Disconnect to Reconnect

I have a problem. This digital age is making me ill and I need to cull my use of it for the sake of my health.

Don’t get me wrong, the internet and social media etc has its positives. It’s in social media (and blogging) that I have found my ‘tribe’ – fellow autists who understand me completely. And I’ve found some lovely online friends who I’d definitely make the effort to meet in real life. There is comfort in knowing that there are other people like me – regarding autism, anxiety and fibromyalgia. So, there are positives to the digital era. But there is also a dark side – a side which ramps up anxiety and deepens depression.

The internet is a place where fear and hate lives.

Cyber attacks.

Trolls.

The threat of ‘deletion’.

Addiction.

Fake News

Unwanted news and graphic pictures.

Katie Hopkins.

When it comes to social media, it seems to me that Twitter’s sweet little blue-bird icon should give way to a massive vulture with bits of flesh dangling from its beak because, DAMN! PEOPLE CAN BE SO NASTY!

Tweet this, Motherfungler!

With Twitter, people can be nasty and remain annoymous, whereas, back in the day, ‘trolling’ involved sitting at the kitchen table with a newspaper, a pair of scissors and some glue. There was a certain amount of effort involved, you get me? These days, people only have to switch on the PC (or other electronic device) to get their nasty on and, alarmingly, one of the worst social media offenders runs the United States!

But it’s not just social media that’s the problem. I’m starting to think that this digital era in general is making me ill – the screens and the amount of information in one hit. Not to mention, the addiction.

Take me back to the time of radio, books and record players the size of a small car.

Of simplicity.

I’m not against mobile phones per se. As a female driver, I feel safer with a phone to hand (not while I’m driving, obvs) The problem is that it’s no longer just a phone. It’s an intrusion.

Often, I don’t I don’t need to check my phone. It’s just habit. I mean, just how important is it that I have to see somebody’s fry-up? Or e-mails flogging me worming tablets with 10% off?

*Note to self: Order worming tabs*

Of the twenty or so e-mails I received this morning, two of them are from me!

I can’t do it anymore! I know the digital age is escalating my anxiety, so it’s in my best interests to disconnect as much as possible. Therefore, my plan is to have a month where I don’t use social media at all and to only read paper books. I may still blog because blogging is my voice. Also, I blog in the morning to scare up a bowel movement, innit. The adrenalin helps to get things moving, y’know? But that will be it. It will be an experiment to see if my anxiety levels improve.

I will remove any relevant apps on my phone because if they’re not there, I can’t be tempted, right?

I want my phone to help me, not control me and at the moment that slimline b@stard has me right under its thumb (ID)

To reconnect, I have to disconnect.

The thing is, I’m old enough to remember a time before the digital era, so I know how satisfying that feels. I feel sad that today’s generation won’t ever know that. What they will know is the anxiety and depression that comes with living their lives online, constantly comparing themselves to photo-manipulated versions of people who appear to live the perfect life.

It’s not real.

More importantly, there is the danger of developing problems with our spine. According to the British Chiropractic Association, our obsession with smartphones has led to a rise in the number of youngsters with back problems. This is due to the amount of time they spend leaning over their phones!

45 per cent of 16 to 24-year-olds suffer from back pain – a 60 per cent rise from last year.

You Get Me?

Kindles.

Kindles are great. Especially those 99p bargains! But where is the joy in an electronic purchase? Standing in a book shop, inhaling paper and ink? It’s magical! It’s like catnip to a cat! You don’t get that with a Kindle!

Part of what made growing up bearable to me was the fact that I got to buy a book every week and part of that joy was the visit to the bookstore. Granted, there is the occasional whiff of ‘eau de fart’, but book shops are exciting places and it doesn’t surprise me that people feel stirrings within their bowel regions whilst being surrounded by all that wonderful literature. Personally, I’m too posh to fart in public, but I’m no stranger to having to put a book down, mid-browse, in order to sprint to the nearest loo!

I am part of the digital age whether I like it or not, but I know I’m not the only person on the planet who craves simplicity. As with any addiction – will power is required and I’m sick (pardon the pun) of feeling ill and absorbing people’s hatred on social media, so, disconnection will commence on November the 1st.

I am, in effect, closing down all those ‘open tabs’ that are draining me of my energy, creativity and faith in humanity. Not to mention, positivity and you do need a little P to battle mental and physical illness, no?

We already have months of the year where people are encouraged to stop drinking and smoking. Doesn’t it speak volumes that the same thing is starting to happen with social media?

Almost everything will work again if you unplug it for a few minutes, including you. ~ Anne Lamott

 

 

 

 

 

 

Racing The Bumblebee

 

After 46 years of not knowing who I was, you’d probably imagine that when I finally got the answer I would be happy?

Maybe, for other autists this is the case?

The truth is that I’m not a happy person. I feel happy occasionally, but mostly all the nice stuff is weighed down by anxiety, pain, and sadness.

It hasn’t always been this way. I’ve known happiness. Real happiness.

Until the age of five, I was happy. The world was a magical place. I was in-tune to the oneness of the universe and while I’m aware that some might consider that a bit ‘wanky’, everything is connected. The problem is that we grow older and become disconnected.

Children are open to most things because they are new. They accept what they see and feel because they’ve yet to be brainwashed with jaded and narrow-minded opinions of their elders who tell them:

1. There’s no such thing as ghosts!

2. Santa doesn’t exist!

3. There is no heaven!

However, none of these statements are fact.

1. There are such things as ghosts if you’ve seen one and I have, twice, and if you understand that we are energy and energy can’t be destroyed ( it can only change form) then ghosts are completely viable, no?

2. Santa existed in human form. His name was St Nicholas and as Santa Claus he lives on in every parent/guardian who ever put a present under a Christmas tree in his name.

3. People who have been clinically dead who come back to life with stories of heaven or a place beyond normal consciousness.

‘If heaven existed, then everybody would experience the same thing!’

Says who?

It depends how you think of heaven. Maybe my heaven will be a massive library? Maybe yours will be that special beach you visited once? Or do you associate heaven with clouds and a bearded bloke wearing sandals? The point is that many people experience another state of consciousness during cardiac arrest (even brain death) which suggests that our consciousness does not die with our bodies.

Children are open to the unseen and the mysterious, this is partly what makes childhood so magical, but childhood is brief and there comes a day when it ends and my childhood’s end came when I was 11 years old. Bonfire night. Talk about ‘out with a bang’? The stomach cramps I’d been experiencing for weeks turned out to be the onset of my periods. I wasn’t ready, but is anybody ever adequately prepared for puberty? Not us and certainly not our parents who have to put up with their sweet little children turning into argumentative arseholes!

The big P coincided with a house move and a new school where I was bullied from word go. Here is where the sadness became a constant emotion. Magic struggles to thrive in such conditions and a few years later I discovered the numbing effects of alcohol and it all but vanished into the vaults of my mind. But there have been moments where the universe has reminded me that there is more to this life than what people think. I’ve always known it, but sometimes I forget it because mental illness clouds the mind. This is when the universe has to work harder to get me to notice but when I do, it lifts me enough to keep my head from going under.

Recently I was having one of those days.

I was on an old fashined steam train and I was alone in the carriage. The track was only about a mile long so we were going slow enough to be able to appreciate the countryside. Something told me to look to my left and when I did so, I noticed that a massive bumblebee was flying level with my window. It flew in a straight line with my window for about fifteen seconds, though it felt like hours. This tends to be the case when a connection is made. Time as we know it, changes. It slows down. The movies depict this by freezing everything around the subject (s).

A thought crossed my mind..

I was racing a bumblebee!

Not THAT Bumblebee!

There was this connection. The bee and I were one and, no, I hadn’t been at the cider!

It was magical.

It was funny and uplifting and amazing and all those wonderful feelings that had been covered up with the haze of mental illness.

We forget that everything is connected, but the universe has a habit of reminding us and often at the exact moment that we need the reminder the most.

“I do believe in an everyday sort of magic — the inexplicable connectedness we sometimes experience with places, people, works of art and the like; the eerie appropriateness of moments of synchronicity; the whispered voice, the hidden presence, when we think we’re alone.”
Charles de Lint

This was one of those moments.

This was the magic of my childhood. I noticed this kind of stuff all the time and I couldn’t understand why other people couldn’t see it too? But growing up does that to a person. Those spaces in our mind where the magic is recieved are gradually replaced by worries, sadness and useless information.

Enchantment gives way to stress.

Mental illness is an enchantment killer. Catastrophic thoughts are like weeds that strangle the life out of every beautiful thought you’ve ever had, You stop feeling the magic. Sometimes you stop feeling full stop. You become disconnected from the universe and eventually, yourself. It’s at this point that you struggle to know what the point of it all is. The years of suffering yet to come stretch out in front of you and you feel a sadness of such depth that you cannot begin to describe it. It scares you. You don’t want to feel this way, so you fight, but it’s like quicksand; the more you struggle, the quicker you go under. It’s only when we stop struggling that we get chance to breathe and in that moment we can see that the universe has sent us a life line. All this time, we thought we were alone, but we were not. We never are.

The only issue I’ve ever had with that is when I’m having private time on the loo. Do the unseen respectfully float off elsewhere? I hope so because there ain’t nobody, alive or dead, who needs to witness me having a tricky bowel movement, you get me?

To you, the bumblebee race might seem insignificant. Fanciful? I can see why you would. But this was something you had to experience.

Of course, you can choose to ignore such things or write them off as coincidences, but you will never know magic or enchantment if you continually slam the door on it.

Those who don’t believe in magic will never find it ~ Roald Dahl

Then there’s the sea.

A lot of humans have a connection to the sea. This could be because we’re mostly made up of water, but there is also this spiritual connection to water. Except for boys who develop an aversion to it until they discover start fancying girls (or boys).

Or it’s simply the desire to try and conquer the sea because it’s bigger and stronger us? Despite having nearly drowned, I love to look at the sea. It calms me. It always has. The way the waves crash when it’s stormy or gently roll when it’s calm. It’s moody, like me. The sea has the capacity to kill me, but it also has the capacity to calm my anxious thoughts in a way that no drug ever has or ever will.

“Look at that sea, girls–all silver and shadow and vision of things not seen. We couldn’t enjoy its loveliness any more if we had millions of dollars and ropes of diamonds.”
Lucy Maud Montgomery, Anne of Green Gables

Then again, I am the Cancer water sign so maybe that’s another reason why I’m connected to it? It would certainly explain why I walk sideways. Or is it to do with being deaf in one ear? You know, balance? Either way, my walking is very crab-like!

So, in one week I got to race a bumblebee and stare at the sea and it provided a lull in the chaos within my tired middle-aged brain.

More importantly, it gave me hope.

I know that enchantment exists. It’s never not been here. I just lost sight of it because anxiety and illness clouds the mind. It’s like when a radio loses it’s signal. The capability is still there, you just have to re-tune the station.

 

 

 

 

 

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.

Reasons I Hate Summer: Holidays

Holidays are all about unpredictability and unfamiliarity – two things that I don’t do well with because I’m autistic, innit. I’ve never got what all the fuss is about! There’s also the sensory issue of sand in EVERY crevice which turns bum (and flap) wiping into a hazardous experience, no?

Then there’s the flock of seagulls. Not the 80s pop group with questionable hair-dos. I mean beaky bastards that crap on your hair and steal your chips!

Give me your f **king chips!

Is it me, or are seagulls a lot more feisty than they used to be? Maybe they’ve watched too many Steven Seagull movies? Geddit?

Anyhoo, I remember childhood holidays – at least, I remember a few. I don’t think we went every year. That was probably because we couldn’t afford to or maybe I’ve blocked a few out? Of those that are etched into my memory, I remember the entire family cramming into musty-smelling caravans with daddy-long-legs the size of Brazil and being made to strip off on the beach as apparently it wasn’t socially acceptable to wear your coat? As any misfit will tell you – coats are not just an outer layer of clothing – they are armour and it matters not that it’s 30 degrees in the shade and every other kid is running around in swimsuits and shorts!

Then there was the stress of having to choose which Enid Blyton’s to pack into my little suitcase, because as Dad used to say, ‘It’s a car, not the bloody tardis!’

My misery was reflected in the photographs that flopped through the letterbox about a month later. Photographs of me scowling and me giving the thumbs down and me being a generally miserable tw@t. In contrast, there was Dad – smiling, laughing and working his arse off trying to cheer me up.

I’m sorry, Dad. You worked hard all year. You deserved a nice holiday. I wish I had made more of an effort. 😦

To be fair, my eldest brother ruined at least one holiday because he was a teenager and teenagers are by default – arseholes.

I NEVER WANTED TO COME ON THIS STUPID HOLIDAY! YOU’VE RUINED MY LIFE! I HATE YOU!

Once I became a parent myself, I understood the effort (and money) my parents had put into our holidays. My stress levels increased because being a parent means that you are responsible for others as well as yourself. Plus, it’s your job to make happy memories for your children. So I forced myself to ponce about on beaches with beach balls and stuff. Unfortuately, my performance anxiety came on holiday with me, so having a ‘fun’ game of cricket on the beach scored high on my shit-o-meter, especially when I fell over due to poor coordination!

If you’re my kind of autistic, you’re mostly you’re counting the hours until it’s time to go home.

I don’t enjoy holidays. I survive them.

One thing I do when I’m on holiday is to observe other people because they make holidaying look easy!

But there’s usually a drama or two and one year it involved a lifeguard diving into the swimming pool to rescue what turned out to be one of my kids!

There was me and the MIL partaking in a little poolside afternoon tea (might have been lager) while (then) husband was in the pool with the kids and somehow he managed to lose one. Of course, I was thankful that my little ‘Pwince’ had been rescued (and didn’t seem at all fazed by the experience) but it buggered the rest of the holiday up because, you know, people stare, point and say. ‘That’s them!‘.

Thankfully, it’s not always my family providing the drama..

One summer, when my eldest boys were younger, we went to one of those beaches you can park on. You just open the car-boot and unload your shit onto the sand. Fabulous, no? So, there I was, semi-relaxing in my chair. I had a classy plastic tumbler of warm cider and a racy Mills and Boon. (Blaze series). One of the kids was literally burying the other one in the sand. Textbook stuff. The alcohol had taken the edge off my anxiety. The weather was warm, but not hot. It was fairly pleasant.

My shit-o-meter was at a tolerable 3.

Then, a 4 x 4 rocks up, bringing with it a family of five and a dog. They also appeared to have brought their entire house with them – chairs, tables, parasols, wind-breakers, picnic, bats and balls – the works!

The woman got out of the car, stripped to her skimpy bikini and flopped onto a beach towel with a magazine. They had two younger kids (who were seconds away from killing each other) a psychotic dog and a Goth teenager who point-blank refused to get out of the car because the sun was out and they wanted to avoid exploding into a million bats. Obviously!

4 X 4 Man started out by carefully positioning stuff and each time he asked for some help with getting stuff out of the car, his family ignored him. Within fifteen minutes he was ramming things into the sand and beating the living crap out of the wind-breaker pegs with his beast of a mallet. (NOT a euphemism)

It was like watching David Banner turn into the Hulk.

As I recall, the straw that broke the camels back was when one of his kids kicked a ball and it hit him in the face.

4 X 4 man’s face went turned a funny colour.

Then, he completely and utterly lost it!

I’VE HAVE ENOUGH OF THIS SHIIIIIITT!

The kids went silent.

Goth Teen rolled the window up.

4 x 4 Man’s Mrs looked up from Catherine Zeta’s arse.

The dog started to bury itself.

4 X 4 Man jumped up Basil Fawlty style and started throwing everything into the back of the car – his language as colourful as his face. Five minutes (and numerous ‘SHITS later) he and his family were wheel-spinning across the sand towards the exit.

Wish You Were Here. Not.

You see, holidays are not all smiling faces and Beach Boys on the iPod.

My dream holiday would be me locked in a library for a week with a vending machine, a kettle and a huge box of teabags!

My experience in Amsterdam is that cyclists ride where the hell they like and aim in a state of rage at all pedestrians while ringing their bell loudly, the concept of avoiding people being foreign to them.

My dream holiday would be a) a ticket to Amsterdam b) immunity from prosecution and c) a baseball bat.”~ Terry Pratchett

#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.

 

#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

 

 

 

We Are Not All ‘A Bit Autistic’

‘We’re all a bit autistic.’

I’ve heard this a few times. That, or ‘We’re all on the spectrum somewhere’. Whether or not it’s intended to make autistic people feel better (or less different) what it actually does is trivialize the problems that we face on a daily basis.

Autism isn’t a life choice.

When I talk about my difficulties, some people say, ‘Well, everyone’s like that sometimes’ – I have to stifle the urge to punch them in the crotch. (I’m not pervy – I’m just really small)

Key word: ‘sometimes’ – meaning occasionally, not ALL of the time.

People can’t be ‘a little bit autistic’. You’re either autistic, or you ain’t. Simples.

‘Well, we’re all different aren’t we?’

Yes, we are all different, but being different doesn’t make you autistic.

So let’s bust this myth by simplifying into a single sentence.

Autism, is a neurological difference.

And repeat it.

Autism, is a neurological difference.

Once more?

Autism, is a neurological difference.

Unfortunately, there are those who reduce autistic people’s struggles to things that can be overcome or, better still, cured. Some people claim that there is a cure for autism, like the parents of autistic children who genuinely believe that pumping bleach into their child’s bottom will ‘rid them of their autism’. These insane idiots call it ‘a cure’. I call it abuse.

This is the mentality we have to deal with.

People misunderstand. They are dismissive. Or they are abusive. They try to compare their occasional ‘off days’ to the struggles which affect autistic people every second of every day.

Day after day.

Week after week.

Month after month.

Year after year.

Decade after decade.

Until they die.

If everybody were a ‘bit autistic’, the world would be autism friendly 24/7, not just for an hour once a month in participating venues.

If everybody were a ‘bit autistic’, the word ‘autistic’ wouldn’t be used as a insult.

For Example: “Beach boys songs are all just autistic screeching” (Twitter)

Wouldn’t It Be Nice if people didn’t use the term ‘autistic’ as an insult?

See what I did there?

Alas , the author of the tweet doesn’t know that The Beach Boys are one of the most critically acclaimed, successsful and influential bands OF ALL TIME. Obviously, the tw@tspanner wouldn’t know harmonising if it bit him/her on the arse! God Only Knows what kind of crap they listen to. You get me?

Here’s another one..

Jenna Jameson“Meanwhile his legion of autistic, screeching followers make the most disgusting, sexist, hateful attacks on me because I happen to do porn in the past. #Hypocrites (Twitter)

A Tweeter replied: “Autism is not an appropriate word to use as an insult. Please reconsider.”

Jameson relied: “I said autistic screeching, stop looking for a reason to be offended”

Jameson picked him up on a technicality, but she’s missing the point, no? Obviously, she didn’t get the memo that it’s OFFENSIVE!

When it comes to ‘screeching’ – neurotypical girls win hands down.

Case in point: Three teenage girls at a well known fast-food restaurant (one milkshake between them)

One was pacifying herself with a massive candy dummy.

One appeared to be auditioning for BGT.

The other was downing the milkshake while the other two were distracted.

Then, in walks ‘Kenzie’ and they unanimously start screeching like bats.

Kenz? He didn’t know they were alive. He paid for his burger, fries and Coke and fucked off out again leaving the three girls finger-drawing ‘I heart you’ into the misted up window.

The point is..

Search Results

No results for ‘neurotypical girls screeching’.

See?

If everybody was a ‘bit autistic’, the abusive ‘autistic screeching’ meme wouldn’t be ‘a thing’.

Or this..

“A woman who has Asperger’s syndrome was “forcibly removed” from a screening of her favourite film by cinema security staff for “laughing too much”.

If everybody was a ‘little autistic’ would the audience member have reported her?

Would the security guards have thrown her out like a piece of rubbish?

Would other people have acted like total tw@ts?

She said that she frantically tried to explain that she was autistic but a member of the audience shouted “you’re retarded”, while another told her to “shut up b****”.(The Evening Standard)

FYI, If these things were said after she announced she was autistic – technically it’s a hate incident.

In comparison, those girls in the well known fast-food restaurant were being disruptive. They were playing music on their phones and it was louder than the music coming out the restaurant speakers, but nobody complained. Nobody got them thrown out.

When it comes to everybody being ‘a little autistic, one of the best analogies I’ve seen came from Facebook saying that it’s like pregnancy. Most people (including men) will know what back ache or throwing up feels like. Do we hear people saying, ‘We’re all a little bit pregnant?’ No, we don’t because it’s a RIDICULOUS thing to say!

If you’re a woman, you might understand the resentment one feels when husbands/partners attempt to compare something trivial (like a stubbed toe) with the pain of childbirth? You want to bludgeon them to death, right? Well, it’s like that. You hear someone say ‘We’re all a bit autistic’ and you start looking around for things to hit them with. Am I wrong?

Maybe when people say they’re a ‘little autistic’ it’s because they like the idea of the ‘quirks’ bit? That’s fine, but I’m guessing they wouldn’t want to be bullied for it? Or experience the mental illness that comes with trying to survive in a confusing world? Or the rejections in the workplace? Or the chronic conditions? Or the hostility from the general public? And I’m guessing they wouldn’t want to be wiped off the face off the planet for being a minority group, eh, Jenny McCarthy?

If you don’t know what I’m on about, Google the semi-plastic gobshite’s #endautismnow campaign.

When a person says ‘We’re all a little autistic’ they are either trying to show solidarity or trivialising a someone’s struggles – either way, it’s not appropriate or helpful.

To put yourself in my size 4s you have to have known fear, pain, humiliation and a disconnection from those around you. You need to have worn a ‘mask’ to the point that you no longer know who you are. You will have had two separate eating disorders and numerous episodes of anxiety and clinical depression until you completely and utterly lose your shit in your mid-forties. At the same time, you need to have succumbed to a physical illness that limits your already limited life and will do for the rest of your days. From that moment on you have to try to exist in this confusing world in an even more fragile and vulnerable state than you were when you were heaved out of your mother’s fanjo!

Not all autistic people have this kind of back-story, but most do, especially those who were diagnosed late in life. And let’s not forget those troubled souls who are no longer around to tell their story because their lives were ended at their own hands or by those whose duty it was to care for them.

The problems are not with being autistic per se – it’s more to do with how the world preceives us and it’s about trying to survive in a world that isn’t autism-friendly – such as being called a retard when you’re enjoying yourself at the cinema.

While I appreciate that everybody goes through difficult times (and people become ill) it’s not comparable to living life with a brain that processes everything differently. How can it be? Autistic people are born at a disadvantage to most other people, simply because of the way their brain is wired.

If you can’t identify with autistic people’s life experiences, don’t try and claim our identity and, please, don’t belittle the effort it takes for us to exist by saying: ‘We’re all a bit autistic’.

Remember, autism, is a neurological difference.

Stand beside us.

Stand up for us.

That’s how you can support us.

#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!