In which functioning levels are complete and utter donkey dung 


image description: a pale brinette female. she is wearing a pink Super Grover t-shirt and smiling sleepily at the camera

Ah, functioning levels. The cause of Internet flame wars, mad mommy rants, and advocate headaches everywhere. They’re so controversial. Some people cling to them and others (like myself) want to throw them into a corn grinder. I’m not going to talk about the people who find them useful, because I find them ableist and problematic. But I will talk about why I have a problem with them. 

As you can see by my picture up there, I look 100% normal. But you cannot tell what my functioning is that day. The problem with functioning levels is that it makes autism way too black and white. It allows for no wiggle room. In this picture, I am relaxed. I am functioning at baseline. I am able to speak, I am able to ground myself, and I am able to write. I may fall into some of my habits, but I am still doing well for all intents and purposes. 

But if I took the exact same picture on a different day, my functioning could be completely different. I could be mute. Not by choice, but because all my words are trapped inside me. I could be completely unable to deal with people and carry out the most basic of social interactions. 

And that is my beef with functioning labels. One day I may be mild and so called high functioning. But yet, due to my lack of executive functioning I’ve had terrifying things happen. I’ve melted a blender. I’ve set fires. I’ve broken a coffee pot and didn’t even realise that there was glass everywhere. I’ve not eaten because I haven’t been able to function enough to do it.

I have been told “you are not like my child. You are so high functioning.” But some days, I am like your child. I melt down. I stim. I cry. I lose my words. Some days I am your child – I have the same thoughts and feelings. Functioning is fluid. Being autistic is not. 

I function enough to live on my own, so I’m deemed high functioning. Even though my sensory orders are so severe I find physical touch painful all the time (which is called allodynia and I find it fun to say). Even though I can’t be in public without stimming. Even though I’m physically incapable of leaving my apartment and my autism difficulties are part of the reason I dropped out of college. 

I am autistic. I am not high functioning. I am not low functioning. I am autistic, because that’s the way my brain is wired. And there’s nothing right or wrong about that. 

I choose not to use functioning levels. They demean me. They are ableist, because they imply that I can or cannot do certain things just because I’m on a spectrum. Even though some of my problems are so severe I require in home care, I’m still happy and proud to be who I am. As I’ve accepted being autistic, I’ve become more confident and bold in my personality. I feel I’ve blossomed and grown as a person by simply embracing it. 

Even when I’m mute. 

Even when I’m scared. 

Even when I’m overwhelmed. 

It’s all okay, and I am still simply autistic. 

3 thoughts on “In which functioning levels are complete and utter donkey dung 

  1. THANK YOU. When we explained what being autistic meant to our two older children in regards to their younger sibling we used similar words to what you do above: “His brain is wired differently and there’s nothing wrong with that. He’s still a person with the same rights and value any person has. He’s still your loving, sweet, and sometimes temperamental brother… but really, so is every nearly three year old!”
    I wish you continued joy in accepting yourself and in being the wonderful advocate you are. 🙂

  2. Pingback: Labels, Labels, Labels | A Heart Made Fullmetal

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