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: The Pretender

I’ve always known I am different, but for most of my life I haven’t known why.

I’ve had to suppress the real me and try to be like everyone else in order to try and fit in.

Masking. Mimicking. Copying. Pretending. Camouflaging. Whatever you call it – it all amounts to the same thing: Survival.

The cost of trying to fit in is high as many autistic people succumb to physical and mental exhaustion at some point in their lives. Like me. I burned out at 46 years of age.

The moment we leave the security of our homes we become somebody else in order to survive.

We are performers.

So much for autistic people not being able to act, eh?

As well as mimicking my peers, I took inspiration from characters in books and TV. Sometimes it was hard to know where the characters ended and I began. I remember asking my mirror reflection, ‘Who are you?’

Forty years later, I was diagnosed autistic.

Finally. I knew who I was.

Make-up has always been a tool in my ‘how to survive life’ box. Like clowns who hide their true identity behind over-sized clothes and painted on smiles, I tried to hide my ‘weirdness’ behind eye-liner and a layer of foundation thick enough to plaster walls. I’d seen how make-up changed my mother’s face so I experimented on my own and suddenly I didn’t look like me anymore, and if I didn’t look like me, then surely it would be easier to pass off being like all the other girls and, just maybe, they’d like me?

Er, no.

I wore eye-liner at first, but Dad went paternal on me and made me sponge it off. He didn’t understand my reasons for wearing it. How could he? He was a ‘man’s man’ and he just wanted me to stay a little girl as long as possible. It’s understandable, I guess.

Girls my age were wearing make-up – the difference with me was that make-up put a barrier between me and them – at the same time allowing me to blend in a little better. It was psychological because in reality I was still different. I just looked more feminine..

“My dad used to say makeup was a shallow girl’s sport, but it’s not. It’s armor.”~ Courtney Summers – All The Rage

For me, make-up wasn’t about beauty or fashion. It was about protection. Just as a riot cop would never go into an affray without their helmet on, I would never go out without my ‘mask’ on because I would feel vulnerable and exposed.

It was about pretence.

“Costumes and makeup play an important role in the drama, character creation.”

I have reinvented myself more times than Madonna, only with less success. And money.

Is it any wonder I burned out?

Since my diagnosis there have been changes. I feel different. Lighter. Less tolerant of people’s crap. I’ve found that the word, ‘no’ comes a lot easier these days.

I’m a long way from being make-up free as some habits are hard to break. Plus, I look bloody horrifying without it, but the mask is slowly falling and hopefully one day I will wear make-up simply because I want to – not because I need to.

So, what’s changed?

I accept myself for who I am. Also, I’m knackered from decades of trying to hide who I am in order to fit in and for what?

I GOT BULLIED ANYWAY.

Bullied. Ostracized . Whatever. It’s basically human beings exploiting vulnerability instead of offering protection and support.

I’d hazard a guess that most autistic people have encountered bullies at some point in their lives?

Bullies are cowards. Bullies are not stupid enough to abuse people bigger or stronger than themselves. They dominate those who are different in order to boost their own self-esteem and there lies the problem: Bullies actually have low self-esteem.

While I am new to knowing I’m autistic – I have always been autistic and I’ve been feeling resentful towards the people who have let me down over my life. However, resentment will only harm me, not them. That said, I feel more in control of my life than I have ever been. This is why the mask is starting to fall because I no longer need to hide. For what’s left of my life, I will embrace being autistic because it’s who I am. Some people say their autism will never define them but I don’t feel that way. If I wasn’t autistic, I wouldn’t be me.

Being autistic explains everything. Every moment of my life. People think I struggle because I’m autistic, but that’s not true. I struggle with an overwhelming (and confusing) world and I struggle with people.

People are a major problem.

I’ve floundered about from one self-help book to another trying to ‘find’ myself and only when I had my third child did I finally get my answer because he was diagnosed autistic. I have so much to thank him for because without him I would still be struggling with my identity. I’m not sorry that I’ve passed my autistic genes onto him because he’s the happiest little boy I know. He does NOT suffer. He’s NOT a burden. He requires NO CURE. However, I’m am sorry that the world still has a long way to go when it comes to understanding him.

Not so long ago, the school asked him to name things he liked about himself and do you know what my beautiful autistic son said?

“I LIKE BEING ME.”

Will I ever be able to say that about myself?

Lets just say that I’m working on it. Yesterday, I left off the eye-liner AND eye-shadow and I went out into the world. Maybe to most women, that isn’t a big deal, but to me it’s HUMONGOUS because it means that the mask is slowly coming off.

I’m also growing my hair-dye out. This is a challenging process as I need things to be visually ‘right’ and the mad badger look isn’t exactly flattering. However, I choose to think of it as a transformation from my old (and confused self) to who I am now and with each inch of silver hair, I can see the real me emerging. Like a butterfly, no?

Sounds wanky, but it stops me from reaching for the box of hair dye that’s in the cupboard..

For most of my life, I have been a pretender – always trying to be someone else because I thought that I wasn’t good enough.

I AM good enough.

I always have been.

Wanting to be someone else is a waste of who you are ~ Kurt Cobain

Image Via Pixabay

 

 

 

 

 

 

 

 

 

 

 

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

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

 

 

 

 

 

 

 

Five Reasons I Hate Snow

 

1~ It’s cold.

Snow can be cold. The kind of cold that strikes through to the bones and freezes your snot. People say that children don’t feel the cold but they obviously never met the likes of me. Soggy mittens were never my idea of fun, people, hence I generally ‘enjoyed’ the snow from the warmth of the dining room window. That said, there have been moments in my menopausal journey where I would have given my right nip to be able to shove my face in a snowdrift..

2~ Aesthetics

There is something quite beautiful about fresh snowfall. I always marvel at the white blanket that magically transforms even the shittest of places.

Then humans and animals ruin it all.

First come the size 14 boot prints of the milkman.

Then, come the patches of yellow snow..

There is nothing remotely picturesque about a snow filled garden when you have dogs. Even less when it’s a small yard.

Then there is the joyous act of cleaning up after your four-legged friend has taken a dump in the snow..

Never had the pleasure of digging out a dog turd from 8 inches of snow?

You’ve never lived!

*snorts*

Lets not forget the lazy-arsed owners who genuinely believe that their dog’s excrement will dissolve in the snow so there’s no need to get that poo bag out eh?

What actually happens is that once the snow has melted – the pavements are smeared with poo which gets on everybody’s shoes and into their homes. Incidentally, these are the same breed of dog owners who believe that slinging shit bags into trees makes them inconspicuous.

*double snort*

3~ Driving

The problem with this country is that we are never prepared for wintry conditions. Our cars suddenly turn into Torvill and Dean – only less graceful.

To be fair, it’s the scariest thing to find yourself sliding down the road with absolutely no control whatsoever. I’ve had a few ‘squeaky bottom’ moments in my time so I avoid driving in the stuff whenever possible. However, I still get anxiety from watching other drivers sliding perilously close to my car as their back wheels have a mental breakdown.

Note to self: Next house must have a driveway.

4~ Snowballs (and other bodily parts)

No matter where you are or who you are with, at some point some idiot will throw compacted snow in your face and fall about laughing. For some reason, this is considered normal behaviour? But if I was to fast-spin a cricket ball at them, I’d be hand-cuffed and trundled off to the police cells.

*throws hands up in the air*

Then there are the snow-people complete with balls and boobs..

Nothing says Christmas quite like the sight of a snowman with a massive set of knackers on the front lawn, eh?

5~ It’s Slippy

As I’ve got older, there is another reason why I hate snow and ice.

It’s slippy.

The problem is that I have Osteopenia.

Osteopenia? Isn’t that a film about mods?

No, that’s Quadrophenia.

Osteopenia is the pre-curser to Osteoporosis. In other words – thinning bones. This means that I am more likely to break a bone should I fall over. Even a minor fall could have serious consequences. *serious face*

This is monumentally crap because I’m only 47 but it is what it is and all I can do is protect myself as much as I possibly can. So I fit contraptions to my boots (cleats) to stop me falling over and they do work. I am the ONLY parent on the school run who wears them. However, the well-being of my bones trumps dignity, no?

Note to self and other snow grip users: Do NOT attempt to walk on a tiled floor with your ‘cleats’ on. You’ll be on your arse faster than you can say Bolero!

Then there are the women who wear high heels when the pavements are blatantly icy. What’s more is that they manage to stay vertical! There’s me taking tentative steps despite the protection of my grips and they overtake me wearing stilettos as if they didn’t get the memo that it has snowed!

Witchcraft?

One theory is that the heels act like little ice-picks so maybe there is some method in this madness?

Even so. I think I’ll stick to my flat heeled boots and snow grips, ta very much. I’d rather look like Nanook of the North than end up sprawled on the pavement with a busted hip.

So, there are my five reasons why I hate snow.

Let it snow, let it snow, let it NOOOOOO!!!

I rode on a plane a couple years ago with Snow Patrol and didn’t know who the hell they were. They said they were big fans of mine and were playing Madison Square Garden. And they let me listen to one of their records on their iPod. I started to weep. ~ Neil Sedaka

 

 

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

 

 

 

 

 

 

 

 

 

 

 

Late Autistic Diagnosis.

A lot of people suspect they are autistic but don’t know whether to go for the formal diagnosis or not. Many are happy to remain undiagnosed whereas others, like me, need validation.

Am I Really Autistic?

Chances are you know you’re autistic.

I knew as soon as my son was assessed four years ago..

I went home and read as many female Asperger books as I could and then did the full tears/snot thing because within those pages were women JUST LIKE ME!

My oddities take up four pieces of A4 paper but the bottom line for me was the feeling that has plagued me ALL my life and that’s the feeling of not belonging to this planet. We’re not on the same wavelength, the planet and me. More so, I don’t understand most of it’s human inhabitants..

The Benefits of Diagnosis

  • It can help you and your family understand why you’re a weird sod.
  • You may get access to benefits and support services.
  • Your employer, should you choose to disclose, has to make reasonable adjustments.
  • You can grow old and not worry about being forced to play bingo in Shady Pines oldies home.
  • You can be part of a community that understands YOU.

How To Go About Getting A Diagnosis

The first step is to speak to your GP.

This didn’t happen with me because, well, I’m awkward.

I’d already made up my mind to go and see my GP to ask for a referral when my anxiety worsened considerably and getting myself better took priority over everything else. However, in July I ended up at A&E with a panic attack. The doctor (an angel in human form) suggested I saw the hospital psychiatrist who spoke to me for about an hour and the result was that she referred me for an autism assessment. It wasn’t the usual route to assessment but for me it was a case of right place, right time.

So, go see your GP.

  • Only talk about the autism, not the boil on your bum.
  • Take in some notes if it helps you.
  • Tell them why you think you are autistic.
  • Explain why a diagnosis would benefit you.
  • Give brief examples of your struggles.
  • Allow the mask to fall because this is one occasion where it’s beneficial to be yourself.

Do your homework before you go in and find out about your local services. Maybe phone up the National Autistic Society helpline and speak to an advisor or if, like me, you are a phone-phobe, you can ask somebody to do it on your behalf?

Some GPs don’t know autism from their armpit but don’t let that put you off. Go in there armed with your info and Guidance For GPs  and bamboozle them with your knowledge. Don’t be fobbed off and if necessary see another GP.

When I had my assessment my anxiety was MASSIVE which was explained to the psychologist. Anxiety amplifies the communication and sensory issues and when I went back for the diagnosis I could barely speak and my eye contact was abysmal. I had to remind myself to look in the psychologist’s direction every now and then. Hopefully when I go back for my follow up appointment the anxiety will have subsided enough for me to engage and get something out of the session other than staring at the carpet..

You have to decide what benefits there are to being diagnosed and if that’s really what you want because once you have been officially diagnosed there’s no going back.

Since being diagnosed I feel as if a weight has been lifted off me. All those years of trying to find an explanation for my issues is at an end. For however long I have left I can be me knowing that I’m not as alone as I thought I was..

I am relieved to understand why I’m the way I am. I struggle and always will do but there are positive aspects to my autism, like how I experience the arts. I don’t just hear music, I feel it. I don’t just read a book, I become the character and those feelings stay with me long after the music has ended or I’ve turned/swiped the last page. There are two extremes to me with no in-between but then if there was an in-between, I probably wouldn’t be autistic.

I’m not fussed about terminology. I refer to myself as ‘autistic’ rather than having autism but it doesn’t really matter as either is a massive improvement on ‘weird fucker’ or other such things I’ve been called in my time. The important thing for me is that people understand autism itself.

It’s a human thing to want to belong and be accepted. In a perfect world all differences would not only be accepted but embraced. We’re a long way from that but with awareness things are getting better. Diagnosis isn’t right for everyone and it’s something that requires a LOT of thought so don’t rush into it.

Take as much time as you need.

I took four years.

Finally..

Don’t let age stop you from going for a diagnosis. If a codger like me can get diagnosed at 46, anyone can. In fact, people in their 60s and 70s are being diagnosed.

It’s NEVER too late.

Thank you for reading.

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