Masking: I am not OK


If you lined up a thousand Autistic people and asked them to define Masking, I doubt that any one of them would say exactly the same thing.  The input, the reasons for doing so, might be similar or identical. The same might be said of the output, or the actual results of the Masking. They might be the same, but the actual act itself, the process and things done to keep the Mask in place, would likely be wildly different.
Having said that, because I'm one of two people who have thought up the online campaign #TakeTheMaskOff, the other being my friend Hannah Molesworth, who runs the Facebook page and Instagram Hashtag #Do I Look Autistic Yet; and, because week one of #TakeTheMaskOff is literally talking about what Masking is, it's kind of my job to come up with an umbrella description of what Autistic Masking is, to identify those input and outputs and to help the wider world understand why we do it and what it can do to us.

If you're following the campaign, either as it is happening or coming at this retrospectively, searching through hashtags which i hope will last for a very long time. I'd bet a lot of money on the fact that one word you are going to see mentioned time and time again is: safety.

Safety is paramount for Autistic people and Masking makes up a huge part of keeping safe and that's where our 'umbrella' definition comes in, because Masking is what we do to keep us safe, Autistic Masking is the act of an Autistic person presenting themselves as a non-Autistic person.

I'm hoping that this and what will follow will help answer a question I saw on Facebook the other day - what is the difference between Autistic Masking and simply adapting to change.

The short answer is: A lot

Here's the longer answer:

You can start any conversation about Masking by using four little words:

I am not OK.

Whether used as a description of what we are feeling when we Mask, down to an actual never used  response to the question "How are you feeling?"

Generally, Autistic people are not OK.  This is why we Mask.

For me, personally, the most obvious form of Masking is Scripting.  For every conceivable situation i have a script.  Many of them i keep in my head, I store them on the rolodex of memories I talk about in 'The inside of Autism'

Others though have to be created prior to events or engagements, some of them (the horror!), have to be made on the fly.

I'm going to give you a really random sentence now, trust me, this will make sense later, read it three times to yourself and then carry on reading properly: "Bananas are blue, the sky is cheese and cats are mouldy like apples in the stars"

On a walk to the local store I have my 'Talk to the shopkeeper' script, I have my 'Talk to my Dad's old next door neighbour' script (I have to walk past his house), I have my nod and say 'Hiya' to people script, for those who obviously recognise me but whom I have no clue who they are. 

It's by examining this that we start realising the difference between what Autistic people do, to what non-Autistic people do; because I rehearse these scripts, I rehearse them before I go to the store, while I'm on my way to the store, while I'm in the store, on my way back from the store.

Can you imagine how tiring that is?

Perhaps you can also see the potential problems with doing this...

Have you ever spoken to a telesales person on the telephone and asked them a question or said something which deviates from their script - it often sends them into a complete tailspin.

Now can you imagine carrying all the scripts inside your head for the scenario I just described, going to the store and keeping them there?

OK, maybe that's feasible, but then imagine you are walking there in the evening, it's getting dark, your night vision is terrible, so you're concentrating really hard on where you are going; car headlights are glaring by, causing you to shield your eyes because they are oversensitive to them.

You reach the store, avoiding the intimidating kids that stand outside smoking and drinking underage and walk inside.

The colours are leeching off the shelves, the music is blaring because the shop keeper is bored, the freezers and fridges are humming and throbbing, everything has been moved, something you like has caught your eye and you're not sure if you have enough change for it, then you have to debate with yourself whether to count your change to see if you can afford it, or just get out of the shop as quickly as possible.

You go for the fast exit and realise that as you have deliberated, ten elderly people have come in all wanting to do their lottery tickets, which is going to take ages and the basket which had only a few items in it, now feels like it has lead weights in it, the handles are digging in to your hand.

It hurts, so you put it on the floor and try to shuffle it along, only now it's in the way of people trying to get past, so you move it out of the way and now you're in the way, someone pushes past you and puts their hands on you and it takes every effort not to jump out of your skin, punch them and run screaming from the store. 

You hold everything in and keep shuffling forward in the queue, finally reaching the shopkeeper, who now wants to talk about the slowness of elderly people, which really wasn't in any of your scripts, so you kind of nod and laugh, but it comes out as a kind of squeak as you realise now you are completely incapable of speaking. The shopkeeper looks at you as if you have three heads, only you can no longer see him, because your vision has narrowed so much from anxiety.

You hand him some sweaty coins that have been clutched in your clenched hands for what now seems like an eternity, the room spinning, lights glaring and finally you can stagger out of the shop, shielding your eyes from the glare of car lights.

You stagger home, going the long way round to avoid bumping into your Dad's old neighbour, you clatter through the front door, head pounding, chest tight, straight into your wife who asks if you got the one thing you went for which you blatantly have not, so that sends you into another mental tailspin, which you stuff down inside you.

Remember that sentence i asked you to read. 

What was it again?

That ladies, gentleman and everyone else besides, is Masking.

Can you imagine doing that all day, every day.  Going to work, being at school, living your life?

I was at a Physiotherapy appointment today with my middle son, he's Hypermobile and is getting joint pains during the night.  The physio  recommended avoiding exercise that involves quick direction changes and it occurred to me what a good analogy that was for what we, as Autistics, often do to avoid standing out. 

The whole thing with not being great with change and the anxiety that kicks in when we have to.  Fast thinking in many situations is something we can't do, can't keep up with, sounds, instructions or conversations we can't process, so often fill in the blanks with... well... anything...

That word i mentioned before: Safety.

How does the Mask keep us safe?

Autistic children learn very early that many environments are not safe for them.  Not safe to be themselves.

Some of that stems from, i think anyway, a subconscious awareness that by sticking out they are leading themselves open to attack of some sort, some kind of primal self-protection, keeping them safe with the herd.  That actually ties in nicely with the sense of self-preservation many of us have when we're older, alongside heightened anxiety, we're literally on the lookout for threats constantly.

Alongside that is a conscious awareness that develops as we grow.  I'm seeing it in my eldest son at the moment, he's nine and I remember sensing it in myself. 

As self-awareness grows so does the realisation that you are not like the others, so the things you did previously, you don't do anymore.

That's natural for any child, sad, but natural.

But for the Autistic child, those things they did previously are necessary, things like Stimming.

If your main aim by Masking is fitting in, Stimming is not the way to do it, unless you can somehow redirect it so that you still Stim, but in a discrete way.  I do that, my Stims have gone from handflapping as a child and hopping, lots of hopping, to leg jigging extraordinaire and lots of pacing and rocking on my heels.  Some people have vocal Stims, such as Echolalia or make repetitive noises. Some people hand Stim, some bodily Stim, whatever the type of Stim, it's done for a reason.

Stimming is self-stimulatory behaviour.

Contrary to popular belief, we often Stim because it feels good.  It can also be a way of deflecting anxiety.  Suppressing Stims is a major part of Masking, Stims are a key way to be separated from the Herd, they are obviously "NOT NORMAL".  Suppressing Stims often leads us to become majorly anxious and is a good way to guarantee a Meltdown or Shutdown.

For Many Autistics, Stimming is a necessity, a natural part of being Autistic and, by suppressing Stims.
Masking is effectively holding your breath; the regulation you need to occur, does not occur and eventually you either have to breathe or pass out.

I don't want to dwell too heavily on Stimming, we're about to have a whole week of it soon, but needless to say it's a huge part of Masking.

The Mask helps keep us safe by pleasing others and meeting the needs of others.  We know that Stimming can make non-Autistics uncomfortable, in some cases it can be dangerous. 

There are many cultures and countries where being obviously Autistic can be perilous, cultures who do not understand Autism and fear it, countries where marginalised people could cause themselves harm by being openly Autistic.  Even in countries like the USA and the UK, where you would assume that people would be more forward thinking, Autistic people have been shot by the police, or fallen foul of not doing as they are told, due to sensory processing issues, or Meltdown.  OK, maybe you might expect that in America...

Not Masking is dangerous in other ways, even if you are not in immediate danger of being shot by a trigger happy policeman, as I've mentioned previously, being openly Autistic makes you stand out from the crowd.  Kids can be cruel, they pick up on the narrow-mindedness and fear of their parents, which is often borne out of ignorance and can and do use that to single out Autistic children and bully them, so again, that sense of self-preservation can come into play.

Despite Masking furiously and suppressing everything that came my way, I was still singled out and bullied, quite horrendously, all through my school years.  No matter how hard i tried to fit in, I still stuck out enough to be noticed and I think often i tried so hard to be 'Normal' that it veered the other way; that the child who made himself small and quiet was too quiet, too small.

Often it can be the case that over-compensating does make us stick out more - there have been many occasions where i have tried so hard to listen and be attentive to a conversation, that i really can't keep up with, that i fill in those gaps in the conversation and make more of a fool of myself, than i would have done if I'd kept quiet and out of it.

School is such an important place to mention at this point.

Teachers often state that they understand Masking.  In my experience this is simply not the case.

How does any non-Autistic person understand what it means to suppress your entire being for an 8 hour period five days a week?  What it means to hold in the pain of Auditory sensitivity, aversion to sights, smells, struggling through with executive functioning problems, anxiety, stopping yourself from Stimming, being forced to learn in a room, in a building that hurts you, being forced to learn in a way that is not conducive to how you learn, often taught by people who have no idea how to meet your needs and have not the time or ability to do so?

Sometimes, just sometimes, it's all an Autistic child can do to even turn up to school and, then, when they can't do it anymore, it's fashionable for the Parent to be blamed. Fabricated Illness seems to be popular at the moment...

Forcing a child back to the environment that crippled them without fundamental changes, also seems to be popular...

Tell me now you understand Masking...

You must all know the coke bottle analogy by now?

The child who is shaken up all day by their environment and then goes home and melts down?

That's YOUR responsibility.  Yes, Teach, I'm looking at you, just because it didn't happen on your turf doesn't mean you don't have a part to play.

I wrote an article on the Responsibility around Autism recently, you should probably go read it at this point, because it's partly about you and, while you're there, maybe you'd like to know what my education was like, because that was full of Masking too, anyone fancy An Autistic Education?



Of the many facets of Masking, one aspect that is often brought up is eye contact.

I've seen some ridiculous statements from people who call themselves Professionals in the last few months, as we've been building up to #TakeTheMaskOff, statements that peaked with one about eye contact.

A Speech and Language Practitioner declared that eye contact was an integral part of human communication and that it was the basis for an engaged life.

Challenge accepted!

Firstly, eye contact is predominantly a Western cultural thing, cultures all over the world actually actively avoid making it.

I pointed out that She and I were communicating through Twitter, without actually seeing each others faces, that people talk on the phone, walk side by side, sit in cars and talk, that blind people engage efficiently and effectively.

So few people understand that communication is a two-way street. 

It's always assumed that Autistic people are communication deficient, that we have a problem, yet nobody seems to point out that just because the predominant Neurotype communicates in a particular way, does not make their way the 'correct' way; nor does it mean that any other way is the 'wrong' way.  Nor is it necessarily a given that the Autistic person is the one with the problem, if the non-Autistic communicator struggles to understand or make themselves understood.

Eye contact though is a passion of Autism Professionals everywhere.  First question on the list - do they make good eye contact?

Well, if you'd ask that of me twenty years ago, you would have answered yes.

Except you'd be wrong, because i never made eye contact. 

It hurts.

It fucking hurts.

I used to look directly at the tear duct of the person's right eye.  I used to count how long to look for and then look away.  I Spent years perfecting that little trick.

If you asked that question of me today, you would answer no.

You'd still be wrong.

I don't make eye contact with anyone really, unless i want to.  I had counselling last year for 8 sessions and I wouldn't be able to tell you what the counsellor looked like.

However...

I've spent more time in the company of Autistic people in the last couple of years than i ever have and very rarely has there been an issue in looking at them.

I'm not the only one who has noted this either.

Basically you non-Autistic people need to stop thinking in binary...



From eye contact to sensory issues - Oh yes we Mask those too.

I have auditory sensory problems, yet you'd never know - i don't wear ear defenders, I wear hearing aids through having partial hearing loss, so handily for me all i need to do is turn them off.  The silence floods in for a second, followed closely by rip roaring tinnitus.  You'd never know that though by looking at me.

I have massive touch sensitivity.  Your touch burns my skin, you might as well lay a naked flame against me. 

Yet I'll shake your hand and not flinch. 

You would not know.

My partner in crime in #TakeTheMaskOff, Hannah, runs a page called Do I Look Autistic Yet?

She based that title on the constant statement that is made at every Autistic person at some point in their lives (At least 4000 times):

"Well, you don't look Autistic!"

The answer is no, I don't.

I don't look Autistic yet.

Why?

Because I Mask and you will never see the the constant pain I am in from hiding it from you and making you feel comfortable.

Honestly, how would you feel if you held out your hand for someone to shake and looked them in the eye and they declined to shake it and look at you.

What judgements and preconceptions would you make, based solely upon your cultural upbringing, which dictates what should be considered rude and what what should not.

Based on arbitrary societal rules that we are judged by every day of our lives.


One aspect of Masking which can be really subtle and is often completely over-looked is really interesting and it's one I made a promise to write about a while ago.

A couple of months ago I wrote an article about Autistic Burnout, something which is incredibly closely connected with Masking and often leads on from it.

Masking is exhausting, especially when you are doing it constantly with no respite, the emotional, mental and physical wear and tear is starting to be recognised in research, as directly connected to the Autistic Suicide rate and separately, the Autistic early death rate.

The article is called An Autistic Burnout and it was incredibly well received, the studies are cited in there and I'd recommend that anyone with an interest in Autistic Masking, whether personal or Academic, goes and reads it. 

It's been read by over one hundred thousand people and it seems to really hit a nerve with both the Autistic population and parents too. A lot of praise came my way for it and so I tweeted something sarcastic out:

"For my next Article I am going to write about how praise makes me want to crawl under a rock and not come out."

I genuinely feel that not being able to take praise well is part of the Mask - it draws attention to us, no matter how positive.

We are masters of deflection generally.

I've lost count of the number of times that I've witnessed Autistic children launch into Meltdown, shortly after being praised overtly and most of us have learnt how to shield ourselves from praise by early adulthood.

Us older Autistic adults are the same, we are usually self-depreciative.  I have no concept of how good my writing is, for example, so any praise i get for it confuses me and worries me.  Are they being honest, as I would be, are they trying to make me stand up and take praise so they can laugh at me? 

It's easier to Mask, nod and smile and turn away and think of something else.

Now that I've put that into writing and read it back, I realise how sad that is.

This is our lives though.  They are mostly sad.

Why are they sad? 

Well, we spend our whole lives pretending to be something else, to protect ourselves and make everyone else feel better about themselves. 

What a world that is to live in.

Whenever I write, I talk about society and how this world doesn't let us us sit comfortably in it.

Every aspect of society involves us hiding who we are.

There are some Autistic people who talk about needing the Mask because helping them fit in is a good thing, that they want to fit in and be like other people, they want to be 'normal'; I think (my opinion, not fact) for many of them, they are misunderstanding the role of Masking, misunderstanding Autism and misunderstanding the role Society has in painting Autism and therefore them, as negative.

Often these Autistics are among the Late Diagnosed.

These are people who have been Masking for 30, 40, 50, 60, sometimes 70 years, these are people for whom the removal of the Mask is a terrifying prospect and sometimes an impossible one. 

Some of them question why they have reached their diagnosis and have suddenly started become 'more Autistic'.  It is with great sadness that they have spent their entire life suppressing their true selves, to the point that they cannot recognise their true selves when they finally start to peek out.

On the other hand there are many people who are Late Diagnosed for whom the realisation that they have been Masking their entire lives is a revelation and they tentatively start to remove it layer by layer.

There is so much more i could talk about here, so many different aspects of Masking i could include, but I'm hoping between the other bodies of work that i produce and others do too, that Masking will have been looked at from every possible angle.

Society encourages Autistic people to hate ourselves, it keeps that perpetual search for cures and treatments going, it keeps the money rolling in, but it's all short-sightedness.

So much human innovation is born from the minds and hands of Autism, so how utterly ridiculous it is to cut that source of innovation off.

It is so important to recognise that those of us who can remove the Mask, either fully or partly, have much privilege, but it is also so important to recognise that Masking kills us. 

It wears us down, we burn out.

It wears us down and we burn out.

It wears us down and we burn out.

And die.

The thrust of this campaign is simply to create a platform for a conversation to take place. 

A conversation where more Autistic voices than ever before, cry out in unison collectively and make the wider world understand the horrors they force us to go through.

It is really not much to ask that an environment be made safe.

It is not much to request that Society works to protect Autistic people, as much as it protects non-Autistic people.

It is not much for us to dream of an existence where we do not have to hide who we are, out of fear of retribution and mockery.

It is not much to ask that we no longer should be made to shame who and what we are.

Lets work hard together to create a world where #TakeTheMaskOff need not exist.

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