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LisaM1031
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07 May 2022, 12:12 am

I’ve been doing a lot of research lately after my son’s ASD diagnosis and suspecting for years that I’m Aspie as well. Before I even looked into autism, I suspected I may have a connective tissue disorder of some sort, such as EDS. Marfan syndrome doesn’t fit because I’m of average build. Here are my symptoms.

Very hyper mobile (9/9 on Beighton scale)
Severe nearsightedness (could be related to connective tissue)
Born with hip dysplasia requiring a corrective cast
Scoliosis
Mitral Valve prolapse

My son also seems to have inherited my flexibility.

I was a bit surprised to find EDS and hyper mobility are linked to ASD (though not 100% correlation). I guess this just cements it further that I’ve probably been autistic all along :)



Dillogic
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07 May 2022, 4:36 am

I have Ankylosing Spondylitis which sorta has a connection to Autism and the genes involved, but it doesn't bother me so I often forget about it. It's technically a connective tissue disease, but there's some systemic stuff with it too.

I know there's people with Joint Hypermobility Syndrome around here too, which is overrepresented in those with Autism, as you said.



Lady Strange
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07 May 2022, 7:11 pm

Yeah I have the hypermobile thing too, and just found out this past year my niece was diagnosed with EDS through my brother having hypermobility (never knew that!).



EstherJ
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12 May 2022, 4:23 pm

When I was evaluated by a geneticist for EDS (which I have), I mentioned, 'oh, by the way, I'm autistic'.

She said, 'oh, I thought there was a high chance you were before I met you'.

Apparently it's a pretty major comorbidity with EDS.



kraftiekortie
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12 May 2022, 5:04 pm

I "go against the grain," so to speak.

I'm pretty stiff....



Kanashiihawk21
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12 May 2022, 5:36 pm

I am ASD (female 58 yrs old) and have been finally formally Dx'd with EDS/Hyper-mobility. I went through a lot of different diagnoses with different doctors (from Rheumatologists to Orthopedists and the works). At first I was told I had autoimmune connective tissue disorder, then they changed it to dermato and polymyositis with connective tissue disease and finally about 3 years ago, they finally were able to genetically test me for EDS (Probably since I am near a large teaching medical university near St. Louis, so they had the facilities to do it).

As a child, I was NOT really more "hyper-mobile" than many of my peers, I just had the terrible knack of 1) Being as pale as a vampire (even when spending summers in the sun horseback riding where I would only burn to a crisp) 2) Being VERY klutzy and always falling/crashing/being thrown (and way to much of a daredevil) and at the time, I thought I was just darn lucky not to have broken more! Turned out the hypermobility had a hand in that!

Later in life, after more mystery diagnosis from military and civilian doctors, my whole body became like a lanky wiggly tube person (those god awful scary things outside phone stores!) anyway, I can bend my spine and hips at impossible angles, same with the shoulder blades and even my individual cervical and spinal vertebrae can sometimes become "dislocated" (not on purpose!! ! Just because all my connective tissue is breaking down)... Believe me it is painful trying to pop them back in! So yes... I have heard it runs more frequently in FEMALES? (My adult son 35 is ASD and he is NOT EDS, nor is he hypermobile).

WE (meaning All of us in the ASD community) know so much more it seems about boys/men and how THEY present with ASD but girls/women are much different... As far as I know I am the only ASD older female in my area with EDS too!
Best of Health!
Warmly,
Jackie


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EstherJ
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12 May 2022, 5:53 pm

EDS is rare.
Statistically, the determining factor is the EDS. If someone has EDS, there seems to be a pattern of them also being autistic.
It's not that autistic people in general are more likely to have EDS - if that were the case it would not be a rare disease. The full genetic connection is very far from being researched scientifically.