This Is Not a Post About Interoception
Well, it kind of is, and so much more. I hope to pique your interest!
Today’s content might seem a bit random and nerdy, but it wanted to be written, so here it is. (interesting - when my therapist recently gave me the task to paint a picture of my soul, I had a really hard time. It didn’t want to be painted.).
“I am staying off camera today, I’ll be listening, but not participating much; I don’t have a lot of spoons today”.
My announcement was met with a raised eyebrow and a moment of confusion.
“Spoons? okay… Well just take care of yourself, do what you need to do to be comfortable.” was the response.
It was a good reminder for me that I am so deep into the topic of neurodivergence at the moment (and have been for almost two years) that I tend to forget that not everyone knows what I am referencing.
So, I thought it could be fun to share a few interesting ideas I have learned for anyone who might be curious, in no particular order. If it sparks your interest, great. Go ahead and dive in (and ask / tell me about it!). Even if this isn’t normally your area of interest, I hope you walk away with some new information, a sense of curiosity, and a bit more compassion for others. Hey, maybe you even have an a-ha moment!
Spoon Theory
One of the most frustrating things as a neurodivergent person is managing my capacity and energy levels. Some “easy” activities cost me a LOT of energy, including scheduling appointments, dinner planning, social events, and various admin tasks. The part that can be almost infuriating sometimes though is how unpredictable my energy levels can be. One day, I’m full of physical and social energy, and then the next, I can barely make it out of bed in the morning.
The spoon theory is a helpful metaphor and tool for understanding how a chronic illness or disability can affect your energy levels.
Christine Miserandino came up with the spoon theory during a meal with a friend to explain her experience with lupus (an autoimmune disease) and limited energy. Miserandino collected spoons to represent the energy she had available each day. She asked her friend to list all the things she did in the day -- showering, eating breakfast, getting dressed, leaving the house, cooking, etc. For each task, Miserandio took a spoon away to demonstrate what it's like living with a chronic illness.
People who are not living with health conditions often wake up with an unlimited amount of energy. They can get out of bed, shower, dress, make meals, exercise, go to work, visit friends – all without a great deal of thought or planning. For someone with a chronic illness, the number of spoons they have varies with energy and pain levels.
Spoons can therefore be a helpful metaphor to decide what activities (not) to spend energy on and to communicate to others when spoons are running low.
The Neurodivergent Spoon Drawer is an adaptation of the spoon theory to neurodivergence which addresses the inconsistency and invites us to consider how many spoons we have available in a specific area (social, sensory, executive functioning, etc.).
Spectrum
It’s time to rethink your idea of the autism spectrum. It’s not linear from “a little bit autistic” to “very autistic”. Rather, think of it more like a color wheel!
There’s also a cool comic strip explaining the concept - even with a German translation for my German audience!
Food for thought: I’ve seen visuals of an ADHD / executive function spectrum, too, though the term isn’t used as frequently with ADHD.
Aphantasia
Did you know that the ability to visualize exists on a spectrum from those who can create vivid and detailed images in their mind, to those who cannot see anything at all? This is called the mental imagery spectrum.
Phantasia is the ability to picture things in your mind. People with phantasia can “see” things in their thoughts, like picturing a beach or remembering a friend’s face.
People with aphantasia - on one end of the spectrum - can’t visualize a mental image. Not of familiar objects, people, or places. Not for thoughts, memories, or images of the future.
Hyperphantasia - on the other end of the spectrum - refers to a highly visual imagination. People with hyperphantasia can “see” things in their mind in great detail, like watching a high-definition movie.
Find out more here: https://aphantasia.com/
Interoception
Sight, smell, hearing, taste and touch - every child knows those are five of our senses. But have you ever heard of interoception?
I was thrilled to find out that there is a term for this annoying phenomenon: I often don’t realize I need to use the bathroom until I REALLY need to use the bathroom. I also don’t register that I am hungry until I am so low on energy that I start to wonder what might be wrong with me until I remember “it’s probably time to eat a snack!”. This happens to me in the middle of the night, too. I’ll lay awake, tired, but unable to fall back asleep. I’ve learned that often, I just need to go use the bathroom, even when I don’t feel the sensation. Not being able to fall asleep is the clue for me; and it took me almost 40 years to make the connection.
So, what is interoception?
Interoception is the ability to be aware of internal sensations in the body, including heart rate, respiration, hunger, fullness, temperature, and pain, as well as emotion sensations. Many people consider interoception to be an additional sense that is critical to the way we understand how we feel on a moment-to-moment basis.
Here is an article that explains it in more depth and also includes ways you can improve your body’s interoception awareness.
A related concept is alexithymia. Alexithymia is a Greek term that translates to “no words for emotions” and describes an experience in which a person has difficulty identifying and describing their emotions.
Double Empathy
You may have heard the myth that “autistic people don’t have empathy”.
I believe it connects to the American Psychiatric Association’s Diagnostic and Statistical Manual’s (DSM-5) diagnostic criteria of “persistent deficits in social communication and social interaction.” (btw, I am not a fan of this deficit based language and prefer ‘difference’).
Dr. Damian Milton proposed with his “double empathy problem” that the issue isn’t that autistic people don’t have empathy, but rather that communication isn’t as effective when interactions happen across neurotypes.
Think of languages - when a German speaker and an English speaker have trouble communicating, it’s usually not because one of them isn’t a good communicator in general; it’s because they speak different languages.
In other words, empathy is a ‘two-way street’.
In a 2020 autism study, Dr. Catherine Compton and her team empirically examined the Double Empathy Hypothesis.
Again, this hypothesis states that the key factor influencing communication effectiveness is whether interactions occur within the same neurotype (Autistic-Autistic) or across different neurotypes (mixed neurotype interactions).
To test this, Compton's study formed three sets of pairings: allistic groups, Autistic-Autistic groups, and mixed neurotype groups. These groups engaged in three semi-structured activities, after which they assessed their sense of connection (rapport).
The results were revealing: allistic groups self-reported the highest levels of rapport, with autistic groups next, and mixed groups reporting the least. However, when 80 observers (40 autistic and 40 non-autistic) reviewed recordings of these interactions, they rated the autistic groups as having the strongest rapport, followed by allistic groups, and then mixed neurotype groups.
Be ready to cite this study next time you hear someone say autistics don’t have empathy! (…and if you have a really hard time doing that because I just told you so, the next part might be interesting!)
PDA
PDA technically stands for pathological demand avoidance, but many prefer the term Pervasive Drive for Autonomy.
The core of PDA is an anxiety-driven need for autonomy. PDA causes someone to avoid demands and expectations for the sole purpose of remaining in control. When faced with a demand (even a really minor one), PDAers can have extreme reactions.
These intense reactions can be to demands that seem really minor to others (e.g., putting one glass in the dishwasher, doing one math problem, taking a shower). PDAers even have this intense negative reaction to demands that they themselves WANT to meet. They often really want to do it (be productive, be compliant, go to school, do the homework, have a job, etc.) but they cannot, because the anxiety is so intense. There is an incredibly strong feeling of “I can’t have my freedom be impinged on by external demands.”
There’s also a more general idea of demand avoidance that can show up for various reasons in different circumstances.
Amanda Diekman's book, Low-Demand Parenting: Dropping Demands, Restoring Calm, and Finding Connection with Your Uniquely Wired Child offers practical advice and guidance for implementing low-demand parenting strategies at home. My awareness around the concept of low-demand parenting has eliminated fights about brushing teeth in my house - that alone was worth it.
Monotropism
Monotropism is a theory of autism developed by autistic people.
Monotropic people have an interest based nervous system. This means they focus more of their attention resources on fewer things at any one time compared to other people who may be polytropic.
Things outside an attention tunnel may get missed and moving between attention tunnels can be difficult and take a lot of energy.
The website https://monotropism.org is full of resources if you find the idea interesting, including a Monotropism Questionnaire.
I hope you enjoyed the info and learned something new today! Consider sharing it with someone and if you decide to dive into any of these ideas, I’d love to hear about it.
Is there anything you’d add to the list? Leave a comment below.
I totally relate to the part where you said you forget that not everyone else is as deep into the subject of neuro divergence as you are! It can become so absolutely absorbing and totally integral in your life that it’s easy to forget that it’s not like that for everyone.
I know that neurodivergent folk have an interest-based nervous system, but haven't heard of monotropism - going to look it up now, so thank you!