Category Archives: That’s Not What Makes Me Crazy

That’s Not What Makes Me Crazy, Part 3

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.

A young light skinned child gently biting their right arm. Portrait shot against a yellow background, picture is cut off just beneath the eyes.
A young light skinned child gently biting their right arm. Portrait shot against a yellow background, picture is cut off just beneath the eyes.

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.

That’s Not What Makes Me Crazy, Part 2

One of the best parts of working at an Autistic-friendly organization is that I can take quick minute or two stim breaks when I need them. (Stim/stimming is short for self-stimulation/self-stimulate. I’ll go into much more detail later, but essentially, a stim can be anything from jumping, spinning, rubbing something with a specific texture, saying a specific something, or any number of stereotyped or repetitive behaviors.) There’s a quiet room next to my workspace that’s usually uninhabited, and if I need to, I can go inside and jump, spin and flap my hands to calm down and regulate myself.

At the end of the day, after all the guests at the Aquarium are gone, and we’re closing up operations, if I get overwhelmed, I’m free to small stim (hand flap, fidget, apply pressure to my nasal bridge) in our end-of-operations room. If I need to jump, spin, or slap my hands, I can step into the hallway and do so.

A young male-appearing person with short, brown hair and white skin, eyes closed, placing a purple-red crayon on his nose.
A young male-appearing person with short, brown hair and white skin, eyes closed, placing a purple-red crayon on his nose.

Autistics might stim for three main reasons. First, for self-regulations. In the above examples from work, I might get overwhelmed for any number of reasons–a guest tried to walk off with one of my pens, a guest asked if the price of admission included my stapler and I didn’t get that he was joking until his daughter told me he was, some folks came in wearing bright orange shirts and it burned my eyes–and to deal with the anxiety, stress and potential pain, I need to stim.

Self-regulatory stimming doesn’t just help combat or calm negative emotions or feelings. It can also help us regulate intensely happy or joyful experiences. Last month, I had the amazing privilege of meeting Laverne Cox when she came to Stanford to speak. Not only did I get to speak with her beforehand with a small group of trans students, but afterwards I got to speaks with her with a group of campus activists and organizers. Laverne Cox is a true possibility model for me, and twice during the after talk, I got so overwhelmed with my emotions that I needed to excuse myself and go on the outside balcony of the room and stim.

Another reason Autistics might stim is sensory seeking. Allistics (that is, neurotypical [that is, not Autistic]) also sensory seeking. For example, if you like the taste of a certain dish, you might savor it, or make it again. If you like the texture of a certain fabric, you might buy several blankets made out of that fabric. But Autistics often exhibit higher, more intense versions of sensory seeking than Allistics do. This could be rubbing a piece of wood for an hour, or listing to certain music while rocking back and forth. For me, I love to apply pressure for to my nasal bridge, in particular with fresh, Ticonderoga-Dixon pencil erasers (yes, there is a difference between them and other erasers). In 1st grade, I remember whenever we had to sit in class for a lesson or be still for a while, I would take my pencil’s eraser and press it against my forehead. I wasn’t feeling particularly emotional, or in need of regulation–it just felt fucking good. Still does, and I do it whenever I feel like it. I now also have glasses that I wear that I’ve adjusted so they apply special pressure to my fore brow and bridge.

The final reason why an Autistic might stim is for self-expression. Stimming is the easiest way for me to express myself and my emotions and feelings. I stim differently depending on how I’m feeling. When I’m generally happy, my hands tend to be bouncier, and my motions more crisp when I stim. When I’m generally not happy, my hands tend to be more chaotic, hurried, and jerky.

Stimming can occur with all major external senses. In this excellent video, Amethyst discusses in more detail the three main reasons Autistics stim, as well as seven senses that Autistics might use when stimming: taste, touch, smell, hearing, sight, proprioception, and vestibular. I’d like to briefly mention two more senses that Autistics, myself included, stimulate–thermoception and nociception. Thermoception is how we sense and process heat, or the absence of heat. I’m really heat sensitive, but have difficulty feeling cold. To me, cold things make me feel blissfully numb, and it’s a sensory experience that helps me regulate myself, as well as one that seek out just because it makes me feel good. Nociception is how we sense pain, or the lack of pain, and a sense I often stimulate when I’m extremely stressed or angered. Usually I will intensely dig my fingernails into my skin, or slap my arms extremely hard. At times, I’ll even bite my hands. Allistics often get worried and afraid for me when I engage in this, but my intention isn’t to harm or hurt or kill myself. Rather, the pain that I feel helps me deal with the outside stress.

A young, male-appearing kid, with short black hair and brown skin looks at the camera while waving his hands.
A young, male-appearing kid, with short black hair and brown skin looks at the camera while waving his hands.

This leads to the main point of this post. Allistics often misunderstand stimming, and discourage it in a number of formal and informal ways.

For example, as a kid, my family would make me sit on my hands, or make me restrain my body in other ways to stop from stimming. At times, they even told me it made them not want to be around me, and that if I couldn’t stop fidgeting, I wouldn’t have any friends.

In school, I was told not to stim (fidget was their word) because it was considered disruptive. I was never overtly punished, for which I’m truly fortunate–too many Autistics have to suffer “quiet hands” reminders–but it was very clearly not tolerated.

I developed a lot of shame around stimming, something Amethyst also did and talks about in the video, as well as many other Autistics. For years, I hated my innate need to move or engage with the sensory world differently than others.

But last October, well before I had begun to believe I might be Autistics. I told my therapists about how I would in the private of my bedroom or the bathroom fidget or flap or even, if no one was around, jump or spin, and she told me to pursue this as a stress release. It felt terrifying to try it outside of my private areas. I remember flapping in the elevator at work for the first time and having a mini-freak out about whether or not there were security cameras in there, and if the security folks where watching me right now in disbelief.

As I began to realize that I was Autistic, and there was a reason for this, and that others were dealing with similar issues I was, and that stimming was something that many engaged in proudly, it became empowering for me to stim. It felt like a beautiful form of self-acceptance, and a fuck you to the world for trying to get me to stop (I’m a rebel, what can I say?) I’m so much better able to deal with my outside world and environment in large part because I feel much more free to express my feelings and regulate my emotions in the way that is most natural to me.

Allyship Tip: If you consider yourself an Autistic ally, make sure that you and the spaces you occupy are as stim positive or neutral as possible. Don’t stare at us. If you’re curious, ask questions politely, but many of us still have a lot of shame to work through with regards to stimming, and folks staring at us can make us relive that pain and make us abandon stimming, which can be quite hard on us.

❤ Piija Suoynna Riistia

That’s Not What Makes Me Crazy, Part 1

Trigger Warnings: expletives, ableist language

This morning, I had a lot of decisions to make–to go to the gym (the right decision), or to stay home (the lazy decision); to get breakfast from Nob Hill (the cheaper option) or Whole Foods (the better option); to bring my change of clothes with me to the Aquarium and change before leaving (the comfortable choice), or to keep them in the car and change when I got to my final destination (the more comfortable choice).

UN Statistics Division Map of European Regions. Shaded in blue are Northern European countries England, Iceland, Denmark, Norway, Sweden, Finland, Estonian, Latvia, and Lithuania. In turquoise are Central European countries, in green are Southern European countries, and in pink are Eastern European countries.
UN Statistics Division Map of European Regions. Shaded in blue are Northern European countries England, Iceland, Denmark, Norway, Sweden, Finland, Estonian, Latvia, and Lithuania. In turquoise are Central European countries, in green are Southern European countries, and in pink are Eastern European countries.

I was also feeling really antsy. Two days ago, a coworker had made the assertion that Estonia was in Eastern Europe, which, according to the EU, the UN, EuroVoc and nearly every reputable source, it is not. I told him it was a Northern European country, and he said I was wrong, and that he didn’t care. So I drew him a map of Europe and it’s political boundaries during a quiet few moments to show him that Estonia was not in fact in Eastern Europe, whose boundary is considered Russia, Belarus and Poland to the North. He didn’t care, and still maintained it’s in Eastern Europe. That really bugged me. And still does.

I was also thrown off by a power outage that began around 6:43 (at least, that’s when my computer’s internet failed) this morning, and was still feeling a bit stimulated after a family party last night.

So, on the way to the gym in the morning, in between belting out Alanis Morissette (LOL), I talked to myself. A lot. And I worked through some of the decisions. And I explained again my frustration that my coworker refused to listen about something on which he was clearly wrong.* As well as my frustration that the power had to fail at 6:43. And then I did some soothing self-talk to help myself get in a good mindset after the stress from last night and this morning and two days ago.

Thinking out loud can be something super helpful, even powerful, for many Autistics and me. It’s calming. It helps some of us deal with anxiety constructively. When speaking aloud perseveratively, it eases the tension that I and some others feel when those around us do or say something incorrect, and it’s not social acceptable recognize or explain their error. And it can also serve as the vector for which I and some others are most comfortable when thinking in words.

For example, when I was a kid and I was told to think about something silently and come back with a response, it was almost impossible for me to do so. I would try to think of something constructively, but I couldn’t. It was like my mind went blank. And then I would be called on to respond. The first few seconds I would falter…but once I had uttered a few words, I was right on track, and I could process a logical answer.

As I’ve gotten older, I’m able to think in words in my head much better than when I was a kid, but nonetheless, there are times when I need to speak aloud to myself. Nothing else will quell the anguish or overload I’m feeling. Sometimes I’m in the car this morning, or my bedroom, and it’s no one will know or be bothered.

But other times, I’m in public, say walking on the recreational path to my car after work, and I’m perseverating on the elderly women who got mad at me because I refused her free entry into the Aquarium with her grandchild on her deceased-of-two-year’s aunt’s more-than-a-year-long-expired-membership-card.

Work can be difficult, especially when I have to listen to someone tell me absolute bullshit, and still smile, be respectful, and take the blame for erroneous things they did, do, or continue to do, despite my and others’ reminders not to. That’s a sentiment that nearly all of my coworkers share with me from time to time. But whereas they (neurotypical by assumption) can brush the feelings off or ignore them, I can’t, at least not easily.

Speaking my frustrations aloud takes the pressure in my head away, or at least lessens it. And on the bike trail for the past few months, whenever people weren’t around, I would speak to myself, working through the emotions I was feeling and their causes. It helped a lot. But as soon as I saw people, I’d shut up. I didn’t want them to see me speak to myself.

I’ve learned over the years that talking to myself is Not Allowed. And not just in English. Talking to myself in Trianese (my 3 year old language), Gaeillans (my 11-16 year old language), Latin, Ancient Greek, Spanish and Portuguese was also Not Allowed. I found this out because my family told me multiple times for each that it bugged the fuck out of them, that it was weird, and that I needed to stop, on top of the fact that they hated that I was speaking in a language they couldn’t understand.

I still feel ashamed when I feel the urge to process words aloud. But I’m trying to work through it. Last night after a very busy day at work, I started speaking aloud. The trail was crowded with people, but I didn’t pay attention to their stares. Sometimes I spoke in English, other times in Portuguese, but in both I decompressed from the day’s stress, soothed myself, and congratulated myself for eating a good lunch.

Yes, I felt uncomfortable having people stare at me, but I also felt so much relieved being able handle the world around me in the way that felt most comfortable, and worked most effectively for me.

❤ Piija Suoynna Riistia (The blog alter ego I’ve settled on!)

Autistic Ally Tip: Try and let Autistics speak allow if they need to. And if you want them to stop, try and understand why–is it because you need silence (in which case, try and frame it as you need silence, not that you need them to shut up), or is it because you find it a bit ‘crazy’ or ‘weird’?

Related Links:

http://musingsofanaspie.com/tag/social-skills-2/page/2/

http://aspergersandmeblog.wordpress.com/2013/05/20/perseveration/

*I would have enjoyed if he had a well-structured argument to defend his assertion. The CIA world fact book, for example, lists Estonia in Eastern Europe (it’s the only reputable source to do so). Now, I have serious issues with their classification of Eastern Europe–it doesn’t include many countries conventionally included. But he could have argued that its history with Russia warranted a Eastern European labeling.