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

Oh Dear….

I had an “interesting” conversation with a colleague today. The subject of Autism came up and as in the course of the conversation I mentioned that I was on the spectrum and that I have Asperger’s. I present the conversation as best as I can remember it here.

“You realise that I’m Autistic? At least I’m on the spectrum. I have Asperger’s Syndrome”
“You? no you don’t”
“er.. yes I do!”
“No, you don’t you can’t have Asperger’s Syndrome”
“I do. Why do you say I can’t?”
“Because you’re normal. You’re not weird or anything!”

at this point I start laughing.. not because I find what he’s saying funny or even amusing but out of sheer disbelief

“I assure you. I’ve been diagnosed with Asperger’s Syndrome by a number of medical professionals. First my Doctor who sent me to a specialist and secondly by the specialist who said, in no uncertain terms, I was not just slightly on the spectrum.. but SLAP BANG IN THE MIDDLE OF THE SPECTRUM”

what he said next , stunned me into silence.

“Nah! they’re wrong. They don’t know nothing!”

So there you have it folks. I’m obviously NOT on the spectrum because I’m “not Weird enough” and two Doctors/Psychiatrists don’t know diddly-squat when compared to the vast intellect of a software developer.

I walked away at that point. I might have started throwing things otherwise XD

Please.. someone stop the planet. I want to get off.

Welcome to your new Aspie user guide.

Thank you for purchasing this 1970 Model aspie. With care and attention to details you should have many years of quality friendship from this model. To maintain your model at optimum efficiency it is beneficial to familiarise yourself with these simple guidelines.

1. Be Understanding : Remember things you take in your stride and find easy may prove challenging or even upsetting to someone on the autistic spectrum.

2. Be Consistent : This may mean doing the same routine things over and over and over. You may be bored but to your Aspie friend this may be comforting. Also be aware that if you want to encourage your friend to try something new or unfamiliar you will need to do it at their speed. If they don’t like it don’t force them to stay.

3. Be Patient : An aspie’s reluctance to change may be perceived as stubbornness. They’re not being difficult just for the sake of being difficult. Try and understand their point of view without anger and try and present your arguments in terms they can relate to. Often stubbornness to change is a result of dealing with the unknown, giving them more information which they can absorb at their own speed can often (but not always) change their minds.

4. Be Proactive : If you are waiting for your aspie friend to contact you.. you might wait a while. They’re not good at instigating social situations. if you want an aspie friend to meet up try choosing a quiet low key place where external stimuli is at a minimum. Smaller crowds are better than large ones and don’t suddenly drop the decision on them.. give them time to mull it over and prepare themselves mentally for it.

5. Be Strong : Don’t get upset if you ask your friend if they’d like to do X, Y or Z with you and they reply along the lines of “No, I’d rather read this book/Watch this TV show/Listen to this Album” it’s nothing personal. They may not be needing social contact right now. A little goes a long way with aspies. They’re not trying to be offensive, just being honest.. which brings us to..

6. Be Honest : Aspies are not good at reading between the lines. If you don’t want to do something like see Rogue Squadron for the 15th time that week, when asked say “No I’d rather not” instead of “oh do what you like!” because if your average aspie hears that, that’s EXACTLY what they’re do. Communicate your thoughts, feelings and upsets clearly as possible.

Finally

7. Be Honoured : Aspies don’t make friends easily. if you have an aspie friend it’s because you’ve met every one of their list of exhaustive criteria. They trust you and feel safe around you. A friendly Aspie is a loyal Aspie. Once you have an Aspie friend you’ll find them to be a deeply caring friend. Remember you may have many many friends but the Aspie in your life may only have a couple. You may even be their ONLY friend. That’s quite the accolade.

By following these 7 simple steps you should have many happy years of aspie friendship. Just remember to check the underside for rust and oil occasionally for fault free operation.

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….

IMG_20160304_213210

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 😉