms to make the distinction, but the distinction must be made.
"It’s not a particularly controversial statement that non-traumatized autists essentially do not exist, at least in Western countries."
I've never heard the idea before. The usual idea is that autism is fully genetic.
It may well be genetic, but if it results in people not fitting in with their peers/families, being misunderstood, and being blamed and punished for rudeness when they didn't intend to be rude and don't understand what they should do differently next time, then it seems reasonable that it could near-universally lead to trauma (depending on quite how you define trauma).
It's possible that autistic people with at least one similarly autistic parent would do better. I don't know whether this has ever been studied.
"transsex (I prefer this term)"
Please excuse me for laughing, but it looks like we're looping around to the "Don't say 'coloured people', that is a slur, say 'people of colour' instead".
I was given to understand that the former term "transsexual" had fallen out of favour and indeed was being regarded in the area of being a slur, and transgender was the new correct term. Now we're going to "don't say 'transsexual', say 'transsex' instead"?
No. People are allowed to have individual preferences about what they're called.
In this particular case, a subset of trans people don't like the implication that our condition is about "gender" for various reasons, and a few members of that subset have held on to the words "transsex"/"transsexual" despite the broader group's effort to taboo those terms.
Like the debate over "queer" in LGBT circles, or as I seem to be getting into it, "functional" in regard to Asperger's/autism?
More like "Asperger's" (older neutral term still used by a minority of the group for themselves) than "queer" (older slur being 'reclaimed' and used as an umbrella term for the whole group, including people who prefer not to use it for themselves) or "high functioning" (term which is perceived to insult people other than the ones it describes, and is also disputed on grounds of accuracy/precision by many of the people it's applied to).
" “functioning” labels have been obsoleted like the term “Asperger’s”; autistic “functioning” can vary temporally and situationally, and stigmatizes those who mask their autism less"
And that notion of "stigmatising" stigmatises those of us who weren't fortunate enough to be diagnosed at an early age (or ever) and have had no choice but to learn to be 'functional' - it tells us "you're letting the side down, you're not properly 'on the spectrum', how dare you claim to be Asperger's as if that makes you special and different from the rest of us, if you haven't had a public meltdown can you even claim to be autistic?"
It really is great that people are being diagnosed, and getting treatments tailored to their needs, and getting accommodations, and getting recognised. It is not great when this kind of sniffiness about "complex trauma" and "you are stigmatising other autistic people by not living down to the stereotype" is used against us, the people who have had to live with "I can't in reality scream SHUT UP SHUT UP SHUT UP at my work colleagues when they are speaking in normal voices at normal pitch, I have to knuckle down and get on with it, sensory processing issues be damned".
Because we don't have the piece of paper from the doctor saying we have needs, and so the lucky ones who do have the Official Certificate can go fuck themselves when finger-wagging at us for not being Proper Autists.
I realise the above is very aggressive, but I'm just tired. I've been doing this for decades, and I'm tired.
Because there is a real gap between the theory and the practice, and despite all the yap about recognising autism and the support bodies and national publicity, in effect unless you have the Magic Piece of Paper with the official diagnosis, and you are in a particular socio-economic class and working in the exact kind of job where they're happy to let you wear noise-cancelling headphones because what they require you to do is hyperfocus, don't talk to anyone else, and just work on this one task for hours, you're shit out of luck.
It's happened to me that I played music at work - at a low level, and a classical music station - to help with the whole exterior noise bit, and the boss came around and took the speakers off the PC because Distraction. (To be fair, that was for *everyone*, not just me, because we have to hear the phone ringing and answer it, if people come to the reception door, etc.) So the third time at various jobs this happened, I got the message. Can you imagine if I asked to wear noise-cancelling headphones?
All because I don't have the Official Diagnosis. And trying to get one at my age is worse than pulling teeth. I have an entire rant about my experiences with the medical system, mental health services included, but that's not useful to recount here. Just take it that even if there is help available, I can't access it because I'm too old and - ironically - too functional (having been forced by circumstances to be functional or at least pull off a convincing facsimile of same).
So, let's agree that I *am* complexly traumatised. So what? That and ten cents will get you a cup of coffee as the saying goes. I don't have any choice but to struggle on, being "functional" as best I can in public for the limited time I need to pull it off.
So the whole "don't talk about functional please, that stigmatises those of us who can't do it!" rubs me up the wrong way because where is the support for us, the ones who can't get away with not being able to pull it off? From our own peers, or those who should be our peers? Telling us that in fact we shouldn't be functional, that is colluding in our own oppression or something?
I'd love not to have to 'mask' or whatever the inner circle jargon is, but I don't have that luxury. I have to keep on pretending, because there isn't the support or safety net to let me relax and stop.
Deiseach: PM me; I may be able to help if you're pursuing a diagnosis. Good luck.
A maybe-interesting comparison I can think of to the usefulness of autism is my own experience on stimulants. I originally got put on them due to an inability to focus on my work. They were effective at alleviating that, but they were accompanied by a strange shift in my emotions and personality.
I became distant and cold, and not in a "Tough luck, kiddo" kind of way, but in a "I literally could not care any less about the fact that your family just died, please pay up" kind of way. Emotions became flattened and basically non-existent beyond mild annoyance and mild satisfaction.
Was I productive, effective, and could have lived my whole life like that? Sure. Do I consider myself to have been "broken" during that time? Absolutely. I have no doubt it would make me more accomplished, but I was distinctly lacking in basic aspects of humanity.
I see autism as similar (though very different in the details.) Some sort of shift in -something- whether that be dysfunctional body systems, brain chemistry, or whatever else, breaks people just a little in various ways, and the adaptive routing around the faults is what we call autism. I wouldn't want to give up my autism, frankly, but I can't deny my life would have been objectively better on almost every metric if I had been a bit more "normal."
"I became distant and cold, and not in a "Tough luck, kiddo" kind of way, but in a "I literally could not care any less about the fact that your family just died, please pay up" kind of way."
I have that, but without stimulants, which makes me wonder if going on stimulants would instead trigger the "I cry over kittens and sunsets" type of reaction?
This is part of why I get into fights on the Internet with strangers and come across as aggressive and uncaring - I don't care. People recount heartstrings-tugging story and I am *supposed* to react in the appropriately emotional way, but my strings remain unmoved and I *don't* go "Oh, now you have touched my feelings, I totally change my opinion of the entire matter!"
Nope, argue me out of it but don't rely on "This makes me sad, doesn't it make you sad, too?"
That's also why things like "people only have negative opinions on LGBT matters because they can't personally apply the situation to themselves, once they know someone who is LGBT they change their mind" doesn't work on me. Now I'm supposed to shift my views because I am mildly acquainted with you and I don't want to be rude or inconsiderate (where "rude and inconsiderate" means "you don't agree with me") because that might make you uncomfortable? I don't care and you can't make me.
Thank you, Matthieu. I know that I am hypersensitive to anything that smacks of emotional manipulation, possibly because of being 'on the spectrum' and not getting social cues well and having problems with that, and possibly because of attempts by various people in my past to use emotional blackmail/elicit particular reactions out of me. So defensively I have reacted by being very flat of affect and going "Oh, really?" whether the story being told is one supposed to make me horrified, angry, sympathetic, enthusiastic, happy, or whatever.
That's why I go for the confrontational "yeah yeah your poor fee-fees, but what are the *facts* of this situation?". Unhappily, I do find aggression the easiest emotion to access, which is something I do have to be careful about - I can come across as aggressive/angry even when that's not what I intend.
Chirping in to add: Directness and being confrontational aren't valued enough in today's society.
There are times I wish I hadn't bothered to learn the social niceties of pretending to care about other people's emotional shit. Would that I could just say to so many people: "The world is hard and unfair and I would absolutely be willing to help you with whatever your next steps are, but I don't really care about the bad stuff that happened to you."
But here I am with a relationship management / sales career, an autism diagnosis, and a really well tuned set of social programs to "relate" to people. Thankfully working from home lets me be me and I only need to run the program for an hour or two at a time.
"I became distant and cold, and not in a 'Tough luck, kiddo' kind of way, but in a 'I literally could not care any less about the fact that your family just died, please pay up' kind of way. Emotions became flattened and basically non-existent beyond mild annoyance and mild satisfaction."
This happened to me for the three months I tried hormonal birth control (a levonorgestrol-dispensing IUD). I was more focused, but unable to relax, appreciate beauty as much, or feel as much sympathy. Just annoyance at anyone impeding my productivity.
The creepy part was I didn't notice that clearly or attribute it to the IUD until I got it taken out due to physical pain despite being placed correctly. Then over three days, my normal self gradually came back.
I think autism is chromosomal, and so are all of these related conditions.
https://www.economist.com/science-and-technology/2023/03/08/studying-broken-chromosomes-can-illuminate-neuroscience
// Quote Because Maybe Paywall //
>Dr Berman works on part of chromosome 7, the deletion of which causes Williams syndrome, identified in 1961 by a doctor of that name. Dr Bearden works on DiGeorge syndrome, likewise eponymously identified in 1968, and caused by a deletion of part of chromosome 22. Both have counterparts, noted more recently, that result from an extra copy of the labile chromosomal section. As the two researchers explained, comparing the under- and over-representations of these sections has deepened understanding of the neurological roles of the genes thereon.
>People with Williams syndrome have a range of symptoms. Some are anatomical, such as a characteristic face shape. Others are behavioural—a tendency to be talkative, to be sociable, to be good at recognising faces (though otherwise poor at visual-spatial tasks) and to have good empathy with others. In essence, these are the opposite of autism. Those with the syndrome’s converse, known as Dup7, have a different face shape. They also learn to talk later than normal, are bad at recognising faces (though otherwise good at visual-spatial tasks), and are unsociable. These latter traits are those associated with autism.
>Dr Berman has shed light on the role in this of two genes, GTF2Iand LIMK1, found in the affected region. GTF2I encodes a type of protein called a general transcription factor. Transcription factors initiate production of RNA copies of genes that then act as instructions for making proteins. As that suggests, GTF2I is involved in many such initiations, which may help explain Williams syndrome’s disparate manifestations. LIMK1 encodes an enzyme known to be involved in brain development.
Hard copies
>Dr Berman and her group have demonstrated correlations between the “doses” of these genes (whether there are one, two or three copies) and the sizes of affected brain areas. Magnetic-resonance imaging (MRI) showed that the brain’s total volume increases with the number of copies of the affected chromosomal region (so is smaller than normal with the deletion, and larger than normal with Dup7). But all of this growth happens in the biggest part, the cerebrum. In the second-biggest part, the cerebellum, the reverse happens.
>She has now narrowed things down. Within the cerebrum, she has found, the amount of grey matter in an area called the intraparietal sulcus, which is known to be involved in visual attention (and thus visual-spatial awareness), is dose-dependent on LIMK1. In contrast, the volume of another area, the insula, which has been linked to emotions such as compassion, is dependent on the dose of GTF2I. Those findings nicely match genes to brain function.
// Quote End //
If autism is related to Chromosome 9 and Williams Syndrome/Dup 7, if it is basically a minor but similar form of Dup7, then maybe all of these other issues come somewhere from the Chromosome 7 aswell, which is basically the Genetics explanation from Scott but in different.
People have collected quota a lot of genetic data for ASD - check out the MSSNG and SPARK projects - and as far as I know haven't found that kind of bias for chromosome 7 that you postulate.
Thanks. Fascinating comment.
My recollection is that that the first high-functioning autist (he got into Caltech and immediately flunked out due to doing things like writing dates in history papers in Base 8) I ever met was not until I was 14 in 1973. The next year I became friends with another extreme nerd, but a happier one, the son of a famous sci-fi novelist and home computer aficionado, who memorably pointed out to me that the rise of computers would be making life better and better for people like him. One of my regrets in life was that I had to turn down, due to a schedule conflict, his invitation to go with his family to the national sci-fi convention in Kansas City where they'd be giving Robert Heinlein his lifetime achievement award.
It could be that I just didn't notice all the on-the-spectrum kids I had met before then. But I'm pretty observant and was fascinated by the two I met in 1973-74. For instance, when I became the high school newspaper editor in 1975, I made sure to write about the second one frequently as a striking character on the campus scene.
So, my admittedly untrustworthy impression is that this type of personality found so often among Scott's readers is more numerous today than in even the not very distant past when I was young.
Why?
Beats me.
It could be due to some kind of insidious poisoning as Mike Patton suggests. Or it could be a more positive process: that new technology and the new modes of thought necessary for the new technology called forth the new personalities.
I'm reminded of a touching passage in William Patterson's 2011 biography of Heinlein, in which that suave officer and gentleman takes over the 1941 sci-fi convention called in his honor and instead takes great pains to be a genial host for his awkward nerdish fans and reassures them, improbable as it sounded, that _they_ were the wave of the future. Patterson wrote:
[Heinlein] was probably the most sophisticated and cosmopolitan person the fans had ever come into contact with, and he seemed to them like something out of a movie….Science-fiction readers in 1941 were social outcasts. To be told -- seriously -- that they were personally an important element in human progress was apparently…intoxicating for them.
It's probably not coincidental that the peak of Heinlein's brilliance as a short story writer was 1959's "All You Zombies," in which transgenderism and a time machine justify utter solipsism.
I appreciate the added perspective, and it certainly aligns with what I hear from others who have lived long enough. The idea of the autistic personality being an emergent force, the response of humanity to the sci-fi world we now inhabit, is one I like. I think to some extent it's compatible with my own, to some degree, especially if the autism is a result of -adaptations- to the pains of the modern environment, rather than simply a direct result of their influence.
I think of an alternate world, one where computers turned out to be a bust but something else, say witchcraft, that appeals to a different type of person turned out to be real and vital for advancement. Would the western world have a newfound cohort of "witchy" men and women, prone to spiritual ramblings and overconnectedness, spring up in response to society's needs? Perhaps then we'd be discussing so many witches are left-handed rather than why so many autists have digestive issues.
I'd read that novel.
I think it's just down to recognition. When I was in what you Americans call middle school, dyslexia was not a thing. Yes, it existed and was a recognised condition, but in general use? No, not even in schools. You were just stupid.
Then it became something that was widely known, and now you weren't stupid if you tested for dyslexia. Now there were more diagnoses. If you compared the 70s (when I was a kid) to the 90s, you would have been saying the same thing: where did all these dyslexics come from, what's causing it?
Same thing with autism. The really bad cases (the bash your head against the wall ones) would have been in institutional care. The functional weirdoes? Well there have always been weird people, but they sit quietly in class, don't cause trouble, do their homework and pass the tests. Leave 'em alone. Maybe they're just shy. They'll grow out of it as they get older and go off to work.
Then the diagnoses came in, and at earlier ages, and now its "where are all these autistics coming from? what's causing it?"
It's hard to say about Heinlein stories. Solipsism turns up here and there in his work, including in _Beyond This Horizon_, an early novel with a lot of interesting stuff in it, but not a particularly good novel.
So does transgenderism and wanting to be a woman. I'm thinking especially of Andrew Jackson Libby, who first appears as an extremely shy young man, a fast intuitive calculator, and probable autist ("Misfit"), later a genius mathematician(_Methuselah's Children_), and later still, much happier as a woman (_Number of the Beast_).
"All You Zombies", is a total fav. of mine.
Consider the hypothesis that autism is a constellation of symptoms all caused by impaired detoxification. Vaccines are only one possible exposure --water, air, food, etc all introduce toxic elements which is a problem if one's body can't get them OUT.
Is autism less prevalent in the mountains?
Quick eyeball check says "maybe, but not very obviously." https://journals.plos.org/ploscompbiol/article/figures?id=10.1371/journal.pcbi.1003518
Being at moderate elevation in the Great Plains east of the Rockies actually looks better than being *in* the Rockies.
I think the strongest match for that geographic pattern, in terms of "indirect indicators of possible pollution sources," is precipitation. More specifically, winter precipitation. http://www.bonap.org/Climate%20Maps/ClimateMaps.html
Interesting. It will be confounded by genetics and trade patterns (useless to live in Colorado if the contaminants are in avocadoes from California ) though.
"Personally, I'd lay the blame at all those different things we know are bad for us and continue to do, particularly those that started becoming more common since around 1980 or so, since the cohorts born after then seem to have the problem much more frequently."
I don't know about that, my paternal family have the signs of 'being on the spectrum' going back generations and they weren't imbibing the current things (probably an entire set of different 'things that were bad for you in 1900').
I think that folding in Aspergers with autism was a bad move, and that instead of cramming a ton of things in under the autism umbrella, we need to differentiate *more*. There's the "syndrome where you're fitted for a job in Silicon Valley" variety, the "chew your own fingers off" variety, the "socially weird and awkward and some of these physical traits" variety, the "look at my many weird maladies all in a bundle but otherwise I'm functional" variety, etc.
There might well be splitting off "well this isn't autism per se, it's a new condition we have to give a separate name for in the next issue of the DMV" if that were done, and I think it would actually be beneficial.
I absolutely agree, especially if those things actually have different underlying physical causes, and I'd be surprised if they don't. You make a good point about the genetic autism, and I definitely think that is a similar and different condition.
Makes me think of something I've been mulling over for awhile. I live in a rural area of the US that was settled by North Germanic settlers in the early 1800s, and has had an extremely low amount of immigration in the time since. Most anyone who hasn't moved here in the last 20 years can trace their family back to here for at least 4 generations.
They're different. They talk different, they think different, and it's in ways that are hard to put my finger on, but more or less sum up to mild autism. Friends I've brought here have said:
"Why is everyone here so -weird-?"
"Is everyone here autistic?"
"It's like the people here are from another planet"
Among other issues, our area suffers from the problem that all the native drivers drive the speed limit. Not 5 over. At the speed limit. Drives anyone from other areas wild.
There's definitely a genetic component to the autistic personality, and it certainly feels different than the autistic types I was referring to in my original post as broken. Here's hoping for a better type distinction one of these days.
I think Asperger's *is* a different thing, and it should never have been lumped in, but that was as much a political decision as anything else (all the parents of autistic kids who give their kids the Miracle Mineral Solution aren't evil abusers, they're just desperate people who want their kids to have a normal life. The guy who invented the scam, on the other hand, should get the tortures of the damned).
"Driving at the exact speed limit" does sound Aspie, to me 😁 And if everybody in the region does it, then there's no reason to change! This is their local society and they fit in, what's the problem? Take your foot off the accelerator, leadfoot!
https://www.youtube.com/watch?v=JvrpYC9C_Ic
Drinking bleach is very likely to impact the intestinal flora on the other hand. Not defending quackery, just speculating.
I have this image in my head that transgender women are really into dancing. Perhaps there's a cause/effect thing going on. Where joint mobility is corellated with dancing, and being transgender is corellated with joint mobility.
For me, when I try to touch my radial with my thumb, I have a 90 degree gap. My maximum wrist to hand angle is less than 90 degrees.
or maybe dress go spinny
There are two wildly different main sets of transgender M to F's: highly effeminate boys vs. masculine boys with the autogynephilic fetish. The latter, who tend to be high IQ and intellectually aggressive, are probably not into dancing to an above average extent.
There are other forms of structured body movement I enjoy - some types of sports, swimming feels natural even if chlorine stinks, it's fun breaking down pallets of goods - but dancing has always seemed inexplicably silly to me. I guess it's elegant in the way any highly-orchestrated coordinated endeavor is...but if I find myself compelled by music to move, it's in the fashion of pretend-conducting, headbanging, or tapping along to a sick beat. Not cutting a rug. (Also, modern degeneracies like "twerking" have really cheapened whatever modest appeal existed in the first place. I remember when "dance music" meant stuff like tango, not whatever subgenre of house music is the current hotness...)
But then again, I'm not upwardly joint-mobile either, so perhaps that's the better correlate.
There’s ballroom culture, which was especially popular in the 80s/90s, and recently came back into the mainstream spotlight recently with the TV show “Pose”. That culture invented “voguing” where many of the moves and people were hypermobile
I have EDS, am not trans.
With EDS, the joint issues are the most salient, however the condition impacts tissues across the body. Muscles, digestive track, blood vessels, skin, eyelids, etc. Everything is kind of gooier than it should be. Also, most people with EDS are diagnosed later in life, like in their 20s or 30s. So you have this weird body, that isn’t like other people’s bodies. You know your body is different because you can’t do the things peers can effortlessly do, yet you can do things peers find impossible.
Medical professionals are not trained to diagnose EDS, for the most part. It is a rare condition. They are trained to think horses when they hear hoofbeats, not zebras so when you describe your symptoms, medical professionals look at you dumbfounded and start working on more common problems. (The EDS advocacy organization mascot is a zebra for this reason.)
So when doctors don’t diagnose you with EDS, but you know something is wrong, what can you do? I can see a scenario like the following with someone with EDS playing out: Start reading stuff online. There is this thing called trans? Where I’m in the wrong body? Yes. My body is not right. Sign me up. There is treatment? Great. Sign me up. This will take care of these strange issues plaguing my body? You call it gender dysphoria, doc? Ok. Let’s start the treatment. I want my body to be normal.
So I guess what I’m trying to say is:
The patient knows something is wrong with their body.
The physician want to help the patient. The physician is aware of gender dysphoria but not EDS, so the EDS diagnosis is missed.
There is a treatment for a condition, gender dysphoria, that can seem like EDS.
So people are getting treated for gender dysphoria, which they may not really have, but not for the underlying EDS.
Notes: there are many types of EDS, hypermobile being the most common. There are genetic tests for many of the types, but to my knowledge, there still isn’t an agreed upon test for hyper mobile EDS. It’s based on symptoms.
There really isn’t much treatment for EDS. It’s managing symptoms. Your body tissues have been built to a given specification. Short of some science fiction stuff, you aren’t getting all new skin, joints, muscles, blood vessels, etc.
This. So this.
Being born male with EDS means noticing you're father away from the robust masculine stereotype than other boys are. Plus, EDS *can* (does not have to) come with gracile, Marfanoid habitus that codes as more "feminine".
Being born female with EDS? A common experience is that "becoming a woman" (going through female puberty) with EDS *hurts* – it feels "wrong" – but everyone's inclined to pat teenage girls with undiscovered EDS on the head, telling them either life is just like this for every woman (making womanhood as such seem rather less desirable), or they're "attention seeking", or have a psychosomatic problem...
And, if those born female with EDS do transition to male hormones, androgens build joint-protective muscle which really does help control EDS symptoms. Plus, boosting the "confidence hormone" (or, if you like, "arrogance hormone", testosterone) in someone socialized to continually doubt one's experience of one's own body might also help.
As I recall, there was a comment in a previous thread about how a girl with severe EDS is, in effect, getting aged rapidly so that they never *look* like a pretty teenager which is a serious social problem in addition to the pain level.
Yes, the skin involvement (scarring, sagging, and so on) can leave a gal feeling prematurely beaten by the ugly stick. Cosmetic symptoms of EDS are variable, though, so being outstandingly pretty isn't proof someone doesn't have EDS.
Since children are often promised their won't accumulate noticeable scars unless they pick at them, and absorb conventional wisdom that striae and cellulite should only happen to those who let themselves get fat, I found that much of the shame over appearance had a moral dimension. I was conspicuously scarred by chicken pox for a good, long while, and told it was just the consequence of "having picked". I hadn't picked. But who could get that scarred without picking? So the grownups around me simply assumed I'd picked and couldn't admit it. Similarly, since not getting fat in the first place is supposed to protect against sagging, cellulite, and stretch marks, a teen girl marked with those things outs herself as a "fattie" even if she isn't. My skin would scream THIS CHILD HAS NO SELF-CONTROL even when I did. So fun to be a teen whose skin is a scarlet letter she didn't "earn"!
Yeah.
Cellulite is a secondary sexual characteristic; you can be a fit 16-year-old girl and still have it. As for stretch marks...that is a crapshoot and EDS increases the risk you'll get them. I got some on my thighs, as a man, at 15 or 16.
Severe EDS is pretty rare compared to the "hypermobile" subvariants. I am hypermobile and do not look older than I am (40s) and am aware I was perceived as attractive in my youth. (I have never sought a diagnosis, but I obviously inherited hypermobility from one of my parents, and one of my kids is also obviously hypermobile.)
What sorts of things were you not able to do that your peers could effortlessly do, and vice versa?
Couldn’t do: hit things overhead without fearing shoulder subluxation. Being careful when running because ankles could roll. Knee pain from contact while running. Standing up too quickly because blood pressure drops.
Could do: Circus freak show tricks! Twisting elbow to make it look like it was broken. Make the namaste hand pose, but behind your back. Able to scratch any part of my back.
Seriously the worst superpowers.
Gotcha! Hmm, some of that sounds familiar to me. I know I used to be able to do the namaste pose behind my back trick when I was a kid, but I don't think I can (or my body strongly tells me not to try) anymore. Thank you!
You’re welcome! Hope this helps! I really identify with your comment “my body strongly tells me not to try”.
> Medical professionals are not trained to diagnose EDS, for the most part. It is a rare condition. They are trained to think horses when they hear hoofbeats, not zebras so when you describe your symptoms, medical professionals look at you dumbfounded and start working on more common problems.
This is a huge problem. Doctors will only give treatments for common conditions. Doesn't matter what condition you have, whether or not you have the condition the treatment they want to give is for, or anything. You get the treatment they think the modal person with at least one symptom in common with you should get.
And if that doesn't work, they make no effort to see what's wrong. Once they've tried the solution to the most common kind-of-similar problem, and it doesn't work, you're incurable and should go bother someone else.
Small nitpick: estrogen often does wonders to alleviate common skin issues, and even absent those, makes "male" skin notably softer, stretchier, thinner. It's not new skin in the way you meant, but it is one of the hard-to-miss changes (to the person undergoing them, anyway). Although if I understand EDS at all correctly, this seems like it'd be an exacerbation of problems rather than a treatment for them? Wonder if that's a common thread among the dissatisfied...
It probably does work fine in the F -> M direction though, at least along this dimension of dysphoria. Seems about as plausible as other proffered candidate causes for rising gender divergence, though EDS is so much rarer than e.g. plastics that it can't be a primary driver. (Probably? Hunting for signal needles in noise haystacks...)
Aren't autism spectrum disorders generally correlated with mutational load? Does EDS show up more often in people on the spectrum than other genetic disorders with a similar number of mutations?
The answer I consider most likely and that will never be politically feasible to investigate is that autism is downstream of mismatched neurological correlates to gender. There is no reason to think all neurological dimorphism in all configurations always causes atypical gender identity, it could also cause autism or other conditions, and the correlation between the two could be because they are different degrees or configurations of the same underlying atypicalities.
"My guess is something like joint issues → poor proprioception → all sensory experience is noisy and confusing → the brain, which is embodied and spends most of its time trying to process sensory experience, learns a different reasoning style → different reasoning style is less context-dependent (producing symptoms of autism) → different reasoning style when trying to interpret bodily correlates of gender (eg sex hormones) → transgender."
As someone diagnosed with EDS in my 30s by a mainstream geneticist at BigHospCorp, with a Beighton score of 7/9 according to protocols designed to minimize false positives (just eyeballing, my pinkies look like they might put me at 9/9, but I don't get the 2 pinkie points with careful measurement), I'd say, yes, growing up in a body whose range of motion isn't as well-bounded away from injury as other people's is does make for more noxious, confusing bodily sensation to keep track of, which can be rather overwhelming.
Also, hypermobile joints → increased risk of repeated sterile tissue injury → increased risk of riling up your immune system basically all the time from accumulation of said injuries = "immune derangement" → cognitive and behavioral effects of immune derangement
And, if you're born biologically female, well... female fertility is inflammatory, menstrual cycles induce bouts of joint laxity, anyhow, which are particularly frustrating for those whose joints are already injuriously lax – and androgens have a GREAT reputation for building the muscle mass that helps protect lax joints!
Here were the protocols used for my Beighton scoring. Interestingly, the physiotherapist who measured me stuck rigorously to these protocols, while the geneticist just eyeballed them (though that may be because the physiotherapist's measurements were already in my file):
https://www.ncbi.nlm.nih.gov/books/NBK1279/
* Passive dorsiflexion of each fifth finger greater than 90°. This should be assessed with the palm and forearm resting on a flat surface, and is considered positive only if the fifth metacarpal-phalangeal joint (MCP) can be extended more than 90°. Ability to extend the tip of the fifth finger to a position proximal to the MCP is insufficient to be called positive if the MCP does not extend more than 90°.
* Passive apposition of each thumb to the flexor surface of the forearm. This should be assessed with the elbow extended and hand pronated.
* Hyperextension of each elbow greater than 10°. This should be measured with a goniometer, with the hand supinated, elbow fully extended, and shoulder abducted to 90°.
* Hyperextension of each knee greater than 10°. This should be measured with a goniometer, with the patient standing and knees fully extended.
* Ability to place the palms flat on the floor with the knees fully extended. This should be assessed with the knees locked in extension and the feet together, and is considered positive only if the total palm of both hands lies flat on the floor just in front of the feet. Slight flexion of the knees, spreading of the feet, failure to get the heels of the palms to the floor, and positioning the hands more than a few inches in front of the feet are common causes for false positive scoring of this point.
If you have small sample sizes an exact Fisher test might serve you better than chi square, even though it probably won’t make a big difference.
or the Psi test as described by Jaynes, but yeah, in my experience, not a big difference.
Perhaps the connection goes something like connective tissue disorder is related to peripheral neuropathy which is related to not feeling comfortable in your own skin and/or changes in the brain which is related to feeling trans?
The first time I heard about EDS was from reading Will Powers talk about seeing it in his trans patients, like you mention (I'm trans myself). I decided to run through the Beighton criteria myself and I seemed kinda... borderline? Though there are other types of hypermobility, in e.g. cardiovascular and intestinal, that I had that I found myself thinking if this was a thing with. It's been an interesting lens to see some of my health problems through though; I found out about mitral valve prolapse through learning about EDS, noticed my last EKG strongly indicated it and that it can cause the dysautonomia I have, and now I'm going to get an echocardiogram to see if I have it.
But also I worry if I am psychosomaticizing it, just by hearing about it? I wonder if there's data on base rates of hypermobility in the population.
There are data on base rates of hypermobility in public school children in several different countries, including Denmark and the UK. UK researchers suggest requiring a higher Beighton score from teens in order to count as pathologically hypermobile, and I believe Danish measurers advised that high Beighton scores aren't useful for predicting later problems until after about age 10.
https://www.ucviden.dk/ws/portalfiles/portal/124335969/Junge._Inter_tester_reproducibility_Beighton.pdf
https://pubmed.ncbi.nlm.nih.gov/21547894/
If you're eyeballing your Beighton score and it seems borderline, there are procedures for reducing false positives. Howard P Levy of Johns Hopkins describes his somewhere here:
https://www.ncbi.nlm.nih.gov/books/NBK1279/
Since people often can increase their range of motion through practice, it may be possible for some to deliberately train to achieve a pathologically high Beighton score. But I suspect most people, including those who wish they had a neat, objective-seeming label to blame whatever problems they think they're having on, wouldn't be motivated enough to stick with the training required to hyperextend their joints far enough to achieve an "impressive" score. Plus, if someone did manage to train from a naturally low Beighton score to an "impressively" high one, that person has now *learned* a range of motion that increases risk of injury. I suspect that people with learned hypermobility are more likely to be dancers and gymnasts, people whose wide range of motion is regarded as signaling prowess and who aren't trying to injure themselves, rather than malingerers so hellbent on making excuses for themselves that they're fine with artificially increasing their risk of injury.
Not hypermobile, but MTF trans and diagnosed with dyspraxia as a kid. If there's also a dyspraxia trans correlation that would add weight to the proprioception idea
EDS rivals DID in scope of TikTok contagion
The title of this is phrased as a question, but I'm not sure it is intended to actually solicit guesses. The paragraph with all the arrows in it might be simplified and made more blunt as follows. "Misfits have fewer incentives for fitting in." I'm not sure you could call this a steelman of your more nuanced take. This would also explain why we don't see a representative sample of conventionally attractive people becoming trans. Phrased baldly like this, it might seem prejudicial, but it is a statement about privilege and how people respond to not having as much of it. Anyone can observe that maximally fitting in to gender stereotypes takes a lot of work that is easier to do if the incentives are good.
Not only do misfits have fewer incentives for fitting in, they're also less able to fit in.
That's true, but I've known some very attractive people with EDS. I was presuming mindset effects. But maybe that's what you meant.
https://www.bbc.com/future/article/20230302-can-dyslexia-change-in-other-languages
Someone who has a lot of trouble reading will also have trouble fitting in socially.
It's very tempting to make a model like this, and certainly many of the trans people I've met fit the "didn't do so well as X, am now more successful as Y, relatively if not absolutely". Or the other way round. I think this captures a large majority of trans experiences. There are lots of societal punishments for failing to conform to gendertropes - but punishments are only one half of incentives, generally agreed to be the less long-term motivating as well. Whereas the rewards are obviously weighted very differently for cis vs trans people!
The ones that haunt me are the few who actually were "conventionally attractive people" prior to transition, at least as seen from the outside. Some different mechanism at work there...
Well, hold up, that might be a bridge too far, or at least that isn't quite what I meant. What I was talking about is the lack of positive incentives. Not so much punishments or incentives for switching teams. I don't think most people who undergo such big transitions are motivated by the prospect of reward. But just to think about how hard people have to work at fitting in and being beautiful women or rugged, handsome men. If someone feels that she has absolutely no hope of achieving this, why would she continue to try? Her outcomes will improve if she stops and not because she becomes a successful man, but just because she is no more comfortable being who she is.
Sorry, I coulda worded that more specifically:
*Positive incentives = rewards, intrinsic motivation, social approbation, favourable cost-benefit ratios, surcease of pain/discomfort
*Negative incentives = punishments, ugh fields, social condemnation, unfavourable cost-benefit ratios, increase in pain/discomfort
Are there really a dearth of positive incentives? I can see a view of the world where succeeding at gendertropes is just table stakes expected of everyone by default, worth no plaudits for meeting the bar, but lots of demerits for failing. But also a view where all the benefits of such social conformity - in the form of avoiding the punishments, yes, but also "Halo Effect"-ing one's way through jobs, school, mating, etc. - are a big deal indeed, and lotsa incentive. I'm also persuaded by now that effort is consistently inefficiently allocated in Being a Beautiful Woman/Rugged, Handsome Man endeavors. Working smart versus working hard, and all that. (Which doesn't deny the existence of privilege under lookism either, obviously. Some lucky bastards are just Born That Way.)
Maybe I didn't quite grasp what you meant though, it was more abstract than I'm comfortable replying to and felt pretty sure I was biting off more comment than I could competently chew. Sometimes one just feels the need to respond to stuff in relevant-interest posts and goes looking for suitably-unembarrassing hooks to do so. Carry on.
There may be some confusion here between the rewards for being an ok average man or woman vs. the rewards for being extremely an extremely beautiful woman or masculine man.
Also, what counts as a reward can be personal. Women are expected/required to wear at least somewhat interesting clothes. Men are expected to not wear interesting clothes. People have definite preferences for how much they want to pay attention to their clothes.
I'll find the "contort your body in various horrifying ways" questions easy to answer: no. I can't contort my body even in non-horrifying ways. My motto is Treebeard's: "I am not very, hm, bendable."
I can barely pull on my socks these days!
Long covid can cause a lot more than just fatigue. Dysautonomia is pretty common, a lot of people get POTS after covid.
I remember another r/medicine post where some doctor wondered if Tiktok was giving all the kids POTS, kind of similar to the post you linked about "instagrammable illnesses":
https://www.reddit.com/r/medicine/comments/wmpywd/anyone_noticed_an_increase_in/
Most of the doctors replying on there blamed social media and "sickfluencers". And then one medical student replied with an obvious alternative explanation: maybe we're seeing an uptick in POTS because we all just got covid and POTS is one of the symptoms of long covid. (it's also sometimes a side effect of covid vaccines, which we gave to hundreds of millions of people)
We have this perception of doctors from shows like "House" where they work tirelessly to diagnose complex diseases. But some actual doctors prefer to get on reddit and accuse their patients of faking symptoms?
I don't know. Surely some patients do fake symptoms. Is it common enough that a doctor should use that as a first guess? Or is it rare enough that a doctor should work thoroughly to exclude everything before coming to that conclusion?
I think POTS was rising well before COVID. I think it was so rarely talked about before that I'm not sure it was even mentioned in my four-year medical school education, but the past five years or so I've seen a lot of patients start talking about it. This could either be because it's finally being named/recognized/diagnosed correctly, or because it's a more popular psychosomatic diagnosis, or both.
Definitely looks like the big uptick in interest is mid-pandemic:
https://trends.google.com/trends/explore?date=all&geo=US&q=%2Fm%2F04l6qx&hl=en
But you're right, there's also been some steady increase in interest for years.
Also looks somewhat hard to investigate since "pots" is confounded by cooking pots, which apparently sees an annual spike in interest every May:
https://trends.google.com/trends/explore?date=all&geo=US&q=pots,%2Fm%2F04l6qx&hl=en
It doesn't help that there's also a condition called Potts, which is tuberculosis of the spine
Interesting, I've never heard of that one.
I asked a less autistic person to explain the seasonality of "pots" searches and she immediately came up with one plausible explanation:
https://trends.google.com/trends/explore?date=today%205-y&geo=US&q=mothers%20day%20gift,pots&hl=en
I’m a cis female and as long as I can remember I’ve had hypermobile joints in my upper extremities and I faint if my head changes position too quickly. I just figured that was the way my body was. I’m about to go in for bone density testing because I’ve had 3 fractures in my arms and arthritis in my neck (I’m 41). It never occurred to me I could have EDS or anything similar until I took the ACX survey, and I hadn’t heard of POTS, but now I have some new questions to ask my orthopedist.
I wonder if your flexible neck is cutting off the vertebral blood flow, somehow?
POTS is more about high heart rate on standing. You can test yourself for it pretty easily in 15 minutes or so:
https://batemanhornecenter.org/nasa-10-minute-lean-test-2/
Or, at least you can test your heart rate, you might not be able to test blood pressure. There are some rarer forms of orthostatic intolerance where, say, your heart rate doesn't go up but you still get reduced blood flow to the brain.
"These results were a bit ambiguous, but I think overall they pointed in the direction of replicating the connection. 6/6 trends were in the expected direction"
Different effect sizes are different hypotheses. If one study gives a prevalence of 2x normal in the test group, and another study gives a prevalence of 132x normal in the test group, those studies are not sampling the same random distribution and should not be regarded as supporting each other just because they're "in the same direction".
e.g. if I flip a (unfair) coin a bunch of times and find that it lands heads 2x as often as tails, and you flip a coin a bunch of times and find that it lands heads 132x as often as tails, then either we're not flipping the same coin or there's some important difference in way we're flipping it that makes the results not comparable.
I'm a bit surprised that we didn't jump straight to increased genetic load as a common cause... thought maybe that's not helpful even if it were shown to be true.
I have a cancelable hypothesis (I'm not going beyond hypothesis on this) that being transgender is just a currently in mode manifestation of mental illness/depression/not being happy with yourself/etc.
It seems like throughout history people who've disliked their life have manifested this in different ways, whether it's becoming religiously devout, developing an eating disorder, deciding they have MPD, drugs, sucide, cutting (big when I was a teen), chronic lyme or whatever. I speculate that people who are severely unhappy look for a thing to do about it or way to explain it and often latch onto a trend. My speculation is that, if you are currently unhappy with your life and start looking around on TikTok or whatever, you will eventually find someone suggest that it might be because you are actually trans and some people go with it (20 years ago this might have been a pro-ana site). Since changing your life and taking up a cause are helpful in getting out of a funk, people who do this actually feel better and it can become self-reinforcing. For what it's worth, as outlets for depression/unhappiness go, deciding you are trans is seems like it is pretty harmless and, if it works, it works.
This would also help explain why there is so much suicidal ideation/attempts among trans people. It isn't that being trans makes you suicidal, but that being the sort of person who is suicidal makes you the sort of person who would settle on being trans as an alternative solution.
At this point I'm just putting this in the hypothesis category. I don't have enough information or enough qualifications to say it is definitely or even likely true, but is seems plausible to me. It may also not be the only reason people are trans. It may be that there are some people who are "actually" trans while others who come to it as a form of self-medication.
"For what it's worth, as outlets for depression/unhappiness go, deciding you are trans is seems like it is pretty harmless and, if it works, it works."
Which part of cutting your genitals off and (for teens) permanently interfering with your sexual development is harmless?
Beats the heck out of outlets like eating disorders, heavy drug use and suicide. Most trans people at least claim to be relatively happy with transitioning.
I appear to have no permanent issues from heavy drug use and I don't regret it at all.
I think I would regret it if I was now impotent or had undergone some irreversible operations (especially if, as seems to be true in many actual cases, the result was not all I had imagined).
Does it, though? Eating disorders don't usually last forever. Heavy drug use can be stopped with therapy. Suicide is obviously irreversible, but as you said, being trans doesn't replace suicide, and if anything might cause suicide.
Eating disorders can keep coming back under stress, though I think a lot of people notice in a few days.
Also, eating disorders can cause permanent physical damage.
I had an eating disorder in my teens and it stunted my height/growth, permanently screwed up some stuff about my hormones, and damaged my fertility. Took me many many years before I was finally able to be at peace with the fact that I'd screwed myself over that badly by my own choices, and that my life looks a lot different than it would have been (from things like the fact that I am a pianist, but my fingers will never be as long as they would have been, to the fact that it will be much harder and maybe even impossible for me to ever have kids).
"I speculate that people who are severely unhappy look for a thing to do about it or way to explain it and often latch onto a trend."
I suspect this is often true. I also suspect it's hard for a previously-overlooked real problem to gain recognition without going through a "trend" stage.
We won't achieve categories that carve reality perfectly at the joints, and when people make new categories to account for aspects of reality that ought to be acknowledged, there's no guarantee they'll draw the boundaries of the category well enough the first time. As people keep refining their guesses as to what the boundaries of those categories will be, some, especially those at the margins of those categories, will find themselves popping in and out of the category boundaries according to "fashion". And that's assuming the categories in question really do help us describe reality beter. Not all categories will, even assuming all categories are honestly intended to.
Transness correlates with:
- Sex-atypical neural structures (even before the individual undergoes hormone replacement therapy and regardless of sexual orientation)
- Homosexuality, intersex conditions, and autism, each of which is related to hormonal abnormalities
- Having genes that relate to processing sex hormones
- Having a transgender twin (and, to an exponentially lesser extent, having a transgender sibling who is not your twin)
While I do believe that more than biology is at play here (the identical twin of a transgender person is usually *not* trans, even if they are far more likely to be trans; rearing influences gender outcomes in intersex individuals; the neural differences in question only exist on the group level) your account does not explain why people who feel like they're "really of the other sex inside" tend to actually be unusually biologically similar to people of that sex, sometimes in ways they might not even be able to detect. It's not just a matter of sex hormones -> gender nonconforming preferences -> transness since many transgender people have sex-typical interests.
My own (highly speculative) take is that, much like people are predisposed toward developing a particular sexual orientation, so is the case for gender identity. Some people are "obligate monosexuals" - their predisposition toward either heterosexuality or homosexuality is so significant that they're effectively locked in. Others are liminal, with weak innate drives that can be swayed hither or fro, usually up until the resultant orientation self-reinforces into less mutable solidity. Then there are folks who are essentially bisexual but are socialized into suppressing certain aspects of their drive.
Something similar might be happening with gender, with social forces pushing more and more liminal cases over the edge.
Not to open any cans of worms, but I know many people who read this comment section are not big on "gender ideology". An olive branch from a transgender person: the above does kind of imply that we should be very cautious about what we teach and how we socialize children. Triggering someone's latent predisposition via classroom exposure should be avoided. At least until after puberty since that's when gender identity usually (mostly) solidifies. Likewise, while I still do think some children can benefit from medically transitioning following a very careful assessment, some effort should be made to dissuade suspected edge cases to whatever degree that can be done without traumatizing them. Survivors of conversion therapy typically suffer immensely but surely there's a way to nudge someone without the brutality associated with past attempts at this. And if someone can't be dissuaded, so be it.
My impression is that we should be telling adolescent girls that their current moodiness is not a symptom of a fundamental disorder like having been assigned the wrong sex at birth but instead a byproduct of their being the Most Important People in the World: the only ones who can carry on the human race. It's a huge task, but we think they are up to it.
As an woman, telling a seriously depressed woman that her suffering is worth it to be a future baby vessel and The World Is Counting On You to procreate is absolutely not the correct approach.
Let's say we take 'transgender identity is solely caused by being mentally ill/depressed/unhappy with oneself' as a given. That then raises the question of 'why do so many of these mentally ill/depressed/unhappy with themselves people have stretchy skin and collagen?'...which just kicks the can down the road.
Might be as simple as p-hacking. If you check enough characteristics for any given group, it's likely you will eventually find one that is more common than average among them.
Also, I'm not saying there is no underlying genetics/cause, just that the gender dysphoria is a culturally mediated manifestation of that genetics/cause. Think of it how people used to see angels and now they see space aliens.
If it is p-hacking, why is hypermobility WAY more common in trans people? The studies Scott posted showed that trans people were something like a full order of magnitude more likely to be hypermobile. That seems like way more than just random chance or a lucky shot. It's possible that hypermobile people raised in Western culture wind up trans and if they were raised in a different culture they'd have something different happen to them.
Yeah, I had a brain fart here.
Out of curiosity, have any of the studies on this controlled for autism? I know there is a strong link between autism and hypermobility and it seems like people with autism may be more likely to be trans.
I've been waiting a long time for the rationalist community to get their deft hands on this topic. I'm close friends with a number of people that fall under the same symptomatic umbrella of neuropsychiatric-inflammatory-metabolic issues. They have seen these patterns repeat enough to convince them of a common factor. Intuition and observation prime me to agree - but what REALLY gets me is this theory - https://www.rccxandillness.com/. Basically, the argument is that CYP21A2 mutations have a cascade of effects, most of which appear downstream of Krebs cycle dysfunction. I may have mangled that, but there's a whole lot more on there, and to my nonprofessional eyes it seems excitingly feasible. If you ever wanted a thorough, expert level theory that answers the direct question of your post with as much research as possible, this is it. Check it out and let me know what you think.
As I understand it, the argument is that people with a brain "wired for danger", due to stress in utero, are in later life more prone to hormonal inbalances and disorders, and the mental and physical consequences of these.
Sounds plausible, on the face of it. But shouldn't that mean these disorders are more common in areas with long-term conflicts, such as Palestine or Kosovo, or Iraq, and less common in prosperous and long-peaceful Western countries such as the US?
My impression is that the opposite is true. People in Iraq, for example, seem fairly relaxed and inured to stress, whereas many more people in western countries are neurotic bags of nerves!
edit: I'm not trying to dismiss the theory at all. It could be there are throngs of nervous Iraqis in my example, traumatized in the womb, but they avoid being out and about or especially being interviewed on TV! But I suspect there may be some extra ingredient that means not everyone whose mother had a traumatic pregnancy (or long drawn out birth?) ends up wired for danger. Perhaps it makes some people more placid and laid back than they otherwise would have been.
FWIW Londoner's during the blitz who experienced (and survived) direct bombing were found to be less anxious for the remainder of the war than those who had yet to experience any first hand destruction. It's as if the anticipation is far more nerve wracking than the actual experience.
Unlike in war torn countries, most people in the west do not experience direct conflict, but are plugged into the mainstream media 24/7 which is basically non stop 'fear porn'... a constant air raid siren...
Other factors could include ultrasound (more common in western countries I would imagine) and electromagnetic radiation from the ever increasing wireless soup we now live in. In many countries wifi is now being taken out of schools because it's making the children sick. France has literally banned wifi from primary schools. And crippling anxiety is one of the common symptoms (along with headaches, nausea, skin rashes, brain fog, depression, insomnia, fatigue and a feeling of being electrified). The effects of wifi/ cell phones on foetuses is too horrifying to contemplate. Laptops and tablets resting on the belly are the worst possible thing a pregnant woman could do. In China pregnant mothers must wear aprons with shielding to protect their wombs from EMF.
Studies of pregnant women's exposure to SMART meters (which are essentially mini cell towers stuck on the side of your house) have found a positive correlation to autism.
The explosion in wireless (microwave) pollution perfectly mirrors the explosion in 'trans', although the huge numbers of de-transitioners (many now bringing lawsuits against their doctors) are confirming that they are being misdiagnosed. Microwave pollution is causing 80% - 100% declines in insects, and now we are seeing birds dropping dead near cell towers too, as well as exhibiting behaviours such as inability to pair bond, build nests, lay eggs or do anything except fight or stare vacantly into space. In other words, microwaves have been observed destroying natural GENDERED behaviour in birds.
As mentioned, the banning of wireless on health grounds has already started. It's already a dying technology - completely unsustainable. The industry warns shareholders to expect an avalanche of health related lawsuits. Insurers won't touch wireless with a barge pole. And yet the industry and consumers alike are still addicted to this most toxic technology. Gen Z are the first generation in history to have been born in a microwave environment.
The relationship between Ehlers-Danlos syndrome and long covid could be the same relationship as that between Ehlers-Danlos syndrome and myalgic encephalomyelitis which could be due to strain on the spinal cord and brain stem due to neck instability. For more on this idea, see Jen Brea's Medium posts and Jeff Wood's website: https://jenbrea.medium.com/ https://www.mechanicalbasis.org/mystory
I’m voting for “weird gene/protein thing”.
Compare this with primary ciliary dyskinesia, which causes your bronchial cilia to not work, causing various respiratory problems. And then, (exactly) 50% of the time, it also causes all of your internal organs to be mirrored so that your heart is on the right and your liver on the left, etc. Because evolution is a mad scientist and it does things that make no sense.
What is the evidence that “CAH causes gender divergence”?
Specific studies showing a connection between CAH and gender divergence:
https://bmcpediatr.biomedcentral.com/articles/10.1186/s12887-021-02742-9
https://core.ac.uk/download/pdf/42337741.pdf
https://urology.wisc.edu/wp-content/uploads/2019/05/Gender-dysphoria-and-XX-CAH-Eyer-de-Jesus-2019.pdf
https://link.springer.com/article/10.1007/s10508-005-4338-5
General review of what's known about biological influences on gender identity development, including many more citations about CAH:
https://www.mdpi.com/1422-0067/21/6/2123
Thanks. Small sample sizes and potential confounding. I would not consider conclusive evidence without population data.
I read this and immediately thought that if these conditions, and others are linked to elevated levels of estrogen, it is exactly what I'd expect to see based on what little I know about Bisphenol-A and pseudo estrogens. I can't claim special knowledge, and would be happy for any corrections, but my understanding is that chemicals like Bispehnol-A enter the body in a variety of ways, trigger endocrine all kinds of inappropriate endocrine activity, operate at very low dosages (unlike, say a carcinogen that might require continued exposure) and have been in every US citizen for about the last 30 yeats.
https://www.cdc.gov/biomonitoring/BisphenolA_FactSheet.html
Obviously I wouldn't want to simply explain away all of < current year> ills with a single chemical, yet, the thing about BPAs that always stuck with me was how impactful they were at micro doses and how little information on the impact on humans existed. Frankly, it still feels like a scoop, but maybe I'm just waaaay out in left-field.
(FWIW, I did my research a few years before I heard Alex Jones talking about 'gay frogs,' but this is that same basic issue)
I developed joint issues during pregnancy, and this was evidently very common. I agree that elevated estrogen levels are likely.
100 years from now the healthier happier post-bisphenol A Americans of 2123 will carve onto Mt. Rushmore the face of Alex Jones warning us about the gay frogs.
Admittedly, I didn't see that coming.
But, now that you mention it, it sounds pretty plausible.
I dearly hope so.
Just because you mentioned CAH, I got the results today from a genetic test I took because me and my wife are going to start trying to have a baby soon, and the only genetic disorder I tested positive was as a carrier for CAH. Does simply being a carrier affect me(a man) at all?
I'm not worried yet about passing it to my kids, my wife's test hasn't come back, but based on the distribution in Ashkenazi Jees, there's only a 1/250 right now that our kids get it.
Scott, we love your work because you're committed to following the data, wherever it leads.
You wrote "All Instagrammable conditions cluster together among Instagram users; if transgender is also Instagrammable, that could explain the finding."
Bingo. You won't get to the bottom of the EDS <-> Transgender <-> Autism connection without considering social contagion as a cause for transgender self-identification, particularly among autistic girls.
This is, of course, against the trans orthodoxy. Will you follow the data wherever it leads?
Abigail Shrier's book 'Irreversible Damage' might provide a good summary of the issue and starting point for your investigation.
"You won't get to the bottom of the EDS <-> Transgender <-> Autism connection without considering social contagion as a cause for transgender self-identification, particularly among autistic girls."
Yes, strong reasons to think it's exactly this.
FWIW i have a fairly popular essay about this topic: https://arcove.substack.com/p/null-call
Basically I notice strong similarities between random laundry list of symptoms of "shaman's sickness" found in an old pop anthropology book and Shannon Megelathery's RCCX hypothesis and "CYP21A2 Mutation Associated NeuroPsychiatric Spectrum", which links EDS to a variety of other conditions (more on that here: https://www.rccxandillness.com/cyp21a2-mutations-may-be-the-diathesis-in-the-stress-diathesis-model-for-chronic-medical-and-mental-illness-and-may-cause-a-psychiatric-spectrum-caps.html). I then go on to muse about the evolutionary psychology "shamanic hypothesis" and what it would mean to adopt that as a part of your identity in the modern world.
A number of people (at least 2, which is a number) have read it and told me that it inspired them to come out as trans
Also, while I am here, I met you (scott) in austin last year and you said that you recognized my name but neither of us could figure out where, and I'm pretty sure its because of a comment of mine on your essay about paul fussel's "class" that you featured (but I think you got my name wrong and called me "Drew Schlomo" or something lmao)
Lies, damned lies, statistics. And data. None of the above explanations. Or all of them. Or some. But only in the presence or absence of Factor X. It just kills us to see a pattern and have no explanation. We lack the patience for seeing if patterns persist over time and, if they do, to do the heavy lifting to get enough rigorously developed data into enough carefully applied analyses. The fundamental problem we have in coping with randomness is that randomness is chock full of patterns and we are all descended from a very long line of ancestors who lived long enough to be our ancestors on their ability to detect patterns.
For the avoidance of doubt, I am not poohpoohing the existence of the phenomena or the associations with trans people or other classifications. What I am doing is pointing out there always are limits on what we can know and understand. Part of living the evidence based life is the ability to say “I just don’t know enough to say one way or the other.” And then go on to the even harder part of treating doing nothing as a no more intrinsically valid choice than doing something under uncertainty.
The correlation between Long COVID diagnosis and LGBT seems obvious enough to me. There's a large gap in perception of the existence of Long Covid between left and right political camps. And far more self-identified queer people on the left than the right.
Throughout the pandemic, conservative news sources downplayed Long COVID while liberal news sources hyped it up. Anecdotally, whenever I've discussed the topic with liberal friends they've always taken it very seriously... in the more extreme cases, some kept wearing masks long after the vaccines came out due to fear of getting Long COVID. Whereas whenever I've brought it up to conservatives, they've all been skeptical about it. Most of them think it's been exaggerated and over reported; one I interacted went so far as claiming that there was no such thing, and it was all just misdiagnosis.
I guess the ultimate diagnosis is up to the doctors, but seems much more likely that someone on the left would seek diagnosis of Long Covid after experiencing symptoms, while someone on the right would interpret the symptoms differently... either not reporting them at all or leading the doctor in some other direction.
This post caught my attention because I happened to meet a trans woman with EDS and hypermobility about 2 months ago, which was the first time (and only time) I've ever heard of EDS.
Her limbs keep popping out of their sockets and need to be reset, and all of her fingers can bend backwards. I'm trans myself, and have thumbs which can bend backwards, as well as a jaw that can open beyond the normal range.
>I guess the ultimate diagnosis is up to the doctors, but seems much more likely that someone on the left would seek diagnosis of Long Covid after experiencing symptoms, while someone on the right would interpret the symptoms differently.
Alternatively, leftists manifest those symptoms at a higher rate due to social contagion.
Given how my own autism has driven me to become obsessed with various lifestyle changes, often lasting years, it wouldn't be surprising to me if the autism correlation with transgender population was sometimes causal. I could see myself as a younger man becoming fixated on the fact that I *could* be a woman and pursuing hormone therapy purely out of curiosity.
I have a diagnosed "marfans-like genetic condition" and issues with pervasive nausea. I was recently watching a talk on functional nausea, and apparently, they're finding a correlation with EDS/connective tissue disorders as well. Functional Nausea is an interesting condition that seems to intersect between gut and nervous system, since vagal nerve stimulation and hypnotherapy are both reportedly effective, while drugs are generally not.
Source: https://www.youtube.com/watch?v=wEw3-apN0aA&ab_channel=UMNPeds
I had been dying to know what you were going to do with the hypermobility question!
I’m cis-het female with diagnosed but not specified hypermobility. I was always double-jointed and filed this under “stupid human tricks”. And then about a decade ago I did something weird to my neck that was bad enough to keep me going to doctors for a few months. All of them prescribed stretching. Eventually I found one who watched me touch my ear to my shoulder and told me to stop stretching. He actually compared me to “a piece of overcooked linguine.” It worked- I avoid stretching and get hurt way less than I used to. My sexuality and gender identity were never anywhere near as flexible as my tendons.
I’m guessing hypermobility is way under-diagnosed. I wasn’t the only double-jointed kid in the cafeteria, but maybe I was the only one who torqued her own destabilized neck hard enough to seek help. I have to cut the doctors some slack, since most times I came in unable to move my neck *at all*. Suggesting stretching is also probably a horses-not-zebras thing, since it helps the vast majority of the cases that show up in your office.
But I just remembered the only kid in high school more double-jointed than me…is trans! I’m surprised I remember this, but 210 degree elbows do make an impression.
"But Long COVID is maximally easy to psych yourself into thinking you have - it’s just fatigue " - what, seriously?
"General symptoms (Not a Comprehensive List)
Tiredness or fatigue that interferes with daily life
Symptoms that get worse after physical or mental effort (also known as “post-exertional malaise”)
Fever
Respiratory and heart symptoms
Difficulty breathing or shortness of breath
Cough
Chest pain
Fast-beating or pounding heart (also known as heart palpitations)
Neurological symptoms
Difficulty thinking or concentrating (sometimes referred to as “brain fog”)
Headache
Sleep problems
Dizziness when you stand up (lightheadedness)
Pins-and-needles feelings
Change in smell or taste
Depression or anxiety
Digestive symptoms
Diarrhea
Stomach pain
Other symptoms
Joint or muscle pain
Rash
Changes in menstrual cycles"
https://www.cdc.gov/coronavirus/2019-ncov/long-term-effects/index.html
As an alternate explanation, we should consider the fact that maybe brain development and connective tissue are more related than one would expect. For instance, “FXS is an X-linked disorder due to a full mutation of the CGG triplet repeat of the FMR1 gene which codes for a protein that is crucial in synaptogenesis and maintaining functions of extracellular matrix-related proteins, key for the development of normal neuronal and connective tissue including collagen. In addition to neuropsychiatric and behavioral problems, individuals with FXS show physical features suggestive of a connective tissue disorder including loose skin and joint laxity”
So we already know that abnormalities in extracelluar matrix formation can lead to both abnormal joint function and atypical neurological development. And it’s easy to imagine how neurological differences could affect a person’s gender identity. This strikes me as a much more parsimonious explanation for the link between gender identity and hypermobility.
I concur. It's very common for factors that relate to psychological abnormalities to manifest in external bodily traits. Dark triadism correlates with certain facial features (though which with what is still contested), homosexuality with others, and so on.
I may be way off track here, and I realize that I sound like a boomer, but if propioception is so important for establishing neurotypical patterns - could it be that changes in how children are raised (less time on playgrounds, more time glued to screens from a very young age) do have an impact on the (apparently increasing) rate of ASD/ gender-dysphoric/ body-dysmorphic/ other neurodivergent issues observed in young people?
Sounds plausible.
Thinking back, I'm amazed at the thousands of hours I spent as a child (born late 1958) doing sports activities, such as bouncing a ball off a wall and catching it over and over.
I would have made a fine nerd, but I didn't have a computer.
I know you asked in seriousness, but - if only there were a way to extrapolate full-stack proprioception from just one's thumbs. Because the younger generations are at least incredibly skilled at phone-related gestures. I got lots of playground, sports, etc. time to develop the real deal as a Millennial, but am still terribly embarrassingly hunt-and-peck at texting. Touchscreens in general are honestly enraging, give me a real mouse and keyboard any day...
It's a shame Google Glass-type AR hasn't taken off still, or that'd be another angle to correlate on. VR doesn't have the market penetration yet - I'd expect such users to be too confounded for appropriate comparisons to general population. But if it were someday possible to get an equivalent amount done without even trivial hand gestures...? (What about voice assistants?)
I struggle to see why you need to invoke proprioception and brain stuff here. Some people's physiology kust makes their joints bendier than others. If you killed me and a hypermobile person (please don't) so neither of us was propriocepting anything any more you would still be able to bend their joints further than you could mine. Perhaps you'd find that their ligaments were longer or had different stress-strain curves if you took the time to autopsy us.
Isn’t it a feedback cycle? I’m hyper mobile, and while I didn’t think much of it for most of my life, it probably contributed to my general lack of confidence in and connection to my body.
I like my body and for the most part it works just fine, but I’ve always been mystified by how some people can, say, run mile after mile without wondering if the next footfall will land. Personally, I’m never sure. When I was in my formative years this self-image as clumsy and accident-prone was definitely part of my identity, and in hindsight interfered with me feeling truly feminine on some level. If gender really is a complex constellation of factors, feeling even subtly ungainly, weak or broken could be one of them.
What do you call the opposite of a disorder: when you are way above average in flexibility in a good way? In golf, mid-century great Sam Snead could touch his wrist with his thumb and kick the ceiling with his foot. The term they used then was "double-jointed." Similarly, John Daly is a strong fat guy who looks liked he'd be muscle-bound, but he takes an extraordinarily long, graceful backswing and was the longest driver of his generation of tour pros.
Both lasted a long time: I attended the L.A. Open in 1974 when Sam Snead made a final round charge and wound up finishing second at age 61. (Later that year he finished third behind Trevino and Nicklaus in the PGA major championship.) Everybody figured Daly would have drunk himself to death by now, but he's still around, playing on the Senior Tour.
> What do you call the opposite of a disorder: when you are way above average in flexibility in a good way?
Mr. Snead ALSO had hypermobility...he was just lucky enough to not be hindered by it. He was also probably fairly strong, physically, and that helped him a lot. There are people with hypermobility that are more or less unaffected by it, and while generally speaking it is a mild hindrance, it does confer certain advantages.
Reduced interoception could perhaps also be a factor
I responded "no" to the hypermobility question (not even "now you mention it...") because my joints in general aren't over-flexible - I think they're actually below averagely flexible - and I've never dislocated a joint. But I do have some "double-jointedness" in my hands. Like the respondent you quoted, I can push my thumb to touch my wrist without discomfort, and I can bend my finger joints backwards (even without the use of the other hand) to freaky-looking angles.
I think it's probably still more accurate for me to have responded "no", because finger hypermobility isn't going to cause any weird proprioceptive effects growing up. OTOH, if you're interested in genetic or epigenetic effects, then hypermobility in just one part of the body could still be relevant.
I don't know how common it is for people to have very localised hypermobility-like symptoms. But if it's fairly common and some of those people answered yes and some answered no, that might dilute the usefulness of your results. So it's good that you're going to do a follow-up that asks about separate joints separately.
(I'm a cis woman, and probably autistic in the Asperger's sense.)
One more data point indicating a correlation between all three issues (though I am a "mild case" for all three).
1. Gender: I am a biological female who identified as transgender a few years ago and did everything, including social transition, except hormones and surgery. The "trans identity" never really resonated though, and eventually I ran a cost-benefit calculation and decided that transition was a net negative. Accordingly, I am no longer taking steps to change others' perception of my gender, and would have ticked "cis female" in the ACX survey. Some degree of what is referred to as "gender issues" in another of your posts does persist (e.g. I have a doctor's appointment next week to sort out whether my current insurance would cover chest reduction surgery). (-> Maybe the survey should be more granular?)
2. Autism: I'm not sure I'd fit the diagnosis, but I am at least pretty far to the autistic end of the spectrum. I can run my own life without assistance and have learned to behave neurotypically in most contexts, and at no point I would have rated my symptoms as severe. I do a lot of things that seem to be typical of autistic people (e.g. I used several blankets to make them heavier for years, long before I ever heard that weighted blankets are a thing, run around in my thermal underwear in my home basically all the time, and actively trained my facial muscles for to make my face seem more mobile and facilitate social interaction, in an experiment which I consider a success.)
3. I wouldn't have thought to connect it before this morning, but after reading your post it seems at least noteworthy that I'm also diagnosed with hypermobility syndrome. I went to see a doctor with back pain and he observed how far I could reach in a few stretches, then gave me his diagnosis and told me I could fix the issue with strength training. I did, and it worked. I'd known I was exceptionally bendy through Aikido practice, but hadn't thought twice of it. This bendyness predates the gender issues.
I've never been more than a very occasional user of social media, and I do not think my overlap with the special snowflake cluster is especially high. (It's nonzero though, FWIW.)
Age: 20.
I think my mutational load is probably high, and think this might be related to the fact that my mother had me at 40 after several miscarriages. The only alternative theory I am able to generate is that my overlap with the special snowflake cluster is higher than I think, but I do not find it very convincing.
I'm interested in what is up with this, and I'm very happy to answer questions to help gathering data points!
Perhaps you are aware of this, but just in case you're not: When on the receiving end of a Aikido technique or immobilization, make sure not to relax completely! In my understanding, by wringing hands, arms and shoulders we train our muscles to work in reverse, something akin to breaks if you get what I mean. You resist without clenching up. Training this way you'll end up with strong, yet supple joints. Not doing it will risk overextending the joint an injuring it.
So that's probably why two separate physiotherapists have told me to avoid yoga! I wasn't doing that, but now I know why, thank you :)
I likewise *could* count as a "mild" case of all three, though that I could doesn't strike me as important.
1. Gender: When you say, "eventually I ran a cost-benefit calculation and decided that transition was a net negative," I can relate, in that I seem "cishet by default" because the costs of being otherwise seemed to outweigh the benefits to me. Lifelong need of maintenance asthma medicine leaves me acutely aware of the financial and logistical burdens of prescription dependency, and I wasn't eager to add to that burden by reversing my sex-hormone profile. Learning that it's hard to take monastic vows (or otherwise be accepted in more-conservative Christian circles) if you're trans also took the luster off transitioning for me. Having been so easily dissuaded from transitioning suggests I must not have had a strong need to?... Anyhow, I only have so many fucks to give about any kind of sexuality (sex isn't the only important kind of eros, dammit!), and I don't regret going the traditionalist route of becoming a wife and mom because – well, they're my husband and kids! I love them! – even if I find the experience of "motherhood" and "womanhood" rather weird :-)
2. Autism: My eldest had a speech delay, is just starting elementary school, adopts obviously hypermobile postures, and the school psychologist just requested my approval for autism testing, which I gave. I'd never done any "are you autistic?" quizzes before or pursued an autism diagnosis. A neurologist I met only once for an incidental test told me to get checked for autism, but the medicos who knew me better told me they could already tell autism wouldn't be my problem. That said, with news of my child, I took some assessments online with a decent reputation for reliability, and my scores were near but somewhat below the median for "women classified as autistic". But, I kind of don't care?... Would calling myself on the autism spectrum (and even really being on it, medically) tell me any more than I'm a bit weird, which I already knew? Would the label help me get information to improve myself and my lot in life – and if not, what's the point?
3. I have an EDS diagnosis from a geneticist, though based on physiology alone rather than an identified genetic marker. I'm reasonably confident I did my due diligence as a patient by subjecting myself to a diagnostic process for EDS designed to reduce false positives. Strength training helped me for a pretty long time, but I managed to get some pretty ridiculous orthopedic injuries while burly anyhow. After the added joint laxity of pregnancy, I find it's harder to get strength training to "take" like it used to. I'm at greater risk of injuring myself badly enough to enforce the kind of rest that leads to *even worse* deconditioning now. Some of that's normal aging, of course – but it's like aging 20 years ahead of schedule.
I stay away from any social media bigger than a blogger's comment section. I'd also describe myself as having low-though-nonzero overlap with stereotypical "special snowflake" characteristics.
Regarding 2: I didn't regard autism as something I might have (because of reasons) until some time early this year, when I found an online article describing some of the lesser known stuff (specifically, the visual imagery thing) and a lot of pieces suddenly fell into place. The main benefit in my life has been that googling stuff like "social skills aspergers" yields result that are actually useful for me, like this one: https://docs.google.com/document/d/1y3jXO9k4trCUxN26b-0flvbUZCrQu7Azx0w1kPdYCns/edit#
Knowing what to look for has been great for making focused efforts to solve problems.
On the other hand, increased awareness of certain issues (mostly sensory stuff) has made some of them worse. I'm not sure what to do about that. Furthermore, I had something like an anxiety attack a few days back, which I think came from exposure to stories about people who I now had mentally categorised as "similar to me" who have issues like that. When I was in similar situations before, I'd get e.g a clenching feeling in my chest which I could successfully ignore. Now there was also brief shaking and crying. This is a development I absolutely do not want and I am looking for ways to reverse it.
Regarding a diagnosis, I do not want any. In my country of origin it's classified as a disability, and for idiosyncratic reasons that would be a net negative in my life right now. I wish it weren't because having an official-looking paper would make it easier to talk to my family about it, but it's not a priority right now.
Regarding 1: How did you meet your husband? What would you recommend to someone looking for a partner? Would you say it's preferable if both of you have autistic traits, or is it better if one is neurotypical?
I met my husband by a series of coincidences, first landing myself at a math department Christmas party. A graduate student I'd known my freshman year of college was now a professor there, and had brought a friend. Some guy. This guy and I got into an extremely dry argument over some extremely inappropriate topic, which I promptly forgot about.
Soon after, the professor persuaded me to try out for a large arts organization. I made tryouts and joined, but I wasn't enjoying it. I'm a fairly talented musician, but prone to stage fright and easily confused by the sheer bureaucracy of large arts organizations. Still, I knew I had few opportunities to meet many people sharing my interests, so I kept attending, once muttering to myself on the commute to rehearsal, "I'd better get a husband out of this for it to be worth all this hassle."
Well, I did. The same guy I'd argued with at the math department Christmas party.
I didn't show up at rehearsals to flirt – that is, while I tried to dress nice for rehearsals, my goals were limited to, "Show up. Don't attract negative attention. Try to pretend you're normal." Positively trying to flirt or dressing not just nice but "skimpy" seemed more likely to attract negative attention if I tried it. So I didn't try. I just kept showing up.
I'd recommend simply showing up for group activities you're interested in as a way of meeting a spouse. As long as all you've got to put up with is hassle, not actual abuse or anything like that, the hassle could be well worth it – even if you don't snag a spouse: pursuing a shared interest often is. I have no tips for online dating since I luckily avoided it.
My husband is... also a bit weird. He was profoundly dyslexic as a child, but got over it. Maybe he'd be classified as autistic if he were a kid growing up today? His obliviousness to ordinary household concerns can be a bit frustrating, but I suspect he and I frustrate each other less than most spouses do. He's older in years than I am, but my age or younger if measured by decrepitude :-)
That's a very hope-inspiring story, thank you! It reads like something that could happen to me, and it's congruent with the plans I already had. So, thank you.
You're welcome and good luck!
I admit that what I described as "hassle" often felt nearly intolerable at times. I spent a few rehearsals far more focused on keeping myself together than on the music – but I could make up for that "missed" rehearsal time by practicing at home.
Despite some real unreasonableness and unfairness in the way the organization was run, and no matter how bad I sometimes *felt*, "hassle" remains a better description for my frustrations than, say, "abuse" or "injustice" would. It helped that my soon-to-be husband shared my frustrations, though they didn't ruffle him as much as they did me. He tended to regard the hassles as more like injustice, if only petty injustice, but because they didn't rattle him as much, he also had more luxury of seeing them that way, if that makes sense. The easily-rattled, especially newbies, might make the least-convincing advocates for reform, if reform is needed. Anyhow, managing myself was a big-enough job without my volunteering to manage others, even if I could have made reasonable points in doing so.
That makes sense! Unfortunately, the no-longer-newbies often seem to be no longer willing to advocate for reform. I don't think I'll be able to avoid dealing with that kind of issue in the future...
This is somewhat of a repost from old SSC stuff, which I remember reading back then and feeling kinda...FOMO I guess? at not having this particular statistical mobility correlation...autism, check, +1 status bonus to Illusion-related checks, check, weird sensory issues, check. But I only have good twitchy Reflex saves, not full-out high bendy Dex...I'm no Beckham. Constant quip when someone compliments "nice reflexes!": "if I really had good reflexes, I wouldn't have dropped [thing] in the first place!"
Also, to poke an anecdotally small hole in Theory 4.5, I have above-average <s>passive Wisdom</s> <s>Perception</s> er, proprioception. Even if there's some confusion in my brain about what the exact body-map shape of the meat-territory is, it's very not confused about __where__ those parts are, both in absolute spatial terms and in relation to other objects. (Fun practical practice: try dodging through doorways as they close without touching them. Except revolving ones, those are dangerous.) There's a discrete "collision detection module" that takes extra effort to dial down or turn off - unlike, say, the "social graces module", which I often disable to conserve cognitive load under duress.
(By contrast, your old take on Autism As Sparsity Prior felt pretty correct to me, for whatever degree/causal connection the two things are entwined. You fit the mental model to the data you have, not the data that actually exists...)
Anyway, hello to the other (floor) 275 or whatever of us out there. I remain both impressed and also saddened that I tend to learn more tractable and interesting things about transness from Scott than from actual activists or capital-R Researchers. Here's to wishing once again for better data about our strange corner of human possibilityspace...
I was told I'm hypermobile, but I didn't think it would impact my life much. Turns out it makes you resistant to local anesthetics and I found out the hard way in 2019 by requesting an abortion with only localized anesthesia (since I was curious about what it would be like and didn't want to miss anything). I was deeply interested in trying to figure out why afterwards and my current working hypothesis is this: https://www.hypermobility.org/local-anaesthetic
I also recently discovered I'm a transmasc enby (instead of agender like I previously held as an intellectual position) who does not feel gender dysphoria (possibly due to dissociating it away since age 13), but feel an insane amount of gender euphoria when being seen and treated as more male (despite my dislike and rejection of gender roles and expectations about "male" behavior). This article is making all sorts of connections for me about why I'm a medical anomaly
A lot of other things, such as left-handedness at birth, made it so that it's a mistake for me to assume that the "average" outcome from studies (that usually exclude left-handers) would be the same outcome for me.
I find the information about local anaesthetics fascinating - I have pretty hypermobile joints and I once needed 3 injections to numb my mouth sufficiently for a root canal (the dentist was quite happy to apply them, just a bit confused as to why I could still feel them poking around after the first, never mind the second). It's not been a problem since, but something worth bearing in mind - thanks for the link ^^
There's an absolute flood of self-diagnosed EDS on social media recently, especially among the 'spoonie' community. Many of them feel it is a chronic pain disorder, and complain of back pain, use wheelchairs and try to get surgery for it. The few real cases I have seen (and it is a rare disorder) are not characterised by pain at all. There's plainly a social contagion going on.
EDS isn't damage, but rather vulnerability to damage. Some with EDS don't prematurely accumulate damage, and the pain that comes with it, but others do. Chronic pain is a common symptom of EDS, and pain is understandably a pretty powerful motivator for seeking diagnosis.
I find it plausible that some "sickfluencers" attributing the pain they claim to "EDS" are inaccurately self-diagnosing (or, rarer, though possible, have convinced a sympathetic doctor that EDS might be the problem despite other signs not being there). But the heuristic "People complaining of pain must not have EDS, because I've seen EDS without pain" is a bad one.
"contort your body in various horrifying ways "
Here is me reaching with my left arm, around the back of my head, under my chin and touching my left ear.
https://i.imgur.com/sQ4EgVT.jpg
I can almost do that, but not remotely the bend-fingers-backwards stuff.
Not autistic or trans. But fairly flexible. The one thing that stands out is my fingers can bend backward 45 degrees.
Pregnant women get much more bendy. Ligaments loosen for different posture as she gets bigger and finally loosens up the pelvis for childbirth.
To synthesize a little: if gender divergence is a function of emotional and hormonal responses occurring independently of bodily proprioception, what would we expect from the a generation for whom intense, interactive and interpersonal, experiences mediated entirely by screens were available during puberty?
Is it a misguide hypothesis to suggest that proprioceptive wiring combined with exposure and embrace of screens during puberty can un-anchor gender identity from sex? Is it too obvious?
Obviously books and television can do the same thing, but not quite in the same ways. I would still expect higher rates of transgender and bisexual identity among book lovers.
It occurs to me the importance of “wiring differently than society” is more than just PC lip service. Eg, people with female bodies who get an outsized sense of emotional reward and excitement from traditionally “male” physical activities would be over represented among non-hetero sexualities for sure, and non-cis gender identities perhaps? But I suspect people would be less likely to say that being especially physically agile or fluid moving or even competitive is a “mis-wiring” with the valence some of us still have to work to avoid when applied to autism or gender divergence.
Scott, read Null Call
https://arcove.substack.com/p/null-call
The people who suffer from social contagion of gender dysphoria are going to suffer from comorbid social contagions like EDS. I also think there trans-genders whose etiology is much less attributable to social contagion, and with this population It would be really interesting to study theory 4 RE proprioception, neuro divergence and autism comorbidity.
The problem with studying this is it’s going to be hard to disentangle the bona-fide transgenders and bona-fide EDS’ers from the social contagion ones, and so consequently they’re going to completely dilute your sample away from non-functional neurological disorder effects.
As a (cis) person with EDS, this topic is interesting to me! I want to point out some interesting things about the Najafian paper.
1) It found an EDS rate of 2.6% among GAS patients, which as you point out is ~100x higher than among the general population. If the rate of CAH were also 100x higher, that would be 100/15,000 = 0.67% - not equal to 2.6%, but a lot closer. Let's also consider that Tenascin-X (TNXB) mutations are only thought to cause some subtypes of EDS: hypermobile EDS (the most common type which also has several other causes - this is the one I have) and "classical-like" EDS which isn't very well-defined. But TNXB mutations only cause a small percentage of hypermobile EDS cases! So from the numbers it looks pretty plausible that linked mutations in the hydroxylase gene complex (implicated in CAH) and the TNXB gene could be responsible for a substantial proportion of transgender people with EDS - though not necessarily for most transgender people or most people with EDS.
2) The authors found the rate of wound healing problems was 28% in EDS groups versus 47% in control groups. This is *super weird*, because most forms of -Danlos syndrome are associated with *worse* wound healing, to a greater or lesser degree. Folks like me with hypermobile EDS often don't have any notable issues with wound healing (this is true for me), but I've never seen any suggestion that we have *fewer* wound healing issues than the general population.
I support asking about Beighton scores on the next ACX survey. Anecdotally it seems like a good, if sensitive, measure - my EDS is quite mild and doesn't affect my life in meaningful ways (though if I'm unlucky that may start change as I enter my 30s), and my score is still 8 (can't touch my palms to the ground).
Autistic and trans people tend to carry a high load of trauma and chronic stress due to being marginalized. So they tend to struggle with loneliness and alienation, and that leads them to gravitate to online socializing more than other populations. As a result they’re exposed to social media trends more than others. This would explain increased awareness of diagnoses like EDS that are highly publicized in social media.
And since there is a well known correlation between anxiety/stress and chronic pain, many people in these communities suffer from chronic pain. So they’d likely be especially interested in anything they encounter on the internet that might be an explanation for their pain.
While I’m sure some non-zero percentage of self-diagnosed “EDS” is the result of hypochondria or malingering, it’s also likely that many people genuinely suffer from this condition and only became aware it was a medical diagnosis through the internet. It’s much like autism in this way. There are many people out there - especially women - whose autism diagnosis was missed in childhood, and as the result of greater awareness through the internet, they’ve gotten diagnosed and have gained life-changing resources to manage their condition. Same with trans and gender dysphoric folks.
Sure, you get some trend followers and grifters who latch on, but the overall societal impact is largely positive. (Sorry to all the grumps out there, but people being annoying on the internet isn’t a real social problem.)
For what it’s worth I was diagnosed (pre-internet, by real doctors) as high-functioning autistic; I’m also non-binary, biologically male. Have always had very high joint mobility but can’t do a lot of the more extreme “EDS” tricks you see online, partially due to a lot of work I did to strengthen my joints and increase proprioception through exercise and physical therapy. I attend yoga class regularly and I tend to be more flexible than ~90% of the men and ~50% of the women, depends on who’s in the room of course.
I’d be even more flexible but I spend too much time sitting and that restricts mobility in my hamstrings and low back. Time to stop writing and get up, lol.
>gender affirmation surgery (ie sex change)
Is that necessarily true? E.g., our kid is non-binary and had top surgery that wouldn't be considered "sex change."
Just a nitpick.
https://www.losingmyreligions.net/
Not to mention that many cisgender men with gynecomastia get breast reductions, often when they’re below age 18 and at the instigation of their parents, and nobody bats an eye about this.
There’s probably even some nonzero number of transwomen who had this done and later wished they had that extra breast tissue. But there’s no media campaign about them for some reason.
I would think bigger breasts would be bad for athletic performance…oh the irony if top female biological athletes started getting breast reduction surgery to increase athletic performance! I just Google searched it and a Scottsdale, AZ doctor specializes in it. And it quotes Ronda Rousy saying her breasts are an “opponent”!
Assuming the autism spectrum is somewhat relevant to this discussion, I would like to ask a question related to it.
As I understand it, autistic people find it hard to impossible to form second order representations. In social situations, this manifests itself as finding it hard to see things from other peoples' standpoint or putting oneself in their shoes.
Autistic people thus tend to appear distant and detached, sort of in their own shell, and become disproportionately distressed by changes made around them which their condition renders more or completely unpredictable, due to not understanding or even being aware of other peoples' motivations.
But does this handicap extend to more abstract concepts? Would someone on the autism spectrum be more than averagely likely have difficulty grasping and constructively using certain mathematical or programming concepts for example?
I would guess they might find it hard to get their heads round pointers in programming languages, such as C/C++. They might also have an aversion to forking child processes, or synchronizing multiple parallel processes. As for functors in category theory, or cohomology in algebra and topology, I should think someone on the spectrum would want to run a mile!
But I haven't heard of any such specific difficulties encountered by people with Asbergers. If anything, my vague impression is that they are more than commonly adept at mastering and using these concepts, as many a STEM Phd on the spectrum might agree.
I think that people on the spectrum who have learned to function socially have to spend a lot of time concentrating on forming workable second-order theories of human behavior, because it doesn't come to them naturally. That is my experience anyway, along with that of many others.
This is often a cause of the introversion people on the spectrum are known for; they are not always detached from the situation, in fact they may be intensely observing the situation and developing a mental model of it. (Either that or they are exhausted from all that mental effort and need to take time to retreat and recharge.)
My pet theory is that people on the spectrum have a lot of practice developing cognitive models of interaction between entities in a deliberate way, because they need to do this in order to function in society. And this meta-skill can often make someone a very talented and effective programmer.
On the other hand neurotypical people were born with a greater intuitive understanding of human interaction, along with better proprioception, and so they don't need to exercise that particular meta-cognitive muscle just to complete basic life tasks.
"My pet theory is that people on the spectrum have a lot of practice developing cognitive models of interaction between entities in a deliberate way, because they need to do this in order to function in society. And this meta-skill can often make someone a very talented and effective programmer [or other STEMlord].
"On the other hand neurotypical people were born with a greater intuitive understanding of human interaction, along with better proprioception, and so they don't need to exercise that particular meta-cognitive muscle just to complete basic life tasks."
Makes sense to me. I don't have and am not seeking an autism diagnosis, but if I answer apparently fairly-reputable screening questionnaires, I'll fall into the "probably autistic category" (and I do have bodily weirdness consistent with EDS).
For me, seeing things from another's perspective was always very important, a basic reciprocal ethical demand, but also always cognitively *effortful*. Rather than "feel through" unspoken social rules, I had to "think through" why some things might be fair or reasonable, and other things might not be. I'm still rubbish at unspoken social rules that just don't seem to have an ethical *point*. Additionally, the careful thinking math involved (I was a math major) felt like an ethical duty to me.
We are surrounded by a dense network of implicit social messages and expectations that people on the autism spectrum typically struggle to grasp as readily as other people. The deficit ranges from severe to slight impairment - hence "spectrum" - and people's capacity to correct for it varies. A popular metaphor that seems to resonate for a lot of autistic people who are able to articulate their thoughts is that it's not on the hardware, so they have to make up for it on the software. People with this deficit who are able to effectively cope end up very deliberately studying social rules that most people just intuitively grasp to be able to keep up.
This act of conscious attention has advantages and disadvantages. People who are really good at it can come across as socially adept, if perhaps a bit robotic. Data from Star Trek: TNG used to be an autistic icon and is a good metaphor for this type of person.
Autism is an extremely heterogeneous "thing" that can't be summed up in a single sentence. There is no single characteristic shared by every autistic person.
The specific symptom you're describing - being bad at cognitive empathy - is quite common but not even close to universal. And a minority of us seem to be unusually *good* at it.
Re: your hypothesis about programming:
I personally use the same skills for predicting human agents, computer programs, fictional aliens, physical phenomena, etc. Questions of the form "How would a [rural Aghan villager/World of Warcraft API/sentient energy being/spherical horse] react to a [foreign soldier asking questions/command to display a texture/planet covered in meat-based life forms/gravitational force]?" are all handled by the same process: spin up a "virtual machine" in my head and try to simulate it.
I get the impression from my interactions with non-autistic people that this is *not normal.* Lots of neurotypical people seem to be pretty good at predicting other neurotypical people but *terrible* at simulating almost anything else. Many of them seem to struggle with the general concept of a hypothetical question (questions of the form "how would you feel if you were X" get responses like "I'm not X").
This isn't a neurotypical thing, exactly; lots of autistic people are also really bad at abstract thinking. My suspicion is that the abstract reasoning/mental modeling dimension is mostly orthogonal to the autism dimensions, and most autistic people's difficulty predicting/understanding other people is explained by something else.
Having autism cover such a huge range of issues is a huge disservice to the low functioning autistic people and their families because people think they have interacted with autistic people when they most likely haven’t interacted with low functioning autistic people. Did you watch the Academy Awards?? Brandon Fraser quit acting in part because his oldest son is low functioning autistic which is very disruptive to one’s life and obviously career. So his two other sons were in the audience but obviously he can’t bring his low functioning autistic son to the Academy Awards. So you never see pictures of him just like John Travolta’s son before he died and Stallone’s autistic son even though their other children are all over the tabloids. Why do you think Travolta’s wife pretty much quit acting?
Anyone who's active on the Internet has almost certainly interacted with people who were labeled "low-functioning" as children and has probably interacted with someone who could be described that way as an adult. "Functioning" evaluations heavily weight real-time meatspace social interactions.
A lot of people conflate "low-functioning" and "intellectually-disabled." The rate of intellectual disabilities is elevated in the autistic population, and there is some correlation between severity of autism symptoms and ID (mostly driven by common-causal genetic disorders). But there are still lots of bright, articulate, introspective "low-functioning" autistic people, and if you actually listen to them describe their internal experience, it's a lot closer to "high-functioning" autism than it looks.
So where was Brendan Fraser’s oldest son?? Try to find a picture of him while his other sons are all over the internet. I went to public school and we went to school with mentally disabled kids but none of them were low functioning non verbal autistic…all were just sub 75 IQ kids that could behave and participate in PE and probably ended up getting jobs at a grocery store and did a good job.
I'm not sure what you're asking? I don't really know who Brendan Fraser is, but I gather he's an actor who recently won a major award, and his oldest son wasn't there? Obviously he was at home, not wading through paparazzi to sit through some awful ceremony.
(I don't see what the big scandal is. My brother was recently nominated for a comparably major award in a slightly different industry and I wasn't there. Thankfully hardly anyone knows I exist, since apparently not going means...something?)
It’s not a scandal, I’m just saying his autistic son would not have been able to sit through the Academy Awards like the two younger sons. I’m probably on the spectrum but I grew up in the same neighborhood and never moved and so I had a lot of friends and high school was fun and I went to college with many of high school friends…and then only after graduating college did people start mistreating because I was apparently “quiet” which you are allowed to say as an insult and it is perfectly acceptable. But everything eventually worked out. I only wish working from home and smartphones had existed a few years earlier because that would have made my life much easier...I hated talking to people on phone calls and having to eat lunch around coworkers and using office restrooms.
"Anyone who's active on the Internet has almost certainly interacted with people who were labeled "low-functioning" as children and has probably interacted with someone who could be described that way as an adult"
I'm with Pangolin on this one. Job experience with the really low-functioning was like Scott's description of the patient who would chew his fingers off if left alone; a family with two teenage sons, both autistic, both low-functioning. One of them had to wear a motorcycle helmet pretty much 24/7 because otherwise he would bang his head against the wall to the point of injury, and they were applying for a home renovation grant so they could build on a padded room where he and the other boy could go for respite, where it wouldn't matter if he ran himself into the walls because then he couldn't get injured.
That is not someone who is going to be interacting on the Internet. You're right about low-functioning being related to social interaction/will this person be able to leave a sheltered environment and work in the normal world, but there's a huge difference between "reasonably intelligent, socially avoidant to a huge degree that is detrimental" and "can't be left alone even in a sheltered environment because they will physically harm themselves".
There are people who are not nearly as low-functioning as imagined on the autism spectrum - though I'd like to believe we've gotten better about this over time - with a lot of that having to do with misjudging people's overall cognitive ability based on expressive language skills.
At the same time, there is a whole pseudoscientific movement, in part driven by the dogged popularity of facilitated communication, that is grounded in attributing greater cognitive ability to so-called low functioning autistic individuals than is actually there. While it seems positive - what's wrong with overestimating someone? - the failure to meet people where they are actually at with whatever actual thoughts and desires they actually have can end up doing a lot of damage to them.
"I personally use the same skills for predicting human agents, computer programs, fictional aliens, physical phenomena, etc. Questions of the form "How would a [rural Aghan villager/World of Warcraft API/sentient energy being/spherical horse] react to a [foreign soldier asking questions/command to display a texture/planet covered in meat-based life forms/gravitational force]?" are all handled by the same process: spin up a "virtual machine" in my head and try to simulate it."
It's like acting: you model scenarios and go "what would be the appropriate reaction in this situation?" so that you have a range of "I should react by: smiling/gasping/sympathising/shaking my head and going tut-tut/asking them to tell me more" for when people talk to you about "This happened/I did this/what do you think about this?"
My genuine, unfiltered reactions would be "I don't give a damn, why are you asking me about this?" but that tends not to be the way normal people interact on a social level 😀 Hence the acting a part.
Please note that the following is lacking an official diagnosis so, ironically, I am in the same category of self-diagnosed as I complain about elsewhere.
Re: mathematical ability - some of my paternal family have it, and it seems to be linked to musicality. Those genes skipped me so I'm useless at maths (I would say I'm dyscalculic but again that's self-diagnosed) and I can't sing or play instruments and had a terrible time in music classes at school because every "identify the note" exercise had me going "they all sound the same".
Re: interpersonal/social interactions - I'm literal minded, so it's *very* easy to lie to me and I don't pick up on what, in retrospect, should be obvious cues. I've made a lot of people upset because I didn't react appropriately, and it was only replaying the incident afterwards and thinking about it that I realised "oh right, they were signalling X and I should have responded Y".
That means I can now, for short periods, fake 'normal' interactions. I don't have a script, as such, but I do have a list of "normal people like to talk about these things" and I try and remember things that are in the news or sports. It's easy to have a casual, short, small talk conversation when you drop in some cues (e.g. "last week Mary mentioned her son was starting university; ask her how he is getting on") and let the other person do the majority of the talking, and then five minutes later you all have to go back to work instead of having to sustain a conversation. This seems to be enough to keep the wheels of social interaction greased.
In some respects, this has gotten worse as I've gotten older, because I have fewer and fewer experiences in common (when I was younger, we were all equally unexposed to the wider world). Now people are married or partnered up, have kids, go on holidays, etc. and I can't fake it on "Oh yes, I just love Rimini!" or whatever (I got caught out in one job when my boss' boss dropped by and did some chit-chatting with us minions by asking me what was my favourite Italian holiday destination; luckily I was rescued by another co-worker who could see I was ABORT, RETRY, FAIL? and she redirected attention to herself by chatting with him about places they had visited). I am also utterly uninterested in people and so this can come across, but fortunately since I am utterly uninterested in people, I don't need the same level of human interaction and can get away with the bare minimum 'small talk' not to seem *too* much of a weirdo.
Smiling and nodding gets you a long way.
1. I would have be more interested in essay if it had been written this way: Do people with EDS report more gender dysphoria?
2. EDS is pretty rare <200k cases per year in US. (Although elsewhere I see reported as 1/5000.) https://www.frontiersin.org/articles/10.3389/fpsyt.2021.803898/full#:~:text=Recent%20large%2Dscale%20studies%20have,found%20in%20patients%20with%20EDS
3. I am generational challenged. Every time I see 'cis' I have to look it up and I am never quite sure how the trans prefix works. Trans(insert gender) means transitioning "from" insert gender or transitioning "to" insert gender?
A binary biological definition of "having Y" and "not having Y" seems straightforward to me. I'm not sure why it hasn't been adopted instead of often ambiguous phenotypical inquiries.
Whether one wants to claim "maleness" or "femaleness" or neither (regardless of immutable Y/not Y genotypical status seems to be a psychosocial and cultural question to be determined both by an autonomous individual and by an equally autonomous society.
To the extent that an individual wants to ostensible "prove" one's "claim" by resorting to chemical and/or surgical means aimed at changing phenotypology to me seems indistinguishable from body integrity identity disorder or xenomelia.
So there seem to be 2 classes of trans claims: those which are xenomelic and therefore per se mental illness and those which are not xenomelic and hence not per se mental illness but fall primarily into the category of egocentricity the degree of which is culturally determined.
Distinguishing between these two types of trans claimants would probably be useful in any associational investigation.
So if this is true, would you expect long-term swaddling to prevent some cases of autism?
Oh, oh. explanation 4.5 (or 5.0) Sex and flexibility and autism and... are all genetic spandrels from our self-domestication. Please read "The Goodness Paradox" by Richard Wrangham. He did identify a genetic pathway, but I can't recall what it was, and I have no idea if it is related to flexible joints. But it might be. I'll try and find that part of the book. (But it's St. Patty's day and I broke my Lentian abstention to have some corned beef, cabbage and a few Guinness! Yipee.)
Thank you for citation to Wrangham. My first instinct was to consider Girard. And thanks to you am reading Haw's review of The Goodness Paradox. (I doubt that flexibility and autism, etc are evolutionary spandrals becuase they have shown up pretty late to the game.) https://www.pdcnet.org//collection/fshow?id=covrb_2020_0066_0029_0033&pdfname=covrb_2020_0066_0000_0029_0033.pdf&file_type=pdf
The pyschosocial overlay is pretty thick (and maybe missed/hidden) in the discussions so far.
Yeah IDK. The genetic pathway had something to do with a surface and neural development in the early stages of development. Domesticated animals have all sorts of weird markers. Curly tails, floppy ears, white spots. (Also, smaller brains, longer childhood, and more mixed up sex.)
Re Book review: I'm hoping someone much better at writing than me, will do a book review here.
I've found that there are always plenty of reviews already existing for nearly everything "reviewed' here.
Hypermobility needs better definition. Saddle joints in the thumb connection to the palm run in my family. The rest of my (our) joints seem normal, or approximately so. But if you just asked me out of context, I'd probably say "yes, I have hypermobile joints.".
Related to women having looser joints, anecdotally, it seems to me that a higher percentage of women have elbows that hyper-extend. Does anyone have any data that support or reject this?
It's interesting how persistent people can be in "X is a social contamination" narrative regarding mental stuff. Often the same people, who are against mental blank slatism in other regards, just can't let go of it here. Transgender phenomena is a great example.
You think it's spreads by peer pressure and edginess? Guess what, it's correlated with autism, a heritable condition, which specifically makes people less susceptible to peer pressure. But of course, people just start assuming that autism is social contamination as well.
Okay, here is non-mental condition highly correlated with gender dysphoria: joints hypermobility. This can't possibly be a social contamination, right? But no, of course we will have the discourse how this condition is ticktockable and thus somehow also socially spread. Would anyone even think in this direction if not the link to gender dysphoria in the first place?
Of course the real cause has to do something with genes and complex biology, but discovering something new about such things is hard and requires a lot of effort. Smugly looking down on teenagers and being annoyed by their behaviour - doesn't. And thus we have a thriving epistemic minor league here.
The problem is that for certain social media outlets, the driver for contributors is to have followers. This is why we're always seeing stories about "new TikTok craze". And to stand out, you need a gimmick. And good gimmicks are to jump aboard whatever is in the news now regarding disability or trans or whatever.
So you get people claiming to have this, that, and the other disorder. They have young followers who copy them, because hey, this makes me stand out too and it requires others to give me affirmation and support! There was the rash of Tourettes:
https://www.wsj.com/articles/teen-girls-are-developing-tics-doctors-say-tiktok-could-be-a-factor-11634389201
Teenagers and young adults can be vulnerable to this kind of contagion because of emotional and psychological neediness. There's a ton of self-diagnosis going on, if you read the potted bios on Twitter and elsewhere there's an entire bingo card of "I'm this, I'm that". PTSD was popular, then that became so common that you had to stand out by being CPTSD from your traumatic childhood.
People casting about for a settled identity and looking for models and feeling like they somehow don't fit in right with what society requires and the culture of victimhood all combine to get people to think "hey, that sounds like me! my joints are kind of clicky!" Not because they intentionally want to scam, but because having a diagnosable medical condition means they have a *reason*.
I'm online acquainted with someone who has Ehlers-Danos. She's not trans, and she does have a bad time with it. It's not a fun disorder, it's not easy to live with. But it sure *sounds* exotic, if you're young and impressionable, and willing to think every tic and ache is something signifying A Disorder.
Is transness linked with this? Is it correlated with autism? Fucked if I know. But if it is, then that means that as you say, there is a genetic component. And being transgender may well be another disorder. But we're not supposed to say that, we're supposed to accept that it is normal and should be normalised and not made into a condition. And don't even hint at it being a mental illness. All the depression and anxiety and ten other disorders are just because people are insufficiently accepting of transgender people, and as soon as society treats it as being as normal as gay rights, then all the problems will magically go away.
I can see a constellation of factors meaning that a certain subset of people will have the trans, autistic, hypermobile joints, resistant to optical illusions and the rest of it. But not everyone, and not all at once - not all trans people will have the full set, not all autists will be trans, and so forth.
But for TikTok big names? Having the full bingo card just increases your star power, and it encourages your followers to be "just like me" in finding common ground with someone they admire, this is something relatable, I too have this thing!
"All the depression and anxiety and ten other disorders are just because people are insufficiently accepting of transgender people, and as soon as society treats it as being as normal as gay rights, then all the problems will magically go away."
I don't agree with this at all. Speaking from personal experience, my internal sense of dysphoria is a far greater source of psychological distress than any external social factors. Maybe the social factors are a worse problem for trans people who live in highly transphobic areas. But even then, I'd imagine that their internal feelings of dysphoria are still a major problem for them, just secondary to other problems like the fear of violence, lack of unemployment opportunities, and extreme loneliness resulting from transphobia.
My issue with classifying gender dysphoria as a mental disorder is that it leads a lot of people to misunderstand the nature of it. They see the term "mental disorder" and assume that it must be a *delusion* resulting from some kind of psychotic break with reality, as if a trans woman believing she's a woman is no different than a schizophrenic believing that he's Jesus or Elvis or JFK. This leads to people arguing that it's harmful for the medical establishment and society as a whole to "indulge" the trans person by acknowledging their preferred name and pronouns or giving them access to hormone treatments and gender affirming surgeries, despite the fact that studies have consistently demonstrated that socially and medically transitioning is incredibly beneficial to people with moderate to severe gender dysphoria.
In truth, I think a better comparison would be phantom limb syndrome - a form of distress that, while psychological in nature, results from a problem with the body. The pain is mental, sure, but I wouldn't say that it's a mental disorder in the same way that OCD is. (Of course, the distinction between physical and mental illnesses has always been blurry anyway. There's increasing evidence that some forms of depression may be rooted in physical factors such as inflammation and immune system reactions.)
However, I do fully agree with you that it's a *disorder.* Just not the type of disorder that the anti-trans crowd thinks it is.
Does the sensory experience of a weighted blanket fall under 'proprioception'? I thought proprioception was more to do with bodily location and movement rather than sensory perception as a whole.
The umbrella term including proprioception strictu sensu and peripheral sensor input would be mechanoreception, I reckon.
so I have ehlers danlos and the connections and logic in the post seem spurious at best.
Not producing a foundational structural collagen protein to spec will undoubtedly create adverse conditions body-wide, including in the brain...
boom simple
Two things.
1) If weird collagen makes the brain weird, too, then how? Is it because a weird-collagen brain is so weird all by itself that it would be weird even in an otherwise-normal body, or do brains that must adapt to sufficiently-odd bodies learn to be weird? (It's not an exclusive or.)
2) Even a non-quack EDS diagnosis needn't come with direct proof of weird collagen. Mine didn't. My above-threshold joint and skin abnormalities are consistent with a weird-collagen hypothesis, but nobody ever analyzed my collagen to pinpoint what, exactly, about it is weird.
The evidence labeling my collagen weird is all indirect. I can't swear that what's odd about my connective tissues is caused by weird collagen, rather than resulting from other weirdness, perhaps neuro- or immuno-logical.
I'd find it implausible for brain alone to explain my abnormal scarring, absent behaviors, like picking, that I know I avoided (a skeptic could say I *don't* know that I avoided them – that I'm in denial about my behavior, or I can't really know what I do when I sleep, anyhow), but even then, maybe other brains are better at modifying motion to take strain off still-healing wounds than my brain is. Certainly, asthma and atopy marked me as "immunologically weird" long before an EDS diagnosis did, and the immune system seems to have a say in scarring. Explaining away skin loose enough to pass the "abnormal" threshold without appealing to weird collagen is harder, but even then, maybe normal people flinch away in self-preservation sooner than I do when their skin is yanked for measurement? (Neck skin loose enough to pull over the face seems like more than "not flinching", but the threshold for "measurably abnormal" looseness has been set much lower than that, else I wouldn't meet it.)
Spitballing reasons why "maybe it's not the collagen" leaves me feeling a bit like a young-earth creationist, explaining that God is not only so sovereign that he could create a whole world, complete with deceptive fossil records, in under an earth-week, but would be a big enough dick to want to do that to sentient beings whose greatest fulfillment should be in trusting Him. "Keep it simple: it's the collagen," seems less like special pleading by comparison. But I don't directly know that it is the collagen, and sometimes the simple explanation is the wrong one.
It's not just EDS. I was born with pectus excavatum (known colloquially as funnel chest), a condition in which the chest cavity is caved in. Thankfully, my case is fairly mild and unlikely to cause any major health problems, but I've known people with more severe cases.
It's not a common condition. Only about 1 in 300 cis men and 1 in 1000 cis women are affected by it. However, a fairly large online survey of trans communities in Reddit found that *1 in 25* male-to-female trans people had it! I'm aware that there's very limited value in online survey results, but this still seems to be a correlation worth looking into. Maybe include a question about pectus excavatum on your next ACX survey?
More anecdotally, I've known a disproportionate number of trans people (both trans women and trans men) who had some sort of autoimmune disorder. I've also noticed that trans people seem to suffer from chronic pain - particularly joint and muscle aches - much more often than cis people. This includes people who are gender dysphoric but haven't started medicinally transitioning yet, so it can't be explained away as the result of hormone treatments or surgeries alone.
My guess is that being trans is caused by some kind of overarching issue with the structure of the body, which causes both the mental/sensory experience of gender dysphoria and a greater propensity to autoimmune disorders and muscle/joint/connective tissue problems. This wouldn't be mutually exclusive with either the Genetics or Autism hypotheses; all three of them could be true and tied together to some degree.
"More anecdotally, I've known a disproportionate number of trans people (both trans women and trans men) who had some sort of autoimmune disorder. I've also noticed that trans people seem to suffer from chronic pain - particularly joint and muscle aches - much more often than cis people"
Gender dysphoria is a functional neurologic disorder, and also in some cases theorized to be a neuro-endocrine disorder in which the hormone receptors in the brain and nervous system do not have the ability to to respond to circulating endogenous sex hormones the way they should. The outcome of either theory is that the brain and nervous system does not really recognize the body and congenital sex characteristics as self, which will cause cascading neurologic, psychologic, and psychosomatic symptoms. Because of the very strong connections between the nervous system and immune system, it's not impossible that some activation of the immune system ensues to deal with aspects of the body or hormone circulations not recognized as self, but I don't think any research has been done on this subject.
Thanks for the information! I hope we see more scientific and medical research on trans people and gender dysphoria in the years to come. There's so much we still don't understand.
Anecdotally, I have a sibling who's a trans woman, and while they don't have an official EDS diagnosis, they struggled with hypermobile joints for many years prior to transitioning, to the point that it seriously impacted their quality of life (although it's manageable now after years of strength training). Was very interesting to see such a high correlation here!
They've also had other weird bodily issues, like a hip impingement from a non cancerous growth that needed to be surgically removed.
Analyzing traits of TG people is horribly handicapped by the general reluctance to acknowledge that there are very different things causing transition both within and across assigned-sex-at-birth.
On the AMAB side, you have A)n naturally effeminate people attracted to boys (Laverne Cox) and you have B) basically crossdressers taking it further than usual (Lana Wachowski). Given the enormous social costs to transitioning, it is no surprise that among people who have whatever Thing X results in crossdressing, the people who actually decide to transition are more neurodivergent. They are not exaclty FINE with losing career opportunity, alienating family, etc, but they do not place as much value on that as the ones who choose routes other than transition to deal with Thing X. And they fit in better with their new cohort, as you see this group is full of the sort of nerdy hobbies and subcultures that one would commonly ascribe to Asperger's folks back in the day.
So anything correlating with AMAB TG people is not really correlating with the TG part, it's correlating with the traits that caused them to choose transition over trying to live the normie life with a wife and picket fence and 2.5 kids and no Marxist polycules.
If you want to actually study such correlations, you need to also sweep for the people who WOULD transition under other social, economic, and technological circumstances.
Any thoughts on the studies which found roughly the same unusual, sex-atypical neural markers in heterosexual and homosexual transgender women who have yet to undergo hormone replacement therapy after controlling for the trans-nonspecific impact of sexual orientation on brain structure? They're *very* small but to the best of my knowledge every study that actually tried this got results that point in the same direction. That 2016 meta-analysis everyone likes to point to did not account for sexual orientation.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5738422/
https://www.jneurosci.org/content/34/46/15466
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6677918/
I doubt the idea that there is a single factor that moves people to transition, mind, but I doubt Blanchard's typology even more. Human motivations are very rarely as clean as this.
Who is Blanchard and what does his typology have to do with Cjw's comment? I don't see any mention of a Blanchard in it.
The two trajectories Cjw mentioned are taken from a famous hypothesis about the etiology of transness, created by a doctor named Ray Blanchard.
https://en.wikipedia.org/wiki/Blanchard%27s_transsexualism_typology
The particular cause doesn’t matter that much to the problem I’m identifying. The issue is that, out of the universe of people who might transition, the ones who choose to do so will have different frequency of traits from those who do not. If they had enough social skills to end up with a talky profession and/or build up significant social capital, the cost/benefit analysis is much different than if they are a WFH programmer with a social life concentrated in nerdy subcultures. So when one observes, as we do, a higher incidence of neurodivergence and spectrum-y interests among transpeople, that is only telling us something about the subset that chooses to openly explore transition. So the traits you find if you survey them may be associated with people who place a low value on social conformity, and not with whatever is going on below the surface to cause this.
There is excellent evidence out there on the link between ME/CFS and hypermobility, even if it is little publicized, eg https://doi.org/10.7861%2Fclinmed.2020-0743. I saw a similar study in 2004, although it's not online, and was mostly ignored.
This 2004 paper describes a plausible causal mechanism you neglect. Root cause is lax muscle tone. This causes both hypermobility and, through smooth muscles of the vein, low blood pressure. People adapt to the low blood pressure through overstimulation or hypersensitivity to stimulation. Being perpetually overstimulated is a marginally stable way of regulating, that can collapse into the dysregulation of ME/CFS. This also explains why the classic ME/CFS patient was perceived as having above average energy/activity levels prior to getting sick. No idea how it explains the link between hypermobility and transgenderism.
Neither ME/CFS nor Long COVID is "just fatigue". Everyone thinks it has a strong neurological basis in the autonomic system, but no serious scientist thinks you can psych your way into it, any more than you can psych your way into hypermobility. Your position to the contrary is incompatible with the biomarker evidence https://doi.org/10.1101/2022.08.09.22278592. It's also incompatible with the fact that Long COVID can be avoided by metformin treatment. It would be good if you used your platform and reputation for following evidence to help vulnerable (hypermobile) people avoid having their lives destroyed by Long COVID by taking metformin, rather than telling them it's all in their head.
I hope you never learn this the hard way. As someone who recovered from ME/CFS after 10 years, but gets the occasional relapse after an infection, I am reminded each time how utterly different fatigue is from ordinary tiredness. When my husband went through gruelling chemo, a light bulb finally went off "oh THAT's what you meant for all those years by fatigue" - nothing in his previous life experience was anything like it.
I forgot to include the all-important metformin prevents Long COVID link https://papers.ssrn.com/sol3/papers.cfm?abstract_id=4375620
"Being perpetually overstimulated is a marginally stable way of regulating, that can collapse."
Sorry to be sharing a PowerPoint, but it seems quicker than a YouTube vid for sharing Dr Pocinki's claims about pseudo-psychiatric symptoms in dysautonomia:
https://issuu.com/markmartino8/docs/pocinki_pseudopsychiatric_symptoms_
Since fainting upon standing during adolescence runs in my family (probably along with EDS), I'm likely not autonomically normal. Still, I don't usually find autonomic symptoms terribly bothersome. My heart goes out to those who do, though, and who find that behavioral healthcare addresses their symptoms poorly.
So much of behavioral healthcare revolves around curbing Wrongfeels with Rightthink: if we tell ourselves more constructive narratives, or at least silence the typical self-defeating ones, our Wrongfeels really should diminish. If we still suffer from Wrongfeels after learning the Rightthink, behavioral healthcare could move on to, "OK, let's try to help you manage your life better given these Wrongfeels" – but persisting Wrongfeels could also be interpreted as evidence that the patient hasn't committed hard enough to Rightthink.
Of course, if you're really doing the Rightthink, and the Rightthink does little to quell the noxiousness of Wrongfeels, that experience also makes Rightthink less plausible as a cure (and less compelling to commit to) – which might be fine if, "We can't promise you cure, but at least better management," were a promise providers themselves stuck to. But do they?
I think behavioral training *should* help me manage, and I'm giving it another go now (atomic habits bootcamp, yay/ugh!). But when my previous provider left BigHospCorp's practice during COVID, and I was reassigned for re-intake, I got someone who meant well, but who also seemed to attribute my mentioning any physical difficulty to "health anxiety". True, my re-intake coincided with an unusual physical flare, perhaps due to Moderna #2. Still, everyone at BigHospCorp, including re-intake, should have been looking at the same chart for me, marked with the same severity of asthma, the same knee surgeries, and the same geneticist – nominally their colleague – having diagnosed EDS. Maybe I was stupid for answering intake's sleep question with, "Right now, I'm losing sleep to asthma and knee pain"? Maybe consumers should simply *know better* than to mention physical problems to behavioral health personnel, at least at first? Still, "health anxiety" involves habits I just don't have, which isn't hard to figure out.
I worry about *demoralization* over the physical grind I face, blaming my own poor morale rather than the innate severity of the grind for my not coping better. Surely, a morally-normal person would just cope with this shit! Plenty of folks physically worse-off than I am seem to cope OK. So why am I morally-broken enough not to? That's a worry – hypochondrophobia! – that eats at me. But asthma and knee pain are better thieves of sleep than my worries are. And, no offense, intake, asthma and knee pain are well-known for this. I'm not optimistic about what intake would make of autonomic symptoms, if some poor patient interested in coping with them better wanted professional behavioral help.
Thanks for that link! My fainting in adolescence was easily cured with a high salt diet, and I didn't think further of it, but ME/CFS in my 20s was a different matter. At least I was lucky enough to have a diagnosing doctor who told me I was getting better management not a cure. Many years later, I studied advanced pranayama techniques, which are pretty extraordinary for their ability to directly train the autonomic system. Within weeks I was both off beta blockers and doing dramatically better. However, skilled pranayama teachers can be hard to find. Doctors give beginner level breathing instruction that is no comparison. Autonomic training in the medical system could get a lot better.
It bugs me when trans-unfriendly news sources say "what if a lot of kids presenting as trans aren't actually trans, but autistic?" I don't see why the two should be mutually exclusive, and there's good reasons for thinking the two could be correlated in a meaningful way such as having a common cause.
Implications for hormone treatment are for course a much more complex question.
My sense is (still) that (often minor/marginal/multi-causal) endocrine variation is a major cause of gender variation, and is pretty plausibly also a cause of joint hypermobility. The/a mechanism for endocrinology->gender could still be proprioceptive experience via atypical collagen, but I think that's unnecessarily complicated.
(Also I don't think you asked the necessary survey questions and it kind of doesn't matter because the sample is already underpowered, but this seems like a case where it'd be worth specifying chromosomes vs identification vs hormone profile for M/F/X, since the interaction between each is the subject of investigation.)
1) seems sensible to use as the default position until other evidence emerges. Possibly combined with how autist and trans people both seem to be hyper-aware of their bodies, which could easily exacerbate things?
When a disease is both hot on TikTok and has fuzzy diagnostic criteria, this is a recipe for weird outcomes.
Also, I'm unclear from the description if the issue is with both FtM and MtF? If it's only one direction, an underlying hormonal or genetic condition doesn't seem unlikely - if both, then social factors seem very likely?
Geezer Mother of grown Zebras posting here. Zebras are folks with EDS who have been told that when you hear hoofbeats, look for HORSES, which often delays diagnosis of a very real physical condition for 10-15 years. Which is why many younger folks go online when their local GP is clueless as to why something is clearly not right/normal. There are two different things here which aren't fully understood, which aren't necessarily paired - transgenders and EDS. First the Transgender thing. Given that one's GENDER is a social construct which is largely based on how folks who have a certain sexual role look in a particular historical era, Gender and how one manifests it seems to be pretty fluid particularly in anyone under say, age 30. Or maybe 40. Particularly those with kids who are Young Millennials and down. Gender roles do change and in different cultures there are different expectations of how one acts. A real man in the era of King Charles II wore lovelocks, high heels at court with stockings, and wrote passionate poetry to men and women with obscure references in Latin and Greek. After Beau Brummell's dark suited elegance charmed the dissolute court of the Prince Regent, the feathers of most peacocks tails were ripped out. These days, particularly in places like Texas, a lot of kids are taught by their family (often Christians who have "married up" multiple times) to rigidly conform to what their family/church/social group says is "how one should be." Kids often do this conforming/blending in with great zest in order to please all in their younger years. They have to have the right stuff, wear the right stuff. Belong to the right groups. Do the right sports. When the same kids reach puberty, they start moving outside of the bubbles their parents have carefully constructed around them and discover the world is a very different place than they were taught. Which leads to explorations of their social roles, life, the universe, and everything. Many these kids conform socially into their 20's with with The Family or In Church, but have a rich online social life which their "conservative" parents have no idea exists. Now Ehlers Danlos Syndrome (EDS or Zebras). A MEDICAL condition that's not well understood by your average GP or "local" non big city medical specialists. EDS folk often start experiencing very real bodywide chronic pain from preteen years. Sometimes they are told it's Fibro, or chronic pain syndrome, or this or that (it's not in your head but in your connective tissues) until they find a physician who is up to date. When it's not diagnosed, when they are told they need to "push through it" by a series of doctors (and kin), they will of course wander into other online communities in order to learn what's happening and importantly, how to cope when it takes 10 spoons to get through your day and you are given only 3. EDS is not just hypermobility and there are different types with the vascular EDS the worse (aortic ruptures in early adulthood). The ENTIRE body is affected. Think the gut and digestion. Some of us have the MTHFR gene that removes our ability to process the kinds of Folate that is put into bread to enrich it for "normal" people. MTHFR is associated with Autism, ADHD, OCD, and other things which certainly didn't stop my ancestors from being productive citizens, business owners, farmers, teachers, government employees, scientists, doctors, and soldiers. Some of us react different than the "norm" to medications and wake up during surgeries or dental procedures. EDS can affect VISION. Our vision can change during the day because our muscles that control the eye get lax. I've got Macular Degeneration pretty young going (like my Mom and aunts) as the macular has crappy connective tissue in there. There's more fun. EDS is often paired with POTs syndrome, Postural Orthostatic Tachycardia which is a Dysautonomia. Essentially, and I am GENERALIZING so don't jump on me, the vagus nerve is the body's command and control for our autonomic nervous system. Damage to the vagus nerve that's by a virus, or a bad illness, or an accident (a bad car wreck triggered a neighbor's sister's POTs), ANY of these can trigger a Dysautonomia. If you have, I'm guessing the "right" genetics, this activates a gene that turns "on." And BINGO. Note that Long Covid sufferers are now being diagnosed with POTs Syndrome. (As are folks with Lyme, Lupus, Epstein Barr/Mono.) The key for many who are younger is to get a real DIAGNOSIS, then figure out what to do/study so that you can work and get accommodations at work. Because of this you see more of the "work from home" and "I live online in a global community" types of folks who often literally CANNOT get out of bed to get to work. So they work from bed. In their room. And if they have STEM abilities (or good Maths teachers), they survive better than those who did Cheer and Ballet and suddenly are laid up. One last thing, GENETICS can play a role in EDS. I got started on genealogical research as to why the heck both my parent's unrelated families have EDS, POTs, Dysautonomia showing up in kids/teens these days. Of course now that GP's and specialists are getting a clue, getting a diagnosis is EASIER. Anyway, my research has hinted that EDS entered the British Colonies with my ancestors (who often fought in the Revolution) - either with British Quakers (Welsh, Midlands, Scots, Bristol) or with refugees from the Wars of the Rhine Palatinate who can over en mass in 1720, arriving in Philadelphia ("Pennsylvania Dutch") as well as numerous Southern ports. They ID'd as "German" or sometimes of "French" ancestry as Alsace Lorraine was part of the region. The two groups QUAKERS and the "GERMANS" intermarried in the USA from about 1850, instead of just marrying into their own cultures. This means a HUGE subset of the US population could have this kind of genetics which IF ACTIVATED can trigger a host of issues. A plus for Zebras is we usually dislocate rather than break limbs when we fall out of trees or are thrown off horses. And yes, Abraham Lincoln had EDS, the type that's called MARFANS.
I've been diagnosed with joint hypermobility, and I think it's similar to what you wrote about in your Geography of Madness post. Chronic pain and other sorts of issues are very much susceptible to social contagion.
Webinar by Jessica Eccles on neurodiversity and EDS, which also touches on gender: https://www.ehlers-danlos.org/information/webinar-hypermobility-and-neurodiversity/
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55min, very pleasant listening.
I'm reminded of work finding links between finger length ratio and sexual orientation. The notion is that a common developmental event that influences both bone and the brain explains the phenomenon. Speculations include the presence of androgen and estrogen receptors in bone; and maternal immunity to male-ness, since a correlation with the number of biological older brothers was found in gay men. In any case, if the relationship between gender identity and EDS holds up, this would be another clue that some common developmental event links bone & joint development to psychosexuality.
Wonder if it's EDS messing with the brain and nervous system so extensively that it causes symptoms that resemble these other conditions, and neuroscientists just haven't been able to differentiate the two. Gender dysphoria and autism are both functional neurologic conditions, and I hear a lot of stories of EDS patients with similar functional neurologic issues and issues with their central nervous system. For instance, can certain forms of EDS cause problems with hormone receptors in the brain, abnormal endocrine or neuro-endocrine functioning, or structural/functional problems with the brain's body map [xenomelia]? All of these problems are proposed mechanisms for the development of gender dysphoria. Would be interesting to know whether collagen mutations can affect these systems.
> EDS diagnosis in our patient population is 132 times the highest reported prevalence in the general population
> Ehlers-Danlos: 0.36% cis vs. 0.37% trans
It seems weird for no one to comment on the fact that the correlations noted by Najafian et al and Jones et al appear quite muted in the ACX data, so I do so hereby comment.
EDS (along with CFS/ME, which got insulted instead of just ignored) is coming into focus now... it's probably historically been massively under-diagnosed. I don't know why it would be more prevalent in trans people but I wanted to thank you for actually putting thought into this instead of just reading "instagrammable" and "special snowflakes" and dismissing the entire thing. EDS and CFS are both real illnesses with actual biomarkers, they are just hard to diagnose or treat and the attitude of the medical establishment (though it seems to be getting better now - long covid actually kind of helped) has historically been extremely dismissive. But it's also helpful to acknowledge that these things exist on a spectrum and just as you can have hypermobility without having EDS, and fatigue without CFS, you can also have EDS or CFS at different severities. People who might have had a milder form of EDS in years past would probably not have known about it, because the awareness just wasn't there and it wasn't as completely imperative to their lives, to get a diagnosis.