Sensory processing and my dislike of gentle touch

(This is an edited version of the original, first published on the Stickman Communications Blog in June 2022.)

Sensory processing issues are widely known to be part of autism - but they are also part of hypermobility syndromes. In my case they seem to be due to a combination of neurodivergence, hypermobility (general) and a very hypermobile neck (annoyed neck days often coincide with worse than usual sensory/proprioceptive issues).

There are probably lots of sensory reasons that touch can be disliked (as well as things like it causing pain), but I'd like to share one that is key for me.

This is not a medically proven research article - it is my subjective experience of having a fairly extreme dislike of gentle touch.

I strongly dislike unexpected light touch. 

When I say strongly dislike, I mean I will instinctively cringe away from it. It can make me feel sick. If I am fatigued (and therefore have reduced coping capacity) it can push me as close to a panic attack as I've ever been. 

Poor Proprioception

In order for this to make sense, you need to know that I have poor proprioception. This means a poor awareness of where my body is. For me, when my muscles are active and engaged, muscle tension means my body position awareness is OK. But when I'm relaxed it becomes poor. Very poor. By very poor I mean that as a child, if sent to bed when not sleepy, I would play a game where I'd relax, wait a bit, then guess where I'd left my legs. I found it fascinating how wrong I would be.

Moving or applying deep or heavy pressure gives my brain enough information to be able to locate the limb (at least approximately), and the connection is re-established until I relax again. However, the more fatigued I am, the more I will struggle with proprioception (and the compensatory mechanisms I use to locate myself) and it often causes issues. Even when I haven't completely 'lost' the connection through relaxing.

So how does this affect my response to touch? 

Light touch doesn't give enough sensory feedback for me to locate the body part. So, it's like my brain gets a message that something has touched me. It can tell which part of my body has been touched, but it isn't sure a) where that body part is, b) how hard the touch was, c) what has touched me. So essentially, it doesn’t have enough information to work out whether it’s a threat or totally harmless. Unsurprisingly this triggers my body's 'fight or flight' stress response as it could be dangerous. Not only that, but my brain also feels sick because it has a sensation on a limb which it can't locate internally - WHERE IS MY ARM? WHERE IS IT!!! It is hard to describe just how horrible this can feel.

And the sick feeling doesn't disappear once I know what's touched me. It stays because my brain is still trying to cope with the poor proprioceptive feedback.

So, after an unexpected light touch, I apply as much pressure as I can to the area. The deep pressure gives my brain the positioning cues, the sick feeling disappears and I know where the limb is again. Sigh of relief. I can now turn my attention back to whatever I was doing. Although dealing with all that will have drained quite a bit of energy.

This is also why I often sit on my hands, or clench and stretch them when talking. It gives me enough sensory feedback to let my brain relax and focus on whatever I'm trying to do. It is why at events or during Zoom meetings I will sometimes have something high resistance to fidget with. (Actually, my latest favourite fidget for Zoom meetings is the new ‘hypermobility.org’ fidget disc keyring! It’s attended all my Zoom meetings since I got it!).

On a bad day, touching something unexpectedly soft - like a soft fidget toy that looks solid, or an apple that’s gone soft - can make me feel physically sick. Because again my brain knows I'm touching something but can't locate the limb doing the touching. My brain can’t find the positional 'fix' by increasing my grip/contact pressure, because the item just squishes further - increasing the brain-panic. Then I drop it and grip the nearest solid item (often my wheelchair push rims - twisting my fingers around the spokes) to reset my brain. 

Expected light touch is a bit easier to deal with because I can see it and/or have consented, so my brain has the context it needs to be able to decide it is safe. This means I don’t get the 'unexpected fight or flight' reaction. I can tolerate it for longer. But it doesn't resolve the sensory processing issue - I'll still need to move away from it and apply proper pressure in order to be able to concentrate on anything else.

Expected firm touch - solid contact that triggers a lot of feedback can be lovely. Providing enough sensory feedback to compensate for my poor proprioception…. Only that brings up the issue of touch causing pain – a whole other issue in its own right!

Here is the fidget disk keyring Hannah refers to in the article:

HMSA fidget disk keyring

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