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

We all mask.

Masking is a human thing, not just an autistic 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 unexpectedly died. The problem was that I’d been trying to run my 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.

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.

The mask was very much off.

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 my beloved music.
  • I was constantly retching.
  • 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. It was the kind of crying where the tears just happen without any effort at all. The depth of sadness was such that I willed the anxiety to kick back in.

Anxiety was the lesser evil because it made me feel alive. When the depression took over, everything slowed down. It was like my body and mind was giving up on me. Was I dying?

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!

 

 

 

 

 

 

 

 

#TakeOffTheMask: Stimming

I’m a stimmer. I stim to calm and to self-regulate. It is (and always has been) necessary for my mental health well-being.

One of my favourite-ist ways to calm myself as a child was to twirl myself around until the ‘butterflies dance’. Why? Because it blocked out all the shit stuff. While I was spinning, I couldn’t think of anything else except the fluttering sensations in my body.

Those few minutes allowed my brain to reset itself.

I didn’t know that I was autistic.

I didn’t know that I was stimming.

My ‘stimbox’ includes rocking, spinning and stroking tactile materials. It also includes me picking at my skin until I bleed. Then, come the scabaroonies which I will pick off time and time again. Scabs are the gift that keeps on giving, right?

If you happen to see me manically ripping the skin off my lips, I’m probably mega-anxious.

If you see me rocking gently, I could be happy, excited or apprehensive.

If I’m rocking like a psycho, it’s best to assume that I’m experiencing brain-snap, so I’d back away s-l-o-w-l-y.

When I stim, my brain overrides some of the stimulus that makes me anxious.

When I suppress my stims, stimulus (and anxiety) becomes amplified.

Lets get one thing clear: EVERYBODY STIMS. If you’ve ever chewed your nails, hair, pen-top, or shoved your finger up your nose and left it there longer than is necessary – you’ve stimmed. The difference is that non-autistic people’s stimming is more socially acceptable. Nobody gives a toss if someone bites their nails, right? Hand-flapping? Tosses are very much given and people turn into judgemental @rse-holes!

I used to be semi-successful at suppressing my stims. Just as I was semi-succesful at camouflaging myself, but since I burned out, I’m not so good at it because I don’t have the energy to suppress anymore. That and I can’t take medication for my anxiety disorder because I have Fibromyalgia – a condition which can affect how your body reacts to medication.

Stimming keeps me sane – literally.

I stimmed recently at my son’s school presentation day. It was necessary because the stimulus levels were THROUGH THE ROOF! It was a sensory nightmare – which is ironic considering the event was for an ASD specialist school.

I rocked gently, back and forth or from side to side. It calmed me enough for me to be able to remain in my seat. Plus, I fixed a mini-fan to my phone, which went down quite well with the lady who was sat next to me. However, the room was full of autistic students and their parents – some of which will have been autistic too, so I doubt that I stood out at all, but even if I did, I doubt that any shits would have been given.

When you mask, you suppress or adapt your stims. On top of having to think about what to say and when to say it, you have to suppress the urge to stim naturally. Maybe that will give you some indication of how social interaction can be so exhausting for autistic people?

With the controversial ABA approach, stims are literally shouted ‘out’ of autistic children.

‘But it works! Little Jimmy no longer flaps his hands!’

It works for you, but little Jimmy has turned into a robot. He’s been trained to obey.

You don’t ‘cure autism’ – you suppress an autistic person’s need to be themselves which could potentially result in mental health disorders.

“We’re not trying to deny kids the right to be who they are,” Dr John McEachin, co-director of the Autism Partnership, an ABA service provider,

Denying autistic kids the right to be who they are is EXACTLY what you are doing, mush!

Often, autistic people are unable to communicate verbally how they are feeling and parents/carers are too focused on trying to eradicate their stims to understand that stimming gives a clue as to how a person is feeling/coping in a situation. A change in stimming frequency (or intensity) might indicate that a person’s anxiety levels are rising and it would be wise to remove them from the situation. Understanding the role of stimming could help to prevent a full-blown meltdowns and improve an autistic person’s overall well-being.

What would people rather see. A child flapping his/her hands or a child running out into the path of a car because their anxiety has hit the danger zone?

Your homework for this week is to go out into the community and observe people stimming. Foot-tapping. Finger drumming. Doodling. Stroking hair. All self-stimulatory behaviour, but it’s only autistic people who get called out on stimming. The problem is that our stims are generally more visible and it makes people feel uncomfortable and we can’t have that, can we?

Some stims are simply not acceptable in public and in those cases it’s necessary to encourage more appropriate ones. For instance, some people firk with their crotch area when anxious. Nobody wants to see people firking around in their crotch areas unless it’s by mutual agreement, you get me?

Other stims are harmful, as with head-banging and other self-harming behaviours. To understand this behaviour, you need to know that when a person self-harms, it’s because their anxiety is overwhelming them to the point of requiring pain to block things out. I’ve never self-harmed in this way, but I’ve seen it many times and I understand that it’s a total loss of control due to severe anxiety. If it makes you, the onlooker, uncomfortable to see this. Can you even imagine what the person who is in pain feels like?

“Stimming is rarely dangerous. It can, however, be embarrassing for parents and siblings, disconcerting for teachers, or off-putting for potential friends and co-workers.” (somewhere on the internet, but I’ve closed the tab on the page and cba to trawl through my history)

I’d argue that stimming can be dangerous. Banging one’s head against a brick wall isn’t exactly soft-play, is it?

As for the second sentence in this quote..

This is the problem.

We make ourselves mentally ill so we don’t embarrass our families or make our teachers, peers and co-workers feel uncomfortable.

The worst it’s going to get for these people is to feel uncomfortable?

The worst it’s going to get for autistic people who suppress their stims is to be mentally ill.

Actually, worse case is premature death.

Instead of trying to force autistic people to conform to the detriment of their health, how about society adopts a more tolerant attitude to stimming?

OOH LOOK! A FLYING PIG!

 

#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