Here’s the view from the back of my hands, where they look like rings:

And here’s the view from the palms of my hands, where you can see how they connect together:

What’s the point of this?

Among other things, handwriting can often be difficult for people who have joint hypermobility. (Here’s the webpage of the hypermobility syndrome association.) That’s when joints bend further than they normally do. The most common cause is benign joint hypermobility syndrome (my diagnosis) which is extremely common, especially among women, and it runs in my family. But there are also several rarer syndromes like Marfan’s and Ehlers-Danlos that have it as one of their traits (and there’s some debate as to whether BJHS is a very mild version of one of those or something separate). A lot of people don’t know they have it unless they have an extremely severe form, although even some people with the rarer and more severe problems don’t get diagnosed easily. There’s a fairly easy way to test yourself to see if you should get checked out for it, which is this test (in which I get either a 7 or 8 out of 9 — but be aware it’s possible to do it wrong if you have perceptual problems, the first time I saw such a test I thought I scored lower than a doctor and PT scored me as; also be aware that if you have various other symptoms (especially widespread joint pain or dislocations), or if a close relative does, you can still sometimes be diagnosed with BJHS with a score between 1 and 3, so best to check with someone who knows what they’re doing.

I don’t know if it’s true or not that autistic people are more likely to have loose joints like this. Tony Attwood claims it is (note that when he says “Asperger’s” he’s often including examples of other autistic people without that label):

One of the movement disturbances associated with Asperger’s syndrome is lax joints (Tantam, Evered and Hersov 1990). We do not know if this is a structural abnormality or due to low muscle tone, but the autobiography of David Miedzianik describes how:

At infant school I can seem to remember playing a lot of games and them learning us to write. They used to tell me off a lot for holding my pen wrong at infant and primary school. I still don’t hold my pen very good to this day, so my handwriting has never been good. I think a lot of the reason why I hold my pen badly is that the joints of my finger tips are double jointed and I can bend my fingers right back. (Miedzianik 1986, p. 4)

Should problems occur from lax joints or immature or unusual grasp, then the child may be referred to an occupational therapist or physiotherapist for assessment and remedial activities. This should be a priority with a young child, since so much school work requires the use of a pencil or pen.

(That’s from page 263 of The Complete Guide to Asperger’s Syndrome by Tony Attwood.)

So, I’d always thought I was “just” dysgraphic in school. I was always having my grip corrected and my only way to produce neat handwriting was to eventually learn to ignore severe pain in my hand. I had one set of people try to help me grip it better in elementary school, and another set of people while I was in college, but nobody did an assessment of my flexibility levels. Then after diagnosis with hypermobility last year, all this stuff started to make sense.

So, what these splints do, is they make it impossible for joints to hyperextend (extend beyond their normal limits), or at least to do so very much. Here’s my finger being bent without a splint:

And here’s the same finger being bent with the same amount of force, but with a splint:

You can see that in one picture the joint bends backwards a lot and in the other one it doesn’t.

This also makes a difference in handwriting. Here’s one of my versions of a grip on a pen without a splint (sometimes I use 3 fingers to stabilize things, sometimes 2, but same result):

It hurts just to hold a pen like that for less than a minute.

And here’s my grip on a pen with the splint:

So there’s a big difference there.

And the difference it’s making for me is less pain while handwriting, less pain while typing, less pain in general. The actual bending itself doesn’t directly cause the pain. What does cause pain is the constantly having to press harder and further on everything because if I press more lightly my fingers just bend back instead of accomplishing whatever they’re supposed to accomplish. (This is why people with hypermobile fingers are usually slower at playing certain musical instruments, there’s a finite rate at which we can press because it takes us longer.) And having them bent backwards like that in the long term doesn’t do any favors to my joints either.

Which is why I’d say, if your kid is having trouble with handwriting, please get them checked for this. I’ve talked to way too many people who are parents, or who know parents, with kids with handwriting problems, and I ask if the kids are super-flexible, and they say yes. But they rarely connect the two on their own, and neither do the schools.

I wish I’d had them when I was seven years old and struggling to handwrite only to be accused of not trying when my hand gave out, and having even my odd (they called it ‘immature’) grip seen as a behavioral problem rather than a physical one. I really believed that ‘not trying’ thing, too, since I had no sense of what was and wasn’t normal pain-wise. So I eventually learned to ‘try’, which meant, mask pain to the best of my ability and keep writing, and I finally got neat handwriting five or six years later (and in fact got so skilled I could write in several different handwritings, forwards and backwards, because of how hard I was working). But that hasn’t entirely lasted as I’ve gotten more body awareness than I used to have, as well as more of a sense of how much pain is too much to ignore.

When I tried handwriting in the occupational therapist’s office today, I kept waiting for the pain and it didn’t happen. I’m not sure thumb-related pain will fully go away (see below), but I didn’t experience it today. And I certainly didn’t experience the general hand pain I normally do that probably comes from stress on the things that do all the moving things in the joints (I don’t know all the words for these things).

Here are the splints off my fingers by the way:

The big one with the chain attached is a thumb splint. The other two are two kinds of finger splints: One to prevent mild-moderate hyperextension and the other — the one with the little round spacer thing in between the two rings — to prevent severe hyperextension. I’ve got the mild-moderate ones on my pinkies and middle fingers, and the severe ones on my pointer and ring fingers.

The one thing the occupational therapist said these things could not do, is fully stabilize the base of my thumbs, or stabilize at all the base of my pointer fingers, which are my two loosest sets of fingers. She said it’s just not capable of that level of support and I’ll have to try something else if I want more support than I’ve got on those.

I’ve also got less pain typing. Normally there’s a sort of sharp pain that starts in my wrists or hands and shoots into my fingers, very similar to what walking without ankle braces does to my legs. And that’s gone as well as far as I can tell.

Anyway, what I was thinking when I got these, is they should do all assistive technology this way. These aren’t just functional, they’re also pretty. (And for people who can afford it, they even make versions with stones set in them and stuff.) A lot of assistive technology gets hung up on looking like it crawled out of a hospital or something. These splints are taken by most people as just jewelry. (I’ve been wearing the pinky ones for a month now while waiting for the rest to be resized.) My mom said when I got these I’d end up looking like a hippie, but oh well, it wouldn’t be the first time. :)

I know there’s been some progress in making other assistive technology attractive, but it hasn’t come as far as these splints have for the most part.

(To find people who make splints like these, there’s Silver Ring Splints in America and Silver Splints in Scandinavia, the Netherlands, and apparently the rest of Europe too. There’s also a plastic kind that are cheaper but also less comfortable and don’t fit as well, and then another plastic kind that’s custom-made that I saw on a mother’s blog for a hypermobile kid who had cute little multicolored and obviously customized plastic ones. I’ve also heard that you can replace the bracelets that hold the thumb splints on with your own custom ones, so I’m thinking about doing that. Also, many of these companies will also make them in gold if you’re allergic to silver.)

The interesting thing to me, also, is that assistive technology likely to be used by non-disabled people (which is to say, most assistive technology, of the sort that isn’t normally singled out as assistive even though it is) is often already made with aesthetic considerations in mind, whereas assistive technology for disabled people (the kind that is normally singled out as assistive) generally isn’t. Since, of course, assistive technology primarily used by non-disabled people isn’t singled out as medical, and since, of course, medical seems to mean uncomfortable and ugly a lot of the time when it comes to equipment.

And, basically, if you have the means to get any splint that works this way for you or someone you know who needs it, you should try. It has been worth both the wait (since February, and a longer wait than usual because I had to send most of them back to the company for resizing) and the hassle. I’ve been letting anyone know who seems to have hypermobile joints (which is a lot of women I run into and a few guys, including a staff person who described getting out of class in high school by popping his thumb out and claiming it was broken), almost all have been interested, and almost none have ever heard of this as a potential cause for their joint problems or handwriting problems. Same with parents I talk to whose kids have this problem, they’ve often never heard of it (or of any solutions for it) even if the school is kicking up a major fuss over things like handwriting and even if the kid is really obviously flexible. So anyone who might run into someone in this situation, keep that in the back of your head, because doing something about it can save a lot of headaches (or, I guess, hand-aches).