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Women with complete androgen insensitivity syndrome

262 replies

Tandora · 01/08/2024 17:22

https://www.nhs.uk/conditions/androgen-insensitivity-syndrome/symptoms/#:~:text=Girls%20with%20CAIS%20do%20not,make%20some%20sexual%20acts%20difficult.
Inspired by the dumpster fire of a certain thread that filled up just now -
AIBU to share some information about girls and women with CAIS. Many of these women and girls won’t learn about their variation in sex characteristics until adulthood. Some might never know and not without the assistance of modern technologies (that can test , eg, karyotype). For cases of CAIS identified at birth, most individuals are assigned/ registered/ raised female. (Yes sex can be assigned).

Anyone who could know a girl/ woman with CAIS in the real world, and tell her she is , in fact , unambiguously a boy/ man, because gametes, - well you would deserve worse than to be called a sexual fascist.

The NHS recognises the existence of girls and women with CAIS , and provides medical interventions accordingly.

https://www.nhs.uk/conditions/androgen-insensitivity-syndrome/symptoms/#:~:text=Girls%20with%20CAIS%20do%20not,make%20some%20sexual%20acts%20difficult.

https://www.ncbi.nlm.nih.gov/books/NBK1429/

Yes these conditions are rare, but the more we learn about the biology of sex development , the more complex the picture becomes, as with most areas of science/ biology/ medicine .

nhs.uk

Androgen insensitivity syndrome - Symptoms

Read more about the symptoms of androgen insensitivity syndrome (AIS), which vary depending on whether the insensitivity is partial or complete.

https://www.nhs.uk/conditions/androgen-insensitivity-syndrome/symptoms#:~:text=Girls%20with%20CAIS%20do%20not,make%20some%20sexual%20acts%20difficult.

OP posts:
Tandora · 01/08/2024 20:50

SilenceInside · 01/08/2024 20:49

@Tandora of course there are tests that can determine sex in complex cases. Are you concerned that because there is no single individual test that can be done? So the fact that a series of different tests might be necessary, that's an issue for you?

tell me the series of tests, and how the different factors are to be prioritised/ balanced/ reconciled?

OP posts:
SilenceInside · 01/08/2024 20:50

If that wasn't possible, then DSDs would not be known or identifiable.

SilenceInside · 01/08/2024 20:49

@Tandora of course there are tests that can determine sex in complex cases. Are you concerned that because there is no single individual test that can be done? So the fact that a series of different tests might be necessary, that's an issue for you?

Tandora · 01/08/2024 20:49

MissScarletInTheBallroom · 01/08/2024 20:49

I have done so, in this thread.

Where?

OP posts:
MissScarletInTheBallroom · 01/08/2024 20:49

Tandora · 01/08/2024 20:48

if I am talking bollox please do describe this sex test, and point me to the scientific consensus endorsing it.

I have done so, in this thread.

MissScarletInTheBallroom · 01/08/2024 20:48

Tandora · 01/08/2024 20:43

sorry just pure exasperation. What you wrote just makes little sense. Of course we can identify sex categories in cases where there is no dispute - we are all agreed, all the various, complex factors that make up someone’s sex are aligned. In cases where there is a dispute, however, there is no objective, reliable test to determine a persons sex/ gender.

Edited

Are you a doctor?

Tandora · 01/08/2024 20:48

KeirSpoutsTwaddle · 01/08/2024 20:46

So much bollocks talked in so small a space.

if I am talking bollox please do describe this sex test, and point me to the scientific consensus endorsing it.

OP posts:
KeirSpoutsTwaddle · 01/08/2024 20:46

So much bollocks talked in so small a space.

Tandora · 01/08/2024 20:46

OpizpuHeuvHiyo · 01/08/2024 20:29

Quite right. They obviously mean a sex test but are using the word gender because they are too coy to use the word sex (which was normal usage up till about 10 years ago)

There is absolutely no way to verify someone's gender, or lack of gender. But sports are subdivided according to sex because there's absolutely no legitimate reason to subdivide according to gender.

This isn’t about terminology. The same goes for sex.

OP posts:
Tandora · 01/08/2024 20:43

SilenceInside · 01/08/2024 20:31

@Tandora what happened to your "let's have a reasonable debate"! A face palm is hardly helpful. Explain why I'm wrong.

sorry just pure exasperation. What you wrote just makes little sense. Of course we can identify sex categories in cases where there is no dispute - we are all agreed, all the various, complex factors that make up someone’s sex are aligned. In cases where there is a dispute, however, there is no objective, reliable test to determine a persons sex/ gender.

OP posts:
ditalini · 01/08/2024 20:31

Participation in female sport:

Does this person have a Y chromosome?

If yes, is the sry gene present (to exclude Swyers)

If yes, is this person's body sensitive to testosterone (to exclude CAIS)

If yes, they should compete in the Open category, not the female category.

If there is a desire to include PAIS then there needs to be research to justify inclusion, not exclusion.

SilenceInside · 01/08/2024 20:31

@Tandora what happened to your "let's have a reasonable debate"! A face palm is hardly helpful. Explain why I'm wrong.

OpizpuHeuvHiyo · 01/08/2024 20:29

Tandora · 01/08/2024 19:11

What exactly is a “gender test”. Point me to the science that says there is an objective, valid and reliable method to test someone’s gender.

Quite right. They obviously mean a sex test but are using the word gender because they are too coy to use the word sex (which was normal usage up till about 10 years ago)

There is absolutely no way to verify someone's gender, or lack of gender. But sports are subdivided according to sex because there's absolutely no legitimate reason to subdivide according to gender.

Tandora · 01/08/2024 20:24

SilenceInside · 01/08/2024 20:22

"Therefore , logically, we also can’t say that testing someone’s karyotype provides a reliable answer for whether they are male or female. Nor does the presence of particular gametes. Etc, etc . This isn’t ideology; it is medicine and science!!!"

No, this is also illogical. The presence of a small number of complex cases doesn't invalidate the two binary sex categories, and doesn't mean you cannot identify the sex category of people without DSDs.

🤦🏼‍♀️

OP posts:
SilenceInside · 01/08/2024 20:22

"Therefore , logically, we also can’t say that testing someone’s karyotype provides a reliable answer for whether they are male or female. Nor does the presence of particular gametes. Etc, etc . This isn’t ideology; it is medicine and science!!!"

No, this is also illogical. The presence of a small number of complex cases doesn't invalidate the two binary sex categories, and doesn't mean you cannot identify the sex category of people without DSDs.

MissScarletInTheBallroom · 01/08/2024 20:21

RedToothBrush · 01/08/2024 20:20

It might be upsetting for them. Diddums.

I'd personally just like to ensure that women aren't seriously injured to prevent a male from getting upset.

Edited

Or even just losing out on the opportunities and victories that are rightly theirs, in non contact sports.

RedToothBrush · 01/08/2024 20:20

MissScarletInTheBallroom · 01/08/2024 20:16

And even where someone has a diagnosed DSD, the fact that they had no choice in the matter does not mean they should be allowed to compete in sport if their DSD gives them a competitive advantage over female athletes.

Not being able to compete in women's elite sport might be upsetting for them, but it is something they will have in common with most other people who have ever lived.

It might be upsetting for them. Diddums.

I'd personally just like to ensure that women aren't seriously injured to prevent a male from getting upset.

MissScarletInTheBallroom · 01/08/2024 20:16

SnakesAndArrows · 01/08/2024 20:10

Oh for goodness sake. Genetic testing indicates whether a person has no DSD and is XX female or XY male. This provides an answer in 99.9% or thereabouts cases.

For the people with DSDs, it is not always clear cut, but for all the specific examples in this thread the sex is male but the phenotype is female (Swyer’s and CAIS) or male (PAIS and 46-XY 5-ARD).

This has absolutely nothing whatsoever to do with trans people, who just think they are of the opposite sex.

And even where someone has a diagnosed DSD, the fact that they had no choice in the matter does not mean they should be allowed to compete in sport if their DSD gives them a competitive advantage over female athletes.

Not being able to compete in women's elite sport might be upsetting for them, but it is something they will have in common with most other people who have ever lived.

Ponderingwindow · 01/08/2024 20:15

PeriIsKickingMyButt · 01/08/2024 18:40

Thing is though, the only DSDs that actually confer an advantage are the ones that allow XY males who look a bit like females to compete against females. They have an advantage because they go through male puberty. CAIS people don't have the physicality of elite athletes. They tend to have supermodel proportions - very long and thin. It's very unlikely that any CAIS XY person would reach Olympic level in the first place.

Which is why if a CAIS XY individual did reach an elite competition status they would likely belong in the women’s category. As I said, DSD come in an amazing number of varieties. We cant just make a one size fits all policy.

Tandora · 01/08/2024 20:13

SilenceInside · 01/08/2024 20:08

This is illogical - on the one hand we can test for and identify all the various DSD including CAIS, which must be fairly straightforward to diagnose if you are presenting with a person who appears female but has XY chromosomes. Yet on the other hand it's impossible to identify what sex an individual is? The two can't both be true.

We can diagnose CAIS. We can say that someone who has CAIS has a male Karyotype and a female phenotype.

We cannot say that they are a “a man” or “male”; in fact the scientific and medical consensus is to generally assign female to individuals born with CAIS, they are recognised by the NHS as girls and women with CAIS, despite having a male karyotype. Therefore , logically, we also can’t say that testing someone’s karyotype provides a reliable answer for whether they are male or female. Nor does the presence of particular gametes. Etc, etc . This isn’t ideology; it is medicine and science!!!

OP posts:
MissScarletInTheBallroom · 01/08/2024 20:12

Tandora · 01/08/2024 20:08

There are scientific, objective tests which can be used to determine someone's sex, in the rare cases where there is any ambiguity in the matter.

please share the details of that test and elaborate on the scientific consensus surrounding its reliability. You can’t, because there is none .

If there is any ambiguity about someone's sex, doctors will perform a series of tests, including their genetic karyotype, visual inspection of their external genitalia, ultrasound to see their internal reproductive organs, and possibly also blood tests to measure their hormone levels. On the basis of these tests they will diagnose the person with a particular DSD. All DSDs are sex specific, for example if you have Klinefelter syndrome you are male.

Gender isn't relevant, or indeed real.

TheBanffie · 01/08/2024 20:12

Tandora · 01/08/2024 19:58

I don't see how anyone with XY and abnormal androgen production or sensitivity could 'not know' until they were an adult

well that just evidences your ignorance I’m afraid. its not uncommon.
yes people may wonder when they don’t get their period , at first they may just assume they are a late developer. Then they might worry that something else is amiss but there are many other explanations for this that are much more likely than having CAIS.
Many people get to adulthood before they have the types of investigations that eventually confirm CAIS - which are only possible with modern technologies anyway.

But they definitely know it's not normal - as you acknowledge. They may choose not to seek medical attention but to claim they had no idea that they might have a medical issue is simply untrue. Do any girls get to late teens with no periods and really think they are just a 'late developer' - particularly if competing in elite sport? Gymnasts with low BMI maybe, but not in athletics. People with XY DSDs are majorly over represented in women's sports hence detailed rules on their participation

worldathletics.org/download/download?filename=2ffb8b1a-59e3-4cea-bb0c-5af8b690d089.pdf&urlslug=C3.6A%20%E2%80%93%20Eligibility%20Regulations%20for%20the%20Female%20Classification%20%E2%80%93%20effective%2031%20March%202023t

SnakesAndArrows · 01/08/2024 20:10

Tandora · 01/08/2024 20:01

There is no such test for sex either

Oh for goodness sake. Genetic testing indicates whether a person has no DSD and is XX female or XY male. This provides an answer in 99.9% or thereabouts cases.

For the people with DSDs, it is not always clear cut, but for all the specific examples in this thread the sex is male but the phenotype is female (Swyer’s and CAIS) or male (PAIS and 46-XY 5-ARD).

This has absolutely nothing whatsoever to do with trans people, who just think they are of the opposite sex.

Tandora · 01/08/2024 20:08

MissScarletInTheBallroom · 01/08/2024 20:06

There are scientific, objective tests which can be used to determine someone's sex, in the rare cases where there is any ambiguity in the matter.

There is, as you correctly state, no scientific, objective test for determining someone's gender, because gender is not scientifically, objectively real.

There are scientific, objective tests which can be used to determine someone's sex, in the rare cases where there is any ambiguity in the matter.

please share the details of that test and elaborate on the scientific consensus surrounding its reliability. You can’t, because there is none .

OP posts:
SilenceInside · 01/08/2024 20:08

This is illogical - on the one hand we can test for and identify all the various DSD including CAIS, which must be fairly straightforward to diagnose if you are presenting with a person who appears female but has XY chromosomes. Yet on the other hand it's impossible to identify what sex an individual is? The two can't both be true.

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