Known by many, loved by few.

That’s a twist on a regular diagnosis of ADHD sufferers (something, thankfully, I don’t suffer from) the typical way of describing someone with ADHD is ““known by all but liked by none” which is actually quite cruel if you consider it for a moment.

I read that and considered my own interaction with friends. I’ve only known about my Aspergers for about a year now but as a child I didn’t make friends easily. If there was a pecking order for bullies then I was at the very bottom of the pile. I was bullied mercilessly by everyone including some of the female students.  I had a terrible speech defect (to some extent I still have it, although 47 years of practice means I hide it very well) and kids (being the cruel little monsters they are) picked up on it and all through primary and secondary school my nickname was “Stutter”

Not everyone was a monster or a bully though. There was one girl, Kaye – sigh – I honestly thought we’d marry back then. Ah the innocence of childhood eh! Of course, to marry it is USUALLY preferable for affection to work BOTH ways XD Not being very good at reading emotions I didn’t actually pick up on that. I always got the impression she “liked me” but probably much in the same way as a child likes a dumb dog or cute idiotic little hamster hehe.

Anyway, we grew up. One cannot prevent that no matter how one tries. Primary School gave way to High School, High School gave way to University, and University gave way to the endless trudge of working for a living.

For 47 years I’ve found making (and more importantly keeping) friends very difficult. I’m what can only be described as “odd” or “peculiar”. I’m prone to emotional outbursts and don’t like letting people into my internal “fortress of solitude”. I’m standoffish and shy, bordering on rude at times.

I don’t like social events, I don’t like lots of people milling around or chatting (see my previous post for a recent example) so naturally I don’t tend to socialise much.

The fact that I somehow met a woman who loved me enough to see past my hang-ups to actually marry me is amazing. But she’s a social butterfly. She dances, she goes to the WI (Woman’s Institute) , she has MANY MANY friend who she contacts and visits regularly. Me?  I have her.

Well, ok I DO have other friends. People from University I feel comfortable around. They were my best man and ushers at my wedding. I never contact them, never see them, occasionally I’ll post something on my Facebook page that mentions them but I know they’re there. They’re not expecting me to chat or call. (When I do occasionally telephone I’m always at a loss for things to say anyway XD)

Then there’s my circle of VF’s (Virtual Friends.. a term my wife coined for me) These are people I chat with on Twitter. They have names, they ALL have names, but we don’t use them. It’s all MightyMycroft this and Diceman3000 that or BizarroMan10 the other (Those names are made up btw) there’s a level of detachment about them. Doesn’t mean they’re not important to me. They are. But they’re not “REAL” in the tactile sense. I’ve never met any of them, I have no intention to ever meet any of them, I care about them and their problems. Even going as far as helping them out when problems strike, but they don’t REALLY know me. They know a VERSION of me. Edited and spell checked (mostly) , Puns carefully thought out and delivered with rapier sharp (but controlled, planned and restrained) intellect . They get the cardboard cut-out of me complete with sound bites and bad jokes. They get the image I project onto Twitter. It’s no more me that the image on a movie screen is the actual actor whose movie you’re watching. It’s two dimensional and ever so slightly fake.

I have my wife but am I lonely? Perhaps? Yes AND No. I know that’s a contradiction but I like my solitude. I like going to the movies by myself, I like going to Cosplay conventions on my own. But part of me aches for the connection. I see friends playing online together, or meeting up at games conventions and the likes. I want to be able to share in that warmth but I can’t I’m too isolated. It’s a barrier I can’t get over. I have my soul mate in my wife; I should be content with that.

Sadly part of me is still that 8 year old boy standing on the edge of the playground watching other kids have fun playing chase and wishing I could join in.

Of Meltdowns and Men

(My apologies to John Steinbeck)

Well, what can I say? I’m an aspie and I have pronounced aspie traits. I’m 47 years old and tend not to throw tantrums these days when things get a bit out of hand, however that doesn’t mean I’m 100% immune from the looming spectre of the dreaded aspie meltdown.

At the weekend my wife and I drove from London to the Guilford area for a friend’s 50th birthday bash. Although I was hesitant and somewhat dubious about going to a party I decided to attend because (a) I like the friend in question (one of my Wife’s oldest friends I’ve ‘adopted’) and (b) I thought I could handle it.. After all how bad could it be?

Oh dear!

We arrived at the venue and it was quite small with benches round the outside and a couple of tables with buffet foods laid out. They were playing 80’s pop hits on the sound system and it was all very cosy and friendly – initially! Not everyone had arrived yet and we were some of the first people to turn up. More and more people started to arrive and floor space began to get eaten up. I found myself being unintentionally ushered up against the wall between a bench and the buffet while people split off into groups and chatted noisily around me. My wife is off chatting to some old friends and I’m standing there, trapped with no route out.. no, that’s incorrect, I had a route out. I just needed to say “Excuse me” and move. Of course, 20/20 hindsight is a wondrous thing. No instead I stood there feeling increasingly more and more anxious while being bombarded by music too loud for the size of the venue and the oppressive mix of multiple conversations battering my senses.

My wife looked over and her face dropped. I didn’t realise it at the time but according to her “post mortem” of the situation I’d started rocking and fidgeting with my fingers and cuffs. My “tell” is when I start constantly wringing my fingers over and over while keeping my arms tight up against my chest. When I’m really stressed I rock back and forth slightly, the faster I rock , the more stressed I’m getting.

I was at the brink of screaming when my wife grabbed me by the arm and guided me out to a quieter back area of the café/bar where the party was being held. But alas the damage was done. I was shaking, I became non vocal, was rocking violently and was chewing on my fingers.

People kept coming over to see if I was ok, unfortunately sitting down next to me and putting their arm around me didn’t help my feeling of being trapped. My tactile defensiveness was cranked up to 11. In the end, the proprietor of the establishment let me out the back of the bar – there was NO way I’d be able to walk through the crowd again. Luckily My wife and I were staying in a hotel across the road for the night so I had a bolt hole. I dread to think what would have happened if we were driving home or were staying miles from the party venue.

I felt awful. Not only had I ruined my night, I’d (perceived) to have ruined my wife’s night, my wife’s friend’s night and the night of her guests. As it transpires my wife informed them of my problem and they were all quite understanding.

I hate letting myself down like this. I’m 47, I feel I should be able to cope. I was supposed to be going to the MCM comic con this month but that’s a no go now. I can’t even begin to face several thousand people in a loud crammed exhibition centre.

As I get older I find myself getting increasingly isolationary. I seem to be losing the ability to cope with crowds. It’s a worrying trend and one I need to keep an eye on. Perhaps it’s not just me though? Perhaps other aspies have the same problem. Or perhaps.. going back to John Steinbeck..

“Maybe ever’body in the whole damn world is scared of each other.”

John Steinbeck, Of Mice and Men

What is Normal Anyway?

Warning! This is a long stream of consciousness post! You have been warned ;p

A thread on Twitter yesterday gave me cause for thought. One of my VF’s (Virtual Friends) was discussing in a somewhat heated exchange about the term “Neurodiversity”. As is the case with such internet based discussions it was very black and white and the argument was between Neurodiversity being an important term for people with mental illness conditions or, as my VF put it, A meaningless umbrella term. Now I’ve used the Neurodiversity term myself. So my initial reaction was one of “HOW DARE YOU!” but thankfully a few seconds of thought and I could see his point of view. I didn’t necessarily agree with it 100% but at least I could see it.

His argument boiled down to stating that, at some level, we ALL have some sort of difference to what’s perceived as “Normal” and he questioned what “Normal” is anyway. Statistically speaking Normal is the average, the peak of a bell curve.

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The “Normal” Bell curve

 

Normal is clustered around the warm comfortable middle with the majority of everyone else, patting yourself on the back and saying how good it is to be exactly the same as everyone else.

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My Bell Curve.

 

There’s one small problem with that, namely, it’s a lie ! Most humans (I assume you, gentle reader, are human? if not I for one welcome our new alien overlords!) are born with two legs, two lungs, two arms, two eyes etc,etc,etc. The average human is therefore depicted as such. However some people for whatever reason, illness, injury , whatever are born without 2 of some of these. So even if 999,999 people out of one million have two legs and one person has one, statistically speaking the average number of legs IS NOT TWO.. it’s 1.999999 ! as I certainly have two legs I’m therefore ABOVE AVERAGE in the leg department. I’m Leg Divergent. I’m also Eye Divergent, Lung Divergent and Arm Divergent. In this case being above average is the norm! (Obviously this is all facetious as in this situation we’d use MODE not MEAN but it’s illustrating a point)

Let me attack this from another direction. You are unique and totally, wonderfully, indescribably unique. In the entire history of human existence there has only ever been, and will only ever be, one of you. Speaking as a mathematician the odds of you existing at all are so mind bogglingly infinitesimally small that, statistically speaking, odds are you shouldn’t exist.

Don’t believe me? ok Big bang. Matter had to form; fluctuations in gravity had to cause matter to clump together in JUST The right way to form stars. The stars had to form in JUST THE RIGHT WAY to create all the nice heavy elements like carbon, iron etc. that make up our bodies. Not only did the stars have to go Supernova to let all that heavy element goodness out, they had to reform later to form solar systems.

Jump forward a few million million years.

The newly formed Earth had to be JUST the right distance from the Sun, not to close, not too far away. It had to be JUST the right size to get JUST enough gas to accumulate around it to form an atmosphere.

Jump forward a few million years

The right chemicals had to mix to make life, that life had to survive all manner of apocalypses and disasters, to eventually through many millions of years, evolve into some sort of “intelligent” life form.

Jump forward a few hundred thousand years.

At some point your great great great great great great great.. <some time later> ..  grandfather met a woman he quite liked and bingo – conception! of all the people he or she had to meet they met the ONE person that would be your distant ancestor.

Every child HAD to meet JUST THE RIGHT PERSON at the RIGHT TIME down the generations. Any difference and you wouldn’t be here right now. Someone ELSE might be here, but it wouldn’t be you.

Jump forward to the day of YOUR conception. Of the 100 million or so sperm that attempted to reach the egg ONE made it. That egg fertilised and bingo.. There you were.

The sheer number of things that had to be exactly right to produce exactly the person sitting there, reading this and wondering “What the hell is he on about?!” right now is mindboggling.  You are unique. So is everyone else. We’re all unique and infinitely precious. Saying you’re exactly the same as someone else diminishes you in ways you cannot comprehend.

No one is “average”, everyone is “unique”. In a world where above average number of limbs is the norm, uniqueness is “normality” We’re all different. It’s not a world where things fit into a binary classification system.  Black or White? I’m Scottish so naturally pale blue 😉 my Father is 1/2 Scottish and 1/2 Mediterranean descent. He’s naturally darker skinned than me.  It’s not “Straight” or “Gay” either. I’m a happily married Cis Gender Male. Am I straight? Mostly? Yes! Completely? No. I find some men attractive. I happened to fall in love with a woman and married her.  I’m not planning to change that. Am I BI? Nope. I am not any of these labels. Imagine a rainbow’s spectrum. Where EXACTLY does Orange end and Yellow begin? How do you decide to label something as Red, Orange or Yellow? Who gets to decide? Sexuality is a spectrum, Mental conditions are a spectrum. Within that, Even Asperger’s is a Spectrum. Am I EXACTLY the same as someone else with Asperger’s? No.

I’m a totally unique individual with a unique genetic makeup. There is NO ONE else exactly like me. My Sexuality is my own, My mental issues are unique to me. I may be SIMILAR to other people in certain aspects but I’m a singular entity. I may divert from the norm in terms of many things .. but then so does everyone else!

Neurodivergance is a catch all umbrella term that, ultimately, is meaningless. Normality is also a catch all umbrella term that is also meaningless. We’re all on the same planet together, all dealing with our own challenges and triumphs, we all have strengths and weaknesses. Isn’t it about time we stopped the whole “Us and Them” mentality?

There is no “Them” there is only “Us”

Asperger’s, Ageing, Anosmia and my Amazing Anomalous Auditory Abilities.

(what can I say? I love alliteration!)

I’m 47 and although I only found out about my Asperger’s last year I’ve known pretty much since the age of 5 I was different. I was born with congenital anosmia. That is, The complete and utter absence of ANY sense of smell what so ever.

When I was being born, My mum was in the ward and my dad was outside watching the live broadcast of the Apollo 13 launch on BBC 2 . My claim to fame? I’m 5 minutes “younger” than Apollo 13.  However, neither my mum nor dad expected to be there … I was 8 weeks early.

To be fair, to this day I still don’t know if either my anosmia or my Asperger’s were caused by my being 2 months premature. It was a very worrying time for my parents but (obviously) I survived and thrived into adulthood.

I don’t know when I first really realised I had no sense of smell. I didn’t know what it was so therefore didn’t know I didn’t have it. I guess that sounds odd but as a child you see someone inhaling through their nose and saying something smelt nice. So I’d do the same, I guess I thought that’s what you had to do. Inhale air through your nose and tell someone they smell nice. Growing up without ANY sense of smell hasn’t been easy but then it hasn’t really been difficult either. It’s different, I’ll grant you that. I’ve been ill due to food poisoning many times from eating cold meat that’s gone off (I was vegetarian for 9 years due to that XD) I no longer drink milk straight from the carton (for obvious reasons that’ll be apparent if you think about it for a second) I have smoke and gas alarms ALL OVER the house and I NEVER wear deodorant or aftershave. I like being clean (overly so.. to the point of it being a problem to be honest) but I NEVER use anything with a perfume. I use plain unscented soap and nothing else.

However, something odd happened. Some doctors think it’s due to my lack of smell. My brain has extra “processing space” available. Some doctors think it’s part of my Asperger’s side (at least since last year) but I have incredibly acute hearing, My wife goes as far as calling it almost superhuman. I found out about that in more detail when I started employment in an off shore engineering company. I went for a full medical which included a hearing test. Apparently I shocked the doctor as I was pressing the button on hearing the test tones which were used to calibrate the equipment.  I hear things long before most people and I find sounds more uncomfortable than most.

These three conditions, Asperger’s, Anosmia and my Auditory anomalies mean I’ve felt both cut off from the world and besieged by it simultaneously. I cannot connect to things the way you do. I may as well be enclosed in a smell proof impermeable bubble. I feel I can never actually connect to something. Conversely the world is a cacophonous place. Right now I hear the fan hum of the air conditioning, the clack clack clack of the keyboards of everyone in the office, the guy in the cubicle next to me breathing and sighing, two conversations at the far end of the office (I’m on lunch by the way XD) and traffic noises outside. I wear headphones which play white noise to block out distractions. When I have one of my occasional migraine attacks my hearing explodes into full blown Hyperacusis and every sound causes me pain.

Like all things I see both my hearing and anosmia as blessings AND curses. They each give me benefits and they each cause problems.  I’ve been diagnosed as being on the autistic spectrum for less than a year now. I suppose I should see this in the same light and treat my Asperger’s as a blessing and a curse too. I’m still getting to terms with my diagnosis. It’s not 100% part of me or my life story yet but I’m fitting it in.  Being able to share my story people like you helps enormously.

Thank you for being here.

Of Fidgets and Things

Fidget Spinners.

Love them or loathe them they’re everywhere at the moment. There’s been quite a hoo-hah on social media about them. Some people saying they should be banned, others staying they’re useless and pointless and others again stating that they’re a useful stimming toy and it doesn’t matter if you’re neurotypical or neurodivergent .

I was a late diagnosed aspie. It wasn’t picked up until I was 46. That’s really quite late but not as late as some. I never knew about asperger’s or autism at school and I certainly didn’t know anything about stimming or stim/fidget toys. But just because I didn’t know about them doesn’t mean I didn’t use them. When I was stressed or anxious I’d go to my favorite toy, my very own fidget cube….

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or at least.. several of them !

As you can see it’s a particular toy I’ve never really grown out of. I find “playing” with these immensely satisfying and relaxing and in times of stress I still reach for a cube (or two) and solve it.  I do also have a 4 x 4 x 4 but alas it’s “a bit worse for wear”  after being inadvertently left on a bright sunny window sill.  As you can see the oranges look like yellows and the reds look like oranges XD It’s a bit faded but hopefully I’ll be able to replace the stickers at some point.

faded

But the object of this post isn’t just to show off my sweet cube collection 😉 it’s to illustrate a point. Even before I knew I was on the autistic spectrum, long before I knew what stimming was, I was doing it and getting a sense of calm and satisfaction from doing it.
So , so what if fidget spinners are a fad and will be forgotten like loom bands in a month or so? So what if the majority of people playing with them are “neurotypical” (although what IS neurotypical anyway?) if it’s fun, and relaxing then let them spin..

if you excuse me I’m off to do some spinning too..

U R U’ L’ U R’ U’ L

if you get my spin 😉