Giving Away Spoons
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I'm certainly not the first person to write about "spoon theory" and I certainly won't be the last. The original story came from the common gas lighting phrase "but you don't look sick".
According to Good Rx, spoon theory is a way to illustrate the energy limitations that can result from living with a chronic illness. Using spoons as a unit of energy, spoon theory estimates how many spoons individual tasks require.
The version I was given by my psychologist when I was diagnosed with the trifecta of autism, ADHD, and PTSD was a story about a woman with Lupus and her friend in an ice cream shop. What's funny is that autistic people struggle with analogies so reading the story took some brain effort for me to connect the dots for myself. I've breifly mentioned it in past blogs, and a good friend with MS reached out and shared a story about the message behind spoon theory and the "but you don't look autistic".
If you ever say something like "you don't look autistic" to me to I'll likely retort with something like "you're right, I don't, I just look like me. Autism, and just about every neurodivergent condition/diagnosis does not have an appearance." I often wonder if what people picture or imagine is a young boy who has temper tantrums and hand flaps. A random idea I have it to start an online gallery with headshots of neurodivergent people with captions like "the face of autism" or "the face of ADHD" as a way to break the conscious bias.
My face of autism
But I digress. My goal for this blog is to make a list of things that require me to give away spoons and what I save my spoons for. While I do technically have some chronic illnesses, autism is not an illness. It's not something to be cured. The hope is to build an understanding for those around me and those who may be around other autistic people for awareness.
As you already hopefully know, autism is characterized by sensory, communication, and social differences. Below I have listed some things that I give spoons away for.
- Rain on my skin and showers
- Strong smells, especially cocoa butter
- Scratchy or rough textures in clothing
- Brushing my teeth
- Any wet/slimy texture like deodorant or touching meat while cooking for example
- Flourescant lighting
- Loud or sudden noises
- Small talk
- Light touch, especially at the nape of my neck
- Multiple people talking at the same time (think public settings)
- Squishy foods like watermelon and tomatoes
- Changing my schedule unexpectedly
- Music with any screaming
- Touching grass
This list is just some of the biggest things I have noticed. There are likely more, and I will likely learn more as I learn more about myself in OT. The thing I hope you learn from reading this list is that many of these things are basic and likely things you take for granted. Although each autistic person's list is different, there are likely some common themes.
I think it is important to note that there are things that can help me earn back some spoons too. Or in some cases reduce the number of spoons required to do a task or be in an environment with my "negative spoon" list above. The following list is my "positive spoon" list.
- Listening to music that I enjoy
- Sitting in a quiet and dark room
- Taking a nap
- Dipping food (think chips and salsa or crackers and cheese dip, for example)
- Cooking (but this one is situational)
- Woodworking (can be situational, and can occasionally take spoons away)
- Reading or listening to a book
- Coloring (think adult coloring books)
- Singing
When I learned about spoon theory I learned that it's important to save back at least one spoon for those situations when you are out of spoons and need to do something that requires that last spoon. Giving that last spoon likely equates to autistic burn out, a full meltdown, or possibly even suicidal thoughts. That last spoon is just, the "always be prepared spoon". I think one key difference with spoon theory for autistic people is that we are not always choosing when we give spoons away, in many cases the spoons are taken by our environment and things we can't control. So every time I go to occupational therapy, I'm simply learning how to better manage my spoons.
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| A graphic of two young boys dressed as scouts saluting. Reads always be prepared, and a small spoon in the lower right corner. |
If you want to be an ally, my best advice is to ask questions. My suggestion for the best question to ask if you're not sure what to ask: "Is there anything I can do to make you more comfortable or to support you?".
This was originally posted here.
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