Diagnosis/Self Awareness – How Does That Affect Masking?#TakeTheMaskOff

 

Until the age of five, I didn’t mask. There was no need to. I was free to exist in my little world without fear of ridicule. I was happy with who I was. Then one day my mother took me to a strange place. This place was loud and scary and had lots of other children in it. It was a sensory nightmare.

My mother stayed with me for a while, then she got up to leave. I remember trying to leave with her, but she told me that I had to stay there. So I did what many children do on their first day of school – I cried.

The teacher sat me on her knee, but it didn’t comfort me because I didn’t like the closeness of her. She was a stranger invading my personal space, but I couldn’t move. I couldn’t speak. I couldn’t do anything to change the situation. A bell rang (loudly) and we were told to go outside where it was hot and the noise was deafening. It hurt my ears. I mean really. I didn’t know what I was supposed to do, so I just stood in the middle of the playground trying (and failing) to process the sensory stimulus that was threatening to overwhelm me.

That was the first time I remember experiencing loss of control.

At that moment, a girl walked up to me. I thought she was going to talk to me. Maybe offer me some friendliness? But she didn’t say a word. Instead, she looked at me as if I was something particularly nasty. Like shit? Then she pinched me hard on the arm.

Whatever I was expecting it wasn’t that.

To the onlooker, it must have looked like I didn’t react at all, but inside of me all hell was breaking loose.

I stared at my shoes while my brain went into overdrive.

I remember wanting to run off home to be with the family who loved me unconditionally and the invisible friends who understood me.

I also remember that nobody came to help me.

Nobody.

How could nobody have seen this?

And why had my mother left me in this horrible place?

At the end of that first day of school, I went to collect my coat, but there was something else on my peg – a mask. I placed it over my face and I wasn’t me anymore.

I wore it for the next forty-one years.

In my forties I became ill. The mask had been slowly suffocating me and now I was struggling to breathe – to live.

During this time I saw a doctor who saw beyond my anxiety. He sent me to see a psychiatrist who sent me for an autism assessment.

Nine months later, I was formally diagnosed as autistic.

First there was relief. Then came the grief – not for being autistic, but for all the time I’d lost trying to be something I’m not and can never be. I grieved for the fearful child that I’d been, the troubled teenager I became and the adult who masked so much that she lost her own identity!

In the beginning, masking is helpful because it provides a way to fit in with everybody else, but over time the mask gets heavier because you lose energy and strength. The mask starts to suffocate you. But you’ve worn it for so long you don’t know how to take it off. Then, life has a way of forcing change upon you and it often comes in the form of mental illness.

Mental illness shrinks you. Literally, in my case. My clothes became loose. My skin lost it’s elasticity. My mask came loose. In the end, it came away with no effort at all, but it was because I was ill. I thought I would feel vulnerable without it, but mental illness takes you to the darkest place you could imagine. A place you NEVER want to be again. I would rather take on the world in it’s full judgemental glory than go back there!

I masked because the world didn’t want the real me and I needed to try and be like everyone else to survive. Being me wasn’t an option – certainly not when I was school in the 70s and early 80’s. It also meant that I flew under the autism radar.

Masking delays diagnosis. Boys are diagnosed a lot earlier because they are generally crap at masking. The example I can give is of my son and myself. My son doesn’t mask and he was diagnosed at 4 years old. I have masked for the majority of my life and I was diagnosed at 46 years old.

Since my breakdown and subsequent diagnosis, I no longer care what people think of me. I get to be me, now.

Epilogue

I walk out into the middle of the infant school playground towards the smaller version of me.

She looks lost, awkward and out-of-place.

She’s hurting, but nobody knows it.

I gently take her hand and whisper, ‘Don’t worry. I’ve got you now’.

We walk past the girl who is responsible for the bright red mark on my younger self’s arm.

We could use the law of retaliation and give the little bitch an eye for an eye, but this is about healing, not revenge.

So we place the girl’s image into an imaginary balloon and let it float up into the sky.

Then we walk off into the cloakroom where a solitary coat is hanging on its peg.

I remove the coat and replace it with a well-worn mask.

We don’t need it anymore.

We’re free.

Preparing My Autistic Child For Life Without Me

 

I lie awake at nights worrying about many things. Things such as money. Have I put the bins out? Some cow who wronged me in 1985. You know? Life. Plus, a few thoughts that I’m not willing to publicize. *coughs*.

One of my fears is a really BIG one.

It’s the fear that one day I will have to leave my autistic son.

Leave, as in die.

I worry about being dead because I know that I will no longer be able to look out for my son and that puts the shits up me worse than anything in this entire world!

The thing is: I’m middle-aged (*weeps*) and my body is starting to let me down, so, naturally I’m becoming aware of my own mortality. This wouldn’t be as much of a problem if I didn’t have a young son who is dependent on me.

Well, it’s your fault for having him late then!

WHOA THERE! I was 38 when I had my son and lots of women give birth well into their 40s nowadays. Plus, I was relatively fit and healthy. Quite simply. I gave birth and my ovaries threw in the towel and it’s pretty much been downhill ever since..

I have two other wonderful sons, but they are grown up and living their lives. I worry about them, of course I do. Most mothers never stop worrying about their children, right? However, they are independent and stopped needing me a long time ago. My job is done. They can change my big girl nappies when I start soiling myself, right boys?

The Boy is different because he’s autistic and here’s where the problem lies – not because he is autistic – but because I am also autistic and I know how hard it is to live in a world that doesn’t understand you.. While I am alive (and compos mentos mentis) I’m here to fight his corner and I have already had a one person cautioned by the police for intimidating my son.

“There’s no bitch on earth like a mother frightened for her kids.”~ Stephen King

If that makes me a bitch? Fine.

I am preparing The Boy for independence. Just how independent his life will be is unclear as he’s still only eight years old, but I know I must push him and put him into situations that will push his boundaries. If I don’t, his world will be very small. The difference is that, being autistic, I know when to push and when to ‘ease off the gas’, as it were.

I also know when to change things that are no longer working..

One such thing is mainstream education. This last year, it’s become a struggle for The Boy, despite full one to one support and the best efforts of all involved. The problem is with the mainstream system, not the school itself. So he is being transferred from mainstream to a specialist school where he will be with other autistic children. Alongside the usual curriculum, he will be taught essential life skills in a controlled and safe environment. In mainstream this wouldn’t happen as the emphasis is on education, not life skills.

The school has 70 pupils ranging from 8 to 18 with class sizes no bigger than 6. In comparison to his mainstream class of over 30 children! So, this should help to lower his anxiety. It’s a fantastic opportunity for him and one which, thankfully, we didn’t have to fight for as it was the only viable option for him. If he was to remain in mainstream, he would have most certainly failed like I did and I can’t allow that to happen. What kind of parent would I be if I did? Nor could I rule out mainstream from the onset. My experience in mainstream was mega shit, but I didn’t want it to cloud my judgment regarding him. The difference is that The Boy has been happy whereas I wasn’t happy. Ever.

As positive as this is, it’s going to be a big change for all of us.

I will no longer walk him to school. He will use the transport provided by the school. Independence wise, It’s a massive step. If he were to remain in mainstream, there’s no way I could allow him to walk to school alone as some of the older children do because he’s too lost in his inner world to be aware of the dangers around him. He’d also copy the knobends who walk across school crossings when the red man is showing. What kind of example to kids is that?!

I want my son to live a full and happy life. I love him, so I have to start letting him go because the job of a loving mother is to let her children go. Even children with severe learning difficulties need a level of independence from their parents – even if it’s just for a few hours a day.

It would be easy to protect The Boy from the world and wrap him in cotton wool, but I would be failing him as his mother. Being too afraid to leave his own four walls because he’s stricken with anxiety or depression is no life at all and I speak from experience here. I grew up undiagnosed with no support and I’ve struggled EVERY step of the way.

I know I won’t be around for ever, so I must prepare him for that eventuality.

The Boy is limited by his diagnosis, but it was vital in order for him to access the support he needs. However, as things stand today he would be refused jobs simply because he’s autistic. Hopefully attitudes will have changed and companies will understand the value of autistic employees in the workplace by the time he is ready to enter the world of employment.

So, in a few weeks The Boy will start a new chapter in his life. I will stand outside our house as he gets onto the school bus and I will wave him off with faked enthusiasm – not because I don’t care, but because I care too much. I will have to call on ALL my acting skills to suppress my overwhelming emotions. As soon as the bus is out of sight I will probably go inside and drop-kick a cushion to the floor. Then I will collapse on it in a flood of tears..

My boy won’t be five minutes around the corner anymore. I won’t be able to walk past the school and wonder what he’s doing. It freaks me out just writing about it. I know I will struggle in those first few months. I will worry how he’s doing? If he’s happy? If I’ve done the right thing? Then I will remind myself that I am a mother. This is my job. His brothers are living their lives and I owe it to The Boy to give him the tools to be as independent and happy as they are.

The Boy is more than my son. He is a human being in his own right and a beautiful one at that. He shines as special children do. I want him to understand the positives of living inside the rainbow, because autism isn’t the tragedy that people imagine it to be. The tragedy is in the ignorance of people who don’t understand autism.

So, on with the journey.

 

 

 

 

 

 

 

 

Autism: When Awards Can Be A Negative Thing…

There was recently a thread on Twitter started by Claire Ryan who tweeted:

“When is giving a child an award at school, not an award at all?” – along with this excerpt about an autistic boy called Jack.

Jack reported being anxious recently in assembly as school were giving out awards. He would sit thinking ‘don’t pick me’. When he was picked he was very anxious and worried about which way to walk to the front of the hall with all people watching him. Jack was able to describe how this made him feel saying “my bones were dust..my brain was mush..if I could curl up into a ball and fall into a hole 50 feet deep”

A thought provoking tweet which stirred up memories of sitting in the school hall DREADING being given an award because of having to walk up to the front to receive it. You could bet your dinner money that somebody would stick their foot out on route to ramp up the humiliation factor and when you crave invisibility this is the LAST thing that you want.

My infants school had a ‘star’ system where children were awarded gold and silver stars for good work/behaviour. We also had black stars, which are sort of self-explanatory. Nobody wanted one of those. I liked the gold and silver stars because they were aesthetically pleasing. I like shiny stuff. What can I say? Maybe I was a cat in a past life. However, I did NOT like going up to the front of the class to receive one because it meant that everybody would look at me so I deliberately underachieved in my favourite subjects in order to avoid it..

For example, I purposely made myself read slower in order to avoid going to the teacher to get a new book. It seemed like I was below average but in actual fact I was an early self-taught reader who could easily read an entire book in a couple of hours at home. I was also reading books way beyond my age group but as far as the school was concerned, I was slow.

Despite my avoidance strategies, I would sometimes forget myself like when I ran a 100 meter sprint in the school sports. I didn’t realise how fast I could run and to everybody’s surprise, including my own, I won the race.

So, there I was, face down on the grass (dying) when I got an overpowering whiff of Paco Rabanne. This could only mean that my class teacher (and head of sports) was close by and sure enough he was standing over me with his mirrored sunglasses on looking like something out of Top Gun.

Actually, this anecdote story predates Top Gun but you get my drift?

He grinned at me.

Temporarily blinded by the glare off his whitened teeth, I gasped ‘Alright Sir?’

‘Well done young lady!’ *pats me on the back but I’m highly-sensitive so it feels more like a thump*

Then came the kick in the metaphorical flaps.

You’re in the athletics team and practice starts Thursday after school.

Shit. Shit. SHIT!!

Didn’t say shit, obvs.

Instead of feeling euphoric as I imagine most other children would – I felt sick to my stomach.

I didn’t want to be in the school team.

I didn’t even like sports except for watching football and Wimbledon. Plus, I did enough nervous sweating at school without having to work one up in my own time. The problem was that I couldn’t verbalise my feelings. I didn’t understand that I could have said no so I found myself turning up for athletics practice and the next thing I knew I was on a noisy coach bound for the local athletics stadium. Can you imagine how sensory that was? I was that anxious, I forgot how to hand the baton over for the relay race. That occasion was for town. Next came running for my county – by which time I was totally stressed out and visibly so. My mum asked me why I was doing it if it made me so unhappy? So I simply stopped turning up. Needless to say, Sir wasn’t pleased.

I don’t hold a grudge. How can I? He had no idea what was going on inside my body and mind as I wasn’t able to verbalise any of it. I suppose from his point of view it just looked like I was messing him about? He misunderstood me but then being misunderstood has been the story of my life.

Then there was the time when I got 98% in my history mock exam..

Teacher read out our scores. She read everyone’s name out except mine. That’s when I started to feel sick because I figured that I had either done exceptionally shit or exceptionally well.

Either way, it wasn’t good.

She read my name (and score) out and looked pleased for me. What she didn’t understand was that it reminded the class dickheads that I was there and that it had been a few minutes since they’d thrown something at my head. Needless to say, any sense of pride was obliterated by the feeling of wanting to die.

That 50ft hole that Jack described? I know it well.

I underachieved on purpose and the main reason was that achievement equaled anxiety.

The majority of replies that came from #ActuallyAutistic people (including myself) were that receiving awards causes distress and anxiety.

This isn’t to say that autistic people don’t want awards. Most people appreciate recognition when they have worked hard on something. It’s the social aspect of it that is the problem. For me, opening my book and seeing a gold star would have made me happy. It would have been enough. Having to face the entire class took the pleasure away and turned it into something very unpleasant. Just as being picked for the athletics team took away my pleasure of winning. For a child to purposely underachieve has a detrimental effect on their present and their future. No doubt Jack’s teacher meant well but despite their good intentions, the child was distressed.

It’s impossible to get things right every time but when teachers get it wrong they really need to learn from it.

The Boy likes to get rewards at school but he doesn’t like going into assembly to receive them. On a VERY good day he will go and get his award but will have to leave immediately. It’s all about gauging how anxious he is and if he is up for it or not on that particular day.

    • The thing with autism is that normal rules don’t apply.
    • Each child is different with individual needs.
    • Some autistic children are unable to verbalise their feelings.
    • An autistic child might be able do something one day but will struggle with same task the next.

To clarify. Autistic children like to feel a sense of achievement but how the recognition of that achievement is undertaken must be carefully thought out or irreparable damage could be done.

Teachers, take note.

Back in Time: The 1980s

We had it all in the 80s..

Goodish music, cool films, strikes, threats of nuclear war, creepy DJs and legwarmers.

It was also one of those rare occasions when we won the Eurovision.

What? No! It had NOTHING to do with skirts coming off!

A lot has changed in the last 38 years since the start of that decade. Technology has gone STRATOSPHERIC and I have no idea what’s happening anymore..

So, how about a few comparisons between then and now?

TV

Now. There are about, ooh, a million TV channels to choose from? Yet you can still spend half an hour flicking through to find there is NOTHING on. I literally spent AGES flicking through all the channels last night and I ended up watching Fawlty Towers which was made sometime during the middle-ages. ‘Flowery Twats’ may be un-pc these days but it’s still hilariously funny.

Basil to his car: Start, you vicious bastard. Oh my God. I’m warning you, if you don’t start… I’ll count to three. 1, 2, 3, right, that does it. I’m going to give you a damn good thrashing.

They really don’t make them as good as this anymore..

Then. We had THREE channels at the start of the 80s. BBC One. BBC Two and ITV. Channel Four was launched in 1982 so that made a grand total of FOUR channels to choose from. Channel Four was a God send for us teenagers with programmes like The Tube and Brookside. I mean, who can forget ‘Debbie and Damon’? De Romeo and Juliet of der Pewl, eh?

‘Come here boy! It’s been five minutes since I gave somebody a damn good thrashing!’

DISCIPLINE

NOW. “Oh yeah? What are you going to do about it, Sir. I’ll have you arrested, Sir. You’ll be somebody’s bitch in prison, Sir!”

Discipline in secondary school consists of after-school detentions, confiscations, isolation and exclusion. When it became illegal to thrash kids, teachers had to get creative – not to mention medicated. However, it’s my understanding that teachers still have the right to use necessary force pupils in certain situations like if they are going to harm themselves or others?

THEN. In my day you got thrashed with a big fuck off stick and I’ve seen numerous blackboard rubbers hurtling across classrooms aimed at somebody’s head. It’s a wonder there weren’t fatalities. Maybe there were? Come to think of it, pupils were prone to disappearing from time to time. Was it truancy? Or were they concussed in A & E?

The glory years of corporal punishment came to an end in 1987 (two years after I left) though private schools carried on thrashing until 1999. In this instance, I think that 2018 wins because there should never have been a place in society for hitting children.

NUCLEAR WAR

NOW. There’s probably have a game about it on X Box featuring zombies. Also, President Trump likes to have ‘my nukes are bigger than yours’ competitions with anybody who takes the piss out of his hair/face/tan/hands/leadership.

I’d say this gives some cause for concern..

THEN. In 1983 there were two close calls. ACTUAL danger of ANNIHILATION due to a tiff between the Russia and America. A generation of kids and their parents properly shat themselves worrying over this. Parents were stock piling tins of beans so in the event of nuclear war we could fart ourselves into comas. Thankfully it didn’t happen but it gave Frankie Goes To Hollywood some inspiration for their number one hit, Two Tribes.

Remember this?

“The air attack warning sounds like
This is the sound.

When you hear the air attack warning
You and your family must take cover.”

Magzilla
19 September 1983

PSYCHOTIC FEMALE PRIME MINISTERS

NOW. People think Theresa May is bad?

THEN. She’s aint a patch on our pearl wearing overlord!

Margaret Thatcher (or “that woman” as my Labourite father called her) ruled as PM throughout the entirety of the 80s. This was the woman who a few years earlier (as Secretary of State for Education) abolished free milk for schoolchildren. Also, she and her popular (not) Poll Tax was responsible for the worst riots in Britain. Thatcher was possibly one of the most hated women ever. Certainly wasn’t popular in our house. In my opinion, Thatcher makes Theresa May look like Jar Jar Binks – only in leopard print kitten heels.

LEGO

NOW. Parents have to take out a second mortgage so their kid can have the Star Wars Millennium Falcon? I am STAGGERED at the price of Lego these days! I want to buy a kit, not the company!

THEN. One board, some bricks and you considered yourself lucky.

PHONES

Now. I’ve yet to clap eyes on a young person who isn’t attached to their mobile phone via an umbilical cord. You see them slumped over their phones in McDonald’s – Diet Coke in one hand – mobile phone in the other.

ALL of them on their phones.

NOBODY speaking.

Are they all sat texting each other?

It’s possible.

Then. While mobile phones existed in the 80s – they were the size of a shopping trolley and cost a fortune so us peasants had to make do with landline phones or public phone-boxes. You know, the red ones that reeked of fags and wee?

‘Blocking’ was when irate parents fixed an actual lock on the phone after receiving a bill of EPIC proportions – £40 in 80s money and about £160 in today’s. This usually included a few months of being grounded. Early parole was usually granted because parents couldn’t cope with having stroppy teenagers under their feet being all hormonal and horrible.

MUSIC

Now. Auto-tuned, shit sampled crap with pornographic videos and lyrics that would give your nan a coronary.

Truffle butter? Do yourself a favour and don’t Google it.

You Googled it dintcha?

Certainly puts Madonna and her pointy bra into place, eh?

Then. Sexuality has played a part in music for decades. Elvis was thrusting his pelvis at teenage girls in the 50s and in those days it was shocking. In 1978 Olivia Newton John was prim and proper as Sandy in Grease – three years later she was wanting to get ‘physical’ with blokes in a gym and I don’t think she meant half an hour on the treadmill! NOT that I knew what it was really about then because I used to pull on my legwarmers and go round the house singing..

You gotta know that you’re bringin’ out
The animal in me,
Lets get physical, physical, I wanna get physicaaaaaal…

Highly appropriate when you’re eleven years old, no?

THE SELFIE

Now. According to University of Florida’s Eunice Kim and colleagues in a September 2016 paper, there are 93 million selfie postings every day! That’s a LOT of duckface!

Then. Selfies aren’t a new creation, I mean, what’s the difference between a self-portrait and a selfie? It’s still a picture of YOURSELF, right? People have been using cameras to take picture of themselves for decades, it’s just that it’s so much easier now. In my day if you wanted to take a picture of yourself it involved much faffing and possible blindness when the flash went off in your face. Plus we were working with actual film so posing your way through a gazillion shots was NOT an option.

The 80s were my teenage years and I am part of the generation before technology went supersonic. Sadly, teens won’t ever experience that kind of simplicity again unless it’s part of some historical experiment to show how we used to live..

Fast forward 38 years and we live in a technological world where we communicate more with strangers than we do our own families. For autistic people like me, social media helps us to socialise because we are generally crap at it in person. That said, social media is good in small doses because it can easily become overwhelming. Life is too technological for our brains to cope with and as a result our mental health suffers and we have to take social media and, in my case – technology in general – breaks.

I have mixed emotions about the 1980s. Happy because it was the decade where I became a mother. Sad/angry/scarred because I was bullied by twats. Despite this – the frankly criminal fashions and Agagdoo do do push pineapple shake the tree – the 1980s was simplistic in comparison to today.

For me, THE best decade was the one that preceded it. Yes readers, hold onto your goddamn flares because next time I’ll be hauling you back to the 70s!

 

All images are public domain

Margaret Thatcher

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 FUCKING 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

 

 

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..

Mum ~ Circa 1975

As a 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