Gonna write this text in english because it allows me to express my thoughts in a non-flowery way. As I created this blog, I did not intend to take something away from existing Klinefelter’s associations and groups in Germany and Austria. I just did not feel represented by them as I could not find evidence for similar awkward behavior and lack of communication skills. Next problem is that I have difficulties just to phone someone or go to a place with completely unknown people. That’s irony since XXY men generally tend to be shy and anxious. I prefer the possibility to write eachother in the first place, and then meet vis-à-vis. Therefore, I also prefer a blog or forum for mutual exchange. It let you also think about answers and does not stress so much like in a face-to-face conversation.
Another reason for this blog has been the general lack of any information about possible connections between 47,XXY and autism phenotype. Regarding advice for social communication skills and interaction in everday life, it does not really matter to me whether underlying mechanisms may differ in some parts of this condition. In a scientific way, it is important but I will address to it separately. It is also a separate question concerning testosterone replacement therapy. That is especially tricky given gender identity issues and replacement is not suited for everyone with 47, XXY genotype.
Main reason for me to explore in the broad field of autism spectrum is that thought patterns seem to be similar for at least some XXY men. There are many boys and some adults diagnosed with autism and then Klinefelter’s or vice-versa. Even if the doctor may correct his diagnosed from autism to Klinefelter’s, behavior obviously fits into autistic traits. Why not apply all information and guidebooks about autism to Klinefelter’s? I am going to translate some helpful information suited for children with XXY which I found on the British Klinefelter’s association. Moreover, I will keep you update about latest studies about Klinefelter’s and autism and additional information concerning behavioral issues. If you’re living fine with Klinefelter’s and don’t have any problems, just skip it. If you don’t have communication problems, be lucky and and skip it, too. Perhaps, testosterone replacement therapy will be sufficient then and no further help is necessary. Otherwise feel free to comment on this blog and share your experiences. The big number of undiagnosed XXY men tells me it is necessary to explain the public, to initiate information campaigns, to involve employers and (school) authorities. I’m definitely not the guy who is willing to just live with it. I’d like to inform and to share my knowledge.
On the other hand, I’m also confronted with clichés about autism, about misuse in newspapers and about prejudice by others. I tend to solidarize with other autists as I share similar thoughts, e.g. about awkward communication and behavior, special interests, be fixed to routines and and sensory overload (especially noise). However, in an environment where only clichés about autism dominate starting with savant abilities and ending up with people who cannot live alone,it appears difficult to disclose your condition. Again I want to stress out that not all men with XXY are included in the autistic spectrum but prevalence is much higher than in average population without chromosome disorders.
To end the sermon – I never stopped being a dedicated scientist seeking for answers and I will never stop asking questions but continue to question statements made decades ago.