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masking autism

  • Seminarverwaltung Support
  • 17.01.2020
  • living with autism




In my first post I mentioned „masking“ as being a big part of being autistic, but I am pretty sure most people won’t get what that is, means or looks like


I will start to explain this with situations even „normal“ people mask

- and no I am not talking about Halloween or carnival ;)


Think of class-reunion, weddings , going to the opera, baby showers even funerals

Masking is basically slipping into social requirements / roles of an event

And again I am not (only) talking about the dress-code of what you need to wear

but the “social-dress code” of it

Like no matter how extroverted fun and outgoing you are and love to giggle with your girl friends you wouldn’t show that behavior in an opera, because you know it would be frowned upon at least

Same goes for the other events, there are certain “rules” that you have to follow and “adapt your personality” to the given situation

Some might better understand masking in the context of different “roles” they have to play with people in their life - meaning how the best friend sees a very different version of you than your mother would when she visits : you would mask parts of you and your life, you know your mum wouldn’t like to see or  hear about



So please think of that feeling - trying to follow the "social dress-codes" and rules and hiding traits of your personality

but having to do it with every social interaction you have - every day ! (All year long)


Because this is what masking feels like if you are autistic - only i don’t even know or get the rules i am trying to obey


hiding my autistic traits - that is what masking is




eye contact

I do hate to make eye contact but people react to you (badly) if you avoid it

I learned to either “look through them”, meaning pretending to look in their faces but blocking the image from your mind or trying to find some interesting detail you can handle and bear to look at,

like eyeshadow or even a freckle on the nose

Most likely I can only make and hold eye contact if a person is well familiar or I feel very safe with

But if am able to take a look I might get obsessed again

(but seriously how could I not! those colors and crystal-shapes in them sometimes,

they remind me of looking into a kaleidoscope as a child!)

I would get lost in those details and holding eye contact longer than people feel comfortable with

and again they would react to me - for staring





Mimic and facial expression


I do not have facial expressions or mimic at all on my own !!!

If I don’t actively activate it my face is completely „blank“

Almost everything you see on my face is created

if I do have facial reactions on my own, they are uncontrolled and probably to much,

looking like grimace

I often read reactions to it out of people’s faces but I have no idea what my own face is showing in that moment

I can’t count how many times I am perceived rude, unfriendly, pissed or very sad but I simply don’t display any emotion on my face intentionally - so whatever my face is doing and showing - again : I have no idea !!!

even if there is mirror to show me I can’t / don’t like to look in one

And trust me if I want you to read something off my face it will be crystal clear or better put exaggerated

if I am just a little upset it might looks like I am going to kill you right that second


It also affects acknowledging or greeting people

I either don’t realize your greeting face at all or my created answering smile is just a few seconds too late

so you already think it’s fake or I am mad at you

Let me tell you this part of being autistic is frustrating as hell because

I CAN'T HELP IT!






Communication and social skills


Well I don’t have those either and here again I create and fake whatever I think is needed in the situation

Finding the right words, tone and volume as well as reading the right social "dress code" is exhausting

-but having to interact with me, for you probably too-

I am most likely too much, too loud, speaking without any break or saying nothing for too long,

with you thinking I am not listening but that is exactly what I do and why I don’t speak myself

All this is me already trying as hard as I can


You could help me with saying something in those situations because I won’t be aware what I am doing wrong otherwise - only afterwards I can reflect

but then the „harm is done“ so to speak


If it’s possible I will prepare a script beforehand

for days before an interview, date or appointment I will sort out what to say and what to answer

(to anything / any question that might comes up)

"There is no second Chance for the first impression - so I rehearse mine as much as possible"

It’s really rare that I am able to connect and feel safe enough with someone so that communication and socializing becomes easy as breathing - in these moments my mind is at ease and I "don’t know what I am thinking before I hear what I am saying" ;)

It then will be a natural flow of speaking and listening, without  feeling awkward with silence

With my ex boyfriend we called it our “world-peace-moments” and this is exactly how it felt

They were rare as well but made up for most of the war and fighting in our relationship

I still don’t know what it was about the last guy I was dating but I never had to mask with him,

right from the beginning i felt so “myself” around him and for me this is something real special






Senses


My senses are more sensitive than yours I probably see more detail, hear more from the background, are more affected by temperature and smell / taste things more intense - all of it at the same time-

So I have to avoid situations and locations where sensory overload is more likely

If I am overwhelmed with sensory input, you being loud or touching me without warning can have tremendous consequences!

It’s still the hardest part describing how it feels like, having all senses heightened - all the time

and how even little things in my surroundings - that you probably don’t even realize - affect me so strongly!

How every casual touch of you goes bone deep

What most people don’t get is how even the most simple things, like taking a shower, is sensory-hell for me and I literally can’t take it

But as I said before it can also be fun to have those more intense sensory experiences but I still need to mask most of them because you simply wouldn’t understand how things feel so much different for me






Stimming (=Stimulation of senses to calm down/ reduce stress )


If you watched „Atypical“ on Netflix you know already what stimming can look like

but every autistic person has its own stimming methods

mine are depending on the sensory input I want to calm down from

they vary from counting/ repeating in my head, playing with my fingers or things in my hands, tapping my leg, holding my knees and rocking, humming/singing to myself

and more severe ones like stabbing my nails into my ribs, covering my eyes or ears and crying / screaming, banging my head on walls or hitting things (...)

This is a reaction to sensory overload or being overwhelmed in a situation

I probably don’t need to explain why showing this autistic behavior would draw attention to you in public

But just because I try to avoid stimming as much as possible when people are watching, doesn’t mean those situations are better - they are way worse !!!

If I could just be humming in a Supermarket to reduce stress, without creating more by the reaction to it -

I probably wouldn’t end up in a meltdown or shutdown as soon I get home

because I am exhausted from masking the NEED for stimming




Routine


EVERYTHING I do - I always do it in the (exact) same way - to help me function

If it where up to me I would like to be able to do this also in every social interaction but “normal” people wouldn’t understand if you want to meet the same day of the week, at the same time, in the same location every time you get together

And there are so many appointments where you are unable to set the date, time or location yourself

That means I am forced to often deal with change and planning ahead for new situations

I am probably very stressed out by your idea to try out a new restaurant/bar or spontaneously doing something else than we agreed on or bringing someone with you that I don’t know (well)

autistic people hate change - period!

Same goes if you interfere with things at my home - you probably just want to help,

when for example putting your dirty dish in my sink or dishwasher but you are messing with my routine instead - and me - so I am most likely freaking out about it (even if it’s just on the inside)

I can make it seem like I am acting spontaneously but I am just using an other prepared option that I worked out beforehand ;)






Memory


As I said my brain works different and my memory is affected by the constant overload of information

So masking my lack of short term memory and with that always forgetting stuff, is almost a full time job!

Luckily as an autist you never have many friends otherwise I would need to start with index cards

People get upset and hurt because they think i forget because I don’t listen or don’t care about them

but that’s not true at all!

I just can’t remember and I would need you to repeat it !

(And even though I can’t recall it on my own I do know if I heard that info before or not)





Facial blindness


An other side effect of autism is that i suffer facial blindness

finding you in a crowded or unknown place is almost impossible for me because i literally can’t see you / recognize your face!

So I would look for your body size or hair length and color so I would need to know about your new haircut before we meet or I won’t be able to know it’s you ;)





My photographic memory is best with numbers (and shapes, signs or license plates) and seriously you have no idea how many numbers are out there if you just walk down a street !!

And if I wouldn’t actively block them from my mind - I would remember every single one of them

But with looking at the check in a restaurant - instantly and involuntary memorizing every number on it-

I would “overwrite” the info of the conversation we just had

So I am using the same masking method as with eye contact - looking but not seeing



And since we came full circle I am going to leave it as that

even though there is probably even more of my autism that I am masking

- every time of every day !



I hope you got an idea and better understand how exhausting it can be for me to try to mask the aspects of Asperger and to “act normal” - because I am not (at all!!!)






Autism is a real disability that needs to be taken as serious as any other !

It makes me incapable of so many things in life and everything so much harder



You wouldn’t expect someone in a Wheelchair to walk stairs or wouldn’t get mad at him for not doing -

or at least trying- it, you would probably even offer some help


But you can’t see autism so since I look normal - people have the expectation of me to also show “normal” behavior and performance

but it takes everything out of me to even try to meet that and mask the things I just can’t