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.

Anxiety: All Aboard The Crazy Train

 

It’s normal to have aches and pains in middle-age. The problem with minor aches and pains when you have a fearful and sleep deprived mind is that you start to overthink them until they turn into something terminal, like cancer.

This is health anxiety.

Since my late 30s there has always been a part of my body playing me up. This week it’s neck pain and I’m having another IBS flare up. I’m constipated and there is a niggling pain in my lower bowel region. A few months back I would have Googled my symptoms, come up with bowel cancer and scared the metaphorical crap out of myself.

This is what I now call ‘climbing aboard the crazy train’.

The crazy train is the runaway thoughts train. It’s a scary ride. Scarier than ANYTHING you have ever ridden on in any theme park.

Or ever will.

It’s fulled by your catastrophic thoughts. There is no driver. There are no passengers. There is only YOU.

These are just some of my anxiety symptoms over the past six years.

  • Allergies
  • Back pain, stiffness
  • Breathing problems
  • Blanching (pale face)
  • Body Aches
  • Body Jolts
  • Body Zaps
  • Body shakes
  • Body Tremors
  • Blurred vision/sensitivity to light
  • Body Temperature (going from very hot to very cold)
  • Bloating
  • Brain zaps
  • Brain fog
  • Burning sensation on skin
  • Buzzing in hands, arms and feet.
  • Chest pain
  • Chest tightness
  • Chills
  • Constipation
  • Craving sugar
  • Crazy thoughts
  • Difficulty speaking (slow speech)
  • Diarrhoea
  • Depersonalisation
  • Difficulty thinking/concentrating
  • Dizziness
  • Difficulty swallowing
  • Dry mouth
  • Flu-like symptoms
  • Fear of dying, of losing control and going crazy
  • Feelings of unreality
  • Feeling that the tongue is swollen
  • Frequent urination
  • Hair loss
  • Headaches/migraine
  • Heart palpitations
  • Hot flashes
  • Hyperactivity
  • Insomnia
  • Loss of appetite
  • Mouth (burning tongue and clicking jaw)
  • Memory loss
  • Muscles (vibrating, tremors, weakness and wastage)
  • Nausea (retching and vomiting)
  • Neck (shoulder and neck tension and stiffness)
  • Nervous stomach
  • Night sweats
  • Numbness in fingers, feet and arms
  • Rapid/irregular heartbeat
  • Pulsing sensation
  • Sensitivity to foods and medication
  • Shortness of breath
  • Sexual Dysfunction
  • Shooting and stabbing pains
  • Skipped heart beats
  • Soreness on scalp (like bruising)
  • Twitching
  • Tinny taste in mouth
  • Tinnitus
  • Lightheaded
  • Weak limbs
  • Weight loss

To list ALL my symptoms would obliterate my word count but you will see that my anxiety symptoms have affected me literally from my head to my feet and I have multiple symptoms at any one time. In my case, being menopausal and autistic means that there are overlaps but the anxiety makes things profoundly worse. For instance, my Tinnitus isn’t an anxiety symptom per se but it is worsened by the anxiety.

The most comprehensive list of anxiety symptoms I know of is here.

The next time you say, ‘THERE’S ABSOLUTELY NO WAY THIS SYMPTOM CAN BE DUE TO ANXIETY!’

Have another read through the list!

All these symptoms and the ones listed in the above link are symptoms of stress.

Heart symptoms are classic anxiety symptoms but you should ALWAYS get them checked out if they are new for you. I underwent tests on my heart and the doctors concluded that my ticker was doing everything that it should, it was just beating faster than it should because my body constantly thinks it’s in danger.

I have generalized anxiety with health anxiety that is now in ‘remission’ cos I got myself some therapy, innit? I’m also autistic which is where the roots of my life-long anxiety problems lie. A lot of autistic people have mental health issues. Most, I’d say. This is because it’s stressful living in a world that you don’t understand and which doesn’t understand you. I also have OCD with sporadic bouts of depression. Not forgetting the good old menopause which means I am lacking in the hormones which kept me sane (ish) for 30 years – discounting one week out of every month where I went psycho and would have willingly stabbed somebody for their Mars Bar..

Over these past six years, I have been UTTERLY convinced that I have having a heart attack or that one is imminent. Or that I am riddled with cancer or some other insidious disease. Yet, ALL the tests keep coming back clear. The horrors that I have tortured myself exist only in my imagination. Whoever said that autistic people don’t have imagination? I have a fabulous imagination. Ask my GP!

Everybody is different when it comes to anxiety. My symptoms may not be your symptoms but the one thing I have learned about anxiety is that it affects your WHOLE body. Symptoms are transient. They stick around for a few days or a few months but then they go to be replaced by something else. To the exhausted mind – new symptoms equals fear.

‘THIS time, I’m really ill.’

Yes you are, but the illness is mental not physical. Dear.

A few months ago I would have been hyperventilating in my GP’s surgery at the onset of a new symptom but I have been there, done that and the t shirt is a mangled mess. Now, I calmly remind myself to acknowledge the symptom but not to Google it. If it lasts longer than two weeks, I see my GP.

It is important that I don’t CATASTROPHISE.

Yesterday it was neck-pain to the point where I needed painkillers but instead of allowing my mind to start shitting me. CANCER? OMG AM GONNA DIE kind of thing, I thought it through logically..

Last week, I’d been decorating, as in, climbing up ladders and looking up. I was working muscles that I hadn’t used in a while. Plus, I have arthritis. When you look at it rationally it’s easy to see why my neck would be giving me gyp. Simple isn’t it? IBS symptoms? I’ve been back on the beans and onions. To the exhausted mind – ANY pain – fires up the stress response. It has to be an illness, right?

Nope.

Don’t believe everything you think.

I didn’t allow my thoughts to run away with me. I took painkillers and each time the ‘what if?’ Gremlin wandered into my mind, I acknowledged it for what it was – A THOUGHT – and carried on binge watching Benidorm. Today, there is no pain and I had a decent night’s sleep because I didn’t climb aboard the crazy train.

Way to go, me.

The point of this post is to help you to understand that anxiety affects the entire body. Often there will be no explanation other than stress hormones affecting your body. I wouldn’t have thought that my scalp feeling bruised was an anxiety symptom but it is. Or a clicking jaw. The good news is that your symptoms will start to fade away as your stress levels recede. If you need the reassurance of your GP, by all means go and get your ten minutes worth.

Then ACCEPT it when they tell you it’s anxiety, especially when tests come back clear.

The crazy train will come for you.

YOU DON’T HAVE TO CLIMB ABOARD.

 

Autism: Confessions of a Skin-Picker

 

What’s Stimming?

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

It’s done for relief and pleasure.

Simplified: Stimming calms or stimulates.

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

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

We stim to release tension or to stimulate ourselves.

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

*eyes are watering*

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

It started with spinning where, as a small child, I would spin myself around until the butterflies danced in my stomach.  Then came infants school where there were boxes upon boxes of colourful (and tactile) objects that I liked to stroke or manipulate in my hand. Doing this soothed my anxious mind – albeit temporarily. I wasn’t interested in constructing things like the other children. Sod THAT for a game of conkers! I just wanted to sit in a corner and stroke stuff!

Speaking of conkers…

I like to touch them. (NOT a euphemism)

Then came the glue..

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

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

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

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

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

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

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

Whoever invented ‘Jus Rol’ has my unwavering adulation.

So, glue..

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

The glue dried and I discovered that peeling it off my fingers was quite possibly the best thing to happen to me since Enid Blyton!

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

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

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

Yeah, a lot of my stims are gross.

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

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

OF COURSE I PICKED THEM!!

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

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

Downside is: I have scars.

LOTS of scars.

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

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

My bad, motherfunglers.

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

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

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

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

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

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

Next, is my thumb ring.

Yep, I just lurve touching my ring.

Leaaaaaaave it.

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

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

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

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

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

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

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

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

 

 

 

 

 

 

 

 

 

 

 

Autism and Socialising

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

This was one such occasion..

Sometime in the 1990s

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

Needless to say, NIGHTMARE!

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

The danger of having to walk into an unfamiliar building.

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

The danger of having to act ‘normal’.

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

Flight was no longer an option.

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

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

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

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

I’d have said: ‘No thanks’.

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

Not that I overthink things at all..

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

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

All I could manage was a vacant stare.

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

Or maybe he was pissed?

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

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

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

My body went into panic mode.

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

My heart was thumping out of my chest.

My mouth was dryer than a camels hoof.

I wanted to vomit.

I needed a really BIG wee.

My eye tic kicked in.

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

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

*confused face*

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

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

I froze.

I’m a freezer.

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

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

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

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

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

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

I was the joke.

Am I missing something here?

Were those girls being funny?

Or were they being mean?

To this day, I don’t know.

I never went out with them again.

Why would I want to?

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

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

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

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

Now I know it’s because I’m autistic.

I’m the misfit.

The odd one out.

Or I was..

Then I found my ‘tribe’.

People who get me.

People who understand everything I say and do.

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

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

People like me.

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

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

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

I Am What I Am ~ Gloria Gaynor

 

 

 

 

 

 

 

Autism and Burnout

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

The Signs Of Physical and Emotional Exhaustion

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

Alongside the physical signs, there are emotional signs.

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

When you reach this stage it is illness.

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

Burnout.

Nervous Breakdown.

Shutdown.

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

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

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

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

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

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

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

At 46 years of age I had a nervous breakdown.

Finally, my body said ‘ENOUGH’.

Physically and mentally, I burned out.

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

Why do autistic people burn out?

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

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

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

We fear.

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

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

You learn to say no.

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

You accept your limitations.

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

What the fark is a skin suit?

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

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

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

I feel lighter.

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

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

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

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

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

This is no longer about them.

It’s about you.

It’s about self-care.

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

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

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

To fit in?

So I don’t offend people by saying no?

I’m done with all that.

We should all be done with that, right?

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

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

It’s time to be you.

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

 

 

 

 

 

 

 

The Teenager That Santa Forgot..

One year, Santa forgot me.

It’s true.

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

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

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

I was:

Fifteen. Teenager. Vegetarian. Knew Everything. Annoying.

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

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

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

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

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

Christmas Eve

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

I felt very grown up.

I was even allowed wine. SHHHHHHHH!

Dad was on the Jack Daniels.

Brother was semi-pissed on Southern Comfort.

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

Everyone was happy.

Until it went tits up..

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

In my confused mind, ONE thing registered.

SHIT!

Dad was rolling his eyeballs.

Brother was smirking at me.

Elvis was crooning Blue Christmas in the background.

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

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

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

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

I still don’t know.

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

Showing off?

Er, I’M AN INTROVERT?!

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

But it wasn’t them.

It was me.

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

Nobody knew I was autistic.

Not even me.

Christmas Day

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

I slunk into the living room..

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

One for my brother.

One for my dad.

The third pile was my mother’s.

FUCK!

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

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

I’D MADE THE NAUGHTY LIST.

THE SHAME!

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

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

Tears slid down my face.

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

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

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

A few minutes later she appeared with my presents.

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

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

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

Maybe that was the lesson?

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

My first gift?

It was Love.

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

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

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

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

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

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Spontaneity Hurts.

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

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

It certainly doesn’t work that way for me.

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

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

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

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

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

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

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

Take Christmas, for example..

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

child-1867394_1280

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?

damage-42658_640

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