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results of a survey study on autistic women

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flibbit
Snowy Owl
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21 Mar 2018, 6:17 pm

Hi, everyone. Last year I posted an advert for participation in an online survey concerning immune and hormone issues in women with autism. Here's the old thread: viewtopic.php?t=337841

The article summarizing our findings has now been published and, as promised, I'm sharing a link to the article. It's open access, so you'll be able to read the entire manuscript if you prefer. We got a surprising number of autistic women who also had diagnoses of Ehlers-Danlos Syndrome or Joint Hypermobility Syndrome, so that allowed us to focus on them as a separate group to autistic women without either of those conditions. We have another larger study with over 700 respondents that expands on these medical issues and will hopefully be published by the summer.

Article:
http://www.mdpi.com/2076-328X/8/3/35/html

Thanks, everyone, for your participation. This couldn't have happened without you! :mrgreen:



Chronos
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24 Mar 2018, 2:40 am

flibbit wrote:
Hi, everyone. Last year I posted an advert for participation in an online survey concerning immune and hormone issues in women with autism. Here's the old thread: viewtopic.php?t=337841

The article summarizing our findings has now been published and, as promised, I'm sharing a link to the article. It's open access, so you'll be able to read the entire manuscript if you prefer. We got a surprising number of autistic women who also had diagnoses of Ehlers-Danlos Syndrome or Joint Hypermobility Syndrome, so that allowed us to focus on them as a separate group to autistic women without either of those conditions. We have another larger study with over 700 respondents that expands on these medical issues and will hopefully be published by the summer.

Article:
http://www.mdpi.com/2076-328X/8/3/35/html

Thanks, everyone, for your participation. This couldn't have happened without you! :mrgreen:


Ehler's Danlos Syndrome can be caused by mutations on a number of different genes, one of which, COL1A2, is found on chromosome 7. Certain chromosome 7 mutations are also associated with autism or autism like characteristics in some individuals.



flibbit
Snowy Owl
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Joined: 9 Oct 2015
Age: 42
Gender: Female
Posts: 127
Location: New Orleans

24 Mar 2018, 12:18 pm

Chronos wrote:
flibbit wrote:
Hi, everyone. Last year I posted an advert for participation in an online survey concerning immune and hormone issues in women with autism. Here's the old thread: viewtopic.php?t=337841

The article summarizing our findings has now been published and, as promised, I'm sharing a link to the article. It's open access, so you'll be able to read the entire manuscript if you prefer. We got a surprising number of autistic women who also had diagnoses of Ehlers-Danlos Syndrome or Joint Hypermobility Syndrome, so that allowed us to focus on them as a separate group to autistic women without either of those conditions. We have another larger study with over 700 respondents that expands on these medical issues and will hopefully be published by the summer.

Article:
http://www.mdpi.com/2076-328X/8/3/35/html

Thanks, everyone, for your participation. This couldn't have happened without you! :mrgreen:


Ehler's Danlos Syndrome can be caused by mutations on a number of different genes, one of which, COL1A2, is found on chromosome 7. Certain chromosome 7 mutations are also associated with autism or autism like characteristics in some individuals.


Yep, very true. Although most people with Hypermobile EDS (hEDS), the most common type of EDS, don't seem to have any kind of rare mutations. So it seems that EDS and autism may share more in common than collagen alone. :)


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leahbear
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12 Apr 2018, 3:45 pm

Thanks so much for doing this work. I love participating in research but I was left out of your results since I'm undiagnosed and very bendy. I have a Beighton score of 7 and have had mild joint issues my whole life. Does this mean I have JHS/EDS or can one just be bendy?

I also seem to have dysautonomia. Your survey opened my eyes to these issues. I'm horrible for just accepting my dysfunctioning body but I'm on a new mission to get myself healthy. I have a very hard time communicating my issues to doctors and often have a hard time even knowing myself what is wrong. I often need to read detailed descriptions of symptoms or how these problems are experienced by other people. It took me 25 years and many different doctors to get diagnosed with PCOS and that one's relatively easy to diagnose. I never know what information they need and often leave things out. I think they didn't suspect it because I'm not overweight but they don't know that I had to work so much harder than everyone else to maintain my weight and I didn't know it was relevant and they never asked.



AuntieMatter
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08 Jun 2018, 2:45 pm

Thanks for posting the link. Researchers always say they'll share the final paper but they rarely do.
I had a JHS diagnosis before I was diagnosed with AS. Your study was the first I'd heard of any link between the two.

Best of luck with your work and congrats on the publication.