Aspergers? / Autism

[trekster]

"So are some of the kids who have autism more likely to have hypermobility because it's part of that disorder? It maybe unlikely as that would hint that autism was present at birth, which as far as I know isn't the case. Just an upside down thought!"

There is a symptom present in ASD folk that could be linked with HMS 'low muscle tone'. It's a shame a campaign cant be made for those with low muscle tone to be tested at age 7 (unless symptoms are apparent enough before then) for HMS. Would save a number of our damaged joints and arthritis.

[Flora]

I work with adults with learning disabilities (intellectual impairment, not dyslexia etc) One of the people I have supported in the past had a condition that caused his learning disability, as well as severe epilepsy and autism. He is very hypermobile, but not HMS. If something hurt he would tell us, lots of times.... His Mum says that he showed clear signs of autism from birth, and that the hypermobility and the condition that causes his disability seem to run together in her family. I have wondered about a possible link for a while, specially seeing the tendency of people with down syndrome to have autistic traits and be clearly hypermobile, as others have mentioned.
flora

[Superstottie]

Flora (and the others), My son who is now coming up 3 and showing strong signs of being HM, showed very worrying signs of autism type when he was only a few weeks old. He would actively avoid eye contact and this went on until he was about 9 months old. He also lacked many social skills that he should have had at that age. They also tested him for Downs as he has many of the physical signs of this, the single palm crease, slanted eyes, flat facial features, ears signs etc etc. Of course this came back negative, but I have been thinking about the link between HMS, and other conditions like Downs etc as I was also speaking to someone who had her and her baby taken into a side room when he was born as they were convinced he was Downs, but has got HMS. I have also seen some photo's of a fellow bendy who was diagnosed at 2 weeks of age and you can see why they found out so young as she looks very very Downs in the pictures. I think there must be some sort of cross over between these conditions as they share so many physical and mental symptoms, and are often mistaken for each other.

As an aside, I also have a 10 year old who we have been convinced is on the Austistic spectrum since he was born, but the doctors have always dismissed our concerns and the only thing he has ever been diagnosed with is 'poor muscle tone'!!

[louloutinks]

Hi Supersottie

funny you should say about downs but my son has clynodactyly of the fifth fingers which is common in downs. He has EDS3,hypotonia and autism.

He also has a simian crease on his palm and highly criss cross markings too.

I spoke to researchers at Guys Hospital and they also said about HMS and autism being very commonplace.

[Omega]

Hi

Problem about ASD diagnostic screening is it depends solely on "descriptions" by parents who had observed Autistic behaviour and Clinicians (Psychiatrist) would provide an "assessment" (essentially a "dark age" method), without any diagnostic laboratory tests (as there are no diagnostic testing at the moment).

I have heard about an innovative ASD diagnostic machine developed at London teaching hospital a year or two years ago? I'm not sure if this was the first ever machine built for diagnosing ASD. I seem to recall another machine else where..

Going back to the main question, is ASD and HMS related or are they essentially the same thing? I can almost scream out that they ARE. They're talking about the same thing. I'm not sure if clinicians have already put two things together yet.

I also read that Chronic Fatigue Syndrome is also HSM. Some clinicians may say, you have HSM and you were misdiagnosed for CFS. CFS is definitely part of HSM to my mind (e.g. co-mobility). Many patients who suffer from CFS are hypermobile. There must be underlying pathology.

Sometimes, patients know far better as we have to live with the condition 24/7 or children who have the condition 24/7 and we are far more knowledgeable about our own body/mind etc whilst clinicians stop thinking about it after 6PM or even earlier and go home and start thinking about something else..

[Rosie]

Hi all

Omega, if I have read your post right, you are saying that ASD and HMS are the same thing? This really is not the case. and there is no proof or research to say this.
However, it is understood that there seems to be a higher rate of ASD among people with HMS than among those who don't have it.
Do remember that about 1 fifth of the UK population are hypermobile, so this would mean that you would expect at least a fifth of people with ASD to be hypermobile anyway.
It is also understood that HMS can 'set off' CFS/FMS, so you often find the two together. I am not saying that these conditions are nor connected, but they are not one and the same condition.

Rosie

[Omega]

Hi Rosie

Thank you for steering the thread very tactfully.

It would be reasonable to say that it probably takes literally ages for researchers to put "two things together" and I'm sure there are others who would vehemently dispute against results of any researches even if there were enough researches done. I think there is a huge difference between being clinicians and being patients. Patients live with this condition and know what our direct experiences are. Probably, there won't be any clinical consensus in these things in my time (but never say never lol) but parents whose children are affected by this condition as well as ASD at the same time (and of course, those who have ASD and Hypermobility),this sheer lack of clinical consensus won't stop them making observations and making their own mind about these things.

I have quite a few friends who have ASD and Hypermobility for example. At the same time, I have met people who are diagnosed with ASD based on parental observations who are not quite hypermobility.

Having said that, to be fair, if someone had hypermobility, it may be helpful to have more awareness that she or he may have ASD or develop Chronic fatigue, fibromyalgia etc as these are probably more common due to certain etiologies no one knows about although not everyone would get these. Until this is PROVEN NOT TO BE THE CASE, then we should have open mind about these things. After all, not much research is being done on this and clinicians don't know much about the subject. No one has a right to invalidate what we are discussing. I'm not saying what I'm saying is RIGHT or wrong. I'm making my own observations and discussing as to what my views are.

I struggled with my ASD all my life and I now have a confirmed diagnosis of Hypermobility. There ought to be more research in this area.
We all have intuitions and these are not validated by any researches but we have a right to discuss these things openly and hopefully, in the future, we get more answers to our questions on the basis of various researches which are yet to come.

[Omega]

http://www.patient.co.uk/doctor/Dysprax ... praxia.htm

This link mentions EDS, NF1, Aspergers (ASD) etc.
Not sure if there are better ones than this.

[trekster]

Omega im the same my issues concerning my chronic pain weren't taken seriously until i was 22 and then werent confirmed as hypermobility until 10 years later.

[Omega]

Hi trekster

Yes. Many of us do struggle finding a clinician who would take us seriously many years before we actually get a diagnosis. We will eventually find our way with our unusual persistence!! xx
I just found this link.
http://community.autism.org.uk/discussi ... ses?page=1

[cyberbarn]

Hi,

One of the things that researchers often say is what is the mechanism. For HMS there is a difference in collagen. ASD is a heterogenous neurological developmental disorder which means that it can be caused by many different things. This is the reason why they say if you know one person with ASD you know one person with ASD as they are all so different according to the different causes. So ASD and HMS are not the same thing.

One possibility is that the genetic variations that cause each thing are found on the same chromosome making the it appear that they are related. In fact, correlation is not causation. They may occur together, and there may be a reason why they occur in some people together, but that doesn't mean that they are the same thing or that they are even caused by the same thing.

The other problem with co-morbid conditions (conditions that appear together but are not the same thing) is that they affect each other. So a lax tendon can cause pain in a joint, but a neurological difference can affect the way that person deals with the pain because the pain actually happens inside the brain not in the joint itself.

Interestingly, neuroscientists are doing masses of research into ASD, but sadly very little of it filters down to people on the street. I don't think there is as much research into HMS, but I could be wrong. I have a cunning plan! I will report back later if I get anywhere with it!

Cheers,
Jennifer

[Omega]

Hi Jennifer

I wouldn't disagree with what you're saying.
Why? Because there is very limited amount of research which has ever been done over the topic so nobody knows for sure. I can say that I have friends who are high functioning Autism with EDS. Not just one or two. Several.

One thing you had missed what I said was, there are several genetic conditions which are known to be far more susceptible to Autism or ASD.

People who have ASD may be aware of what these conditions are. Sometimes EDS is included in this list but sometimes it isn't. Unfortunately, there aren't researchers who are interested enough to pursue this particular link, genetic susceptibility to ASD etc.

I hope this is better explained than before in my previous post. It's always Good to talk and raise more awareness in this particular subject.

Thank YOU ALL!! xxx

[Omega]

Interestingly, neuroscientists are doing masses of research into ASD, but sadly very little of it filters down to people on the street. I don't think there is as much research into HMS, but I could be wrong

Yes. There has been some research paper on "psychosocial aspect of EDS" which is well done but I don't see much else as regards to ASD and EDS as these clinicians working either in EDS or ASD rarely work together in setting up researches. However, there are some articles on genetic predispositions online which are very useful.

[notsparklynow]

Wow, lots of deep thinking going on in the last few posts!

Anyway, just to update you all - I do have a diagnosis now of Aspergers Syndrome. I'm not at all surprised. I can see so much of me in my son - he's like me but more so! All of the difficulties I have, he has but more so. All of the issues he has, I used to have, and some I still struggle with and others I have learnt to cope with. My word it's complicated isn't it???

All I do know is that some of my HMS symptoms are also ASD symptoms. I guess it's cos I am sensitive in many ways. One example is the sound sensitivity I have... due to the HMS I can hear every little annoying sound, but due to the ASD certain sounds literally make me scream as I can't mentally deal with hearing them! Sometimes I wish I could wear earmuffs to block out sounds I hate, but it's not exactly acceptable in my job!
I really think my daughter also has both but she has no diagnoses. She does have hypermobile joints and I'm giving her advice on how not to hyperextend them. She has also has a whole range of ASD traits for years but she's never totally met the criteria for a diagnosis.

I don't think there are easy answers for any of us. It seems quite clear that HMS and ASD are co-morbid (my psychologist told me they are as well) but at this point I don't think it will help anyone to try and deconstruct why as we are not medical researchers. It could make an interesting research topic for an academic though!

One thing I would really like is to contact some other adults who have Aspergers as I only know children that do. So if any of you would like to message me, that would be really great! (I know there are AS forums out there but they are scary for me so I'm sticking to what I know!) I'm just really super happy now that I know for definite that EVERYTHING I have problems with can be attributed to one of my conditions, so it's not just me being weird...

Anyway, like I say if anyone wants to chat, message me, that would be great.

Oh, and a belated Happy New Year!

All the best,
notsparkly (A Happy Bendy Aspie)

[trekster]

Welcome to the world of ASD with bendiness, loads of us seem to be here.

i can identify with the sound issues that you have, typing can hurt my ears sometimes and i can hear a few tvs on mute.
My mum has a more sensitive pair of ears though found 'dancing on ice' tonight ear piercing in places.