If You Could See What I See

Support has always been thin on the ground, for XXY’s unwilling or unable to tolerate the standard treatment of care Testosterone, which according to a parent’s golden rulebook of what is permissible under organisational guidelines one is only entitled to support if they identify as male and take their medicine, it doesn’t matter if you Cross-dress or that you are Gay,  only that you administer Testosterone, identify as male and keep your mouth shut, unless of course you are asked a direct question in which case it was alright to answer so long as you not judgemental and refrain from using words such as “subjected” doing so results in a public flogging by administrators and those who believe themselves to be one. It seems necessary to let others know this particular line of questioning  is not welcome in forums which are made up of parents  with little kids who under the watchful gaze from a couple of adult male XXY’s, go about their business like little ants building a nest whilst warding off invaders namely those who would dare question a parents directive. Only parents and XXY confidants make it to the actual nest and even then, it’s usually only one or two XXY males, the others mostly assume they are included but really, they are not. Such inclusion is purely tokenistic and saves parents from having to deal with Adult XXY’s whose needs are not the same as their infant children. This loyalty is rewarded with a title of Adult Program Co-ordinator because it saves parents the bother of having to deal with adults whose line of questioning and interaction they so often find alarming, This ‘authoritative’ position exists only in title as the actual coordinating is carried out by parents. So basically XXY ‘support is not really being supportive at all and would be better badged as a Parents Support anything more is just a farce or worse.

Those of you reading here and are XXY or affiliated will know we are referring to the Association of X & Y Syndromes or AXYS (pronounced AXIS) as they like to be called who are experts at excluding those who don’t meet their criteria. They also intentionally conflate Intersex with Gender for the purpose of ignoring the aforementioned ‘those who are unable to tolerate Testosterone or who identify their gender as something other than male.and all for good reason. Through a well-rewarded recruitment subsidiary, they are responsible for supplying the subject matter (children) to ‘specialised’ doctors and research facilities where infants as young as eight weeks are subjected to Androgens in those early stages of life. Limited public disclosure tells us the treatment is for Micro-Phallus (but who, with the exception of XX Genotypical females doesn’t have a micropenis at that age ?) and also to offset cognitive issues such as ADHD and/or Autism, which seems rather odd when you consider populations other than XXY not in need exogenous sex defining hormones also have these issues.

Evidence on the impact of testosterone treatment on cognitive and social functions comes from two quite old observational studies both reporting a positive effect on learning, concentration, mood and social function, but no controlled trials exist in adolescent boys with KS. In contrast to these studies in boys and adolescent with KS, existing non-randomized, cross-sectional studies of boys and adults with KS have found no effect of testosterone treatment nor testosterone concentration on cognitive, social and motor functions, except a single study reporting a positive effect of testosterone treatment on verbal fluency” 

Of course this is just a pretence disguising the real intent of virilisation where the XXY person will develop  masculine features which Geneticists and Paediatricians insist are necessary if the child is to live a happy and meaningful life and just so happens to sync with a parents fear of how their child will grow up to be different, which will happen anyhow given they are not XY males and how sometimes they come to reject exogenous testosterone because it was not something by which they were a party to, meaning as infants and young children they had no say in what was expected of them.

“Many parents turn to medicine to make sense of their baby’s ‘dis’-order, find clues about the ‘true’ sex and ultimately ‘fix’ their child (Gough et al., 2008; Zeiler and Wickstrom, 2009). In this way, they contribute to the medicalisation of (XXY)  intersex by demanding medical solutions to socially uncomfortable situations. At the same time, scholars observe that it is reasonable for parents to be alarmed, and to accept, rather than challenge, prevailing dimorphic and essentialist understandings of sex, when medical professionals present them with a socio-medical emergency (Davis and Murphy, 2013). And while decisions about medical interventions are ultimately left up to the parents, they remain heavily influenced by a medical professional”

But, you would never know this if you attended an AXYS conference where parents come armed to the teeth with Facebook contacts and information relating to doctors and treatments for their newborn or adolescent children, conversations/ questions of early androgen interventions are not too unlike those one would have if buying a new commodity except in this instance we are talking of children without a voice who are then subjected to a parent and pathological idea of what it means to be a human.

“As an endocrinologist, I receive many inquiries and requests for androgen “therapy” to substitute for the missing “mini-puberty”. There is a lot of lore about this spread mostly through the internet, and many parents strongly desire this therapy in hopes of ‘normalizing’ development, especially if their child’s pediatrician will not administer it. There remains controversy whether “mini-puberty” occurs or is attenuated in boys with Klinefelter Syndrome (47XXY) compared to 46XY infants. The data simply currently does not exist concerning the effects of the “mini-puberty” on physical or cognitive development in typical 46,XY males, or whether there is any benefit in supplementing testosterone in infants with KS. This question begs double-blind, controlled trials. A second point is that the penile length in boys with KS is often less than in 46, XY boys, but not in the range of micro-penis. Borrowing from experience with boys with the latter, it is likely safe to administer testosterone enanthate or cypionate, 25 mg per dose for 3 doses given one month apart, in an attempt to increase penile length. The penis will sometimes grow and there are seemingly few side effects, including transient (but minimal) pubic hair and an increased frequency of erections

Outside of the first 4-6 months of life, there does not appear a great need for androgen therapy during childhood, for the “mini-puberty” has been completed and adolescent development is in the future. Whether androgen deficiency exists at this time (and during mini-puberty) remains controversial and unanswered”

And therein exists the loophole by which parents are queuing up to have their eight to twelve-week-old infants administered the 3 X 25mg Testosterone doses, the administration is in the form of an appetising wafer which the child gobbles down whilst the parent (usually the mother) is chatting with the doctor. Doctors frame the language around this as “Mini Puberty” and “Windows” of doing no harm which in turn translates to a parent’s language of what harm can it do? Unfortunately, such questions are never answered by those of us who would know the answer because our voices are erased from the conversation and in that place other parents usually those who are running the show are very quick to offer reassurances that early androgen interventions are the best way forward, and so the madness continues unabated…………..

 

One thought on “If You Could See What I See

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s