Sensory processing and my dislike of touch

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.

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. And if I'm fatigued (and therefore have reduced coping capacity) 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. My proprioception is so poor that I might feel pressure/weight deep enough to probably mean one ankle is crossed over the other - but be unable to identify which leg is on top - whether the pressure sensation is on the front or back of the ankle. If there isn't significant deep pressure I might 'lose' them entirely and have no awareness of where they are at all. Literally nothing.

Moving gives me the answer to the location (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 if 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 and kinda knows where on the body I've been touched, but it isn't sure where the body part that was touched is, it isn't sure how hard the touch was, and it isn't sure what has touched me. Unsurprisingly this triggers my body's 'fight or flight' stress response as it could be dangerous. But not only that, 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!!! Unsurprisingly I cannot focus on anything else during this time.

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 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. 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 strong enough sensory feedback to let my brain relax and focus on whatever I'm trying to do. And why at events I will sometimes have something high-resistance to fidget with.

On a bad day touching something unexpectedly soft - like a soft fidget toy that looks solid - can make me feel physically sick. Because again my brain knows I'm touching something, but can't locate the limb doing the touching. And I can't get the positional 'fix' just 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 it removes some of 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.

So there you have it. 

I REALLY don't like light touch. 

Expected firm touch - solid contact that triggers a lot of feedback, however, can be lovely. Only that brings up the issue of touch causing pain...a whole other issue, and another factor in why asking before touching is so important!

So if you know someone who says they don't like light touch - please be aware it may not be a 'preference' - it may be a processing issue which, if ignored, can genuinely interfere with their ability to function as well as give them a lot of completely unnecessary horrible sensations.

(You can find some of our sensory processing related resources here: https://stickmancommunications.co.uk/product-category/symptoms/sensory-processing-symptoms/ )