Metamorphosis- Growing up with Turner Syndrome

7. Caught in destructive patterns- Obsessive compulsive behaviour

I have thought long and hard about this topic, trying to make sense of it for myself, because we with TS are in general supposed to be bad at pattern recognition, when it comes to e.g. numbers, are we not? We are also supposed to be bad at organizing stuff, so to say at the stereotypical putting- your- things- down- on your- table- in- a- perfect- ninety- degree- angle, are we not? If you were to take one hundred children on the autistic spectrum as well, as one hundred with TS, and test their performance IQ- the differences between those two conditions should in my mind be obvious, despite some overlap between them and inspite of all I wrote about our oftentimes underestimated math skills. (I am talking about what used to be known as Asperger's autism here, not e.g. about the various conditions that cause mental retardation together with autism- like features). In this case, there seems to be a world of difference between the mental characteristics of people on the autistic spectrum, who tend to express obsessive compulsive behaviour, and those with TS. We are supposed to be the creative ones, right? So it would be quite counterintuitive, if we should at the same time have very rigid, inflexible patterns of thinking and behaviour.

And yet, while either stressed out or bored, I occasionally find myself without conscious decision pacing back and forth between the door and the opposite wall, back and forth, back and forth, trying hard not to call what I am doing stimming- self stimulating behaviour- once I realize what I am doing- as if I was referring to an autistic person. I also might keep drumming a certain rhythm on a table with my fingers, or I more importantly might have a very programmed, defiant reaction whenever I suspect someone is not taking me seriously. So why do we repeat those patterns of behaviour? Why do we tend to get stuck in them, and what about them might feel soothing?

A tendency towards obsessive compulsive behaviour does not necessarily mean one has obsessive compulsive disorder. Most individuals with TS will probably not fit into the stereotypical picture we have of "real" clinical OCD. For us, it  is not about disinfecting everything we touch three times or keeping our house perfectly tidy. We do not usually wash our hands over and over again, nor do we keep counting the cups and plates in our cupboard for ages. Nevertheless, the key aspect of it might, for us, too, be taking control. Obsessive compulsive behaviour is the result of anxiety, and by seemingly taking control of something small, one can try to keep the overwhelming anxiety about something else temporarily at bay, because that in and on itself insignificant action gives one the illusion of also being on top of everything else. Mostly, repeating those patterns over and over again is not a healthy coping strategy, because it is ineffective in the long run and on top of that makes one's thinking inflexible, impairing one's functioning in any number of situations. It can also make the way one is behaving seem quite "weird" to others, although that should mostly only be the case if one really has OCD. I would argue, that there could well also be a non- bothersome degree of obsessive compulsive behaviour everyone expresses. But for us with TS, it can be a different story. 

The way our brains are wired seems for whatever reason to encourage very black- or- white- thinking. Oftentimes, I am either committed to something wholeheartedly, with every bit of the considerable perseverance and rigour I have in me, or I just cannot see the point in trying it at all. For me, there is no middle ground. That in and on itself might suggest some inflexibility of my thinking. And, sure enough, it can easily lead to someone feeling trapped in a certain social situation. What, if you fail to understand all the grey areas between "they all like me" and "they all hate me, so it does not make any difference what I do" in a social situation? If you rationally know, that these grey areas exist and are quite  important, but emotionally, you only feel that "no one gives a damn about you"? It seems obvious, that this way of thinking might in part explain increased rates of anxiety and depression, which leads us again to obsessive compulsive behaviour as a possible sign of heightened anxiety. To sooth their anxiety about getting late, especially children might ask whoever is with them fifty times about whether or not they are most definitely going to arrive on time. Although we are said to have weaknesses concerning planning and organizing, children with TS might have a very set idea of what they are planning to do on a given day and get uncomfortable with sudden changes in their schedule. Me, I wanted to watch the same program on TV from 19.20 PM to 20.00 PM every evening, maybe until I was 14 years old. Whenever we could not make it at that time, I was far more upset about it than my sister who is two years younger than me- because it was not mainly about me enjoying this particular program on TV, it was more about it being a set part of my daily schedule. I might in fact have a relatively small range of tolerance for any kind of change- us moving after 8th grade and me having to attend a new school e.g. put me through hell, and, again, my sister did not care too much. (The not liking change is something I have also heard about with Fragile X- Syndrome, which is a condition caused by a particular damage of one X- chromosome and tends to affect boys far more seriously, than girls, also causing mental retardation. Could there be any connection to TS?- I am really not sure.) Another thing is, that any uncomfortable situation I am in at the moment might feel- more absolute, as if it is never going to end. Now I think of it, even my sudden changes in heartrate and blood pressure could be explained this way- especially in a hospital setting and when a physician is trying to take those vital signs. Where most people would get slightly nervous, and understandably so, I in one moment feel like the world is going to end, freezing completely and with my heartrate and BP going through the roof, whereas one second later, I am just managing to calm ourselves down and keep my anxiety temporarily at bay. That might to some degree be an overdramatization, but you still get the idea. And, last but not least, there is the danger of overthinking and overplanning social situations in addition to dwelling on past mistakes. One might easily fall into the trap of recalling past mistakes over and over again, constantly wondering what one could have done better, every time feeling humiliated by one's failure once more. Thereby, one might well forget to live life forwards, to grant oneself a second chance. I am not sure about how many of my TS sisters- and, just importantly, how many people in the general population, can relate to the patterns of behaviour I described. Anyway, this is just my very personal experience.