thoughts and ideas about XXY

some thoughts ….

– a survey of XXY about being left-handed or right-handed

( I recently found out with help of an autism specialist that I’m actually left-handed explaining a lot of difficulties with direction of rotation since childhood)

– a survey of XXY about enhanced sensory perception (yes/no, and which senses are affected most often: hearing, visuals, taste, tactile, smell)

(there are communalities between small-scale polls in autism forums and the british XXY forum, both resulting in enhanced sensory issues with hearing and visuals)

if ADD/ADHD are rather symptoms than syndroms (about 50 % of people with autism also have ADHD, about 60 % of people with XXY have also ADHD), and mainly the result of different sensory perception…. it would mean that XXY is one of many possible conditions to obtain a different perception in general.

The idea of, e.g. self-stimulating behavior or special interests as a strategy to manage too much incoming information, social stress, sensory overload, mental overload, etc… is relatively new (but included in the latest DMS-V for diagnosing autism spectrum conditions). If both behavior (stimming and special interests) is less defined, people have to look for other „bad“ copying strategies, like frequent meltdowns, attention deficits, hyperactivity, etc…

(in the few studies about autistic symptomes in XXY, XXY reveal less special interests, repetition behavior as non-XXY autistic people, which could mean that XXY are less able to self-regulate themselves)

Attending symptoms like bad time management, organisation, planning, etc… are shared by all conditions (XXY, ADHD, autism) as a result of executive dysfunctions (something’s working wrong in the frontal lobes).

For a long time, in Germany even now, nobody thought of communalities between these conditions because all symptoms were related to the lack of testosterone. This is another fact I’m quite curious about because hormone imbalances are also reported in autism (and gender dysphoria seems to be more frequent in autism than in the general population), and some autistic women reported too high testosterone values.

I guess the discussion about these relations often stutters because of the usage of the term „autism“: Autism is highly negatively connotated. Nobody wants to be referred to. Parents are often shocked even hearing about this possibility. I approach this topic rather from bottom-up thinking. I gather as much information as possible trying to puzzle it together. I follow the principle of neurodiversity, i.e., the different perception doesn’t express a disorder but a difference. Maybe, this approach gets lost in this strong desire of having categories and stamps, coming with DSM-V and diagnosis (good read: Frances, Allen (2013). Saving Normal: An Insider’s Revolt Against Out-of-Control Psychiatric Diagnosis, DSM-5).

My intention is not to put XXY in additional categories but to destigmatize the existing categories.

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Difference diagnosis and effect on support

I don’t want to spread clichés, so please correct me if I’m wrong. However, if I look at the institutionalized structures, support groups and further advice for people with disabilites in general, also referring to the Disability Act guranteeing the rights of disabled people, there are much better conditions in the United States than in Europe. In Europe, the fundamental rights are presented in the constitution law and in the declaration of human rights. There is also a UN convention concerning people with disabilities which was signed by the Austrian Government in 2008. Anyway, Europe is obliged to treat these people in a similar way like in the USA:

Believe in your strengths and doubt your weaknesses, otherwise they will win.

If you invest in strengths, the weaknesses can be overcome. It’s benefit thinking, not deficit thinking. In Europe, especially in Austria (not to speak from countries in eastern Europe …), people with disabilities are seen as disability instead of benefitting from their strengths. Companies prefer buying themselves free instead of employing a person with a disability. There is too much prejudice and probably thinking in terms of „how much does it cost to modify the working place“ or taking special care of that person. They are seen as ballast and talents and special interests could be easily overlooked.

To my current knowledge, picture of autism in the USA is quite different from UK, Germany or Austria, except for some positive exceptions like companies who employ especially autists to benefit from their computer abilities or general ability to focus on their special interest in a very rigide way; which could be seen also critical as stereotypic picture of autists as computer nerds could be reinforced. Otherwise, numbers are disastrous concerning unemployment. Probably 80 % of Germans within the autistic spectrum are without job, about 40 % for a longer time, in UK only 15 % have a full-time job, some references in Austria even say nearly 100 % are unemployed. What a waste of talent!

As an autist you could have a great knowledge in your special interest, enhanced perception of details which could be used for detecting mistakes and many of them are also visual thinkers or good in expressing themselves in a written form. I can’t list all the advantages people in autism spectrum have – there are better resources than me, e.g. Temple Grandin, Rudy Simone or numberous blogs from autists all over the world who show you their ability. Tony Attwood, e.g., made a list of positive traits and characteristics of autism.

Main problem is however that talent and knowledge could be overwhelming but bad communication skills tend to be present in the foreground and overlap the better skills. And that’s also true for some Klinefelter’s though unemployment rate appears to be not such high as with idiopathic autists. However, irrespective of the underlying mechanisms and resulting diagnosis – if you have difficulties with social communication and interaction, people will likely underestimate your potential.

I really like Christopher Nolans ‚Batman trilogy‘, I could watch it every week, and I especially like the first part.

But it’s not who you are underneath, it’s what you do that defines you.

Though I’m inclined to agree with that statement, it’s appears in another light if you look at in the perspective of someone with impaired social skills. It’s his behaviour surprising, confusing the employer and will likely turn him into rejecting the respective person.  He could have good skills in his area of expertise but he will be unable to sell well in front of colleagues and bosses.

Here is the point where the diagnosis fits in, now with focus on Klinefelter’s syndrome and especially these ones fulfilling many but probably not all autism criteria. The child, adolescent or adult within Klinefelter’s spectrum  could have nearly the same difficulties in social communication and interaction like the child, adolescent or adult diagnosed with autism spectrum condition. However, there is not any handbook or advice for Klinefelter’s children and as long as they don’t let them be diagnosed with autism as well, they will not obtain respective support.

For an adult with Klinefelter’s syndrome revealing the same symptomes like Asperger’s syndrome, it plays a subdominant role whether childhood fits into the clinical picture of Asperger’s. It’s more an academical question if classic autistic traits could be observed. The adult wants to know how to manage current life, in the 40s or 50s. Most of the research deals with children and adolescents, not with adults, unfortunately, and there is little known about the effects of testosterone therapy on adults starting in adulthood, with respect to the behaviour. Most of the testosterone benefits do not affect the diagnose criteria for autism though improving relationship to peers was observed in studies. Bad communication skills could probably endure the therapy and maybe still present after years of testosterone substitution. Moreover, sensory integration disorder is also present with Klinefelter’s and could affect the working environment in a class room or office, too.

So there are two ways to obtain support for men with Klinefelter’s syndrome.

  • Either Klinefelter’s are generally tested for autism (and ADHD though the majority will obtain ADD, if present) and further strategy is to follow the approach for autists …
  • or we need just similar structures like in USA, with detailed descriptions of behavioral and sensory issues which are probably not related to testosterone deficit, and subsequent guidelines how to make things easier for concerned persons in school, at university, on the job and in everydaylife.

As long as we do not have these structures, there will be frustrated some, not all men with Klinefelter’s who suffer from many similar difficulties like people with autism but they just have the „wrong“ name of their diagnosis and will be misunderstood or even ignored.

People with autism and Klinefelter’s syndrome share two of the main criteria for autism: They tend to avoid eye contact and suffer from enhanced sensitivity to sounds, movements or touch, but could also benefit from their enhanced detail perception and ability to focus on their special interest.

Of course, there are differences, e.g. in brain architecture, but as already mentioned, from a current point of view, it only plays an academical role and is not an excluding criteria for autism, as long as it is not proven that testosterone could cure all autistic-like traits in Klinefelter’s spectrum.

Just to sum up a bit:

I strongly recommend to believe in your strengths. It does not make sense to solely focus on your weakness.

Good communication skills are important but should not distract from a person’s talent. For communication, you always need two persons. Use your language as precise as possible.  Don’t be upset if opinions are expressed in a direct and honest way. Smalltalk and wrapping criticism in a smooth way are probably not our best skills.

We need a better understanding of what Klinefelter’s syndrome comprises with respect to sensory and behavioural effects which are not covered by testosterone therapy itself. As a result, we could develop similar structures and guaranteed rights for Klinefelter men, too.

Long way to go but avoiding a long rocky path will continue status quo which is – in my opinion – not satisfying. And aside from Klinefelter’s syndrome, prejudice is also given for ADHD and autism. We are all in the same boat.

Stay tuned and spread the word !

Knowledge is Strength/Wissen ist Macht

Der Weg ist noch lang, um zu enthüllen, was sich unter meiner Persönlichkeit verbirgt. Zerstreuung hat für mich eine andere Bedeutung als für Gleichaltrige. Erholung kann sowohl Entspannung, Nichtstun oder sich zerstreuen sein. Für mich ist Zerstreuung kreativ sein. Ich liebe es, Wanderpläne zu schmieden, zu fotografieren oder einfach herumzugehen und Streetfotos zu machen. Der entspannende Teil danach ist die Bearbeitung und Verbesserung der Bilder. Ich kann das mehrere Stunden ohne Unterbrechung machen. Wanderberichte schreiben ist ebenso eine Möglichkeit abzuschalten. Ein gemeinsamer Schnittpunkt nahezu all meiner Freizeitinteressen ist die Forschung. Nicht nur Wandern, Landschaften oder Streetfotografie, sondern auch Architektur und ein Blog wie dieser. Ich liebe es, Muster zu identifizieren, historische Daten herauszusuchen, Geschichte selbst zu lesen und Verbindungen zu verstehen. Der Grund für diesen Blog war, dass ich nicht alle Aspekte meiner Persönlichkeit im sogenannten Klinefelter-Syndrom wiederfinden kann, das – wie ich heute glaube – nur die körperlichen Eigenschaften beschreibt, während Komorbiditäten die resultierende Persönlichkeit erklären, und eben nicht nur Defizite, sondern auch Stärken.

Forschen und Informationen sammeln, die eine große Bandbreite abdecken, ist der entspannende Teil meiner Freizeitaktivitäten. Befriedigung kommt auf, wenn ich in der Lage bin, diese Informationen in verständliche Artikel zu komprimieren. Ich denke, da ist nichts falsches daran, wenn sich jemand dadurch entspannt, in der Welt der Wissenschaft und Forschung versunken zu sein. Es bedeutet lediglich, seine Schwächen und Stärken in eine angemessenere Beziehung zueinander zu setzen, was nicht mir einem selbst, sondern auch anderen weiterhilft.

Meine neueste Forschung widmete sich der Reizüberflutung bei XXY-Männern, wo ich versucht habe, mehr über Reizfilterschwäche (Überreizung durch Informationen, unabhängig davon, ob es sich um sensorische Reize oder um verbale/schriftliche Informationen handelt) herauszufinden.

Mich interessiert es sehr, ob es mehr XXY-diagnostizierte Männer gibt, die unter Reizüberflutung leiden, z.B. durch Hintergrundlärm, Verkehrslärm, Menschengruppen und einem Gespräch folgen, wenn Hintergrundlärm vorhanden ist. Habt ihr auch weitere sensorische Reizüberflutungen, etwa durch Hitze/Kälte, Schmerz, Licht, Stoff, etc?

Ich freue mich auf Eure Kommentare!

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It’s a long way to go. To reveal the complexity beneath my personality. Distraction has a different meaning for me compared with peers. Recreation could be the result of relaxing, doing just nothing or just for distraction. For me, distraction is creativity. I love making hiking plans, I love photography, just walking around and shooting street photos. The relaxing part thereafter is editing and improving pictures. I am able to edit several hours in a row. Writing hiking reports is recreative, too. One sharing part of nearly all of my freetime interests is research. Not only with hiking, landscape or street photography but also with architecture and a blog like this one. I just like to look for patterns, historical dates, history itself and understand connections. The reason for this blog is I could not discover all aspects of my personality in so-called Klinefelter’s syndrom which – I believe now – only describes a physical condition while comorbidities might explain the subsequent personality, not only deficits but also strengths.

Research and collecting information covering a wide range of topics is the recreative part of my spare-time activity. Satisfaction arises when I am able to condense that information into comprehensible articles.  I think there is nothing wrong when someone’s recreation expresses  as being immersed in the world of science and research. It’s just the power to put deficits and strengths in a more appropiate relationship eventually help for himself and others.

My latest research addressed to sensory overload issues with XXY males, where I tried to find answers to the question of reduced sensory gating (overload of incoming information irrespective of sensorial impulses or verbal/written information). I would be glad to know if there are more XXY-diagnosed men experiencing sensory overload like difficulties with background noise, traffic noise, groups of people and listening while there is background noise.
Do further sensory impulses exist like sensitivity to temperature, pain, light, textures, etc.?

Feel free to comment below this article!