The first five senses you learn about as a child are sight, smell, touch, taste, and hearing.  These senses tell you about the world around you.  A few weeks ago, I covered the proprioceptive and vestibular senses, which tell you about what your body is doing and where it is in relation to the rest of the world.  Today I’m going to talk about interoception, which is the sense that tells you about what’s going on inside your own body. 

Basically, interoception tells you how you feel – it registers hunger and thirst, tiredness and energy levels, whether you’re hot or cold, your toilet needs, when your heart is pounding or you’re short of breath, and lots of other stuff.

But it’s also responsible for giving you the physical signals of your feelings.  Every emotion has physical sensations that go with it, and interoception registers these sensations to tell your brain what emotion you’re feeling.  For neurotypical people, this is usually a totally unconscious process as they grow up and learn about emotions.  But for autistic people or other neurodivergent people, whose sensory systems aren’t as well organized, it can require a conscious effort of will to make the connection between physical sensations and emotions.

Physical Sensations Aren’t Always Clear

Like all autistic senses, interoception can be hard for us to process.  We may need extra strong stimulation for our brains to make sense of the information we’re getting.  It’s quite common for autistic children to be slower at toilet training simply because they don’t pick up on their internal cues telling them when they need to go to the bathroom.  And they may not realize they’re hungry or thirsty until prompted to eat or drink.

As an autistic adult, I’m usually good about knowing when I’m tired, I always know when I’m cold or hot, and I do know when I need to use the restroom.  But if I’m hyperfocused on a project, I will forget to get hungry.  Eventually, I’ll look up to find that it’s after 10 pm and I haven’t eaten anything that day, but I didn’t feel hungry at any point.  I also tend to hold my breath during stressful, busy situations, but I don’t notice that I’m not breathing until the short-term stress is over and I feel myself take a deep breath to compensate.  Other times, I’m very aware of being hungry and make a point to breathe through stress.  And still other times, the signals get kind of…muddled…I’m aware that my body needs something but I can’t work out what.    

When our sensory systems are so unspecific, autistic kids and adults may only register that something feels off.  For me, it’s almost always in my stomach, but for others it may be in their chest, or in their head, or their hands, depending on the physical need or emotion involved.  Think of it like this: an odd feeling in my gut could mean that I’m hungry, or that I’m sick, or it could be emotional, but I often can’t tell which it is.

Interoception Affects Our Understanding of Our Feelings

How many emotions affect the way your stomach feels?  Nervousness can feel like butterflies in your stomach, anxiety causes a knot in the gut, shame and guilt twist and burn in the belly.  In all those cases, how do you tell the difference between the emotion and plain old nausea or indigestion?

By the same token, there are several feelings that can make your heart race – excitement, nervousness, anger, even joy.  What cues help you tell one from another? 

Shivering usually indicates that you’re cold, but it can also mean that you’re scared.  How do you know which one it is?  Even if you are cold, can you be sure that you’re not afraid as well?  

In neurotypical people, the interoceptive system gives lots of signals in combination, so that they can tell nervousness from nausea or anger from joy.  Sometimes, though, even the NT interoceptive system gets thrown off, such as when a person goes into shock and starts to shiver despite not being cold and possibly not even feeling fear.

The autistic interoceptive system doesn’t always give us all the signals we need to figure out our feelings or some of those signals don’t get through.  If we only recognize that we’re shivering, or that our heart is pounding, or that our stomach feels queasy, we’re lacking some very important information.  This can make it very difficult for us to know if we have a medical problem or an injury, or if we’re feeling an emotion that we need to find a name for to deal with, which is why poor interoception is associated with alexithymia.    

What Does This Mean for Autistic People?

Well, it means that feelings are complicated for us.  We may only have a vague sense of something being wrong in our bodies, we might not realize it’s connected to an emotion, and we may not have the vocabulary to communicate what we feel, especially as kids.

So many of my meltdowns as an adolescent started with “I don’t feel good” and just stayed there until it all became too much and exploded.  Even as an adult, I can recognize a “bad feeling” that is “overwhelming”, but it’s very hard for me to work out whether it’s anxiety, sadness, shame, fear, hurt, anger, or whatever else.  I was in my 30s before I realized that panic, although quiet, robs me of my appetite while depression and sadness increase it; sometimes that’s how I tell the difference between those feelings.

This also means that we have trouble communicating physical pain or symptoms of illness.  Autistic adults may have trouble being specific about their symptoms to doctors, which may result in us being undertreated or written off as hypochondriacs.  For instance, a recent conversation in the autistic Twitterverse complained about a migraine app asking if the pain is “pounding”, “throbbing”, or “pulsating” – as if those are different!  In my case, because I’ve lived with chronic pain for so much of my life, I tend to discount anything that doesn’t make me moan constantly as “not really pain” and I can be so vague that doctors have to ask a million questions to get to what’s really going on.  Only a couple have been willing to take that time.  Many doctors have pushed prescriptions into my hands when they were tired of dealing with me, just to get me out of their office.

Kids with poor interoception have it even worse, of course, because they’re still developing both understanding and vocabulary.  Their communication may be limited to “I don’t feel good” or “my tummy hurts”.  They might not recognize nausea until they vomit, or say they need to use the restroom until they have an accident, or they might not know that weird feeling in their ear is pain, so they don’t mention it until the infection gets so bad they can’t hear.  And they need help to learn to integrate their physical feelings with their emotions.

How Can You Help Someone with Limited Interoception?

If you have a child with poor interoception, it can help to walk them through the normal bodily sensations associated with hunger, toilet needs, sleepiness, etc.  If your stomach growls, it usually means you’re hungry; if your throat feels dry, you’re probably thirsty – things like that are easily understood because the effects of eating or drinking are pretty quickly noticed.  When you see a kid getting dysregulated, offer them a snack or a drink, ask if they’re too warm or too cold, if they’re hurting anywhere, etc. 

Emotions are more complex and much harder for children to verbalize.  A good therapist can help with this using an age-appropriate wheel of emotions, body charts, or mapping feelings.  Some of the old and newer Sesame Street pieces and Mr. Rogers’ wisdom can also come in handy, even if your child is a little older than the target demographic.  (Yes, I still go back to Mr. Rogers sometimes.  No, you cannot make me feel bad about that.) 

You can also ask a child what they think would help them feel better – but you need to give them options.  Children without the vocabulary to explain their feelings won’t be able to come up with the right words for the solution.  So if they say “my tummy hurts”, you can ask “do you think it would help if you ate something?”  And if it doesn’t seem like a physical issue, you could ask “do you feel like you want to cry?” – yes, this is a thing we don’t always recognize!  Other things you could ask: “would you feel better if you ran around the back yard really fast?”, “would you feel better if you took a nap?”, “do you feel like you want to yell really really loud?”, “do you feel like you want to hit something?”, and suchlike.  All of these can help you and the kid pinpoint the feelings they’re dealing with and find healthy, safe ways to handle them, as well as giving the child more ways to talk about what they feel.

The care and feeding of an adult with interoception issues is a lot like that for an adult with executive function issues.  We need reminders to eat regularly, to stay hydrated, to go to bed at a reasonable time so we get adequate rest (we might not know we’re tired).  We’ve lived with it long enough that we probably have some workarounds, like alarms to remind us to drink some water or go to the toilet.  A gentle reminder to eat (phrased like “have you eaten today?” instead of “you need to eat something!”) is helpful because we do forget.  Suggesting a walk or a movement break when we start to get dysregulated is a great idea to help us rebalance.  But poking at us with “what’s wrong?” or “come on, it’ll make you feel better” will not go over well.  If we want to talk, we’ll try to.  If not, don’t push us to name the feeling or give details – that’s what therapy is for, and we can do that in single hour-long sessions in a controlled environment – just focus on helping us get regulated.

Do you deal with interoception issues as an adult?  Do you find that it comes hand-in-hand with alexithymia or executive dysfunction?  In my case, it all seems to pour into the same cup.  Have you helped children with interoception problems with toilet training or anything else?  I’ve heard about Kelly Mahler’s interoception curriculum, but I haven’t been able to get my hands on it – can anyone tell me how it works?

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