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'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.