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Not being here

I feel constantly detached from my body, and I think it is connected to my autism.

I know that I am sitting in this chair. I know that I am writing these words. I know where I am, and I know who I am with. But I cannot really feel any of those things.

If I try to think about how my legs feel, I draw a blank. If I try to think about my weight pressing into the chair, I get nothing. Instead, I notice a strange, floaty feeling. A frustrating and unsettling reminder that I do not ever feel connected to my body.


 


Feeling constantly detached from my body

I have had this feeling for as long as I can remember.

I first noticed it as a young teenager, but suspect it had been going on for longer. As a child, I would stare at the wall and feel a strange fuzzy feeling in my brain. It distorted my perception and made things feel much bigger and dream-like than they ought to.

Much later, when trying to find an explanation for my other symptoms, I stumbled across the term ‘depersonalisation’. I read that, besides feeling very detached from your body, it can also cause visual distortion. I read that this did not typically last more than a few days or weeks, and is normally a response to acute trauma…

By the time I was reading this, years had passed. And, if it is at all connected to the strange sensations I felt as a child, perhaps it has been happening my whole life.

Day-to-day, I do not always notice this detachment. After a few years of being kinda freaked out, I learnt to cope by ignoring it. Nevertheless, there are times when it is problematic.

In meetings, I often have a feeling of “coming to”. All of a sudden I realise that I’m in a room with people. And really hope I have been saying things and making facial expressions that make sense up to that point.

I get confused about whose arm or leg is whose when sitting with someone, because I am not connected enough to the bits that belong to me. Seeing someone move a leg, which my brain evidently thinks might be mine, can be quite disturbing.

It means feeling less connected and present in situations that matter. Like spending time with a partner, or walking alone in nature. I want to feel like I am really “there”. But I just can’t. I feel far away and distant and disconnected.

It’s not all bad. I think in part my brain does this to protect me from becoming overwhelmed. It really helps in busy environments or even very emotion-high situations. It means I have more distance than others. I see things a little differently, because I can press pause on the processing and step back.


 


I think this is connected to my autism

There are a handful of times when this feeling has disappeared. It has only ever lasted a few moments.

Almost all of those times resulted in a panic attack. My brain — presumably not prepared for the sensory onslaught from which it is usually shielded — is suddenly thrown into overdrive.

There are four times when this has instead been enjoyable. Once while cuddling up with a partner. And the rest during yoga or some sort of stretching exercise.

So, what do those things have in common?

  1. They’re meant to calm you down

  2. They give you more proprioceptive input

Hmm.

One of my biggest sensory issues is having too little proprioceptive input. This input is generally “organising” for your other senses. It tells your brain where your body is in space, giving vital context to all of your other sensations. So it makes sense that — with less of that — I would feel detached.

I had always assumed my feeling “out of it” was 100% anxiety. That if only I could tackle the anxiety, I would magically melt back into the real world. Anxiety certainly modulates things— and is by no means independent of my sensory stuff. But if sensory processing differences are a key part of the cycle, then it might not be a thing I can completely fix.


 


Coming to terms with it?

A lot of things about my diagnosis have been a relief to discover. As if I have been finally able to let something go. This feels different.

I desperately want to feel connected to the people I am with, and to what I am doing. But I cannot fundamentally change how my brain processes sensory information. So maybe this doesn’t get better. And maybe I learn to embrace the distance and make the most of that instead? I’m not sure.

There are things that help me get more proprioceptive input and in turn, reduce my anxiety. This hasn’t yet made a difference to the detachment, but certainly calms me down. Which can’t hurt. Some examples:

  • Pressing my hands down on my shoulders. It’s hit and miss, but in the right moments, this will instantly tank my anxiety levels.

  • Very tight hugs and/or wrestling holds. Not joking: these holds were a game-changer when I was in constant meltdown on a recent holiday.

  • Sleeping or lying under a weighted blanket.

  • Using a lap pad at my desk. Right after my diagnosis, I experimented with two 3kg weights on top of a cushion… kind of awkward, but I guess in theory anything heavy might help!?

  • Wearing a backpack while out walking, and adding some weight to it if it’s not already full.

  • Stretching, holding dumbells, using resistance bands. I experimented a bit with having a resistance band around my desk to kick. Apparently, this helps, but I can’t get the angles to work.

I am hopeful that some of these things — given time — will help me feel more “here”. At least sometimes. For now, I will try to pay more attention to the advantages that detachment does give me.

While writing the last sentence, I remembered a conversation with my Head of Sixth Form. I had told him I felt very “out of it” all the time. It was upsetting and unsettling me because I did not understand it, and could not yet ignore it.

He told me that maybe my brain just works differently. That this gives me a different perspective from others, and that can be good sometimes. I can use it to my advantage. Little did he know, he had just told me precisely what it took me over a decade to learn the hard way.

Pay attention in school, kids…

Lauren x

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