Wednesday, 7 May 2025

Proprioception, Autism and Me


What Is Proprioception?


Contrary to what we were taught as children, we don’t have five senses, we have eight! Alongside sight, hearing, smell, taste and touch, there are: the vestibular sense (balance); interoception (inner sensations); and proprioception, which relates to body position and movement in space. Proprioception is the quiet, constant sense that tells your brain where your body is and how it's moving. It's how you know your arms are raised even if your eyes are closed. It’s what lets you scratch your nose in the dark, or walk without looking down at every step. 


How It Affects Me


My proprioception is compromised in two respects. First, I have a balance disorder (Ménière’s), which affects the vestibular sense first and foremost, but is also closely connected to proprioception. Second, it is affected by my autism. It can be hard to disentangle these two (I have written elsewhere about the overlaps between autism and Ménière’s), but since I can date the onset of the balance disorder quite precisely (2007), I do have some memories of what I was like before that to go on.


When proprioception is unreliable, the world becomes harder to navigate. You might miss steps, misjudge where your hands are, or feel disconnected from your body entirely. Back in January 2024, for example, I fell and broke my elbow because I could not judge the edge of the kerb when walking in the dark. I was never any good at sports and prefer to work at a computer where I can be sure of my position. I always look down at the pavement when I walk. If I cannot see the corners in a room, then I start to lose a sense of where I am - I become a kind of amorphous blob, like one of the coloured shapes in a lava lamp.


Hyposensitive vs Hypersensitive Days


I experience a mix of what’s called proprioceptive hyposensitivity, when the signals from joints, muscles, and tendons are too faint or inconsistent, and proprioceptive hypersensitivity, when body feedback feels overwhelming. In the hyposensitive state, I write or type too hard with the pen or computer keyboard, sometimes stumble because I don’t get a clear signal from my feet (which feel removed from me most of the time) or I misjudge my strength when hugging or closing a door. In the hypersensitive state, I get a painful buzz in the skin from labels in clothing or even from having a haircut, and a frequent sensation of being too physically present in my body, if that makes sense.

 

What’s complicated is that these sensitivities aren’t consistent. On some days, I move through the world with reasonable grace. On others, I can barely judge the space I take up. A simple action such as reaching out to pick something up can feel like an exercise in guesswork and luck. I’ve had people assume I’m drunk when I’m simply trying to stay upright on uneven ground, especially during the height of Ménière’s. I can feel like I’m slightly delayed in space, as though my body and my awareness of my body are not quite in sync. Sometimes I don’t trust my limbs to stop when they should. Other times I feel I’m floating around myself, not fully anchored. My balance disorder adds another layer: the floor can feel like it’s shifting, and visual cues don’t always help.


This is a major part of why places like airports and supermarkets are such a nightmare. I can’t locate myself without seeing the corners and so all the other stimuli rapidly become overwhelming. I prefer small rooms with clear colour or texture distinctions between floor and walls. It’s a daily challenge and quite exhausting, because there’s a cognitive load that comes with having to constantly monitor your body’s position.


Living With the Sensory Tug-of-War


If proprioception is one of the body's internal GPS systems, then balance is its gyroscope. It relies on the vestibular system - structures in the inner ear that detect motion and orientation. When the vestibular system is faulty, the world can spin, sway, or lurch without warning. As my brain tries to piece together input from sight, touch, proprioception, and the vestibular system, it can struggle to make coherent sense of it all. The result is a sort of sensory tug-of-war. I might know I’m standing still, but feel as if I’m drifting away. Or I might feel a need to constantly adjust my stance, even when the surface is stable.


I’ve often said I don’t believe in reality, which has always been taken (by myself and others) as an amusing philosophical position. However, I now see it as literally true, and an expression of my proprioceptive issues. There are times when I feel strangely disembodied, like my “self” is hovering slightly outside my skin. This is not conducive to physical grounding. 


Grounding Strategies


I have adopted various strategies to compensate for all this. They are quite subtle but there nonetheless. For example, I love to wear a backpack that is full of gadgets and other bits and pieces. The weight and even pressure of it helps to position me in relation to the ground and the world around me. When I switch to a small, side-worn “man bag” I find that I lose the sense of location that the backpack gives me. The man bag, nice though it is, feels too feeble and lopsided to work. I also use quite a lot of well concealed stimming, pressing against objects, fiddling with things, holding onto rails, tapping lampposts as I walk past, letting my fingers run along fences, and so on. These all help to keep me grounded, to feel where I am.


Reflections


When I reflect on all this, I think I have underestimated the importance of proprioception in my life, something which Ménière’s has really helped to bring to the fore. Because of this awareness, I reckon I now have a deeper relationship with my body. It’s not a comfortable relationship, but it is honest. I have to pay attention to it and try to adapt to its needs. The consequences of resisting or ignoring this requirement can be catastrophic, so I do try, however inadequately. Some days, I feel like a patchwork of sensations and delays. Other days, I find a rhythm, a balance, a fleeting sense of presence. Those moments are small victories.