Why Are Autistic People Always Talking About Spoons?

Autistic people tend to talk about spoons a lot. Is it because spoons are useful items that make the act of eating stuff less annoying? While spoons do serve that purpose, that’s not the reason a lot of autistic people talk about spoons. Let me explain.

The term “Spoon Theory” was coined by Christine Miserandino, who has lupus. One day, while in a restaurant with a friend, her friend asked her to explain what it is like to have lupus. Christine responded by handing her friend twelve spoons, and said, “Here you go, you have lupus.” She explained how each spoon represented a unit of energy she had, and that for example getting out of bed in the morning would cost one spoon, preparing a meal would cost another, and if she wasn’t careful, she would use up all of her spoons for the day. I’ll link Christine’s essay where she coined the term Spoon Theory here and I’d definitely recommend giving it a read:

The Spoon Theory by Christine Miserandino

The term Spoon Theory really gained a lot of use after Christine Miserandino’s essay, being used by a wide number of categories of disabled people to describe their experience, it is often used also by people with issues such as anxiety disorders and depression. And the term has gained a lot of use in the autistic community. So I’ll describe how my energy often gets depleted, using Spoon Theory.

Now I’m in good physical health, so physical illness isn’t something that usually stops me from doing things, for me it’s got more to do with anxiety. Autistic people often have anxiety disorders, I have Social Anxiety Disorder, and I suspect that I have other anxiety disorders also. Although I love cycling, my long distance cycling trips are often inhibited by my anxiety, it’s very rare that I have to call off a cycle right in the middle of it but it’s that the cycle doesn’t get started in the first place. Here’s how that often goes.

I decide the weather is nice and it’s time to go on a trip to the Nagle Mountains on the bike. Then this happens. I can feel an anxiety attack coming on, and I get a thought, “What if I get a puncture when I’m very far from home?” And this is accompanied by a strong feeling of dread. The resulting anxiety attack costs me one spoon, but I say to myself, “I know how to fix a puncture, and even if it’s not fixable for whatever reason a passerby could help me or I could ring for help.” So then I’m fine for a while, then another anxiety attack, “What if you’re out of phone reception and no passerby is willing to help?” Another spoon gone, but I tell myself, “We’re not in the Sahara desert, even if that happens I won’t actually die.” But then my brain says, “But you could die! You could have to walk home if you can’t fix the bike, what if you run out of water? What if it’s a really hot day and you run out of water? What if it takes so long to walk home that it’s after sunset and then the batteries in your lights run out and the drivers can’t see you? What if? What if? What if?” So without even cycling a mile down the road, all of my spoons are gone. Because of thoughts that I know are irrational, but have completely drained my energy. At this point the cycle will have to wait for another week.

A lot of things are like this. If I have an exam for college in a venue I’m not familiar with, loads of spoons are used up thinking about what happens if I get lost (spoon gone), what if when I get to the venue I don’t know where the bathroom is (spoon gone). Telling myself I’ll simply ask where the bathroom is may or may not help, that often becomes, “What if the bathroom is out of service?”(spoon gone) , what if I eat so little food before the exam that I’m hungry or so much that I feel stuffed, and a lot of spoons have been used up before the exam even starts.

And if it’s a really bad day, a trip to the cinema can set me off, even though I love the cinema. My brain won’t even be good enough to offer an explanation, it’ll just be, “I’ve decided today we’re anxious about the cinema for some reason, sorry!” (Many spoons gone).

It’s not just travel situations. I’m very sensitive to routine change or noise, so these things can cost many many spoons. I often dread when work has to be done on the house, even though I recognize the necessity of it, because the noise accompanied by the routine change is likely to deplete a lot of my energy.

So what does all of this mean for my life in general? It means I pretty much don’t do anything unless I really really want to do it. Whether it’s a trip to the cafe or a trip to the mountains, that is what I absolutely want to do the most at that moment. There isn’t really any such thing as doing something to kill time or I might as well because I’ve nothing else going on, pretty much everything I do is because I really want to do it.

So if you know a low support needs autistic person, or a person with a disability who seems to be “doing just fine”, it could well be the case that it is costing them more energy to do what others take for granted. Perhaps they are “doing just fine” today because they will be completely depleted of all energy tomorrow.