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