Hi, it’s me again.
Today I thought I’d share with you something a little different than usual. Today I thought I’d share with you the story of why I’m a spoonie. What’s a spoonie you ask? A spoonie is someone who has in terms of the spoon theory very limited spoons, which is in short is another way of explaining having very limited energy to do things.
Now before I go on I do want to make clear that everyone with autism is different, this is just my story. People with autism are just as diverse as neurotypical people, if not more. Autism simply means your brain works differently. Not better. Not worse. Just differently. This can mean that you are very good at things that neurotypical people don’t consider normal, or not good at things they do consider normal, or even unable to do them at all. And those two are not mutually exclusive. Autism itself is not a disability, but a neurodiversity, but it can come with symptoms that are. I personally do label myself disabled.
For many autistic people just being different is a struggle in an of itself. Not so much the being different itself, but the way our society is very set in it’s ways and tells everyone who’s different they’re wrong. Those ways are very neurotypical centric, meaning the ways of neurotypical people are seen as the norm and everyone else should just adjust to that. And it’s that adjusting, or refusing to and having to deal with the consequences, that’s incredibly exhausting, if at all possible.
One of the things being autistic for me is that I am hypersensitive. By this I don’t mean emotionally (again, speaking from my own perspective), but being very sensitive to sensory input. So that’s sight, sound, smells, touch and taste. Sound, touch and sight are the worst ones for me. On top the input coming in stronger, my brain doesn’t automatically make a difference between foreground and background. Which means I need to process everything that comes in. This means I have great attention for detail, but can’t see the big picture very well. It is also very exhausting and easily gives me headaches. Being very sensitive to touch makes that I don’t like being touched. My partner is pretty much the only person I am ok with touching me, and they still have to be careful. It also makes me a very textured eater. There’s not that many things I don’t like the taste of, but I’m very picky when it comes to texture.
Now sometimes when all the sensory input becomes too much, my brain freezes, kind of like a computer does. In these moments pretty much all I can do is rest. But we as a society have gotten so used to the idea that rest means physical rest while still taking in sensory input, for example in the form of social media of movies, that it’s hard to take a break from sensory input. For me the most effective thing to do is to meditate, but unfortunately that’s not exactly the easiest thing to do. Naps just aren’t an option for me for some reason.
This freezing can also happen for other reasons. These reasons include sudden changes, getting asked to do something, even the simplest of tasks, difficult conversations, and strong emotions.
Another thing that keeps me from doing things is called executive dysfunction. It’s best described as the inability to make decisions. I don’t really know how this works and it can be triggered by loads of things. It’s basically the inability to start tasks. And not just chores, this applies to things you like doing too. It feels like you just can’t start it yet, that you have to wait for something first. But that thing you have to wait for doesn’t actually exist. And yet you keep waiting. You have to wait. Weirdly enough this can also stop you from resting. It can stop you from putting away a book, or from going to bed. It can even stop you from going to sleep when you are already in bed. Breaking through this can often seem impossible. For instance when I’m hungry and I really need to make myself food. Motivation can get me to get up and check the pantry to decide what I want to make, only for executive dysfunction to drag me back to my chair still not knowing what I want to eat, let alone actual food. I can end up doing this a dozen times and still not have food. When I do manage to break through it, it can either leave me exhausted and doing the bare minimum or I can end up doing something as if I never had any difficulty to begin with, but either way a lot of time tends to have passed.
Social anxiety is contrary to popular belief not actually a symptom of autism. Nonetheless many people with autism do also have social anxiety or even anxiety in general. For many of us this is caused, specially social anxiety, by being told over and over again that the way you interact with people is wrong. For example making eye contact takes a lot of energy and concentration for me and takes away from focussing on what you are saying. Yet many people are bothered if you don’t make eye contact and some will even get angry. For some autistic people making eye contact is even uncomfortable. Social expectations are incredibly neurotypical centric. Able-bodied neurotypical centric even. Having difficulty with those expectations means difficulty making (and keeping!) friends. At the moment the few friends I have left are either neurdivergent themselves or are very accepting towards neurodivergent people as I have given up on trying to pass as neurotypical. My friends should be friends with the true me, not some mask. Well of course no-one ever gets to see all of you, but at least they’re not seeing a fake me. Love me for who I am or don’t love me at all. This took me a long time to realise though. Now between my partner and I we dropped as many of those expectations as possible, but as you internalise them it takes time to let go of them. This makes our home situation a lot more restful for both of us. The flipside to this is that I am actually unlearning to pass as neurotypical and even to interact with those who do hold on to those standards. And while my true friends are fine with that, it can be difficult in other unavoidable situations as formal appointments.
Now you may have noticed that I have mostly talked about negative aspects of my autism. This is probably because society tends to define autism by its’ negatives. For example most people only get diagnosed if they don’t function to societies standards. This is also where the idea that autistic people don’t function to societies standards comes from. Don’t fix something that ain’t broken right. Even though broken is not what we are, we are just different. I guess it’s just hard to see the positives of being yourself when you are living in a society that’s not meant for you to fit in.
Now we don’t want pity or special treatment, but there are a few things that you can do as a neurotypical person. For starters it’s important to take us seriously when we say we can’t do something. Just because the reason isn’t visible doesn’t mean it’s not there. Even when we could do it yesterday. We may not have less spoons than we did then, something that’s difficult to cope with may have happened, we could be saving our energy for something else and many other reasons can cause not always being able to do the same things. Also know that physical energy and mental energy are not the same. Just because someone can go for a run doesn’t mean they have the energy to hang out. It’s also very helpful to acknowledge that there’s no one right way to socialise. Just because some things work for you doesn’t mean they work for everyone. Stop giving advice on how to cope with things that you have no experience coping with. Stop suggesting jobs you think I could do, I am on disability benefits for a reason. Stop saying things like everybody is a little bit autistic, just because you have one trait that’s common in autistic people doesn’t mean you are one. And lastly stop saying you wish there was a cure for autism. It’s not a disease, it’s who we are. Yes, our identity has plenty of other aspects too, but for many people a lot of those are shaped by our autism. And this makes neither our autism or those other aspects of our identity any less valid. By saying you don’t want autism to exist you’re saying you don’t want autistic people to exist.