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Why Autistic people may experience intense emotions….

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Placing my pain – or how I’m learning to say “ouch” in all the right places!

In my previous blog Saying “Ouch” in all the Wrong Places, I describe our sense of interoception and how my sensory processing differences result in my brain receiving very muted signals about what I feel inside my body. The blog gives some examples of how this manifests for me and the challenges this creates when attempting to describe medical symptoms and access appropriate medical support.

Today I visited the dentist. Dental appointments would have been unthinkable when I wrote that earlier blog, but with support over the summer, I have had several visits to the dentist, requiring x-rays, a tooth extraction and follow up treatment for ‘dry socket’. I went back today because I was experiencing symptoms of severe pain.

Note that I state experiencing “symptoms” of severe pain and not “experiencing severe pain”. Whilst my muted interoceptive experiences have remained similar, my understanding and acceptance of what they mean for me has changed considerably.

Sensory processing:

Each of us experiences pain differently. It’s common knowledge, and we often attribute unhelpful value judgments to people’s experiences of pain. The way that our brain processes the signals that come from our body is unique for each of us. It is dependent on the context too, and can fluctuate. This is accurate for all people, but Autistic people and those who experience sensory processing differences for other reasons, may experience sensory information in different ways. Not just internal body signals; but noise, taste, touch, smell and visual information too. We may experience sensations intensely, or they may be muted. Sensory information could be distorted or fragmented, or take a long time to process.

My personal experience of pain tends towards not noticing it until the sensations are very strong. This is not because I am some brave superhero – it’s just how my sensory processing system works. My brain requires lots of interoceptive sensory information to register something is happening. Conversely, my tactile processing system needs only a tiny bit of sensory information to register with my brain and I can incorrectly appear to be oversensitive to labels in my clothes, or having wet hands for instance.

How I experience pain:

Just because I may not have a strong awareness of something in my body hurting, doesn’t mean I am not in pain. If a medic asked me to use a pain scale to rate the severity of my toothache this morning, they would have been met with a puzzled look and a “I’m not sure….It’s not too bad, I suppose” – I certainly could not have attributed a number between 1 and 10 to indicate how severe it was. In fact, the stress of trying to define what was wrong and where in my body that sense of something being wrong was located, could have pushed me into complete overwhelm. But I was in pain – only I didn’t feel it in the conventional way.

On Saturday I recognised a change in my mood that was not related to any circumstances or life events – in fact I was having a great day with lots of absorbing activities to occupy me. I found I could not regulate my sensory processing system – and as someone who is proactive in sensory regulation and incorporates it as part of my lifestyle, this concerned me. It was dramatic enough to make me realise that something potentially serious was going on; and because I have an awareness of how I experience pain and illness, I explored whether it could have been caused by pain.

I scanned through my whole body, inch by inch; noticing whether I could detect any sensations, or none at all.

I tried to put my “something is wrong” feeling into words but couldn’t. So I didn’t push myself.

I distracted my mind from disappearing into my black mood in search of why “I” am so wrong, and brought my awareness back to my body. This required a huge leap of faith on my part as I have experienced extensive negative feedback from professionals about my insights into my own needs. However, I know myself well and there is little to be gained by stressing over whether I will be believed or not – or whether I am making a fuss about nothing. My dysregulated sensory processing system and my distressed emotional state that could not be regulated by my typical everyday self-care, told me that I was most likely unwell or in pain.

I checked I did not have Covid-19 and my lateral flow test was negative. I tried to notice any symptoms, such as a runny nose or a cough, or limbs that were an unusual shape, but couldn’t detect anything of note.

I considered the type of negative thoughts I was having and rather than challenging them or getting drawn into them, I stood back and wondered what they were trying to tell me…

Noticing where my pain is:

Using my skills in logic and analysis, observations from years of supporting people who communicate without talking; and combined with past knowledge of myself, I considered I may have toothache. I had needed dental treatment in the summer, so this seemed a strong possibility.

I examined my mouth and face in more detail. I noticed that if I touched my jaw I felt slight pain. I looked in my mouth but saw nothing that indicated swelling or infection. As the day wore on, and into the next day I found that I noticed slight earache as well as the sensitivity when I touched my jaw. It was as if the overwhelming and widespread feeling of something being wrong was settling in one place. The sensation was certainly not pain that could be classed as severe, but I recalled how the abscess that had required a tooth extraction in August had created similar mood changes and sensory dysregulation in my body.

When I visited the dentist in the summer they tapped my teeth and explained that if there was a problem I would soon know! I did not react with a typical pain response but the x-ray showed what they referred to as a pathological cyst. When I viewed the x-ray back in the summer, it enabled me to place my pain in my body, and my mood symptoms lifted, I was more able to regulate myself and I began to notice my toothache and could treat it with painkillers.

I decided I would telephone the dentist on Monday morning. I pushed aside my anxiety about making a fuss and made a plan. I knew the dental receptionist would ask if this was urgent and would qualify that by asking if the pain was so severe it was keeping me awake. This line of questioning delayed my treatment in the summer because I answered honestly and said “no”. However, I realised back in the summer that I was incorrect with my response of no. The pain was preventing me sleeping because I was having nightmares, distressing thoughts, and panic attacks. These symptoms that are typically associated with mental illness are closely linked to physical illness in my case. My nights have been disturbed for some weeks and although I have not had a sensation located in my mouth that has kept me awake, the pain has kept me awake by manifesting in other ways.

The receptionist was accommodating and listened as I explained that my pain was as bad as it had been in the summer. Fortunately I could have an appointment later that morning with the dentist who knew me well. I have very specific support needs when visiting the dentist and was relieved to be seeing someone who knew me.

My appointment resulted in confirmation that my cyst was still there, in the same place and the same size. The extraction and weeks of antibiotics had not healed it. Further treatment is booked and I left feeling reassured.

Conclusion:

I am learning to trust my own knowledge of how my body works. This is no easy task when my life has been filled with invalidating comments, disbelief and failure to address my needs.

Some people work hard to identify sensations in their body and name them “correctly” and describe them so they fit mainstream expectations of how bodies work. I feel no need to do this. I prefer to develop my self-knowledge and accept this is how MY body and brain works. I would like more people to accept the way my body works is “normal for me”.

At times it may be helpful to frame my experiences in ways that clinicians accept and understand, in order to receive timely and responsive treatment, but I do this purely for that reason and I would love to be able to use my own language and lived examples, and be taken seriously. Sadly, if I explained I had mood symptoms and thought it was actually toothache, I would likely be seen as neurotic. I get better treatment by stating I am experiencing symptoms of severe pain. Those times when I am unwell or in pain are not the best time for changing attitudes!

Locating the pain reduces the risks that come from being so dysregulated. It also enables the pain to be treated.

It is interesting to note how once I have located where the pain is likely to be, I start to feel it slightly. When the location is confirmed by x-ray or other tests, it begins to hurt more. The overwhelming sense of not being ok that fills my body, condenses into its correct place. Clinicians can really make a difference to people like me by listening with interest and without judgment. Learning to explore your whole body and notice anything different can be useful too. I have used mindfulness for decades and find body scans help me. Pain scales are not a good indicator of severity of pain for some people – what is more useful is having trust in the person’s ability to notice that something is not right for them – and then support them to explore it.