Bendiness and Neurodiversity

[davidgillon]

I had lunch with a friend who had seen my mention on FB of doing the Living with HMS/EDS thing for DiversifYA, and in the course of chatting about it mentioned the fellow bendies I'd met at Worldcon. That got us talking about the fact all of us weren't just bendy, but neurodiverse* even though there's no documented link and she made an interesting point (well I thought it was interesting anyway).
 
She'd asked me how common HMS/EDS is, I'm not sure what the figure for HMS, but I've seen 1 in 2500 to one in 5000 suggested as the incidence for EDS, which on a UK population of 60 million suggests around 12-24,000 UK bendies. My friend has Post Polio, and commented the UK Post Polio population is about 120,000, so 5 to 10 times the size of the EDS population (this surprised me, I'd have guessed the two populations at about the same), and just as with EDS, the Post Polio peeps suspect there are a bunch of co-morbid conditions, but even with the much larger patient population no one has actually sat down to confirm the links. So if it hasn't happened with PPS, maybe it's no surprise it hasn't happened with EDS.

* And those are by no means all the neurodiverse bendies I know, I'm actually struggling to think of any bendies I know who aren't neurodiverse, and most of those are queer too...

In other bendy news, wearing an AFO seems to work just as well as the Camwalker in managing my ankle, which is randomly unhappy again, and with the bonus of not inducing a two or three inch leg-length discrepancy, which makes my pelvis happy...

Comments

[davidgillon]

For the Worldcon group it was, IIRC, two Autism + 1 Autism Spectrum + me. I'm not formally diagnosed, but my pain management psych spontaneously started trying to figure out if I had Aspergers in the middle of the pain management assessment. He wouldn't commit to a diagnosis (not his speciality) and tells me there's no point trying to take it further as the local autism service is 10 times oversubscribed with referrals. OTOH I do also qualify via being dyspraxic - and I know other dyspraxic bendies.

The incidence of people I know with both Autism Spectrum conditions and HMS, or dyspraxia and HMS strikes me as unlikely. I'm active enough online WRT to disability I'd expect to know bendies, I'd expect to know people with neurodiversity, I just wouldn't expect them to be the same people ;)

[sfred]

Then I think most, but by no means all, of the people I know with HMS are neurotypical (with a higher incidence of mental health issues than average, but that's true of disabled people in general and of queer people in general).