I’m human, just not like you.
I hear what you don’t hear.
Do you hear me?
I’m human, just not like you.
I see what you don’t see.
Do you see me?
I’m human, just not like you.
I know who you are.
Do you know me?
I’m human, just not like you.
I hear what you don’t hear.
Do you hear me?
I’m human, just not like you.
I see what you don’t see.
Do you see me?
I’m human, just not like you.
I know who you are.
Do you know me?
The Boy granted me an interview in return for some Jaffa cakes. What can I say? He’s cheap. So without further a do.. here it is. Enjoy! 🙂
Question: What do you like to do the most?
Answer: You know! Playing Pokemon Moon! Duh!
Question: What is your favourite food?
Answer:. Chocolate digestives. You know that! *tuts*
Question: Who is your favourite person in ALL the world?
Answer: Mum, you know that too. It’s you. *theatrically rolls eyeballs*
Answer: Still you.
Question: What is your favourite TV show?
Answer: Pokemon Sun & Moon series.
Question: What’s your favourite book?
Answer: Diary of a Wimpy Kid Double Down cos at the first page Greg says “Hope you creeps are enjoying yourselves”. It’s really funny. *laughs hysterically*
Question:. What do you want to be when you’re older?
Answer: *throws his hands up in the air* Pokemon Master, of course!
Question: What things don’t you like?
*deep intake of breath* Vegetables cus they make my mind go pop, spotty bread, brown chips, black sausages, nuts, lime, black lollipops and Pokemon killing me.
Question: What do you like to wear?
Answer: Pokemon trainer clothes.
Mummy: Which are?
The Boy: Er, shorts and a top with no sleeves, backpack, cap and LOTS of Pokeballs.
Question: Mummy or Pokemon?
*looks shifty* Pokemon. Sorry Mum.
Question: What’s your favourite colour?
Answer: Yellow. YOU KNOW THAT!!
Question: Favourite animal?
Answer: Chicken? Don’t really have one so I’ll say chicken.
Mummy: What about owls?
The Boy: OOH YESSSS, OWLS! *starts hooting*
Question: What’s your favourite place?
Answer: Home. Ya gotta love home. *American accent*
Question: What is your greatest talent?
Answer: Singing and making Mummy laugh.
Question: What do you wish for?
Answer: To be a professional Pokemon trainer.
Question: What makes you nervous?
The Boy: “Shall I tell you what makes me nervous?”
Me: “Please do”
The Boy: “People cutting my hair”.
Question: What makes you smile?
Answer: When Mummy smiles (and my Pokemon)
Question: What age do you want to be?
Answer: Seven. Because I am seven. Actually, I want to be twelve so I can look cool because most people start their Pokemon journey at 11 years old?
*Mummy’s face goes screen-saver*
So there you have it, folks. As you can see, there is a Pokemon obsession going on and I intend to repeat the
interrogation interview every year to see how his likes and dislikes change. Crafty, huh?
Many thanks to The Boy for being a TOTALLY AWESOME Pokemon Master and most magnificent interviewee.
Creative Commons Image Via Pixabay
I’ve never been one for playgrounds..
Too crowded. Too noisy. A sensory nightmare.
The squeak of bare legs being forced down a hot metal slide on a summer’s day still makes me shudder as if there’s a hairy-arsed tarantula about to pounce on my face..
When The Boy was younger he hated playgrounds with passion. The first time we put him on a swing he like TOTALLY screamed the place down. Sure, children having tantrums are common place in parks but I’m talking TOTALLY LOSING HIS SHIT meltdowns where people stare at you because it MUST be down to bad parenting, no?
Playgrounds are a danger area for us because of the stimulus. Even now (aged seven) ten minutes is all he can handle before he starts to go into meltdown. Although the stimulus affects him, he likes the playground now. He is a sociable child but the problem is that he is too sociable and doesn’t understand the rules as is the case with autism. It doesn’t matter how young or old the other children are because they are all equal in his eyes and this causes problems..
For instance, on one occasion The Boy ran up to five teenage boys who were hogging the roundabout. He jumped on there with them as if he’d known them all his life. I hesitated to see how they would react to this little interloper but The Boy’s idea of play involves lots of incoherent shouting so it wasn’t long before the teens started nudging each other and laughing, the twats, though to be fair, they were just acting the way that most teenage boys act, it’s just that I’d have given anything for just one of them to show my son some compassion..
The Boy laughed back but had no idea that they were laughing at him. This took place in a matter of seconds but I’d seen enough but as I made my way to him the teens got up and just left him spinning on his own, not that it bothered him. As usual, he was oblivious as to what had taken place..
The thing is that he stands out.
His autism is IN YOUR FACE, autism.
We let him go into playgrounds whenever possible as long as he’s not showing signs of overwhelm before he goes in. We know that he’ll get over-excited pretty quickly so he’s given a ten minute countdown and those minutes seem like hours, believe me. All this on top of my own sensory issues makes it a stressful experience..
The last time he went into a playground was a few months ago. It was the adventure type playground and he homed in on a big rope type roundabout that could take about ten children at a time. My heart sank because I knew what was coming. I have a fluffy sensory toy which I keep in my pocket to calm myself and I stroked it so fast, I practically rendered it bald!
The Boy scrambled on with no qualms whatsoever. Aside my anxiety, I had to marvel at his inability to be apprehensive in certain situations. So, there was a little girl stood next to him and he shouted away to her. He was totally animated but she just stared at him open-mouthed and then asked to be let off. Once again, my son had been rejected only it was me who felt the pain, not him.
OH and I exchanged ‘the look’.
When we’d entered the playground, it was noisy with children screaming and parents chatting. It literally took five minutes for the atmosphere to change. One by one the kids on the roundabout fell silent as they stared at the little boy who excitedly screamed out incoherent babble to nobody in particular..
Then the parents stared at him and started looking around to see who he belonged to.
Er, that’ll be us, folks.
We knew he wasn’t going to make ten minutes as he was seconds away from meltdown and I wasn’t far behind having one of my own, so we grabbed him and left.
I didn’t look behind me because I didn’t want to see the judgmental looks on the faces of people who haven’t got a clue about our lives or his. I’ve seen those looks too many times and each time it hurts. I physically and emotionally hurt for my son..
So, I slammed the gate shut and pulled him close, mentally effing at the lot of them for not seeing my beautiful boy as I see him.
The blessing is that he is unaware of the way people stare. I was aware from the age of five so I’m glad he’s been spared for as long as he has but the day will come when he does notice and being different and knowing you’re different is hard. You’re forever having to work at appearing ‘normal’ and I pray that my son remains oblivious of people’s intolerance and ignorance for as long as is possible.
Those five minutes in the playground are still bothering me, obviously because I’m writing about it months later. It’s in my head now, logged with all the other ‘incidents’ and it makes me sad that some people show more compassion for their cars than they do human beings, especially vulnerable ones who could really do with their support..
Here’s a thought..
How about people stop staring and start supporting these kids?
Why shouldn’t my son express himself in the way that is natural to him? He’s not hurting anybody. It’s not an aggressive reaction. What people see is happiness minus the filters. To me, it’s beautiful. He is beautiful. It isn’t him that needs to change, it’s society.
“How would your life be different if…You stopped making negative judgmental assumptions about people you encounter? Let today be the day…You look for the good in everyone you meet and respect their journey.”~ Steve Maraboli ~ Life, the Truth and Being Free
I wake up with a racing heart..
‘Fer f**ks saaaaake!’, I whine, a bit pathetically.
This time it’s different though because I don’t fear the sensation. It’s unpleasant but it will pass. I’ve been here a hundred times before.
‘Don’t you DARE look at the clock!’, I warn myself, though I imagine it’s around four. I elbow OH in the ribs because he’s snoring like a bastard, then I make myself comfortable.
I close my eyes..
I breathe in for four seconds.
I hold my breath for four seconds.
I breathe out for four seconds.
I reach into the certifiable mess that is my mind and retrieve a happy memory of a sunny day on a beach in Wales. I remove the people from the memory so there is just me. No stressed-out parents, no screaming kids and no Mr Whippy van with his highly irritating mechanical chimes..
I change the weather from hot to warm, because I can.
Editing done, I start to walk along the beach, seeing myself in first person perspective, just as in life. Though it has to be said that my feet are hideous..
There are sand dunes to the left of me, cliffs behind me and the golden Welsh sands stretch out before me. I walk for a while then turn to face the ocean..
I love the sea. It has the ability to take my life within minutes, yet can soothe my frazzled mind. The only snag is I can’t swim.
I watch as the waves roll in and out, synchronizing them to my breathing. Then I become aware of my bare feet sinking into the cool sand and a catastrophic thought creeps into my mind. I see myself being dragged under by deadly quicksand. This is because Mum, bless her, nearly ended herself on a beach in Bournemouth. Thankfully, all she lost was a flip-flop and her dignity.
The seagulls fly above me but there’s no danger of them crapping on my head. Nor are there any Carling cans and fag-ends jammed into the sand ruining my view because this is my special, no shit allowed, place.
Suddenly I feel something cold on my leg and look down to see a beautiful Lurcher with his nose pressed against my leg. He has golden fur, the kind that’s comfortingly rough. His eyes are caramel brown with more love inside them than you could ever imagine..
He starts to dance around me, nudging my leg and woofing like a mad thing.
He wants to play..
A piece of driftwood appears, as if by magic, and I hurl it into the sea with all the finesse of a shot-putter, not that he cares. Off he bounds into the waves, barking excitedly. He finds the driftwood and brings it back to me. ‘Again?’ his eyes implore me..
So I indulge him, again and again until I have to tell him to sod off because my arthritis is giving me gyp.
He hurdles the waves, like Usain Bolt, only with fur. He is uninhibited and for a moment I envy him because he isn’t scared of anything..
After a while he tires himself out and makes his way towards me. I crouch down to his level and stroke his face. He makes this noise, like he’s singing, only it’s more of a howl. It’s dog-speak for ‘I’m happy’.
Miraculously, his fur has dried out. How did that happen? Because it can, that’s why.
I put my face to his and breathe him in. He smells like sunshine. His aroma comforts me and I can feel my heart rate slowing right down. This moment lasts as long as I need it to, then he gives me one last look with those beautiful eyes before he ambles off towards the dunes..
I gaze down to see two sets of prints in the sand, one of hideous size 4 feet, the other of paws.
My four-legged friend is nowhere to be seen. No doubt he is lying in the shade somewhere chasing rabbits in his dreams..
A gentle breeze stirs up so I walk some more, watching as the clouds pass along the blue sky like big balls of cotton wool. If heaven exists, I want this to be mine.
My heart rate has returned to a steady beat and my breathing to normal. I am calm.
I stare at the ocean one last time then make my way towards the dunes where there are a set of steps. In reality, those steps lead to some public bogs that reek of piss but I edit that bit out because, well, it’s a bit shit.
As I climb the steps, I congratulate myself because Fear didn’t win this time. I showed that little shit who’s boss, i.e. me.
By the time I reach the last step, I am opening my eyes and blinking in the sunlight, or dinge, whichever is applicable. Back to life, back to reality..
The brain is a powerful thing. Thoughts can destroy and heal you in equal measure. My brain frustrates me on a daily basis with it’s catastrophic thoughts yet the memory of a much loved friend, who died over ten years ago, has the power to heal me.
The memory is real and it’s a privilege to have, just as it was a privilege to share part of my life with such a loving creature.
The first time I saw him in my guided relaxation, he simply appeared without me having thought of him. Did my subconscious bring him to me? Or did he find me?
Either way, I am grateful because each time I wake up panicking, I go to my special place and there he is, waiting for me.
Sometimes I need to shutdown.
I just stop functioning.
Even if I want to speak, the words won’t come.
Not even yes or no.
I am aware of you talking but I can’t answer.
Like a form of paralysis
I have no words to reassure you.
A storm is raging within me
My inner fight.
I’ll get through it.
As all storms pass
There may have been a trigger
A memory, thought or word.
Stuff builds up.
Things you’d never imagine would matter.
Trivial to you.
Astronomic to me.
Leave me to unravel my thoughts and I’ll come back
But for now I have to withdraw.
Like a computer that’s frozen
I need to shut down and restart.
I can’t process these thoughts..
They whirl inside my head.
Big fuck off mountains out of molehills.
Thoughts you wouldn’t want..
So when I leave without explanation, let me go.
In order for my mind to unravel itself.
I’m not doing it to hurt you.
Nor am I being intentionally rude.
It’s just that it’s necessary.
My brain is wired differently..
Incompatible with this world.
Too much information
So I’m asking you to understand as best you can..
The reason why this happens
That it’s not you.
Did you know that over 700,000 people in the UK are autistic and most of them are adults? Much has been written about children and autism but there is very little information about ageing..
Most autistic people have additional problems such as depression, anxiety, sleep issues or learning difficulties and on top of all this comes the ageing process – which can be shit at the best of times.
Being diagnosed at 46, I understand myself as the child that I was and the adult that I am now but what next?
What will happen to me when I’m old?
A positive thing about diagnosis is that it’s given me permission to be myself. Pretending to fit in is exhausting but I have confidence to be me so I no longer have to work quite so hard at existing.
However, the way my mind works is that I dwell on the past and overthink the future. The future causes me concern because I fear being put in an old peoples home where I would be forced to be social. I’m not saying that every autistic person will feel like I do as we’re all different but as far as I’m concerned, it would be hell.
I’m not completely averse to being social but it has to be on my terms and I reckon I’d die pretty flipping quickly if my need for solitude was not respected or understood.
I don’t want to sit on a plastic chair and watch shit TV programmes.
I don’t want to play bingo.
I don’t want to eat my food with everybody else.
I don’t want to go on day trips to the fucking seaside where I’ll be asked if I need a piss every five minutes.
I’m sort of hoping I’ll vacate this planet via my own home but you don’t always get what you want do you?
I get that oldie homes work for many people. The social thing probably keeps them alive longer but not me. I’d be bagged, tagged and laid out on the mortuary slab within a week!
As I age, I will most likely need more medical intervention. I mean, I’m creaking like an old barn door now so it’s a given. One problem with this is I struggle with verbal instruction, not because I’m slow, but because my brain can’t process more than one verbal instruction at a time so when medical professionals start reeling off instructions at one million miles an hour because they are SUPER busy, my brain goes screen saver and I just remember the first part or nothing at all. I need them to understand this about me and either slow up or write it down and when I request this of them I don’t want to be considered an awkward git.
One example of this is when I recently went for a Dexa scan. The radiographer fired out about four verbal instructions in one go. My brain went blank and I froze so he got up from his chair and physically moved my legs into position. He didn’t ask if he could move my legs for me and I resent that. I felt stupid. In the past I have been called stupid when I haven’t responded to verbal instruction. Now I understand why I struggle. I’m NOT stupid but people ARE ignorant.
I want healthcare professionals to understand that unfamiliarity makes me incredibly anxious which exacerbates my sensory issues, like pain threshold. I’m not being pathetic or difficult. I’d like them to treat me as they would a member of their family. That applies to everybody, regardless of autism, because we ALL matter. Would that radiographer have been as abrupt with his own mother? I don’t think so!
Although I’ve known I’m autistic for the past four years, I wasn’t able to say it. Had I have had the diagnosis it when I had that scan, I would have been able to explain about the verbal instruction (or OH would) and I wouldn’t have been made to feel like a tit.
The first children diagnosed as autistic are now middle-aged and I think it’s very important that we research how the autistic person changes physically, emotionally, cognitively and socially as they age. Most people need help in old age so it stands to reason that autistic people will require more support and understanding of their individual needs. I still fear old age but not quite as badly as before I was diagnosed..
The fear I have about not being here for The Boy is one I have the most trouble with. How will he cope without me? That thought physically hurts me but my job is to make sure that he can survive on his own. We’re on a path, him and I. He’s growing up and I’m growing old. I may still be 16 in my head but my body is convinced it’s 109. However, while I still have breath in my rapidly ageing body, I will do ALL I can to support my son. The day he no longer needs me will be a heart stopper but that’s what I’m aiming for. Not for my heart to actually stop cus I’d be dead like, but for him to be independent.
That’s what any parent aims for.
Some autistic people never achieve independence and that must be so hard for parents to deal with but I can only tell our story and independence is a possibility given the right support.
I’ve managed to survive for almost 47 years without support. However, it’s been hard and I don’t want him to struggle as I have. Once he’s living his life independently, I’ll embrace codgerdom in all it’s glory until Death points his bony finger my way and says in his best Sean Bean accent “Come on lass, let’s go ‘ome”.
And off I’ll go.
Thanks for reading.
It’s a myth that autistic people don’t feel empathy.
Some autistic people may appear to lack empathy but it’s generally the case that they feel it but don’t know how to respond appropriately.
Some autistic people, like myself, have too much empathy..
I am hypersensitive to everything in life. Just as my senses work overtime so does my empathy.
My first recollection of being this way starts at school where children (including me) were singled out because they were different..
In primary school there was this boy..
I vividly remember the smell of him and the threadbare clothes he wore for days at a time. Having sensory issues I was acutely aware of the unwashed odour but never moved myself away from as other children did. They made a game of pushing each other into him and running off shouting that they’d got some disease because they’d touched his clothes.
Gets you right here doesn’t it? *taps heart*
I hated the other kids for that.
I hated myself for not making them stop.
More than anything I felt compassion and that overrode the sensory stuff.
It’s a different kind of sadness now. Back then I was a child who didn’t understand poverty. We were by no means well off but we had everything we needed and our basic needs were met. I’m a mother now who understands that, for whatever reason, his needs weren’t met. I never knew his story or how he came to be neglected like that. Maybe his mother was struggling to cope? Or ill? Maybe he didn’t have a mum? Whatever the reason it wasn’t his fault because he was just a boy.
I still think of him and always will and even though he’s grown up like me, he will always be that little boy.
A couple of years later we moved and I started my new school in the last year of juniors. The bullying, which had been sporadic until then, stepped up a few gears and would remain the case until I left school five years later.
So there was this girl..
The first day I saw her she was sitting alone in the hall eating her dinner. I didn’t give any thought as to why she was sitting on her own while everybody else was in groups. I just remember the stomach churning stench of cabbage and the sight of her with her bright red hair sat alone on a big table..
She saw me standing there, tray in hand, not knowing where to put myself and motioned for me to sit beside her. So I did and was grateful to her for being the ONE person in the room to welcome me.
The other kids made fun of her hair, among other things. I’ve never understood this about red hair because I think it’s beautiful. Jane Asher? Gorgeous!
This girl came from a big family and her clothes were nearly always too large for her. They were obviously hand-me-downs. She got picked on for that too. Where I’d come from it was the norm to wear your siblings cast-offs. I’d certainly never witnessed such snobbery before but it was clear that what was written on a pair of trainers mattered a great deal to some of my class ‘mates’.
The children dehumanised her. The abuse was constant and her defence was to cry or laugh back as if it was all some big joke. Some joke! They were arseholes to her and I wanted to make them to stop but didn’t know how. On the outside I was expressionless and motionless but inside I was imploding. This would stay with me all day affecting my mood. At home I would be difficult without understanding why. I know now that things stay with me long after the event.
There was almost a sense of relief when they turned their attention from her to me because it was easier to bear my own pain than hers. I can’t tell you how many times in my life I have rearranged it all in my head and stood up for her.
In my head, I stood up for myself EVERY time.
So when I hear about teenage kids ‘snapping’ and going a bit psychobilly at school, I have sympathy for them because they have nearly always had to endure years of bullying which is abuse. It doesn’t excuse it but explains it. I snapped and punched a girl who’d been bullying me but that was after enduring four years of daily abuse. I’m not a violent person but we’re ALL capable of violence when the right buttons have been pushed and that applies to EVERY human being on this planet. Piss the Dalai Lama off enough and he’d probably right hook you too!
The problem with my autism is that I feel too much and that’s both good and bad. Good because I can experience things and feel euphorically happy. Bad because I soak up negative energies and pain. I have so many memories and thoughts that I wish I didn’t have..
I am still haunted by the Jamie Bulger story and often lie awake thinking of the 15 year old boy who went to the 1989 semi cup final football match in Hillsborough and died in the arms of a policewoman, his last word being “Mum”.
I can’t watch horror films and struggle to watch scenes of violence. When my anxiety is at its worst such scenes will trigger panic attacks. I can cope with scenes of bullying if there is an element of humour to them, as in, the bullies are made to look foolish. However, bullies are made, not born. To understand a bully you have to know their life and more often than not there will be something (or someone) that changed them. Painful memories may cloud my empathy towards certain people but it’s still there at default level. Yeah, they were bastards who hit me but who hit them?
The Boy is also highly empathetic. He couldn’t watch the BBC 2 Venus flytrap indent that was running last year. He covered his ears and looked away EVERY time.
The Boy has empathy by the bucket load and is autistic. Like everything else in his world, it’s amplified. Colours are BRIGHTER. Sounds are LOUDER and he feels emotions with such INTENSITY that it physically HURTS him. However, he struggles to react appropriately and so people misjudge him..
So many things about autism are misunderstood and empathy is one of the big ones.
I’m here to help my sensitive child understand the world which is a hard task seeing as I struggle myself but I can teach him what he needs to survive and hopefully thrive. Maternal instinct makes you do things you wouldn’t normally dream of. I just wish I could have done something to lessen the pain of those two children at school. Their pain, hopefully long gone, will always be mine.
The problem with empathy is not being able to let go of something, even when it’s a memory.
“for there is nothing heavier than compassion. Not even one’s own pain weighs so heavy as the pain one feels with someone, for someone, a pain intensified by the imagination and prolonged by a hundred echoes.”
Milan Kundera ~ The Unbearable Lightness of Being
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
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.
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.
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.
“Follow your inner moonlight; don’t hide the madness.” Allen Ginsberg
Throughout my years of blogging I have always made it clear that I have life-long issues relating to social communication and sensory issues.
I was a misfit from the moment I started school at five years old. Why five? Well because it was just me until then – me, the Golden Labrador next door and my rather fabulous inner world. I had no reason to know I was different.
Since then life has been difficult at best. At worst, it’s made me ill.
I’m ill now having hit a crisis point with the general anxiety disorder I’ve had for the last three years.
I have always had anxiety right from as far back as I can remember. As a child I was generally THAT pale I looked as if I’d been exhumed and I had one ailment after another. I didn’t understand it was anxiety at the time and I feel sorry for that little girl because as bad as I feel now at least I know why I feel like I do. Little girl me didn’t have a clue and was very scared. I couldn’t tell anybody. How could I when I didn’t know how to?
I don’t know what it’s like NOT to have anxiety in some degree or other.
The things that most people do effortlessly are challenges for me. As soon as I go through the front door I have to pretend to be normal, whatever normal is. All I know that after 40 odd years of observation, on a good day I can pass for ‘normal’. On a bad day you’d be sending round the nutter van. This is because pretending to be normal takes effort and it’s exhausting. It exhausts body and mind and after all this time, well, I’m knackered.
Online I get to communicate without the problems I get when faced with actual human beings. The barrier between me and the outside world allows me to interact in a way that I’m unable to in life without making myself stand out. So what I am going to say may come as a surprise to people who interact with me online..
You see, for most of my life I have been aware that I am different but I’ve never known why. I must have spent hundreds of pounds trying to find myself within the pages of self-help books. Bouts of anxiety and depression over the years have led to therapy but therapy for what?
I never knew what was wrong with me and it REALLY bothered me.
My list of problems is ENORMOUSLY LONG but here are a few things.
Avoiding answering the door or the phone.
Being unable to walk into a room full of people.
Certain materials make me feel so irritable and uncomfortable. (Nylon? *boak*)
Struggling with eye contact until I was in my 30s.
Having too much empathy.
Being constantly bullied as a child and teenager.
Not being able relate to most other girls.
People calling me weird including the local pisshead and it must be bad when the local swiller tells you you’re weird.
Shutting down when overwhelmed. (selective mutism)
Escapism being VITAL to my mental well-being.
Soaking up people’s moods up like a sponge. (You’re having a shit day? Then so am I)
My body reacting in the same way no matter how many times I do something.
Why I am obsessive in thoughts and interests.
Why my ‘imaginative’ play only ever involved imitating what I’d seen on TV programmes or films.
My mood going from euphoria to despair and everything in-between in any 24 period.
Having to observe and copy in order to fit in.
Why I have picked at my skin so much that I have scars.
Always feeling a sense of unease. (WE’RE DOOMED!)
Always feeling the odd one out.
Catastrophic thoughts about everything.
Questioning why I am here.
ALWAYS feeling that I was not meant for this world..
You get the picture?
So I had resigned myself to being a weird sod. One of life’s oddities. A misfit.
Then we took The Boy to be assessed for autism and from the questions they were asking I knew then that I was autistic.
LIGHT BULB MOMENT!
For almost four years I debated whether I needed a formal diagnosis. Many people are content to just know that they are autistic and trust me, most people know. For me, it wasn’t that simple because some of my issues have become worse as I’ve got older and one of my fears is being thrown into an old persons home where I would die within a day because of the social aspect.
Also, I needed validation.
So last year I was assessed and in February this year I was formally diagnosed as autistic and the relief is immeasurable. I’m not weird. It’s just that I perceive the world differently.
Last year I went to the autism show in Manchester and it was while I was there that I came across Peter Street. Peter is a national and international poet and was diagnosed late in life as autistic. Peter was one of the speakers on the day and spoke of his experiences at school and his diagnosis. Hearing his story helped me to make the decision to go for assessment because I could see how much it had helped him and he was older than me when he was diagnosed so I knew it wasn’t to late for me. So, thank you Peter.
Peter also passed round a poem which was written for everybody on the spectrum. I have this on my kitchen wall and read it every day..
Not Being Me by Peter Street
Childhood nights were dreams
of being a sheep
then up and out of a morning,
a quick check to see
if by any chance in the night
there had been a change
of being just like all my friends
and not the odd one out
like afternoon dance lessons
in the toilet
out the way because
I couldn’t dance the sheep steps
that’s why I dreamed
of being a sheep
so I could be like everyone else
I listened to this poem and cried because I understood EVERY word of it. How many times as a child had I prayed that I would wake up and be like everyone else? However, I wasn’t like everybody else and now I know why. All these years I’ve been fighting against my own brain so is it any wonder I feel so tired now?
So, as Mozzer from Manchester once said…what difference does it make?
Well, it just means that I have a formal explanation for why I struggle so much and hopefully I can get some support as I get older because I really am scared of having to live in Shady Pines and having to play bingo and shit. I would rather choke myself to death on my own false teeth!
I’m still me. It’s just that my reality differs from yours. That and I touch plugs waaaaay more than is healthy, y’know?
So there you are..
I’ve outed myself as the autistic human I am and have always been.
Thank you for reading.
Not Being Me poem used with kind permission from Peter Street.
Images via Creative Commons
It’s been a difficult time at school for The Boy but then the first weeks back after the holidays always are aren’t they? At home he’s been a complete git. Much stroppier than any teenager I’ve ever known, myself included and he’s only six and three quarters!
On Saturday he went back to the children’s disability centre after a three week break. He loves going as he is able to interact with other autistic children, one boy in particular who he has taken a shine to. Unfortunately this boy is much older than him and is starting the teenage group in a few weeks. Whether The Boy picked up on this or it was just an extension of his struggles throughout the week, we don’t know but we were told he had a major meltdown in the park and had to be restrained by two of the carers because he was in danger of ‘bolting’.
Getting to the bottom of meltdowns can be difficult and sometimes we never understand what the trigger is. All we know is that he started hitting out and shouting that he ‘hated girls’. Then he tried to ninja kick the female carers who were having to restrain him. Thankfully there was a male carer who was able to calm him down. Apparently he was new so it was in at the deep end for him, poor sod.
The hitting out obviously isn’t new but I have no idea where this ‘hating girls’ has come from. Boys at school? TV? I don’t think this isn’t something that The Boy has come up with himself. It’s most likely something he’s seen or heard. It’s no surprise that boys of his age are starting to see girls as being, er, annoying so maybe he’s heard a boy casually say, ‘I hate girls’ on the yard but The Boy is literal and looking at it this way it’s easy to see how he could have interpreted it differently from his peers.
The thing about The Boy is that he mimics. If he hears words or phrases he likes the sound of he will repeat them whenever possible no matter how inappropriate they are to the situation. We have to be extra careful what we say around him but we’re human and occasionally slip up like when OH forgot himself and said ‘Bloody’ and The Boy repeated this at school. SHAMING!!
When it comes to TV, he’s nuts about Ninjago and anybody who’s ever had the pleasure of watching it will know that it centers around six teenage Ninjas – Kai, Jay, Cole, Lloyd, Zane and Nya. It’s a good versus evil with hormones thrown in. It’s normal for boys his age to be into stuff like this, right? Eldest boy was into The Teenage Mutant Turtles back in the 90’s while I had a secret crush on Shredder.
What? You’ve never had a crush on an animated character?
Er, moving on then…
The problem is when the child struggles to separate fantasy from reality…
My son thinks he is one of these characters. He talks like them. Raises an eyebrow like them. Stands with his arms folded like them, even on school photographs. He chooses the colour of his pants based on which Ninja he wants to be that day!
Worryingly he demonstrates his ‘ninja moves’ at school and recently this ended in him being carried out of the playground for time-out in the library. As a result Ninjago is banned before school. I only allow him to watch CBeebies in the morning. Yes, I’ve gone from one extreme to another but shows like Teletubbies and The Clangers have a relaxing effect on him. More importantly, Clangers and Tubbies aren’t on the receiving end of a ninja kick.. not that I’ve seen anyway.
The Boy was diagnosed with ASD as Aspergers no longer seems to be a stand alone diagnosis but he fits with Aspergers and many ‘Aspies’ are known to mimic, especially girls.
I mimicked as a child and teenager. In fact, a big percentage of my life has been to copy in order to fit in. It was a subconscious thing as a child but once I had an understanding that I was different, it became a coping skill in order to ‘fit in’ not that I ever really managed to. It’s only in recent years that I have allowed myself to be me because trying to fit into a society that you don’t understand is exhausting and thanks to my hormone malfunction (menopause) I no longer have the patience nor the inclination to be someone I’m not.
Me and The Boy differ in that sense that I never physically acted out in school at his age. At school I barely spoke and when I did the words wouldn’t come out right which only served to earn me the wrong kind of attention so I avoided it whenever possible which meant that things stayed in my head until I got home where I would ‘act’ it all out. Mum would testify to this if she was alive today as she was forever telling me off for shouting. This is one of the reasons she couldn’t understand the words ‘quiet’ or ‘shy’ on my school reports. It never occurred to me to tell her about what was happening at school but if she’d have listened at my bedroom door she might have realised that my play wasn’t imaginative but a word perfect reenactment of my day. The Boy is extroverted and acts out publically which creates problems especially as he’s fond of slapstick and all things ninja and so we have a big problem.
The ‘girl’ thing is being addressed at home and school and I’m confident it’s a blip. When it comes to Ninjago, it isn’t only restricted to the TV. He has comics, books, Lego and electronic games. His life is Ninjago and owls and any autism parent will understand about an autistic child’s obsessions.
This will be no easy task.
No matter what we do here at home, his male peers are mostly into the ‘good versus evil’ on the playground and though I have many skills as a mother, omnipresence isn’t one of them so I’ll have to leave that one to the school and concentrate on things at home.
Any ideas would be appreciated.
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