Things You Probably Shouldn’t Say to Autistic People

You don’t look autistic. 

Is autism supposed to have a look?

When somebody says, ‘You don’t look autistic’, it’s fairly obvious they don’t have a buggering clue what autism is!

In all fairness people probably think they are paying me a compliment, sort of, but what they are actually doing is belittling the difficulties that I face on a daily basis and the fact that I have always relied heavily on people, and always will do.

Autism is a neurological difference which affects how I experience the world and how I communicate, and it’s this which makes me stand out, but you cannot tell from looking at someone’s face that they are autistic

You’re obviously high-functioning!

If by high functioning you mean I can speak, get dressed and wipe my own arse, then yes, I can do those things – generally. However, the term ‘highly functioning’ implies that I should be able to ‘do life’ easily, but the reality is that I have mental health issues and a chronic illness which are the result of trying to ‘cope’ with all those aspects of life that most people do with ease. I’ve always found life incredibly hard. I often get overwhelmed, and then I stop functioning aside the very basics needed to keep my family and myself alive. I shut down. I can’t speak. I can’t read beyond a single sentence. I can’t complete simple tasks like washing the dishes or folding laundry. My brain malfunctions, taking days for it to unravel itself and I have to spend hours on my own in order for this to happen.

P.S It’s not uncommon for me to be tucked up in bed before 6pm!

Would you say this is ‘functioning highly’?

This ‘highly functioning’ label is misleading, to say the least, because it over-estimates what autistics like me are capable of. The mental health and chronic illness stats speak for themselves because when the body is continually flooded with stress hormones, it eventually malfunctions, and the result can be catastrophic. Similarly, those autistics who are considered to be ‘low functioning’ are grossly underestimated and their potential is never reached because nothing is ever expected of them.

What’s 97865 multiplied by 98?

Why do some people assume that all autistics are maths geniuses?

I HATE MATHS!!!

(it’s also been suggested to me that I may have Dyscalculia)

My dislike (bordering on the pathological) of mathematics started in 1975 with the words ‘add and take away’, and I’ve been hyperventilating ever since. I can give you the answer to the sum, but I’ll need a calculator. In contrast, my autistic son could recite his entire 12 times table at the age of 4 and he likes maths – the weirdo.

What medication do you take for it?

I don’t take medication for my autism because it’s not an illness. I do, however, take medication for migraines, arthritis and the general aches and pains which comes from being a fibromyalgic old fart!

Autism is an excuse for bad behaviour.

Autistic people don’t choose to have meltdowns. They don’t wake up and think, ‘You know what? I REALLY fancy losing my shit today!’

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

It’s EXTREME ANXIETY, not bad behaviour!

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

Firstly, I don’t have the necessary parts to be like your sister’s friend’s brother, as much as I would have preferred to have had a penis instead of a vagina during several phases of my life..

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

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

With a great deal of effort, cocker.

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

P.S 25 + years of driving. No points. No parking tickets!! Can’t parallel park though, and I’m crap at using a Sat Nav, but throw Dyscalculia into the mix and it might give you an idea of how hard I had to work to be able to drive?

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

I think you’ll find that a lot of autistic people use sarcasm..

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

I’m autistic. I am an autistic person.

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

You can look me in the eye. YOU CAN’T BE AUTISTIC!!

Technically, I’m looking just above your pupil, but it’s a subtle thing, and you’re unlikely to be aware of it.

Or I’m looking at the floor.

Or out the window..

I spent hours standing in the corner at school for being ‘rude’ and not looking at the teacher. I wasn’t EVER being rude. It’s just that it distressed me to look people in the eye, so technically I was abused by every teacher who ever punished me for not doing it, and on that point I once had the misfortune of ‘tweeting’ to a secondary school teacher who punishes the autistic students who don’t look at him when he’s talking because ‘it’s rude’ and ‘they can’t possibly learn if they’re not looking at him’ blah blah blah..

Excuse me?

I considered it my duty to challenge such blatant arseholery, so I enquired as to whether ‘Sir’ stares at his radio in order to take the information in and do you know what his reaction was?

He blocked me.

This is what we’re up against, folks. No doubt this guy’s autistic students will be in therapy in a few years time, if they’re not already.

I know I am autistic, and the NHS thinks I am too. To my knowledge, the psychiatrist who diagnosed me is skilled in the field of multidisciplinary autism assessment and won’t give out a diagnosis unless she is actually convinced that someone is autistic. To add a little more weight (not that I need to) – I was referred for assessment by an A&E psychiatrist!

Do I have to keep my diagnosis papers on me to prove I’m autistic?!

It would be nice for people to ask questions like, ‘How does autism affect you?’ or ‘How can I support you?’ instead of them questioning my diagnosis as if I’m trying to buy beer with a fake ID.

If I don’t ‘look’ autistic it’s because autism doesn’t have ‘a look’.

The only ‘look’ most of us share is when people say we don’t ‘look’ autistic or we can’t possibly be autistic because we’re married or have a job or can find our way out of the front door..

It looks like this..

 

 

 

 

 

 

 

 

Autistic Parent in a Neurotypical World

I wanted nothing more than to be a mother, but I didn’t factor in the social and communication implications of parenting – such as clinics, playgroups and school.

Then there were the sensory issues..

I was highly aware of changes within my body. I didn’t ‘bloom’. If anything I looked tired, only with great hair. My body became even more sensitive than before and I was even more emotional than before. I struggled with how ‘alien’ my body felt. Then again, I’d struggled through puberty so carrying a human being inside me was never going to be a total joyride, eh? It was a VERY sensory experience culminating in a 21 hour labour during an NHS staff shortage with a very unsympathetic midwife!

My son eventually came into the world and when he was placed in my arms I felt a rush of emotion so intense that it almost burst my episiotomy stitches! Until that moment I’d existed without knowing what I was really here for, but for the first time in 17 years it wasn’t about me anymore – it was about the wrinkly human staring into my eyes and for once I felt no discomfort in eye-contact at all. In fact, I loved nothing more than to look into those blue eyes that would slowly turn green, not unlike my own.

I breast fed my son for six months. Text book mothering. Only I struggled because it was incredibly sensory. See, the little dude had a powerful suck and it hurt – not to mention two bouts of mastitis!

Terry-towel nappies?

Nope!

I’ll have it noted that I entered into motherdom with the very best of intentions, but I didn’t figure that my overly-sensory self wouldn’t be able to handle a bucket of slimy shit-filled cloths, so I bunged my son into disposable nappies after a couple of weeks and I believe my exact words to my (then) husband were ‘Go and fetch me some f**king Pampers!’

While I’m in full confession mode, I put my little boy in his bouncer while I cleaned the kitchen one day and he bounced himself to sleep. The dilemma was – did I leave him hanging in the doorway or disturb him by taking him out, knowing that he chances of him getting back to sleep were zero? As it was, our Jack Russell intervened by licking the drool off his chin annnnnnnnnd he was back in the room..

Sensory wise, it wasn’t all bad, because I loved nothing more than to hold my son and smell his hair and feet. When I see his hairy size 10s now I think back to those sweet little feet that I used to rapid-fire kiss, which is odd, given that I hate people touching my feet!

Practically speaking, I didn’t realise that I would have be so socialble as a mother.

What a complete muppet, right?

All I wanted was to be alone at home with my son, but I knew that I had to ‘socialise him’ or he might grow up to be a raging social phobic like me, so I pushed myself to be sociable and for that I needed to mask because that’s what most autistic parents do. I struggled. I floundered. I died inside, over and over again. But the effort paid off because my son grew up to be an actor and I like to think that forcing myself out of my comfort zone helped to give him his social skills, which makes every arse-clenching second worth it!

Some autistic people don’t want children, and they think that autistics shouldn’t be parents, but I strongly disagree. I’d imagine that those are the ones who see autism as a curse, instead of a difference? Yes, some people are so severley affected that parenting is beyond their capability but I’d argue that there are also many NT parents who also don’t have the capacity to be a parent! Making a baby is the easy part and anybody can do that. That’s not parenting, that’s reproducing. Autistic parents put a lot more effort into parenting than most because we have to, but it’s worth it – especially when your child grows up to be independent.

The chances are that an autistic parent (s) will produce at at least one autistic child, but the positive is that autistic parents understand their autistic children in a way that no NT parent ever can and when I asked my autistic son how he feels about having an autistic mother, he said, ” Very happy (cuz) you know my weaknesses and strengths and I’m not the only one autistic in the house”.

I know when my son is struggling with something and I know when to hug him and when to give him space. I understand his obsessiveness. I understand him, and he can bring me out of a shutdown because he instinctively knows what to say and do. He understands me too.

I asked my eldest son if me being autistic held him back and he answered, ” Never – I remember you having problems with groups and things, but you always pushed me not to have that. I thought you were wonderful and one of the funniest people I know. I think I get a lot of my humour from you. Also, I get a huge sensitive side from you – which is obviously key to my job.”

Finally, I asked my middle son how he feels about having an autistic mother and he replied, ” You’re my mum. I love you regardless. I don’t see you any differently.”

My boys are my pride and joy, literally. They are the very best part of me and I will leave this world knowing that I’ve created three very special human beings who are enjoying life in a way that I never could. I’ve taken my worst experiences and used them as the incentive to make damn sure that my children live, rather than exist. It’s been one hell of a journey, and it isn’t over yet, but it’s been worth every ounce of effort I’ve put into being a mother.

As I write this post my eldest son is about to become a father for the first time. I can hear the excitement (and anxiety) in his voice and I remember that this was exactly how I felt before he was born. His journey as a parent is about to begin and when he holds his baby in his arms, he will finally understand what I’ve been on about all these years..

‘You’ll understand when you have children of your own.’

I must have said this a thousand times..

He will understand that nothing is more important than this tiny human being and I know that my son will be as smitten with his child as I was with him – from the moment I breathed him in.

“What it’s like to be a parent: It’s one of the hardest things you’ll ever do but in exchange it teaches you the meaning of unconditional love.”
― Nicholas Sparks, The Wedding

In Pursuit of Happiness

What is happiness?

Is it life satisfaction?

Is the absence of negative emotions?

Is it pleasure?

For almost all my life, happiness has been an emotion which is fleeting in duration and irritatingly it’s often during these moments of euphoria that the storm clouds roll back in with such force that I wonder if I will ever know happiness again..

It wasn’t always this way, though, because I remember being happy almost all of the time until the age of five. Then I started school, and that’s where it all went wrong for me.

Prior to this I was wary of the world outside of our gates because it made me anxious, but most of my time was spent in my fantasy world where I could emulate characters from books, films or tv. We had a large outside space with a separate brick-built garage which looked like a little house from the side, and there was separate door that I could sneak through unseen. It was the best play house ever, even though it wasn’t at all child friendly. It was full of old crap, wood shavings and the smell of engine oil, but with a little imagination it became whatever I wanted it to be..

Then one day in September my world changed forever because I started school, and what an almighty shock to the system that was!

I found myself in a very strange and unpleasant world with people I didn’t understand and who didn’t understand me. From then on happiness was generally found within the pages of a books, watching movies and listening to music. I was able to fully lose myself, and this provided me with some respite from the world.

This ability remained until I had a nervous breakdown in my forties when I discovered that I could no longer concentrate. I couldn’t finish a sentence, let alone a book!

Mental breakdown was inevitable because a life of masking has it’s limits and the mind (and body) will only take so much before it malfunctions. If my life was a movie, you’d see a gradual decent into mental illness with each rejection, betrayal and act of unkindness. The soundtrack, once jolly and uplifting, darkens appropriately. It’s Pharrell Williams’ “Happy” to Radiohead’s’ “How to Disappear Completely”.

Mental illness affects people differently, and I can only speak from my own experience, but I can tell you that it’s the worst thing I’ve ever been through in my life. My entire body malfunctioned, and by the time I completely broke down I was having numerous panic attacks throughout the day and night. I lost almost two stone in weight. One of the worst things, though, was the loss of concentration which meant that I could no longer read, listen to music or lose myself in a movie. To all intents and purposes, I was broken.

That was almost 5 years ago and it’s been a long schlep back to normality, normal for me, that is..

I’ve been telling myself that I’ll be happy when I can read a book in full or listen to a song without skipping it.

I’ll be happy when I feel well.

I’ll be happy when everybody understands me.

I’ll be happy when I can stop the catastrophic thoughts.

The problem is that I’ve been waiting for everything to be perfect before I can be happy!

The truth is that I have multiple issues with mental and physical illness and I am autistic in a world dominated by neurotypical people, many of whom consider me inferior to them. I’ve realised that I need to lower my expectations of what happiness is and remind myself that it’s me who is standing in the way of my happiness, now.

So, what is happiness?

For me, happiness is an emotion that comes from the heart – literally. It’s a physical sensation in my chest. I feel it when I’m with my children. I feel it when I listen to Earth Wind and Fire’s Star. I feel it when I watch the movie Bumblebee.

The trick is not to see happiness as a goal, but to try and find some good in any given situation, no matter how difficult the situation is. In order to do this I have to be present, rather than dwelling on a past that I cannot change or worrying about a future that I have no control over.

All my life I’ve been in pursuit of something that doesn’t exist, as in, perfection in order to be happy, so I’m learning to be happier with who I am and happier with my imperfect life.

I always wanted to be happy, so I decided to be ~ Neil (Nello) Baldwin

More Than a Movie..

I love the movies, they’re pure escapism, and being able to lose myself for a few hours helps to make my existence on this confusing planet a little more tolerable..

When it comes to genre, I favour fantasy films more than anything else and (unsurprisingly) one of the most successful fantasy franchises has been Harry Potter and Fantastic Beasts movies..

When it comes to the wizarding world, I can identify with the ‘non-magical’ versus wizards’ concept because it’s not dissimilar to the NT versus autistic one. That’s not to suggest that I have magical powers, because I don’t – unless you consider photographic memory a superpower? Or how fast I can sprint upstairs when somebody knocks on the door? Nor am I suggesting that there is a war between autistic and non-autistics – it’s just that ‘Muggles and No-Maj’s’ don’t understand the wizarding world and vice versa.

There are many autistic traits to be found in the Harry Potter/Fantastic Beasts films. I mean, Newt Scamander has many autistic traits despite no affirmation from J.K Rowling. Then again, the film is set in the 1920s so Newt wouldn’t have been diagnosed anyway. He would have most likely have been labelled eccentric, or mad.

Harry Potter isn’t an autistic character, but I empathise with the range of emotions he goes through when Hagrid informs him that, actually, he’s a shit-hot wizard and those things about himself that he never understood, such as his hair growing back overnight, suddenly make sense – which is not that dissimilar to receiving an autism diagnosis.

Film or book?

Some people say that films never do justice to the books they were based but I don’t agree with that. Granted, it’s a different experience because films are someone else’s vision whereas we have to use our own imagination with books, but there is generally a score in films which adds a different dimension to the experience..

When we think about Jaws, it’s hard to imagine the film without it’s distinctive score because music creates atmosphere and as soon as we hear the du-du, du-du, du-du-du-du-du-du-DU-DU-DU we know that some poor sod is about to get snarfed by a great white shark, you get me?

Aside the actual films, I consider the credits to be an important part of the movie experience, but time and time again I find that I (and by extension, my family) are the only people remaining in our seats as the last credits scroll up..

It’s always the same. The end of the film comes, the soundtrack kicks in and there’s a flurry of activity with people standing up, coats being put on and a general mass exodus towards the exits, whereas I always watch the credits.

One reason is that I like to see the names of the people who made the film possible. Another is that I’m a music fan and there are often several pieces of music of soundtrack played during the credits. Also, there’s often a little something extra mid-credits or at the very end. Some movies use bloopers and in others the post credit scenes are crucial because it ties the movie up or leaves the audience (or who ever is left) in a state of anticipation.

*WARNING* At this point I’m going to use UP (again) and Christopher Robin as examples so if you haven’t seen those films and would like to, please scroll down beyond the italics.

In the case of the animated film, UP, the credit scenes flip through Carl’s photo album and we get to see the adventures he has with Russell and Dug. As we see in the film, this is what Ellie wanted him to do after she was gone. Blended with the beautiful (and award-winning) score by Michael Giacchino these scenes brings this movie to an emotionally pleasing end.

Another example is Christopher Robin where, after a few minutes of credits, there is a little sequence where all the characters are having a dance and a sing-song on the beach where there is an old man playing a piano. The old man is no other than Richard Sherman – a nine time Oscar nominee and writer of some of the most memorable songs Disney ever made. It’s a sweet touch and one that most people never got to see because they left the cinema as soon as the credits started to roll.

If I hadn’t stayed for the Fantastic Beasts credits, I wouldn’t have heard the fantastic soundtrack. Or learned that Mr Depp had a small army of people pandering to his every need. Or that his scary contact lens had its very own technician..

In my younger days, I’d leave the cinema, go home and re-enact everything I’d seen and then I’d work the characters into a persona using their phrases, mannerisms and style. This is masking, although I didn’t know it then. In those days, I was more out of this world than I was in it – something which my mother would testify to if she were alive because the one thing she observed about me was that I never seemed to be here.

As I’ve aged I’ve been obliged to spend more time in reality so these few hours in the cinema are crucial to my wellbeing. It’s an experience which affects me on every level, including physically, because endorphins flood my body when I watch a movie with a kick-arse weirdo lead character or when the freaks ‘n’ geeks triumph over those who seek to belittle them. But all too soon screen fades to black, the lights go up, and there are a couple of disgruntled looking cleaners giving me the evils because everyone else has gone and they’ve got a shit load of popcorn to sweep up..

So I reluctantly make my way to the exit and walk through the door – back into reality.

Back into the familiar sense of disconnection.

It’s as physical as it is emotional and I’d give anything to turn around and walk back into that room because the cinema screen is the portal to another world – my Narnia – and the only one which I really feel connected to.

“I wish we could go to the movies.”
I stared at him. “We’re in a creepy dungeon. There’s a chance I might die in the next few hours. You are going to die in the next few hours. And if you had one wish, it would be to catch a movie?” ~ Rachel Hawkins, Demonglass

Don’t Fear the Reaper

*Spoiler Alert*

We’re all going to die.

I confess to an obsession about death. I think it comes from being autistic and needing to understand everything that’s happening or will happen to me. I am going die one day so I need to know what to expect.

You have an obsession with death but you’ve had health anxiety? I’m confused.

I don’t have a problem with death, it’s a natural process, after all. It’s the bit before and more importantly me leaving this planet before my job as a mother is done – that’s what bothers me.

Death is still a taboo subject and it’s confusing because people seemingly can’t get enough of watching death in movies but ask them if they’ve prepared for their own deaths and they hastily change the subject or tell you off for being morbid. Do they honestly think not thinking about it will keep death away?

Speaking of which, I find it helps to visualise death as a being Terry Pratchett’s Death. Or how about death as a handsome young man, like Brad Pitt in Meet Joe Black? We wouldn’t be so worried then, eh? Or what if it’s our deceased loved ones who come to take us home?

My belief that consciousness survives death took away my fear of death at an early age and on that subject there are literally hundreds of books to choose from. And why stop at books? There are movies and TV shows set in hospitals and funeral homes, like Six Feet Under.

For those who don’t know, it’s an American drama about a family of undertakers – Fisher and Son. The show begins with the death of the father, Nathaniel. Every episode begins with somebody’s death and some are peaceful while others have you squirming in your seat. We see how death affects the deceased’s families. We see the response to death. We see what happens to the body once it’s in the undertakers. We understand that death is sometimes traumatic and sometimes beautiful. There is a fantasy/paranormal vibe going on where the corpses stand by their bodies and have conversations with the undertakers. This (I think) is open to interpretation. For people who don’t believe in life after death, it can be the undertaker’s inner monologue. For those who do, it’s the spirit of the deceased. Or a mixture of both. It’s a one of it’s kind show that deals with the subject of death. Oh, and the finale is outstandingly good.

The show helps people to understand what happens to their loved ones once their bodies go to the undertakers. It’s helped me because when my mother died, I went from seeing her lifeless body on the floor to her lying in a coffin in the chapel of Rest – what happened in-between, I had no idea.

I appreciated the work that went into making her look presentable, that said, whoever made my mother up was no ‘Rico’. Rico, by the way, was a gifted restorative artist in Six Feet Under. His corpses often looked better than they did in life. I can’t say the same of my mum. Hers was a sudden but straightforward death, it’s just that they back-combed her hair (she NEVER backcombed her hair) and she was wearing way too much blusher for a corpse!

Looking at my mother, I realised that ‘she’ wasn’t in that coffin. Maybe Mum was standing beside me? If she was, I wasn’t aware of it, but then, as a parent I wouldn’t want to see my children so upset either. Come to think of it, if she had have been standing there she’d have been sorting her hair out for sure..

Spending time in the chapel of rest with a deceased loved one makes you realise how fragile life really is and how death can happen to us at any time so we really should get as much out of life while we can.

When it comes to explaining death to my autistic son, I don’t tell him that I will be here forever because that would be a lie. Autistic people are literal and he needs to know the truth in as gentle a way as I can find for his mind to handle. I tell him that I will be here for as long as I possibly can because that’s all I can realistically do. That, and allow him to reach his own conclusions as to what happens after we die.

In contrast, my first experience of death was the confusion that I couldn’t go to my grandma’s house anymore when I’d only been there the week before. My parents protected from me from her death – a loving act – but all it did was confuse me. I understand that Dad would have been very upset to lose his mother, but she was also my grandmother – a person who was very important to me and suddenly she wasn’t there. I needed to know how she died and why. Was she alone? My autistic mind didn’t cope very well with white lies, however good the intention.

I’m not scared of death and there’s no point in worrying about how I will die either because I have no control over it, but that is easier said than done.

Death can be traumatic, it can seem cruel, especially when lives are cut short but deaths can also be a gentle passing from this world to another, or whatever you believe it to be.

Personally I hope my death is like my older sons great-grandfather, Jack..

Jack’s routine was to get up early and make himself a cup of tea. His deathday was no exception. Having made the tea, he sat down in his favourite armchair and no doubt listened to the birds singing in the back garden as he waited for his daughter and her family to wake up..

Death was waiting..

I imagine Death sitting in the opposite chair allowing this hardworking man one last cup of sweet tea before gently stopping his heart. Or maybe it was his deceased wife who came to take him home?

What we do know is that when his son-in-law found him a few hours later, Jack looked like he was asleep, except that his tea-cup was still in his lap. He’d lived a long and happy life and when Death came he went willingly. There was no struggle, just a peaceful end to a long and happy life.

I hope Death is as kind to me and mine (and to you and yours) when our time comes.

Older

 

For the sake of this post, I am borrowing Doc Brown’s DeLorean. (It’s a time machine, kids)

*Back to 1981*

Puberty starts with a bang – literally – because it’s bonfire night.

I find blood in my knickers and presume I’m dying so I scream for my mother whose panic quickly turns to realisation before disappearing into her bedroom..

She returns a short time later with a sanitary towel the size of Wales.

Mum: You’ve started your periods. Perfectly normal. Stick this in your pants.

Dad: Bloody hell!! (I was only 11 so I’m guessing he was about as prepared for it as I was)

Me: So, I’m not dying then?

*Fast forward to 1983*

Me to my Dad: “I’ll NEVER leave you! I’ll NEVER get married!! I HATE boys!!!” (except Nick Rhodes out of Duran Duran)

*fast forward to 1987*

Gets married.

*fast forward to 1988*

Is handed a howling bundle of joy by an extremely cranky midwife with staffing issues. I am smitten! (with baby not midwife)

*fast forward to 1991*

Complete miscarriage at 6 weeks (always in my heart)

*fast forwards to 1992*

Cantankerous old cow of a midwife (been delivering babies since the 1800’s) thrusts a sleepy bundle of joy in my arms. Smitten again!

*fast forwards to 2009*

Limps into labour ward looking like Alice Cooper. I’m in a world of pain but I’m not in labour so something’s obviously up. Within a couple of hours I’m descended on by a team of theatre staff who unceremoniously prepare me for an emergency C Section. I am sedated and a 9lbs 7 oz human is extracted from my mangled womb. I cop a glance and see him pee all over the nurse. Smitten for the third time!

*fast forwards to 2010*

Gynaecological consultant (male) cheerfully informs me that he is going into retirement and so are my ovaries..

I am menopausal.

You fucking what, mate?

Didn’t drop the F bomb but I was thinking it because I was still only 39!

*fast forwards to 2012*

Two years post menopausal – my ovaries have officially retired.

*fast forwards to 2013*

Pelvic floor surrenders. ‘Pissing myself laughing’, literally.

*rewinds back to August 1992 – maternity hospital*

Pleads to have a couple of stitches put in.

“But Mrs A Soul (not really thought the title of this blog through, have I?) we’ve already given you three stitches!”

“STOP TALKING AND THROW A FEW MORE IN FFS!”

*fast forwards to 2012*

  • Cravings for comfortable shoes, oversized tops and middle-aged gardeners.
  • Buys Tena Lady’s by the pallet load.
  • Displays erratic, bordering on psychotic, behaviour.
  • Forgets stuff.

*Fast forward to 2015*

Has a mofo of a nervous breakdown where my NT mask literally falls off and thanks to an observant A & E psychiatrist is sent for autistic assessment.

*Fast forward to 2016*

Diagnosed autistic. Everything makes sense, finally.

*Fast forward to 2019*

Diagnosed with fibromyalgia, arthritis and disc disease (If I was a car, I would in the scrap yard)

*Set the clock for 2020, I’m comin’ home!*

Now I am almost 50 and despite my body disintegrating faster than a dunked Rich Tea biscuit (only with less finesse), I am more comfortable with myself than I’ve ever been.

Time changes you physically and mentally. Life changes you. You see your loved ones get ill and die and you know that one day it will be you in that coffin (not the same one, obvs) and suddenly your perspective shifts to what really matters. Yes, my tummy is doughy and spills over my waistband in a very unbecoming manner but when I see the silvery stretch marks of pregnancy and the c section scar which spans my lower abdomen, I remind myself of why they are there.

Lets get philosophical…

Kintsugi is the ancient Japanese art which repairs chips and cracks in pottery with fine gold, silver or platinum. Rather than rejecting or hiding it’s flaws and imperfections – they are highlighted and the object is considered to be more even beautiful than before. This analogy resonates with me because I have worked in a potbank, except that our cracked pottery ended up in a massive skip..

Anyway, back to Kintsugi – this is how I choose to see my scar and stretch marks. I embrace them for what they are – a beautiful reminder of the three boys who call me ‘Mum’.

Despite all the crap, I like being older. I wish I wasn’t chronically ill, obvs, but I like this version of me. I’m battered and bruised and some bits are technically broken but I am authentically who I was born to be.

Don’t you think I’m looking older?

But something good has happened to me

George Michael ~ Older

Autism, Chronic Illness and the Ignorance of Twits

Hands up all those autistic people who have a chronic illness?

Making an educated guess based on time spent on fibromyalgia and chronic illness Facebook groups, I’d say that a lot (if not most) of us do.

This doesn’t come as much of a surprise to me because conditions such as fibromyalgia, CFS (chronic fatigue syndrome, M.E) etc are generally triggered by stress and I don’t know of any ‘highly functioning’ (sarcastic tone) autistic person who doesn’t have at least one mental health condition..

Having existed as an undiagnosed autistic human up to the age of 46, it’s understandable that the amount of stress my body has been subjected to over four decades has taken it’s toll and the result is that I have fibromyalgia which a very painful and life-affecting condition.

You know what one of the worst things is?

It’s that people don’t believe I’m ill.

Just like people don’t believe I’m autistic.

This is because people make judgements on what they can see based on what they know, or don’t know.

I am a wife and a mother and I’ve held jobs down – therefore I can’t possibly be autistic.

Almost every medical test has come back clear. There is no visible cause of my pain and unless I’m wearing make-up – I don’t look ill.

The autism thing? I was so very relieved to finally have an explanation as to why I struggle to do ‘life’ and why I’ve never fitted in, but then came the ignorant neurotypical crap and so called ‘friends’ (and a family member) deleting me from their lives because suddenly I wasn’t good enough. The fact that I was born autistic and have been autistic all my life is lost on them..

It hurt, but then I realised that I don’t want such toxic people in my life anyway and so I thank them for removing themselves from my life.

Three years later, and after 8 years of symptoms with no idea what was wrong with me, I was diagnosed with fibromyalgia and anybody who has this condition will know that there are people, including some so called professionals, who do not accept it as a condition.

Fibromyalgia, also known as fibromyalgia syndrome (FMS) symptoms are very similar to MS (multiple sclerosis) symptoms, which is why a lot of people are misdiagnosed’ but the difference is that MS shows up on imaging whereas fibromyalgia does not. The diagnosis is one of exclusion and if you’re lucky you’ll be seen by somebody who has understanding of the condition.

I was lucky. I was seen by a rheumatology consultant who believes that the condition is caused by a problem in the hypothalamus. There are a few different theories but this one makes sense to me because of how stress affects the hypothalamus and it’s role in the human body. Before I was diagnosed (and before the hypothalamus was even mentioned) I told my GP that it feels like something in my brain is ‘stuck’ and that my body is constantly releasing stress hormones, even when I’m asleep.

Just because the powers that be can’t agree on what’s causing the condition, this doesn’t mean that the condition doesn’t exist or that it’s all in the mind. I can assure you, it’s not all in the mind. The pain is real and pain can be measured – which is why a lot of us have blood pressure issues because pain raises BP.

Some of the comments I’ve seen on social media highlight the ignorance of this condition with people telling us to ‘stop moaning and do some exercise’.

Yeah, if only it were that simple, mate!

Nine years ago, I was active – a grafter. I had an appetite. I rarely needed painkillers. Now, I am in pain all of the time and that pain generally cannot be managed because of sensitivity to medications. I haven’t had a decent or restful night’s sleep in 9 years. I have nightmares. I wake up numerous times a night with my body flooded with stress hormones. I have migraines which last for days at a time, IBS, arthritis, tachycardia, osteopenia, disc disease, chronic constipation, pelvic floor disorder, neuralgia, anxiety, depression, premature menopause, atrophy (inside and out), bone pain, muscle pain, itching, nausea, headaches, twitches, brain fog, tinnitus, dizziness, food and medication sensitivity/ allergies and the list is endless..

There isn’t one part of my body that works properly, not one.

Some symptoms overlap, others are due to the natural wear and tear that comes to us all with age – the difference being that my body is hypersensitive and I experience a lot of pain whereas healthy people experience little or none at all.

I wake up some days and feel that I cannot take another day of pain and I never know from one day to the next how much pain I will be in or what part (s) of my body will be inflamed. I cry and feel nothing but despair, then I pull myself up by my pants and carry on because I have people who need me, even if it’s me at my Z game.

One of my biggest problems is that people just don’t take chronic illness seriously – especially invisible conditions like mine, but the reality is this:

Patients with chronic pain are twice as likely to take their own life.

Physically – chronic pain is debilitating.

Psychologically – it’s soul destroying.

As if life isn’t enough of a shit-storm, there are people around us who show their ignorance, instead of their support.

When somebody tells me that It’s ‘all in my head’, I visualise murdering them with what little strength I have left!

When people tell me that ‘I’ll fine once I get out of the house’, I like to imagine them sat on the toilet having the horror of all shits because they’ve resorted to constipation inducing codeine having reached the conclusion that they cannot take ONE MORE SECOND OF PAIN!!

But then I remind myself that, actually, it doesn’t matter what these people think and I refuse to spend another second (after I’ve written this post, obvs) in stressing over their ignorance because, at the end of the day, I have a letter with an NHS stamp on it that says Diagnosis: Fibromyalgia.

In conclusion..

Decades of suppression, fear, anxiety and the traumatic loss of my mother led me into chronic illness.

It’s real.

People can accept my autism and my illness, or not, but I will lose no more time over their ignorance.

The highest form of ignorance is when you reject something you don’t know anything about.