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.

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

 

 

 

 

 

 

 

 

 

 

 

Hate Crime and Autism

Hate crime against autistic people happens because of ignorance and prejudice. I have a theory that some people only have to hear the world ‘autism’ and they immediately think of American high school massacres where the shooters happened to be autistic.

Take Adam Lanza (Sandy Hook) for example.

Obviously, what Lanza did was unforgivable – not to mention inexcusable – but here’s the thing: being autistic did NOT made him a murderer.

Adam Lanza allegedly had a mental illness that had gone untreated. He was also suffering from malnutrition as a result of anorexia. Malnutrition causes brain damage. He’d also been bullied, rejected and isolated for the majority of his school life. One of the most important factors of all? His gun enthusiast mother taught him to shoot at an early age and he had access to guns. This is one hell of a toxic mix, no? There are numerous factors as to why he became a mass murderer but the one thing that some people focus on is the fact that he was autistic.

The fact is that after the story about Adam Lanza broke, young autistic people were bullied, especially online.

This is how ignorant people can be.

The truth is that an autistic person is more likely to commit suicide (or be murdered by a family member) than mass murder.

Why do autistic people commit suicide?

“These are individuals who have been struggling all their lives to fit in,” “Along the way, they have really been suffering.” ~ Simon Baron-Cohen – professor of developmental psychopathology at the University of Cambridge in the U.K

Why? Because society won’t allow them to be themselves. Autistic people are put under enormous pressure to adapt to society in order to fit in and to conform.

Getting back to mass murder – most school ‘shooters’ are Caucasian males. So, if every autistic boy is a potential mass murderer, then this must mean that every Caucasian boy who goes to school is also potential mass murderer, right? Of course not. So why would people think that a child is likely to go off on a murderous spree just because they’re autistic?

Because they are f**king idiots, that’s why.

A mass murderer may well be autistic but that doesn’t mean that it’s the cause of the crime anymore than being Caucasian, having blue eyes or wearing a Nirvana tee shirt is.

“Correlation does not imply causation.”

One problem the autistic community has is irresponsible journalists mentioning mass murder and autistic in the same sentence. The two are linked together and what we have are ignorant people who think that just because a child is autistic – they are potential murderers. So when a boy is known to be autistic, what chance does he have? He’s autistic, therefore he’s a danger to all the NT kids?

My son is eight years old and he’s autistic. He’s one of the loveliest and kindest people I have ever known. He likes to make people laugh. His friends matter to him. When those friends reject him, it hurts him deeply and he can’t express that hurt in words, so he lashes out or he harms himself.

He’s not an angel. He can be rude. He can be grumpy but what 8/9 year old child isn’t?

Earlier this year he came home from school and he’d been having meltdowns. He had another one at home only this time he was self-harming – banging his head against the wall. We eventually learned that one of his friends had told him that they were forbidden to play with him. Why? Because he’d given this child some of his money to buy a snack. The child’s parents interpreted this as my son trying to ‘buy their child’s friendship’.

What?!

He doesn’t understand the concept of bribery.

He was being kind!

NEWSFLASH – autistic people do have empathy.

My son broke his heart in front of me.

“I hate myself, Mummy”

I don’t blame the child in question but I do hold the parents accountable for my son’s epic meltdown that day. I don’t know about you, but I would be absolutely mortified if I knew that a child had self-harmed because of something I’d said or done.

The depressing fact is that the leading cause of premature death in autistic people is suicide. If society changes their attitude towards us, that statistic will change. As an autistic person, I understand it. As the mother of an autistic boy – it terrifies me.

Research suggests that autistic boys (especially those with aspergers) from the age of 10 years up are more vulnerable to suicidal thoughts and attempts to take their own lives. Sadly, some succeed, like 11 year old Shane who killed himself as a result of being bullied because he was autistic.

Those who bullied him didn’t directly kill him but they abused him to the point that he felt life wasn’t worth living. It’s hate crime. They are accountable as far as I am concerned. Yet they are free to grow up and get on with their lives. Sound fair to you?

“Shane was a fighter. He made everyone he met happy. He put a smile on their faces. He was extremely intelligent in science, history and any type of animals and their habitats. He had a huge, loving heart (Tammy Laycock – Shane’s mother)

Going back to journalists..

Bethalto boy struggled with autism before killing himself.

Lets be clear here. This boy did not ‘struggle with autism’ before he killed himself. He struggled with how he was treated by staff and children at his school. Had they have treated him with the kindness and respect he deserved, do you honestly think he would have chosen to kill himself?

Autism didn’t kill this beautiful little boy. Prejudice, ignorance and intolerance killed him.

My son won’t become a statistic if I have anything to do with it. For me, the fight starts here. At 8 years of age he is unhappy because of the actions of a few people. The latest being an incident when we were verbally abused in the street. The tirade was aimed at me but it was about my son and he happened to be stood next to me listening to every word..

“Why don’t you have some self respect and remove him from school”

This coming from someone who was EPICALLY losing their shit in the street in front of their own child?

“Your son’s a bully”

Obviously I’m not supposed to get irony because I’m autistic (we do sarcasm too) but here is a person who is verbally abusing me and my son in the street and who is also making a concerted effort to get him kicked out of school because he’s ‘a bully’ despite there being no actual evidence for it.

He’s not a bully. He is a vulnerable child.

So tell me. Who’s the bully?

I reported the incident to the police and the person got a caution and I’d do it again in a heartbeat. If it had just been me, I’d have let it go, but nobody intimidates my son and gets away with it.

My son isn’t Adam Lanza. Nor is any other autistic boy. His world is challenging, yes, but that doesn’t make him a bad person. I wish that people would educate themselves about autism instead of reading sensationalised news stories written by irresponsible journalists.

I will fight for my son’s right to live in this world free of fear because it’s his world too.

Because when it comes to my offspring I will fight with the fangs of a wolf and the claws of a dragon. And no one, or nothing will stop me from protecting them.