Getting to know yourself – Interoception and autism 

Yesterday I had an epiphany. I seem to have quite a few epiphanies lately and it was Christmas I suppose.… Epiphanies are nice because I can share them with people. The epiphany I had was I understood what being tired felt like and so I went to bed because I felt tired. In the past I would have worked myself to the point of collapse and then realised I was tired. The skill or ability needed in this case is one called interoception. It means being aware of the sensations in your body – hot or cold, hunger or satiety, illness and pain and the need to use the toilet. Autistic people are very frequently unaware of those sensations in the body.

Being aware of interoception is a very useful life skill. Many autistic people do not know if it is hot or cold out or wether they feel hot or cold. This can be very unpleasant. In my case ion one occasion this meant I wore abut four warm layers to a music festival in the middle of summer when I was a teen and probably only just escaped heatstroke!

Many autistic people are not aware of sensations like needing to go to the toilet util it is very urgent indeed! This is most likely a strong contributor to autistic children finding  potty training difficult and having ‘accidents’ even when they know about using the toilet. It can cause behavioural issues. Can you imagine sitting in a  classroom feeling very hot or very cold or being really hungry or unpin or needing the tiles ad then having t concentrate on school work at the same time? Add into the mix a rude comment from a fellow student, sensory issues or a taunt from a bully and you can understand why some autistic kids behave aggressively to others or self-harm.

I remember when I was a child no knowing what the sensation was prior to vomiting. I simply couldn’t figure it out util I was much older. Even then I confused it with the physical feeling for anxiety. My parents’ car was testament to the issue (sorry Dad!!).

I can forget to eat or drink. I never feel like I am hungry, even after not eating al day and I forget to drink water because I don’t really feel thirsty. When I do eat and drink I feel absolutely fantastic because presumably I have been hungry and dehydrated without knowing it!

Another issue for autistic people is the physical sensation of pain. For some people – like me – I have a very poor awareness of when I’m in pain. My parents say that when I was a kid I would never complain that something hurt or I felt well and if I did it was a sign that something was really wrong. Even now I find it hard to pinpoint when I am in pain. A few years ago I had a staph infection which was actually quite serious but it took me several weeks to realise anything was wrong. Imagine if you do not feel pain but have a serious injury. A friend encourages you to see the doctor and the doctor has no idea how serious the injury or illness because you don’t seem too bothered about it. Or the converse of that: your pain threshold is very low and the tiniest thing causes pain. People in this situation are often ignored when they express pain which in some instances may actually be a sign of something serious  and they are seen as apparently  ‘crying wolf’. These are both potentially various dangerous situation for the autistic person resulting i them not getting the medical help they need. Making doctors more are of interoception issues  is a very good idea.

Autistic people can be completely unaware that any of these bodily sensation are happening but interoception s a skill which can be taught, My friend, colleague and coauthor Dr Emma Goodall, who is herself autistic and is a professional in the field of pedagogy and autism, has written this excellent resource on understanding, building and supporting interoception in autistic children. http://web.seru.sa.edu.au/pdfs/Introception.pdf  It is a creative commons document so please share it around if you wish!

With Emma’s work and the work of others we are seeing the difference that an understanding of interoception is having on autistic people.

For people who are good at interoception these sorts of difficulties are probably hard to imagine. As always, we tend to see others through the lens of our own experience, but an awareness of interception and the difficulties autistic people can have with it is really important for parents of autistic kids and educators and clinicians  who work with them and obviously autistic people ourselves.

I am very proud of myself for figuring out the tiredness thing yesterday. I imagine it will have a big impact on my mental health and wellbeing. It would have been nice if someone had helped me to be aware of these sorts of things when I was a kid. Of course we can’t go back in time but hopefully a growing understanding of autism and interoception will support autistic kids and young people and help them reach their potential.

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Me feeling the sensation of purr. That one I am aware of

5 thoughts on “Getting to know yourself – Interoception and autism 

  1. Thanks for sharing this Jeanette, it was very informative and useful. I would suggest however that you get your article spelling/grammar checked before posting as there are some gaping errors in this that made it difficult to read in places.

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  2. I believe that ASD people, like myself, prefer cat company over that of dogs mostly because cats are silky soft to touch (maybe relevant to ASD hypersensitivity?) and generally more mellow and slower-motioned thus less sensorily overwhelming. [Obviously I’m a cat person; however, it’s a dog’s (generally speaking) exceptional devotion to its master that makes me exceptionally intolerant towards its abusive master, especially with the dog’s sad, bewildered expression.]
    Perhaps not surprising, there’s increasing evidence that pet felines greatly help autistic people, though especially children, cope with their daily emotional struggles. https://www.petful.com/behaviors/how-cats-helped-my-son-autism/

    My mother’s cat is black, as were her two previous pet felines — all special and ripe with personality. I consider(ed) them all my pet felines, too. The second one was named Mimi, about whom I penned two poems, both essentially true stories involving her brazenly playful and adventurous character. One unforgettable account was related to me by my mother twenty-seven years ago. If it’s allowed, I’ve included it:
    THAT YOUNG BLACK CAT NEEDED SOMETHING (a mostly true story) … ‘If only I had something new,’ / she thought, ‘something adventurous / to do, like when the fields grew tall, fields from which wild fowl fed and flew’; / she, feline feisty and precious, / needed something or to climb the wall. // She walked over to the window pane / and looked out to the neighboring homes / to where she hoped to find something / —something new, beyond the back lane, / rocky road, where she’d often roam, / to where her eyes would be wandering. // And when her attention was caught / by the towering shingled roof / sheltering the large corner store, / she at once decided she ought / to climb to its black peak as proof / of her worth to those who did her adore. // Through the yards one by one she went, / glancing around this and that corner, / over then under fences tall / till she stood at the wall she’d meant / to conquer, as a foreigner, / without any fear that she’d fall. // She looked to the two garbage cans / leaning against the wooden shed, / right next to the store that was so pink; / up she jumped, her feet and hands / reached the top by but a thread, / of no better place could she think. // Having achieved her noteworthy climb, / she gazed over to the swaying trees, / unaware that her hostess stood near; / at the bus stop, as passed the time, / the woman looked up, into the breeze, / and saw her black pet cat who knew no fear. // Thus the feline had done something new / and not seeing her hostess’s stare, / she returned home fulfilled and content, / for from this day excitement she drew / and she thought again she’d climb and dare / those high places worthy of her scent.

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