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.

What is mild autism?

Current autism diagnosis in Europe still refers to ICD-10 /DSM-IV where autism is divided into several categories like infantile autism (Kanner autism), Asperger’s syndrome, high-functional autism and pervasive developmental disorder not otherwise specified (PDD-NOS) which addresses to autism as social communication disorder without significant stereotypical behavior, restricted interests or rigid routines.

In the US, the DSM-V is already introduced merging all subtypes of autism into autism spectrum disorders, and determining severity or degree of support with additional numbers.

Most of the subtypes mentioned above are grown historically. Asperger’s syndrome has been called after the Austrian psychiatrist Hans Asperger while Kanner autism has been called after Leo Kanner. High-Functional Autism (HFA) is said to be classic autism from early childhood but with higher intellectual abilities (Tony Attwood doubts the differentation in HFA and Asperger’s syndrome is necessary). PDD-NOS covers the atypical autism when core autism symptomes are present but the development is atypical (which is often the case with 47,XXY-people).

In any case, there are a few key features of autism present in all subtypes:

  • enhanced sensitivity to sensory stimuli (sensory processing disorder, high emotional sensitivity, impaired gross and fine motorics) as „intense world syndrome“
  • different way of thinking, oftentimes pattern or visual thinking
  • difficulties to pick up social cues, prosody, facial expressions, reading between the lines

In some journals, self-support guides and parental reports, Asperger’s syndrome and PDD-NOS are considered as mild autism, attempting to euphemize the consequences of this diagnosis.

The perspective of mild autism may arise from the absence of

  • intellectual disability (i.e., IQ < 70)
  • rigid routines and rituals, stereotypes and repetitive behavior (making everydaylife and employment difficult to organize)
  • inability to speak
  • necessity to have full-time health care or special education/schools.

However, if you ask people with Asperger’s or PDD-NOS themselves, they will probably answer very different how severe they are affected. A study of Asperger’s and HFA asking them about their life quality has shown that the entire lifetime was characterized by ill-defined social development. Social difficulties are highly dominating throughout childhood and youth and will slightly decrease during adulthood. Growing up, the motivation to encounter social contacts increases but friendships are still relatively seldom reaching adulthood. The lack of partnership is specific for HFA/Asperger’s. With respect to therapy and support, comprehension, acceptance and emotional support are considered as most helpful for these persons.

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Even if someone with Asperger’s syndrome seems to function well in everydaylife, they might suffer from difficulties having and maintaining friendships, from continuous misunderstandings and erraneous picture of their personality. Someone who tends to talk in monologue might be perceived as arrogant and selfish while the opposite is actually the case. What you don’t realize, either, is the degree of sensory processing disorder. They may feel painful when background noise is given and are unable to have a conversation in a loud environment, which is a serious problem going to a busy party, into a loud restaurant or to a concert but also at work when many distractions are present.

You may not notice they have great difficulties with executive functions like planning, organisation, dealing with sudden changes, new things or simple housework stuff. They might have difficulties to accept a phone call or to call a stranger as it is often the case with public authorities. They would enjoy many opportunities but are unable to predict the unexpected to realize it.

As a summary, mild is a relative term because it is a judgement from outside.

  • Some severely autistic people want to be freed from their cage – they’re suffering from high amounts of incoming sensory stimuli.
  • Other severely affected autists may deal better with their situation and perhaps don’t consider themselves as severely affected.

The same holds true for so-called high-functional or Asperger’s or PDD-NOS autists:

  • Some of them might deal so well they are not even officially diagnosed. They have a job, partnership, kids and are satisfied with their life quality.
  • Some are diagnosed soon or later during their lifetime but are still able to manage well their situation.
  • And quite a lot of them are considered to have mild autism but suffer from lacking comprehension and acceptance.

If they tell about their suspicion or even official diagnosis, nonautistic people tend to imagine stereotypic pictures of classic autism and are unable to transfer this prejudice to their close friend or colleague or son/daughter. They may look at their „confession“ as an excuse instead of a reason for their odd behavior. They still believe it would be sufficient to „change the attitude“, „pull one’s socks up“ and „buck up“. To be seen as someone who pushs too hard is very disappointing and hurting for people with „mild“ autism. Life is difficult enough. Comprehension would relieve the lonely pain.

So if you talk or write about mild autism, especially about someone you know or want to describe, just ask them before if they agree with you.

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 !

Discovering myself

Since I know there is much more about this additional X-chromosome than testosterone deficit, three months are gone and now I see myself with different eyes.

That new episode of life startet with a scientific paper which I luckily received in full text form. I always had a suspicion being different. I also could not recognize myself in many symptoms of  Klinefelter’s diagnosis. However, I had trouble putting words to it. Of course, I noticed all over the years not getting ahead. Communication has often been doomed to failure. Difficulties arose when I expressed feelings, especially expressing them in a way to be understood. Reluctance to be interested in what peers do and talk about. I also think about assets going beyond the line which would be typical for peers but occasionally became obsessive.

I always occupied myself in an excessive way. Hours and hours, several days. Social contacts became secondary. Better writing another case study to a scientific event, putting another paper on the website. I loved exhaustively researching, spending much time although it was not demanded by my professors during studies. I always did much more for topics I was interested in. I came out of my shell and contacted even external teachers because I liked writing, I enjoyed realizing my english language knowledge.

Feedback encouraged me to continue. It’s the main reason I don’t have much respect to write e-mails to psychologists, physicians and geneticists, just by chance, as most of them will answer.
I realized my strengths by creating two wonderful websites providing a compendium of my special interest which is divided in several subinterests. I could fill books with it.

That passion of writing and irrepressible urge to inform is an important part of myself I cannot exclude. It is not what is commonly accepted for Klinefelter’s syndrome: „Learning difficulties, dyslexia, …“ In contrast, I read since I think and I write since I read. If I were able to set up dialogues, I would have become a professional writer. Sadly I could never imagine how a typical dialogue looks like as I was not able to take the other one’s perspective. Theory of mind – again and again putting a spoke in my wheel. Anyway, my passion to write did not lessen, it rather shifted from fiction to describing everyday life which is exciting enough instead of creating fictional stories.

The result of my IQ test in childhood suggested skills in natural science and weakness in language. In fact, my grades revealed the opposite. My processing time in nature science was too slow to keep up with peers, to solve problems – at least I suppose it now. In contrast, I felt comfortable with languages. I was the only man choosing french (instead of english) for intensive course. Speech has been much more difficult than writing and reading. Logical sentences. I was good in vocabulary. I also taught myself Latin, I read in an old (1970) dictionary for foreign words at home. I learn dialects quite fast, I understand them, I become familiar with the figures of speech and special vocabulary.

I have lots of fun with it and I found a text which took the words right of my mouth: It has been so relieving just to be understood. I have written so much about it without knowing why. The ability to learn languages rapidly but also the necessity to imite other people. I tend to do it too often, though, to send in the frequency of the counterpart instead in my own one.

Each week I am able to put another piece of the puzzle together, another mystery in childhood is illuminated. I cannot fade out days with anger due to the lack of skills to deal with other people, irrespective of a bunch of total strangers  releasing a flight instinct (save being drunk enough, like during a concert) or people being close to me. So it is not necessarily sufficient to know the cause for some behaviour. To know the reason is not the solution at the same time. It is not easy to outthink your mind. Rational thinking is freezing.

You do it because you have something and it leads… ok, that’s a statement, so what? I try to get rid of cursing about what still is not working, but rather try to distract me. I want clarity. My thoughts are free. My environment is inclined to say „you go completely overboard for the idea of any association of Klinefelter’s syndrome with autism!“ For me, however, it’s a feeling like a childs curiousity during first moon landing. Curious about what happens actually and to make a question time out of it.

My question time grows into a period of three months. Since my first contact with the fundamentals of Klinefelter’s and beyond the known facts, my research shed light into the darkness, revealed the basics of something I did not expect. Despite the fact it confirmed a gut feeling much more has been released lying under the surface for a very long time.

As usual I am rational in-depth, despite acting very touchy-feely to the environment. And I’m asking myself: Why? What are the effects of this lack of testosterone in my body, was does it mean to have an additional X chromosome?`Why is my amygdala smaller than with men having typical 46, XY karyotype? How does this bunch of hormones, genes and brain activity interact?

While I’m reading mainly scientific papers published in the recent couple of years, I’m still at the beginning. Suddently, my interest is as big as with my first special interest influencing my life for about 23 years.

For which reason should I stop this search? I act rationally, I know what I do NOT have. I also suppose many XXY men exhibit atypical autism traits if classified with autism spectrum disorder at all. Less manierisms, less stimming, less routines. However, I do NOT know that! As I contacted other XXY men in the first place, I did not know anything about behavorial issues! Autism was something special known from the unluckily stereotyping film Rain Man. So I did not recognize or payed attention to their behaviour. I was not even able to recognize myself in their biography.

In any case, dealing excessively with my life, my being and my underlying genes is a strong feeling of relief, like a whole rock breaking. Every light-bulb moment encourages my self-conciousness to take the bulls by the horns, stepping forward into the public. What could hurt me know? I know why, I work actively against my weaknesses. I DO something.  What else does someone want to blame me for?