More Than a Movie..

My fascination with movies started in 1978 when I saw Close Encounters of the Third Kind – a film about aliens, aptly enough. I remember feeling scared, not about the movie, but of everything around me. The crowds. The smells. The cacophony of voices. The familiar feeling of wanting to be sick. The fear of vomiting in public.

I also remember the feeling in my chest as the lights dimmed and the cinema screen flickered into life for the first time in my life..

Cinema was very different in those days and for the young (and undiagnosed) autistic me it made for a conflicting experience because of the queuing, crowds, uncomfortable seating and divs using the back of my chair as a foot-rest. Not to mention the aroma of hot dogs and cigarette smoke! That said, once the film started I was able to lose myself in the fantasy – providing my bladder wasn’t too full, that is.

In contrast, last week I went to see The Crimes of Grindleward – a completely different experience because all of the above (aside hot dogs) has been eliminated. Even crowds, if you choose the earlier showing times.

I’d imagine that a lot of autists love watching movies, either at the cinema or at home. That’s because being able to lose ourselves in fantasy helps to make existence on this confusing planet a little more bearable, no? And when it comes to the wizarding world, I’d guess many autists identify with the ‘non-magical’ versus wizards’ concept because it’s not dissimilar to the NT versus autistic one.That’s not to suggest that we have magical powers, because we don’t. Unless you consider photographic memory a superpower? Or that there is a war between autistic and non-autistic. It’s just that ‘No Maj’s’ don’t understand the wizarding world and vice versa.

There are many autistic traits to be found in the Harry Potter/Fantastic Beasts films. I mean, Newt Scamander has many Asperger traits, despite no affirmation from J.K Rowling. Then again, the film is set in the 1920s so Newt wouldn’t have been diagnosed anyway. And while it can be said that Harry Potter himself isn’t an autistic character, one can empathise with the range of emotions he goes through when Hagrid informs him that, actually, he’s a shit-hot wizard and those things about himself that he never understood – such as his hair growing back overnight – suddenly make sense which is not dissimilar to receiving an autism diagnosis.

Aside the film itself, I consider the credits to be an important part of the experience, but time and time again I find that I am the only person remaining in my seat as the last credits scroll up. It’s always the same. The end of the film comes, the soundtrack kicks in and there’s a flurry of activity with people standing up, coats being put on and a general mass exodus towards the exits. Some people hang on for the crowds to disperse and then they get up and leave which just leaves me..

I always watch the credits. One reason is that I like to see the names of the people who made the film possible. Another is that I’m a music fan and there are often several pieces of music of soundtrack played during the credits. Also, there is often something extra mid-credits or at the very end. Some movies use bloopers and in others the post credit scenes are a crucial part because it ties the movie up or leaves the audience (or who ever is left) in a state of anticipation.

*SPOILERS WARNING* At this point I’m going to use UP and Christopher Robin as examples so if you haven’t seen those films and would like to, please scroll down beyond the italics.

In the case of the animated film, UP, the credit scenes flip through Carl’s photo album and we get to see the adventures he has with Russell and Dug. As we see in the film, this is what Ellie wanted him to do after she was gone. Blended with the beautiful (and award-winning) score by Michael Giacchino these scenes brings this movie to a pleasing end. Everything is tied up and you leave the cinema feeling happy.

A more recent example is Christopher Robin where, after a few minutes of credits, there is a little sequence where all the characters are having a dance and a sing-song on the beach where there is an old man playing a piano. The old man is no other than Richard Sherman, a nine time Oscar nominee and writer of some of the most memorable songs Disney ever made. It’s a sweet touch and one that many people never got to see because they left the cinema as soon as the credits started to roll.

If I hadn’t stayed for the Fantastic Beasts credits, I wouldn’t have heard the fantastic soundtrack. Or learned that Mr Depp had a small army of people pandering to his every need. Or that his scary contact lens had its very own technician.

Then, there’s the flip from fantasy to reality..

I would happily sit in the empty cinema long after the credits have finished because I need time to adjust from fantasy to reality. But that’s not possible when the cleaners are giving you the evils because they can’t start cleaning up until you’ve shifted your arse.

In my younger days, I would go home and reenact everything I saw and then I would work the characters into my world using their phrases, mannerisms and style. I know now that it was part of masking – of being somebody I wasn’t because I couldn’t be myself. In those days, I was more out of this world than I was in it – something which my mother would testify to, if she were alive. She always said that I never seemed to be here. She was right. I was far, far away..

I wish I could take the credit for this quote, but it comes from a fellow autist in response to an online post I made about staying until the very end of the credits. I think that many of us will identify with it.

Earth is simply where my body is tethered…

These days, I don’t go home, shut myself away and reenact. Those days ended when I realised that nobody else I knew did such a thing – not on their own anyway. Drama was never an option for me due to my social and communication problems. Not to mention, crippling anxiety. Any enjoyment of being able to become different characters would have been lost in the discomfort of everything else. And so it’s down to music, literature and the movies to take me away from life.

In the cinema, the endorphins flood my body. The feel good hormones. The ‘I can fucking do this‘ hormones!

Then the experience ends. I push open the exit door and reality slaps me in the face with atomic force.

The anxiety. The weariness. The disconnection.

I’d give anything to turn around and walk back into that darkened room because that room is my wardrobe into Narnia. It’s a portal to another world – a world that understands me.

Knitting to Relieve Anxiety

When I was little, I asked my mum for a knitting set. I can’t remember why I deviated away from my usual Enid Blyton books. I just remember that I did. I also remember not knowing what to do with it once I had it. Nor was there anybody at home who could teach me. Needles (intentional typo) to say – the set was relegated to the back of my wardrobe and eventually to the local jumble sale..

Fast forward a couple of years to primary school *twitch* to where knitting was compulsory. Sadly, any interest I had in learning the craft was over-shadowed by my debilitating anxiety..

Our first task was to knit a hat or mittens. We got to choose which so I chose the mittens. The other children were able to get on with their knitting but my brain wouldn’t retain the information on the paper in front of me and I was too embarrassed to admit that I didn’t always understand the instructions and I was too anxious to ask for help.

I understand now that it’s virtually impossible to learn a new skill when overwhelmed with anxiety. But in those days nobody knew that I was autistic. Not even me.

Eventually the weeks passed and we moved onto needlework. More needles! Oh. Joy.

This time I ended up being made to stand on my chair as one of the more sadistic teachers ripped my work to shreads (literally) in front of the entire class. Not for the first time in my life, I was humiliated. And it wouldn’t be the last time either. It was, however, the last time that I would be obliged to knit or sew as those crafts would become optional in high school.

On the negative side, metal and wood work were compulsory and I was shit at those too. 😦

Ten years later, my mother-in-law encouraged me to try knitting again and soon we spent many a happy hour knitting and nattering. It’s thanks to her that I was able to fall in love with the craft and overwrite those horrible memories of school.

40 years on from scholae horribilis, I can whip up a scarf or even a jumper as long as it involves the words ‘easy knit’ on the pattern. However, the problem with easy knitting is that it can be done on auto-pilot which means that there is plenty of room for Captain Crazy and the Psycho Platoon to march into my mind.

Knit. Knit. Knit. What’s that pain in my chest? Knit. Knit. Knit. What if I have a heart attack? Knit. Knit. Knit. What if the door is locked and the paramedics can’t get in? Checks tension. What if I can’t reach my phone? Knit. Knit. Knit. Is that asprin is in date..

You get me?

I figured I needed to challenge my brain, but patterns freak me out as numbers and sequencing = vacant face, though the common term is Dyscalulia.

The good news is that I was blessed with a stubborn-arse streak as well as my autistic brain. So last week  I found myself sauntering (I don’t saunter, but I like the word) over to the cash desk in the local craft shop clutching two balls of wool and a pattern for a fairilse hat. Yes, fairilse. When I go for it, I really go for it!

Long story short: it took me TWO DAYS (and much effings) to complete ONE INCH of effing fairisle, and that includes unpicking the effing thing SIX EFFING TIMES!!

The only way I could do the pattern was to write it down on note paper in a way that my frazzled brain can cope with. For instance, the pattern is twelves stitches (repeated) so I broke it down into three lots of four and ticked them off as I went along. I also have a stitch counter which is veeeeery stimmy. *drools*

Doing the pattern was time consuming but I was TOTALLY engrossed in what I was doing – therefore – no room for anxious thoughts. It means that the cycle of crazy thoughts was broken and that can only be a good thing. 🙂

For me, knitting is a very sensory experience and when done in a relaxed manner, it can be very beneficial to our health as well as our wardrobe. And it’s stimmy. While I’m click-clacking with my needles, I am not picking the skin off my lips. Or scabs off my skin. I know. I’m grotty innit?

I also like the different colours of the yarns because I am a colour freak. Me and colour is like tin foil to a cat! I recently had to prompt myself to move from in front of the Sirdar multi-coloured range as I was starting to drool. That, and the owner of the shop was giving me a funny look..

I especially love those yarns that change colour. It’s almost magical I tell you! But most of all is the sense of achivement in having created something that is not shite. It makes up for never having finished those frickin’ mittens at school. *TWITCH* Or everything else that I was unable to do or complete because of my anxiety.

Cor!

Knitting won’t cure me of my anxiety because I can’t change the rest of the world to suit me – as amazing as that would be. Anxiety is hardwired into me, along with autism. But I can see how it could cure anxiety in the non-autistic brain so maybe it’s worth digging out those long forgotten needles that have been gathering dust in the back of your wardrobe?

As for the little knitting set that ended up at the jumble sale? Well, I hope it found it’s way into the home (and hands) of a child who created something beautiful with it and that it was the start of a lifetime of creating beautiful things while watching Coronation street or Eastenders. Warms yer heart doesn’t it?

Or it ended up in landfill which is just as likely, but not as heartwarming. 😀

“Properly practiced, knitting soothes the troubled spirit, and it doesn’t hurt the untroubled spirit either.”
Elizabeth Zimmerman

 

 

 

 

 

 

 

 

Autism: The Dark Side

Generally, I have found autistic people to be supportive and friendly, but over the past few years it’s become apparent that the autistic ‘community’ has it’s fair share of.. how shall I put this?

Arseholes.

You see, there is this so called ‘war’ between the neurodiversity movement and the Autistic Dark Web and, believe me, dark is what you get. So switch on those SAD lamps, folks and I’ll take you to the dark side..

What is The Autistic Dark Web?

The Autistic Dark Web is a group of autistic people who find little or no positivity in being autistic and most would rip your arm off for a cure, though I doubt even they would thank you for a bleach enema! 😮

I visited the Dark Side recently and it was, erm, unnerving. It suddenly went icy cold and It was as if all the happiness had gone from the world.. or am I confusing it with the Dementors in Harry Potter?

How To Spot A Dark Webber

  • The rapid drop in temperature when you engage with one. (Brrrrrrr)
  • Dark images. (Menacing looking figures wearing hoodies)
  • Images of Buddah (Bit of a misnomer)
  • They often answer your question with a question. (Avoidance strategy)
  • You point out that they haven’t answered your question.
  • They belittle you by saying that ‘your’ effing inept at communication’.
  • You suggest they check their grammar before insulting others. (low blow, but what the hell)
  • They lose their shit and block you, but not before they call you a banker (intentional typo) one last time.

To be fair, some proponents of the Dark Side are able to debate without resorting to abuse. They are clearly articulate, but even then there is an air of superiority about them that prompts bile to reverse itself up one’s oesophagus and into the mouth. You get me?

But there is one subject in particular which has most dark webbers foaming at the keyboard and that is self-diagnosis.

Examples

“Stop speaking over autistic people. Plus stop promoting self diagnosis, it’s still dangerous.” ~ Twitter

I engaged with this delightful young lady and she called me a swear word that rhymes with punt. 😮

More?

“i dont get why people think they can self dx autism cuz when i was diagnosed they had to ask my mom about my early childhood that i dont remember at all” ~ Twitter

The professionals would have had a hard job asking my parents about my early childhood seeing as they were both dead. Aside nabbing the nearest medium and summoning them up via a seance – there wasn’t a whole lot I could do about it either, but, surprise surprise, I still got a diagnosis.

How about this one?

“People give me headache. If someone tells you they felt ill for a decade and never addressed it save for adding it as selfidentity either they are lying or need to be seen as victims. I thought for years autism may explain things but never identified autistic until dx. #respect #” Twitter

Autism isn’t an illness, but it’s a popular argument over at the Dark Side and one dark webber used a brain tumour as her argument as to why it’s wrong to self diagnose. Is it a credible argument though?

Nope.

If you think you have a brain tumour, you generally see your GP and pronto or risk dying. To my knowledge, nobody has ever died of autism. Autistic people are at a higher risk of dying earlier due to co-morbid conditions (not to mention the strain of having to deal with pillocks on social media) but autism itself can’t kill you. A brain tumour, however, can render you as dead as a dodo!

There are valid reasons why people self-diagnose such as accessibility, lack of money for a private dx and having autistic children whose needs come before their own. It should also be noted that diagnosis isn’t always beneficial. However, the dark ones claim that the real reason people don’t go for assessment is because ‘they know they won’t meet the criteria.’

Say wuh?

Then there are those whose debating skills just blow you away..

“Get tested or shut the fuck up.” ~ Twitter

Personally, I think this should be the tagline for the Autistic Dark Web.

As it is, I self-diagnosed for four years. The reality is that most self-diagnosers go on to receive a formal diagnosis, but simply being understood by another human being is enough for some. However, you won’t receive any support from dark web types who categorically state that you are NOT autistic until you have an official diagnosis and, what’s more, you have no business identifying as autistic!

Then there’s this.

“#autisticdarkweb I’m going to say it. If someone is married (or in a relationship), has children, has friends, and a good career or job, then they are not autistic. And should not be diagnosed as such because they are obviously not disabled by their ‘autism'” – Twitter

*sets fire to diagnosis papers*

In response to the above tweet – I’ve been married twice and I have three children. I’ve had five jobs over my lifetime and seven ‘real life’ friendships – none of them instigated by me. I’ve also had two eating disorders (A+B), a nervous breakdown, anxiety disorders, depression, OCD, chronic illness, IBS, chronic migraines, sensory disorder, insomnia and so on and so on..

At this point, I’d like to underline the living shit out of the next two sentences. Alas, WordPress only allows for one..

It’s the anxiety and the eating disorders and the chronic illness and the depression and the mental breakdown etc which gives a clue as to how hard it’s been to achieve all of the above.

In that person’s opinion, I can’t possibly be autistic because I tick most of those boxes. But the problem with ticking boxes is that it doesn’t account for the gargantuan effort it takes for an individual to achieve such things. Nor does it account for the cost to mental and physical health. Being a wife and mother doesn’t make me any less autistic – it just means that I’ve had to work hard to accoumplish it.

I’m also the mother of a really amazing autistic boy who has had many challenges to overcome in his nine years, including experiencing a hate incident at eight years old. But I don’t hate autism and I don’t hate being autistic because I have nothing to compare it to, so what’s the point?

To the dark webbers who claim that I’m not autistic because I have a family and don’t hate myself.

I didn’t expect to experience abuse or exclusion by other autistics. Granted, this was naivety on my part because autistics are clearly no different to neurotypicals when it comes to conflict. This is because humans are hardwired to fight. That said, conflict takes a lot more out of hyper-sensitive autistics like me and so it’s with regard for what remains of my sanity that this post draws a line under my interaction with the Dark Web (and Twitter) as my month off has led me to realise that it’s bad for my mental health.

Having been frost-burnt by several dark webbers, my advice is to leave them well alone – the hardliners more so. But should you decide to venture over to the Dark Side to take a peek for yourself, I suggest you wear your thermals.

However difficult life may seem, there is always something you can do and succeed at. ~ Stephen Hawking

 

Only in Dreams..

Spandau Ballet are performing in my living room, but the concert is cut short when Tony Hadley suddenly flounces off in the middle of Only When You Leave. (Apt, no?) The Kemps are shaking their heads in disbelief and the audience are on the verge of turning hostile when in strolls Nick Rhodes from Duran Duran..

Nick takes Tony’s place as lead singer, which is Strange Behaviour (see what I did there?) because his place has always been behind his impressive organ keyboard. Whatever. I’m up for it because Nick is my life-long crush – a man whose wheelie bins I would lovingly trawl for traces of his DNA. (not really, M’Lud.)

So, what’s a stalker girl to do? I have to make my existence known to Nick or I might as well DIE!

Gets weird (er)

I find myself on an old-style double-decker bus trying to out-run a typhoon. (Typhoons in Manchester?) It’s during the confusion that I corner Nicholas and confess my love for him – especially during the years 1980-1987..

At this moment he pulls me towards him and kisses me!!

I don’t want this moment to end. Ever!

No doubt I was attempting to snog my pillow thinking it was Nick’s gorgeous face, but this was one dream that I did NOT want to wake up from – typhoon or no typhoon!

When it comes to dreams, most of mine are weird and not in a pleasant way, but then I’ve always been a bit prone to weird dreams..

I dream a lot, which is interesting as studies have shown that a lot of autistic people have poor dream recall. Other studies, however, have shown that people with Aspergers dream vividly and recall their dreams very well.

I’ve had anxiety problems all my life and severe sleep issues for the last seven years so I wonder if anxiety plays a part? Or the menopause? If I remember rightly.. my dreams always turned a bit funky when I was on my period – aka – minus the calming influence of oestrogen.

I would imagine that many autists have anxiety, so high levels of stress hormones in the body at night will no doubt affect the quality of sleep and influence dreams. I also know that If I have a nightmare in the early hours, I will have subsequent nightmares because the stress hormones have flooded my body – therefore there is zero chance of me achieving dreamless sleep.

I’ve also had premonition and visitation dreams.

No, I’m not a nutter. Well, maybe just a little nutterish?

See, there is a marked difference between your ‘bog standard’ dream and a visitation one because normal dreams are fragmented and make no sense – especially if you’ve been at the cheese. For instance, you might dream about your house, but the kitchen is a swimming pool and your back garden is a supermarket and a grizzly bear is chasing you with a wonky trolley that transforms into a sports car. How many grizzly bears have you EVER seen driving a car? These kinds of dreams are your brain trying to make sense out of the information it’s taken in during the day – often without you realising it. Visitation dreams, on the other hand, are rational except the people in it (aside yourself) are often dead. Or about to be, as many people dream of loved ones at the same time that they die. They often appear younger and/or in ‘good health’. You wake from such a dream convinced that you’ve experienced something far too real to be a dream. What’s more, you never forget it.

There are theories about visitation dreams, but I won’t bother with the ‘psychotic episodes’ one that pseudosceptics insist on peddling because the thought of an afterlife gives em the willies!

One theory is that it’s to do with the grieving process and that may well be true, except that many of these dreams foretell the future. In one of mine, I saw my dad sitting in the same crematorium where his funeral service had been held, with his arm protectively around his brother. I distinctly heard Dad tell my uncle that he would “take care of him”. The dream felt very real. I didn’t understand it at the time, but it made sense a few weeks later when we got the news that my uncle had died – just six weeks after my dad’s death!

I remember that dream very clearly – as is the case with visitation dreams.

Case in point: My Nick Rhodes dream has been sitting in my drafts folder for months. I’d written the details down within half an hour of waking up because I knew I’d forget them otherwise. As a rule, I don’t make a habit of writing about my dreams, but this one was about Nick Rhodes – the love of my teenage life. The man I used to daydream about pulling up at the school gates in a big limo and carrying me out of double-maths like Richard Gere in Officer and a Gentleman. The fact that I was a zit-ridden fourteen year old didn’t come into it, but let’s not get bogged down with the legal implications as it was only ever going to be a one-sided relationship between Nick and my adolescent mind, y’know?

The point is that this dream was special and a most welcome change from my usual Tarantino-esque offerings from my insane brain.

I had completely forgotten about the dream until I came across it one morning while I was looking through my unpublished posts. I read through it and honestly don’t recall any of it. I just know that it must have happened for me to write about it. In contrast, I remember visitation dreams in vivid detail, even though they happened years ago. I’m ruling out wishful thinking because if that was the case, surely I would remember every detail of my Nick Rhodes dream – especially the kiss part? Alas, I don’t remember it at all. 😦

Do you remember your dreams? Or do you wake up blissfully unaware of where your sub-conscious mind has been?

“I think we dream so we don’t have to be apart for so long. If we’re in each other’s dreams, we can be together all the time.” ― A.A. Milne ~ Winnie The Poo

 

 

 

 

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.

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!

 

#Take The Mask Off: What It’s Like To Wear The Mask

I’m an actress – acting is what I do. It’s what I’ve always done, but it’s not a profession or even a hobby. It’s survival.

I can pin-point the day that I realised that I was different. It was my first day at school. I was five years old. Up to then, I’d lived in my own world with occasional visits to this one.

I remember that I didn’t like this world very much.

I remember strangers talking to me.

I remember strange voices saying, ‘Aren’t you speaking to me?’

I remember voices asking if I was shy.

I didn’t want to talk to them.

I didn’t want them to talk to me.

It wasn’t shyness. It was selective muteness. That’s what happens when the world gets too much. I shut down. I stop talking. I become mute. It’s my safety valve. Without this ability to shut off, I’d totally (and regularly) lose my shit.

I started school in 1975 and the other children treated me differently from the onset. My first day was shit and it set the tone for the next ten years. Teachers told me off or ignored me. Either way, they didn’t understand me. I was bullied, as so many autistic kids are. Only I didn’t know that I was autistic. I just knew that I wasn’t like everybody else. Eventually I understood that I had to interact with people in order to fit in. I had to be more like them and less like me.

That’s when I learned how to perform.

So my life has been one big performance.

I’ve taken inspiration from many people. Some female, some male. All researched via TV, books or people I’ve come into contact with. I copied their voices, their mannerisms, their style (where sensory issues allowed) – so much so, that I lost my own identity.

I forgot who I was.

Was I an alien? Was that why I found it so hard to fit in?

Had I actually been birthed by a human being?

Or had I somehow landed on the wrong planet?

Performing. Chamoflaging. Masking. Whatever you call it, it means the same thing – NOT BEING YOU!

As the years have gone by, I’ve tried my hardest to be like everybody else, except that masking came at a huge personal cost.

One example of how I mask is with eye-contact.

I struggle with eye-contact, though on a good day, you probably wouldn’t guess.

I don’t like looking into most people’s eyes and I don’t like most people looking into mine. It’s an incredibly sensory experience for me – one which overwhelms and makes me feel vulnerable. Like they can read my crazy thoughts? Or I’m standing in my bra and pants. Either way, it’s not good. Then, in my mid-twenties I taught myself to look just above someone’s eye. I’d read it in a book somewhere. It helped, but the effort comes in remembering where to look and when it’s appropriate to look away. It’s in trying to take in what someone is saying while your concentration is elsewhere. There is this inner monologue going on reminding me what to do and when. It’s not natural, therefore it’s not effortless and the more anxious I am, the worse my eye-contact gets. When I’m really anxious, my eye-tic kicks in so people think I’m winking at them. *sigh*

I’ve fought against the mental and physical exhaustion that comes with trying to be something I’m not. Diagnosis helped me to understand who I am and why I experience the world differently and it took some of the pressure off. However, the diagnosis coincided with a nervous breakdown and though I wouldn’t wish one on anybody, it couldn’t have been more timely because I was unable to mask during my assessment. What they got was the real me because I had no energy to pretend otherwise.

Burnout is something that many autistic people encounter at some point in their lives. I did well to get to 46 before I broke down, but when I did break, the fallout was catastrophic. I didn’t know what the hell had hit me. I thought I was shuffling off my mortal coil. Or going mad. Or both. What I didn’t know was that my years of pushing myself beyond my limits had set me up for a chronic condition called Fibromyalgia. Look it up, it’s shit! At the same time, my life-long anxiety turned feral and my entire body started malfunctioning.

I was really unwell.

Masking had been draining the life out of me.

The only way back from that mental crap-hole was to be myself, not that I had any energy to mask anyway.

The only way back was to stop forcing myself to interact because it’s what society expected me to do.

The only way back was to be me.

I live with the knowledge that my health has suffered because of having to mask and it’s hard not to grieve for what’s been taken from me over the years. I didn’t choose to be autistic. I didn’t choose to be different. I didn’t ask people to be arse-holes to me. For most of my life, I considered myself to be the problem to be me, but I am not the problem.

I never was.

I can’t discard the mask completely. It’s impossible. There will be situations where I need to perform in order to get through them because not everything is in my control. Nor can it ever be. But I know that I can slip my mask on occasionally and draw from all those years of acting. The difference is that I give myself permission to leave when I’ve had enough and to accept that I will need recovery time afterwards and to lose the guilt-trip. Self-care is better late than never, yes?

My problems stem from trying to force myself to fit into a world that isn’t mine. Or that’s how it feels. Shove your size 4 foot into a size 2 shoe and it’s going to hurt, right? Try and walk in those shoes, every single day, and you’ll cripple yourself. You get me? The consequence is the damage to my physical and mental health. I’m basically f**ked and I can’t change any of it. I can’t rewind the clock. Not that it would help if I could because autism had a different meaning in those days. All I can do is be here as I was meant to be. As I am wired to be.

To help me to remember, I keep these words where I can see them everyday.

My darling girl, when are you going to realize that being normal is not necessarily a virtue? It rather denotes a lack of courage. Alice Hoffman ~Practical Magic