I and others substitute ‘difference’ for ‘disorder’ in DSD. The clarification of what is covered under DSD I have no real issues with. I would see intersex as being about genitalia, gonads, phenotype, chromosomes, etc., that are different in early childhood from what is typical for males and females generally. DSD covers this and more – it covers what can give rise to these phenomena as well, even though they may not always give rise to these phenomena. This is why it is important not to equate the two – there can be people daignosed with DSD who are not intersex, but not the other way round. DSD cannot be an identity, intersex can, because some people do end up accepting and identifying with the way they are.
Girls will usually have normal female reproductive organs (ovaries, uterus, and fallopian tubes). They may also have the following changes:
- Abnormal menstrual periods
- Deep voice
- Early appearance of pubic and armpit hair
- Excessive hair growth and facial hair
- Failure to menstruate
- Genitals that look both male and female (ambiguous genitalia), often appearing more male than female”
The word ‘may’ describes some things, including masculination associated with intersex. But, the word is ‘may’, not will. The guidelines are clear that masculinising XX CAH is the ‘problem’, but it is the XX CAH that is the DSD. The ‘problem’ is the intersex characteristics that result from the DSD, and in treating the DSD, it is the intersex characteristics they are addressing.
Similarly for AIS:
Persons with incomplete AIS may have both male and female physical characteristics. Many have partial closing of the outer vaginal lips, an enlarged clitoris, and a short vagina. There may be:
- A vagina but no cervix or uterus
- Inguinal hernia with a testis that can be felt during a physical exam
- Normal female breast development
- Testes in the abdomen or other unusual places in the body
Again, ‘may’ qualifies this, and it is feminising XY Incomplete AIS that is the ‘problem’, but it is the XY Incomplete AIS that is the DSD. The ‘problem’ is the intersex characteristics that result from the DSD, and in treating the DSD, it is the intersex characteristics they are addressing.
This is quite an important thing to be clear about.
If you read the consensus statement, there is a sleight of hand going on there. They talk about most assigned girls with XX CAH growing up to identify as female – but they conclude from this that most people with visible masculinisation should be assigned female. Unless the two groups are the same (I don’t believe all XX CAH assigned girls are masculinised in this way, are they?), that conclusion is not warranted. I wonder why they make this distinction in the case of AIS – Complete & Incomplete, drawing separate conclusions for each group – and not for XX CAH? If they were to deal with people with AIS in the same way, then they would have to recommend either a male assignment for both types, or a female assignment. There is an incongruity. But it is because they are using DSD to refer to the underlying condition, and addressing outcomes of atypicality – XX masculinisation, XY feminisation and XY underdevelopment – which is what intersex is.
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