This post is inspired by a campaign on autistic masking that was created by an incredible group of autistic advocates to educate about the topic. For more information on masking, read the #TakeTheMaskOff campaign which is a series that launches next week (July 23, 2018) and will last for six weeks. It will include blog posts, videos, and much more. Please visit Facebook: @TheAutisticAdvocate to learn more.
For those not familiar, masking is a term used in the autism community to refer to how we mirror and mimic nuerotypicals. It also refers to how we suppress certain autistic traits in social situations to be more accepted. I want to share my experiences with this as someone who was diagnosed with ASD at 5 years old and carried many different labels before neurologists were able to identify I was autistic. That is the perspective I am writing from. I speak only from my feelings and the different ways this has impacted me, both negatively and positively so that my readers can have a better understanding of the nuances of this topic.
First, I think it is important to remember that to some extent, everyone masks. We all wear different masks for different social situations no matter who we are. For example, the person we present to the world at work is different than who we are in our intimate relationships at home. This is simply a social structure and how people are able to become a part of a larger group. The difference for me was, I did not inherently know these cues. I could not read other people’s masks and I most certainly did not know how I fit into various social situations. I was constantly bombarded with sensory. By the time I actually had the energy to start noticing people, social groups had already been formed. Everyone else was naturally mirroring. I was documenting, learning, memorizing, and then mirroring. I was also taking an extra step than everyone else.
That extra step was suppression.
Imagine a world where you have a radio on high volume with no control or way to turn it down even slightly that is constantly blaring in your ears. Now imagine that you must go to school, work, and out with friends with this blaring radio. No one else can hear it or see it. All they can see is you and any socially unacceptable behavior you do caused by the loud radio in order to deal with it, or in some cases things you miss because the radio drowns out so much around you. And because no one else can hear it you must every single day suppress the anxiety and overwhelming feelings you have until you are in a safe space to deal with all of your emotions from the overloaded senses. For a time, you could learn to do this quite well. Even achieve a sense of normal. Maybe get out of your own head by mirroring the actions of other people and in a way forget about the radio. But eventually, that radio is going to get on your last nerve. Eventually, you won’t be able to handle it anymore.
As an autistic child I had no desire to be a part of a social group or even have friends. This was true even when I was around other autistic people in social skills groups. I am the perfect example of parallel play. Not caring to associate with anyone no matter who they were, happy in my own world. I could not read the social cues of any person, even those like me. These words will sound sad to some, but I want to assure you I didn’t mind not having friends. To me, I am content in my own methodical universe.
I knew the trade-off of having friends. The price for admission for entering their world was to always be interpreting a foreign language that would never come naturally to me, no matter how hard I tried. I would always be mentally exhausted from both dealing with sensory overload and attempting to interact with other people. I was already expending 100% of my energy on finding ways to be happy and to cope with that radio I talked about before. Now I would have to put in another 100% effort into socialization and interpretation.
I did not pick up on any social cues, even from other autistic people. So either way, I would need to be learning a language. Because no nonverbal social language is natural to me, I do not have my own. My natural social language is none. To enter this world I would need to learn one. The neurotypical one, because it is by far the most common and I did not have the energy to learn more than that. Which meant I didn’t have the energy to learn about myself. I would need to leave my own world and enter into this loud and overstimulating one.
The question I had to decide was this: is it worth it?
Something within me made me want to try. Maybe I would burn out, but I am human so I want to be a part of this world. So I tried. And I started mirroring social interaction and masking my overload. A secret struggle that eventually no one could see. With 80% of human language being nonverbal, you can imagine just how much information I was needing to memorize and place. In many ways I am amazed at my memory ability.
However, something strange did happen to me the more I masked. Throughout my childhood I was often unhappy because I could not control any sensory and melted down regularly as a result. As I worked on integrating sensory and as I mirrored, in a way the mirroring started to help my sensory. Because I was not as focused on it. It pulled me out of my overwhelming world. And for just a moment, there were times where masking was so second nature, I didn’t experience the harder autism symptoms. I was not as disassociated with the world and able to get out of my own head so to speak. But there is a flip side. Now as an adult, I find more and more that when I am stressed or tired I can barely contain the overwhelming feelings I have. Often I have trouble identifying my own needs. And I’m left to wonder when my masking container will finally burst.
There have been times in my adult life where I am unsure of my true personality because I mirrored everything in order to be a part of this world. What about me is real? Neurotypical children also mirror and copy their friends’ interests in development. But here’s the key difference: not only was I mirroring, I was not naturally noticing the social cues and also always constantly suppressing the overload I felt. That’s an exhausting task. And an extra step more than the “normal” social masks typical people may wear everyday. Autistic masking is the masking of our daily overload. Without a safe outlet or space to be ourselves, this becomes dangerous. It is extremely important to give autistic children and adults a safe place to be themselves for this reason.
Eventually, I also started to wonder if I was even still autistic because I mask so incredibly well. I have masked to the point where I don’t even know my own needs sometimes. It’s not that I don’t struggle enormously with my sensory everyday, it’s that I am so good at masking I have wondered if I even have the same needs for myself as I once did. Do I deserve support? Recently, I took another formal test for testing accommodations. Even the person administering it was doubtful, thinking that I was exaggerating. What happened astonished me. My results were exactly the same as when I was 5 years old.
It meant that no matter how well I mask, autism does not disappear. I may trick society into not seeing it, learn every social cue, and even fool myself. But deep down it’s all still there. All the struggles and the onslaughts. And so suppressed that when they burst, it leads to complete burnout.
To some degree I do believe it is okay for humanity to mirror each other and behave certain ways in certain situations. This is how society functions and stays safe. What is difficult is that autistic people do more than just that and not all of us have a safe outlet to be us. That means for some, masking is 24/7. Additionally, for me masking is yet another learned skill. One that takes an absorbent amount of energy. Because I am not just conforming my behavior to the proper social situation, I am manually interpreting what behavior to use and simultaneously suppressing my meltdowns.
I do feel I have a real personality even though I mirrored. Because I mirrored the things that interested me and that I truly like. I picked pieces of people I connected with best to form who I am. In a way, many of us do.
I used the mirroring and masking to protect myself from the sensory onslaughts in a way. Yes, it expends a lot of energy, but everything I do to cope in life expends tremendous amounts of energy. At this point in my life I don’t consider my masks separate from me, just as I don’t consider the blaring radio I can never turn down separate from me. It’s all part of who I am. I don’t feel fabricated. But I do feel exhausted. And therein lies the danger.
But it’s what I paid to enter this social world. I would have had to pay that anywhere in any culture. I could have stayed on the edge of the playground my whole life never noticing another person, perfectly content. I took the jump full force into this world to see what friendships and socialization had to offer me. Everyone else craves social interaction. Surely there is a reason. And I have found what I never thought possible; I actually can enjoy socialization and friendhsips now. But at a cost.
So again I ask…was it worth it?