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> So apparently when a doctor in a white coat tells these people they definitely don't have Tourettes, the behavior stops?

I don't know if there's a general term for this, but there seem to be a category of syndromes where if you're high-functioning with the syndrome, then it's possible to suppress the symptoms, and whether you're expected to suppress the symptoms depends on whether a doctor "grants you the privilege" of a diagnosis of having the disease.

For example, Hikikomori in Japan—these people almost certainly have Social Anxiety Disorder, but it's their parents/caregivers that enable them to live as recluses, and they only tend to do this if they believe their child has some sort of clear mental illness. If they take their child to a psychiatrist and the psychiatrist says "nope, no social anxiety, they just like staying home to play video games", then the parents would likely stop enabling the child to stay in their room all the time, and instead would force them to go out. Even if it turns out that the child really just has high-functioning Social Anxiety Disorder, to the point where it's "masked" from a signs-and-symptoms based diagnosis; and so is still markedly suffering when made to go out in public. Without the diagnosis, they're no longer allowed to be free from social approbation when they avoid people.

I would think a similar thing could be at play in "high-functioning", able-to-be-suppressed-with-constant-effort Tourettes cases: without the diagnosis (or rather, with a negative diagnosis), nobody around you will tolerate a Tourettes outburst from you, so you just have to "suck it up" and mask it as hard as you can. Also, given the negative diagnosis, your supporters will likely no longer associate the more subtle symptoms with Tourettes, as they now "know" you don't have it; so they'll mentally categorize those tics, if they do show up, as being something else.

In such cases, you'd also expect that if someone had always known such symptoms were socially-unacceptable and so had always been actively suppressing them, then finding out that there's a disease they might have where presenting these symptoms would be considered socially-acceptable in the context of having that disease, would mean they'd suddenly be willing to start 1. claiming they have the disease, and 2. presenting the symptoms—but only after people know and understand their claim to have the disease, as the whole point is to be able to finally "let out" the symptoms while avoiding social approbation for them.

> So a sudden swing in the sex ratio for a disease that's long been presumed to have some kind of male-associated underlying genetic basis that lines up with a prominent female influence seems like pretty strong evidence for their theory.

Charitable interpretation: women are underdiagnosed with Tourettes, because some combination of hormonal and social factors generally leads to them generally being higher-functioning — i.e. "leaking" the symptoms less. But actually, they're still being impacted, just silently (i.e. their dopamine is being drained faster by having to "fight the urge", much like someone with OCD.)

This is the current hypothesis for the gender disparity in diagnosis of childhood ADHD. It's very underdiagnosed in girls (which we know because a lot of these undiagnosed girls become adult women who go to a psychiatrist and find out they have adult ADHD, and then think back and realize they've always had the internal experience of ADHD but were never diagnosed.) We think this is because girls are more trait-conscientious, which leads to them being more motivated to not let (socially-unacceptable) hyperactivity symptoms "leak", while still internally suffering from those symptoms, and visibly suffering from the more socially-acceptable symptoms (which alone aren't usually enough for people to put two and two together and send them to a psychiatrist for diagnosis.)

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All that being said, yeah, I don't think this is really "high-functioning Tourettes." That isn't quite how Tourettes works; there's a lot of involuntary stuff in Tourettes that absolutely cannot be suppressed no matter how much you might want to, and

But there are a number of etiologies with related symptom profiles. My guess about what actual "property" these girls are actually noticing about themselves, is that they're high-functioning on the autistic spectrum (another thing underdiagnosed in women!) and so find that stimming behaviors — which can look a lot like Tourettes motor tics, but are actually voluntary, just highly preferred to be executed when possible — help to calm certain sensory processing problems they have.




> I would think a similar thing could be at play in "high-functioning", able-to-be-suppressed-with-constant-effort Tourettes cases: without the diagnosis (or rather, with a negative diagnosis), nobody around you will tolerate a Tourettes outburst from you, so you just have to "suck it up" and mask it as hard as you can.

Tourette's can't really be suppressed consistently, it comes out eventually, and suppressing it now just makes it worse later. It is very hard to hide -- believe me, I've tried. Also, see the comment in the above thread -- one pretty strong giveaway is an entire lack of facial tics and other classic tells. I have a ton of the "famous" Tourette's symptoms -- coprolalia, echolalia, palilalia, even a small touch of the dreaded copropraxia, not to mention at times extremely exaggerated arm movements (beating my chest like a gorilla is the most common). However, my first tics, and which continue as a constant background noise, are small facial grimaces, nose wrinkles, blinks, making tiny grunts, etc. It is extremely anomalous to see someone present with "Tourette's" and not have any of those low level tics, but all the "fancy" ones.

> Charitable interpretation: women are underdiagnosed with Tourettes, because some combination of hormonal and social factors generally leads to them generally being higher-functioning — i.e. "leaking" the symptoms less. But actually, they're still being impacted, just silently (i.e. their dopamine is being drained faster by having to "fight the urge", much like someone with OCD.)

I'm more than willing to keep an open mind, but look at the effect size.

Swinging from 1:4.3 to 9:1 is a change of 38X. That is RIDICULOUSLY huge. I'm happy to postulate that women are undiagnosed to some degree, but a swing of that size, that is that sudden, and which lines up so closely with a specific group and a specific female influencer, based primarily on observed novel physical symptoms, charitably speaking at least merits a little scrutiny, wouldn't you think? A mere 1.5X change would be enormous, 38X is astronomical.


> Swinging from 1:4.3 to 9:1 is a change of 38X. That is RIDICULOUSLY huge.

Those numbers would not be as bad if one postulates that there's a subset of men who also have the right factors to lead to underdiagnosis, such that the right influencer with a male audience would make men's numbers shoot up as well; and that such a mens' influencer just happened to have not shown up yet.

> It is extremely anomalous to see someone present with "Tourette's" and not have any of those low level tics, but all the "fancy" ones.

Is it possible that there is an undiscovered "diagnostic spectrum" on which Tourettes is the endpoint? Like how, at some point, we knew low-functioning autism was a thing, but only later figured out that high-functioning autism (e.g. Asperger's) was a thing?

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(That being said, I do think I agree with you that this probably isn't Tourettes of any kind; see the postscript in my previous comment. I just like to ask these Devil's Advocate kind of questions to see where they go, in case there's interesting science down one of these unwalked paths.)


Yeah, so the thing is we don't actually know the underlying cause of Tourette's. It's just a syndrome -- a specific pattern of symptoms you draw a circle around and label it "Tourette's syndrome." Therefore, what is and is not Tourette's is fairly tautological. If you have these symptoms according to this pattern, you have it. If you don't, you don't. It's entirely plausible that Tourette's syndrome is caused by multiple different underlying pathologies, which actually wouldn't be super implausible given the wildly different ways in which different patients with similar symptoms respond to the same medications.

But my point is, the diagnostic criteria are pretty clear, and (most of) these kids aren't matching them. And any time you see a whopping big effect size like that your skepticism lights need to go off. Either you just discovered the find of the century, or you have a basic measurement error. In either case the proper course of action is to subject it to more scrutiny.


I have a feeling that what the people who are "diagnosing themselves with Tourettes" are really trying to say here, then (i.e. "what they'd say if they were all trained psychiatrists"), isn't that they think they have exactly the Tourette Syndrome symptom-cluster; but rather that they think they may have a lesser form of some particular as-yet-unknown pathology that, in its full extent, would be an etiology underlying the syndrome of Tourettes; and that this is causing a cluster of symptoms for them that is similar-but-not-identical to the Tourette Syndrome symptom-cluster — similar-enough that there's nothing really better to describe it by than by comparison to Tourette Syndrome. (Though certainly doctors would come up with a unique name for it in the DSM-VI, if it turned out to not be induced mass Munchhausen's.)


I don't necessarily disagree; I went undiagnosed with Tourette's as a kid while presenting symptoms for a good five years and I knew something was going on with me but I had no idea what it could be.

Also, a good ~10 years after my tourette's diagnosis I was further diagnosed with cataplectic narcolepsy. I knew I had always had these weird symptoms (going spontaneously limp) that weren't well described by Tourette's, but I was grasping at straws to figure out what it was, and trying to self-diagnose I took myself down all sorts of blind alleys convincing myself I had this or that. Once I was able to get a conclusive diagnosis and actually helpful treatment, my narcolepsy symptoms got very well controlled, and then with that stressor off my back my tourette's symptoms finally became manageable without medication. All the symptoms are still "there" but knowing what I actually have -- and what I don't have -- was crucial to getting the right treatment.


> I knew I had always had these weird symptoms (going spontaneously limp) that weren't well described by Tourette's

I wonder how many people who have non-manageable Tourette’s have an undiagnosed comorbidity like this.

Also, your specific case is interesting, because a comorbidity of a type of narcolepsy points more generally in the direction of an interesting cluster of sleep-related “parts of the brain’s sleep motor-inhibition filter turn on while others remain off” conditions, e.g. sleep-walking, sleep paralysis, etc. that — if it turns out a lot of other Tourette’s sufferers had [undiagnosed] comorbidities in this cluster — could potentially be a good fit for “recontextualizing” Tourette’s, or perhaps even finding a true etiology for it. Has anyone looked for these sorts of links, and/or studied Tourette’s from a sleep-neurology perspective?




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