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.

#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

 

 

 

#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!

 

Autism: Highly Functioning?

There’s a label when talking about autism.

‘Highly-functioning’.

It’s a term intended for professionals, but one that is used generally. In this post I’m going to try and illustrate why hearing this term makes me scream inside.

You can dress yourself? You’re highly-functioning!

I can dress myself, but sometimes I wear those same clothes for days because the thought of having to put something ‘new’ on makes me anxious. I do change my undies daily though – in case you were wondering?

I have sensory processing issues and hate to feel constricted in any way – so neck-lines, waistbands and sleeves have to be just right or my brain snaps. Also, I can’t tolerate anything that isn’t almost exclusively cotton. How I survived the seventies with it’s obsession for nylon, I’ll never know. Maybe that would explain whay I was a little shit most of the time?

I can physically dress myself, yes, but it’s a sensory nightmare.

You can wash your own hair? You must be highly-functioning!

I can physically wash my hair (though it’s getting to be more challenging now with the fibromyalgia) but it will be 80% dry-shampoo by the time I do wash it – which will be when I can’t physically get a brush through it. Or my scalp itches -whichever comes first!

I have a mobile hairdresser who comes to sort my hair out a couple of times a year. Even though she’s lovely (and technically brilliant) and I always look forward to seeing her – I still get the inevitable migraine which comes with having to make conversation. Recovery usually involves painkillers and at least three hours sleep.

You can apply make-up? You’re highly functioning!

I’ve been wearing make-up since 1983, but it’s a mask. Without it, I feel vulnerable. Might as well be wandering around in my bra and pants, innit? However, my routine rarely varies. I use the same products every day. Even if I go completely nuts and buy something new, I invariably revert to my old stuff because it’s familiar.

I don’t like brushing my teeth as they are sensitive as hell, but my fear of having fillings and extractions overrides my sensitivity to brushing.

Just because I can do something doesn’t mean that it doesn’t cause me discomfort or distress.

I used to be the opposite way. I bathed every day. Sometimes twice a day. Occasionally, three. It’s a miracle I’ve any skin left! My hair got washed daily, sometimes twice. It wasn’t necessary. I was just a nutter. Then again, my personal care has always been more psychological than beauty or fashion.

You clean your house? You must be highly-functioning!

Again, it’s all about the realms of what’s considered ‘normal’.

I used to clean obsessively. I would clean the entire house (including hoovering) every single day. The living room carpet got hoovered at least three times a day. I mopped the kitchen floor just as frequently and disinfected everything that was wipeable. I mowed the lawns as many times as I thought I could get away with without coming across as lunatic, but I admit that I once mowed the same lawn twice in one day! That’s not gardening. That’s a bit nuts!

As soon as a dandelion reared it’s head, I was out there with my Flymo. Then I’d be on my hands and knees cutting round the edges of the lawn with a pair of scissors. Yes, I was that person!

The anomaly is that I love to see dandelions elsewhere..

I realise now that it was about control. The same way my eating disorders were about control. I just didn’t understand why life was so hard for me. So I’d scrub, disinfect and mow until the late hours. Then, I’d numb my brain with homebrew. As the Smiths song goes: “I was happy in a haze of a drunken hour but heaven knows I’m miserable now.” For a while, the world was tolerable. I could do this life thing, yeah? Then I’d overdo it. I’d vomit and the next morning I’d wake up to find the world was as confusing as it ever was.

Vomiting aside, my corner of the world HAD to be perfect to compensate for the chaos outside my front door and that inside my head. Nowadays, half an hour of light housework equals three hours resting on the sofa. I am completely the opposite way, but it’s not by choice.

You do your OWN shopping? Are you sure you’re autistic?

I’ve always found shopping difficult because of the social aspect, sensory overload and the range of choice. Choice, you see, overstimulates my brain and the more anxious I become, the more I am unable to make choices – even simple ones like between coffee or tea.

A super-functioner and I can’t make a simple decision between tea or coffee? What am I like?!

Nowadays, I have the added joy (not) of fibromyalgia which limits me even more. For the days when I can’t cope with the supermarket, I do online shopping.

You can drive? Super-Functioner!!

Fancy that, an autistic person with a driving licence!

I was determined to drive because I struggled so much with public transport. Lesser evil, right? With me, it’s always been a case of one fear overriding another. However, getting myself from A to B is a different matter entirely..

For example: Recently, a 20 minute trip to Hobbycraft involved me virtually ‘driving’ the route via Google street maps, even down to checking out the exit route in the car park. Who does that, right? It took me twenty minutes, but it was necessary in order to familiarise myself with the route.

Diversions bugger my brain up. I’m still dealing with a diversion from last week! I NEED to be able to get into my car and drive the same route as I always do, but life isn’t so simple, is it? It creates diversions and obstacles all of which have a knock-on effect with me.

I establish routines and end up going to the same shops and parking in the same places which makes my world safe, but small.

I’m also crap with directions and distance. My sat-nav’s most used commands are ‘When possible do a U turn’ and ‘Route recalculation’. Nuff said?

Some days I can’t drive at all due to brain fog. Better safe than sorry, right?

You can communicate verbally? That makes you highly-functioning!

I can talk. I had no speech delay that I am aware of. I love words, only I prefer to type them. I’m much better at communicating via the typed word. But even then, it’s not simple, as my need for perfection means that my posts are edited 35 plus times! I can’t just ‘knock’ a post out, like most bloggers can.

When it comes to actual speech, I sometimes become aware that my voice has become ‘monotone’ and I have to prompt myself to change pitch. When I’m excited, I talk too fast. When I’m exhausted, I talk too slowly and my brain ‘buffers’. As in, something gets lost between the thought process and communicating what’s in my head.

Then I have meltdowns where I have this kind of ‘verbal diarrhoea’ thing going on. Or I stop talking altogether. This is known as a ‘shut-down’.

Many of us have co-morbid conditions as well as being autistic. It’s life farting in your face, then following through. As if life isn’t hard enough, right?

I also have Fibromyalgia which means I am in some level of pain or discomfort all the time. I also have OCD going on, which is a pain in the arse.

Fibro what? Isn’t that something you take for constipation?

No. That’s Fybogel!

Having fibromyalgia means that I am less able to function than ever and I will have to learn to live within even more limits as this illness is chronic and life-long once it’s established. I also most likely have Dyscalculia (number dyslexia) which makes life difficult as maths is such a necessary part of it. I’ve probably been short-changed out of hundreds of pounds in my time. However, I stand by my argument that trying to learn algerbra was a waste of sodding time!

Ooh. You have a learning difficulty? That makes you low-functioning then?

I was in the top set for English. I scored 98% in my history mock exam because I was (and still am) obsessed with the past. I was also in the bottom set for maths. So, you tell me?

I give up. I don’t know what you are!

I’m an individual.

The term ‘highly-functioning’ belittles how hard it is to get through every day. Just because I don’t need help putting my knickers on, it’s presumed that I function ‘highly’? In reality, every day takes a great deal of effort simply to exist. I’m always in some level of pain or anxiety – even in my sleep. Some days I barely function as migraines wipe me out or I reach my capacity to cope with anything unfamiliar or taxing. If you’re wondering what fibromyalgia has to do with autism. The answer is – EVERYTHING! It’s relative because a life of anxiety makes autistic people prone to conditions like fibromyalgia.

Yes, I can physically do stuff, but it comes at a cost, both physically and mentally.

I get overwhelmed quickly. I need regular breaks from social media/internet due to information overload. What energy I do have is reserved for my role as a mother. It’s primeval, because despite my health, I ensure that my son’s needs are met. I know the days of obsessively cleaning are gone because I just don’t have the strength and that causes me considerable distress, but it means that my obsessions shift elsewhere – as I discovered when I developed heath anxiety last year.

The term ‘low functioning’ is equally as belittling because in labelling someone ‘low-functioning’, society lowers it’s expectations of this person. They are pitied, rather than respected. Or worse, ignored. Just because a person needs help with daily care, doesn’t mean they can’t contribute to the world in a meaningful way!

A highly-functioning person might barely be able to function physically (or mentally) on some days, but there are expectations of them because of a term which most people take at face value. This is why we burn out repeatedly until we become chronically ill.

Is this really functioning highly?

Some days I barely function at all.

I am spending more and more time in survival and recovery mode and if you don’t understand those terms, lucky you!

The term ‘highly functioning’ implies that I am successful at life. That I can do things with ease?

To those who take one look at me and say, ‘You’re autistic? You must be highly-functioning then!’

COME AND LIVE MY LIFE FOR A WEEK. THINK MY THOUGHTS. FEEL MY FEAR, PAIN AND EXHAUSTION. TOUCH MY F**KING PLUGS UMPTEEN TIMES BEFORE YOU CAN LEAVE THE HOUSE – THEN TELL ME I’M FUNCTIONING HIGHLY!

*hyperventilates into paper bag*

The point of this post is to show that being physically able to do something comes at a cost. I’ve reached the point where I’ve worn myself out and I now I’m constantly ill.

If you look close enough, you’ll see the exhaustion in my face. You might notice the way my body slumps with fatigue. You might even see a tear fall unchecked or hear a door slammed in frustration. These are hints to an inner chaos – a chaos I’ve known all my life. Only death will bring me any real peace, but I’m not suicidal. I’m in no hurry to leave this life because there are souls who that make this struggle worthwhile. Three of them call me ‘Mum’ and I’ll fight until my last breath to be with them.

And it is a fight. A daily battle to exist, but it would be a lot easier if people would only take the time to respect us for who we are.

High or low-functioning – the terms are misleading and unhelpful. What we are is individuals.

All images are in the public domain via Creative Commons

 

 

 

Now That’s What I Call Autism!

People of a certain age (*coughs*) will remember when a compilation album called Now That’s What I Call Music! came out in 1983.

I was 13.

What are we up to now? Now That’s What I Call Music 7509?

I’m almost 50!

No doubt, the multi-gazillion franchise will go on long after I’ve stopped breathing..

*Note to self* Record funeral mix-tape and call it, ‘Now That’s What I Call Being Dead!

The difference is that I could probably name all the tracks on the original album, whereas I couldn’t name a single track on the latest one. This is probably because I’m geriatric (not really) and geriatric people tend to live in a musical time-warp when they were youthful and had their own teeth.

I’m no music snob, but the auto-tuned, sampled-to-the-hilt crap that’s trawled out to the masses these days makes me want to hack off my own ears. What happened to pure talent? You could shove me into a recording studio with all its sorcery and I could could bang out a s(hit) record in three hours flat!

Granted, I would have to pay a body-double to do the bumpin’ ‘n’ grindin’ on the video, as that particular ship has sailed thanks to arthritic hips. Actually, I do grind, but it’s more of a ‘bone on bone’ thing which isn’t as arousing, especially when it’s combined with the stench of Deep Heat.

Anyway, back to Now That’s What I Call Music or as my dad used to call it, ‘That’s What I Call a Load of Crap!’

So, some of us bought (or were bought) Now That’s I Call Music on vinyl (album, not flooring). The rest of us pestered our mates/siblings to borrow it, which they did, albeit reluctantly, and only after issuing a warning of certain death if said album was returned to them with any defects, such as scratches or tea-stains on Tracey Ullman’s face.

The beauty of cassettes was that you got to spend hours of your life jamming biros into cogs trying to wind the b@stard tape back in. Remember that? Happy Memorex, eh? See what I did there? I’ll get my coat!

In the spirit of those bygone times, I present to my fellow autists, a mix-tape.

Enjoy and feel free to add ‘requests’ via the comments section.

A Side

1. Don’t Stand So Close to Me ~ The Police (for the claustrophobics, obvs)

2. Move Closer ~ Phyllis Nelson (for the space-invaders)

3. Too Much Information ~ Duran Duran (social media overload)

4. Anxiety ~ Good Charlotte (‘I am anxiety free!’ said no autistic person. Ever)

5. Green Day ~ Minority “Stepped out of the line. Like a sheep runs from the herd. Marching out of time. To my own beat now”. (blog author adds: So, up yours, haters!)

6. Pushing The Senses ~ Feeder (I push mine round in an old Tesco trolley) Too literal?

B Side

1. 99 Problems ~ Jay Z (I got 99 problems but the Nintendo Switch aint one)

2. Heaven Knows I’m Miserable Now ~ The Smiths “I was happy in the haze of a drunken hour, but heaven knows I’m miserable now” (You get pissed, wake up and realise that everything is still shit)

3. 19th Nervous Breakdown ~ The Rolling Stones (currently on my 20th)

4. Spinning Around ~ Kylie (literally, though not necessarily in size zero hot-pants)

5. Communication Breakdown ~ Led Zeppelin -“Communication breakdown. It’s always the same. I’m having a nervous breakdown. Drive me insane! (self-explanatory, really)

6. Beloved Freak ~ Garbage ~ “People lie and people steal. They misinterpret how you feel. And so we doubt and we conceal” (adoring you from afar, Shirley Manson, but not in a criminal way)

Bonus track – Senses Working Overtime ~ XTC ~ “I got one, two, three, four, five senses working overtime”. (My senses literally never clock off!)