Allodynia Sucks

I have AllodyniaIt sucks. And by sucks, I mean it really and truly, totally, 100% sucks. You know the feeling when you have a still healing sunburn? You know that feeling when the slightest touch makes you recoil in pain? Yah, that. You know the relief you get once the burn has faded? Yeah, I don’t get that.

I haven’t had it my whole life though I’ve always been hypersensitive to touch. I’ve never liked being touched, never liked hugs. As long as everyone touches my clothing and not my skin, it’s fine. But living with it day in and day out is exhausting.

Some people only experience it when they have a migraine. Others, like me, have it 24/7. It restricts my clothing choices – some of them are literally painful to wear if they aren’t made of the right fabric. It means I have to use a blanket year round to sleep under – I absolutely require the soft touch against my skin because the feel of the room air on my skin is painful.

Just imagine.

Imagine enjoying the feeling of a breeze, but at the same time it’s painful because ANY type of touch hurts.
Imagine craving physical touch and affection, but not being able to enjoy it, because it hurts. Imagine not being able to enjoy cuddles… because they hurt.

The worst part is for me, there is no treatment. Sure, they can take the edge off.

But I’m still going to live in pain.

Simply by being touched.

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.