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The Painfully High Price of Autistic Masking

By January 28, 2019 March 27th, 2019 Asperger's Syndrome, Personal Stories

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” even 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, and I certainly had no idea that my facial expressions, body language, or lack thereof were even being noticed by anyone, let alone affecting them.

I, also, at the time, 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 spit 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, when, 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. I began socializing more and spending time with friends and family that I hadn’t spent time with in years.

I learned and grew, but something was still wrong. At first, it was the little comments people would make. “You sure bounced back quickly.” “Well, you’re doing alright now.” Then it was the way certain family members would treat me. The looks they would give me, the disbelief in something I was confused about, the reaction to my not being able to understand how to play a card game or comprehend something they were trying to tell me.

Wait,” I thought. “This has been resolved. What’s happening?” I knew they knew I’m a diagnosed autistic with PTSD and OCD as well as physical health problems like celiac disease, joint hypermobility, and diverticulosis.

The Mask Was Still There

I’m very open about being autistic on my social media, but, for some reason, the fact that my brain is neurologically wired differently missed those who spent only short amounts of time with me with months of intervals between.

The mask was still there, only this time, I was using it consciously not to hide, but to make people feel more comfortable around me. I’d toned down my bluntness, adjusted my body language, learned to look at the bridge of people’s noses when they talked, and steeled myself against sensory experiences that triggered me to avoid triggering others. I stopped myself from doing any stimming (self-stimulatory behavior for emotional regulation) around them. I felt like this was a fair compromise to make, and it made interactions smoother and more enjoyable. Well, for them, anyway.

For me, it was only when I got into my car to leave that I could breathe and be myself again. I thought they knew that. I really thought they knew what an effort it was for me to adjust my behavior so as not to offend or call unnecessary attention to myself, but they did not. They were FOOLED by the mask. They thought that was the REAL ME.

You’re Not Autistic.”

About a month ago, I was asked to go to a few parties for certain family members. I told the person who invited me that I had to bow out of at least one of them because going to three parties in such a short amount of time would “destroy” me. The person who read the message became incredibly offended and told me that I really had problems and not to bother coming because they didn’t want to DESTROY me.

When I tried to explain to the person what I meant by “destroy” (worsening of OCD and PTSD symptoms, plus sensory overload due to my being autistic), they shot back with “You’re not autistic”.

I haven’t been that hurt, enraged, or out of control for a very long time since my recovery began. I was terrified of myself in that moment. I started shaking and crying and even laughing like a lunatic. I had to call the crisis center where I go for therapy, and they spent 30 minutes talking me down. I was hyperventilating and seeing red, and I was genuinely scared I was going to have to check myself back into the hospital.

I Will No Longer Wear a Mask

A few weeks after this incident (and after considering many others that have happened over the past 4 years that have been dangerous for my mental health), I decided to distance myself completely from these specific family members. As much as it hurts me to do it, I will no longer be seeing them.

I really didn’t think anybody was “fooled” by my mask. I thought it was understood that I was toning myself down a bit in order to make everyone else comfortable. This was my gift to them. It was not meant to be taken as my actual personality.

I accept responsibility for my role in this misunderstanding. I wore the mask so expertly that even my professional diagnosis wasn’t taken seriously by these particular individuals.

I mistakenly believed people knew exactly how much it took out of me to be at social events. I had no idea that these individuals believed I was a fully-recovered human with no discernable symptoms or problems just because I managed to morph into a neurotypical-passing human for a few hours.

Well, that’s the painfully high price of autistic masking. Eventually, you become so good at it that people who may have doubted your struggles in the first place eventually don’t believe you at all.

It’s Time to Say Goodbye

So, I’m done. That isn’t to say that I won’t use what I believe to be appropriate social behavior when around others, but I will not stop myself from stimming, staring into thin air when I need a sensory break, crying, taking some space, etc., because I will be damned if another person in my life actually believes that I’m “fine” just because I’ve learned to pass for a couple of hours.

That is not only dangerous for my mental health, but it does nothing to foster genuine connections with other human beings.

This is the lesson I have learned. No more mask. Just me. I am an autistic woman, and I live with all the struggles and strengths any neurodiverse person does. If you do not believe me, find the door, leave, and don’t ever look back. Because I did not claw my way this far out of the pit for anybody to throw me back into it again.

Resources for Autistic Women

Thankfully, there are some amazing books out there that can help women on the spectrum learn how to cope and manage in a neurotypical world. Click on the links below to check out my recommendations.

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