Ow? What is pain I do not know, and yet I have chronic pain

"Rate your pain on a scale of 1-10"

"I don't know"

I'm always in pain. I don't know how much pain I'm in. Pain is life. Pain doesn't make sense to me. Pain is always there but how do you process it, it is nonsense.

I'm told to rate my pain. I don't know how.

I'm autistic. I also have chronic pain. I'm autistic. I also had disabling pain as a child.

I don't understand pain.

I don't know any other way to exist.

There's a lot of talk about how much autistic people process pain differently, and I can't see those conversations and not wonder, but how much would we actually be able to process pain if our pain was treated, if our pain was listened to, if our pain was taken seriously?

I'm autistic. My pain doesn't matter.

I started having disabling migraines at age 7. They weren't frequent then, but they were extreme in how painful they were. I have memories of that, even if I can't comprehend the pain now. I sprain my ankle walking on flat ground. My body doesn't listen to itself. Pain is just something that happens. I don't know if I ever had a way to explain pain and have it understood, have it listened to, have it comprehended and taken seriously, rather than just being something that wasn't a big deal to everyone around me, so it should clearly not be a big deal to me.

I'm autistic, if I can't explain then it isn't real.

I grew up pushing through pain. I don't have memories of how much pain I had at what ages. My childhood memories aren't that clear. I know that by the time I was an adult I had multiple forms of chronic pain. People talk about diagnoses and treatments and things for pain. This feels like a mystery an imaginary thing that doesn't really exist.

I'm autistic. Nobody listens.

I grew up pushing through pain. It was the only way I had available. It was how I could exist. It was how to survive. It was the only way I could get through day to day. I don't remember details, but I remember this. I don't know if others knew when I was in pain if it was anything other than the migraines that shut me down completely. I don't know if they ever knew there was a possibility of pain.

I'm autistic. Nobody thinks to ask.

I grew up pushing through pain. Now I deal with the consequences.

People talk about pushing through pain like it's a good thing. Like it's how to manage to get to do things you want to do. Like it's ways you can manage to take less meds, and like meds are awful things. People talk about pushing through pain like it's a way to make everything better. It's what I did because I didn't have any choice otherwise.

Now I deal with the consequences.

I don't understand the concept of pain.

No really. I don't understand the concept of pain.

I mean it. I don't understand the concept of pain.

This is more than not being able to rate on a scale of 1-10. This is not recognizing that dislocating a joint means maybe I should actually go to the hospital. It's not like my body is actually telling me I should. This is pushing myself past boundaries, not noticing how injured I am, forcing my body through situations it can't be in, because I don't know the difference. I don't have a warning signal.

Pain is a warning sign. Mine was taken away.

I grew up pushing through pain. Now I deal with the consequences.

I need others to watch out for me. I need to analyze. I need to watch the signs that aren't pain. Because pain means nothing. I don't know how to use pain to keep myself safe.

This is dangerous. This isn't a good thing that pushing through the pain lets me do. This is a terrifying reality of needing to survive and finding ways to survive.

But I'm autistic. So I just process pain differently.

I'm autistic so I just "have a high pain tolerance".

What if people just paid attention to my pain?

What if I didn't have to survive in a world where pain was an unrelenting reality of pushing through with no possibility of anyone even recognizing it existed?

Because dissociation is my life now. I dissociate from pain constantly. I dissociate to survive, because dissociation is survival. Dissociation means not fighting my body in more ways that I can fight it. Instead I just don't have a body. I'm just a being who lives in a meat shell that happens to exist here, that I am using to interact, because I need some way to interact.

But I'm autistic. So dissociation is pathologized into processing differently.

What if I was just given the chance of not needing to?

What if I was allowed to have a body?

What if I was allowed to survive in a way that wasn't needing to dissociate to exist in a world so hostile to me?

I'm autistic, and I have chronic pain. And I don't know how my body works with pain. I don't know and I can't know, because I can't have the option of understanding how my body interacts with things like pain. I need to separate myself, because I need to exist, and I was never allowed to do anything but find ways to exist. And this was how I could.

But, now that means instead, it's all because I'm autistic.

And not because I have pain.

And how many other autistic people is this happening to instead of anyone listening?

Rigid Thinking

It's claimed that autistics have this rigid "black-and-white" thinking. That we aren't "flexible enough" in how we think. That we need to learn how to think how others do, because we don't understand how to think outside of our own ways.

Allistics are just as rigid in their thinking as autistics.

Oh you autistic person, you need to learn how to think how someone else does, you need to think in their way. Well, we're already doing all that work. Allistics aren't doing anything to learn to think and try to accommodate us. How's that for "black-and-white" thinking. We must be entirely like them. We must do everything their way. There cannot be accommodation. There must be assimilation. We already know that. That's not autistics being rigid.

Allistics make all sorts of claims about how rigid autistics are, and don't listen to us. They claim that we can't be listened to because we're just being "rigid" and yet they are claiming "all autistics" this and all autistics that. They claim none of us can do things, all of us must do things, none of us can be listened to. Listening to allistics speak about autistics is listening to rigid speaking in extremes.

And in general this is how things work. Sure, autistics are rigid. People are rigid. Rigid is about controlling your environment, controlling what's around you, trying to make things acceptable for you. What is "acceptable" varies, but that's what people do, whether it is requiring routines to get through the day, or refusing to listen to anyone who makes them question their view point. Being rigid isn't an autistic thing. It's a human thing. Being rigid is pathologized in autistics. That doesn't mean that only autistics are rigid. That doesn't mean that others aren't.

It means that allistics get away with being rigid, and push us aside because we're being "too rigid", we need to change, we need to do things their way, even when we're doing most things their way anyways. It's yet another reason they are listened to over us, you can't listen to someone who isn't flexible enough right? (But it's not like they're being flexible). It means that our rigidity is pathologized and theirs is ignored.

And autistics use this as an excuse too. They say rigid thinking is just how it has to be. It's "just" autistic rigid thinking. "Oh, I'm not transphobic, I just can't comprehend the existence of trans people existing." I mean, it's not like allistics don't do that to us too. It's not like we aren't screamed at repeatedly about how we simply don't exist, and how that's not 'transphobic' it's not like they hate us, they are just claiming we don't exist, they don't want to hurt us, ignoring that these statements do hurt us by denying our existence. But it's "just rigid thinking". Even though it's the same patterns. Even though in both cases it's people who are refusing to acknowledge someone who is outside the bounds of what they consider "normal", and they are claiming only "normal" people exist. It's the same rigid thinking.

It's not autistic to not know things. It's human. But when it's called autistic, it's now a symptom, it's now something which is pathologized, it's now something that is wrong about us, and it's now something that people claim is just a part of who they are so they don't have to bother thinking about whether or not other people exist.

Time and time again people are just like "oh it's just autistic rigid thinking" in order to claim it doesn't matter the abuse that people are doing, to excuse the oppression." That doesn't change what it does to us. That doesn't change what it does to everyone who this is said to. That doesn't make it somehow just an autistic thing. And it doesn't make it somehow a thing that is an immutable fact of the universe that autistics can't grow, can't learn, can't change. We are human too.

Autistics can hurt people. Autistics can abuse people. It doesn't matter how many times you say "I'm not tranphobic but" or claim some other -ism isn't happening because of "rigid thinking" excusing it.

When you say to me that I don't exist that hurts. You can't claim it doesn't. You can't claim that it shouldn't, because you're autistic.

And "but rigid thinking" will not change that.

In both cases, this is people being people, it's not autistics, it's not allistics, it's how we pathologize just a human trait. It's who gets treated how. And in both cases, I'm told I can't be listened to, I can't exist, I shouldn't exist.

Because rigid thinking makes it so.

ABA is always abuse.

Aversives aren't what make ABA abuse.

ABA isn't abuse because of lemon juice being sprayed in mouths (though that is abuse), because of the JRC shocking people (though that is abuse and shut down the JRC), or because of Lovaas slapping people for handflapping (though yet again, abuse).

ABA isn't abuse because of aversives existing. Remove all aversives, and ABA is still abuse. It is not abuse because of the history of aversives.

All ABA is abuse. ABA is abuse whether or not aversives are part of the program. ABA is abuse no matter how prettied up it is, no matter how much it is "but we aren't like them, we don't do those things anymore". Because ABA is about controlling people, about changing people, about not letting people be themselves. You can be pretty and manipulative. You can give people gifts over and over and over again, to make them who you want them to be, and this is still abuse. ABA isn't abuse because of aversives. ABA is abuse because of the entire base point of ABA.

All of that "but not my ABA" or "ABA isn't like that anymore". Sure, your ABA might not involve squirting lemon juice in people's mouths for not speaking "correctly", but it does include things like taking everything loved, and making it only accessible if earned.

That is abuse.

It does involve things like making things necessary for regulating your body, for regulating your mind, and making you earn them.

That is abuse.

It does do things like tell people over and over and over and over and over again how wrong wrong wrong wrong wrong wrong they are. (Even when you use checkboxes where they are seeing whether they are doing "good" or "bad" today)

That is abuse.

And beyond all this, at the base level of all this, it doesn't matter the methods. Because what ABA is doing, is taking someone, and taking control of them. These are just some methods used. And taking control of another person is. just. straight. abuse.

ABA is about saying that your body is mine, your brain is mine, you will do as I say. Stand up. Sit down. Don't move you hands. Say these words exactly. Do what I say.

ABA is about taking someone and molding them to who is wanted. Changing them to who is wanted. Not letting them be who they are.

ABA isn't about teaching. It is never about teaching. It has never been about teaching. It is about control. It is about making someone who is wanted by someone else. Sit up straight, repeat after me, earn your candy.

It doesn't matter whether you do this by spraying vinegar in someone's mouth, or whether you do this through praise. Controlling someone, changing someone, making someone into a model of who you want, is abuse always, and can only ever be abuse, because of the entire concept at it's core. You cannot mold someone into a being you want with "love" and not have it be abuse.

Abuse is not only physical. Abuse is not only getting in someone's face. Abuse is also controlling what you do, when you do it, how you do it, who you are.

This is true in all situations. This is true with ABA. ABA is abuse. It can only be abuse. It is always abuse.

There is no such thing as non-abusive ABA. There is no "but my ABA" there is no "ABA is friendlier now".

There is nothing that will ever be friendly. Nothing that will ever be acceptable. Nothing that will ever be non-abusive, that is at it's core about controlling and changing who a person is into who you want them to be. And that is what ABA is.

ABA is always abuse.

who has no empathy?

I have migraines. I get migraines all the time. I get migraines from everything. People ask me my triggers, and I laugh and reply life, because I am triggered by so many things. I'm a migrainer. My migraines are inherently part of me.

I get migraines everywhere. If I leave the house, I react to something, to everything. If I stay home, I'm still not safe, though there are fewer triggers, there are fewer things that can go wrong, there are more things I can control. My life in many ways is planned around my migraines. What can I do, where can I go? what do I need to keep myself safe? how much can I do before I cannot keep going? how many plans upon plans upon plans need to always be made? How will people react, and how do I need to plan on dealing with others?

Because people are always a wildcard. People come with triggers. People are dangerous. People don't listen. People don't understand. People won't take me seriously, won't treat me as human, won't respect me. People are terrifying and are everywhere. And yet, I am lonely and don't want to always be alone. How to I plan for people when I don't know how my body will react this time?

I can't trust them, experience has taught me that, and yet, experience has also taught me that those who treat me worst are those who's jobs claim they care for us, and those who treat me best are those who "have no social skills". Those who "work with disabled people" lead to trauma and fear of leaving the house, and the children who I hear adults all around me speaking about how much they do not know, cannot understand, will never do, show me so much love that years later it makes me less afraid to face the world.

It was a special education paraprofessional who learned that cigarette smoke was a major migraine trigger of mine, and every time she would go out for a cigarette, would return, to follow me as closely as she could, even when she was supposed to be in a different room than I was.

The number of people in different roles, with different jobs, who've claimed I was abusive for having a migraine, for having access needs at all, has been so high I cannot remember it. I've been thrown off trains, removed from buildings. I am not allowed places, not for any way I act, but because my brain reacts to the environment around me, because others threaten me when they find this out, and because this is my fault.

I must be lying about this. My disability must be made up. From medical assistants to doctors. Professionals of all sort make this clear.

My experiences are fear, knowing I'm not allowed, knowing I'm not real to others. I don't want to go into them, they're just more experiences that all disabled people know.

Because what is notable to me is instead who does care. Who does notice. Who sees me as a person.

Because without stopping, or asking, or saying I need help, there are people who automatically know and see that someone isn't okay right now, and react and respond without questioning doing so. And for me, every one of those people has been an autistic child. Every one of those has been someone who written into an IEP was things about how not empathic they are, how they don't understand social interactions, how they need to be trained. Every one of them was someone who was being abused through ABA by people who claimed they did not know the "correct" social interactions at any point in time. And yet, when they saw someone who they cared about, they immediately responded. And their teachers might not have understood. Because at times, their teachers listened to them, and at others times their teachers went on about how socially inappropriate they were being, but every time, these reactions were the meaningful ones, the helpful ones, the ones that showed me that I mattered to someone in the world, and also the ones that did anything to make it easier to get through that moment in time.

A child taking off their earmuffs he was wearing because noises were too loud, and bringing them to me, and trying to give them to me because they thought that noises would be more of a problem to me than to him. The fact that they wouldn't fit me didn't change how meaningful a moment like this was (and such an action reminded me of the sound protection I was carrying and could not remember about without a reminder. Yet another child helped me go through my backpack and find some sort of hearing protection item to make noises less overwhelming).

A child stopping doing what they was "supposed" to be doing, going through their teachers stuff, and hiding everything that might be a migraine trigger of mine so nobody could interact with it. The teacher got really annoyed with them because of them going through their stuff rather than doing their school work, but it was because the cleaning supplies and such that were easily accessible were repeatedly triggering migraines. They did not find this acceptable, and wanted me in the classroom, so fixed the problem, removing the migraine triggers, so nobody would interact with them.

A class, shutting the lights off, closing the shades, to make it a dimmed classroom, before I entered the room, when they found out I was going to try to teach despite my migraine having spiked high. In an excitable, rambunctious class, every time anyone spoke above a whisper another student reminding them that noise was bothering me and being quiet would make it easier for me.

From students finding ways to help me around a school building when I couldn't walk, to students helping me find places I'd never been before when I couldn't see, it's been the autistic children who help, and they have done it without prompting, and without forcing help upon me.

While to others, I have always been a burden, a thing to remove, it's only been to those who I must hear about how much they, how much I, cannot understand concepts like caring about others and showing empathy, who care about me.