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.

Lack of Impulse Control: When Communication is Overdosed.

Recently, I published a blog text about online dependence leading to a greater dispute about the question whether online communication could be considered as addictive behavior.

I understand the intention of people with autism to refuse their special interests and excessive online communication to be considered as addictive behavior. As I went into behavorial therapy a few years ago, I accidently happened to meet a specialist for prevention of addiction – not online but drugs in general. Addictive behavior is divided into substance (alcohol, drugs) and non-substance (buying, betting, sports, internet). It is caused by loosing impulse control and leads to self-damaging behavior without recognizing it.

As I tapped into the trap of addictive behavior, I was far away from knowing about my neurologic conditions. Executive dysfunctions are core features of autism and 47,XXY. My former therapist didn’t know about my conditions, either, and did consider my online addictive behavior as main reason for difficulties in everydaylife. He tried to shift my focus to (offline) everydaylife but I didn’t succeed because of my verbal communication difficulties.

I tried a cold turkey because I thought my internet behavior is the main reason. Ok, ten years ago, it would have been possible to stay out of the virtual world for a certain period. Today, however, in 2015, situation has changed. Moreover, the majority of my special interests is only possible with aid of internet tools, like weather charts, radar, weather data in general and a lot of other things, like writing blogs, communicating with journalists, etc. A cold turkey would have destroyed me in the long term since I had difficulties to manage my everydaylife.

Therefore I’d like to emphasize it for everyone of you who wants to slam this in my face „I’m not addicted, I need it to survive!!“: A therapist without any knowledge about the cause of „online addictive behavior“ is capable of producing serious damage to a not-recognized autist or XXY forcing him to a cold turkey! Psychologists specialised in addictive behavior should be aware of internet addictive behavior as a symptome, as it is also written in Allen Frances “Saving Normal: An Insider’s Revolt Against Out-of-Control Psychiatric Diagnosis, DSM-5, Big Pharma, and the Medicalization of Ordinary Life

I didn’t make official definitions. We have to deal with offical definitions also for autism which are probably insulting for us, like special interests seen as a symptom of a disability as well as lack of eye contact which is common in other cultures in the world. So please don’t blame me for using the the ICD-10 definition for addictive behavior:

  1. A strong wish or kind of obsession to consume substance causing addiction.
  2. Reduced ability to control start, termination and quantity of the substance.
  3. Physical acute delirium when consumption is finished or reduced.
  4. Proof of tolerance: To obtain the effect of originally lower amounts of the substance, increasingly higher amounts are necessary.
  5. Progressing negligence of other interests and pleasure in favour of the consumption of the addictive drug and/or enhanced expenditure of time to acquire and consume the substance or to recover from the effects.
  6. Persistent drug abuse despite the evidence of clearly damaging consequences (physical, psychological and social)

Source: http://www.suchtmr.de/index.php?id=140

The factors 1-5 seem to be typical for special interests in autism spectrum conditions. Moreover, we feel much more relaxed communicating in a written form instead of a phone call or a face-to-face meeting. I don’t want to list up all advantages. Most of you know them well, otherwise you wouldn’t read my blog.

Despite having great advantages of using internet excessively, I had some serious negative impact I can’t blend out.

In 2003, I missed the famous aurora in Central Europe because I preferred to chat instead of going onto the balcony.
In 2005, I missed a tornado because I preferred to chat in ICQ and write in a weather forum instead of going outdoor.
I cancelled a dinner with a friend he made for me with high effords because I preferred to stay at home and chat. I rapidly lost concentration and focus on reading scientific books and papers well as learning for exams if a computer stood nearby in the same room. I also felt uncomfortable when I couldn’t go online for a longer time than a few hours.

I almost fucked up my studies because I lost the balance of being online and offline (number 5)

Being excessively online (or using a computer in general) had also serious physical consequences: I ate too much fast food because cooking prevented me from staying online. I lacked physical training and was rapidly exhausted in rare occasions like hiking tours. As a result of sitting for hours and days, I tended to have frequent gastrointestinal troubles and constipation. Physical and sleep hygiene has been suffering, too. I couldn’t manage my everydaylife anymore (number 6)

I was asked whether the inability to manage everydaylife is the cause or effect of being online.

In the case of people with social communication difficulties, it might be both of it. On the one hand, social communication and chances to manage everydaylife with internet tools, is a blessing for us. We need it to express our feelings and wishes, opinion and existence. We stay in persistent contact with people we like and people who help us. We will likely have a much harder time without it, especially if the social environment isn’t holding but detrimental. All of us benefitting from this opportunity shouldn’t be blamed as addictive or even pathologic.

I guess… when it comes to therapy and addictive behavior is mentioned either by your parents, friends or therapist, addictive behavior may arise as a primary diagnosis. The reason to write this blog text is, to look behind the obvious symptomes and to look for the true reasons. As ADD, ADHD, autism, diabetes, osteoporosis, etc… may all result from having 47,XXY or related genetic conditions, some primary diagnoses turn out to be wrong (the genetic condition is the primary diagnosis, and autism the result of it).

The term for your behavior may be still addictive behavior, it doesn’t matter for officials if you like it or not.

So why changing behavior which seems to help us?

There are at least some exceptions. There is no black and  white in any behavior.

Whether you’re autistic or not, everyone needs sufficient sleep, good food and physical as well as mental health. It’s important to retain control. Control your feelings when you’re at work (not having emotional outbursts in front of your boss), control spending money if you’re strapped, control to handle your daily work.

I experienced to loose control of nearly any important piece of my life.

To balance online and offline life (our body lives offline and we will die offline, children are born offline), I prefer to do hiking tours when I’m disconnected from the internet. In the nature I can relax, get fresh air, free thinking and develope ideas. I can forget things at least for a short time stressing me. Keeping my sleep hygiene under control means I need to go in bed early enough if I have an appointment or work to do the next day.

Depending on the amount of support in everydaylife, some of us need a job to survive. It’s nice to have special interests like video games or writing hundreds of blog entries. Are they sufficient to earn money with it? Some people with autism are working as game developers, others are writing books or drawing cartoons. Even someone who has a spleen to identify train types may work someday at a railway company. I was fascinated by weather and studied meteorology.

In my opinion, it’s even possible as a person with autism or genetically determined difficulties with impulse control, not to use autism as an excuse to loose control but to look for possibilities to stay fit for everydaylife. Unfortunately, we don’t live in a world where everybody is taking care of your difficulties. Unfortunately, there are still situations where we need these offline skills like having a phone call with officials, going shopping, having a job interview, etc.

I certainly know it’s not easy to learn it, especially when your neurologic package is enhanced by anxiety, traumatic experience and depression.

If I look back, I know it’s possible to increase life quality and still remaining in contact with all online contacts I won in the recent couple of years. Life quality for me includes physical health (enough sport, balanced food, enough sleep), the feeling of well-being when I’m hiking alone in the mountains, as well as managing the to-do-list of necessary and rarely loved things in everydaylife. Sometimes, I fail doing so but I don’t blame myself for it. I know I’m more rapidly exhausted as a neurodiverse person. It’s ok to fail.

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A minor remark on the opinion online addictive behavior is an artificial diagnose to create a lucrative profession for therapists

I had rather negative experience coming with a suspicion of a diagnosis. „You can’t have it.“ – „It’s something different. You pretend to have it“ – „It doesn’t exist, it’s just fiction to feed the pharma industry.“

A lot of people with autism and attention-deficit disorder will experience that, too, especially when it comes to seek for a diagnosis and disclosure afterwards. For those of us having doubts about potential addictive behavior with internet, don’t deny to have had these experiences.

Whether the term addictive behavior and standard therapy to reduce it without taking the environment into account, is the right path when you benefit from more internet usage than the average population, is another question to discuss. However, there are much more than us really suffering from it, or having had at least a history of negative impact (like myself). I’m able to admit that and try to focus on the advantages now and in the future.