Friday, April 5, 2019

"Why can't you just go back to masking?" If you ask this question, you have no idea what it is like...

Have you ever been in a situation where someone tried to control what your emotional experience looks like?
For me, the answer is, yes, I have, but without being aware of it.  You see, I tried to control my own behavior because it was what I thought i had to do. I later learned that it is called masking and it is kind of like putting on a show all the time...well, that is, if the show is being performed in a foreign language, and the venue and scenery both change constantly without warning, and the audience is hostile and no matter what you do, it always seems to appear that the other actors and actresses cast in the show are waiting for you... perhaps it's your line? Perhaps you're supposed to exit stage left? Perhaps this moment of silence is simply written into the script? And you never know how your performance was rated or received, except for the fact that you keep on getting asked to play this part.  It's doing things you know you are supposed to do because you have seen them done multiple times in X situation so long as person Y says Z.  It is a long and exhausting script of which you have no understanding and it is further complicated by the fact that hardly any of the lines or plot action are natural responses for you or what you would have predicted based on what you see and how you interpret the world.  This act takes constant vigilance and control and effort and it is not only exhausting, but extremely damaging as well. It is damaging physically, mentally and emotionally.  It wears you down and drains your cognitive energy and resources; it makes you feel physically weak and exhausted; and it reinforces to you that you cannot be you - that your natural ways are not acceptable and that the world would rather suck the life out of you each day than experience your authentic self.  That part might be the most damaging of all. 

Opening act and beyond:

Growing up, I was undiagnosed - in part because I could do this masking thing very well when needed - in part because far less was known about Autism, especially for girls, but also in part because of luck.  My life and the environment in which i existed lined up with my needs really, really well.  My mother is a professor of exercise science and I was kept very active and she never viewed my need to move or do my own thing as a problem - and she encouraged it and facilitated it. I played high-level, competitive soccer from 4th grade on and I was constantly training.  At the peak of my soccer career, I would have multiple practices per day - weight lifting, running, team training, goalkeeper training…and games…for three different teams.  This was my life and this was all I knew.  Every day consisted of constant bursts of physical activity within a very rigid, highly predictable, schedule that was set months in advance. Even my social interactions were very predictable and safe in that they were always centered around soccer and for set amounts of time. Seriously..I truly miss being in environments when people get in trouble for idle chit-chat and side conversations unrelated to the task…. But any way, I digress… I was very protected and, unknowingly, well-regulated because of the way my life happened to be, and also I am sure, because these things felt so good and so right to me that I likely sought them out and I was not turned away from them. 

When I started my first full-time job, I tried to do all of the things I knew you were supposed to do being a “professional."  In doing so, the time I spent outside running around, moving and/or at peace in my own head was dramatically decreased and only a few weeks in, I was not in good shape at all and I did not know what was wrong.  It was like I could not cope with working. It wasn’t the work itself - I could do the work very easily and was relieved when I was left alone to do just that, but meetings, and sitting in offices and being around people with so much face time and all these new hierarchies and humans who wanted to chat about other humans and the weather and the shirt they purchased over the weekend…it all seemed like hell to me and made me absolutely miserable.  Not just disillusioned or irritated either - much worse -  I would come home and either sit in complete darkness and silence and go to sleep immediately at 5 pm for 18 hours straight, OR I would throw things and kick things and break things.  It would be like all this raging energy filling me up to the brim and any little thing could just cause an all out eruption. This happened a lot, and I used to sit and wonder why I could not do it.  How could everyone just sit there and be totally fine and I could not?  Was I depressed? Was I suicidal? I didn’t think that I was, but I knew something was really, really wrong. One day, I came home totally at capacity, and I was pacing around, so stressed, digging my nails into my head, feeling like I needed to destroy something and I could hear my neighbor’s TV through the wall and I ran upstairs to my room to try to get away and to block it out, and I could not escape the noise. It felt like being trapped with no where to go - no escape. The world became a blur; my vision looked like a windshield in the pouring rain with no wipers... and then, finally, a huge emotional release.  In that melt down, I experience almost a blind rage, so at first, I only knew I had exploded.  I did not know how.  But then it became clear -  I had kicked my bedroom door so hard that I broke through it.  And I collapsed in my bed and slept for many many hours. 

Much needed plot twist!

Luckily, after several more weeks keeping it in, I eventually ended up telling an OT (and very trusted individual) about this by sending a picture of what I had done to my door, and noting my struggles with work.  Now I know my sensory needs and that I need intense physical input constantly throughout the day.  Now I lift weights in the morning, run or lift again in the middle of the day, go for walks when needed, work from home as much as possible to limit face time and exposure to office environments, and use other tools and strategies throughout my day to make sure I am getting what I need. This is a shortened version, but learning that I am autistic and all about my sensory differences, and learning about masking by reading the experiences of other autistics made me realize that I had those physical outlets I described before over the course of my entire life up until that major transition, and that my social situations and total face-time, were all so much less, so controlled and so very predictable…and so I rarely got to such explosive points.  I was protected. It is not that I don’t still have challenges or that I never get to points where I am feeling on edge or ready to explode.  I still have melt downs and shut downs and lack awareness in these more complex environments…but now I have tools and strategies and I understand the importance of those things I did growing up.  Perhaps most importantly of all, it cannot be understated that they are needs, not privileges or rewards or bonuses if I have time.  it doesn’t work to say “after I get through this meeting, I’ll get to go to the gym!"  it is, "I need to bring myself down with some weight training if I want to be able to sit through and contribute to this meeting." This is critical for autistics of all ages! Their needs should not be held hostage from them until they can endure some other task someone else thinks is more important for some set amount of time.  Help us to regulate and then watch us shine!

Don't tell me to go back to masking... 

That is a rather long answer to say, that the social world and the way it is set up and the way it is so dismissive of differences, all tried to control my behavior.  Norms and scripts I learned and observations I made all controlled my behavior.  I controlled my behavior even though I could not explain they WHYs of those norms and scripts and expectations I had memorized.  People telling me “that’s just life” and “that’s just the way it is” or who made me think I was deficient or not capable if I could not do as everyone else…all controlled my behavior, or ensured that I felt I needed to control my own behavior. Over time, it doesn’t just feel “yucky” or tiring or boring.  It isn’t just unpleasant. It feels like living hell.  Like Total confusion and a feeling of being lost or incompetent. I truly thought the best part of my life was over and I had NOTHING to which I could look forward.  It is not just putting on a smile every so often or little white lies and some faking it here and there.  it is relentless and brutal. It wears you down, and the whole facade either breaks apart or breaks you apart.  it becomes impossible. It feels that way, i think, because, all that is natural and everything that is most genuinely and authentically you and how you interact with the world in every aspect of your life is ridiculed or dismissed as wrong or inappropriate so it just gets crushed down and forced into submission.  All of that physical energy that happens during stress AND during joy and all of life really, trying to pack that away and hold it in over and over and over so it just keeps building and piling up - eventually you just don’t have the strength and there’s no more space to pack it away anymore.  Because like I said, it is YOU and it has to come out. To control those emotional experiences and how they look is to control me and who I am. I think that people would be so disgusted with me and think I was so insensitive if I told someone they COULD NOT TALK about their emotional experiences and they had to just “control themselves” and keep it all in.  So then why is it not only okay, but encouraged and commonplace to tell me and others like me that we cannot express our emotional experiences the only ways we have ever known how or been able to do so?  The answer is…it’s not. its not okay.  it’s not right and it has to change.

1 comment:

  1. This is excellent. It will help a lot of people. Thanks for sharing. I


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