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The part of autism that no one talks about

10 mins read

How interoception affects autistic people, how temperature dysregulation makes things difficult, and how anxiety differs in autism

I’ve talked to a wide variety of people about more well known autistic behaviours and traits. I’m well known for being vocal about autism acceptance, and I believe there is always something new to learn, the more you get to know me or another autistic person.

There are, however, a lot of things that happen to me which don’t get talked about. None of the three things I have written about appear in any mainstream media. More likely you will come across it if you are a researcher in autism studies or another branch of psychology.

Interoception

Most people have grown up learning about the five senses (taste, touch, sight, smell and sound), but what if I were to tell you that’s only part of the picture? There are actually two other senses (vestibular, proprioception) that I have also talked about quite a bit.

But one sensory and perceptual issue I want to introduce is interoception. Put simply, this is our eighth sense and it lets us know about how we feel inside of our bodies. Is it hot or cold? Am I hungry or thirsty? Am I breathing deeply? Do I need to go to the toilet?

Have you ever wondered why before you are about to speak at a public event, you can feel your body in a certain way? Are you shaky? This is your interoceptive system at work, letting you know that you’re experiencing nervousness.

Interoception also affects self regulation, and other areas such as intuition, self awareness, and social understanding. When something inside our bodies feels off, you’re likely going to do something about it, in order to relieve discomfort caused by a shift in our internal balance.

In myself and other autistic people, there is a lower awareness of interoceptive signals. As a result, it is hard to know when I am hungry, thirsty, tired, too hot or too cold.

You may have seen social media posts targeted at autistic people to remind them to eat or drink something. Interoceptive input is also a reason why I struggle to know when I need a break.

We will come back to interoception in the following sections.

Temperature dysregulation

Most of us are able to feel a change in temperature quite easily. But autistic people can be either hyposensitive or hypersensitive to temperature. To understand this, let’s consider our tactile system.

Below our upper skin layer, we have temperature sensors. Upon coming into contact with thermal stimuli such as a candle flame or an ice cube, an impulse is sent to the thalamus. The thalamus then relays information to the sensorimotor cortex.

Now I of course, sweat, shiver and get goosebumps just like everyone else. These are conscious corrective actions. What differs is my unconscious corrective actions. Autistic brains may experience difficulties communicating between brain cells.

This can lead to problems with modulation. Think of a sound system’s volume. Depending on how ‘high’ or ‘low’ that volume is, our autistic brains will register a weak or a strong signal from a stimulus, or we may confuse the signal altogether.

The result is an inadequate understanding between thermal reality, and defensive corrective actions. You may notice I take my t-shirt off because I feel too warm, when you may be experiencing far colder signals. The same can be said if I put a lot of layers on because I feel too cold, but it is a hot day.

In fact, I am very hypersensitive to hot temperatures. It is hard for me to drink a cup of tea without putting in lots more milk than you might put in it. Similarly, I feel too overwhelmed by an extremely hot summers’ day.

When it comes to cold temperatures, I find that I can function far better. During holidays to Spain with my family I would always struggle to function due to the heat. But it was much easier for me to do things in Iceland and Norway.

So where does interoception come into this? Because I have a hard time feeling the ambient cold, I often do not put on a lot of layers. Similarly because of the strong ambient heat in summer, I find it very hard without wearing a tank top and shorts.

However, the story gets complicated when you consider other temperatures. For example, water. It is so hard for me to step into a swimming pool or the sea, even in a warmer climate. This is in part true for most of us because of water’s high heat capacity.

But it is made difficult when an autistic brain does not register ambient cold and source cold in the same way. This is why you could put me in a country like Norway in winter and I’d love it, but if you were to put ice cubes down my back, I’d probably never want to speak to you again.

It’s also the reason I avoid touching cold metals, and a reason why I can’t wear jewellery or have more than one key in a set. People actually used to dangle keys in my face in a mocking manner.

There is a difference between an ambient temperature outside, and a source temperature from an object, material, liquid or matter. This is key to understanding autistic people.

Anxiety

Many of us experience feelings of anxiety. That fight or flight response you get is because of the autonomic nervous system.

Most of us experience a drop in body skin temperature, raised hairs, perspiration, increased heart rate and a bodily sensation that shoots down us at a very fast rate.

Autistic people, however, have been known to have a different response that is often not typical of the autonomic nervous system. For example, I experience an elevated heart rate when both baseline and anxious. I also do not experience a drop in skin temperature.

The electrodermal activity (which is a measure of electrical conductivity in the skin) in the autonomic nervous system is also a reason why I seem to perspire less around faces but more around objects. However, over arousal to human gaze (eye contact) sets off this electrodermal activity even more.

This means that when asked to look someone in the eye, I experience emotional sweats and watery eyes. In fact, I find looking at unfamiliar faces harder than familiar faces so this further exacerbates my response.

I find myself far more anxious as a result of interoception as well. The two are related in the following way. I get anxious or overwhelmed very quickly since I do not feel it until I am already deep into immense discomfort.

When I’m anxious, my intuition is extremely affected. It will be far easier for me to misinterpret someone’s words, and respond in an unexpected manner. If something has made me anxious, that thought or feeling takes a very long time to subside.

Take home message

I hope this piece helped to give a better understanding of some of the lesser known behaviours and traits of autistic people. I’m always finding out new information about how I function.

The more we can spread the word and increase our understanding, the better this will translate into accommodations and support for autistic people.

Some sources:

https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0059730

Feature image credit: Pexels

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