Joined: 6 Jul 2012
Recently, a study was done about brain structure of patients with Ehlers-Danlos syndrome. A condition that causes hyper-mobile joints, and skin elasticity. I noticed this while reading the article:
"Differences in the structural integrity of temporal and parietal cortices may underlie wider behavioural phenotypical expression of hypermobility: abnormalities in superior temporal cortex are also seen in autism.11 Inferior parietal cortex can affect proprioceptive awareness and hypermobility is itself linked to dyspraxia.1 Our findings suggest that processes compromising function in neuro-developmental conditions may occur in individuals with hypermobility, putatively enhancing vulnerability to stress and anxiety."
As someone with EDS, I wonder if Hyper-mobility is overrepresented in the Autistic community?
You can read the article here:
Severe Tourette's With OCD Features.
Reconsidering ASD, I might just be NVLD.
Joined: 30 Aug 2012
Location: Athens, Greece
I was thinking about that. I haven't seen this study but I made this post recently here
I am not a doctor (I study Literature), but I believe that there might be a connection between autism and some connective tissue disorders such as Joint Hypermobility Syndrome, Ehlers-Danlos Syndrome or even Marfan Syndrome.
Accoding to all online tests Ι'm either Autistic or in the Broader Autism Phenotype. I've been self diagnosed with Asperger's Syndrome. I might try to get an official diagnosis in the future but I don't think that I need it right now.
I have lax joints and somewhat hyperextensible skin. Here are some pictures from people who have Joint Hypermobility Syndrome or Hypermobile Ehlers Danlos..
I can do all these with the exception of the last two, luckily for me.
I also have elongated arms and fingers but not that elongated as some individuals with Marfan Syndrome have: http://heart.bmj.com/content/88/1/97/F2.large.jpg
I also find interesting that Ehlers-Danlos and Autism share some comorbidities like Irritable Bowel Syndrome, Sensory Integration Disorder, Anxiety Disorders etc
Here is a study, first published in 7 June 2005 about the "psychosocial functioning in the Ehlers Danlos Syndrome"
This is interesting: "Over half of the adults (56%) had been in outpatient psychotherapy some time during their lives, typically
for depression/anxiety and relationship difficulties; 22 (54%) reported a history of at least one episode of significant depression, 19 (46%) had used either antidepressant or anxiolytic medication. Three adults had been hospitalized for psychiatric difficulties; 2 of whom had attempted suicide. Five patients reported a history of alcohol or illicit drug dependence and treatment. In all, 29 adults (71%) had received some psychiatric service (medication or therapy) at some point in their lives."
However, the same study says: "It should be noted that our psychiatric observations do not suggest any clinical association with autism, as has been suggested [Sieg, 1992; Tantam et al., 1990]"
Here are the two mentioned studies that suggested a possible link between Ehlers-Danlos or other connective tissue disorders with autism
http://www.ncbi.nlm.nih.gov/pubmed/1537777 (this one isn't online so I haven't read it)
I have to note that: 1) hypermobility of some joints doesn't mean necessarily that someone has a connective tissue disorder (I am not even sure for myself, even though I think I meet the basic criteria) 2) joint hypermobility is found mainly in females whereas autism has a higher prevalence in males.. (I am a male myself)
Flexible joints are also found in Fragile X Syndrome or even Down Syndrome. Many individuals with Fragile X Syndrome are autistic. (Approximately 2-6 percent of children with autism are diagnosed with FXS) And a small percentage of those with Down Syndrome show autistic traits, but in these cases there's also some short of mental "retardation".
Joined: 22 Jan 2008
Location: SoCal US
I am sorry you are struggling with EDS.
Thank you for posting that link. That was an interesting article.
Is it over-represented in the autistic community? I would think, from what I've read and what I know of EDS and what it tends to run with genetically, that's not the only thing that would be over-represented...given that the list of things that run with EDS are pretty uncommon.
Ehler-Danlos also tends to occur with other rare diseases. Chiari (cerebellum) malformation is one. According to the book "The Neurology of Autism" this is something that also occurs more often in autistics, and in autistics affects speech development and use. The temporal lobe function they were speaking of in the article would affect speech as well (that was also mentioned in that book...it's a good book). Chiari can also cause a spinal cord disease called syringomyelia(SM) although SM can develop without chiari always being the cause. Chiari is a neural tube defect...something people are born with. All 4 conditions (including autism) may have genes or a chromosome in common, at least sometimes?
I am a member of an online community for people with chiari and SM, and many of those people also have EDS. Every once in awhile somebody will strike me as possibly being somewhere on the spectrum. It's probably the opposite of your question...autism might be over-represented in that otherwise NT community?
I don't have EDS that I know of but I have temporal lobe wierdness, a mild chiari malformation, and mild SM. If any of my buddies in that other group have had tests showing any sort of (autistic?) temporal lobe slowing like mine, they haven't mentioned it. Maybe I should ask?
Joined: 4 Apr 2012
Location: The long-lost library at Alexandria
All of this is incredibly enlightening, and intriguing.
I have all the symptoms (to a textbook case) of the classic hypermobility type of Ehler's Danlos, but I haven't been diagnosed (parents didn't go to doctors when I was a kid).
I'm wondering if I need to get it checked out. And now the possibility that it can correlate with Autism? That puts a lot into perspective.
How did you guys get diagnosed? Was it expensive? Did you benefit from it, or not? I'm seriously considering getting my symptoms looked at, especially since everything keeps subluxing at the most inappropriate times...it's getting worse.
I actually would really like some advice if anyone wants to PM me.
Joined: 2 Feb 2009
I have severe EDS. I have the Classical Type but I actually have a deletion which was found on a research test so I don't know what the exact gene is. I have not been adequately tested for Chiari/SM but my geneticist believes I have it.
I was diagnosed at Yale. It wasn't expensive...insurance covered everything except my copay. Because my case was so unusual, I traveled from CT to Baltimore to see an EDS specialist...my insurance actually had her in-network so I only had to pay my copay but there were substantial travel costs.
If you think you have EDS, contact EDNF ( www.ednf.org ) and they will help you.
You can also PM me...don't be shy!
Joined: 6 Jul 2012
I have Type 2, extremely soft skin, my bones move around so much that I dislocate ribs in my sleep sometimes. I can't do so much as wash dishes without my fingers subluxing. I was Dxd at Mayo Clinic in Rochester. It was thought that I had Marfan's Syndrome because I have a marfanoid habitus. (My Armspan/height ratio is 1.05)
I still don't consider myself to be severe because I know too many people with the condition who are now in electric wheelchairs.
Severe Tourette's With OCD Features.
Reconsidering ASD, I might just be NVLD.
Joined: 24 Jan 2012
Joined: 10 May 2005
I'm getting evaluated in November at Vanderbilt for EDS/hypermobility by a geneticist.
I seem to only get a 2/9 on the Beighton scale (can only touch my thumbs to my forearm), but also my tongue can touch the tip of my nose (and snake back into the nasopharynx), I'm pretty nearsighted, my skin is hyperelastic, and I sublux often (most commonly my knees).
Joined: 23 Dec 2014
Few things to note before reading my opinion and observations (that is all that they are, nothing scientific at this point) :
1. I am an undiagnosed (Remedial Massage Therapist) Hypermobile. I have hyperextensible joints in my fingers, elbows, shoulders, hips, knees (especially, I can turn my leg to face my foot backwards whilst keeping my hips forward), pronating ankles and flat feet. The elastic skin is a fantastic party trick.
I have strength-trained since adolescence without realising the major benefit this has given me - contributing to joint stability. (Running hurt, squats made me feel better. Ergo, more weight training. Martial arts taught me to NEVER lock anything out - the luck in which I have had is almost miraculous for looking after EDS Classical
My mother brought me up on Buddhism than Christianity. Whilst I am no longer a practicing buddhist, the meditation I learnt in the course of Buddhism enables me to deal with my anxiety, if I practice consistently. I meditate to calm, bring my heart rate down and encourage my body to relax - this helps with my pain. I am very lucky.
2. My mother is also hypermobile (undiagnosed, high Beighton Score) with a history of pain and subluxation.
3. My Brother has been diagnosed with Low Functioning Autism, Dyspraxia and Hypermobility.
4. My sister has diagnosed anxiety issues. (Admittedly, we think from growing up with my Brother.)
As a therapist, I began to notice the hypermobility in the parents of children with autism. I questioned their parent's hypermobility issues and whether they can perform their own version of the Beighton Score on their children and parents. There is often a mid to high score throughout the family. It's becoming a noticeable coincidence to the point that I am often called "mind reader" in our first appointment - from the correct guesswork I make about their family members.
My partner and I have had our (his) nephew diagnosed with hypermobility with developmental delay and speech issues. My Sister-in-law, mother to our nephew, also has hypermobility. My partner does, but to a lesser extent.
I love my brother, but it makes me wary to have children until further studies have been conducted. If my child has further hypermobility than I do, I would not want that for them. No broken bones despite the accidents that childhood brings (upside of my hypermobility) but just consistent pain (downside). If my child has low-functioning autism, neither would I wish that for them.
Please don't misunderstand, I love my brother and he is a gorgeous boy - but all that others see is the autism. He doesn't understand social norms and acceptability - now we can barely take him to the shopping centre or beach for fear of incorrect touching or questioning. He's 16 yrs old, 6ft 1 with the strength to match, with the mind of a 3 yr old. High functioning autism can be amazing - low functioning seems to lock them in a world where they can watch but lack the tools to participate. He loves everyone, and sadly this is a part of the issue.
Genetic testing and the perceived relevance of testing for hypermobility in adults is just not considered pertinent here in Australia. I think I may need to travel to the U.S. or UK.
Joined: 27 Oct 2010
Location: Washington, USA
I posted a similar topic recently.
I have hypermobility too and have suspected I have EDS-III. I am going to try to get a test for it soon and have had several injuries from my hypermobility. I also have been diagnosed with arthritis, sleep apnea and gerd, all which I heard are common for people with eds. Lot of genes can cause multiple symptoms and I suspect this is a common cause for the co-morbid hypermobility and neurological symptoms that seem so frequent.
Joined: 12 Feb 2012
Joined: 22 May 2014
Joined: 20 Dec 2015
Location: United States
Joined: 3 Jul 2010
|anyone else here with ehlers-danlos syndrome?||
04 Jan 2014, 5:58 pm
|Ehlers-Danlos Syndrome (mild)?||
23 Mar 2014, 6:35 pm
|Ehlers-Danlos Syndrome Type 3||
29 Sep 2012, 8:11 pm
|Autism Speaks Undercuts Autism Health Insurance Reform?||
08 Aug 2010, 8:42 am