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 Post subject: Link between EDS and Austism Spectrum Disorder
PostPosted: Wed Mar 05, 2008 3:52 am 
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Crystal Spoon
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Joined: Thu Jan 11, 2007 9:25 pm
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Location: Connecticut...part-time Texan...and French at heart :)
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This is kind of a weird question...

I was at my psych appointment and we talked in depth about my social/behavioral issues and he (and I) are curious about something.

I've spoken to quite a few people who have EDS and some sort of Autism Spectrum Disorder...and I've causally heard hints of a link between the two but the sites that I've found studies about the supposed link require log in and subscription as they're for doctors.

I've done some searches...and there's a spattering of people with ASD and a CTD (Connective Tissue Disorder) most commonly EDS and Marfan.

Has anyone heard of a link? Can you help me find information on it (also am thinking of calling my geneticists on this one)

Also if you're comfortable...those with EDS and ASD...can you please stand up? (Sooooo just had an Eminem moment :) )

_________________
~Stephanie~

Unknown genetic disorder causing EDS, Dysautonomia, Asperger's Syndrome and other wacky things (ie. seizures, vision impairments, JRA)
Also have Bipolar I, Borderline Personality Disorder, EDNOS and some other stuff.

I am rarely here so if you wish to speak to me please use my email provided in my profile. Thanks :arrow:


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 Post subject: Re: Link between EDS and Austism Spectrum Disorder
PostPosted: Thu Mar 06, 2008 5:47 pm 
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Table Spoon
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Joined: Tue Jun 12, 2007 12:55 pm
Posts: 1028
Location: connecticut
i have an asd and have been "diagnossed" years ago with hypermobility syndrome

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Paxton Edward * CT * 24
hereditary spastic diplegia/paraplegia
EGID, dysautonomia, EDS III, todd's palsy, aspergers
HoH/Deaf bilateral hearing aids, L70% R40%
poet, day dreamer, bassist, athlete, gLeek


caringbridge.org/visit/pax-is-awesome - my CB page

GO WOLFPACK!!!!


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 Post subject: Re: Link between EDS and Austism Spectrum Disorder
PostPosted: Thu Mar 06, 2008 7:30 pm 
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Crystal Spoon
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Joined: Thu Jan 11, 2007 9:25 pm
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Location: Connecticut...part-time Texan...and French at heart :)
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I talked to Ioma as well...she tried to get me some info but ran into the same problem I did (trying to log in and all) I talked to her for two hours :)

Edited to add: Don't know where she went...but there is a member named Kassiane who has Classical EDS and autism.

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~Stephanie~

Unknown genetic disorder causing EDS, Dysautonomia, Asperger's Syndrome and other wacky things (ie. seizures, vision impairments, JRA)
Also have Bipolar I, Borderline Personality Disorder, EDNOS and some other stuff.

I am rarely here so if you wish to speak to me please use my email provided in my profile. Thanks :arrow:


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 Post subject: Re: Link between EDS and Austism Spectrum Disorder
PostPosted: Tue Jun 24, 2008 3:57 pm 
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Spoonie in Training
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Joined: Sun Jun 22, 2008 5:04 pm
Posts: 74
Location: hartlepool UK
i used to work with autistic spec kids. there was quite a few with marfens. i also remember now you metnion it that alot of the aspies were very flexible.

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Love carrie & phylis xx

vip,bp,hms


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 Post subject: Re: Link between EDS and Austism Spectrum Disorder
PostPosted: Wed Jun 25, 2008 6:16 am 
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Baby Spoon
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Joined: Tue Jan 22, 2008 10:21 am
Posts: 486
Location: The foothills of NC
My middle son has an appointment with a specialist next week. I am going to try to remember to ask him about this.My younger 2 sons have aspergers and hypermobility(possibly EDS). There was a quote in a book on amazon referring to a study that showed some relationship between these 2. If I find it again, I will post the link.You can read a few lines that this study exists, but you probably have to buy the book to read the very small amount of info listed about it.

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~Samantha~

My Etsy.."Made By Samantha"

Scoliosis, Lordosis, IBS, TMJ, CMP, panic disorder, eczema, CFS, chemical sensitivity, migraines, EDS type lll, Osteopenia, asthma, chronic brochitis


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 Post subject: Re: Link between EDS and Austism Spectrum Disorder
PostPosted: Mon Aug 25, 2008 7:04 pm 
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Crystal Spoon
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Joined: Thu Jan 11, 2007 9:25 pm
Posts: 9105
Location: Connecticut...part-time Texan...and French at heart :)
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I'm bumping this 'cause I noticed two newer members who have EDS and kids w/autism.

_________________
~Stephanie~

Unknown genetic disorder causing EDS, Dysautonomia, Asperger's Syndrome and other wacky things (ie. seizures, vision impairments, JRA)
Also have Bipolar I, Borderline Personality Disorder, EDNOS and some other stuff.

I am rarely here so if you wish to speak to me please use my email provided in my profile. Thanks :arrow:


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 Post subject: Re: Link between EDS and Austism Spectrum Disorder
PostPosted: Mon Aug 25, 2008 8:05 pm 
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Spoonie in Training
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Joined: Tue Aug 19, 2008 3:47 am
Posts: 2
Location: Hervey Bay Qld Australia
Hi,
My son is going through the process fo diagnosis at the moment, he is 4 years old. His current diagnosis is Autism Spectrum Disorder (not placed on the spectrum) and Hypermobility Syndrome (but GP & Genetisist think EDS).

I would really love more information on this, I will be watching this great interest! :shock:

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I have a 4yr. old son Tristan with current Dx Hypermobiltiy Syndrome (possible EDS), Austism, Incontinence, Intellectual Impairment, constant reflux etc.


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 Post subject: Re: Link between EDS and Austism Spectrum Disorder
PostPosted: Tue Aug 26, 2008 1:46 am 
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Spoonie in Training

Joined: Fri Aug 15, 2008 3:55 am
Posts: 125
Hi, never thought of it, but..

I have EDS and ASD also runs in our family.
I have 3 kids, 2 daughters one with EDS, and another who is hypermobile and ASD but not diagnosed.
I also have a 8yo son who is is also ASD.

I will be wathcing any info that can be found with interest as well.

_________________
27yo with eds 1, mum to lochie 8 autism, intellectual impairment. Ellie 7 EDS 1. Charlotte 6 severe respiratory, heart conditions, epilepsy, unknown anaphylatic food allergies, hormone issues, growth probs (been told prob has some gen syndrome but noone seems to want to find out what.) With our genes why did i have kids?????


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 Post subject: Re: Link between EDS and Austism Spectrum Disorder
PostPosted: Tue Aug 26, 2008 1:20 pm 
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Spoonie in Training

Joined: Tue Jun 24, 2008 8:35 pm
Posts: 27
Location: Arizona, USA
We've been kicking this one around for a little while. I've heard of some link between ASD and EDS, but it's mostly situations like this, where enough people with both diagnoses get together and start wondering if the two are related. Nothing "official" unfortunately.

It's highly interesting to me because I was placed on the autistic spectrum just last month (and other than to my husband and one other friend, this is the first time I've admitted to that). Nobody's written H-EDS in my medical file yet, but once my other tests come back all negative, my doctors plan to. My husband is undiagnosed so far, but he's very clearly classical EDS, and we were told by the doc who caught my ASD that he most certainly is also on the spectrum. Kind of weirds out our doctor that two people with such unusual disorders managed to meet, and marry, and never know about any of it until 12 years down the line.

It gets even more interesting in that our youngest son was diagnosed with asperger's or high-functioning autism, depending on who you talk to, and he is absolutely, positively the "worst" classical EDS'er in our family; our family doctor didn't even bother to refer him for diagnosis, the EDS is that obvious. Not too weird till you consider, he's not genetically related, he was an older child when we adopted him, he wasn't diagnosed ASD until we'd had him almost a year, and we did not seek to adopt, at all. We were doing mentoring, and after 4 years of working with him, we were asked to consider keeping him. Oh and we all discovered EDS when a longtime friend (who is very similar to our son and we believe is aspie, and the friend, though not interested in formal diagnosis, agrees with us) was diagnosed with EDS early this year.

So I don't so much need a study to verify that ASD and EDS are somehow, sometimes, related; to me it's already a simple reality, though I have no idea what causes that relationship. I do, however, wonder if there's a study about completely unrelated ASD people with EDS, and their apparent tendency to "clump together" socially!!


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 Post subject: Re: Link between EDS and Austism Spectrum Disorder
PostPosted: Mon Sep 08, 2008 3:27 pm 
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Baby Spoon
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Joined: Wed Jul 16, 2008 7:59 am
Posts: 303
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I've been wondering about this myself actually. Certainly on the hypermobility site I've just been reading (nothing like a bit of pain to make you go on the runaround for a potential self-diagnosis) I fit the lot, down to the lordosis and "associated dyspraxia"! Yep, I can still put my hands flat on the floor with my knees straight, and said knees hyperflex a little when standing (I found this out after I tore a load of ligaments demonstrating to someone how I could still do the lotus position, without taking into account I was in thin but tight jeans, outside, in february, without stretching... duh... anyway physio told me pretty much to be aware of it and try not to lock my knees "straight" when standing up as they bend back a bit)

BUT... I digress. I mentioned dyspraxia. Now, I was late being dx'd with that (17) because it was a learning difficulty specialist who saw me at that age who diagnosed it. However I had a list of all the associated physical traits of developmental problems already, along with the social withdrawl/misunderstandings... and the way it was presented to me then was that while dyspraxia is primarily a learning difficulty and a physical developmental disability, it is also related to/comorbid with (and used to be known as) High Functioning Autism. I have sinse had it suggested that I am quite likely at the very tip of the Spectrum, though not officially dx'd.

So while not officially either, I definitely have traits of both!

It's interesting though, that Dyspraxia might be the link you're looking for.

_________________
*history of* Depression *fingers crossed*, Dyspraxia, possible Aspie, Hypermobile (9/9 Beighton now and 'nuff of the rest, yeah I should get round to getting that Dx'd), Lordosis.


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 Post subject: Re: Link between EDS and Austism Spectrum Disorder
PostPosted: Tue Sep 09, 2008 11:55 pm 
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Crystal Spoon
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Joined: Thu Jan 11, 2007 9:25 pm
Posts: 9105
Location: Connecticut...part-time Texan...and French at heart :)
Blog: View Blog (1)
Right now my diagnosis changed to suspected AS because my psych wants to see what symptoms were more Bipolar related...there apparently are quite a few kids who were diagnosed with ASD or ADHD who were simply manic-depressive :)

Geneva: that is SO weird that all those random Aspies with EDS got together...and why aren't there any HERE?

(there are also a lot of people with EDS and SLE, or EDS and RA...and even better...EDS and JRA!!!!)

But yes, my psych says I definitely have a developmental delay...seriously he's the third doctor who's told me that.

_________________
~Stephanie~

Unknown genetic disorder causing EDS, Dysautonomia, Asperger's Syndrome and other wacky things (ie. seizures, vision impairments, JRA)
Also have Bipolar I, Borderline Personality Disorder, EDNOS and some other stuff.

I am rarely here so if you wish to speak to me please use my email provided in my profile. Thanks :arrow:


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