Let's Talk About Sense, Baby.

As 90% of autistic people have a sensory processing difference (disorder) I thought it was time to talk about my journey in understanding my own sensory differences, which are considerable. Even though I have suffered from sensory issues my whole life, it was only after I found out I was autistic that I finally understood the problems that had been plaguing me for 38 years.

When I got my fibromyalgia diagnosis in 2013 (I think that was when I finally figured out that problem), I attributed all my 'heightened' senses to it. Despite knowing that fibromyalgia is a nerve and inflammation disorder, I still believed that it also contributed to my heightened hearing and smell and my visual disturbances (visual snow syndrome). The problem is, these issues didn't start when the fibromyalgia started, they started far earlier: when I was born.

The first instance my mom noticed my unusual sensory issues was when I grew hair that needed to be brushed. Teeny tiny baby me would scream at the touch of a brush on my head. This persisted and did not get better. One of my goals in life, when I was younger, was to learn how to brush my own hair so that I could control the pain. My mom's solution was just to keep my hair short. My solution was to hold the hair I was brushing tightly with one hand so that it didn't pull the roots on my head and cause the searing horrible pain that pulling strands of my hair always caused. Most of my childhood is marred by the memories of my mom brushing my hair and the pain it caused. I was constantly called too sensitive, and it "didn't hurt that much." But it did hurt that much. It hurt so much.

When I hit my teen years, in the 90s, it was a given in my town that if you were a girl, you have long hair. Pixie cuts were associated with lesbians (a not socially acceptable thing to be at the time), and as I needed to be as inconspicuous as possible (due to my already glaring differences) I grew my hair long to complete my mask. This was okay now that I was brushing my own hair. But the other problem I had was that I couldn't put it up in any form without causing that horrible pain again. To style my hair was to cause pain for the entire day. I would do it, to fit in, but would come home miserable and not understand why I was emotionally drained. Most of the time I would leave my hair down, which caused its own set of problems. Long hair and hypersensitive skin = agony.

I can't stand the sensation of loose hairs touching my skin. This presented a clothing problem. I couldn't wear any clothes that didn't have fabric where my hair landed. If there was a low back, spaghetti straps, or no sleeves, it was a no-go. I wanted to just curl up in a ball and hide under blankets so the wind couldn't move my hair against my skin. I was in a constant sensory nightmare in the summer. Can't put my hair up so it's not touching my skin because of the pain, can't have my hair down when wearing clothing exposing my skin; and, of course, trying to fit in, it was all the rage to wear spaghetti-strap camisoles in the summer, expose the tummy, with jeans. So I learned very quickly that if I wanted to be accepted I had to be in constant sensory agony. I just thought that everyone was in this sensory agony, and the slogan "beauty is pain" did not help. My simple beauty solutions were definitely painful. All I wanted to do was dress for comfort, but I also wanted to look pretty so that I could be included. The amount of time in my teens I submitted myself to sensory overload just to fit in, I can't count. No wonder I spent those years with chronic depression.

That was just the hair issues. I had other skin hypersensitivity issues that were just as nightmarish. The fact that when anyone touched me with any sort of slight pressure it felt like they were touching a bruise made for very tense interactions. The one I remember the most was my dad. He loved teasing us with physical touch, the one he did almost daily was put his fingers around our knee caps and gently squeeze. It apparently tickled all my siblings, but for me, it caused tear-inducing pain. Every time he did it, I would cry out in pain, and every time he would say "it doesn't hurt," because, with everyone else he did it too, it didn't hurt. I know he didn't mean to invalidate my feelings or senses at the time, he just wanted to include me in his love language of teasing, but being constantly told that something that hurts me, doesn't, made me feel so very invalidated. This made me just avoid sitting by him, for fear that he might want to squeeze my knee cap and cause me the pain that I "didn't feel."

I also experienced a multitude of bullying because of this hypersensitivity. A monstrous amount of people at school, once they realized they could cause me horrible pain just by poking me, poked me every chance they got. This same treatment occurred with the younger generation at my religious meetings. This torment was extremely hilarious to them, because how could a light poke in my arm cause me any sort of pain. To them, they probably didn't actually think I was in pain, but instead, I made it sound worse than it was because it annoyed me. It was torturous going to school knowing that the bullies were spreading this information around about me. Not to mention, being poked doesn't constitute bullying to teachers, only a minor annoyance that I should just ignore. I would go home most days and cry in my bed while my body felt like it had been abused by baseball bats all day. Of course, such minor touch doesn't leave any evidence behind. It was the perfect bullying tactic. Especially since it wasn't until recently that I realized that this microaggression was bullying. I thought I spent my school years blissfully without being bullied. I was very wrong, and not understanding that treatment was bullying really messes a person up, it was as if I was gaslighting myself. Then again, I learned the gaslighting phenomenon from all the people that told me I didn't feel the way I felt because how could I possibly have sensory differences from them. Internalizing that made me unable to find and use tools that would have helped me cope with my hypersensitivity. Instead, I bottled up all my dysregulation until I got home, locked my room door, and completely dissolved into a puddle of agony.

More on the skin hypersensitivity, nighttime. Oh, the torture of trying to fall asleep. Not only was hair an annoying issue while trying to sleep (can't tie it in a braid because it hurts, but all the hair is just flying willy-nilly and annoying my skin!), but my own breath became a problem. I cannot tolerate at all someone breathing on my skin, not even if it is me. Winter, no problem, wear long sleeves so I don't feel my breathing on my arms, golden; but summer. Oh, summer. No air conditioning, too hot, barely wanting to wear a nightgown, let alone sheets or blankets. It was a sensory nightmare. I needed to have a sheet on me at all times; because I needed to wrap my arms in something to keep my breath from moving the hairs on my arms and aggravating me to insomnia. I also couldn't sleep without a sheet on me, regardless of the heat, because it protected my body from sudden gusts of air from the open windows. I'm almost certain the reason I stayed up until 2 or 3 in the morning even though I had to get up again at 7, was because of the breathing/skin nightmare that was sleeping. I still have this problem, but at least now I have AC and I can cool my house down to whatever temperature I need to feel comfortable in my sheet folded in origami preciseness to keep my skin away from my breath and my skin not in contact with other parts of my skin (also an intolerable sensation). I also sleep with a CPAP machine on my face, which keeps my breath contained away from my skin.

I can only be happy that clothing has never been a sensory nightmare for me. I think it's because of its predictableness. It protects me from the sudden changes in the air around me, from the tiny bugs that land on my arm hairs that I can feel, the wind of a person moving the hair on my arms, and the contact of another person's skin against my own - clothing is a nice relief from all the touch I cannot stand.

Shall we talk about sound next? This is a hypersensitivity I just didn't know I had, at all. Sure I heard sounds that other people couldn't, but I just thought everyone else wasn't paying attention. Sure there were sounds that aggravated me to the point of insanity, like rattling parts in a car, the refrigerator, the computer noises, the HVAC, the sound of breathing, the sound of chewing, the sound of... well the list is long. Sure all of the noise that I was exposed to all day slowly and steadily poked at the wasp nest that was my thoughts until I exploded at someone for talking, chewing, tapping, or some other noise. Sure I spent all my time trying to control the sound I heard by covering it over with loud music, thunderstorm noise, or some other sound I had control over. Sure I couldn't use earplugs because the sound of my own heartbeat drove me insane. That was just normal. Everyone else didn't seem bothered by it, so why should I think that what I was hearing was any different? It also didn't help that silence bothered me as much as too many chaotic sounds because I suffer from tinnitus, which means if there isn't some sound around me, I hear a constant unending ringing. The number of headaches, migraines, and irritable outbursts that happened because of dysregulation in regard to sound was numerous. It was always exasperating as well because no one understood that I had dysregulation and that the constant bombardment on my senses was the cause of my angry outbursts, I just seemed like a "drama-queen," "attention-seeker," "oversensitive," etc., etc., etc. I didn't have the words or knowledge I needed to convey what I was feeling properly or even the understanding that my sensory experience was different from everyone around me.

When I found out that noise-cancelling headphones were a thing, I had it in my mind that I couldn't use them because I needed to hear everything. I now realize this probably stems from the traumatic accident that happened in my town where a college student was walking down the street with headphones on and couldn't hear the helicopter that eventually crashed on top of him and killed him. In a small town, something like that happening really sticks with you. Especially since all the adults in the town wanted headphone use banned due to this incident. I internalized that. I also believed that noise-cancelling meant literally all noise cancelled. When you have hypersensitive hearing, that is not the case. In fact, I can hear and understand people much better now that I started wearing noise-cancelling headphones whenever I am outside of my house because it cancels all that extra background noise my own brain has trouble getting rid of or deciphering. This is a game-changer for me. So much so that I grieve for the little girl that didn't have this aid to get her through life until she was 38 years old. I grieve because maybe I would have been able to enjoy being at the lake, or at a restaurant, or at the park, or walking down the street. All those painful experiences could have been happy memories instead.

We have now come to smell. The only heightened sense that I've always loved - wait... Never mind... Perfume. Perfume is the bane of my olfactory existence. Come to think of it, pungent smells are probably the reason I adopted a flannel sheet as my 'Binky.' Good ole Binky. Binky (the flannel sheet) went with me everywhere until I was 9 years old (I think). Binky was security. Binky was the ultimate stim toy. Binky saved my young life from sensory overload on a daily basis. Binky was every stim toy rolled into one. A soft-touchy thing for my poor skin, dark-makey thing for my eyes, noise-blocky thing for my ears, and sweet sweet-smelly thing for my nose. Oh, how I loved to smoosh my nose into Binky and just inhale deeply and it was so much better if Binky was icy cold. I used to put Binky in the freezer so that I could smell their cold freshness. Just thinking about inhaling the smell of icy cold Binky relaxes me instantly. Oh Binky, I miss thee.

Losing Binky was a slow traumatic process that my mom has admitted she wished she hadn't put me through. She had done it for the same reason that I did anything before I knew about my autism, to make me look normal. When it became apparent to my mom I had no desire to give up Binky, not even if I was teased relentlessly for using it at the age of 9, she started cutting its size down when she took it for washing. When she told me it shrunk in the wash, I believed her. I also never wanted to wash Binky again. Every time it was wash time for Binky, little Meg made sure Binky was not around. Binky got really dirty, and then snatched, and shrunk in a repeated terrifying nightmare until Binky was barely the size of a placemat. Then it was time for Binky to go. I'm still very very sad I don't have Binky.

Binky was my first stim toy. No one knew it was my stim toy. No one knew I needed to stim to keep regulated. What I've learned now, thinking back on Binky through the autism lens, is that my favourite stim is associated with smell. Smell stims almost instantly regulate me. The inverse is also true, strong bad smells almost instantly dysregulate me.

Some of my weirdest interactions were from smell stimming. The conversations about my strangeness in regards to my smelling books still goes on to this day. Not all books smell good mind you, but the musty smell of dried mould on acid-eaten paper might be one of the better smells out there; the smell of an old book. I'm extremely fond of forest smells, petrichor (the smell of dirt being hit by rain), honey, and my cats. I used to smell my niece's head when she was a baby because it smelled like honey. It was the only reason I liked holding her. I'm pretty sure I didn't get to hold her very often for this same reason.

Now that I learned that smelling things is a stim for me and helps regulate my sensory overload, I have been trying to get back into using objects to help me with this. I trained my cats to sit on my chest so I can nuzzle my nose into their fur, I use Tsum Tsum toys to hold essential oils of forest smells that I can use as a touch stim and a smell stim, and I still find myself grabbing the blankets or my sleeve and using them for olfactory stimulation all the time. I'm learning to embrace this, despite the unusual nature of it, and I'm trying to encourage myself to be okay doing it in front of people because I'm tired of always being the one uncomfortable in public settings, I think I'll let the allistic people feel the discomfort for a while.

I'm going to embrace my nekomimi, headphone-wearing, smell-stimming self, in all her unique glory.

We'll get to sight and taste in another post.