Fibromyalgia and Social Media

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I have a love/hate relationship with the fibromyalgia groups on social media. Sometimes I’m comforted by the knowledge that people understand how fibromyalgia feels, and sometimes I’m frustrated by the amount of negativity and rudeness towards those who are sharing their stories in order to help others.

Fibromyalgia is a horrible condition – no question about it. Those who suffer with it didn’t choose to develop this crap condition, but we do get to choose our attitudes and I generally choose positivity because it’s healthier.

Don’t get me wrong. I understand the need to vent on social media. It helps to know that people understand what we’re going through. It also helps to have somebody offer a virtual hug on our bad days, but if all we’re doing is being negative – and feeding off the attention which our negativity attracts – then we could be doing ourselves more harm than good because it can become an addiction like any other, and all it needs are a few words..

Life sucks. I’m fed up with everything. No one cares.

Que the sympathetic comments and crying emojis…

My perception is this..

Life sucks – Yes it does, and shit happens to everybody.

I’m fed up with everything – Only ‘we’ can change this.

No one cares – They do, but sometimes people don’t know how to be around people who are unwell – especially when it’s an invisible illness like fibromyalgia.

Logging onto loads of sympathetic comments comforts us for a short while, but it doesn’t change our situation.

I’m continually seeing members shutting down anybody who tries to be positive. If somebody posts a positive quote, they will ruin it with their negativity, and a thread which started in positivity ends up being deleted.

Example: A lady recently posted that she’s been ‘blocked or kicked off’ several fibro groups because of her ‘weight loss success story’.

Blocking somebody because they shared a success story?

Am I the only person who is flummoxed by this attitude?

I believe her because I’ve seen it. Mention the words ‘weight loss’ and ‘exercise’ in a positive way and the lynch mob are out in full force – before you know it, you’ve a metaphorical pitchfork up your arse!

I understand the reluctance regarding the suggestion of exercising to help with fibromyalgia because I had to stifle the urge to right-hook the first doctor who suggested it to me, but I can verify that exercise can reduce pain. Almost five months on – I’m still exercising as much as I can!

It’s not a cure. I still have fibro. I haven’t been able to exercise for four days because I’m having a flare up where all my joints are painful, I’m having migraines, and I’m fatigued. Coincidentally (or not) my anxiety has crept up and I’ve been having nocturnal panic attacks again. See, this is the connection between stress and fibro.

The other annoying aspect of fibro-group life is that people think that every single thing that goes wrong with their bodies is down to fibro..

*graphic image of a yellow toenail*

“Is this fibro?”

No. It’s a fungal infection.

*graphic zoomed in shot of a zit*

“Woke up with this spot on my face. Is it fibro? “

It’s a zit mate.

‘The binmen didn’t empty my bin this week. Is it fibro?’

Ok, I’m being ridiculous now, but you get my drift?

Then there are occasions where people will post alarming pictures of something going horribly wrong with their bodies..

*graphic picture of a swollen foot*

Woke up with a swollen foot. Any ideas what this is?

I don’t know cocker, but ya foot’s five sizes bigger than the other one, and it’s purple. Just my thoughts, but maybe you’d be better off phoning your GP (or an ambulance) rather than relying on fibro ‘warriors’ triage?

The most alarming one is when people post about chest pain asking what we think it is. You don’t piss about with chest pain that’s new to you. Yes, there is a condition that is common with fibromyalgia (costochondritis) but this needs to be diagnosed by a doctor. People should not be wasting time on social media asking people what they think it is! You could be having a heart attack and people are giving it the, “Yeah, I get that all the time hun – Costochondritis. Take some Ibuprofen. Be fine x.”

Thankfully, the majority of people will urge the group member to seek urgent medical help! (the one with the chest pain, obvs)

To be fair, I’ve had health anxiety in the past, and it’s likely that a lot of people in the fibro groups have it – which is why they’re constantly melting down over trivial stuff. I get it. I’ve been there, and it’s not funny at the time. But I can see the humour in it now as I look back – like the amount of times doctors have probed my arse because I was, like, totally convinced I had bowel cancer. My poor bum-hole has had more fingers up it than Sooty and all they ever found were some piles and an otherwise fabulous looking colon! I got my knickers in a right old twist for sure, but it was a valuable lesson to learn that anxiety can take us to some dark places if we allow it to.

Speaking of humour..

There are those who frown on humorous fibromyalgia posts declaring them ‘disrespectful’ to fibro sufferers?

Laughter has been scientifically proved to be good for us, so up yours, cockers!

Humour can be found in most situations. Granted, there are some things which can never, ever be funny, but fibromyalgia isn’t one of them. Using humour lightens up the situation. Most importantly, it takes away fear which in turns reduces stress, and stress makes pain worse.

It’s ok to have bad days where we just say, ‘You know what? Positivity can do one today. I need to wallow in my pit and binge-watch Midsomer Murders.’ I think it’s healthier to let some crap out now and then. All I ask is that people think before they post that negative comment because the person behind the success story has had to work their arse off to get there, and why the hell shouldn’t they be proud of themselves? Sure, I can understand how a success story can amplify our own misery if we are in a bad place and hope seems so far away, but for other people it will mean hope and could be the catalyst which changes their lives!

Let Autistic Soul tell you a little story…

Anybody who has really read this blog will know that I had a mental breakdown, and I do mean a breakdown.

My brain didn’t work.

My body didn’t work.

I was overrun with stress hormones.

I thought I would never get better!!

But.

I read EVERYTHING I could on anxiety.

I watched videos.

I listened to podcasts.

I dusted off my Claire Weekes books.

I joined online anxiety groups.

As is the way of most autistics, I had to understand what was happening to me!

Do you know what gave me the most comfort at 3am in the morning?

It wasn’t ‘Bob from Birmingham’ who was up at the same time as me and totally going off on one about the unfairness of his lot..

No.

I empathised with Bob, but it was the success stories which kept me from throwing myself over the nearest cliff because in those stories came hope.

Here were people who had been every bit as ill as me, or worse, and they’d recovered, and were sharing how they did it. They didn’t just sit back and give up. They tried everything until something worked. They kept falling down, and they kept getting back up again. This is what kept me going along. We will find comfort in negativity that matches our own, for sure, but that won’t make us better. That just keeps us where we are.

As an experiment to myself, yesterday I made about a dozen positive comments re things to try to alleviate anxiety (abdominal breathing) and how exercise has improved my fibro pain, and not a single comment was responded to.

We’re talking serious tumbleweed!

Could it be that some people have been ill for so long that there is comfort in familiarity?

Could it be that some people can’t see themselves ever improving?

Could it be ignorance about how the body works and not being able to separate what is fibro pain and what is down to lack of activity?

I am genuinely asking these questions because I don’t know why positivity seems to piss so many fibro-sufferers off! All I want is for everybody to be in less pain, but the bottom line is that this requires effort and the knowledge that things will worsen before they start to improve. Few things in life which are worth having come without putting some graft in, no?

If you are a fibro-sufferer, I empathise. I’m your comrade in arms, but I do NOT apologise for wanting a better life for us.

I can give you a few tips..

*WARNING CONTAINS POSITIVITY*

  • Be mindful of the type of fibromyalgia groups you join and leave any which block or censor positivity.
  • Understand that your body is a machine and all machines will eventually stop working when they sit around gathering dust!
  • It’s more than ok to vent and to allow ourselves to feel shit at times. We’re human.
  • Research fibromyalgia. Research the effects of exercise on pain. Research the effects of stress on fibromyalgia, and trawling through numerous negative social media posts will ramp your stress levels up which in turn will worsen your pain.
  • Don’t be disheartened when what works for someone else doesn’t work for you. Fibro is a complex condition. Keep trying. You will get there.
  • Though fibromyalgia can be very unfunny at times, try to see the funny side when you can. Use humour as a tool in your armoury because laughter releases the good hormones which bring down the pain levels and inflammation.

Speaking of humour (again) I’ll end this post with ‘Derek’s’ Amazon review which I will link to. This is doing the rounds on social media, and rightly so because it’s hilarious!

Read it and let those little drops of wee dampen your underwear!

The Horror at 30’000 feet

You’re welcome. 😉

Embracing the Weird

Definition of Weird: deviating from the customary:
bizarre, cranky, curious, eccentric, erratic, freakish, idiosyncratic, … (naturally)

Causing puzzlement; perplexing: (my neurotypical husband would testify to this)

Until a few years ago, I fought my weirdness. I hid the weird. I supressed the weird.

Where’s your will to be weird? Jim Morrison

Hidden under the desperate need to be invisible, Jim.

Fighting my weirdness was like trying to keep afloat on a punctured lifeboat where drowning was inevitable – it was just a question of time. This was me for forty plus years – floundering against the unrelenting current of neurotypical bullshit until one day I went under the surface and that, my friends, is an analogy for nervous breakdown.

A year later, a clinical psychologist informed me that my ‘weirdness’ had a name – Autism. This person, in effect, threw me a lifeline, and I’ve been making my way back to shore ever since.

There’s a whole category of people who miss out by not allowing themselves to be weird enough. Alain De Botton

Some autistic people reject the word ‘weird’ and that’s fine. It’s about perception and personal preference, but I prefer to see ‘weird’ as a positive.

Also, where people see weirdness – I see creativity.

“Weirdism is definitely the cornerstone of many an artist’s career.” E A Bucchianeri

Take Andy Warhol. ‘Weird’ was a word that was often used where he was concerned, but the man was creative and made a fortune out of thinking outside of the box. At the time of his death his net worth was equal to $220 million dollars!

Newsflash: He was most likely autistic!

Warhol’s behavioural traits strongly suggest autism. His social and communication issues, obsessions and repetitive style totally do it for me. I mean, it’s possible that some of it was a persona to make him to stand out from the crowd, and maybe he was just really shit at interviews, but given that he thoroughly examined packages of underwear before buying 28 pairs of the same pair – I’m confident in the theory that he probably was autistic.

For fans of Warhol, however, the suggestion that their hero’s view of the world was impaired by a mental disorder is upsetting. It undermines the idea that he knowingly shaped our understanding of pop art. ~ Vanessa Thorpe (The Guardian – Was autism the secret of Warhol’s art)

Mental disorder? I thought we were talking about autism?

Does this mean that Gary Numan fans binned their records when he ‘came out’ as autistic because it, like, totally ruined their enjoyment of “Music For Chameleons” – if Alan Partridge’s air guitar-ing hadn’t already, that is. Because Gazza had already been told he probably had Aspergers when he was 15, and it was fairy obvious that he wasn’t your average 80s pop star!

Coincidentally, “Are Friends Electric?” was the first record I ever bought- which I reckon is apt- and not just because Gary is autistic, but because most of my ‘friends’ live in my computer which makes them ‘electric’ – kind of.

While we’re on the subject of singers..

Susan Boyle was formally diagnosed in 2012. She’s one of us, and she played an absolute blinder in her audition for Britain’s Got Talent, or Britain’s Quick to Judge, as it was known back then..

Modern society is too quick to judge people on their appearances. … There is not much you can do about it; it is the way they think; it is the way they are. But maybe this could teach them a lesson, or set an example. – The Washington Post

They call it a ‘parable’ of modern times. I call it one in the balls for society because, alongside Susan’s phenomenal voice, was the sound of a few million mouths hitting the floor..

I dreamed a dream in time gone by (THUD THUD THUD THUD times a few million) when hope was high and life worth living…

Susan was the favourite to win but dance troupe Diversity threw a small teenager into the air and that was that, mate. No matter, the show made Susan famous anyway and she’s still keeping in real in her ex-council four-bedroomed house – which makes me love her even more!

People have mistaken Susan’s meltdowns (caused by severe anxiety) for diva behaviour, but this lady likes a toastie before a performance and isn’t arsed about what her dressing room looks like! You want to see diva? Try Mariah Carey!

Miss Boyle also has a really great sense of humour…

“Knowing my luck I’d go out on a date and you’d find my limbs scattered around various Blackburn dustbins!”

That’s my kind of humour – dark, but funny.

Personally, I wish Susan all the very best and I’m proud of her for being her authentic self.

If people ridicule us for being ‘weird’, it’s because they’re uneducated about autism, misinformed or just boring as fuck, and instead of taking offence I suggest we take it as a compliment and reply with: ‘Thank you so much!’ and smile at them because it will freak them out, and after all, being freaky is part of the definition of weird, no?

If you’re autistic that makes you I in 100, and if people can’t deal with that – it’s their problem.

Be weird.

Be you.

Weird people are the best people.

Me Versus Mother Nature

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Mother Nature has pulled out ALL the stops to make me old before my time.

She’s given me an early menopause, arthritis (basically everywhere) a mental breakdown and fibromyalgia.

I was ageing faster than “Nicholas Flamel” after his Elixir of Life had run out!

Physical and mental ill-health put ten years on me, at least. My skin was an unhealthy shade of pale and, as noted by my rheumatologist, it was extremely dry, and dry mature skin is very ageing.

While being more active has improved my skin because of improved circulation – it’s only part of what needs to be done. I have to put back what Mother Nature has stolen from me – which is my collagen.

Collagen = Youthfulness.

Full disclosure: I’ve been using anti-ageing creams for years but I’ve replaced them  with Vitamin C (and hyaluronic acid), a natural face-scrub, inexpensive barrier cream plus sesame oil.

Sesame oil? Are you nuts!

Yes, and yes.

I’ll tell you more about sesame oil in a bit!

Morning Routine

Cleanse (oil based cleanser)

A few drops of Hyaluronic Acid/Vitamin C

Barrier cream (sunblock if I’m going out in the sun)

Night-time Routine

Cleanse

A few drops of Hyaluronic Acid/Vitamin C

Sesame oil massaged into face, neck and chest.

I exfoliate at least twice a week, and when I have a bath or shower I massage sesame oil into my body – including my feet and elbows!

Benefits of Sesame Oil

  • High in antioxidants
  • Good for heart health
  • Good for the skin (contains Vit E)
  • Could help with arthritis
  • Could improve hair health
  • Anti-inflammatory properties

I’m spending a fraction of what I used to spend (soz L’Oréal et al) and the results speak for themselves because my skin looks ten years younger than when I started, and I have fewer lines. Obviously this an anonymous blog so you’ll just have to take my word for it, innit?

NOTE: If you fancy trying the sesame oil, you’ll need to do a patch test to make sure it won’t irritate your skin to make sure you don’t puff up and end up in A&E innit?

Vitamin C with Hyaluronic Acid

Vitamin C brightens, promotes collagen production, reduces wrinkles and provides antioxidants while the Hyaluronic Acid claims to hydrate and ‘plumps’ the skin. For me, this is a valuable part of my skincare routine, but it is used in conjunction with H2o hydration!

Good skin (or better skin) is the key to looking younger. You can dress how you want cockers, but if ya face looks like Keith Richards then you’re going to look older than your years!

I’m no expert on beauty but I can share what works for me, so here are my tips for better mature skin.

Autistic Soul’s Tips For Better Skin

  • HYDRATE. HYDRATE. HYDRATE.
  • Drink less caffeine. (it will dehydrate you)
  • Avoid soft drinks.
  • Avoid basking in the sun like a fucking seal.
  • QUIT SMOKING!!!
  • Drink in moderation, but drink water in-between. (best case scenario – no alcohol, but I prefer to keep it real on this blog, so, yeah – moderation)
  • Don’t presume that expensive will work.
  • Exercise
  • Eat plenty of fruit and veg (IBS allowing)
  • Sugar is to skin what Jaws was to swimmers!
  • Consume omega-3 fatty acids (found in oily fish) flaxseed and monounsaturated fats, which you can find in walnuts, avocados and olive oil.

Do your research. Read what other people have to say about products, but be mindful of fake or biased reviews. Some people will wax lyrical about a glittery turd if they’ve received it for free! Also, what works for one person won’t necessarily work for us because we all have different skin, sensitivities, and preferences when it comes to how something feels and smells. What smells ‘heavenly’ on ‘Andreaaaaaa’ might smell like cat piss on us, you get me?

Buy the smallest amount you can and be prepared to bin it, or give it away.

Or maybe go into a department store and have the ladies fawn over you with their testers? I did this with foundation, simply because I was sick of buying shades which made me look like an Oompa Loompa. In the end, I frog-marched myself into Debenhams and had a lady tell me the exact shade for my skin – one for summer and one for winter. That said, I can’t go out in the sun, so it’s winter shade all the way for me!

Another word of caution about buying skin-care products and make-up online is if an expensive brand is like, silly cheap, then it’s probably fake or you’re buying a tester.

Personally, I’m leaning more towards Ayurvedic skin remedies which have worked for centuries rather than something that has an ingredients list a mile long. General rule of thumb? The longer the list – the more unnatural the product!

If you’ve read this post, and you’re thinking, I really can’t be arsed with all this, cocker, that’s fine. If you only choose to drink more water, it will make a difference! You’ll piss more so don’t drink after 6pm. But when your wee is nice and pale – you’re hydrated. Yay!

As for me, I’m on a roll to make sure that I feel (and look) the best that I can be as I enter into my fifties. It’s me taking back control. It’s self-confidence. It’s remembering that I have it a lot easier than most of my female ancestors – who were mostly dead by 40 due to working themselves into early graves. That, and no National Health Service, obvs.

My mother departed this Earth aged 72 years old, but she made the very best of herself right until the end. Ok, make that the day before the end because she died wearing her nightie and no make-up. This was the worst death scenario my mother could have imagined, but that’s Mother Nature for you – she gets off on shit like this. It’s what she does.

My grandmother went one better. She had Mum putting rollers in her hair the night before she died. She’d been poorly for two weeks, but it was like she could see Mother Nature and The Big D in the corner of the room and was like: “I see you there motherfuckas, but I’ll go when I’m ready, and with my hair nicely curled thank you very much!”

Nan died peacefully the next morning – her hair perfectly curled. According to my mother, she looked 30 years younger. That’s some hardcore anti-ageing right there! However, it’s drastic, so I won’t be recommending death as a tip!

I can’t help but smile that my grandmother got her hair done for the journey to the next world. That was so her. How to check out from this planet with one finger in the air, eh Nan?

With women like this as examples, how can I possibly let the side down?

You can’t help getting older, but you don’t have to get old ~ George Burns

Confessions of a Cleaner

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Once upon a time I was a domestic engineer – which is the technical term for a cleaner.

I was initially employed as a cleaner/caretaker in a children’s nursery, but this post is mostly about my other cleaning job where I was employed by a cleaning company who tasked me with the job of cleaning a warehouse which included offices, a canteen, and the toilets..

I was issued with a tabard – which is the standard uniform worn by workers in the catering, cleaning and healthcare industries. I also had a large sign made up so the menfolk would know when the toilets were out of bounds because the last place I wanted was to be anywhere near those cubicles when ‘Bob’ from packing was birthing the result of fourteen pints of beer and a chicken jalfrezi, you get me?

Most people obeyed the sign – thankfully – and this gave me time to work my magic with the mop and disinfectant. But there’s only so much you can do in the gent’s loos and I was employed as a cleaner, not a magician!

Cleaning the gent’s toilets was the first task of my shift because I wanted to get it over with as soon as humanely possible, so arming myself with two cans of “Pine Fresh”, I would walk up to the toilet door – take a huuuuuuuuuuuuuuuuuuge breath in, and kick the door open with one purposeful kick of my size 4 comfortable workwear shoe..

“ANYBODY IN HERE”?

Occasionally someone would fart as way of reply so I’d go and flick a duster around somewhere until I heard the toilet door open and close, then I’d stick the “DO NOT ENTER, CLEANING IN PROGRESS” sign on the door and wade in blasting both cans of air freshener simultaneously like Lara Croft – if you can imagine Lara Croft in a tabard?

This ritual was necessary for me to be able to work in that CESSPIT without falling into a coma, and if any of you are reading this and thinking that I’m in any way elaborating? Trust me, I’m not.

Removing that classy tabloid, The Sun (usually left open at page 3) or the Daily Sport, (open at any page), from at least one of the cubicles was a daily occurrence, and toilet roll was usually strewn over the floor along with chocolate wrappers and half-eaten pies..

Yes PIES!!!

Who, THE FUCK, eats a PIE while they’re having a SHIT!!

On one occasion I prodded open a cubical door with the end of my mop to see a vending machine cup on the floor and next to it was a large breasted Page 3 lady pouting at me..

WARNING!! If the above offends you, you might want to skip the next bit!

On closer inspection, the cup was a third full of a transparent liquid (not water) and what looked to be a pubic hair floating in it. Now, I’ve seen some sinister looking stuff drop out of vending machines cockers, but never that!

I was well aware that men ‘relieve’ themselves in toilet cubicles – I mean, whatever floats ya boat, eh? – but seeing the evidence for myself had me wishing that I was blind – albeit temporarily.

Cleaning up reproductive man-fluid? Not in the job description!

Then there was the time when I saw more than I bargained for..

The ‘KEEP OUT, I’M CLEANING’ sign was on the toilet door, and I was in the process of mopping up the river of piss on the floor when one of the lads came in and his ‘equipment’ was out and he was urinating before I had chance to leave!

Bit of a dilemma to find oneself in, but I stood my ground because the sign was on the door and rules is bloody rules! That said, I was always happy to leave when blokes asked if they could use the loo, but this motherfunker just went for it! So I leaned on my mop and enquired as to whether he’d seen the massive sign on the door at all? To which the cheeky bugger replied, “Yeah. I don’t mind if you don’t love”

If his motive was to embarrass me, it was never going to work because I’m not that kind of female. I was more envious that I’m unable to pee standing up – something that’s always peeved me!

Pee. Peeved. Too many pees!

One day I came across some freshly scratched-in graffiti which said “I’d shag the cleaner” and being immortalised on toilet walls – whatever the sentiment of the graffiti – is the cleaner’s equivalent of being inducted into the rock and roll hall of fame, only there’s no red carpet – not one that wouldn’t be soaked in pee anyway!

My career in cleaning has given me a lot of respect for anybody who does an unpleasant job, and screw the snobmongers who look down on cleaners – believing them to be the lowest of the low..

Reality check..

Cleaners are frontline workers, defenders of our health, and replenishers of toilet roll  – even though there never seems to be any when I need it!

Minimum wage for doing a job of this importance? Do me a favour!

I’ve given you an insight into the life of a cleaner, so if you see a traumatised looking one slowly dragging their cleaning station away from the direction of the public loos – show them a little compassion because they’ve probably just spent an hour coaxing a manky sanitary towel out of the u-bend because those sanitary hygiene bins to the side of the toilet are apparently invisible. Or they’ve witnessed something nasty in the gent’s toilets and need some time to gather their senses. The poor sods are probably suffering some form of PTSD on account of the horrors they’ve encountered within those cubicles because human depravity knows no bounds when it comes to public conveniences – trust me!

As I mentioned earlier, I’ve also cleaned in a children’s nursery, but nobody minds cleaning up after three year olds, especially when you’re featured on the annual tea-towel – which is the school cleaner’s equivalent of being inducted into the Rock and Roll Hall of Fame!

You’ve already done that one, mate.

Whatever.

Every year a child would be tasked with drawing the picture of me to appear on the tea-towel, and naturally I was always holding a mop – even though my main job was “caretaker”. Why was I never drawn with a tool box? Or painting the fence? Or having a mental breakdown because the alarm was going off?

WHY!!

And then there was the thing where my arms were poking out of my head like television aerials – which was cute and unnerving in equal measure!

I looked forward to those tea towels. They made me smile. And it really was a pleasure to clean up after little ones whilst being surrounded by pasta pictures, rainbows and mobiles which totally fucked with the sensors on the alarm system!! But cynical bugger me can’t help but wonder how many of those angelic little boys grew up to be skanky bastards who eat pies on the toilet!!!

This post was originally written many years ago on a different blog, in a different life. It was written at the request of a very special person who sadly took his own life last year.

This post is dedicated to him.

Confessions of an Autistic Human: Communication

NT person: “The washer is broken and I feel exhausted.

Me: Yeah, my washer is on it’s way out too. It’s making a weird noise and there’s a funny smell – like’s something’s burning out? This happened before (different washer) and it turned out to be the brushes. I’ve had this one for 8 years now whereas I had my mum’s old Servis one and that lasted for 30 years! They don’t make them like that anymore do they? And I know what you mean about feeling exhausted because I’ve felt that way for almost 10 years now. I get loads of symptoms like pain, constipation, chills, and feeling dizzy. Lots of trips to see the doctor and hospital tests, including a colonoscopy where they shoved a camera up my bum, and I had to wear a funny gown which exposed my arse. They finally diagnosed it as fibromyalgia. Have you been to the doctors about the exhaustion?

Apparently, the response the average NT is looking for is, “Oh, I’m sorry to hear that!’.

What they get is me talking about my own experiences in a very un-filtered way which will inevitably always come back to my colon..

Why do you always have to make it about you?

I guess, on the face of it, it does look that way, but what I’m actually doing is trying to connect with people in the only way I know how because I’m useless at small talk. Not only is it a chore trying to think of the words to say, but talking about trivial stuff is like nibbling on a Ryvita when I could be oesophagus deep in a roast beef dinner with all the trimmings – except sprouts which give me shocking flatulence..

See, it’s the colon thing again!

My husband (who suffers from a raging case of neurotypicalism) struggles to understand my need to know ALL there is to know about things that interest me. He watches a film. He listens to a song. It’s a one dimensional thing. For me, it’s a multi-dimensional experience combined with an almost pathological need to know everything there is to know about a particular film or piece of music. He doesn’t understand me, and it’s hard to walk out of a cinema and not be able to geek out with a like-minded soul, you know?

Speaking of my husband..

I think I do his head in. No, I know I do because he’s told me – which is fine because I do my own head in at times. I baffle him. I can do past, current and future in one sentence, and about different subjects. To paraphrase, I throw in more curve balls than Candy Cummings – who you’d imagine is a porn star – but he was actually a 19th century baseball player!

The difference is that most autistics I know are the same as me if you’re asking them a question verbally or on the internet – you get a lot of info for your proverbial money. Generally, when I ask an NT, I get one (or few) liner responses. Now, I’ve tried this method and, bizarrely, it takes me longer to knock out a one-liner than it does to just go with my autistic flow. But I have discovered that one-liners come into their own in certain situations – such as when posting a funny picture. In this situation, it needs to be short and snappy with as few words as possible because it’s the image that needs to do the talking..

I could learn a lot from my eldest son here because he’s perfected this, and it’s hilarious. Interestingly, he’s not autistic, but my middle son (who I suspect is autistic) is more like me for saying in 10000 characters what could be said in 140. As for my diagnosed autistic dude – well he can literally steer any conversation back to Pokemon, and I do mean, any conversation! And he does it in surprisingly few moves. It’s his thing – his constant in this confusing world.

How I communicate used to bother me. It’s like I would put in so much effort to answer a question and the other person would give me a ‘Thanks’ or ignore me altogether and paranoia would kick in, especially when said person would answer everybody else but me. Then I discovered I’m autistic and that discovery led me to a world of other over-sharers, and it’s an absolute joy to have responses that match my own for word count!

The Greek meaning of autism is autos (not a car magazine) which means ‘self’, and in a way is correct, except that it also implies selfishness, and I think that a lot of us talk about ourselves and our experiences in order to connect with others. This involves empathy – you know – that which autistics lack? It’s just that we do it in about 50 paragraphs, whereas your average NT does it in one line – “Totally get this“. It does the job. It says, this has happened to me, or something similar, but the urge to start tapping away on the keyboard like some deranged lunatic overcomes me, and before I know it I’ve hit the post button..

And there it is..

..one MASSIVE paragraph amongst hundreds of one-liners.

I know I over-share, and I talk about subjects that most people won’t touch – like colons – but that’s me. It’s who I am. And if we talked about our colons and bums a bit more, then maybe fewer people would die of bowel cancer, no?

Generally, I have a lot less to say verbally, but give me a keyboard and I have plenty to say because there is a barrier between me and everybody else. I have time to choose my words and I can change them if they don’t work or I’ve used the wrong words. I can’t edit myself verbally – once the words are out there there’s nothing I can do, and it’s often the case that I don’t speak at all because it’s easier.

I don’t stumble over my words on here. If my brain freezes up mid-sentence, who is to know except me? I get to re-read what I’ve written before I put it out there.

Another beauty of blogging is that I hate writing by hand because it hurts and my writing isn’t the neatest. Sometimes it looks like a spider rolled in ink and breakdanced on the paper! My writing slants unpredictably, and when it looked this up it means: An erratic slant: Usually means a lack of flexibility.

Well that’s another autistic mystery cleared up, eh cockers!

“Not everyone is always going to like you. What impresses one person may turn another away. To thine own self be true.”
― Susan C. Young

Negative Thinking

There’s a pattern with me where my ‘mind shit’ builds up to an unmanageable level and I get me some therapy. I go. I vent. I unleash. The shit gets squashed back down again for a while. It’s like Christmas when the bins are full and you have to stamp everything down. In fact, a ‘bin’ makes an good analogy for my mind as they only seems to be crap in there!

Anyhoo, my bin’s almost full and this puts me at risk of ‘falling down the rabbit hole’ – which is a metaphor for something that transports a person into a really wonderful (or really shit state) and in my case it’s a really shit one.

Yesterday I was so overwhelmed by negativity that I had an episode of ‘situational mutism’. I hid myself away upstairs. I comfort ate. I wanted to cry – only the tears wouldn’t come. The negativity ran riot in my mind and I couldn’t do anything but lie there and let the stress hormones run feral around my body..

I remained in this state for a few hours, then the thought popped into my head to put YouTube on, and with no intervention by me, there, tucked between my over-50s exercise videos, was the ‘suggestion’ of an Eckhart Tolle video about negative thinking!

Synchronicity or what, cockers!

Say what?

Synchronicity: describes the simultaneous occurrence of events (or coincidences) which apparently have no clear cause, but are deeply meaningful.

According to Eckhart, the best way to overcome negative thinking is to live in the present moment. It’s a big ask, truth be told, because I can generally be found in the past or in the future, and neither are nice places to be, but Eckhart knows all about negative thinking and what it’s like to be a deeply miserable human being because he was one until he woke up one morning and felt less shit..

“I opened my eyes. The first light of dawn was filtering through the curtains. Without any thought, I felt, I knew, that there is infinitely more to light than we realize. That soft luminosity filtering through the curtains was love itself. Tears came into my eyes. I got up and walked around the room. I recognized the room, and yet I knew that I had never truly seen it before. Everything was fresh and pristine, as if it had just come into existence. I picked up things, a pencil, an empty bottle, marvelling at the beauty and aliveness of it all.”

Beautiful huh? Whereas, I woke up this morning to a shade of grey (and not in a sexual way) and I had to flick a dead fly off the windowsill..

“As you grow up, you form a mental image of who you are based on your personal and cultural conditioning. We may call this phantom self the ‘ego’. It consists of mind activity and can only be kept going through constant thinking. The term ego means different things to different people, but when I use it here it means a false self, created by unconscious identification with the mind.”

And here lies the problem because I grew up being bullied and a whole load of other negative things which wrecked havoc on my confidence and self-esteem. I also grew up being loved by my family, but my brain has this thing going on where it only focuses on the negative memories, and I think it might be the case that I don’t consider myself worthy of happiness?

There are so many thoughts and memories that make me unhappy. They’re like limpets on rocks – an absolute bugger to prise off. But I know that deep down in my psyche is the pre-school me – and that version of me experienced what Eckhart was talking about with his epiphany – every single day.

She’s there, buried underneath all the crap. The poor fucker can’t breathe!! Help her, Autistic Soul, help her!!

My heart wants to be happy. How do I know? Well, our bodies thrive with happiness but wither with sadness. This is scientific stuff! So doesn’t it make sense to try and find my happy? And hopefully before I die?

So what makes me happy?

  • My kids (even if they’re shit at replying to my messages)
  • My husband (when he’s not being an insufferable neurotypical arsehole)
  • My lovable (and psychotic) lurcher
  • Music (the soundtrack of life)
  • Books (bury me under a pile of books!)
  • Gardening (when the pollen is low enough to get out there, like)
  • The sea (the way those waves roll in an out..)
  • My home (sanctuary)
  • Binge watching box-sets (currently on Brassic)

There are things we can do to combat anxiety and depression and bring ourselves a bit of happy. Yes, I know how hard it is to see the light when your mind is full of crap, but the potential is there.

Exercising ~ Even a short walk gets those endorphins flowing. I generally feel better after I’ve been for a walk – especially when there’s nobody else about.

Mindfulness ~ Bringing ourselves into the present by noticing the world around us instead of focusing on how shit we feel. I won’t pretend this is easy, especially with being autistic, because the world can be a scary place. But there is beauty out there too!

Doing Something New ~ Trying out something different, like photography. Anything that takes us out of ourselves – even it’s for five minutes.

Goals ~ Having something to aim for in each day, even if it’s to get that bastard big pile of ironing done!

Therapy ~ Go unleash your shit onto somebody who gets paid to listen. Fill your boots. Use ALL their tissues. Or type/write that shit down – using ALL THE SWEAR WORDS!!

Sense of Purpose ~ We all have a place in this world. We all need a sense of purpose to give our lives meaning. Mine is to be a mother, and the best one I can be. That’s my purpose. It always has been.

Focus on the Good Bits ~ Life can be EPICALLY CRAP, but try and focus on the better bits, no matter how small.

We may not have had any choice in being here. After all, we are the result of our parents swapping bodily fluids *retches* and we happened to be the best swimmers, but seeing as we are here we might as well try and make the best of our time because in the great scheme of things, it’s very brief. Like, blink and you’re dead – brief.

Today I woke up to the same old feeling of not having slept very well. I didn’t have my ‘Eckhart moment’, but I did get a lick from the lurcher in thanks for letting her outside for a piss. Now she’s fast asleep on her doggy-bed chasing imaginary rabbits and I realise that she is something to be thankful for because here is a friend who’s never made me feel bad about myself. I mean, she’d probably prostitute herself to anybody with a box of Bonios, but I like to pretend I have her undying loyalty.

So the antidote to negative thinking is to be in the present?

So for the next minute I will be ‘present‘.
Visual

I noticed that the sun has came out – changing the colour of the conservatory roof from grey to blue.
Auditory

I heard the ticking of the clock, the tinnitus in my left ear, electricity, the whirring of the fridge and freezer, and the dog’s breathing which was back to normal since she was no longer rampaging after rabbits..
Olfactory

Slightly more difficult as it’s hay fever season and my nose gets blocked, but there was no mistaking the odious smell that escaped from the Lurcher’s arse!
Taste

I tasted blood in my mouth – which means that I’m probably low on Vit D again.

That and coffee.
Touch

I noticed that my skin felt dry (probably the new soap, or age) and that my coffee was lukewarm.

Alright then Eckhart. Today I will try to be present as much as I possibly can in the hopes that it will make some room in the ‘bin’ that’s my mind.

It certainly won’t hurt to try, right?

“Happiness can be found even in the darkest of times, if one only remembers to turn on the light.” ~ Albus Dumbledore

Autism and Stimming

Stimming is self-stimulatory behaviour. It’s repetition of movement, sound or movement with objects – done for relief and pleasure.

Simplified: Stimming calms or it stimulates.

Everybody stims, but non-autistic people have more socially acceptable stims and are more able to control them – except for nose-picking. Some NTs pick their noses for the practical reason of snot removal, but others do it out of boredom, and if you want to see nose-picking in action – go drive up and down the motorway for half-an-hour!

Full disclosure: Nose-picking is a stim for me – especially after a few hours breathing in air-con which dries everything up. But it’s a private stim – as opposed to that bloke in a white van the other day who was knuckles deep up his nose and seemingly oblivious that the world was watching him trawl his nostrils!

Mate, BIG van = BIG windows = EVERYBODY CAN SEE YOU!

There are various types of stimming (the ones in bold apply, or have applied, to me)

Tactile

  • Skin rubbing/picking
  • Teeth grinding
  • Flicking fingers/nails (drives my son nuts)
  • Biting fingernails
  • Stroking stuff

Visual

  • Staring at objects, like wind turbines (when they’re on, obvs)
  • Repetitive blinking or flicking lights off and on
  • Hand flapping
  • Lining up objects 

Auditory

  • Sounds such as humming (my son is a hummer) or shrieking
  • Tapping
  • Finger snapping
  • Repetitive speech (songs/movie lines) (this can be out loud or in one’s head)
  • Playing The Cure’s Disintegration album on repeat for 6 hours

Vestibular

  • Spinning 
  • Jumping
  • Rocking
  • Pacing

Olfactory

  • Sniffing (people, things, animals, self)
  • Tasting

I’ve had forty plus years of hiding/suppressing behaviour, but one of the great things about awareness is that all those things I did (but never understood why) have names. For example: stimming.

It started when I was a very small child where I would spin myself around until ‘the butterflies danced in my stomach’. Then came infants school where there were boxes upon boxes of colourful (and tactile) objects that I liked to touch or manipulate in my hand. Doing this soothed my anxious mind – albeit temporarily.

Then came the glue..

You’re probably reading this and thinking, ‘Glue? Christ!, she’s a glue sniffer!’

Rest assured. I wasn’t (and have never been) a glue sniffer.

I may, however, have had a brief dalliance with Tippex in my high school days..

The first time I used glue, the stickiness made me anxious because I HATE the feel of sticky-stuff on my fingers and I had communication issues so I wasn’t able to ask if I could go and wash my hands. So, the palpitations were just about to kick in when the glue dried and I discovered that peeling it off my fingers was quite possibly the best thing to happen to me since Enid Blyton!

After glue, I discovered candle wax, and we used a lot of candles in those days because of the power cuts!

Finally, I discovered that picking spots was THE BEST THING, EVER!

When I was 21 I got chicken pox. Can you imagine the joy? People kept saying to me: ‘WHATEVER YOU DO, DON’T PICK THE SCABS!’ – which is like telling Mary Berry to quit baking and become a refuse collector!

OF COURSE I PICKED THE SCABS!!

I especially loved the scabs on my head because I could pull them ever-so-slowly through my hair. (omfg intense joy!!)

I’ve always picked my spots. And other people’s. Feeling that satisfying *pop* as zit matter is released at high velocity? Welcome to the pleasure dome, cockers!

However, I do try to save the zit-slaying/ skin-picking stims for home because it’s socially unacceptable to be pecking at yourself in public like a demented pigeon, no?

Even so, I, erm, occasionally I forget myself. (oops)

My husband tells me off for picking my skin saying it’s “well ming” but seeing as the guy flosses his arse-crack with his underpants, I really don’t think he’s in any position to cast aspersions!!

Bottom line: stimming helps me to focus and it calms me. It has a purpose. Most importantly, it’s part of the armoury I need to survive in this world.

To stim is to breathe. Honour the stim ~ Leah Kelly

 

 

We’re Not All A Little 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 trivialise the problems that we face on a daily basis.

When I talk about my difficulties, 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 are not autistic sometimes. You’re either autistic, or you’re not!

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

Yes, we are, 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 something that can be overcome, like shyness. There are people who claim there’s a cure for autism, and some parents of autistic children genuinely believe that pumping bleach up their child’s bottom will ‘rid them of their autism’ – only it won’t – because there’s no cure for autism aside a brain transplant. What it will do is cause serious health problems.

If those parents were to give themselves a bleach enema, would it cure them of their imbecility? Probably not, but I say we do it anyway!

People 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 we die.

If I’d only ever had the occasional off day, maybe I wouldn’t be bogged down with mental illness and fibromyalgia?

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.

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? (one for the Beach Boy fans) Alas , the author of that particular tweet doesn’t know that The Beach Boys are one of the most critically acclaimed, successful and influential bands of all time – obviously, the tw@tspanner wouldn’t know harmonising if it bit them on the arse! God only knows what kind of crap they listen to!

Another one?

“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.”

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

Excuse me?

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. (as ya do)

One appeared to be auditioning for BGT. (it’s a no from me, cocker)

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

Then, in walks some good-looking lad and they unanimously start screeching like bats.

The young man didn’t appear to 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 windows..

The entire thing was cringe-worthy. Those young ladies epitomised everything that irritates me about neurotypical female humans! Anyway, I typed ‘neurotypical screeching’ into a search engine and the top result was this:

Non-autistic people getting worked up over something unimportant.

Granted, it’s from Urban Dictionary, but I really hope it’s an autie demonstrating that autistic people bloody well can do sarcasm!  Aside this, there’s nothing to suggest that ‘neurotypical screeching’ is a thing. However, type in ‘autistic screeching’ and prepare to do some serious scrolling because it goes on, and on, and on.

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

If you’ve given birth, you might understand the resentment one feels when husbands/partners attempt to compare something trivial (like a stubbed toe) with the pain of heaving an angry little human out of your vagina? You want to bludgeon them to death with the nearest heavy implement, right? Well, it’s like that..

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 the crap kicked out of them for it? Or experience the mental illness that comes with living with the fight or flight response jammed on? Or the rejections in the workplace? Or the chronic health conditions that are the result of being constantly blasted with stress hormones. 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?

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

To put yourself into my size 4s you have to have known fear, pain, a shit load of 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 need to have lived with anxiety since birth. Been bullied. Had eating disorders, OCD, and a string of failed friendships and relationships. Throw in a few bouts of clinical depression until you completely and utterly lose your shit in your mid-forties and then succumb to chronic illness which makes trying to exist in this world an even bigger ask than ever before!

Many autistic people have a story like mine – especially those who were diagnosed late in life. Some have much worse tales to tell. And let’s not forget those troubled souls who are no longer around to tell their stories because their lives were ended at their own hands or by those whose duty it was to care for them.

The way I see it is that the problem is not being autistic per se – it’s more to do with how the world perceives us, and trying to survive in a world that isn’t autism-friendly. If people were kinder, and the world was more autistic-user-friendly, I think we could thrive. But life’s not like that. People reject what they don’t understand and we’re expected to adapt in order to survive in this world – except that a big part of being autistic is the inability to adapt.

There are half-hearted efforts to include autistics, but one hour a month in supermarkets doesn’t cut it. It’s a tick in a box, that’s all. So much more needs to change if we are to save autistic lives, and the main thing which needs to change is the attitude towards autism which should start with the understanding that autism is a neurological difference – not something we choose to be.

Dear NT person,

I meet the criteria set out to diagnose autism – because I’m autistic.

You might experience one or two traits of autism occasionally but that doesn’t make you autistic – not even a little bit.

You are either autistic, or you’re not.

Yours sincerely, Autistic Soul

 

 

 

 

 

 

 

 

My Autistic Superpower: Memory

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It’s generally thought that ‘highly functioning’ autistic people have enhanced long-term memory, and often struggle with working memory and executive functioning.

While I physically cringe every time I hear the HFA term – this does describe me.

The Education Bit

Memory: the faculty by which the mind stores and remembers information.

A short term memory last for about 18 seconds. (less, if you’re me)

Long-term memories are stored indefinitely.

Smells, sounds and touch can provoke strong memories and are spontaneous often evoking an emotional reaction. These are called sense memories. Example: I was wearing a perfume called Sunflowers on the day my father died. It was Christmas Day and it was a gift from them. I never wore it again because the smell made me think of my lovely dad’s heart stopping in front of me – as did every subsequent Christmas Day. Ten years later I was at a funeral and a woman was wearing the perfume. I had, what I think, was a meltdown – only it involved me drinking lots of alcohol, very quickly, to try and numb the memories which were surfacing – so much so – that I can’t remember anything else from that day.

Finally, genetic memories are present at birth and are passed on through DNA. Phobias and anxiety disorders can be passed to our children via DNA. A neuroscience study showed that mice trained to avoid a smell passed their aversion on to their “grandchildren”. Fascinating shit, no?

Despite this misleading title of this post (oops, my bad and all that) autistic people don’t have superpowers. I mean, we’re all awesome in our individual ways, but when it comes to being math ‘geniuses’ or excelling in certain fields – it’s generally because we’re super-focused on what interests us.

Rainman

Around one in ten of autistic people are savant, and that’s what confuses people because Raymond Babbitt (Rainman) was savant. Rainman got people talking about autism, for sure, but the character was based on megasavant, Kim Peek, only he wasn’t autistic. Kim could do some funky shit, for sure. He retained 98% of information and could read two books at the same time – one book for each eye. His reading comprehension was such that he could probably have read Tolstoy’s War and Peace in about an hour and remembered the lot! Pretty sure it’s witchcraft, but officially it was down to him being savant.

My autistic son was number-obsessed from the age of four to about seven, then Pokémon took over, and he can literally name every damn Pokémon there is. His life is Pokémon. If there was an exam on Pokémon – he’d pass with distinction.  Thankfully, both of his older brothers speak fluent Pokémon, as do most of autistic friends at school, and his very good Pokémon obsessed neurotypical friend next door. Pokémon is his escapism. It is his coping mechanism in this confusing world, and music is mine.

He isn’t savant, cockers, he’s just obsessed with Pokémon!

I asked my eldest son to describe my music knowledge, especially the 1980s – which was the decade that I hyper-focused on..

“It’s encyclopaedic, Ma!”

Long-term memory is a double-edged sword, so to speak. On one hand I have excellent recall, but this also means that I have memories that I’d rather not have, and it’s those memories which eclipse the happier ones – because life’s crap like that.

I’m predominantly an anxious person with phases of depression – some which have been clinical. As with any form of trauma, there are triggers, and the bad memories push past everything that’s pleasant in my head. It’s like when dark clouds pass over on a sunny day. Suddenly it feels cold. Like when the Dementors in the Harry Potter movies ice everything up with their soulless kiss. It’s a physical thing. My heart rate increases and the stress hormones race around my body as sure as if the event that’s in my memory is happening now – which is a bit shit!

Short-Term Memory

The short-term memory is the one which does the work, and it’s the one which I struggle to function on a daily basis with. STM has limited storage and autistic people generally take in more information (especially sensory) than non-autistic people, so maybe it’s easy to see how we struggle with day to day life? Because it gets busy in our heads. This is why I struggled at school because my brain couldn’t handle the sensory stimuli, the educational information, and the bullying. It’s a hard enough task for any brain, but it was an impossible ask for my autistic one.

As if life isn’t hard enough; throw fibromyalgia into the mix and I have a whole new world of memory issues because, now, I struggle to hold onto my thoughts as well. I have a thought, and it’s gone..

But you’re menopausal. Menopausal women are always forgetting stuff – like where their glasses are and putting the cat in the fridge instead of the milk, yeah?

True, but this is where I lose..

… my thoughts mid-sentence.

I’m used to walking into room sand standing there looking vacant while I try to remember what I went in there for, but not being able to hold onto my thoughts, as I think them, is unnerving. However, I comfort myself that a recent brain scan, not only showed an actual brain, but one with no abnormalities that would bugger around with the memory – so I just have to note it as a fibromyalgia symptom, innit?

The Emotional Bit

Memories can tear us apart, but they can also fill us with warmth and love. I’m fortunate that I have lots of happy memories because I had loving parents. It’s all there in my long-term memory – hidden beneath the shit. But treasures are worth digging for aren’t they?

Confessions of an Autistic Human: Resting Bitch Face

A man came up to me in the street one day and he said, “SMILE! It might never happen!”

What might never happen?

This kind of thing happens to me a lot, and there’s a reason.

Resting Bitch Face

I have a serious resting face, otherwise known as ‘resting bitch face’ because if you’re not grinning like a lunatic 24/7, apparently you’re a bitch, and a miserable one at that.

If a man has a serious resting face, does that mean he’s got ‘resting bastard face’?

*Googles resting bastard face*

Apparently it does!

What I want to know is – where did this expectation for women to smile come from?

When a man tells a woman to smile, is it because, at a conscious or unconscious level he believes that they are subservient and exist to please him? Some might see it as a casual remark that means nothing, but what if it’s really about control? The man wanted me to smile, regardless of how I was feeling. For all he knew I could have been grieving the loss of a loved one. I wasn’t, but the point is that he had no regard for my feelings – only how my face affected him.

We only have to go back six decades to see how this was a way of life because women were generally subservient to men. Their purpose? To look after them. To keep them happy, no matter what.

Here are a few of the tips on how to be a ‘good housewife’ taken from Good Housekeeping 1955.

Be a little gay and more interesting for him. His boring day might need a lift and it is one of your duties to provide it for him.

Greet him with a warm smile and show sincerity in your desire to please him.

Be happy to see him.

*retches violently*

Obviously, ‘gay’ has a different meaning these days, but in those days it meant carefree”, “happy”, or “bright and showy”.

What I want to know is this: How the hell did these women manage to smile as they waited on their husbands hand and foot? Sure, the men were out earning the ‘filthy lucre’, but the wives weren’t exactly sat on their arses all day were they? They cooked, cleaned, laundried, (not a word according to WP, but it’s staying in) shopped, looked after their children, and elderly parents.  How more men didn’t end up with arsenic poisoning – I’ll never know. Can you imagine spending the morning scrubbing hard floors to have your other half walk all over them in his dirty boots whilst expecting you be a ‘little more gay’?

In contrast, I texted my other-half to inform him that the dog’s vomited all over the kitchen floor. How’s that for gay?

Thankfully, we’re no longer shackled by such chauvinist crappery – which is why I don’t appreciate random blokes walking up to me in the street and saying stuff like “SMILE. It might never happen!”

As for the annoying wedding photographer I encountered at my brother’s wedding in the early 80s..

“Are you going to give me a smile shuggie?”

Fuck off. I’m 12 years old, hormonally imbalanced to the point of murdering somebody (you, if you don’t piss off) and I’m being forced to wear a pink dress when I should be wearing jeans and an AC/DC tee shirt! Take your smile, and your camera, and SHOVE IT UP YOUR ARSE!!

P.S Don’t call me shuggie.

..is what I wanted to say, but I’m autistic, and I have the verbal communication skills of a wheelie bin – especially when stressed, let alone hormonal – so I just stood there looking like an angry blancmange..

Fair dos. The man was a wedding photographer. It was in his job description to encourage people to smile at weddings, but it’s still annoying when you’re a tomboy in the throes of adolescence, and some bloke is trying to make you smile when all you really want to do is listen to some heavy metal and get on with hating the world. You get me? Goes for school photographers too. Annoying gits. I hated school with a PASSION. Why on earth would I want to smile? Do people smile in hell? DO THEY?!!

My high school photograph was an absolute stunner: Greasy hair, angry looking acne, and an expression that one usually sees in mugshots. Needless to say, as soon as the opportunity presented itself, I relocated said photo from the ancient Jacob’s biscuit tin to the bin, but not before I manically cut it up into a million pieces. But miserable school photographs isn’t just an autistic thing because I’ve seen my NT husband’s high school photograph and he looks like he’d just been given a months detention!

I don’t have to smile if I don’t want to. If I was to smile all the time, I’d be carted off to the nearest secure-unit or A & E because people might assume I’ve had some kind of seizure. We’re not meant to smile all the time – it makes your face ache.

Ironically, ‘face ache’ is a term for people who don’t smile.

‘Eh up! Here comes face-ache.’

Am I the only one who sees the ridiculousness in this? ISN’T THE WORLD CONFUSING ENOUGH!!!

Of course, we could always flash people our very best Jack Nicholson ‘The Shining’ smile. You’ve got to show them teeth, see. Top and bottom. It’s predatory. Technically, it’s a smile, but it’s a menacing one. Makes people uneasy. They can never quite work out if you’re harmless or a serial killer.

While I have become aware that I have ‘resting bitch face’, it’s not all of the time because my face does what can only be described as ‘aerobics’ when I’m talking or listening – something that I only became aware of when I saw myself on video. As much as I cringe when I see myself on camera, it’s also fascinating to see what happens to my face when it’s not in serious bitch mode. I thought it was just a quirk of mine until I saw Sara Harvey (Agony Autie) pulling off some serious facial gymnastery of her own on a video at an autism event and now I’m wondering if it may be an autistic thing? Can you relate?

When I do smile, it’s because I have reason to – not because some random bloke walks up to me in the street and demands one. I reserve my (non-psycho) smiles for the people I love because they are worth the effort. It might not be the most attractive of smiles, but it’s real – it’s me.

Plot twist: can you guess which song my mother chose for her funeral?

You got it: Smile.

Taking the piss from beyond the grave. Thanks Mum. 😉 

Not smiling makes me smile ~ Kanye West