Metamorphosis- Growing up with Turner Syndrome

15. A random rant about the discussion of- Cognitive impairment and TS

This is our starting point- a reply I wrote to a facebook post asking how to explain the cognitive aspects of TS. 

"Our brains- all in all work pretty normally, I suppose. If you want to stay more scientific, you could say verbal IQ tends to be higher, than performance IQ. So there are good receptive and expressive language skills, often better, than average. On the other hand, there might be struggles with visual- spatial orientation. judging length of time and distances, and also a slower processing speed in more complex tasks. Many other things are just results of that- difficulty with driving, multitasking, and maybe SOME areas of Maths where you cannot compensate with verbal skills. You will also find some scientific studies, where fMRIs of the brains of girls with TS where done, and you can actually see some average differences from a typical brain. That might be interesting, aswell, if you want to take a really deep dive into the topic. I would make sure to stress, that no possible effect of TS is seen in everyone with the condition- we all know examples for that-, and that TS does not equal "cognitive impairment", at least not, what people will imagine, when hearing that phrase. These are just some particular strengths and weaknesses, like everybody has them. Emotionally, we probably tend to feel insecure, sometimes anxious, (maybe overly) sensitive if we feel someone is not taking us seriously, we want to feel in control (obsessive compulsive behaviour is a thing, "real" clinical OCD maybe aswell, but not so much)- and obviously, all of that is somehow connected. We often have quite a bit of determination and perseverance. "Feeling different" and of course struggling with infertility are also important aspects to mention. These are probably only partly caused directly by TS, so some of the common emotional struggles we face might just result from the experiences we tend to go through- some others are maybe more "normal" and relatable for everyone, than we might sometimes realize. Again, generalizing anything is not the best thing to do, but these are in my opinion some common traits, and I apologize in advance if I have not done us with TS as a group justice." 

These are some things most people would think about, when discussing the neurocognitive profile of TS. So when writing this chapter, I will mention much of what is written above once more- and I will show, how talking about cognitive differences in TS might sometimes be highly problematic.

I somehow felt, that I had already written down all I had to say about this topic in other chapters- and in a way, indeed, I have. Still, the more I hear people talking about TS and cognitive impairment, the more I feel I have to write something concerning this topic again. Most importantly, there are two sides to this discussion, that have to be considered- scientists, in this case those who are not personally affected by TS in any way, and the parents of children with TS who are not medical professionals and rely on the information they are given by their doctors.

So let us start with the scientific side of things. If you, god forbid, google something like "IQ in TS", you will quickly find a number of scientific studies- most of them seemingly accurately done, reaching plausible conclusions -and titled "cognitive impairment in TS". The gist of these text seems to be easy enough to understand for any layperson, and yet not that easy to put into the right perspective. Basically, what is consistently found in the girls with TS that are tested are relatively long processing times for information, relative weaknesses with visual- spatial orientation and coordination, as well, as relative weaknesses with executive functioning- so mainly with organizing stuff into different categories, attention span and working memory for anything that is not words. "Problems with Maths" and "strong verbal skills" is not a very detailed way to describe this particular set of strength and weaknesses- because as I said before some parts of Maths might be far more difficult than others for some of us, although about half of girls with TS do seem to meet the criteria for some learning disability that involves Maths. (You could also rephrase that and say: Over half of the girls with TS are probably not significantly worse at Maths than they would have been had they not had this condition, and around 20% is a (ridiculously high) rate of Dyscalculia some studies might even find in the general population, but - but needless to say, one has to be very careful with these numbers because they could be vastly inaccurate in both directions. Also, the term "Mathematical abilities" describes many very different abilities all tossed together anyways, and compared to any intelligence test even more so in real life). On the other hand, verbal skills in individuals with TS tend to be measured as (only) average overall and even as poorer than those of typical women in some particular areas, that could be impacted by poor visual- spatial orientation, longer processing times or social anxiety. Now, scientists go on to do functional MRI (fMRI)- scans of the brain in order to find average differences between those with TS and typical women. And this is, were things get really tricky, because, unsurprisingly, they find those differences, at least beginning to understand how to correlate those to the typical cognitive profile of someone with TS ("unsurprisingly", because average differences in the size of particular brain regions and the number of connections between them between typical males and females are well established. Yet, if you gave one specific brain to an experienced pathologist, they will rarely be very sure if it was a male or female one.) Instead of calling them just that, "differences", however, they tend to label what they find as "abnormalities". "Brain abnormalities"? Are you serious? Here is, were I have to interject. I do not at all oppose speaking of "brain abnormalities"- if and only if, as the term Implies, SIGNIFICANT problems in the functioning of an actual person can be seen. Now, what to label as significant findings is obviously up for debate, but few people familiar with TS would argue, that we typically have "brain abnormalities" caused by our condition. At the very, very least, while scientists and doctors might or might not be able to draw the right conclusions from such a paper, any layperson would freak out and imagine far more serious "cognitive impairment" than is ever seen because of TS. I feel, like after reading this kind of scientific study- any mother of a girl with TS would get the impression, that she might just as well give birth to a daughter with Down's syndrome, a notion being reinforced by many girls with TS actually mentioning their condition in one breath with Down's in order to explain what chromosomal aneuploidies are or to advocate against abortions for both groups of people. Is the word "syndrome" not associated with "Down's syndrome" often enough already in the mind of most people? I could also say, that, in writing about "cognitive impairment" and "brain abnormalities" in TS, you might unintentionally cause the abortion of some foetuses with TS. You might also unintentionally ruin the life of other girls with TS who are forced into an "special education" class at a young age- were most of them DO NOT BELONG and their significant intellectual potential cannot develop appropriately. If you are surrounded by disabled people and treated as a disabled person, you will end up disabled.