Autism: Confessions of a Skin-Picker

 

What’s Stimming?

Stimming is self-stimulatory behaviour. It is repetition of movement, sound or movement with objects.

It’s done for relief and pleasure.

Simplified: Stimming calms or stimulates.

Everybody stims, however, NTs have more socially acceptable stims and are more able to control them.

With an autistic person – stims are necessary to their mental health well being.

We stim to release tension or to stimulate ourselves.

Some people stimulate themselves to feel pain for pleasure, like my friend who liked to pull her leg hairs out one by one using tweezers.

*eyes are watering*

I didn’t know I was autistic until five years ago – so I’ve had forty plus years of generally hiding/suppressing behaviour that I now understand to be stimming..

It started with spinning where, as a small child, 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 stroke or manipulate in my hand. Doing this soothed my anxious mind – albeit temporarily. I wasn’t interested in constructing things like the other children. Sod THAT for a game of conkers! I just wanted to sit in a corner and stroke stuff!

Speaking of conkers…

I like to touch them. (NOT a euphemism)

Then came the glue..

You’re probably reading this and thinking, ‘Glue? Oh my God, 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..

One of my all time loves is art and that love started in school. However, art was sensory for me. Visually? Great. Smells? Not so great.

I loved the smell of paint. Still do, but not when it’s combined with the aroma of curdled milk, cabbage and dried vomit as was the case in school. That said, I loved to create pieces of art so I forced myself myself to tolerate everything else..

The other sensory issue was that I almost pathologically HATED getting stuff on my fingers..

My mother told me that I was using a knife and fork a lot younger than my brothers were. She presumed it’s because boys are generally slower than girls? I think it’s probably because I disliked the feel of slimy food on my fingers. *shudders* This also explains why I find making pastry so unpleasant, hence, I avoid it wherever possible.

Whoever invented ‘Jus Rol’ has my unwavering adulation.

So, glue..

The first time I used glue – the stickiness made me anxious but I had communication issues so I wasn’t able to ask if I could go and wash my hands. I was starting with palpitations when THIS happened:

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!

I could happily lose myself in a glue-peeling session which made my school day slightly more tolerable.

Note: FFS don’t try this using Super Glue!

Glue-picking was the precursor to my most used stim – skin picking.

Yeah, a lot of my stims are gross.

When I was 21 I got chicken pox. Initially, this was crap because I was pregnant at the time. I was the size of Brazil with spots that itched like fuckery. I remember the one thing that people kept saying to me: ‘WHATEVER YOU DO, DON’T PICK THE SCABS!’

That’s like telling Mary Berry to stop baking and become a binman..

OF COURSE I PICKED THEM!!

I especially loved the scabs on my head because I would pull them ever-so-slowly through my hair which was, like, orgasmically pleasurable.

I’ve always picked my spots. And other people’s. Feeling that satisfying ‘pop’ as zit matter is released at high velocity? That’s right up there on the pleasure scale for me. Welcome to the pleasure dome mateys! I literally don’t understand how a person can have a big fat juicy zit and NOT want to pop it? Weirdos.

Downside is: I have scars.

LOTS of scars.

I also pick the skin off my lips. Sometimes with my fingers – sometimes with my teeth. NOT the best of stims if you like vinegar on your chips!

Zit slaying and lip picking are stims I try and save for ‘me time’ because even I know that it’s socially unacceptable to be pecking at yourself in public like a demented pigeon. Even so – sometimes I forget myself..

My bad, motherfunglers.

Rest assured that once I’ve acknowledged my skanky behaviour, I switch to a more socially acceptable stim – like fiddling with my cube/keys/phone/pebble/whatever.

Should I mention that I’m allergic to nickle so when I wear cheap earrings, my skin weeps, then crusts over? I guess you’ll know where I’m going with this so I’ll move on..

My, not gross stims, include rocking back and forth or side to side. I take more in when I’m rocking because I am less focused on my anxiety. It’s a gentle movement but if I’m having an anxiety crisis at home, it’s full on IN YOUR FACE back and forth rocking sometimes combined with manic pacing up and down.

Then there’s my fidget cube. I say mine. I may have nicked it from The Boy because his stim of choice is to chew his nails..

I also use a spinner which I like to spin near my cheek because I like how it feels on my face. No doubt, I’ll probably end up in A & E one day with a spinner-related facial injury..

NOTE: I’m trying very hard NOT to think of the scab..

Next, is my thumb ring.

Yep, I just lurve touching my ring.

Leaaaaaaave it.

I always wear one on my thumb which I manipulate with my index finger or my left index finger and thumb. It started off as me trying to give myself an edgy look? Then I realised that manipulating it calmed me down, so I’ve worn one for years. My current one is metallic rainbow colours so I get visual and tactile pleasure. Win and win!

I also LOVE soft materials. I wear soft leggings and stroke my legs, but not in a kinky way. I love blankets too – especially fleecy ones. They comfort me and keep my extremities semi-warm as I seem to be lacking blood flow in my hands and feet. Plus, under a blanket, you can hide from the world.

Also, people trying to sell you PVC windows. Or God.

Going back to pastry, I was once informed that cold hands make better pastry? So it’s a shame that I dislike the feel of it on my fingers or I could be the pastry queen of the North by now, no?

I get that I have some gross stims. I mean, picking my skin is pretty, er, what’s that word the young un’s use? Ah yes, ‘minging’ but it gets me through the day and through life. It’s not like I sit in Costa flicking my skin into people’s skinny lattes is it?

FYI, I am picking my lips right now as I’m editing this post for the 135th time.

Finally, people may tell you that stimming is offensive or unacceptable. The problem is with them, not you. Stimming has a purpose. It is part of the armory that we need to exist in this world. For this reason (and many others) it is perfectly acceptable to tell them politely, but with conviction, to eff off.

Me? I stim to calm myself and because it feels good.

 

 

 

 

 

 

 

 

 

 

 

Autism and Socialising

I avoid socialising like the plague because I am socially challenged, phobic, whatever. However, on occasion, I’ve forced myself to be sociable in order to try and fit in, often with disastrous consequences.

This was one such occasion..

Sometime in the 1990s

I found myself agreeing to meeting up with my work colleagues for a drink.

Needless to say, NIGHTMARE!

I don’t remember how I got to the pub. What I do remember is feeling all those fight or flight symptoms that my body produces when it thinks it’s in danger.

The danger of having to walk into an unfamiliar building.

The danger of having to locate my work colleagues without the aid of a mobile phone.*

The danger of having to act ‘normal’.

I walked into the pub. I was possibly only standing there for a few minutes, but it might as well have been hours. I didn’t know what to do. I couldn’t see any familiar faces. I was aware I was being stared at. Plus, my shoes were pinching the shit out of me. I was just about to adopt the flight aspect of the stress response when I saw one of my colleagues waving at me.

Flight was no longer an option.

There were seven girls including me. I say girls – we were all in our 20s but I was the oldest. I was also the only one who was married and who had children so I was already on a different ‘page’, as it were.

I refused a drink. This was met with some funny looks. I mean, who refuses a drink in a pub, right?

I sat fiddling with stuff in my handbag and concentrated very hard on not throwing up.

No doubt somebody offered me a crisp. It was a pub. People offer crisps. It’s what people do.

I’d have said: ‘No thanks’.

I’d have thought: ‘I’m actually struggling to swallow at the moment, so I might choke on the fucking thing and one of you might have to do that humping me from behind move to get me to cough it up. That or phone for an ambulance.’

Not that I overthink things at all..

I just sat there trying to nod and smile in the appropriate places, as you do.

After about five minutes (which felt like five hours) a man appeared in front of me, smiling, and said, “Hi, (my name) you remember me don’t you?”

All I could manage was a vacant stare.

I’ve had random people approach me in the street and say stuff like, ‘SMILE LOVE! IT’LL NEVER HAPPEN!’ so I wondered if this was one of those times?

Or maybe he was pissed?

The difference was that THIS man knew my name and was coming out with details about me.

My brain was working overtime trying to place this person. Why couldn’t I remember? What was wrong with me? Was I having a stroke?

What happens when I’m stressed is that my words don’t come out right. I mix them up or say something I don’t mean to say. Or the words don’t come out at all. I need time to process before I speak in social situations. There was no time here. I was in a situation and my brain couldn’t handle it.

My body went into panic mode.

I could feel the stress response flooding my entire being. My face was burning and I could feel cold sweat running down my upper arms. You know those embarrassing sweaty patches that appear on the underarms of your shirt? That. With bells on.

My heart was thumping out of my chest.

My mouth was dryer than a camels hoof.

I wanted to vomit.

I needed a really BIG wee.

My eye tic kicked in.

My body was reacting as if a drooling tiger was standing in front of me. I was powerless to stop what was happening to my body. Nor could I run from it. I had no option but to endure it..

In the background, I that noticed the other girls were nudging each other doing that giggling thing that a lot of girls do. They looked at me, then they’d look away and giggle some more.

*confused face*

I wanted to run as fast as my size fours would carry me but I couldn’t move.

During fight or flight some people run, others fight. Some just freeze.

I froze.

I’m a freezer.

Freezing is generally a primeval attempt to stop a predator from seeing you. The problem was that the predator had not only seen me, but was tucking into my innards – theoretically speaking. I think this means that should I find myself in the direct line of an articulated lorry – I may quite likely be run over.

I don’t remember anything after that, as is the case with anything traumatic.

Some of you might read this and think ‘Traumatic? Oh get a grip you silly cow!’

I get that it sounds ridiculous but you’ll either understand this or you won’t but the definition of traumatic is deeply disturbing or distressing.

To me, it was traumatic and my body reacted accordingly.

Some days later, one of the girls confessed that they’d asked the man to act as if he knew me – for a laugh.

I was the joke.

Am I missing something here?

Were those girls being funny?

Or were they being mean?

To this day, I don’t know.

I never went out with them again.

Why would I want to?

I didn’t understand their language. They literally giggled at EVERYTHING, which I found irritating. I don’t giggle. If something is funny, I laugh. Sometimes until a bit of wee comes out. Granted, some of this is down to a compromised pelvic floor but mostly it’s because I laugh from my belly. Giggling to me is like water crackers, as in, what’s the point?

So, I was being publically humiliated and apparently it was hilarious.

I get that I am different. I’ve always known it but I’ve tried my hardest to fit in. The trouble is that the harder we try to fit in, the more we make ourselves stand out.

Back then I didn’t have a clue why I couldn’t fit in.

Now I know it’s because I’m autistic.

I’m the misfit.

The odd one out.

Or I was..

Then I found my ‘tribe’.

People who get me.

People who understand everything I say and do.

People who don’t look at me as if I am a moron.

People who will read this post and think, ‘Yeah, me too!!!’

People like me.

I go back through my life and wonder, could have done things differently? The answer is no. My brain will always react the same way because it’s wired up differently to the neurotypical brain. I am what I am and all that shit and as Gloria Gaynor says, ‘What I am needs no excuses’.

Me, the reboot, doesn’t push myself to socialise like this anymore. These days, I reserve my energy for people who deserve it. I no longer say yes to things I don’t want to do in order to fit in. I no longer make excuses, nor do I have to provide an explanation why I don’t want to do something. I politely decline the offers (not that there are many) and mentally high-five myself for putting myself first.

I bang my own drum
Some think it’s noise, I think it’s pretty

I Am What I Am ~ Gloria Gaynor

 

 

 

 

 

 

 

Autism and Burnout

Burnout is a chronic state of stress which leads to physical and emotional exhaustion. It might manifest as anxiety or depression or both.

The Signs Of Physical and Emotional Exhaustion

  • Fatigue: You lack energy and feel more tired than usual.
  • Insomnia: Starts with the occasional bad night and progresses to the inability to sleep or stay asleep every night.
  • Concentration: Lack of sleep affects concentration and the ability to complete tasks.
  • Physical Symptoms: Palpitations, chest pain, chills, stomach aches, headaches and hundreds of other physical symptoms that make you worry that you are gravely ill which in turn forces you even further down the wormhole.
  • Illness: Your body becomes more susceptible to immune related illness.
  • Appetite: You may lose your appetite or go the other way and over-eat, especially sugary or high-carb foods.

Alongside the physical signs, there are emotional signs.

  • Loss of enjoyment about things you love.
  • Negativity: You become pessimistic about everything. In my case, it isn’t glass half empty. It’s glass smashed into smithereens all over the floor!
  • Isolation: Socialising is hard work for most autistic people but during burnout, we don’t have the energy or inclination to socialise at all. This includes social media.
  • Detachment: As an autist, I have always felt detached from everybody else but detachment from burnout can be a detachment from everything including yourself.

When you reach this stage it is illness.

A lot of autistic people will reach burnout stage at some point in their lives. The reason is that trying to exist in an NT world is stressful and exhausting and the human body can only take so much battering from stress hormones before it starts to burnout.

Burnout.

Nervous Breakdown.

Shutdown.

Call it what you will but it ALL amounts to the same thing.

Your body has had enough and is no longer whispering words of warning to you. IT IS SCREAMING AT YOU TO FUCKING DO SOMETHING!

The whispers started for me as a small child when I constantly felt sick or threw up and was living in a constant state of fear.

The whispers got louder as a teenager when I developed an eating disorder as a way of trying to gain control of my own life.

As a twenty-something the whispers told me that it wasn’t normal to be seeing ‘black things’ scurrying across the floor that nobody else could see or imaginary spiders in front of my eyes.

At thirty-something I tried to shut the whispers up with alcohol.

At forty-something my mother died and I had my first nocturnal panic attack.

At 46 years of age I had a nervous breakdown.

Finally, my body said ‘ENOUGH’.

Physically and mentally, I burned out.

My body has pumped so much adrenalin into my system that my fight or flight response now triggers when it shouldn’t – like in response to my dreams or the heating coming on. This is why I have insomnia. This is why I wake up in the early hours every morning.

Why do autistic people burn out?

The more ‘highly functioning’ we are, the more is expected of us and the more we push ourselves to be neurotypical. People can’t see what’s going on inside of us. They just see somebody who ‘looks’ perfectly normal. The effort it takes to be able to pull this off is phenomenal and sooner or later, the consequences will be burnout.

A lot of autistic people suffer from anxiety and anxiety means fear.

We fear walking out of the front door into a noisy and confusing world. We fear having to socialise. We fear having to make small conversation at work. We fear that we will lose control. We fear people being able to see past our pretence of being neurotypical. We fear rejection. We fear there being no escape route.

We fear.

Our hearts beat faster. Our bodies are constantly primed to fight or run. The fight or flight response is triggered numerous times a day and over time it takes longer for our bodies to recover from it. Eventually, even the fittest of us will succumb to illness. Either physical, mental or both.

Once you have had a breakdown you are never the same. It’s an invisible scar. A wormhole opened up and you know that it won’t take a lot for you to lose yourself down there again. As if life wasn’t already tough enough? Now there is this fragility about you. The difference is that by now you know you have to take better care of yourself and your needs.

You learn to say no.

You learn to let go of people/situations that drain you.

You accept your limitations.

You will hang up the neurotypical ‘skin suit’ for good.

What the fark is a skin suit?

If you’ve ever seen Men in Black, you’ll be familiar with the big ol’ ‘bug’ who comes to Earth. The alien nicks farmer Edgar’s skin so he can look less, er, conspicuous. Only it’s not his skin, so it doesn’t fit. He looks weird and it makes him uber cranky because it feels pretty shit to be wearing someone else’s skin. A bit like trying to cram yourself into size ten jeans when you are a generous twelve..

Feeling ‘alien’ is a feeling that a lot of autistic people identify with. We feel like we don’t belong here and a lot of us pretend to be neurotypical in order to not stand out. It’s an act and acting requires effort. When we shut the outside world out, it’s such a relief to finally be us.

My breakdown coincided with my diagnosis and even though I am still fighting to rid myself of panic disorder and insomnia, I am finally free of the constricting neurotypical suit I’ve been inhabiting for the majority of my life.

I feel lighter.

I don’t push myself to be ‘normal’ anymore.

If I can’t go to social functions I don’t beat myself up about it.

If I can’t face shopping in the supermarket, I’ll do it online.

I haven’t given up on life. I just find ways that make living a little easier.

When I get overwhelmed I shut myself away like I have always done. The difference is that I no longer feel guilty about it. People can think what the hell they like because you know what? They will anyway because that’s what people do.

This is no longer about them.

It’s about you.

It’s about self-care.

With social media, I get overwhelmed pretty quickly so I have learned to give myself breaks from it and to limit time spent on the internet. The internet can get pretty intense and I soak up the negative stuff like a sponge. Bad news and hate is all over the internet. It affects me, then I get ill. Yes, we live in a computer age and the internet can be useful but it can also be damaging to your mental health so it’s up to us to police our internet time so it works for us not against us.

I have also accepted that I can’t do ‘life’ on my own so now I ask for help when I need it. Being autistic, there are certain things that I struggle with. Asking for help, isn’t being weak. It’s self-care.

The thing is that I’ve have put so much effort into existing that I’m exhausted and for what?

To fit in?

So I don’t offend people by saying no?

I’m done with all that.

We should all be done with that, right?

If you can identify with this post. Please don’t let another day go by where you live your life on somebody else’s terms. If it hasn’t already, it will make you ill.

It’s time to be the fabulous human being you were born to be.

It’s time to be you.

“If you celebrate your differentness, the world will, too. It believes exactly what you tell it—through the words you use to describe yourself, the actions you take to care for yourself, and the choices you make to express yourself. Tell the world you are one-of-a-kind creation who came here to experience wonder and spread joy. Expect to be accommodated.” ~ Victoria Moran – Lit From Within

 

 

 

 

 

 

 

The Teenager That Santa Forgot..

One year, Santa forgot me.

It’s true.

To be fair, I wasn’t a small child. I was a teenager.

So how did I come to be left off Santa’s list?

It was 1985. The year of the first successful heart transplant, Windows 1.0, The Golden Girls, The Breakfast Club, Live Aid, Take on Me and wearing your jacket sleeves rolled up Miami Vice style..

I was:

Fifteen. Teenager. Vegetarian. Knew Everything. Annoying.

I don’t remember how I came to be vegetarian, I just know that from 14 I declared myself a meat free zone. I lived on cheese, as 80s vegetarian options looked (and tasted) like Trill. Thank God for Linda McCartney, eh? Problem was, Mum never did understand the concept of vegetarianism. She gave me cheese in place of meat but then poured gravy over it which kind of defeated the object..

Maybe it was hormones combined with my undiagnosed autism (and copious amounts of cheese) but my teenage years were funked up and not in a good way..

I’d argue that black was white and I’d do it with a PASSION. Not content with being meat-free, I terrorised everybody else for being ‘murderers’. Dad took it all in his stride. He thought it was hilarious, but Mum was suffering from the menopause (or rather we were suffering from her menopause) and that particular year she and I clashed more times than a pair of cymbals.

By Christmas, I was struggling. Doing the social thing exhausted me mentally and physically. Going out took hours of stimulating myself with rock music and days of recovery time afterwards. Every time I convinced myself it would get easier but it never did because exposure only works with shyness and I wasn’t shy. I was autistic.

That year I’d asked ‘Santa’ for loads of records including The Cult’s ‘Love‘. I’d been borrowing my mate’s LP but she was pissed off with it spending more time on my record player than hers, so I was looking forward to getting my own copy. Gimme a whoop!

Christmas Eve

We were allowed to lie on the sofa watching films all day and the jar of Quality Street was ceremoniously opened. It was a good day and in the evening Mum challenged her inner Hyacinth Bucket (It’s Bouquet) and did a candlelight supper, which was V posh.

I felt very grown up.

I was even allowed wine. SHHHHHHHH!

Dad was on the Jack Daniels.

Brother was semi-pissed on Southern Comfort.

Mum was on the Stella (I’ll fight you and everyone else) Artois.

Everyone was happy.

Until it went tits up..

I don’t remember what I said, exactly. Maybe it was something about meat and murder again? I just know that I opened my big mouth and said something that had my mother slamming the louvered doors off their hinges as she flounced off into the kitchen.

In my confused mind, ONE thing registered.

SHIT!

Dad was rolling his eyeballs.

Brother was smirking at me.

Elvis was crooning Blue Christmas in the background.

My mother was turning the air blue in the kitchen in-between nose blowing sessions.

Tentatively, I inched my way into the war zone but took one look at her face and knew that grovelling was futile. She looked like Alice Cooper, only with red eyes. Even in my limited understanding of body language, I knew my best (and only) option was bugger off upstairs and leave Dad to smooth things over.

So I went to bed and endured one of the most miserable nights of my 15 year old life.

What, in the name of Ian Astbury, had I said to incur SUCH a reaction?

I still don’t know.

All I know is that I was forever being reprimanded for ‘showing off’.

Showing off?

Er, I’M AN INTROVERT?!

In hindsight, I know that the Christmas Eve fiasco wasn’t ALL down to me. I blame Stella Artois and lack of oestrogen. Stella because it always made my mother do the crying thing and lack of estrogen put her on a permanent hair-trigger. It could have just as easily been my dad or my brother who said something to upset her, eh?

But it wasn’t them.

It was me.

Mostly what got me into trouble were my meltdowns. I’d become overwhelmed, therefore out of control, and it was interpreted as me being a little shit – as so often is the case with autism.

Nobody knew I was autistic.

Not even me.

Christmas Day

I unenthusiastically wished Jesus a happy birthday and prayed that he’d put in a good word with my mother overnight and she’d forgiven me for “ruining Christmas”. I lay in my miserable pit until I heard sounds of life downstairs, then slowly made my way down into the kitchen where Mum was perched on her stool puffing away on a Silk Cut. She narrowed her eyes at me. This look meant, ‘Approach me NOT. I’m still pissed off with you!’.

I slunk into the living room..

There, lit up in all it’s magnificence was our faux Christmas tree and underneath it were three piles of presents.

One for my brother.

One for my dad.

The third pile was my mother’s.

FUCK!

Didn’t say fuck – obvs -my life was hanging in the balance as it was.

For the first time in my existence, Santa had forgotten me.

I’D MADE THE NAUGHTY LIST.

THE SHAME!

Mum looked weird. Sort of angry and sad at the same time and that’s quite a hard one to pull off!

Brother was still smirking. That litle shit positively basked in my misery!

Tears slid down my face.

I don’t think I’ve ever felt so sorry for myself in all my life.

Dad couldn’t take it anymore. He looked at Mum and said, “You’ve made your point Flo. Come on now. It’s Christmas”

Mum snorted and flip- flopped upstairs in her new mule slippers.

A few minutes later she appeared with my presents.

She went from angry to misty eyed in a matter of seconds and hugged me so hard I thought she’d busted my lung.

“And let that be a lesson to you, Madam!”

Despite having no literally NO idea what this lesson was supposed to be, I chose to keep my trap shut.

Maybe that was the lesson?

Ordeal over, I started ripping into my pressies with the finesse of a three year old on E numbers.

My first gift?

It was Love.

When I tore off the wrapping paper that Christmas morning in 1985, I had no idea that 32 years later, the lyrics to the title song would have such significance to my very existence on this planet.

I guess you could say that I’ve spent most of my life in the ‘wrong hole’?

Now don’t go and ruin this moment by thinking rude thoughts about holes? *serious face*

I mean ‘wrong hole’ as in trying to be neurotypical.

Spent a long time in this hole
Spent a long time in the wrong hole

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Spontaneity Hurts.

Say yes, and you’ll figure it afterwards ~ Tina Fey

Doesn’t work that way for some people, Tina.

It certainly doesn’t work that way for me.

Sometimes it will appear that I am being spontaneous, but the truth is that I will have been thinking about something in my head long before I actually say, ‘Shall we do this today?’ However, this can only apply to me and OH as The Boy needs time to adjust to any changes because he is autistic too.

One problem I’ve always had is having to cope with other people’s spontaneity – such as those who turn up without notice. I’ve had decades of people just turning up unannounced. There have been countless times when I’ve hidden upstairs or in the kitchen to avoid answering the door..

As part of my diagnosis my ex husband wrote a letter about me as, at that point, he’d lived with me the longest. He referenced how I used to do these things and how at the time he thought I was being moody or rude. He noted that every time the door went or the phone rang, I was suddenly elsewhere..

My parents never turned up unannounced. I guess this was because my mother also struggled with unannounced visitors. My mother-in-law, bless her, was different. She was full on neurotypical and as old fashioned as they came. I know without a doubt that she loved me, but I also know that she didn’t understand me. She’d often ask her son why I was so moody, only I wasn’t being ‘moody’. I was struggling to process the change to routine.

In the early years of my first marriage, I was practically a hermit. I struggled with everything that most people do without thinking. Even fetching the milk in was stressful because there was a chance that one of the neighbours would see me and I’d have to speak to or ignore them. It was often the latter. Sometimes because it was easier. Sometimes because the words wouldn’t come out. Hence, I got myself a reputation for being ‘weird’ or ‘stuck up’. I’ve waited hours for neighbours to go in just so I could walk up the street. On especially anxious days, I have cancelled appointments rather than walk past people in my street. Sounds ridiculous, I know, but it’s true.

My mother-in-law had set days where she would come to ours. The routine worked for me. However, sometimes she’d just turn up when I was on my own. She’d peer in through the living room window and rap on the glass. I loved this woman so much but my heart would sink, not because I didn’t want her, but because I wasn’t prepared for her. There was no time to get my head around it and I had no choice but to let her in because no matter how muddled my head was, I would never have left an elderly lady on the doorstep.

A lot of people like to be spontaneous but I’d hazard a guess that the majority who do are neurotypical.

Take Christmas, for example..

Every year, I give OH a list of what I want for Christmas (almost always books) and he always says, ‘We’ll see’. On hearing those words, I become anxious. He has this thing where he likes to ‘keep me guessing’. It’s utterly NT and it drives me NUTS!

Every year, I tell him, ‘I don’t like surprises. Please just get me what I’ve asked for’.

Every year he says, ‘We’ll see’.

I’d hoped that my DX would change this and he would understand that surprises stress me, even nice ones.

Last week, I told him that I’d give him my list of books and he replied that I’d be getting something else as well because it made him happy to surprise me.

What’s more important? The pleasure of the giver? Or the distress of the receiver?

I can’t help how I am. I can’t adapt. No matter what I do, I will ALWAYS react negatively to spontaneity.

I get that there has to be compromise in any relationship, let alone a neurotypical/autistic one, but sometimes compromise isn’t possible. In this situation there can be no positive compromise. It can only be that OH does as I ask him or I try and cope with the anxiety in order to make him happy.

An example of spontaneity malfunction from my childhood..

We’d just moved and my life had been turned upside down. That summer, I turned 11 and my mother decided that I was old enough to be sent on errands, whereas before, I’d always gone with my brother. One day she told me to go to the local shop for her. It was a bad day anxiety wise and I had no confidence at all. I reacted badly. However, my mother interpreted my behaviour as being normal for a girl my age. Except that I wasn’t being rude. Or lazy. I was overwhelmed.

How can a trip round to the local shop overwhelm you?

Here’s how.

The request was spontaneous. There was no time for me to process or plan. Mum wanted something from the shop and she wanted it there and then.

The only route to the shop was along a busy main road where the traffic, at the best of times, was loud and unrelenting. Part of pavement narrowed with railings on the roadside and overgrown bushes on the other. It was claustrophobic and forced you into having communicate when people allowed you past or when they thanked you for allowing them past because for all my problems, I have always practiced good manners whenever possible.

The shop itself was half post-office, half grocery shop and it was always busy after around 10am. Mum sent me round at dinnertime – one of it’s busiest times.

What happens to my brain when I’m stressed is that it goes blank. I struggle to process and retain information. I remember standing in the shop with sweat literally pouring out of me – staring at what my mother had written on the piece of paper..

I was looking but I couldn’t see anything..

The noise was deafening. That, combined with the smells of cooked meats and that general grocery shop smell was an assault on my senses. The ‘normal’ thing to have done would have been to ask someone, but that meant communicating and it was beyond my capability at that moment in time. In the end, I walked out of the shop with nothing and went back home feeling useless. It was a feeling I would become familiar with as the years went on. It really bothered me that I couldn’t do the spontaneous thing without my brain malfunctioning. I need to plan. I need to know where everything is, right down to the toilets. I need trial runs to unfamiliar places. I’ve done this with holidays. It’s a part of my autism that I wish I didn’t have but I also know it’s a part of me that will never change.

Spontaneity doesn’t make me feel ‘alive’ like it does with most people. It freaks me out and fucks me up.

Since being formally diagnosed as autistic, a lot of the guilt has left me. How can I beat myself up over something that’s beyond my control? Nor do I feel the need to apologise anymore. I can try and educate people but I can’t make them understand that spontaneity hurts.

  I might say yes IF I can figure it out beforehand ~ Me

 

 

 

 

 

 

 

 

 

 

 

Christmas and the Autistic Child

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Most children like Christmas right? For many on the autistic spectrum, Christmas is a stressful time of year. The inevitable changes to routine are enough to send some children spiralling into one meltdown after another..

Same for autistic parents.

The Boy’s anxiety has been climbing for weeks. As soon as things change at school his behaviour deteriorates. He’s on a VERY short fuse and the simplest of requests, like taking his coat off, has him throwing stuff and stomping off upstairs screaming that he wants to DIE. He’s eight going on thirteen only this is him BEFORE the hormones kick in!

Can you imagine when they do?

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Trip hazard? Or my son when the testosterone kicks in?

The Boy’s need for me is ever greater as he battles with a brain that struggles to cope with Christmas. He likes Christmas but struggles with it just as he struggles with a lot of other things he likes.

There are no decorations up at our house yet as we’re trying to keep stimulus to a minimum and my anxiety is so bad that the mere thought of them makes my heart race. The control freak within me struggles to allow other people to do it and in the past when I have let the kids, er, ‘help’, I have stood there fighting the urge to rugby tackle them to the floor in order to prise the baubles from their clammy little hands. *whispers* I re-did it once they were in bed. It’s something I don’t like about myself but it’s a pathological need for certain things to be aesthetically pleasing in my eyes.

When it comes to visiting Santa, forget it. It’s a sensory nightmare.

Queuing = Hell.

Noise = Hell.

Migraine inducing fairy lights = Hell

Sitting on Santa’s knee. Do they still do that? = Hell.

I hated it as a child. The Boy managed one minute in a queue once and we had to leave. Do your child and yourselves a favour and go to an autism friendly session where the visits are timed, you can take your own present. Visiting Santa should be a pleasant experience for every child, no?

There are things you can do as a non-deranged parent to make things a little easier for your autistic child.

Decorations

  • You can involve your child in buying decorations or letting them help you to put them up.
  • Introduce the decorations gradually. It’s probably best not to have it looking like Santa’s Grotto if your child gets easily overstimulated.
  • Give some thought to your Christmas lights. If your child is very sensitive, a migraine inducing strobe effect probably isn’t the best idea. Static or gentle fade in and fade out lights will be more appropriate.
  • Use countdowns for putting the decorations up and taking them down.
  • Use social stories and visual calendars.

Visiting Santa

  • Check your local papers/social media for autistic friendly Santa-sessions

Presents

  • Mountains of presents will overwhelm most autistic children so it’s best to limit how many they get or don’t put them all out on Christmas Day.
  • If your child has sensory issues pay attention to the paper you use to wrap the presents with.
  • If unwrapping make them anxious then don’t wrap them at all.
  • Place a familiar toy next to the new presents.
  • Try some gentle classical Christmas music in the background especially if classical soothes them normally.

Family

Don’t feel under pressure from your family. If you know your child can’t cope with a big family get together on Christmas Day, then don’t be afraid to tell them to sod off – albeit politely. Your child’s well-being has to come before Great Aunt Ada parking her arse on your sofa all day scoffing the Quality Street eh? Life is different when you have an autistic child. If people get it, great. If they don’t, educate them until they do get it. Maybe give them a book on understanding autism as a Christmas present?

Familiarity

Christmas Day is just the three of us. There are no visitors. There is no Christmas dinner with party hats and other such paraphernalia. The Boy has his usual food and bedtime is the usual time with the usual ritual of a story and his Classic FM.

The Rules are that there are NO rules when it comes to autism. Each person is different. Some love Christmas, some don’t. All autistic people are affected but not necessarily in a negative way.

Me? I find Christmas stressful BUT it’s also the season of fairy lights and I BLOODY LOVE fairy lights!!

As a child I used to lie on the floor under the Christmas tree and stare at them for hours on end. My Nan, having downed a few brandies, would say, “You’re a funny little girl” I used to wonder why she was calling me funny when I hadn’t said or done anything funny. Now I know she was calling me weird. MY OWN GRANDMOTHER!!

Christmas is difficult for me in ways which most people wouldn’t understand. I’m not a Christmas hater – it’s just that there is too much going on and that sends my anxiety orbital. Social media is crammed with Christmas. TV is bombarding us with adverts/mini-movies for the hard sell and it gives me a headache. If I could cherry pick bits of Christmas it would be lights, carols and the act of giving. You can keep the crowds, commercialism and my pet peeve, ‘Secret Santa’.

I don’t suppose it helps matters that my father decided to shuffle off his mortal coil on a Christmas Day. To lose someone you love on any day of the year is bad enough but to lose them on Christmas Day is epically crap. The image of Dad’s lifeless body while Noddy Holder screeched “IT’S CHRISSSSSSSTMAAAAAAAAAAAAAAAS” is forever seared into my memory and while I fight to bring forward the memories where he was the life and soul of Christmas, this one always wins.

As regards The Boy, we try to keep things as close to normal as is possible. Whatever ‘normal’ is.

Header Image via Creative Commons

 

 

Senses Working Overtime

I’m hypersensitive.

It means that I experience the world in an overly-sensitive way both physically and emotionally.

Hypertactile

For me, this means that I feel discomfort at the slightest touch – cue Five Starr with their MASSIVE shoulder pads. A hand on my arm can feel like a punch if I’m sensitised enough. Sometimes OH will touch my arm and I recoil as if I’ve been shot. I can see how this affects him but I’m unable to reassure him that it’s me, not him, because I struggle to verbalise how I feel.

I also can’t tolerate certain materials which are itchy and scratchy.

Aren’t they characters in the Simpsons?

Many of my clothes have ended up in charity bags due to them irritating the crap of me. Shoes, the same. I don’t like to feel as if I am wearing clothes, see. Sounds kinky, I know, but what I mean is that materials have to be soft and not constricting..

It’s been trial and error over the years. Like when I knitted myself a mohair jumper. I know, I’m an idiot, right? It took months to knit the bastard thing. I wore it once and chucked it straight in the charity bag because I itched like a dog with fleas. Lesson learned!

After decades of buying the wrong stuff, I’ve finally settled on leggings, tunic top and boots in Autumn/Winter and Spring/Summer is jeans, tee shirt and a pair of Converse hi-tops.

Not forgetting my beloved cardigans, one blue, one black, with pockets which I wear ALL YEAR ROUND!

Hypervision.

This means that I see what most people don’t. This can be annoying AND wonderful.

I see details that most people miss. This came in handy when I worked as a packer in a pharmaceuticals warehouse because I picked up on subtle differences in packaging, IE, counterfeiting.

It also means that fluorescent lights give me migraines, as does sunlight and the blue light emitted from computers and tablets.

Hyperhearing

I used to jump EVERY TIME the school bell went and without looking up I could tell which teacher had entered the room by the sound their shoes made. Some shoes were soft and and pleasing whereas others were squeaky and f**king annoying. My maths teacher in secondary school had a particularly irritating squeak in his right brogue and he was wearing the same pair when I left four years later..

Traffic also annoys me and don’t start me on emergency service sirens. On a good day they are LOUD. ON a bad day, hearing nee-nars makes me want to rip my ears off and sling them in someone’s privet. I also hear low level buzzing noises that nobody else can. Only thing is that since I developed tinnitus, it’s hard to work out what is actual buzzing and what isn’t..

I used to be able to hear a bee fart in the next street but over the years I’ve lost hearing in one ear. This is both good and bad. It means that the other ear over-compensates – which is disorientating. I do have a sexy hearing aid courtesy of the NHS but it amplifies sound too much and increases my sensory issues, so I hardly ever wear it, hence I say, “Eh?” and “What?” a lot.

On the other hand it helps when my tinnitus is giving me gyp.

The reason why autistic people have hearing sensitivity could be due to differences in the temporal lobe of the brain, which is the area that deals with auditory processing. Or it could be that responses are learned. I don’t think they know for sure why it happens..

By far, the biggest problem with my sensitivity is that I feel too much. Swiss researchers, Henry and Kamila Markram argue that the fundamental problem with Asperger’s is ‘hypersensitivity to experience’. Rather than people with Aspergers not feeling enough – the Markrams say that it’s actually the opposite and they feel too much. That’s definitely true of me. I’m both physically AND emotionally sensitive. Unkind words really hurt me. They scar me. You just can’t see them like a physical one.

If I see a homeless person lying in a doorway, I hurt for them. The down and outs. The underdogs. Life’s rejects. The weirdos. The persecuted. I hurt for them ALL. Emotionally I am a wreck of a human being and my sensitivity is the reason that I try and stay away from the news because I get overloaded with people’s pain. I know that most people see things on the news and feel empathy but it doesn’t haunt them forevermore. That’s the difference.

I HATE how people lie and deceive. To put your faith into someone only to be betrayed is soul destroying. Having been officially diagnosed as autistic, I understand how my vulnerabilities have been exploited over the years. People sense I’m different but they mistake silence for weakness.

Here’s the thing..

It’s NOT weakness.

Can you imagine how hard it is to exist in an increasingly sensory world?

To constantly feel that you have to adapt and camouflage yourself in order to fit in?

To live your entire life in a state of anxiety and having to make choices between everyday situations in order to lessen the stimulus?

To live like this EVERY SINGLE DAY takes strength my dears.

Neurotypical people do those things without thinking whereas I have to think about almost everything I do, even how to breathe when my anxiety is bad enough.

I guess that my problem is that I am just too sensitive for this world.

“You,” he said, “are a terribly real thing in a terribly false world, and that, I believe, is why you are in so much pain.” Emille Autumn ~ The Asylum For Wayward Victorian Girls.

Things People Say That Drive Autistic People NUTS!

You don’t look autistic.

Is autism supposed to have a look?

When a person says, ‘You don’t look autistic’, it’s fairly obvious they don’t have a blithering clue what autism is. Maybe they watched Rain Man and believe that every autistic person looks like Dustin Hoffman?

Or, that you should be wearing a skull guard helmet..

In all fairness, people probably think they are paying you a compliment (ish) but what they are actually doing is belittling the difficulties that you face on a daily basis. Also, in that person’s eyes it puts you above other autistic people (such as those who do wear protective head gear) because you can pass for ‘normal’ and they can’t.

Here’s the thing..

I don’t consider myself to be better (or less) than any other autistic person.

I don’t consider myself better (or less) than any neurotypical person.

We are all human beings.

You’re obviously high-functioning.

If by high functioning you mean I can speak, dress myself, take myself to the toilet and do housework? Yes, I can do those things.. However, to me, the term ‘highly functioning’ implies that I can do things WAY better than the average person.

A super functioner?

Where’s my cape and tights?!

Super strength? FUNCTIONING.

The reality is that a good day requires a LOT of effort and some days I struggle to function at all. When I am overwhelmed, I stop functioning aside the very basics needed to keep my family and myself alive. I shut down. I can’t speak. I can’t read beyond a single sentence. I can’t complete simple tasks like washing the dishes or folding laundry. My brain buffers, then freezes and it can take days for it to unravel itself. I have to spend hours on my own in order for this to happen.

Last night, I was in bed for 7pm.

I’m 47!

Would you say this is functioning highly?

What’s 97865 multiplied by 98?

Why do some people assume that autistic people are math geniuses?  I can’t stand the motherfudging subject!

My dislike (bordering on the pathological) of mathematics started in 1975 with the words ‘add and take away’.

I’ve been hyperventilating ever since..

I can give you the answer, but I’ll need a calculator.

In contrast, The Boy could recite his entire 12 times table at the age of 4. He likes maths – the weirdo.

What medication do you take for it?

I don’t take medication for my autism because it’s NOT A FARKING ILLNESS!!

I do, however, take medication for migraines, arthritis and the general aches and pains which comes from being an old fart.

Autism is an excuse for bad behaviour.

Autistic people don’t choose to have meltdowns.

They don’t wake up and think, ‘You know what? I REALLY fancy losing my shit today. Toast, anyone?’

It’s not a nice feeling to lose control, whether it manifests outwardly or internally. It is a reaction to overwhelming situations and having to use up so much energy trying to survive in an overwhelming world.

It’s EXTREME ANXIETY, not bad behaviour.

My sister’s friend’s brother is autistic. You’re nothing like him.

Firstly, I don’t have the necessary parts to be like your sister’s friend’s brother.

Secondly, no two autistic people are the same – just as no two NT people are the same.

Autistic people have similarities but all have different abilities and strengths. That said, we do share one thing in common, which is that each and every one of us is FABULOUSLY AWESOME!

You’re married, can hold down a job, have children. How can you do these things if you’re autistic?

With a great deal of effort, cocker.

I drive as well! Fancy that? An autistic person being let loose on the roads. QUELLE HORREUR!

P.S 25 + years of driving. No points. No parking tickets.

I also manage to drive AND lick the windscreen at the same time.

You’ve just been sarcastic. YOU CAN’T BE AUTISTIC!!!!!

I do irony too.

You’re a person with autism. You should use first language.

I am autistic. I am an autistic person. My autism defines me otherwise I wouldn’t be me.

Here, I can only speak for myself as some autistic people wouldn’t thank you for calling them autistic. They would be up in your face faster than you can fart. Having said that, the majority of autistic people use the term ‘autistic person’.

Incidentally, I saw a Facebook thread where the parent of an autistic teenager was having a mini-rant about people using the word ‘Aspie’ because it’s insulting, apparently.

The fact is that most people with Aspergers, refer to themselves as an Aspie.

I refer to myself as an Aspie but primarily I am an autistic person.

 

You can look me in the eye. You can’t be autistic!

Technically, I’m looking above your pupil but it’s such a subtle thing, you’re unlikely to be aware of it. As a child, I spent hours standing in the corner at school for being ‘rude’ and not looking at the teacher. I wasn’t EVER being rude. It distressed me to look people in the eye, so, technically, I was abused by every teacher who ever punished me for not doing it.

It’s taken decades for me to be able to maintain eye contact with people other than my immediate family and even now, when I am anxious, I will spend more time looking at your feet than your face. I have to remind myself to look up occasionally.

Yes, I can look you in the eye – sort of – and I am autistic.

 

 

It’s The Freakiest Show..

My big brother was into the 1970s glam-rock scene, I mean, he had the platforms and everything.. He looked a div, but then what teenage boy didn’t look a div in the 70s?

For what’s it’s worth, I also looked a div – only I didn’t have any choice in the matter.

Anyway, it’s from rooting through his records that I came across the phenomenon that was David Bowie..

Being born in 1970 rendered me too young to appreciate the glam rock scene first time around. However, I didn’t have to wait too long because it made a comeback in the 80s with the likes of Def Leppard, Poison and Kiss – only with less glitter and more hair. Oh. And the flares were replaced by skin-tight, testicle-trapping jeans which of course helped them to reach those high notes..

WHOOOOOOOOO-YEAHHHHHHHHHHHH

Of all the records of the glam rock era, Life on Mars is my favourite.

Bowie labeled Life on Mars, “a sensitive young girl’s reaction to the media” and added, “I think she finds herself disappointed with reality… that although she’s living in the doldrums of reality, she’s being told that there’s a far greater life somewhere, and she’s bitterly disappointed that she doesn’t have access to it.”

I know how she feels..

Reality sucks. You spend nine months in the womb being prepared for your big entry into the world only to reach the age of five when you start school and your world turns phenomenally crap.

Yes, I know how that girl feels..

Life on Mars was released as a single in 1973. I was three years old and still wearing plastic pants. So it’s fair to say that while I no doubt heard it on the radio (or saw it on TOTP) I wasn’t into it until a few years later..

First, I fell in love with Mick Ronson’s orchestral arrangement because, lets face it, it’s EFFING AWESOME! Then came my obsession with the lyrics (also awesome) and all these years later, it STILL does things to me insides..

When it comes to the lyrics, the song is somewhat ambiguous but I identify with Bowie’s description because, like the girl, I am also at odds with reality. I see life as one big freak show.

Sailors fighting in the dance hall
Oh man, look at those cavemen go
It’s the freakiest show

Bowie started out ordinary enough, apart from his freaky eye, but Mrs Bowie knew that his image was a bit crap so she turned him into the spiky red awesomeness that was ‘Ziggy Stardust’. He made weird, cool, and all the misfits and weirdos whooped with joy and bought all his records. He was like something out of space – which was kind of the idea. Nobody knew what the fuck he was. Was he male, female or alien?

Bowie wasn’t my dad’s cup of tea, as I imagine was the case with a lot of other parents of the time. Dad’s nervous cough would kick in when Ziggy beamed up via the gogglebox during those early years but he settled down once Dave brought out Lets Dance and ‘that one he did with Jagger’, got the Dad stamp of approval too.

Bowie has been a constant in some form or other since Ziggy. I almost had a coronary when the TV series Life on Mars was screened in 2006. Great plot. The legend what is ‘The Gene Genie’ (Gene Hunt) and a cracking 1970s soundtrack, including Life on Mars which was used a LOT. What’s not to like?

For those of you unfamiliar with Life on Mars.. the plot is is that Sam Tyler has an accident in 2006 and wakes up in 1973 wearing flares and driving a Cortina. The tagline is, Am I mad, in a coma, or back in time? Whatever’s happened, it’s like I’ve landed on a different planet.

I just hope to God I never suffer a head trauma and wake up in 1983 wearing a ra-ra skirt and legwarmers!

So, if I had to choose ONE song to listen to before I die, it would be Life On Mars. I want my life force to ebb away to this song but knowing my luck, it will be Justin Bieber and I will die with my middle finger stuck up in mid-air.

There is something satisfyingly poetic about Mick Ronson’s melodic string arrangements to Life on Mars being the last piece of music I ever hear before I depart this shit-hole planet. I am the girl with the mousey hair, or at least I used to be before I started dyeing the crap out of it, and I very much want this to be my swansong. Family, take note.

Finally, a bit o’ trivia for you..

The string arrangement for Life on Mars was written in a TOILET.

Genius.

 

Dancing With Myself

 

I have memories of dancing around the living room as a child. Even though I was (and still am) disturbingly uncoordinated – the freedom of movement was liberating. It didn’t matter that I looked like a div because nobody could see me.

Thing is, I am profoundly affected by music. Sounds wanky? Fair enough. However, it is a scientific fact that humans are hardwired to respond to music. Music is important. I mean, can you imagine films without soundtracks? Imagine Renton legging it down the street in Trainspotting without Iggy Pop’s Lust For Life. Or how about Jaws without the ‘duuun dun duuun dun dun dun dun dun dun dun’? Of course not. Films would be shit without music.

Life would be shit without music.

The Notorious G.O.D once said, ‘Yo knuckle-dragging peeps, 55,000 years from now your ancestors will be stressed off their tits and up to their eyeballs in something called ‘debt’ but they will have Coldplay and Radiohead!

Music was always playing in our house so many of my memories are evoked by songs. For instance, when I hear Ella Fitzgerald, I see Mum standing in the kitchen – pinny on – preparing Sunday dinner and it’s like she’s still with me somehow..

Then, as teenager I went to a disco on Wednesday and Sunday nights.

YOU?!

Yes. ME!

Discos are usually avoided like the plague by the socially and sensory challenged. However, it was one of those situations where being social was a necessary evil if I wanted to experience music at a volume that would give my parents coronaries. You get this, right?

The routine was that I’d wake up on Wednesday morning (dry heaving) and I’d talk myself out of going. Then I’d get home from school – play my music – and it would give me a confidence injection. So I’d spend three hours faffing with my hair and troweling the make-up on and in the end I would look as far removed from me as I could be. Think actress and stage, rather than girl and disco..

Discos also meant BOYS.

I educated myself on how to be a girl and do boy/girl stuff because I was interested in boys, I just knew I couldn’t be myself or they would leg it faster than their Adidas trainers could carry them.

My research came in the form of teen magazines but the stories annoyed me because they were all ‘Wendy stared dreamily at Lee but he didn’t know she even existed. How could she get him to notice her?’. After a few pages of cringeworthy crap, Wendy gets a makeover at her mate’s house and Lee suddenly acknowledges her existence by snogging her in a graffiti filled bus stop which smells like a urinal. The end.

All this seemed ridiculous to me but apparently this was what was expected of girls if they wanted to attract boys? I did manage to attract a few boys because I remember kissing a random teenage lad to The Power of Love – Frankie Goes To Hollywood’s version. I don’t even think I knew his name before I started attacking his tonsils. Another lad (WHO WORE WHITE SLIP-ON SHOES FFS) bought me a Coke and I snogged him as a way of thanks. Snogging didn’t involve talking, you see. I understand that other female Aspies might identify with this?

Music was a drug to me and I needed my weekly fix of this ‘sound experience’. That’s an experience of sound – not Scouse lingo.

I was a disco junkie.

Sort of.

Because it wasn’t about the socialising. Nor did I need alcohol (not that they served it anyway being an under 18s disco) because I got my high from the bass sound which vibrated in my body. The anomaly is that loud noise usually affects me adversely. I cover my ears if a police car goes past. Loud music though? TURN IT UP!

Perhaps it’s no surprise that I have to wear a hearing aid now?

Anyway, combined with the lights (which fascinated me) I’d have been in heaven if it wasn’t for the other humans. My perfect disco? Just me, the music and lights. You can bugger the DJ right off too. I’ll pick my own tunes. Maybe that’s what my heaven will be? My own personal discotheque and yes, I AM old enough to remember the word, ‘discotheque’.

Spear of Destiny’s Liberator (Indie Rock) was played with full strobe light effects and I’d stand there with my mouth hanging open as if a UFO had just landed in the middle of the dance floor. Another anomaly is that, normally, lights affect me – especially fluorescent – but I LOVED THE STROBE! Couldn’t cope with it now (migraines) but in those days it just hyped me up with a similar effect as when you used to give kids E numbers..

The other thing about Liberator was that on hearing the intro, people would literally skid onto the dance floor and start jumping up and down like lunatics. You didn’t dance to Liberator. You shrugged your shoulders aggressively or swung your handbag round your head like a lasso. Plus, being in close proximity to other people meant you were always bumping into someone, like when I bumped into an older girl and demolished her glass of Coke. WHOOPS! Her mates helpfully inquired whether or not she was going to kick my face in?

‘I’M GOING TO KNOCK YOU OUT, COW!’, the girl informed me (aggressively) before flicking me the V sign.

She was probably all frosted lipstick and no action but I wasn’t in the mood to find out, so I legged it to the toilets as fast as my 6″ sling-backs would allow me..

At the end of the night, saliva would be swapped along with phone numbers. The lights would go on and the bouncers would start herding us towards the exits. To me, it was always a massive anti-climax to see the room devoid of it’s magic because the reality was that the dance floor was strewn with broken glass and fag-ends and it looked crap. It was like going to bed with Sean Bean and waking up with Worzel Gummidge. 😦

Once I got married and had children – going to a disco became a rarity. As life put more pressures on me, I became more and more unable to cope with social situations of any kind, let alone discos. I couldn’t recreate those years where the music would override my issues, so I stopped going. Once I was on my own, I would draw the curtains, put a record on and dance, or at least, my interpretation of dancing. Why do you think I drew the curtains?

I don’t remember exactly when I stopped dancing. I just know that I did. And now my bones are buggered so throwing myself around the living room is no longer an option. Not with my arthritis, dears. However, music is (and always will be) in my soul and the day I am no longer moved by it will be the day that I go to that great disco in the sky where the music never ends and God is a DJ.

That’s a reference to a song, by the way.

Until then, as Shannon once said, “Let the music play”.

“Ah, music,” he said, wiping his eyes. “A magic beyond all we do here!” ~ Dumbledore ~ Harry Potter & The Philosophers Stone