The Painfully High Price of Autistic Masking – Part 17 min read

Hello, I’m Jaime, and I’m an autistic woman.  As an autistic woman of a certain age (I’m 39), I grew up in the 1980s and 1990s when, in order to be seen as autistic, you absolutely had to be three things:

1) A child.

2) Nonverbal.

3) A boy. 

I may have fit into the category of “child” at one point in my life, but I have never been non-verbal, and I am a cisgender female.  Like many autistic women my age, I lived in a very confusing, isolating, and terrifying world when I was younger.  Since I got good grades in school (save math and gym), and I could speak and write very well, I was not immediately picked out as someone who had any type of disability. 

However, it would soon become quite apparent that I had profound difficulty in socializing, spoke quite bluntly and often in a monotone voice, avoided eye contact, had bad sensory reactions to clothing tags, certain lights, sounds, smells, and textures, and spent hours upon hours on obsessive interests. 

A Child of Monsters

When I went out to “play” with the neighborhood kids, I made up games from my own imagination usually involving something “scary” because I grew up reading R.L.  Stine novels.  For me, fun was pretending there was a monster or a stalker in the woods.  This gave me a wonderful tingling feeling of anticipation in my belly that I quickly became addicted to.  At first, the kids would go along with whatever game I was making up because, like most kids, they liked mystery. 

But then, they would quickly tire and grow bored and want to play “normal” games like tag, hide-and-seek, and sports.  I was terrible at tag.  I had no physical endurance, and I would always get tagged and then be “it,” and I couldn’t catch anyone. 

I’d get so frustrated, I would just start crying or, sometimes, have a complete meltdown.  I was pretty good at hiding during hide-and-seek, but when it came time to find others, it was as though they’d slipped into a black hole somewhere. 

Sports?  Oh, no.  I had two left feet and all the coordination of a drunk moose.  Plus, when more complex games with more than a few rules to follow came up, I simply didn’t get it.  I played along as best I could but eventually was accused of cheating or pretending not to understand, so I opted out. 

Eventually, out of a combination of desperation, boredom, and fear, I inevitably went back to my “monster and mystery” games because that’s what I understood and enjoyed.  That’s when neighborhood parents became afraid of me and told my grandmother (who raised me) that they thought something was seriously wrong with me.  They didn’t want me around their kids.  Truthfully, I was mostly OK with this as I much preferred to be on my own or with people much older than me. 

Over time, I ended up regularly visiting an older lady and her dog down the street.  She was one of the few people in the neighborhood who would still interact with me. 

My Presence Could Instill Such Hatred

When I was a child and teenager, my mere presence in a room could instill such hatred and disgust from others.  I didn’t even have to do anything.  I just had to exist.  I would come to understand much later in my life that it was because I apparently had the worst case of “resting bitch face” in the world and was always giving people what they perceived to be “dirty looks,” though I probably didn’t even see them!

After all, I lived in a world of my own creation, so I didn’t pay much attention to the outside world.  I certainly had no idea that my facial expressions, body language, or lack thereof were even being noticed by anyone, let alone affecting them

At the time, I also had not yet learned the concept of “appropriate” eye contact, so I stared at people with incredible intensity.  When asked a question, I would get startled and defensive, and I have since come to understand that I do not like being questioned at all.  It’s still a trigger for me to this day because my mind perceives it as an attack.

Then there was the issue of my incredibly monotone voice and lack of inflection.  While I couldn’t hear it or tell the difference between my voice and others, adults could, and they looked at me as though I was the alien in the room come to make off with their children. 

I had a couple of incidents in childhood where I’m convinced kids my age were actively trying to murder me.  In one such incident, a girl much larger than me backed me up into a railing and nearly threw me into the river below. 

In another, two girls (who were also much bigger than me) followed me home, threw huge rocks at me, cursed me, screamed at me, and spat in my face.  I remember ignoring virtually all of this as it was happening, but when I got home, I screamed and sobbed hysterically for hours and refused to get out of the shower. 

Blending In to Survive

I moved out on my own at the age of 17, and, while I was capable of landing jobs, I couldn’t keep them.  I either struggled too much to understand what was expected of me, or I was considered “rude” to customers. 

I remember that I was 24 years old when I started observing the behavior of others around me and actively trying to emulate them.  I cannot tell you how foreign, strange, wrong, and shameful this made me feel.  I also don’t have words to describe the feeling of suddenly being accepted because I had learned to emulate the neurotypicals (non-autistic people). 

It was a double-edged sword.  On the one hand, I was no longer being actively verbally abused and shunned, on the other, I was being “accepted” because I had learned to be in stealth. 

It was like there were two of me.  The real Jaime who hid in the shadows and the actress who stood in the spotlight.  I would nod and smile in the right places, stop talking if the energy in the room got uncomfortable, discuss politics, news, reality shows, and dinner.  (Dinner seemed to be a very important subject to discuss at work during lunchtime!) Also, the weather.  You could never go wrong talking about the weather. 

Over time, my emulations became a part of who I was as a person.  No longer did I have to force my face, body, and voice to behave in neurotypical ways because it was like I had learned a foreign language and could speak it fluently. 

However, like anyone who learns a foreign language, my “native language” (autistic) would come out whenever I was feeling stressed or overwhelmed.  For example, imagine an Italian or a Spanish person speaking English, but something really gets on their nerves, and they end up yelling in their native tongue because that is how they best express themselves.  It’s who they really are. 

Well, that’s me as an autistic person.  Neurotypical is my second language, not my first, and if I get very upset, you will experience what seems like an abrupt personality change from me.  In reality, I am simply unable to hold the mask up any longer. 

The Alien Who Would Be Human

When I was about 30 years old, I dropped everything in my life to run away with someone I thought loved me very deeply.  This incredibly traumatic relationship nearly ended me, and it took me a very long time to claw my way back to the light.  One thing I did learn while in this relationship was that I hadn’t been me in a very long time. 

I had lived the illusion so well that I’d started to believe it.  While I knew from studying and interacting with other autistic people online that I was on the spectrum, I still didn’t fully grasp what that meant for me.

Now, I want to put my arms around that younger version of me and say, “No.  No.  God, no.  You are in WAY over your head!”

I had no idea how vulnerable, lost, confused, or ill-equipped I was emotionally to deal with life away from everything I had ever known (structure, routine, work, school, family, friends), and it was then that my autistic traits came out in full force. 

When I finally left the relationship, I had a complete nervous breakdown.  I didn’t know who I was anymore at all.  I was traumatized, lost, alone, and very confused.  My mind just snapped. 

Medication = Normal?

After the breakdown, I was finally, blessedly diagnosed with autism spectrum disorder.  It was the most beautifully validating experience of my life. I started dialectical behavior therapy (DBT), got stabilized on medication, and began the process of healing and recovery. 

Click here to read part 2, wherein I describe my masking in detail and what that ended up doing to my life, my health, and my psyche.)

Originally published on www.itoldyouiwassick.com.

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