TW: Discussion of ableism, self-injurious behavior, self-harm behaviors, and suicidal ideation
Before you read, let’s get one thing ‘queer’–you may not pity me at any point in this article. You might be tempted to, especially if you are Allistic, but please resist.
The first time it happened, it was scary. I freaked out. I shouted for my parents, they came running in, but as soon as I told them what had happened, they told me there was nothing to be worried about, and that I’d be fine.
What had happened was that I had fallen asleep on my arm, and when I woke up, it lay limply on my bed, refusing to move no matter how hard I tried. After a few seconds, blood came rushing into it, quenching my dying cells’ thirst, and my arm exploded into the weirdest, most intensely dull and sharp pain I’d ever felt.
Despite my parent’s insistence that this was totally normal, I was enraptured by it, both the new sensations and that it could even happen in the first place. I told everyone at school that day, including a few teachers, and I could just not get over how it felt.
Over the next few years, I developed an extreme propensity for numbing parts of my arms and legs, in particular during long periods of stress and anxiety. There were everyday instances, such as sitting on my arms or legs just right to cut off blood flow for a few minutes; and then there were more extreme examples, such as the time when I got my leg numb for the entire two and a half hour car ride from Los Angeles to San Diego. Holy fuck, getting out of the car hurt SO GOOD. I still remember getting out and struggling to walk while the blood sprinted into every capillary, the pain of that rush, the numbness fading into sensation, my jelly legs slowly solidifying into walkable appendages.
When I finally told my parents what I was doing, they were very, very concerned. They told me that if I kept a limb numb for so long repeatedly, I could be destroying cells and harming my body.
I was freaked out, and eventually I stopped due to the fear that I would need to have an arm or leg amputated, but that was not by any means the first or last type of pain inducing or self-injurious behavior I’ve engaged in.
At birthday parties, there are often clips on balloons meant for clipping the balloons to things so they would stay still, and for weighing them down. I would take the balloons and clip them to my ears, nose, eyebrow, or lips, and keep them on for as long as I could. There was a birthday party I went to when I was probably 10 or 11 for a family friend, where I knew literally no one there but him, his family, and my mom. His mom had spilled soda all on me, and I had cried loudly because of it and I was freaking out until the balloon diverted that tension. I took the balloon and clipped it to my ear until it hurt so bad I was almost screaming. People told me I was weird, but honestly, it really helped me regulate myself, and it felt really, really good.
Then there’s the slapping, biting, and nail digging. This, I’ve really tried to keep hidden, because it’s what most people have commented on the most.
But recently, I’ve been opening up about it, and that has allowed me to be more successful at regulating emotional overload. For example, a few days ago at the Aquarium, a military family got extremely angry at me about our military discount policy, which they felt I was lying about. I called a supervisor, who explained I was right, and she then called a manager who explained we were both right. And then, when my manager offered to give them a better discount, they rejected because it still wasn’t good enough. Overall, it was a really shitty experience, and a lot of their anger was directed at me, specifically how they thought I was fucking up, when I was doing my job correctly. Almost immediately afterwards, I told my boss and coworkers I was going to take a stim break, I went into a private area, and I unleashed an epic slap storm on my arms. They were red, and afterwards, my hand was bruised. But you know what, it got me calm, and I didn’t have a meltdown or a binge episode later that night, which usually happens if I’m not allowed to stim with self-injurious behavior after a major negative emotional interaction.
A common reason parent autism advocates give for needing a cure (or, in more “progressive” cases, severe reduction in symptoms) is because some of us do partake in self-injurious behavior. Some Autistics, like myself, are more aware of the self-injurious behaviors we engage in and their potential for harm than others. I’ve read stories from parents whose children have fascinations with peeling their skin off, and other sensory experiences that present significantly greater potential for harm than any of my nociceptive stims. Most are concerned that their child is trying to harm themselves.
As someone with a history of self-harm ideation, and on occasion, self-harming behaviors, I would like to clarify that the self-injurious behavior I engage in, and others engage in, come from a completely differently place than self-harming behavior.
Self-harming behaviors are behaviors with the express intent to harm yourself. Often, it is a cry for help, and in some instances, can be indicative of suicidal ideation and suicidality.
Self-injurious behaviors, on the other hand, are fundamentally a type of stimming, mostly engaged in for one of three reasons: the behavior is regulating (sensory regulation); the behavior feels great (sensory seeking); or the behavior expresses our emotional state when we don’t have words to (sensory expression). And as with most stims, it can be engaged in when times are tough, or when we are very, very happy or excited or another positive emotion. For example, my family has a lot of chip bag clips just like the balloon ones, and I’ll take them from time to time and clip them to my ears or nose or eyebrows or lips, sometimes because I’m in a great mood, and that helps me both express the good mood, and heighten the good mood.
Of course, there are times when self-injurious behaviors help me regulate bad situations, but parent advocates often forget the potential benefits of self-injurious behavior, and the nuances of self-injurious behavior. They link it with self-harm behaviors, when they share little in actuality.
There are cases where self-injurious behaviors must be addressed. A child fixated on cutting themself with a butcher knife, someone who loves the feeling of scaldingly hot water, etc. But rather than address these behaviors from a place of shame and danger, as is often done, it is imperative to understand that the child is engaging in them because of the sensory high, regulation, and/or expression that they provide.
It is also important for Allistics to make sure they don’t pity Autistics for these behaviors. Trust me, I am quite happy with how I engage in them, and the effect they have on me. I wouldn’t want to change that.
It’s also important for Allistics to understand that these behaviors are not limited to “low-functioning” or “moderate-to-severe”* Autistics. I am an intelligent, passable Autistic, and I still engage in many self-injurious behaviors. As said above, I have more awareness than others of my actions and their potential for harm, but that doesn’t change the fact that I still engage in them.
Bottom line, understand that these behaviors can be very helpful for some of us. We don’t need pity. We don’t need shame.
❤ Piija Suoynna Riistia
*I’m using diagnostic terms for reference. I reject them.