5:30am January 9, 2015

I’ve started falling again. Only it’s different than the falling before, as I remember it. It feels different. Can’t explain why.  Have a theory, but want to ask you guys.  I’ve tried to control the size of this post which was spiralling out of control, in two ways:  Putting a lot of information in footnotes, and also having a TL;DR summary at the end just before the footnote zone (the whole TL;DR section is bolded like this.)

What happens is i just go off balance. One staff person who witnessed a full-fledged fall (about 8 out of 10 times I’m able to aim my body at a wall or tall furniture or grab onto furniture, although sometimes those falls are worse than hitting the ground because I get poked hard by various things like doorknobs)… she said it looked like my butt went one way and my torso went the other and the result was me crashing to the ground in an alarmingly loud way.

So I don’t think it’s a muscle weakness thing, it’s not myasthenia, or if it is, it’s myasthenia combined with something else more prominent. It also doesn’t seem to be the result of adrenal insufficiency Myasthenia and adrenal insufficiency are of course my first go-to diagnoses when I wonder what’s going wrong. But if they contribute anything at all, it’s not the main contribution.

Here’s the weirdest part:

At night, I go around the house in the dark. I have a few nightlights on for safety (and have ordered more, because I really don’t have enough). But I’m confident I could get around with no light at all if I had to. I’m pretty good at doing without light, as sighted people go.

Anyway, so. I never, ever fall in the dark. I don’t even get wobbly or any of the other things that seem to go along with this. In the dark, I’m fine. It’s when there’s light that I start falling.

And it’s alarming everyone around me, the people who catch me in mid-air, the people who help me off the ground, the people who see this stuff.

Oh and the other thing that happens to me a lot is that I’ll bash half of my body into the side of a doorway when I go through.And I wo'nt otice anything wrong until i’ve painfully whammed into a wall or door frame or other thing like that.

My only theory about the dark thing:

What if my senses are in conflict?

We know my vision sucks. Well, my corrected vision is technically in the goodrange, as far as acuity goes. But my visual perception sucks donkey balls. Something somewhere in my brain has been going wrong when it comes to vision, for my entire life. My earliest memories involve vision only as a thing to see interesting patterns and splotches through. Looking at the forest floor, looking at the sparks you see when you blink or rub our eyes a lot, vibrating my head with my tongue to watch the whole world shake… these rwhat I did with vision initially. It was a backup sense, and not a reliable one. That’s stil true, actually, but it’s gotten better over the years.(1)

Tell me again why I’m supposed to believe that hyper/hyposensitivities and maybe, maybe white noise are the only things autistic people should be talking about in terms of sensory issues? My vision fragments, distorts, turns the entire world into pixels rendering me functionally blind, I’m sure I have several kinds of developmental dysgnosia or agnosia, and very few autistic people are talking about this. Except for severely disabled FC users who get written off as not counting because they type with assistance.

Or for Donna Williams and Jim Sinclair, both of whom have severe visual-perceptual problems like mine, and both of whom are written off because they were targets of extremeely ugly bullying, stalking, and harassment campaigns to “unmask” the idea that they were not really autistic. One of the people involved in slandering Jim Sinclair had testified under oath that Jim was autistic, in another context. That’s how weird the bullying campaigns get against self-advocates.

Anyway.  So what my theory is, is that my eyes are telling me one thing about the world, and my body is telling me something completely different about the world.  Some of my strongest senses, when allowed to be strong at any rate, are the ones that get you labeled a kinesthetic learner (as opposed to auditory or visual).  I’m also heavily olfactory, but nobody ever thinks you can learn anything by smell, even though studies have started to come out in the last couple decades, showing we pick up and use a lot of information with our noses that we’re not even aware of, and that it is a bigger part of our image of the world than most people imagine it is.

I’m also synesthetic, both perceptual and conceptual, and both the kind where the colors etc. are in your head, and the kind where they’re projected into the real world.  Also I have a kind of synesthesia that’s different than the kind Richard Cytowic defined and wrote the criteria for.  But on a synesthesia mailing list ages ago, and in conversatons with other auties, it seems to be more common than people expect.  

Normal synesthesia, the same stimulus in one sense always, always produces the same stimulus coming out in another sense.  That kind of synesthesia is always memorable and ‘feels important’.  And it’s always… let’s say it’s visual synesthesia — the shapes are going to be like lines and blobs, it’s never going to be a painting by Rembrandt   I have this kind of normal synesthesia and I understand what’s meant by all the criteria.  Cytowic was just trying to differentiate synesthesia from other experiences, such as hallucinating music or something.

However.

Autistic people, when sufficiently overloaded, will often experience a different kind of synesthesia (I think it can be called synesthesia, just like drug-induced synesthesia is still synesthesi even if it doesn’t match the Cytowic criteria..  i call it “sensory bleed-over”.  Where you’re just so overloaded that somehow your brain starts spitting out random stimuli.  Generally the stimuli that come back to you in the end, are the lines and blobs kind, just like normal synesthesia.  But the lines and blobs can be different shapes and colors every time.  And I experience a lot of this bleed-over a lot of the time, in pretty much all my senses.  

So there’s that, too.

Anyway, my theory as to what’s going on is a what, but not a why.

It’s that my eyes and brain are saying my body is in one place based on vision, and my physical kinesthetic senses are telling me that my body is somewhere quite different than where my eyes think it should go. 

I don’t know to what extent autistic catatonia plays a role either — autistic people with catatonia have written to researchers asking them to explore the sensory side of this condition (and there is a huge seensory side, for many people I’ve talked to, including myself).  But so far no researcher has bit on the line we cast out there.  Probably because sensory issues are hard to measure, hard to quantify, hard to classify, and often rely on communication from a group of people who, especially with severe catatonia, may be impossible to communicate with in words.  So then you need ways to measure sensory issues or stress through means other than communication through words, and few people can even imagine how to do that  (2)

.Can anyone think of what else this might be?  My reason for suspecting a clash between vision and kinesthesia (3) is that when it’s dark, the problem goes away.  I don’t think that would happen if vision wasn’t involved somehow.  But there’s other things that make this seem unlikely.  So … I don’t know?  Does anyone else have any ida what could be causing this?  I’m seeing my doctor tomorrow and will talk t him about it, but I also prefer to hear from people who’ve experienced it themselves, or something similar, and can point me in the right direction.

________________________

(1) My description of my visual processing got way too long for a post about falling, so almost all further details about my visual processing will be found here, in footnote-zone.  I’ve left this in, largely in case other autistic people, or even parents, haven’t heard these things before, and might want to know about them.

My psychiatrist wrote something in my records lik,e “Amanda plays with her perceptual abnormalities the way other children play with toys.”  And he was right.

(2) Although I did help a researcher figure out how to set up a similar sort of study, on stress and empathy in nonspeaking or language-impaired autistic people… I hope one day she uses my design, because it’s never been done before.  So it may be that similar techniques could be used to measure aspects of sensory perception.  I just don’t know enough of the science or have the skills to make that sort of thing.

(3)  Kinesthesia or kinaesthesia has been used to mean many things, but here I’m using it in the sense of the combination of proprioception and vestibular senses that tell us where our body is in space, and in relation to itself. I like the word because it doesn’t require me to differentiate between body sensations that are already pretty well blended together, at least for me.

#falling  #chronic illness  #actuallyautistic  #visual perception  #vision  #kinesthesia  #kinesthetic perception  #nighttime  #I never fall if it's dark  #I never fall in the dark  #I only fall when there's a light on or the sun is coming through the window  #myasthenia  #myasthenia gravis  #adrenal insufficiency  #secondary adrenal insufficiency  #fall  #falls  #ouch  #falling hurts  #seriously falling sucks  #I used to fall more often than this  #but it doen't make this good 

1. madeofpatterns reblogged this from withasmoothroundstone and added:

   are seizures triggered by light a possibility? are there things you can see that mess with your brain that you can’t see...

2. upside-downchristopherrobin likes this
3. autistic-mom likes this
4. clatterbane likes this
5. cirque-du-spoon answered: I fall/collide in similar conditions. I have one eye that drifted outwards when tired but no diagnosis and no idea why I fall.
6. strangestructures answered: If some of your senses tend to “crowd out” other senses, could it be your vision just crowding out your sense of balance?
7. aethergeologist reblogged this from withasmoothroundstone and added:

   I have similar problems (although your visual processing issues seem a lot more severe than mine) and your theory that...

8. queen---frostine likes this
9. andreashettle reblogged this from withasmoothroundstone
10. andreashettle likes this
11. withasmoothroundstone posted this

11 notes