Wish

I wish you could see the beauty of being autistic.

I wish you could see beyond the “problem” of me needing predictability, and instead see me.

I wish you could see the beauty in me thriving.

I wish you wanted me to thrive instead of pretending to be normal.

I wish you could see the mesmerizing world I can experience when I’m interested in something.

I wish you would seek to understand my autistic experiences, instead of deeming them less human.

I wish you could believe that there is more than one way to be a real person.

Respecting Boundaries Isn’t Currency (Trauma Journal)

Letter o my teenage self

Warning: This post contains actual descriptions of an abusive parent’s actions and should only be read if you think you can handle that.

Dear me,

You have the right to boundaries. All kinds of boundaries. You have the right to emotional boundaries, just like physical.

You are easily overwhelmed, because you’re autistic. You have the right to protect yourself from being overwhelmed, but your mom isn’t respecting your need to not get too much of her emotions.

It’s not okay to act like she does. It’s not okay that she demands to be allowed to disrespect your boundaries and needs. It’s not okay that she will only parent you as long as she is allowed to cross your boundaries. Carrying her emotions isn’t your responsibility.

It’s not okay that she demands emotional intimacy that you neither can or want to have with her. It’s not okay that she tells you that nobody can be like you are. You are a human being with valid human experiences.

It’s not okay that she only helps you if she can emotionally violate you in different ways. It’s not good parenting to refuse to respect you as you are. It’s not good parenting to cause you so much pain and harm. It’s not good parenting to manipulate and gaslight you into thinking that you are misunderstanding yourself and your needs, when it’s all about her not understanding what it’s like to be autistic.

It wasn’t okay to abandon you in public places when you got overwhelmed. It wasn’t okay that she was mad at you when you couldn’t find your way home by yourself after she took the car and left you in a mall during a meltdown. It wasn’t okay when she shut you out on the porch when you were five years old and had a meltdown.

It isn’t okay when she refuses to help you unless you carry her emotions. It isn’t okay that she’s treating your boundaries as something she can buy her way out of respecting.

sculpture with mask drawn on

Stopping the Harm

Content: This post includes meltdown, shutdown, self-harm and eating disoders.

 

Sometimes a child’s upbringing isn’t good enough. Sometimes we’re exposed to harm or are hurt over, and over, and over again, and nobody protects us sufficiently. Sometimes, we end up in a situation where we don’t know anything but being harmed. Maybe what’s harming us is also the only way we know to get any kind of validation that we exist. Sometimes what’s harming us is the only kind of human interaction that we know what to expect from. Maybe everything else is unimaginable. Maybe we don’t want to experience the harm ever again, but are forced to by practical circumstances or other people. Sometimes we might agree to experience it again or even take the initiative to it, as a means to experience some sense of control.

To me, school was horrible from the age of seven. I had no words to communicate what I experienced, the only thing I could say was that school was boring. Today, I think the word “pain” is the most appropriate to describe my experiences. Physical pain, emotional pain, sensory pain, cognitive pain. The more I was tortured, the more praise I got from teachers and the less bullied and more part of the social context I was allowed to be.

 
Making autistic people, people with ADHD and other disabilities mask our disabilities and compensating for them by working harder to the point of pupils being tortured and having meltdowns and shutdowns in school or when we get home isn’t ethical. Calling meltdowns and shutdowns “challenging behavior” or something equally degrading and misinforming isn’t okay either. It’s mocking, given the powerless situation these pupils find themselves in, and considering how painful it is to live like this. A meltdown isn’t just anger out of control, being spoiled or being manipulative. A shutdown isn’t an active refusal to interact. Both of these were very terrifying experiences to me. I did my best to avoid it, sometimes by not going to school at all, working out way too hard, or resolving to eating disorders.

As an adult, with knowledge and insights about my disabilities, it’s been a very difficult journey to break the patterns and stop harming myself by masking and denying my disabilities. I’m not pushing myself to long verbal conversations with small talk very often these days. I try not to suppress the movements and body language that happens intuitively, and I’m trying ot quit the gestures, postures and facial expressions that I practised so hard in front of the mirror as a teenager. I’m trying to use the aids and tools I need to compensate for my executive dysfunction instead of just trying harder to organize things in my head. It’s hard, but I’m also trying to ask for predictability and make clear that it’s not a luxury but an actual need. I’m using mobility aids and I’m not apologizing for having to lie down a lot due to pain, muscle weakness and orthostatic intolerance.

It isn’t easy, but I’m trying to move on and stop contributing to the harming of myself by refusing to do what the world around me demands to give me a seal of approval as a real human being. I just wish I could have had a childhood where I didn’t learn that my value as a human being is depending on me being harmed.

hourglass

Living and Dying

This is a difficult post to write and probably a difficult post to read. It’s about my own mortality and if this is triggering or bad in anyway to read about for you, then please don’t read it. It contains mentioning of suicidal ideation, healthcare and trauma.

At some point, all of us will die. That’s a fact, no matter how difficult it is to grasp. During the last two years, I’ve had a strong sense that I won’t live for very much longer. Not because I’m planning to end my own life, even though I’ve had those kind of thoughts too, but instead because my body is slowly but steadily falling apart and I have no faith in healthcare.

I’m chronically ill with several diseases and disabilities. Most of them are poorly understood by healthcare, and I have been harmed by medical assessments and treatments without anybody taking any kind of responsibility for it. I have tried to shed lights on the fact that the design of medical procedures are harmful to people with my diseases and disabilities through both formal and informal channels, but desperately failed.

I was harmed and my ME (Myalgic Encephalomyelitis) therefore got a lot worse. Since then, I can hardly tolerate any interactions with healthcare without getting a worsening of symptoms and sometimes it gets permanent.

I’m autistic and the combination of my diseases and being autistic means that verbal communication is very hard for me. Most of the time I only get parts of what I want to communicate out of my mouth, but in healthcare the verbal communication norm is so strong that my requests for written communication have been denied.

At the moment, I’m finding myself in a situation where I’m getting more painful symptoms and new symptoms. I’m trying to get medical help for them, but the lack of knowledge and accessibility in healthcare means that there are overwhelming obstacles. I have several issues I need help with but I need to take one at a time to manage. It’s not going well, to be honest. I have a lot of unanswered questions about the issue I have actually seen a doctor for, and the treatment I received doesn’t help. Instead, it’s getting worse and I strongly suspect that the doctor missed something.

I am trying to conserve the little energy I have for my kid. That means that I’m waiting to bring up new symptoms and getting them checked. I have a strong suspicion that something really bad is going on in my body, and I know that I can’t meet the demands that healthcare has decided I need to meet to get any help.

Instead of panicking, I’m trying to make peace with the thought that my time will be over soon. My biggest fear is that I will be alive but needing more care and help from strangers. I don’t want to be touched by strangers anymore than I already have. I want to live and die peacefully in my home, without it being invaded by healthcare. I don’t want to be in a hospital with all the trauma that I then will have to live through again.

This is not a way of saying that I want to die. I would prefer to live and be with my kid, partner and friends. This is simply a way of saying that something is telling me that something bad is going on in my body, and I know that healthcare isn’t for me.

So when the new pain runs through my torso, when the new weird light-dots flash around my eyes, my left hand goes numb and my bladder hurts, I try to tell myself that it will be okay. I am trying to get medical help for it but I have no hope that healthcare will help me. I’m telling myself that it will be okay because soon my time is up and I won’t suffer anymore. I hope I’m wrong and get to see my kid grow up but I’m also trying to accept my mortality and remember how much love I’ve had in my life.

When healthcare is too difficult and unobtainable, acceptance in that this world was never really for me is the only thing I have left.

butterfly

How To Rob an Autistic Person of Themselves

Content: Inernalized ableism, ABA, poor treatment of an autistic child and teenager, gaslighting, mentionings of meltdown and shutdown

 

Imagine growing up as a deviation. Everything that is you is considered pathological, bad and wrong. Your interests aren’t allowed to be interests, but are considered an expression of a disorder. You take interest in the wrong things, in an incorrect manner, with the wrong intensity. Your interest in butterflies, where you want to watch butterflies in nature, collect butterfly figurines, put them in a row, look at them and learn everything you possibly can about them, is called a disorder. People reward you when you stay away from your precious butterflies, but you don’t understand why. They are taken away from you when you have done something that apparently was wrong, despite the fact that you don’t understand what you did that was wrong and that it certainly didn’t have anything to do with your butterflies.

“Why can’t I have my butterflies if I don’t wear the itchy socks?”

“Because you’re not in charge here”

It’s all a mystery.

Your feelings aren’t allowed to be feelings, they are considered an expression of your disorder. You feel too little or too much, you feel the wrong feelings and your emotional expressions are a disturbance. When you feel happy from putting your beloved butterfly figurines in a perfect row, people aren’t happy with you. Your joy is a disorder that makes people bothered and worried. When you are scared of something that you don’t understand and that feels threatning, you get punished and pushed towards it instead of protected and validated. People around you seem more interested in fixing your disorder (fixing you) than making you safe.

Your perception and your sensory processing are called disordered. How you perceive and process information is considered wrong. However, you are not given any words to talk about or understand it. Your sensory processing is so obvious yet so incomprehensible┬áto yourself, since it’s called behavior. When a roaring motorcycle passes you in the street and you feel like you are being thrown around from the sound and therefore cover your ears, a very important adult calls it avoidant behavior. It’s considered bad. It’s a problem. Your avoidance of the discomfort is a problem, but your very sensitive senses aren’t something worth mentioning. When you flap your hands and close your eyes in order to better focus, another very important adult tells you “quiet hands”, and “look me in the eyes when I’m talking to you”.

“How am I supposed to understand anything you say when I have to spend all my energy on focusing on your eyes?”

“Because normal people focus better when they look into my eyes. You should too.”

The world is a mystery.

When you’re overwhlemed by just existing in a classroom with so many other kids and it becomes too painful, you stand up and leave. You thought you were protecting yourself. You thought you were shielding your flooded senses but it turns out that you were displaying challenging behaviors. Your behavior is wrong, your sensory experiences don’t matter. Nobody can be as sensitive to lights and sounds as you.

You get stars of gold and gummy bears of sugar when you stay in your classroom, despite how painful it is. It’s important that you put yourself through pain, because otherwise you might exhibit challenging behaviors. If you do, somebody might take your dear butterflies away from you. Your butterflies, with the mesmerizing colors who can put you in a stimmy state of relaxation. Your butterflies, the only thing that can make you relax enough to actually recharge and recover, can be used as a weapon against you because you’re always under the threat of having them taken away from you. They tell you that it’s for your own good, because your feelings and the way you perceive the world cannot be like you are trying to communicate that it is. You are a disordered version of a human being. You learn that you can never indulge in being you, only give in to your basic needs of self validation in tiny portions when nobody can see you.

You get older and by the time you become a teenager, you know for sure that you are wrong. You don’t only do a lot of things wrong, you are faulty version of a person. Everything that is your personality is called a disorder and should be corrected. It’s for your own good, you are expected to show gratitude towards the people who are telling you that your perception of the world is incorrect and that you should never, ever trust yourself.

By the time you become an adult, you have melted away, shut down and almost extinct yourself so many times. Now it’s time to take yourself back.

 

 


Note: This story is based on my experiences but some details have been altered. I did for instance not get stars or gummy bears to stay in my classroom, I was just threatened into staying. My special interest wasn’t butterflies, but something that could make people recognize me. Details have been altered to protect my anonymity, but all depicted feelings and practices are things that happened.