Communication matters

In an earlier blog entry I’ve written about my different feelings and experiences with dislosure.

The probably worst case is when you feel you’re different and you’re having deficits but you can’t explain them and lack support or understanding in your surroundings. I was thrown into a situation where I needed help but didn’t get it. If you don’t have a job with strong physical challenges, you won’t probably notice the effects of low testosterone values, at least not in the first place. For sure, I noticed the lack of concentration and energy and I especially felt tired all the time. The testosterone supplement therapy reduced the tiredness significantly. While I had serious difficulties to maintain concentration throughout an early shift, I succeeded much better even with few hours of sleep after receiving extra testosterone. For the sake of better performance at work, I decided to disclose my diagnosis.

The greatest difficulty in disclosing “Klinefelter syndrome“ is that there is not much fundamental information about effects, variety of the spectrum as well as even common positive outcome. If you look for something like that, you have to forget about your native language (german) and look for reasonable information outside of Germany and Austria. Most people don’t want to switch the language, though, and prefer to read outdated german information, without knowing it is outdated. So for the current state of information, it is not recommendable to disclose Klinefelter syndrome in german-speaking countries, except for physical work where a lack of muscle mass as well as the enhanced risk of breaking bones (osteopenia, osteoporosis) may play a crucial role.

The next thing is all about the cognitive and emotional issues linked to XXY condition. There is even far less known than about physical issues, i.e., disclosing Klinefelter syndrom says absolutely nothing about difficulties in communication and interaction as well as with changes of routines. It is of greatest importance to add reasonable information and references when you decide to disclose to your colleague, supervisor or boss. Again, from a current point of view, most of these references will be limited to english-spoken guidebooks.

Rudy Simone has written an incredibly important book about how to communicate between employee and employer, and although it mainly addresses to Asperger’s syndrome, some advice can also be used for being XXY because there is strong overlap of cognitive and emotional symptomes.

To sum up: communication matters.

It is generally important for every employee but even more important for those with communication difficulties. It is helpful to agree on a preferred way to communicate, like the written form instead of a phone call or face-to-face meeting and especially helps those who need more time to processing incoming (auditory) information and to respond appropriately. It is helpful to have clear structures, reliable contact persons and to announce changes far enough in advance in oder to avoid stress and inappropriate, hasty reactions. In such an environment, even an employee with communication issues is favoured to realize its potential. Mutual exchange is necessary to improve situation, and curiousity. It doesn’t help to be well prepared and to bring with a lot of illuminating information when the respective questions are not posed. Questions are good! The more questions, the more answers. Moreover, a lot of questions may introduce a clear structure of an interview where it is easier to look into the situation instead of just telling about yourself and then missing import things. Ask questions! I don’t bite!

Experience with disclosure – a mixed blessing

As written by Mamma Bluette, I don’t think it’s necessary to disclose our special physical characteristics…. That’s pure personal stuff and should be left as such.  One of the greatest difficulties for most of us XXY people is: Nobody ever heared of it…. except for some few lines during biology in school or when chromosome aneuploidies were brought up during medical school. Even if you tell them about XXY or Klinefelter, there isn’t any serious source to rely on…

  • it’s difficult explaining something when only few studies are known, and much fewer about XXY adults.
  • the Internet is full of shit about Klinefelter, much outdated and misleading information.
  • the people to whom you’re disclosing are not interested or don’t want to deal with it after your disclosure, because they are overstrained or don’t know how to react on you being so open
  • disclosure might be interpreted as an excuse (instead of a reason)

If I had known earlier, I would have probably chosen other words than in my very first disclosure. What appeared relatively reasonable for me, has been confusing for the people to whom I disclosed. Maybe the first mistake…. I thought most of my problems originated from the lack of testosterone and the hormone replacement therapy would cure it.

I didn’t expect Klinefelter’s syndrome to be one of MANY possible sideeffects of having an extra X chromosome. I didn’t expect to be autistic and that XXY strongly favours a diagnosis within the autistic spectrum (varying from high-functional, Asperger’s to not otherwise specified, PDD-NOS). Though it’s called mild autism, I don’t feel anything mild in it. It’s not really helpful to compare my degree of autism with other autistics who look clearly more autistic from the outside. I also know that my autism is different from idiopathic autism, i.e. when the cause is still unknown. XXY autism tends to be less pronounced with repetitive behavior and stereotypes but also more towards anxiety disorders. XXY generally tend to reveal a more female-like (autistic) phenotype, which sounds reasonable given the additional X chromosome. But that’s only  my personal interpretation of my behavior and anecdotal evidence of other XXY.

What it makes really difficult for me …. I don’t fit in… neither in typical males, typical autistics (according to a smattering of knowledge coming from media reports and cliché-driving movies) nor in typical XXY. So whenever I’m compared with autistic people, I’m different. Whenever I’m compared with XXY people, I’m different. It seems as if I have parts of each condition in me but do not fulfill all criteria… the least to the outside. Given the case, a XXY individum is also autistic, it’s even more difficult to disclose since much less is known about XXY and we are often reduced to our physical appearances and testosterone deficits.

The reason for which I disclosed has been strong psychological strain. I couldn’t think about right or wrong in that period of my life when everything seemed to crash. I disclosed having XXY/Klinefelter and tried to explain my autistic behavior (without calling it so). I failed, very likely misunderstood as looking for an excuse. Though I tried hard to understand what is actually going on with me…. it’s not so simple… I have to rethink the entire past which is a still ongoing process.

One of the most prominent arguments against disclosure: If you disclose, you will be teased or even dismissed.

Yes, these cases occurred. However, many people with XXY/autism experience it even without disclosure. It won’t make any difference. I decided to be open about it…. because there is no other way to remove clichés, and I’ll have difficulties anyway… even knowing the reason doesn’t mean you can switch off your problems.

My goal is that people with Klinefelter’s syndrome are received as people first. People with extra X also allowing for strengths and talents.