Freaks and Dragons…I mean…let’s tell it like it is. Certainly an autistic person in an intense stim might look like a freak, or be feared like a dragon, but…there’s more to that story. We all do it, I mean, every autist does it to one degree or another though it’s generally more pronounced and common for children and teens who are autistic. Actually, every human stims…ever jiggled your leg? Clicked a pen? Tapped your fingers? It happens, but the come from and the release are different for those of us who are autistic.
Not an exhaustive list but…common and more pronounced stims include spinning in circles, flapping your hands, turning lights on/off, head banging, rocking back and forth, spinning wheels, lining up toys, and tapping body parts. Other common and less pronounced may include scratching, watching moving objects, staring at lights, humming, singing, leg jiggling, and repeating words or noises. A stim that is very real, and not very talked about is masturbation. There is a point and time where this pleasurable release is actually a stim. It’s a driving necessity without ability to stop it or control it and provides a huge tension release. Perhaps that sounds like a typical self-pleasure session, but I can assure you, it is not. I have both experienced it and also worked with many autistic individuals over the years, many that do not have the ability to speak or explain, but clearly this need is a driving force and beyond what can be explained as “hormones.” I’ve searched online and read about it, and yes…it is a thing…and I mention it here because that’s what I get to do, talk about the shit that’s usually not addressed!! Anyhow, it’s something to be aware of and not be ashamed of if you are that person. Own it! The final category is of less pronounced stims which may be very internal (I have some I’ll share with you) and very hidden, and may not be noticed by people in general. These are where my stims fall into…
I count things by 2 until the number 12. I do this repeatedly, and sometimes I tense the muscles in the backs of my knee as I am doing it, but not always. I find it happens under times of stress, or when I am thinking, kind of tuning out…I don’t know all the times it happens, but it is very frequent and helps me give order to the world around me. If the number doesn’t get to 12, I have to keep going or keep finding ways to make it get to 12. Take a square, for example…each side is 2, but that’s only 8, so then each corner is another 8, which then ends me up at 4…so I have to find another object or keep going on the square, but not in the same way…like if I counted the top and bottom line, then left and right, next time through I would have to do diagonal, if this is making sense. Anyhow, nobody knows I’m doing this, but I’ve done it forever. As long as I can remember. Another stim I have is scratching my head..ooh, definitely under pressure, it is so very soothing, or also when I have to concentrate…or am deeply thinking about something. Without that I get an anxious feeling, tight/tense/hot in my body…the scratching of my head really helps. I don’t think it looks weird…nobody has ever commented on it to me at any rate, but it’s also something I’ve done forever. And it’s even better if there’s a little scab or something to pick at. I know, that sounds gross, but it’s not. I’m not picking until I bleed or making sores on my head or anything, just methodical scratching until I feel at ease.
My daughter has several stims, but sometimes it’s hard to tell if its her tic disorder (she calls it her ‘patterns’) or stimming. I think this is common, actually…difficult to tell if it’s a tension release or if it’s something that must be done or the world will end kind of feeling. I believe a tic is something that cannot be controlled, and must be done to put one at ease, whereas a stim is something that could possibly be controlled, but relieves tension once it is done. Anyhow…this summer my daughter and I went to an escape room type of thing…there were actually several rooms with puzzles to figure out in each room, and by the last room it was almost too much for both of us. My brain couldn’t put the things together, and I could only laugh (actually, this might be a stim of mine too… definitely a tension release under pressure), and neither of us could really make sense of the clues any longer. In the last room she was supposed to be giving me directions which I was completing in another space, but all I could do was laugh, and all she could do was stim…she was saying “Momma! I’m stimming! I’ve never done it but I can’t stop!” and it was true…she had her hands flapping wildly around, and was pacing back and forth. An energy release. The pressure was too much to contain it. “Well…” I said “now we know what gets you there!” We had a good laugh about it actually.
Stimming is often categorized by the sensory input and preference of the individual doing the stimming. For example, if you are highly sensitized to light, you may have a light-related stim (e.g. fingers in front of your eyes while staring at the light) or if you are low sensitized to light, you might line up toys by color and look at them. If you have a sound sensitivity or desensitivity it might be something doing with noise…humming, repeating words or noises, etc. If you are kinesthetic you might rock back and forth, bang your head, scratch, etc.
Anyhow…I have a friend named Ben, and he is autistic. We have worked together on a couple of panels, and he and I have the same ideas about education reform. Ben is a wonderful young man who is in graduate school on the east coast…very bright, and very willing to educate others about autism. I asked him to write his experiences with stimming, and this is what he shared with me:
Just a Normal Evening… Or so it seemed…
By Ben VanHook
It was just a normal Friday evening with my father driving my sister, stepmother, and I to a restaurant called El Tios, a local Mexican eatery. I had just finished my college classes and coursework for the evening (we were virtual because of the Covid 19 pandemic) and my stomach was churning. As we got in the car and set off on our way, it started. Again. This time, without warning. My leg started shaking uncontrollably on the floorboard of my father's car. My father, calmly told me, "Ben, stop bouncing your leg" (as if I could stop!). Only after he told me, I realised my stim started up again. I tried to put both of my hands on my leg to stop it from moving. But my leg wouldn't stop shaking. Thirty seconds later, more irritated and firmly, he told me, "Ben, stop!". I didn't have time to tell him I was not able to stop before what seemed like a pleasant evening turned into a shouting match and what was supposed to be a five second drive to El Tios felt like hours. I felt very frustrated that my family could not understand that I do not stim intentionally and that I would stop if I could.
When we got to El Tios and entered the restaurant, it appeared as if everything had calmed down and all was forgotten. We sat at our table, ordered some queso for the chips and ordered some drinks (I had my favourite pina colada) and it appeared everything was fine. However, the peace did not last long. It was very crowded and busy that particular evening with many families choosing to dine out. And as soon as it stopped, the shaking started. I didn't feel anxious or nervous or anything, however I did feel a lot of sensory overload. It wasn't loud, but there were a lot of voices talking all at once all around me. I didn't realise I was shaking until our drinks almost tipped over! Stimming often happens to me in stressful or overwhelming situations, and oftentimes I do not know I am stimming until somebody kindly points it out.
Trials and Tribulations - The Early Years
"Why are you blinking so much"? "Are your eyes okay?" "Do you need to see the doctor?" These were just some of the questions I was asked by my classmates from third to sixth grade. The reason being, my eyes were a ticking timebomb waiting to explode. Every two seconds (at least), my eyes would suddenly blink, and then continue to blink at a laser-fast speed for a good five minutes at a time. I knew not why nor how they blinked at such speed. Even when I tried to close my eyes, I felt the urge to blink with my eyes slammed shut. It was as if I were a puppet in my own skin, with a much more powerful force opening and closing my eyes, as one would a Pinocchio puppet. It made concentration difficult, finding friends hard (who wanted to be friends with the weird kid?), and it made every waking second a living nightmare because of the physiological strain on my eyes and psyche. Eventually, only after an ambulance was called to my school, my parents decided to take me to the doctor who subsequently found the ritalin was what was causing the issues (I also wasn't hungry during the day so tics wasn't the only problem caused by the medication). Although this is more of a "tic" than a "stim", it was still a very uncomfortable, exhausting, scary time.
I'm a Little Teapot
Imagine you are making oatmeal. You put oats in the bowl, put water in the kettle, and heat the water up. When everything is too hot and the water is boiling, the kettle (hopefully) whistles, letting you know the water is ready to be released into the bowl. That is kind of how stimming feels like for me. Many times when things get too overwhelming or I am at an emotional "boiling point" (stressed, anxious, nervous - sometimes I'm at a subconscious boiling point and don't even know I'm stressing out), I stim. Just as the teapot doesn't have control over its whistle, many times I don't have control over whether I stim. It just… happens. And just as the water gets released, my anxiety is released. Or rather it gets transferred from my mind to my legs. If I am unable to bounce my leg, everything just feels really tense, very overwhelming, and like something's about to explode. The energy contained inside of me cannot be released.
I understand Ben’s sentiments, that as we release our stim, our anxiety goes with it. This is, perhaps, the big difference between autistic stimming and non-autistic stimming. With non-autistic stimming, it’s just an action that fills a space…maybe it helps you focus or concentrate, maybe it just keeps you from boredom. It serves a function, but not the same one.
Anyhow…I hope you got to understand the Freaks and Dragons a bit better, perhaps next time you see an autist stimming in public you won’t give a wide berth thinking they are weird, but understand they may be calming themselves, self-soothing…and you can give some space and understanding for this needed experience.