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Dear All,
It is well-established by now that, while the majority of people seem to have a very similar brain organization (neurotypical people), a subset of people have different brain organizations (non-neurotypical people). According to wiki (https://en.wikipedia.org/wiki/Neurotypical), non-neurotypical people tend to have developmental disabilities such as autism, dyslexia, developmental coordination disorder, and/or ADHD. Autistic people are probably the most popular subset of non-neurotypical people.
Now, brain development seems to be sensitive to collagen mutations, since, for example from wiki (https://en.wikipedia.org/wiki/Gray_matter_heterotopia#Preliminary_Material:_Neurological_Development_of_the_Human_Fetus): “Neural matter originates in the outer, ectodermic layer of the gastrula; thus, it originates from the cell layer primarily responsible for skin, hair, nails, etc., rather than from the layers that develop into other internal organs.” In other words, collagen has a great potential to affect cell migration, which is crucial, among other things, for brain development.
I think that it is then plausible to expect that a (large?) number of people with EDS are non-neurotypical to an above average degree. Indeed, a relationship between periventricular heterotopia and EDS (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1288408/), and between autism and EDS (http://onlinelibrary.wiley.com/doi/10.1111/j.1440-1819.2011.02262.x/full) have been found. More generally, a multitude of PSYCHIATRIC disorders have been associated to EDS (http://www.ncbi.nlm.nih.gov/pubmed/25821094).
This brings me to some of my observations. I personally have a mixture of classical and hypermobile EDS, and when it comes to indicators of developmental disabilities I have: (1) mild autistic traits, (2) a mild form of dyslexia, (3) severe acrophobia (fear of heights) since I was born, and an inappropriate perception of mirrored images (both of these go under coordination disorders, I believe). I do not have ADD per se, but the kind of brain fog I sometimes get does mimic an attention disorder. In addition, as I child I had (retroperitoneal) ganglioneuroma, which is a rare kind of tumor that results from an inappropriate neuronal migration. This, together with non-neurtypical traits that I have, perhaps points to a generalized neuron migration problems, that can be well explained by having a defective collagen in the whole body. Interestingly, my sister, who displays similar hypermobility to me, has ADD and an unexplained stuttering (speech problem) since childhood.
Furthermore, I was analysing in detail other people with EDS (both on Youtube, and in real life – I know the sample size is suboptimal, but the observations seem to be consistent), and, aside from physical similarities (which are more suited for another topic – lips tend to be “more red”, an increased chance for more child-like appearances (neoteny), an increased chance for being androgynous), I see definitely above average psychological similarities. For example, (1) above average intelligence (IQ), (2) higher anxiety, (3) a higher tendency to be organized, (4) perfectionism. No doubt some of these traits are secondary to our developed coping strategies, but I think there is more there – I think that many of us have a similar kind of neuron migration problem when developing as fetuses and children, which leads to an above average chance of psychological similarity. Do we perhaps form specific subsets of non-neurotyical people?
I would be interested in reading what others here think about this. 🙂
Interesting stuff!
Our family has symptoms of EDS, hypermobility type. Each family member has a different presentation of joint laxity although shoulders and ribs seem to be most affected. It makes me wonder what process is taking place during fetal development to make some joints more hypermobile than others.
As far as brain stuff goes, our family seems like is has more than our share of anxiety and mild depression. No one has been diagnosed with autism but some could possibly have undiagnosed mild autistic-like behaviors. On the plus side, everyone in the family has tested out with high IQ (all in top 2%). Don’t know if the high IQ is related to the EDS thing or not because the older generation members that are not on the EDS side of the family have high IQs as well.
You are asking some fascinating questions that I hope will be answered sometime in my lifetime!
So interesting. I’m not certain about making a blanket statement but the premise is interesting. Out of 4 children pretty sure we’re 4 for 4- only 1 has been diagnosed, the others are adults and are not sure they want to launch themselves into the diagnosis. Odd since we’re Hypermobile with Classic aspects- no one heard of connective tissue disorders when I was a little girl. SO many kooky things have been explained, SO many!
I think we’re similar to descriptions in the post, a lot identical, would have to go through one by one. I’m answering the original post mostly to see what members who know much more than me have to say. We’ve only been diagnosed for 2 years- extremely new. WHAT a relief. Gosh. All these seemingly disparate ‘things’ for all these years now make sense.
The relationship between ASD and EDS is actually what led to me hearing about Ehler’s-Danlos and other connective tissue disorders in the first place! Obviously research is ongoing (which is true of just about any medical condition – that’s why medicine is called a “practice”) but I found some good information here: http://www.sciencedaily.com/releases/2014/10/141010154926.htm and also here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3365276/
Then there’s this neurologist who is supposedly continuing research into the subject: http://corticalchauvinism.com/2013/08/12/ehlers-danlos-syndrome-and-autism/
I can only speak for myself, but based on my own personal experience I believe there is a high degree of credence to the theory that inflammation in the mother during pregnancy leads to the overgrowth of certain parts of the brain in the fetus that continues into infancy, and I don’t think it’s a coincidence that the area affected has been linked to both autism spectrum disorders and connective tissue disorders.
As for the other questions – pertaining to IQ and shared physical traits – I only have myself, my mother, and my sister to evaluate, but you may be onto something. My mother is highly intelligent in a non-traditional way (incredible empath, thumb so green it could produce it’s own chlorophyll) and was thought to be about 10-20 years younger than she actually was up until a couple years ago. I’m 30 and I’m regularly mistaken for a 19 year old; my sister is 6 years older than me and we’ve been asked multiple times if she’s my twin sister. I’d say we’re both above-average intelligence, and that we both exhibit some ASD traits as far as specialized areas of interest and poor social skills are concerned.
I only know one other person who has been dx’ed with EDS, and we’ve only texted, so I can’t vouch for her physical traits. I can say, though, that she is incredibly intelligent.
As to the postulation that we are commonly more anxious than neurotypicals…again, speaking only for myself, I’ve found that I’m less anxious when I’m in less pain, or in a really positive place mentally. It’s only when I start to feel as though my skin is made of wasps, or my body is trying to kill off my brain, that I start to get anxiety. Something about not feeling totally comfortable in my body makes me hyper-aware of what it’s feeling and everything else around me – that heightened awareness leads to my anxiety. Most of the time I’m really relaxed and easy-going.
Organization and perfectionism.. I just (humorously) attributed those traits to the fact that I’m a Virgo. Both definitely apply to me, though.
There’s also this blog you can check out: https://planetautismblog.wordpress.com/2014/09/11/connective-tissue-disorders-their-correlation-to-autism/ which was my first step in discovering EDS. Hope some of this long, rambling reply helps!
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