Coping Strategies: What Can Help You Not To Mask?#TakeTheMaskOff

This week – how to be mask-less (ish) and survive with marbles intacto.

Firstly, no more f**ks shall be given.

By ‘f**ks’ I mean Not giving a f**k is living whilst BEING YOURSELF.

It’s time to be selfish and I know that for most of us autistics it’s a BIG ask because we’re so used to worrying about not upsetting those around us, right?

We’ve suppressed who we are, just so other people don’t feel uncomfortable around us?

Well, as my dear old mum used to say (frequently)

Sod THAT for a game of soldiers!

Or was it conkers?

Anyway, it’s time to take back what’s ours – which is our rightful place on this planet!

We need to be us.

Not a version of us.

Or someone we quite like off the telly.

Us.

And if people start giving us a hard time for being our glorious selves – we can walk away. We can also flick them the V’s, but why waste the energy? Haven’t we wasted enough precious time and energy on those toxic tw@ts?

Self Care

Self-care is essential for autists. You’ve got to know when to put yourself into recovery mode and not to try and override your brain when it’s telling you it’s about to malfunction!

If you are the overly sensitive kind of autist, you’ll need to steer clear of bad news or toxic people. It (and they) will have a detrimental effect on your mental health.

It’s also important to be mindful of how much time you spend on electronic gadgets and social media. The autistic brain often struggles to cope with copious amounts of information in one hit. This is why we get headaches and anxiety. Set yourself time limits and stick to them and don’t take your electronics to bed with you!

Electronics = Stimulating= Insomnia= Godzilla

To Socialise or Not to Socialise?

This is very much down to the individual. Some autists love to socialise. Others, like me, don’t. But sometimes socialising is necessary because people get married and die and stuff.

So what to do?

I have devised a plan.

Firstly, it’s OK to decline invitations. That event will go ahead without you and nobody will really give a toss whether you’re there or not once they’ve necked a few ciders!

Secondly, reserve the right to cancel at the last moment. Tell your host in advance that you may have to cancel. It’s up to you whether or not you disclose the reason why, but I am always honest about my anxiety and fibromyalgia.

With a bit of luck, this will put them off ever asking me again! Muhaha

Thirdly, don’t feel obliged to make small talk with people. Do what makes you comfortable and if that’s sitting in the corner with a massive slice of Victoria sponge and a pint of gin – sobeit.

Fourthly, you have the right to throat punch anybody who tries to drag you onto the dance floor to do the ‘macarena’ or any other dance that involves synchronisation on a mass scale. The reason is that autistic people are generally uncoordinated, innit. Then again, one can flourish the no f**ks given card and unleash your magnificent stimmy-moves along to Dancing Queen.

Dance or punch. The choice is yours.

Finally, leave when you need to leave – even if it’s after ten seconds.

When it comes to employment, you don’t have to go to works ‘dos’. It’s NOT compulsory. People invariably get drunk, make prats of themselves and spend the next six months avoiding every work colleague they propositioned whilst under the influence of thirty-six Pernod’s!

If the words ‘work’s do’ make you feel so anxious that you do a bit of sick in your throat, it’s probably best that you stay at home and watch Casualty in your Pokemon onesie instead!

Remind yourself that this is your world too. It might not feel like it, but it is. And we only get one shot at life (shameless cliche) so why waste time wearing masks that will only suffocate us in the end?

For what it’s worth, I do believe that masking has it’s place, but only as an occasional ‘aid’ that benefits the individual. Like everything else – when something is used to excess, all benefits are lost. In the case of masking – people develop mental illnesses because of the effort it takes to be someone else and subsequently the loss of their own identity.

All I ask is that people understand the consequences of long-term masking.

We need to understand our limits and for those rare occasions when we have to push ourselves into uncomfortable territory (such as weddings or funerals) we MUST practice self-care – before, during and after the event. The exception to this is our own funeral because if there is ever a time when no f**ks are given – it’s when it’s us who’s lying in the coffin. You get me?

Being yourself is hard after a life of masking. I know. But we were never meant to be ‘one of the herd’. (another shameless cliche)

In trying to be the same as everyone else we just end up standing out even more, but not necessarily in the way we’d want to.

Who do ewe think ewe are? (sorry)

I recently drove through Dartmoor where there were wild horses grazing among thousands of sheep. It was a breathtakingly beautiful place. It’s also a bit arse-clench-y when sheep wander in front of the car like they are some kind of death wish. Point is, the sheep vastly outnumber the horses, but they co-exist with them. The horses are not trying to be like the sheep. The horses are comfortable being horses and the sheep accept them and get on with the important task of grazing or having a poo.

That’s the kind world I’d like to live in.

Not the grazing and pooing bit. Obvs.

Then again..

I mean all autistic people living as autistic people.

Will that happen in my time? Probably not, but I really hope it will happen in my son’s lifetime.

The only way that can possibly happen is to #TakeTheMaskOff.

 

 

 

 

Diagnosis/Self Awareness – How Does That Affect Masking?#TakeTheMaskOff

 

Until the age of five, I didn’t mask. There was no need to. I was free to exist in my little world without fear of ridicule. I was happy with who I was. Then one day my mother took me to a strange place. This place was loud and scary and had lots of other children in it. It was a sensory nightmare.

My mother stayed with me for a while, then she got up to leave. I remember trying to leave with her, but she told me that I had to stay there. So I did what many children do on their first day of school – I cried.

The teacher sat me on her knee, but it didn’t comfort me because I didn’t like the closeness of her. She was a stranger invading my personal space, but I couldn’t move. I couldn’t speak. I couldn’t do anything to change the situation. A bell rang (loudly) and we were told to go outside where it was hot and the noise was deafening. It hurt my ears. I mean really. I didn’t know what I was supposed to do, so I just stood in the middle of the playground trying (and failing) to process the sensory stimulus that was threatening to overwhelm me.

That was the first time I remember experiencing loss of control.

At that moment, a girl walked up to me. I thought she was going to talk to me. Maybe offer me some friendliness? But she didn’t say a word. Instead, she looked at me as if I was something particularly nasty. Like shit? Then she pinched me hard on the arm.

Whatever I was expecting it wasn’t that.

To the onlooker, it must have looked like I didn’t react at all, but inside of me all hell was breaking loose.

I stared at my shoes while my brain went into overdrive.

I remember wanting to run off home to be with the family who loved me unconditionally and the invisible friends who understood me.

I also remember that nobody came to help me.

Nobody.

How could nobody have seen this?

And why had my mother left me in this horrible place?

At the end of that first day of school, I went to collect my coat, but there was something else on my peg – a mask. I placed it over my face and I wasn’t me anymore.

I wore it for the next forty-one years.

In my forties I became ill. The mask had been slowly suffocating me and now I was struggling to breathe – to live.

During this time I saw a doctor who saw beyond my anxiety. He sent me to see a psychiatrist who sent me for an autism assessment.

Nine months later, I was formally diagnosed as autistic.

First there was relief. Then came the grief – not for being autistic, but for all the time I’d lost trying to be something I’m not and can never be. I grieved for the fearful child that I’d been, the troubled teenager I became and the adult who masked so much that she lost her own identity!

In the beginning, masking is helpful because it provides a way to fit in with everybody else, but over time the mask gets heavier because you lose energy and strength. The mask starts to suffocate you. But you’ve worn it for so long you don’t know how to take it off. Then, life has a way of forcing change upon you and it often comes in the form of mental illness.

Mental illness shrinks you. Literally, in my case. My clothes became loose. My skin lost it’s elasticity. My mask came loose. In the end, it came away with no effort at all, but it was because I was ill. I thought I would feel vulnerable without it, but mental illness takes you to the darkest place you could imagine. A place you NEVER want to be again. I would rather take on the world in it’s full judgemental glory than go back there!

I masked because the world didn’t want the real me and I needed to try and be like everyone else to survive. Being me wasn’t an option – certainly not when I was school in the 70s and early 80’s. It also meant that I flew under the autism radar.

Masking delays diagnosis. Boys are diagnosed a lot earlier because they are generally crap at masking. The example I can give is of my son and myself. My son doesn’t mask and he was diagnosed at 4 years old. I have masked for the majority of my life and I was diagnosed at 46 years old.

Since my breakdown and subsequent diagnosis, I no longer care what people think of me. I get to be me, now.

Epilogue

I walk out into the middle of the infant school playground towards the smaller version of me.

She looks lost, awkward and out-of-place.

She’s hurting, but nobody knows it.

I gently take her hand and whisper, ‘Don’t worry. I’ve got you now’.

We walk past the girl who is responsible for the bright red mark on my younger self’s arm.

We could use the law of retaliation and give the little bitch an eye for an eye, but this is about healing, not revenge.

So we place the girl’s image into an imaginary balloon and let it float up into the sky.

Then we walk off into the cloakroom where a solitary coat is hanging on its peg.

I remove the coat and replace it with a well-worn mask.

We don’t need it anymore.

We’re free.

#TakeTheMaskOff: What is Burnout? How is it Connected to Masking?

We all mask.

Masking is not just an autistic thing. It’s a human thing.

We hide the parts of us that we don’t like or don’t want people to see for fear of rejection or ridicule.

When I mask I play a role and that means not being myself.

Onlookers can’t see beyond our mask. They see something that isn’t real.

Take Robin Williams: Twinkling eyes and a great smile. He was a hilariously funny man. And he killed himself.

The man was in hell, but nobody saw it.

We saw what Robin wanted us to see – his mask.

Masking is taking yourself, your fears and your demons and suppressing them so that you can present the world with a version of you that it will accept. You do it to fit in. You do it to survive. This takes a great deal of mental energy and it comes as no surprise to me that most autistic people develop mental illnesses. With me, it’s primarily anxiety.

Anxiety has shadowed me all my life. I’ve mostly functioned with it, but there have been episodes of depression and anxiety which have been severe enough to require medication and time off work. Somehow, I made it to 41. Then my mother died unexpectedly. The problem was that I’d been trying to run my entire house on a car battery (theoretically speaking) for so long that there was quite simply no energy to deal with such a shock and when it comes to trauma – losing a parent (especially a mother) is at number 5 on the Holmes and Rahe stress scale scoring 65/100% – 100% being the death of a spouse.

That was the start of my ill-health and five years later I burned out completely.

Mental breakdown. Nervous breakdown. Burnout.

Call it what you want, it all amounts to the same thing. Not limit reached, but limit breached.

It’s the tidal wave. Or it’s a hurricane.

It’s catastrophic.

I’m convinced that a life of masking led me to burnout at the age of 46 and during that time I didn’t have the energy to function, let alone mask.

How best to describe my mental breakdown?

  • My own personal hell.
  • I lived by the minute, not the day and every one of those agonising minutes felt like an hour.
  • I couldn’t hold onto my thoughts.
  • I couldn’t complete the simplest of tasks.
  • I couldn’t sleep.
  • I was in constant pain.
  • I was having numerous panic attacks a day.
  • I couldn’t eat.
  • I lost weight and muscle mass.
  • I couldn’t watch TV, read a book or listen to music.
  • I was constantly retching and feeling sick.
  • I wanted to be put into a mental institution – just so they could make all of it stop.
  • I thought I was dying, going crazy or both.

In-between bouts of anxiety, there were lulls where depression would take over and I’d cry. The kind of crying where the tears just happen without any effort at all. I actually prayed for the anxiety to come back. I could fight the anxiety, you see, but depression doesn’t fight fair. It consumes you. It numbs you. It steals every ounce of joy you ever had until you feel that nothing is worth living for, even when there is.

With every second of every day – I lost another piece of myself.

There was no dignity in my fight. It was ugly and it was messy and I thought I would never find my way back.

Make no mistake – mental illness is a battle.

You have to remember that the chemicals in the brain are imbalanced. It’s an illness.

Nobody chooses to be mentally ill.

Masking brought me to the brink of my sanity. That’s how it affected my mental health.

Since that time, there is a fragility about me that wasn’t there before. I developed a chronic condition (Fibromyalgia) which affects my entire body. Now, as well as being in mental pain, I am always in physical pain. This is what masking can do!

I wouldn’t be in this state if I’d been able to be myself – if society had accepted me as I am. But it didn’t accept me. It bullied and ostracised me and exploited my vulnerability which forced me to constantly wear the mask that’s damaged me beyond repair.

It’s a lesson I’ve learned – albeit too late to save my health.

“The most important kind of freedom is to be what you really are. You trade in your reality for a role. You trade in your sense for an act. You give up your ability to feel, and in exchange, put on a mask. There can’t be any large-scale revolution until there’s a personal revolution, on an individual level. It’s got to happen inside first.” ~ Jim Morrison

Be part of the revolution.

#TakeOffTheMask

 

 

 

#TakeOffTheMask: How Does Masking Affect Mental Health?

According to the Australian Actors’ Wellbeing Study taken in 2015, performers are twice as likely than the general public to experience depression. Many report performance anxiety and high levels of stress due to work-related pressures.

What’s this got to do with masking?

Autistic people who mask are performers.

We play a role so that society will accept us and we can fit in.

The actor: Will I be convincing as Othello?

The autist: Will I convince people I’m the same as they are?

Either way, it’s a performance.

The problem with performing is that we’re not being ourselves. Whether it’s strutting about on stage playing Hamlet or standing on the school yard with the other parents – performing takes a great deal of mental effort.

Tonight Matthew, I’m going to be…

Some of us mask so much that we lose ourselves. The boundaries between what’s real and what isn’t become blurred. Then one day we look at ourselves in the mirror and are shocked to find that we no longer recognise what’s being reflected back at us. The person that we used to know is buried under the mound of characters that we’ve created over our lifetime.

When I mask, I rely on what I’ve learned.

I have to recall lines or appropriate responses.

I have to judge when to speak and when to stay silent and for how long.

I have to remind myself to look at the person from time to time.

I have to try to work out facial expressions, which is hard when you’re crap at non-verbal communication.

I have prompt myself constantly.

I have to try and deal with the emotional fallout when I get it wrong.

I have to do all of this while trying to cope with my sensory issues, like background noise or smells or lights.

It’s mentally exhausting.

Imagine having to do this EVERY time you socialize, even with a neighbour or someone in the street – every single day.

Imagine having to perform every time you walk out of your front door? Or, even in your own home?

They say that the world is a stage and from the perspective of a lot of autists – it’s true – except that YOU are the actor, the director, the producer, make-up artist, wardrobe stylist and, well, you get my drift?

I have always been scared of the world and most of the people in it – so I’ve worn a mask and tried to fit in. To protect myself. To survive. Except that a lifetime of pretending has left me mentally (and physically) exhausted. All these years I have performed in order to fit in, but the truth is that I no longer want to.

I no longer want the anxiety that goes with trying to fit in.

I no longer want to feel the fear of rejection.

All these years I’ve pretended to be someone I’m not and in doing that I have failed to honour the unique (and worthy) person that I am – that all autists are.

Reggie removed his mask to discover that he’d been awesome all along!

 

 

 

 

 

 

 

 

#Take The Mask Off: What It’s Like To Wear The Mask

I’m an actress – acting is what I do. It’s what I’ve always done, but it’s not a profession or even a hobby. It’s survival.

I can pin-point the day that I realised that I was different. It was my first day at school. I was five years old. Up to then, I’d lived in my own world with occasional visits to this one.

I remember that I didn’t like this world very much.

I remember strangers talking to me.

I remember strange voices saying, ‘Aren’t you speaking to me?’

I remember voices asking if I was shy.

I didn’t want to talk to them.

I didn’t want them to talk to me.

It wasn’t shyness. It was selective muteness. That’s what happens when the world gets too much. I shut down. I stop talking. I become mute. It’s my safety valve. Without this ability to shut off, I’d totally (and regularly) lose my shit.

I started school in 1975 and the other children treated me differently from the onset. My first day was shit and it set the tone for the next ten years. Teachers told me off or ignored me. Either way, they didn’t understand me. I was bullied, as so many autistic kids are. Only I didn’t know that I was autistic. I just knew that I wasn’t like everybody else. Eventually I understood that I had to interact with people in order to fit in. I had to be more like them and less like me.

That’s when I learned how to perform.

So my life has been one big performance.

I’ve taken inspiration from many people. Some female, some male. All researched via TV, books or people I’ve come into contact with. I copied their voices, their mannerisms, their style (where sensory issues allowed) – so much so, that I lost my own identity.

I forgot who I was.

Was I an alien? Was that why I found it so hard to fit in?

Had I actually been birthed by a human being?

Or had I somehow landed on the wrong planet?

Performing. Chamoflaging. Masking. Whatever you call it, it means the same thing – NOT BEING YOU!

As the years have gone by, I’ve tried my hardest to be like everybody else, except that masking came at a huge personal cost.

One example of how I mask is with eye-contact.

I struggle with eye-contact, though on a good day, you probably wouldn’t guess.

I don’t like looking into most people’s eyes and I don’t like most people looking into mine. It’s an incredibly sensory experience for me – one which overwhelms and makes me feel vulnerable. Like they can read my crazy thoughts? Or I’m standing in my bra and pants. Either way, it’s not good. Then, in my mid-twenties I taught myself to look just above someone’s eye. I’d read it in a book somewhere. It helped, but the effort comes in remembering where to look and when it’s appropriate to look away. It’s in trying to take in what someone is saying while your concentration is elsewhere. There is this inner monologue going on reminding me what to do and when. It’s not natural, therefore it’s not effortless and the more anxious I am, the worse my eye-contact gets. When I’m really anxious, my eye-tic kicks in so people think I’m winking at them. *sigh*

I’ve fought against the mental and physical exhaustion that comes with trying to be something I’m not. Diagnosis helped me to understand who I am and why I experience the world differently and it took some of the pressure off. However, the diagnosis coincided with a nervous breakdown and though I wouldn’t wish one on anybody, it couldn’t have been more timely because I was unable to mask during my assessment. What they got was the real me because I had no energy to pretend otherwise.

Burnout is something that many autistic people encounter at some point in their lives. I did well to get to 46 before I broke down, but when I did break, the fallout was catastrophic. I didn’t know what the hell had hit me. I thought I was shuffling off my mortal coil. Or going mad. Or both. What I didn’t know was that my years of pushing myself beyond my limits had set me up for a chronic condition called Fibromyalgia. Look it up, it’s shit! At the same time, my life-long anxiety turned feral and my entire body started malfunctioning.

I was really unwell.

Masking had been draining the life out of me.

The only way back from that mental crap-hole was to be myself, not that I had any energy to mask anyway.

The only way back was to stop forcing myself to interact because it’s what society expected me to do.

The only way back was to be me.

I live with the knowledge that my health has suffered because of having to mask and it’s hard not to grieve for what’s been taken from me over the years. I didn’t choose to be autistic. I didn’t choose to be different. I didn’t ask people to be arse-holes to me. For most of my life, I considered myself to be the problem to be me, but I am not the problem.

I never was.

I can’t discard the mask completely. It’s impossible. There will be situations where I need to perform in order to get through them because not everything is in my control. Nor can it ever be. But I know that I can slip my mask on occasionally and draw from all those years of acting. The difference is that I give myself permission to leave when I’ve had enough and to accept that I will need recovery time afterwards and to lose the guilt-trip. Self-care is better late than never, yes?

My problems stem from trying to force myself to fit into a world that isn’t mine. Or that’s how it feels. Shove your size 4 foot into a size 2 shoe and it’s going to hurt, right? Try and walk in those shoes, every single day, and you’ll cripple yourself. You get me? The consequence is the damage to my physical and mental health. I’m basically f**ked and I can’t change any of it. I can’t rewind the clock. Not that it would help if I could because autism had a different meaning in those days. All I can do is be here as I was meant to be. As I am wired to be.

To help me to remember, I keep these words where I can see them everyday.

My darling girl, when are you going to realize that being normal is not necessarily a virtue? It rather denotes a lack of courage. Alice Hoffman ~Practical Magic