similarities to aspergers / autism?

I know the question has come up before about intelligence and EDS as to whether we might have above average intellect as a result of EDS but along the same lines, i have realized that quite a few EDSers get misdiagnosed with aspergers syndrome before doctors finally figure out that it is actually EDS instead. Also, even though I doubt i have aspergers, I tend to relate well to people who have it, a lot of times better than i do to neurotypical people. The odd thing is that i find that exact same kind of connection with EDSers. I wonder if there is more to this casual observation than science has yet to figure out or if it is just coincidence? Any thoughts, opinions, or research i don't know about? Thanks and gentle hugs! Sorry about typos.. I am using a messed up keyoard and going to swipe it out tomorrow Lord willing.

Edited May 24, 2012 at 3:10 am

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I hope you'll forgive my ignorance, but how would EDS look like Aspergers? Isn't more likely that someone has both EDS and Aspergers or ASD, just like we can have EDS and any other disorder?

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There are neuro and cognitive effects in EDS, but it varies by type and by each individual person. I was misdiagnosed with Asperger's but it ended up being other neuro stuff instead. Neuropsych testing ruled out Asperger's. The EDS is connected with some of my neuro issues, but not firmly. My body is too complicated and I have too much wrong to distinctly say "this is from this, and that is from that".

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i was diagnosed with aspergers, after my son was. my son does not display any of the eds hypermobility symptoms that i do, but is sooo like me in many, many ways. my daughter has eds hypermobility, a silly high iq and bipolar2, like me, but no aspergers. they both share my genes.

neither have myopia nor scotopic sensitivity syndrome, like me. dodged that bullet.

is eds associated with any of these "neurological" conditions? good questions. we are very complicated machines.

i, too, relate very well to folks on the autism spectrum. among other professions, i was an autism specialist working with mrdd adults. before i was diagnosed. takes one to know one?

i was not misdiagnosed. i am definitely aspie.

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And I am decidedly Asperger/HFAS, too. AS is far, far more common than EDS.

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glial cells are connective tissue cells. sort of. hmmmm

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I agree with jennbrooke that I don't think EDS would be misdiagnosed as Asperger Syndrome, since they don't have similar symptoms. One is primarily physical while the other is primarily mental. I have seen several forum discussions and some mention in EDS documentation that there may be a higher risk of Asperger with EDS... not sure why but i do wish they would study to find out. My son has been officially diagnosed with Asperger, and seeing what the doctors attribute to Asperger in his behavior, I (and my mother) have come to realize that I meet the same diagnostic criteria. I imagine if Asperger had been in the diagnostic manuals when I was a child, I would have been diagnosed with it as well (it was not added to the DSM until the mid 90's).

I do have an official EDS type 3 diagnosis, and my son seems to have many EDS symptoms too, so I can certainly say that in my family, at least, there seems to be some link between the two conditions. I would definitely say that one does NOT rule out the other in any way!

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I'd say there is definitely a connection between these stripes, fellow Zebras! My son, Aged 3O is diagnosed with Asperger's, and now is most definitely starting to display many disturbing hypermobility/EDS traits as well. And I have always said "He comes by his Asperger's honestly, because I am so very much like him cognitively and neurologically, but on the much more mild end of the scale!'

I became a Teacher of Deaf and hearing Impaired Students who eventually did doctoral work in Severe and profound Handicaps (sic) who also always gravitated to working with and tolerating well people on the Autism disorder Spectrum long before my own son was born. Yeah....I concur..."It takes one to know one!"


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I can imagine some reasons why EDS might be misdiagnosed as Asperger's or Autism in a child, especially if the child also has an anxiety disorder (which is very common in EDS)...

Symptoms commonly found in both Asperger's/Autism and EDS:
- problems with proprioception
- physically clumsy
- poor balance
- awkward gait and unusual posture
- hypotonia
- trouble sleeping
- difficulty understanding, processing, or describing emotions (associated with anxiety disorders)
- social withdrawal (can be due to the pain, anxiety, or fatigue of EDS)
- increased sensitivity to light, sound, touch, etc
- chronic constipation or diarrhea

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Could someone show me medical/scientific articles pointing out a connection or statistical analysis of AS and EDS? I haven't found any, I only encounter a lot of wondering. I was interested in the possible connection in the past, and still am intellectually, but these days I don't see the practical point of speculation; how does it help us? EDS is a collagen mutation and not a neural disease, and until someone can tell me how a collagen mutation would affect neural development sufficiently well to get a researcher interested, well, speculation and $2 gets us an OK cup of coffee. We don't know much about either EDS or AS, although we're learning a lot about AS quickly because it's much, much more prevalent than EDSand there's a lot of money being thrown at AS.

I am reminded yet again of Hickam's dictum: "Patients can have as many diseases as they damned well please." Just having two or three or four different disorders doesn't mean they're related except by chance.

But I'm probably being a too literal today, and not very neurotypical...I get caught up in odd opinions now and then. Either my brain or age. Or both.

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i too sought out "medical/scientific articles" for a connection. i too found only questions of same in other forums. so i started trying to find a connection between connective tissues, collagen and brain development. not much there, but did find references to connective tissue and brain tunnel/glial cell formation. not enough to form a connection to eds, but an interesting possibility. i intend to continue researching this interesting possibility. aspies...

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There may not be peer reviewed articles yet but it was talked about at length at the EDNF conference last year. A lot of the session for scientific and medical professionals addressed that many children in particular were misdiagnosed with an autism spectrum disorder. It was encouraged that doctors re-evaluate this diagnosis because it may have been EDS causing those symptoms.

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First, you're talking about misdiagnosis, not a link between EDS and AS. Second, where was it talked about at length? Not in any session I was in. And it's not in any of the doctor's notes, and I'm the person responsible for the notes being online. There wasn't a general session for scientific and medical professionals—are you talking about the Q&A for professionals only that lasted less than an hour?

And today, there's evidence that MOST of autism is environmental, not genetic.

"Autism now affects an estimated one in 88 kids. Among boys, the burden is even higher: about one in 54.

"'While studying genes might help us identify diagnostic tests, which can make you a profit, it will not lead us towards preventing disease,' said Bruce Lanphear, an environmental health researcher at Simon Frasier University in British Columbia. He pointed to lung cancer as a case in point: All the genetic links in the world amount to little compared to the role of smoking cigarettes, and therefore encouraging people to abstain is medicine's single most effective response.

"It's also increasingly clear that genetics can't tell the whole story of autism. A Stanford University study of twins published last year found that genetics accounts for just 38 percent of the risk.

"'That analysis suggested that the assumption that this is mostly a genetic condition was perhaps made in error," said Diana Schendel, a scientist with the CDC's National Center on Birth Defects and Developmental Disabilities. "Maybe the environment plays a larger role in autism than we once believed.'"

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1) The fact that 1 in 88 are diagnosable with AS means there's a really, really good statistically likelihood that anyone who has a rare disorder like EDS (1 in 2,500 to 1 in 5,000) is also going to have AS.

2) Remember that not all connective tissue is collagen—EDS is a collagen disorder specifically. EDS is not considered a neural disorder, although the effects of having hypermobility can result in neurological problems.

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I agree Mark. I guess I meant the mental and cognitive problems with EDS were talked about a lot in many of the sessions and within that the autism spectrum disorders. They also linked to bipolar, depression etc because of brain changes that come with being in chronic pain, chiari, as well as other things but mentioned autism because of the symptoms tigerbomb mentioned above.

A few professionals voiced concerns that many children get diagnosed with an autism disorder and doctors attribute all the symptoms to autism and other conditions aren't looked at because now autism is so common(hear hoofbeats think horse). Also some EDS patients may have autism disorders but are overlooked because the symptoms could be from EDS or another related condition aka cranial instability etc. There was one lady in particular who discussed it, I think she was a mental health therapist and/or a PT/OT. She had a lot of interesting experience and i've wanted to contact her but have no idea her name. I thought also Dr. Tinkle said not to count on an autism diagnosis in a child of an EDS patient, to wait and see if symptoms persist as an adult because the symptoms may have just been EDS all along. Our versed medical professionals are aware that some are misdiagnosed with autism just like many of us are misdiagnosed with fibromyalgia etc. There aren't clear diagnostic criteria to always differentiate the diagnosis's, especially since each patient has a different set of signs/symptoms. Patients sometimes have several disorders but the signs of one are blamed for the other, it's up to the discretion of the doctor. Sadly most don't know enough about EDS to make a distinction, they think it's only joint related because of the 5 minutes they spent on it in med school. This is true of several of EDS's comorbid conditions that have overlapping symptoms.

Does anything suggest autism is a comorbid condition with EDS? Not enough evidence at this time, but it's known the overlapping symptoms can possibly teach us something about one or both of the disorders and some would like to study it more and set better guidelines. This is what I got out of the conference, excuse me if i'm wrong I get as brain fogged as anyone else and it's sometimes hard for me to explain. I just wanted to try to share my observations.

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A connection has been found between Chiari Malformation and EDS - the former being a type of neural tube defect - see Milhorat et. al paper concerning this. Connective tissue actually connects the two hemispheres of the brain. So, why would we assume that there is no benefit in studying the possibility of Asbergers or Autism being related to a connective tissue disorder? When my daughter was 4, her kindergarten teacher suggested she should get screened for autism. She was, didn't have it, but has a genius IQ. When she was 20, her cervical spine became unstable, leading the a brain herniation (Chiari malformation diagnosis, with EDS). I, for one, would be willing to put money behind very specific research on the relationship of EDS, neural tube defects, and AS.

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>>"My body is too complicated and I have too much wrong to distinctly say "this is from this, and that is from that". -etherealred

I just have to start saying this to myself. Right now I'm trying to tease apart EDS, high-functioning autism, and probably an intertwining attachment disorder, and that's mooore than difficult enough. I need to do SOME of it, since diagnosis does dictate treatment, but there's a line somewhere.

No wonder everybody's confused and overwhelmed.

"Clinical observations of the differences between children on the autism spectrum and those with attachment problems. Moran, Heather. Good Autism Practice (GAP), Volume 11, Number 2, October 2010" is not exactly what this thread is about, but I feel like it's relevant regarding nature v. nurture. 01
This person's blog has bizarre English, but summarizes the article. I haven't found a free source for the actual text yet. I thought it was interesting.

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To clarify: I dunno about you guys, but growing up sickly and misunderstood did help to screw me up. :P

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Oh, I'm positive that it screwed me up!

I think that a lifetime of being told I'm lazy, a complainer, a wimp, and a hypochondriac, not to mention being told it was all in my head, really took a toll on my ability to trust my own perceptions of reality. Being mocked by other kids for my clumsiness and odd appearance didn't exactly help my self-esteem. No wonder I have an anxiety disorder!

Finally getting diagnosed was great for my mental health. I still have a ton of issues though, which I'm currently trying to tease apart (with the help of a sympathetic psychologist).

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Hello! Our 13 year son, Daniel, has both Asperger's Syndrome and EDS - Hypermobility type. I don't see how someone could misdiagnose EDS as Asperger' just isn't feasible. HOWEVER, prior to Daniel having many subluxations and dislocations, I do believe that the Asperger's delayed his EDS diagnosis. Asperger kiddos are typically very intelligent and articulet. Additionally, they can have difficulty displaying "socially appropriate" emotional responses. In Daniel's case he has always been a very happy kid who could also get very emotional. Often people would think he was just being "wimpy" or overexaggerating when he said he was hurt because to the typical individual, it didn't seem as though he could really be hurt. Consequently, we now know that he truly was in a lot of pain...we just incorrectly assumed it was a manifestation of his Asperger's. I want to encourage everyone out there that diagnoses are just a means to an ends...they don't define who you are, but simply help provide pieces to the puzzle of how you "work." Not everything describing specific syndromes necessarily apply to every individual...just take what applies to you. Be proactive. No one knows your body like you do, and a syndrome doesn't define who you are. Daniel, is one of the most amazing people I know...he is our hero. ~Beth

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>>I think that a lifetime of being told I'm lazy, a complainer, a wimp, and a hypochondriac, not to mention being told it was all in my head, really took a toll on my ability to trust my own perceptions of reality. Being mocked by other kids for my clumsiness and odd appearance didn't exactly help my self-esteem. No wonder I have an anxiety disorder! -tigerbomb

This. A thousand times this. I hypervigilantly overanalyze every tiny thing, in some bizarre amalgamation of OCD/anxiety, poor innate social awareness (overcompensated for), possible autistic factors, but DEFINITE desire to "figure life out". Talk about inability to trust my own perceptions of reality.

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