Sensational Learning with Penguin

How much do you know about our senses? Most people are very familiar with the five senses that helps us process information about the world around us: Our sight, hearing, touch, taste and smell (a.k.a. the visual, auditory, tactile, gustatory and olfactory senses). Then there’s the vestibular and proprioceptive senses, which are both to do with movement and sensing our body’s position in space (with proprioception being based on sensory input to joints and muscles, while the vestibular sense is linked to the balance organs inside our ears). Finally, there’s the lesser known eigth sense of interoception, and that is what I’d like to focus on in this post!

So, what is interoception?

Sometimes described as ‘the hidden sense’, interoception is all about the sensory signals inside our own body, from our own organs. The signals that tell us when we need to eat, drink, cool down, warm up, rest, go to the toilet etc. Our interoceptive system can also help us regulate our emotions and levels of excitement etc.

If our interoception is working well, it should keep us informed about pretty much any bodily functions that need tending too, and that also includes sensing pain, or changes in heart rate and breathing.

I first heard about interoception about five years ago, as I came across some info online (I think it was on an Occupational Therapist’s facebook page that I first encountered this ‘8th sensory system’). I immediately found it super interesting, as it helped me understand so many of the things that my autistic son (who’s now in his early teens) has had – and still has – issues with throughout his life. Nowadays, I often see parents of autistic children as well as some autistic people themselves describing issues that are likely linked to interoception. Yet many of them are still unfamiliar with the term and what it means. Hopefully I can help spread the word (please share this post if you find it helpful!).

What issues can be linked to interoception?

For my son (who is nonverbal and cannot yet communicate about these things himself), I can see issues with interoception affecting his awareness of when to drink (he often forgets) or eat (he used to not sense hunger when he should, and that may still happen though nowadays he more often seems to not sense when he’s full). I can actually relate to those issues myself as well. I’ve often had days when I forget to eat and only realise when I start feeling faint, and other times I’ve felt unwell and wondered why, before realising that I’m dehydrated.

Toileting issues is another area where interoception plays a huge part, and this is something that I wish both parents and professionals were more aware of, especially around children who are likely to have sensory processing issues, such as those who are autistic (it is however very much possible to have sensory issues without being autistic, so this can apply to many others too). My main point here, regarding interoception and toileting needs, is that if a person cannot sense when they need to go, no amount of reward charts or similar common strategies for ‘toilet training’ will actually help. The good news is that our sensory systems continue to develop as we grow, so often it can be a case of waiting for the child’s interoception to develop, and so helping them become more aware of when a trip to the toilet is necessary. For our son, I believe it was helpful to let him run around without a nappy at home before he was toilet trained, so that those bodily functions became more immediately obvious to him when they happened. I think it helped his brain make the connection between what he sensed inside and what was about to happen. I’m not saying this would work for every other child, but I’m pretty sure that it helped for my son. (There are lots of other sensory issues etc that can also affect toileting, and that need to be considered, but I’m only focusing on interoception in this post.)

Our boy was later than the average child with his toilet training, but eventually got there. He still seems to experience some interoception related issues in this area though, occasionally, as for example a recent situation I describe in this recent instagram post:

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A post shared by SensationalLearningWithPenguin (@sensationallearningwithpenguin)

Another important area that is affected by interoception issues is sensing and responding to pain. I’ve written about this previously in a couple of other posts, and here’s a short description about how it affects our son (and I know of others affected in similar ways, so this is not unique to him):

With regards to pain, he feels some pain for things that ‘shouldn’t’ be painful, such as cutting hair or nails, but in other aspects he doesn’t experience pain when he should, like for example when he caught his finger in a door one time, and it looked so sore but he didn’t seem to feel much himself. And one time when he was a tiny toddler, he put his hand on a plate of baked beans and started crying as he could feel burning, but he didn’t take his hand away from the beans, because his body couldn’t tell him where the pain was coming from (the beans weren’t hot enough to cause any actual burns, and of course I very quickly got his hand out of there, but it was a very confusing experience for us at the time, as this was long before we knew anything about him being autistic, and had no idea whatsoever about any kind of sensory processing disorder).

The above paragraph is an excerpt from this post: Our Life With Sensory Processing Disorder – Part II . I’ve also written about interoception and pain in my post on 3 Autistic Traits I Would Like You To Know About, where I described this further:

“…there is a big difference in his pain response depending on if it’s internal or external. For example, if he falls over and grazes his knee, or accidentally stubs his toe, bangs his elbow etc, he will come to us showing where he hurt himself, usually saying ‘ooh-ho, ooh-ho’ to let us know of his pain. He will also make it clear that he’d like us to blow on it and kiss it better.

However, when he has an internal pain, like a headache or stomach pain, or when he’s hurt himself more seriously (like getting a finger trapped or burning himself on something), it’s much more complicated. It seems like the pain is then more overwhelming and much harder to locate. It’s like a ‘I’m in great pain!!’, without being able to define the source of pain or what would be helpful to do to make it better.

In that kind of situation, he is likely to start hurting himself, which isn’t a totally unreasonable response as a sharp controlled pain can distract from the original pain, but of course self-harm isn’t a good thing. He might also start hurting me (or someone else close to him) as a way of communicating: ‘Feel my pain! Help!’ That isn’t too helpful either, but if it happens to you, try not to take it as an attack on you personally, but as the desperate attempt of communication it usually is.

I would like to point out that these difficulties around communicating about his pain isn’t all about him being nonverbal. Even if he did have words (or was more fluent in using alternative forms of communication), he would most likely not be able to describe his pain in these situations. This is to do with interoception, the sensory system for processing our body’s internal signals (such as hunger, thirst, sleepiness, toileting needs etc, and pain). Without a clear external clue (such as a grazed knee etc) to what is causing him pain, it often seems to be very difficult for him to interpret his body’s signals in more detail.

These issues of interoception can also show themselves in a different way, relating to pain response, which is really important to be aware of if you care for someone autistic, either in a professional role or privately, as a parent etc: Sometimes an autistic person will not respond to pain even when there is a serious injury or other major medical cause for pain! We haven’t had any too serious issues with this ourselves yet, but I have heard from others about doctors missing things like a spinal fracture or an inflamed appendix due to the autistic patient not displaying pain in the ways that would normally be expected. Their sensory processing differences can mean that the signal which was supposed to tell the brain about pain never got through, when the doctor put pressure in a certain place to check for a response. Or the signal might have got through, but jumbled, so the pain experienced wasn’t as bad as it should have been. It could also happen that the person feels the pain clearly, but doesn’t display a ‘normal’ reaction to that level of pain, and they may also get overwhelmed and go into a state of shutdown, which will look as if they’re ‘zoning out’, or getting extremely tired and possibly even falling asleep.

In our Penguin’s case, he had dental issues that went unnoticed for quite a while when he was younger, as he didn’t seem to have the toothaches which the dentist told us he ‘should have had’. Not many things make you feel more like a terrible parent than realising that your child was probably suffering and you didn’t notice…”

If you wish to learn a bit more of other ways that issues with interoception can affect an autistic person (or indeed anyone with sensory processing issues), I recommend listening to this recent episode of the ‘Let’s Talk Autism’ podcast, where I was one of three guests discussing interoception as well as some other aspects around sensory issues:

Interoception (letstalkautism.co.uk)

The other two guests on the podcast were both autistic adults, so they’re sharing about these things from their own experience. For example, Louise explains about sensing interoceptive signals relating to emotions, and Tom talks about his experiences of sensing pain differently to what the medical profession would normally expect. There’s a lot more discussed in the podcast, so do give it a listen!

What can we do about interoception issues?

In the above mentioned podcast, the discussion also touched on ways of helping with issues related to interoceptive awareness. For example, learning more about the body and how it functions can help us become more aware, and practising yoga is also one of the things mentioned as being potentially helpful. Having a list or visual guide at hand for checking in with your own bodily sensations (heartbeat, sweating, dry mouth etc) is another idea, and I’ve also seen it suggested elsewhere that ‘heavy work’ activities can help, as they contribute to ‘organising’ the body in general.

This recent post from an Occupational Therapist I’ve connected with on instagram has some great ideas for working on interoceptive awareness, in the garden:

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A post shared by Kristin-OT/Homeschool Mom (@coastalconnectionsot)

Thank you so much for reading! I hope you’ve learnt something interesting and potentially helpful. If you have any thoughts on what you’ve just read, or perhaps own experiences related to this which you’d like to share, I’d love to hear from you in the comments below. And please feel free to share this post so that others too can become more knowledgeable about interoception – this lesser known but oh so important sensory system.

Until next time, take care x

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