When I was very little, 4-6 years old, there was a very sweet older couple who babysat me and my siblings. They babysat a lot of the kids in the small town I grew up in. The couple had a daughter who also had a daughter. And I’m pretty sure, looking back, that the daughter’s daughter was autistic. She would often flap her hands, but every time her mother saw her flapping her hands the mother would yell at her, “Stop it! You look r——-!” The daughter would then run around pinching people instead. Apparently, to her mother, hurting other people was more socially acceptable than hand-flapping. This incident left a huge mark on me.
I know I used to flap my hands, back when I was about three or so. My mother has a picture of me with a toothbrush in one hand and the other hand is flapping so fast that it’s blurry in the photograph. I also know that I never did it again after that incident at daycare.
I don’t want to hear any opinions about how not flapping my hands might have made me less noticeably autistic or that it helped me fit in better. It didn’t. I have always been odd and, therefore, alienated by a lot of my peers.
Here I am thirty-some years later with more “socially acceptable” but somewhat harmful stims. I scratch and pick at my skin. I chew on my lip. I bite the inside of my cheek. I play with my hair. And sometimes I wear long dangly necklaces so that I have something to play with in public. Obviously, playing with my hair or a necklace isn’t harmful. When I pick at my skin and chew too much on my lips, though, it can cause serious damage.
I wonder where I would be today if I was never taught that hand-flapping was “bad”; if my stims would be less socially acceptable, but healthier for me.
If you don’t know, masking as an autistic person is when we pretend to be neurotypical in order to get along better with the rest of the world. I have met thousands of people in my life and I have willingly unmasked in front of four.
Sometimes masking can be something like not plugging my ears in a situation where the sound is too much. Sometimes it can mean making a left-hand turn because there is someone else in the car with me and not going to a place that isn’t easily accessible to me makes them call me “difficult”. Sometimes masking just means that I smile a lot to let people know that I’m interested in what they’re saying. Sometimes masking is pretending to be more outgoing or social than I feel like.
My selfies are heavy masking. When I don’t smile in public places people see me as “stuck up” “bitchy” or “bored” and constantly ask me what’s wrong.
Masking doesn’t mean that I don’t like you. Masking doesn’t mean that I’m being disingenuous. And it certainly doesn’t mean that you don’t “know” me.
Masking is exhausting and frustrating and I don’t always get it “right”, but, a lot of the time, I have no control over it. When people appear it’s a flip that turns on subconsciously. There’s a lot of trauma work involved in turning it off. Meaning, I have to work through a lot of trauma responses to make it so that I don’t mask. ‘
Ways you can help me, specifically, as an autistic person unmask:
– give me time to respond in conversation – don’t press me for eye contact – allow me the space to not smile – don’t stand too close – don’t assume I’m being difficult (some things that aren’t hard for you are hard for me) – find quieter spaces to talk if you actually want me to engage in conversation – don’t be offended if I seem “distracted”
Figuring out who I can unmask around is a lot like being a woman and trying to figure out which men I am safe alone with. There are some ways to test, but it’s mostly just a lot of trial and error. But I am trying.
This post was taken from my professional artist blog at thepopartgirl.com
When I figured out I was Autistic, I cried. But not for the reasons you think. I wasn’t worried about the stigma. I wasn’t worried about what people would think of me. I wasn’t scared of the label. I was… relieved. There was this indescribable flood of relief that just washed over me.
Thirty-some years of feeling like an alien, of not knowing what was “wrong” with me, of not understanding what I wasn’t getting “right” were gone.
I don’t post about Autism to evoke sympathy or to become some sort of spokesperson. I post about it, because I know how much easier my life would’ve been if I’d known sooner. I think about little girls who collect rocks, or have kinships with animals more than people, or who wear the same dress over and over again, or who get frustrated when plans are changed, or who don’t understand why someone would start a conversation with you just to end it on an insult. I want those little girls to grow up knowing that they can have a full life on their own terms–like I wish I would’ve known as a little girl.
And I say little girl specifically because AFAB (assigned females at birth) are much less likely to be diagnosed with Autism than their assigned male at birth counterparts. When I was 13 I was diagnosed with bipolar disorder. Just last year I was told by a psychiatrist that it was definitely a misdiagnosis. (Some of the symptoms are the same, but some psychiatrists stick to the surface and don’t look deeper for the cause.) A few months after that I went through the complete diagnostic testing for my autism diagnosis. I received the official statement of diagnosis about a month later.
I don’t think of the first 30+ years of my life as wasted. I just think that they could have been spent so much better had I known.
I hated school. I dreaded going. The start of every school year came with so much stress, so much baggage, and my only relief from that was new school supplies.
At the end of every summer, before the new school year started, I would get my school supplies. I would open each new thing very carefully. I would smell the crayons and “test” out each one on the inside of the crayon box lid.
I would sharpen all of my pencils with the new pencil sharpener and relish the crunchy sound it made. I would put the little pencil shaving flowers in my hand and run my fingertips over the tops of them. Then neatly pile all of the pencils into my pencil box. I would try to write my name as neatly as possible on the top of my pencil box, so as not to draw too much attention to it.
This love for stationary has followed me into adulthood. It’s still a very big comfort for me, stationary. I love new notebooks, new pencils. I have more notebooks than I’ll ever write in, but I keep buying more. It’s definitely a special interest.
Who’s the same? I know I’m not the only autistic person who cares this much for the sound of flipping paper or the smell of a newly printed notebook.
Being autistic is hard enough in an allistic world, but to be an autist with a chronic illness that has a long list of food items that I can’t eat is even harder.
All of my safe foods went out the window when I was diagnosed with Hashimoto’s. Of course I didn’t have my autism diagnosis then. So I didn’t know they were my safe foods, but it explains why it was so hard for me to find other things to eat.
I also have a Vitamin D deficiency. I’m going to guess that it’s because of my digestive system. I get plenty of sunlight and plenty of dairy.
This is not a “woe is me” post, though. This is a “instead of taking my vitamins and eating lunch I took a nap” post. Because, after realizing I didn’t have any fat (eg milk, coconut oil, etc.) to take my Vitamin D with, and after realizing my safe foods—gluten free chicken nuggets—weren’t available I opted for ice cream. I thought, “maybe that’s fatty enough to take my vitamins with and will give me enough protein to get through homeschool.” But when I picked up the ice cream container it was empty. My son ate all of the ice cream.
So… I went back to my bedroom, climbed under my weighted blanket, turned on Cool World—a movie I know well enough that I don’t have to pay attention to and is entertaining enough that if I want to watch it between snoozes I can—and closed my eyes. I’m so grateful that my kids are old enough that they can just go about their day without my assistance.
No lunch. Definitely no class. Just a nap.
I woke up a little while ago to the Cool World credits and my phone beeping at me. It’s time for my medication. It’s just Zyrtec and Pepcid AC, another antihistamine, but they are actually prescribed. So I’m taking them with a root beer. Look, I know it’s not the healthiest, but it’s better than not taking them at all.
Sometimes you need to just take a nap and give yourself a break.