#TakeThe Mask Off: Diagnosis/Self-Awareness – How Does It Affect Masking?

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.

Mum was 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. The past is gone, but the future is mine. I get to be me.

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.

 

Autism: The Pretender

I’ve always known I am different, but for most of my life I haven’t known why.

I’ve had to suppress the real me and try to be like everyone else in order to try and fit in.

Masking. Mimicking. Copying. Pretending. Camouflaging. Whatever you call it – it all amounts to the same thing: Survival.

The cost of trying to fit in is high as many autistic people succumb to physical and mental exhaustion at some point in their lives. Like me. I burned out at 46 years of age.

The moment we leave the security of our homes we become somebody else in order to survive.

We are performers.

So much for autistic people not being able to act, eh?

As well as mimicking my peers, I took inspiration from characters in books and TV. Sometimes it was hard to know where the characters ended and I began. I remember asking my mirror reflection, ‘Who are you?’

Forty years later, I was diagnosed autistic.

Finally. I knew who I was.

Make-up has always been a tool in my ‘how to survive life’ box. Like clowns who hide their true identity behind over-sized clothes and painted on smiles, I tried to hide my ‘weirdness’ behind eye-liner and a layer of foundation thick enough to plaster walls. I’d seen how make-up changed my mother’s face so I experimented on my own and suddenly I didn’t look like me anymore, and if I didn’t look like me, then surely it would be easier to pass off being like all the other girls and, just maybe, they’d like me?

Er, no.

I wore eye-liner at first, but Dad went paternal on me and made me sponge it off. He didn’t understand my reasons for wearing it. How could he? He was a ‘man’s man’ and he just wanted me to stay a little girl as long as possible. It’s understandable, I guess.

Girls my age were wearing make-up – the difference with me was that make-up put a barrier between me and them – at the same time allowing me to blend in a little better. It was psychological because in reality I was still different. I just looked more feminine..

“My dad used to say makeup was a shallow girl’s sport, but it’s not. It’s armor.”~ Courtney Summers – All The Rage

For me, make-up wasn’t about beauty or fashion. It was about protection. Just as a riot cop would never go into an affray without their helmet on, I would never go out without my ‘mask’ on because I would feel vulnerable and exposed.

It was about pretence.

“Costumes and makeup play an important role in the drama, character creation.”

I have reinvented myself more times than Madonna, only with less success. And money.

Is it any wonder I burned out?

Since my diagnosis there have been changes. I feel different. Lighter. Less tolerant of people’s crap. I’ve found that the word, ‘no’ comes a lot easier these days.

I’m a long way from being make-up free as some habits are hard to break. Plus, I look bloody horrifying without it, but the mask is slowly falling and hopefully one day I will wear make-up simply because I want to – not because I need to.

So, what’s changed?

I accept myself for who I am. Also, I’m knackered from decades of trying to hide who I am in order to fit in and for what?

I GOT BULLIED ANYWAY.

Bullied. Ostracized . Whatever. It’s basically human beings exploiting vulnerability instead of offering protection and support.

I’d hazard a guess that most autistic people have encountered bullies at some point in their lives?

Bullies are cowards. Bullies are not stupid enough to abuse people bigger or stronger than themselves. They dominate those who are different in order to boost their own self-esteem and there lies the problem: Bullies actually have low self-esteem.

While I am new to knowing I’m autistic – I have always been autistic and I’ve been feeling resentful towards the people who have let me down over my life. However, resentment will only harm me, not them. That said, I feel more in control of my life than I have ever been. This is why the mask is starting to fall because I no longer need to hide. For what’s left of my life, I will embrace being autistic because it’s who I am. Some people say their autism will never define them but I don’t feel that way. If I wasn’t autistic, I wouldn’t be me.

Being autistic explains everything. Every moment of my life. People think I struggle because I’m autistic, but that’s not true. I struggle with an overwhelming (and confusing) world and I struggle with people.

People are a major problem.

I’ve floundered about from one self-help book to another trying to ‘find’ myself and only when I had my third child did I finally get my answer because he was diagnosed autistic. I have so much to thank him for because without him I would still be struggling with my identity. I’m not sorry that I’ve passed my autistic genes onto him because he’s the happiest little boy I know. He does NOT suffer. He’s NOT a burden. He requires NO CURE. However, I’m am sorry that the world still has a long way to go when it comes to understanding him.

Not so long ago, the school asked him to name things he liked about himself and do you know what my beautiful autistic son said?

“I LIKE BEING ME.”

Will I ever be able to say that about myself?

Lets just say that I’m working on it. Yesterday, I left off the eye-liner AND eye-shadow and I went out into the world. Maybe to most women, that isn’t a big deal, but to me it’s HUMONGOUS because it means that the mask is slowly coming off.

I’m also growing my hair-dye out. This is a challenging process as I need things to be visually ‘right’ and the mad badger look isn’t exactly flattering. However, I choose to think of it as a transformation from my old (and confused self) to who I am now and with each inch of silver hair, I can see the real me emerging. Like a butterfly, no?

Sounds wanky, but it stops me from reaching for the box of hair dye that’s in the cupboard..

For most of my life, I have been a pretender – always trying to be someone else because I thought that I wasn’t good enough.

I AM good enough.

I always have been.

Wanting to be someone else is a waste of who you are ~ Kurt Cobain

Image Via Pixabay

 

 

 

 

 

 

 

 

 

 

 

Things People Say That Drive Autistic People NUTS!

You don’t look autistic.

Is autism supposed to have a look?

When a person says, ‘You don’t look autistic’, it’s fairly obvious they don’t have a blithering clue what autism is. Maybe they watched Rain Man and believe that every autistic person looks like Dustin Hoffman?

Or, that you should be wearing a skull guard helmet..

In all fairness, people probably think they are paying you a compliment (ish) but what they are actually doing is belittling the difficulties that you face on a daily basis. Also, in that person’s eyes it puts you above other autistic people (such as those who do wear protective head gear) because you can pass for ‘normal’ and they can’t.

Here’s the thing..

I don’t consider myself to be better (or less) than any other autistic person.

I don’t consider myself better (or less) than any neurotypical person.

We are all human beings.

You’re obviously high-functioning.

If by high functioning you mean I can speak, dress myself, take myself to the toilet and do housework? Yes, I can do those things.. However, to me, the term ‘highly functioning’ implies that I can do things WAY better than the average person.

A super functioner?

Where’s my cape and tights?!

Super strength? FUNCTIONING.

The reality is that a good day requires a LOT of effort and some days I struggle to function at all. When I am overwhelmed, I stop functioning aside the very basics needed to keep my family and myself alive. I shut down. I can’t speak. I can’t read beyond a single sentence. I can’t complete simple tasks like washing the dishes or folding laundry. My brain buffers, then freezes and it can take days for it to unravel itself. I have to spend hours on my own in order for this to happen.

Last night, I was in bed for 7pm.

I’m 47!

Would you say this is functioning highly?

What’s 97865 multiplied by 98?

Why do some people assume that autistic people are math geniuses?  I can’t stand the motherfudging subject!

My dislike (bordering on the pathological) of mathematics started in 1975 with the words ‘add and take away’.

I’ve been hyperventilating ever since..

I can give you the answer, but I’ll need a calculator.

In contrast, The Boy could recite his entire 12 times table at the age of 4. He likes maths – the weirdo.

What medication do you take for it?

I don’t take medication for my autism because it’s NOT A FARKING ILLNESS!!

I do, however, take medication for migraines, arthritis and the general aches and pains which comes from being an old fart.

Autism is an excuse for bad behaviour.

Autistic people don’t choose to have meltdowns.

They don’t wake up and think, ‘You know what? I REALLY fancy losing my shit today. Toast, anyone?’

It’s not a nice feeling to lose control, whether it manifests outwardly or internally. It is a reaction to overwhelming situations and having to use up so much energy trying to survive in an overwhelming world.

It’s EXTREME ANXIETY, not bad behaviour.

My sister’s friend’s brother is autistic. You’re nothing like him.

Firstly, I don’t have the necessary parts to be like your sister’s friend’s brother.

Secondly, no two autistic people are the same – just as no two NT people are the same.

Autistic people have similarities but all have different abilities and strengths. That said, we do share one thing in common, which is that each and every one of us is FABULOUSLY AWESOME!

You’re married, can hold down a job, have children. How can you do these things if you’re autistic?

With a great deal of effort, cocker.

I drive as well! Fancy that? An autistic person being let loose on the roads. QUELLE HORREUR!

P.S 25 + years of driving. No points. No parking tickets.

I also manage to drive AND lick the windscreen at the same time.

You’ve just been sarcastic. YOU CAN’T BE AUTISTIC!!!!!

I do irony too.

You’re a person with autism. You should use first language.

I am autistic. I am an autistic person. My autism defines me otherwise I wouldn’t be me.

Here, I can only speak for myself as some autistic people wouldn’t thank you for calling them autistic. They would be up in your face faster than you can fart. Having said that, the majority of autistic people use the term ‘autistic person’.

Incidentally, I saw a Facebook thread where the parent of an autistic teenager was having a mini-rant about people using the word ‘Aspie’ because it’s insulting, apparently.

The fact is that most people with Aspergers, refer to themselves as an Aspie.

I refer to myself as an Aspie but primarily I am an autistic person.

 

You can look me in the eye. You can’t be autistic!

Technically, I’m looking above your pupil but it’s such a subtle thing, you’re unlikely to be aware of it. As a child, I spent hours standing in the corner at school for being ‘rude’ and not looking at the teacher. I wasn’t EVER being rude. It distressed me to look people in the eye, so, technically, I was abused by every teacher who ever punished me for not doing it.

It’s taken decades for me to be able to maintain eye contact with people other than my immediate family and even now, when I am anxious, I will spend more time looking at your feet than your face. I have to remind myself to look up occasionally.

Yes, I can look you in the eye – sort of – and I am autistic.

 

 

Yours Mentally

Three days ago I stood outside my local cafe and hesitated before I opened the door.

‘Just sodding well go in, you loon!’ I bollocked myself.

I walked in and sat down at my usual table and within minutes the cafe owner was at my side, notepad in hand.

“Nice to see you! What can I get for you?”

‘Tea and toast please’

Five minutes later I was drinking my tea and was overcome with a sense of achievement.

I sent OH a text..

In the cafe. ON MY OWN! *smiley face*

I’ll forgive you for thinking ‘what on earth is the idiot on about now?’ but what if I was to tell you that it was the first time in over 12 months that I had been in ANY cafe on my own?

Being autistic, going into any public places requires effort due to my sensory and social issues but this post isn’t about my autism, not directly anyway.

The anxiety which has shadowed me from birth morphed into Panic Disorder in 2014, then General Anxiety Disorder and after three years of my body being constantly flooded with stress hormones, I had a nervous breakdown.

Definition: A nervous or mental breakdown is a term used to describe a period of intense mental distress. During this period, you’re unable to function in your everyday life.

At the peak of my illness,  I visited my GP ten times, A&E twice and the out of hours GP service twice – this was in a period of two weeks. EACH time I was convinced I would be admitted to hospital. EACH time, I was told it was anxiety.

When it came to symptoms, I had the works with my entire body from my scalp to my toes being affected. I felt sick ALL of the time and kept spontaneously retching. On one occasion I sat in the GP’s office retching violently into a cardboard bowl. She said I had a gastric bug but I’d been retching for the past three years (just not in public) so if it was a gastric bug then I was breaking some kind of record! Another time I was walking down the street and retched so hard I actually vomited over myself.

Barfing, not dancing, in the street.

My weight dropped into the 7 stone range and my muscles were starting to waste. I was starting to look like Skeletor, only less sexy..

My bowels woke me up at 4-5am with a ‘MOVE IT OR YOU’LL SHIT THE BED’ cramping in my lower regions. I’d also wake in the early hours shaking violently, not that it woke OH. Nothing short of the house blowing up would have roused him from his coma..

I couldn’t tolerate drugs, even painkillers. Come to think of it, even vitamins gave me gyp.

Palpitations? Don’t start me.

My mouth was sore but with no visible cause because I checked via a dental mirror NUMEROUS times. Yes, REALLY! You do things like this when you are mentally ill, see. You spend hours inspecting yourself and prodding your poo. Dignified, no?

I had test after test but all came back clear.

‘All those doctors can’t be wrong, Sweetie’, OH said.

‘They just haven’t found the cancer yet dearie.’ countered Fear.

By far, the most debilitating symptom was the feeling that I was losing my mind..

My grip on reality can be iffy at the best of times but this was in a different realm completely. I struggled to go out or be on my own. My stims became more noticeable and I had no control over them at all. My rocking went from my usual subtle movement to virtually falling off the chair-rocking and my lips were sore from frantically picking the skin off them.  I couldn’t see a way out and in my worst moment I actually wanted to be sectioned.

Yep, you read that right. I wanted to be thrown in the big house where they could put me to bye-byes and be there for me 24/7. I understand now just how poorly I was and If I hadn’t have turned myself around when I did, I may not have had any choice in the matter..

I threw everything at getting better. I did relaxation and yoga. I cut out sugar, caffeine, alcohol, gluten etc but none of it helped for long because I wasn’t accepting how I felt. I was fighting Fear ALL the way..

The breakthrough came when I was told I would have to have a colonoscopy. I was SO convinced I was coffing it that I accepted my fate AND all those weird and unwonderful sensations. I told myself to enjoy what time I had left because Fear could eff right off if it thought it could rob me of that too. With support from OH and a few good friends, including one who’s had a breakdown of his own, I began to see blue sky even in the shadow of my imagined death.

Beautiful Blue Sky

I stuffed food into my mouth and didn’t dwell on how crap it made me feel. I lived alongside Fear and accepted whatever it threw at me. What had I got to lose?

I started to put weight on and my tummy started to rumble again. I FELT HUNGRY!!

I told myself constantly that ‘whatever happens to me. I am here, NOW’.

Then my bum got invaded courtesy of the NHS, and everything was fine. I wasn’t dying (HURRAH) but I had to face the fact that I was mentally ill..

My weight is now back up to 8 and a half stone and my heart isn’t pounding all the time. The anxiety will always be there but I’m not in crisis anymore. I have taken steps to help myself, the biggest and most important being ACCEPTANCE.

There were many times when depression tangoed with the anxiety and I thought I would slip further into insanity but my mind is stronger than I could ever have imagined. It’s healing itself, especially now I understand that magic word, acceptance.

So, yeah, I went to the cafe alone. It was a GINORMOUS step and I’m PROUD of me. I know that recovery is a long process and there will be setbacks along the way but that’s ALL they will be because I’ve accepted fear for what it is.

We need fear. It stops us from being reckless but fear should work for us, not the other way around. That jumped up little git needs to know it’s place, innit.

If you are reading this and are struggling with mental illness, know that you CAN get better. It’s your thoughts that have put you where you are and it’s your thoughts that will set you free.

Yours, mentally

ACCEPT

 All Images Via Creative Commons