Alexithymia is very common amongst the autistic population in particular. It’s something that comes up time and time again in the autism assessments I do with clients. It therefore, felt important to address here!
So what is alexithymia?
Alexithymia is a difficulty recognising and labelling emotions. This means we can have difficulty with understanding and expressing our emotions. For many people with alexithymia, emotion labels such as “happy” or “angry” don’t necessarily work for us. We might need a different approach to identifying and expressing emotions.
Alexithymia is massively impacted by interoception differences (our understanding of our body cues and experiences). For those who have a heightened sense of what is going on in their body, such as little niggles and changes, they might be able to identify an emotional change in their body. However, they might not be able to identify what this feeling is and label it. Feelings of anxiety in the stomach may be confused as hunger or even pain.
On the flip side, those of us with limited interoception, we might not recognise our body cues at all in relation to emotion, never mind being able to connect the two. Often, this leads to difficulties registering our emotions until they become so intense we are overwhelmed by them.
I often give people a scale of emotional intensity from 1-10, one being very subtle emotional changes and ten being a full-blown meltdown. Many clients first become aware of their emotions when they become a seven or eight of ten. This leads to it being very difficult to regulate our emotions because we have often gone too far in intensity.
My experiences of alexithymia
Personally, I have never understood my emotions. Throughout my life, I have had huge emotions and emotional reactions that I’ve never been able to explain. It’s often after an event that I will realise how I felt about something and everyone had often moved on by the time I had processed it. This meant I had a lot of feelings to revisit with people, often being told I was “dragging it on.” My limited understanding of emotions has got me in many tricky positions, where I have not been able to recognise dangerous situations or unhealthy relationships. I have been completely unable to know how I felt about how people treated me or the situation around me until I was out of it, sometimes years later.
Everyone around me seems to pick up my emotions before I can. I often have no idea what triggered an emotion and I have to talk them through with people to help me identify the cause. This effects my experiences of burnout, because I simply cannot tell I’m experiencing burnout until it’s debilitating. Similarly with depression and anxiety, it has to be intense for me to notice. I honestly cannot describe what is going on in my body at any point due to interoception differences. I cannot even locate extreme pain at times!
Whenever people ask me how I feel, I have no words to describe it, I often have no idea. The only way I can figure out my emotions is through music. I have hundreds of different playlists that are the soundtracks to phases in my life. Sometimes, I just have the urge to listen to certain playlists and I eventually can spot patterns between what I was experiencing when I made the playlist and what I’m going through in the present.
Another thing that has massively helped me is my assistance dog. Because I cannot notice my sensory overload in environments outside of my home, or stress at small transitions or social interactions, we have trained him to pick up on this. When I’m experiencing lower-level stress, he will boop me at the back of the leg and when my stress becomes bigger, he will jump at me to alert me. Almost every time he does this, I had no idea I had ventured from baseline. It’s amazing how much he can pick up on and how much of a difference it’s made.
How can we support ourselves when we have alexithymia?
Simply, I cannot rely on my body to alert me to changes in my emotional state, so I have had to get creative. My assistance dog has helped me to spot patterns and potential triggers for emotional responses. We now know what kinds of social interactions will stress me and which environments will cause a stress response. This way, we can predict my emotions ahead of time. (And of course, as an autistic person I love patterns!)
Here are some things I advise to my clients when alexithymia is identified:
- For more information on Alexithymia, read here: https://autismunderstood.co.uk/autistic-differences/alexithymia/
- You might benefit from a different approach to expressing your emotions. You might find it more helpful to express your emotions through music, drawing, movement, colours or metaphors. The Incredible Five Point Scale and Autism Level Up would be good to have a look at for ideas.
- I recommend having regular “check-ins” to monitor your emotions and body sensations, so that you are able to spot cues earlier. This would involve setting a reminder several times each day to check in with the following:
1. Am I hungry/thirsty? Do I need to use the toilet?
2. Is my body comfortable? Where is the discomfort if there is any?
3. Is my attention focused on what it is supposed to be? Do I need a break?
4. How much energy do I have? How do I feel?
5. Does my environment suit my sensory needs?
6. Then taking steps to manage any of the needs you identify through the check in.
Useful links:
Podcast episodes:
Books:
- Interoception and Regulation: Teaching Skills of Body Awareness and Supporting Connection with Others – Emma Goodall and Charlotte Brownlow (2022).
- Interoception: The Eighth Sensory System: Practical Solutions for Improving Self-Regulation, Self-Awareness and Social Understanding – Kelly Mahler (2015).
