The doctor says: Don’t tell it your employer, you will loose your job!
The humangenetic counselors say to parents: Don’t tell it anyone, your child could be stigmatized as intersexual.
The german Klinefelter association says: Don’t tell it anyone, you could be stigmatized as intersexual.
So, why should you not talk about it? Right, because there is a lot of prejudice. Prejudice like …
- among physicians … when you mention Klinefelter’s syndrome and they answer: Aren’t these the people with thick necks who are mentally retarded?“ Or when a gynecologist said to a young mother: „Abort the child, our society prefers healthy childs.„
- among 99 % of the general population who got never in touch with Klinefelter’s, at the most in biology in school where infertility and lack of testosterone are the main topic. I assume similar experiences during medical school when rare conditions are hardly mentioned. Noteworthy to say that Klinefelter’s is solely to be seen as rare due to the large number of undiagnosed men. If 70 oder 80 % of the XXY populuation was diagnosed, research interest and lobbyism would be greater.
- As I went to the genetic counselor, they did not tell me anything about psychological effects of Klinefelter’s syndrome. The german Klinefelter association rejects statements going beyond shyness, passiveness and sensibility (which are addressed to the lack of testosterone) and subsequently say it has nothing to to with KS.
- The austrian support-group also refuses a connection of Klinefelter with enhanced sensitivity to sensory stimuli while detailed talks are given about this topic by AXYS, the american association for X and Y chromosome disorders.
Nobody is able to explain so far how kids with hardly measureable hormone values between mini-puberty and later puberty can show a lack of testosterone. Even if there is a lack of testosterone before birth or with neonates, the hormone unbalance is responsible for essential influence on the brain development in this state of a young life. It may even modify specific brain regions that they resemble the brains of ADHD-brains – according to studies – as well as from other conditions. Given a prenatale brain development, additional testosterone can’t reverse it just so simple, maybe in some parts of the brain but not in all of them.
My personal opinion is we need to destigmatize XXY and Klinefelter’s syndrome step by step:
Step 1: Everyone with XXY should be invited to an open discussion, even those who do not fit into the scheme of a Klinefelter prototype, like those who are diagnosed psychiatrically or define themsevels as intersex. Open exchange is the precondition not be excluded even among XXY which is a double penalty when you feel as a social outcast in everydaylife.
Step 2: Physicians, specialists and support group heads have to admit that the second X chromosome may also play a role as the lack of testosterone is caused by the second X. Open discussion about causes should be possible, at best in exchange with other organisations, e.g. AXYS or Klinefelter Netherlands which possess much more information about it.
Step 3: It has also to be admitted that depressions with XXY men are not only the result of infertility and lack of testosterone but may also be associated with feeling the otherness.
Step 4: Elucidating intersexuality. There are different definitions of intersexuality – not every intersex is a hybrid/hermaphrodite. If prevalence for being intersex among XXY was not actually enhanced compared with the total population, there would be not a reason to refuse the participitation at studies like „dsd life study“. Even if the study turns out many XXY were intersex, it does not mean they should be excluded from discussions about XXY.
Step 5: Clarifying conditions with different (sensory) perception (to call it neutrally and not only pathologically), including autism, ADD/ADHD and schizophrenia. The identity of these conditions often bears creative people having strengths and weaknesses like anyone else. Keywords like trending diagnosis and vaccination damage are unserious and imply it is a disease, not different perception. [though I’d like to point out that severe forms of these conditions may seriously impair one’s daily life] Weaknesses, health impairments can be treated, therapied or one can just try to live with it but strengths must be discovered and encouraged, they do not need a cure. They belong to one’s identity, here: to chromosome variation XXY.
Step 6: Disclosing might be helpful when the condition causes difficulties to communicate and interact. If you are not impaired, you may not see a reason to talk about it. If you feel enhanced mental stress and if you’re struggling with your social environment, however, you should feel accepted and not rejected in local support groups and associations. You should be able to to talk about any topic without being censored and you should ask questions without being slapped with „That has nothing to do with KS“
The self-proclaimed guards of the truth, however, are not open to findings in non-german language. Not all of these findings can be discarded with the argument, the pharmaceutical companies manipulate all studies in the USA. It is already sufficient to look at the raw data instead of conclusions. In addition to that, I mostly use references originating from other countries like Netherlands, Denmark or Sweden. With respect to the inflation of psychiatric diagnoses in the USA (I’ll write a separate blog entry to that topic), an ADHD or autism diagnosis should not be necessarily stated if not all criteria are fulfilled. However, the present symptomes could be treated anyway – only in serious cases with drugs – when therapy strategies with ADHD or autism are considered.
1. The child suffers from sensory overloads. XXY children often need more time to process verbal information due to impaired cognitive abilities and distraction by sensory stimuli. Short-term memory (working memory) may play a role, too. Approach: Give enough time, don’t press the child, practice emotional awareness, don’t tell verbal information when too much sensory information is present (e.g. when the television or radio is running in the background)
2. The child has difficulties to manage tasks in an appropiate time. Approach: Use „if-then-lists“ instead of „to-do-lists“. If I tidy up my room, I may play with the children. If I do my homework, a friend may visit us.
Such targeted therapy appreaches might work even without a diagnosis, but current state is that you need an additional diagnosis to Klinefelter’s syndrome because ….
- Klinefelter’s syndrome, as it is defined by physicians and in support groups, does not cover all observed behaviorial traits.
- the social environment does not know how to deal with your „Coming Out“ of Klinefelter’s syndrome, or they assume testosterone substitution settles the matter and it’s only your problem and one does not have to change his behavior (e.g. clear instructions without the need to read between the lines, better written than verbal information, consider sensory overload)
- only an additional diagnose is able to give otherness a name
Main problem is, see step 5, that additional psychiatric diagnoses are burdened with lots of prejudice. Now I know quite a few diagnosed people and I’m far away to think in stereotypes about them. Yet, you can’t expect this from the majority in your everydaylife but you can push them into the right direction, by good references and balanced articles, and unmasking aged information. It is also important to emphasize the worst case must not happen. Many bloggers in the blogroll (see the right column next to the article) explain how ADHD and autism look like, much better than Wikipedia or a textbook.
At the end, the concerned person is the best contact because he knows what a diagnosis means for himself. In any case, you should consider the individuality of each person.