Double jointed thumbs

[Flora]

Both my boys have double jointed thumbs. They both have odd pencil grips (only possible becaues of the double jointed thumbs apparently) and absolutely awful handwriting. According to the optomotrist at the vision clinic we attended he told me that he sees this alot in children learning difficulties and/or ASD.

 

Does anybody elses kids have double jointed thumbs?

 

They can actually dislocate the join in their thumb without it hurting. It's fascinating but makes me feel

 

Lauren

[jb1964]

Lauren,

 

I don't think my daughter has double jointed thumbs - but you know the first joint on your fingers - she can bend those and click them exactly like you can with the lower joint. She does it all the time - it looks very strange and I know when she was younger all the kids used to ask her to do it (which made her feel so cool!!).

 

She also has a very odd pencil grip and is very flexible (but a strange kind of flexible if you know what I mean?) everywhere else - she very often sits on the settee or floor with her foot on her face or behind her head.

Edited March 3, 2006 by jb1964

[Kathryn]

Are your boys bendy in any other joints, Lauren? My daughter was recently dx with Ehlers Danlos (also known as hypermobility) syndrome. The collagen which holds muscles and bones together is weak, and this causes over extension of the joints - being able to put your hands flat on the floor and rotate your arm and leg joints more than normal is a sign. L can also bend her middle finger right back against the back of her hand. She also dislocates easily, and without pain.

 

There are different types of this condition, ballet dancers and acrobats often have it, unsurprisingly, but in some people it can cause severe pain and muscle fatigue. L has some pain and difficulty walking and tires easily. The physio says that is because her muscles are working harder to compensate. Apparently after puberty, everything should tighten up a bit.

 

There is some anecdotal evidence linking hypermobility to ASD: I haven't come across any research into this yet. The professionals L has seen definitely feel there is some link, from the cases they've seen.

[jb1964]

L can also bend her middle finger right back against the back of her hand.

 

Kathryn, my daughter can do this. Never heard of Ehlers Danlos (also known as hypermobility) syndrome - will have a look at that.

[Kathryn]

Kathryn, my daughter can do this. Never heard of Ehlers Danlos (also known as hypermobility) syndrome - will have a look at that.

 

Have a look at this link: http://www.hypermobility.org

 

and also

 

http://www.ednf.org/

 

for info on the two conditions. Some people think they are the same thing, others not. I'm still getting my head around it all. Coincidentally a friend of mine has ED in a more severe form - which is how we got to know about it.

 

K

[justamom]

K does not have double jointed thumbs but the OT said he had bendy fingers thats why he does not have a good grip on the pencil and holds it incorrectly....

[Tensing]

I have Hypermobility syndrome, though I'm no where near as bendy as I used to be.

[something vague]

Hi,

 

I have double jointed thumbs, I can pop my thumbs in and out of their sockets. Its a good party trick but as I've got older I find that my thimb joints get painfull when I have to grip something for long. Its such a shame because now I cant sweep my stairs with a hand brush or clean up the yard after our dog. Alas my husband has to do these tasks for me now

 

SV

[ceecee]

I am double jointed and i would suspect i have as tendancies.

 

Don't know if there is an actual medical name for it though i just thought i was double jointed.

[jayjay]

We have been told our son ASD has very bendy fingers and hands and he has terrible pencil control, we are under the occ therapist to help with this, also he has low muscle tone on the shoulders and hips and his core stability isnt good either

jayne xx

[lisa35]

We have been told our son ASD has very bendy fingers and hands and he has terrible pencil control, we are under the occ therapist to help with this, also he has low muscle tone on the shoulders and hips and his core stability isnt good either

jayne xx

 

My son is 10 and hypermobile, particularly his fingers and has insoles from appliances , he gets aches occasionally, we are in process of assesment -has mild autistic traits

Lisa

[jools]

G has hypermobile joints and low muscle tone.

he pops and clicks his fingers and thumbs all the time

he also has poor pen contol and handwriting and finds the process of writing tricky and painful

[Lynden]

Logan is 2.5 and autistic with hypotonia which is very low muscle tone but he has also extremely flexible joints - he's my little bendy man.

 

Lynne

[Zemanski]

lax muscles and over-flexible joints are a feature of dyspraxia and are associated strongly with ASCs

 

this is quite normal for AS people but not all have it - Nemo, Com and Nemo's little sister all have flexible joints, not just thumbs but they are the most obvious, I have particurlarly flexible toes but my thumbs and fingers are fairly stable. Dot is dyslexic and dyspraxic and the top joint on her index finger bends backwards which makes it very uncomfortable holding a pen.

 

Zemanski

[Flora]

zemanski.

 

You mentioned toes, my toes can bend both ways, and I can bend my fingers right back at the knuckle but I don't have double jointed thumbs.

 

I've noticed with William and Luke that apart from their thumbs, they can do things like wrap their legs around the back of their head, and Luke even bites his toe nails

 

Lauren

[littlenemo]

Com still bites his toenails at 13

All my fingers and toes bend equally both ways (L /J) at the last joint which does cause problems with writing and holding down buttons for any length.

The only advantage I've found is that if humans are defined by having opposable thumbs, then those of us with ultra-mobile thumbs must be super-human

[Flora]

The only advantage I've found is that if humans are defined by having opposable thumbs, then those of us with ultra-mobile thumbs must be super-human

 

nemo, thanks for that little gem William and Luke are going to have fun with that information. !!

 

Lauren

[ceecee]

As a child I was unable to do ballet dancing up on pointes as my toes completely bent in the middle particularly the second and third one.The dancing teacher said that as well as being extremely flexible and having a double jointed back my toes were also double jointed.Not very helpful for ballet.

 

I would suspect I have a.s. tendancies

[puffin]

I have hypermobile joints, so does my AS daughter and my NT daughter. I have heard that hypermobile children can have problems with pencil grips etc and it is worth experimenting with different types

 

Mine seem to be getting worse with age! Although most peoples tighten up

[DaisyFulkirk]

Have a look at this link: http://www.hypermobility.org

 

and also

 

http://www.ednf.org/

 

for info on the two conditions. Some people think they are the same thing, others not. I'm still getting my head around it all. Coincidentally a friend of mine has ED in a more severe form - which is how we got to know about it.

 

K

 

 

Kathryn

 

That's what I have!!!

 

I am only just in the process of getting a formal diagnosis (where have I heard this one before) but it's virtually certain that I've got it.

 

I saw something somewhere that said they thought there was a (genetic, I suppose) link between ASD and EDS.

 

My knees are very unstable when I stand up so walking is sore and very hard work.

 

The doctor told me that the fancy name for double jointed is 'hypermobile' because the joints aren't really 'double', at all, it's just the ligaments are too stretchy so they don't stop it from going backwards or bending more than it's meant to.

[Jill]

Thankyou! I was quite worried about The Boy's thumbs but feel much better now. When he holds your hand it feels odd & I noticed that the joint at the base of the thumb is extremely flexible and bends both ways. It doesn't trouble him in the slightest, but I was a bit worried just the same (you know what mums are like for worrying)

[Kathryn]

Kathryn

 

That's what I have!!!

 

I am only just in the process of getting a formal diagnosis (where have I heard this one before) but it's virtually certain that I've got it.

 

I saw something somewhere that said they thought there was a (genetic, I suppose) link between ASD and EDS.

 

My knees are very unstable when I stand up so walking is sore and very hard work.

 

The doctor told me that the fancy name for double jointed is 'hypermobile' because the joints aren't really 'double', at all, it's just the ligaments are too stretchy so they don't stop it from going backwards or bending more than it's meant to.

 

You have it too Daisy? That's really interesting. When did the signs first become apparent to you? My daughter, L says that her joints have always given her pain and she has always had difficulty walking. However we weren't aware of anything until a couple of years ago when she was about 15- she began to walk very unevenly and to complain constantly of soreness and tiredness. At first everyone attributed it all to the depression she was suffering from at the time, which made her very angry as she knew there was a physical cause. She's a lot happier now that others accept this. She's been seeing a physio who has given her a crutch for occasional use to try and balance her walking, and she's supposed to do exercises to strengthen her leg muscles.

 

Another symptom is skin that cuts and bruises easily, we have noticed that L has this too.

 

It's been suggested that the same chromosome is involved in ASD and EDS, but no real evidence yet.

 

L was diagnosed by a rheumatologist and has been referred (at her request!) to one of the leading specialists in the field- we are still waiting for that appointment.

 

K

[Tylers-mum]

Not sure about double jointed as wouldn't know what to look out for but T does have Poor Muscle Tone, Proprioception and Proximal Symphangalism which is basically fused bones in his ears, fingers, toes and his hips.

[DaisyFulkirk]

You have it too Daisy? That's really interesting. When did the signs first become apparent to you? <snip>

 

It's been suggested that the same chromosome is involved in ASD and EDS, but no real evidence yet.

 

L was diagnosed by a rheumatologist and has been referred (at her request!) to one of the leading specialists in the field- we are still waiting for that appointment.

 

K

 

I wasn't ever able to sit comfortably on the floor - either long-sitting where your legs are straight, or with crossed legs, right from when I started primary school - I can't remember from before then.

 

It wasn't too bad when I was younger, just little things until I was 12 when in a fairly short bit of time my right knee got very sore, very quickly - something like 6 weeks inbetween being able to run and it being too painful to stand or walk much. The GP said I had Chondromalacia Patellae and I was put on anti-inflammatory drugs, which did nothing at all to help. Then I had physiotherapy (repeating exercises like doing 5 leg bends) for ages, which was really horrible and caused a lot of pain, and I was on crutches. It slowly got a bit better, I had lots of Alexander Technique lessons which helped me to be more comfortable standing up, and lots of osteopath visits which didn't really help but were quite nice and relaxing anyway. Then I saw a paediatrician and a paediatric rheumatologist together who said that I had quite severe Lumbar Lordosis which means my back is curvier than it is meant to be, and that I was overweight (like I needed them to point that out) and that I was a Chronic Pain patient. That must have been when I was 14 or something like that, nobody mentioned Ehlers Danlos or the fact that I am very hypermobile. I went to see an orthopaedic surgeon a lot then too but I think she thought I was a 'malingerer' and she wasn't very helpful.

 

By the time I was 15 I was walking better again but lopsided with a limp because my knee hurt less if I held it mostly straight, and then three years ago it got worse again and sore in more joints when I left home and had to walk everywhere and not get lifts or anything and I started using a stick all the time instead of just sometimes, and now I use a manual wheelchair mostly - my back and shoulders are not as sore as my hips and knees and I am very good in my chair - I can go fast and keep up with everyone else. It was about two months ago that I first heard of Ehlers Danlos and my GP here referred me to a rheumatologist who I saw privately and he is referring me to a specialist in Leeds who knows more about Ehlers Danlos than he, the rheumatologist does.

 

I have been doing lots of reading and looking-up on Ehlers Danlos and I 'fit' the description very closely - my ankles go sideways if I stand up without boots on and my hips do weird things sometimes.

 

A bit like my autism really, I wish they had realised earlier, it would have saved so much trouble! I have also had the psychological 'implications' thing, it's horrible, I wish doctors would keep their big mouths shut if they have suspicions like that while they're still in the finding-out stage, its so cruel and makes you feel so rubbish if you are trying to get a doctor to talk to you about your sore hips and they are only interested in your 'feelings' and if you get on with your mum and dad.

 

And yeah... I always want to say well you would be depressed too if you had been hurting for 9 years without stopping and half the people you talked to assumed you were making it up.

[Kathryn]

Daisy,

 

Sorry I missed your last post somehow. Your last comments about the attitude of doctors could have come from my daughter's own lips. What made it all the more frustrating for her last year was her difficulty in speaking, so she was unable to explain exactly how she felt when the professionals were getting it wrong all the time.

 

Interesting to hear that your symptoms became more apparent in puberty. The rheumatologist told us this is quite common in girls with EDS.

 

Do you take any pain relief, or do you have other ways of managing it, if you don't mind me asking? I've read that amytripteline is often prescribed to alleviate pain. Coincidentally, L was on this for depression but she says it didn't have any effect on her pain. Sometimes she takes ibuprofen if she's really uncomfortable.

 

My daughter is determined that her difficulties won't stop her from doing what she wants to do. Sometimes I worry about her future, so stories like yours are an inspiration - thank you.

 

K

[Beebee]

Hi

I found your post really interesting as for some time i have wondered about the connection between ASD and 'double jointed thumbs' in particular.?!

 

From a professional point of view, the last three Autistic children i have worked with, have all had double jointed thumbs - the last child's being quite noticeable.!!

 

From a parent's point of view, my own son (Dx AS), had also previously been diagnosed with 'double jointed hips, knees and ankles' and until this time i had not really connected the two things.

 

From everyone's post it would seem that it is most likely down to 'hypermobility'. This is interesting to note as it does help to know this, when it comes down to teaching pencil control and the reason's as to why some autistic childen struggle with their pencil grip and handwriting.!

 

Bee

[trekster]

I am double jointed and i would suspect i have as tendancies.

 

Don't know if there is an actual medical name for it though i just thought i was double jointed. <img src="http://www.asd-forum.org.uk/forum/public/style_emoticons/<#EMO_DIR#>/rolleyes.gif" style="vertical-align:middle" emoid="" border="0" alt="rolleyes.gif" /> <img src="http://www.asd-forum.org.uk/forum/style_emoticons/<#EMO_DIR#>/rolleyes.gif" style="vertical-align:middle" emoid="" border="0" alt="rolleyes.gif" />

 

Double jointed without pain or other symptoms is just that double jointed. But double jointed with pain and or other symptoms is hypermobility syndrome or EDS.

 

I got my diagnosis last August and I dont beleive my joints have gotten better as i've got older in fact they have become more bendy.

I've gone from 4 years ago to having an ankle that went over when I crouched down to having all my joints except my back being bendy.

Now I need a wheelchair for anything further than 28 metres.

 

There are a lot of autistic bendies on the HMSA forums.

[trekster]

Thankyou! I was quite worried about The Boy's thumbs but feel much better now. When he holds your hand it feels odd & I noticed that the joint at the base of the thumb is extremely flexible and bends both ways. It doesn't trouble him in the slightest, but I was a bit worried just the same (you know what mums are like for worrying)

 

Does it feel like a bag of bones when you shake it?

[Tally]

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