My Blog (or my ramblings; soap box, thoughts…add your own word here!)
The pursuit of happiness and the inner circle
Now don’t get me wrong the feeling of wanting to be liked or what others are saying, thinking and feeling about you is not a complete alien concept to me. I just find it quite hard to comprehend.
I do realise that having autism does indeed help in this situation. Not understanding the social interactions between people, the unwritten rules, the ways and wherefores does contribute immensely to this way of thinking.
Now when I say what others are feeling or thinking I do not mean in the wider sense of the word. When I say it I am on about the ‘inner circle’. Think of it like King Arthur’s round table. Who was in his inner sanctum and sat at that table was his choice. Not only that he valued their opinion and cared about what they thought of him.
This is my point. They were in HIS inner circle so he cared about what they thought, felt and perception of him. I am of course using this as an example. Don’t all start rushing out to get me a higher dose of medication as I’m now hearing a dead king’s inner thoughts!
I truly do believe that this is one the base values to happiness. Now of course it’s not the only one and life is never that simple; but in my humble perspective it’s one of the foundations.
Now there is one problem with the ‘inner circle’ it needs very good barricades and defences in order to work properly.
The wall surrounding it needs to stronger than that of Jericho, I mean Joshua fought that battle and knocked that wall down!! In fact; it needs to be impenetrable.
Most people if you ask them about friends will have a fair few people in mind. Now to me there are true friends (of whom I can count on one hand) and then there are acquaintances. Now this is when problems can occur. By treating and viewing an acquaintance the same as a friend.
By trusting them the same way. An acquaintance should just be that someone who you know from seeing around. Maybe say hello too. Stand at a bar and share a pint. Do that ‘small talk’ that normo’s are so bloody fond of!! But please PLEASE do not let them know any secrets or how you tick or what is going on deep down. That is reserved for you inner circle.
Think of this as survival instinct. You often hear ex-con’s saying a similar thing. I keep all my secrets in my head where the screws can’t get them.
The inner circle is special and sacred. Its also the part of your life where you can be most vunerable.
Therefore be VERY careful who you welcome into the inner circle and make sure your defences are strong. As if it’s attempted to be knocked down (normally unawares; a wolf in sheep’s clothing will appear) then if it’s strong and solid no amount of trying to destroy it will work.
Having Autism I see it like it is………..
These past few weeks or so there certainly has been a fair amount of twattish behaviour!! And in this environment we all need a giggle or two!!……
The Coronavirus outbreak has just helped illustrate the sheer amount of twats this country contains. It seems to be broken down as follows:
People that think we should be on permanent lock down = Overreacting twats
People buying 200 bog rolls and 3 litres of hand sanitizer = Brain-dead ,Selfish twats.
People fighting over toilet roll in Asda and other well known places!! = Twats that nature is trying to kill off before they breed when it send these viruses.
People that then sell the sanitizer on eBay for £30 a bottle = Greedy twats
People wearing face masks in their own homes = Paranoid twats
People who think Coronavirus is caused by 5G = Tinfoil hat twats
People thinking schools should be closed = Unemployed twats
People that just wash their hands and don’t worry too much because it’ll all calm down in a few months = Clever twats
The government = Twatty twat twats
People going to the doctor’s with cold symptoms even though they’ve been told not to = Total fucking Twats
I despair at the twattishness of the people I have to share this country with. Chill your beans wash your fucking hands and stop stockpiling shit like the world is ending. If the virus is as deadly as you seem to think (which we now KNOW it is) then no amount of Andrex and dried Penne pasta is going to save you.
END OF RANT!!!
Emotional spillage in aisle 1
Looking at a family picture there is me my partner James, my sons Daniel and Noah there is nothing extraordinary to the the outside world .
This simple trip to the local woods has taken methodical precision
1 we had our hourly check with Alexa what the weather is in America , Canada London and Huddersfield .
2 we compared this with google weather and had a argument with both servers as they are saying different temperatures and times when its going to rain .
3 we looked out of the window and had a mini meltdown as its a bit windy and neither the above said it was going to be windy .
4 have we got our boots on the right feet? even though mum has tried to help but I know best even though my feet look like ducks feet.
5 are we going to be back in time for lunch as we have lunch at 12 pm .
This is a normal proceeder in the household of Noah a 10 year old autistic boy with a very big interest in the Weather Alexa is the answer to everything and he enjoys filming role play with his paw patrol figures .
The whole family routine is regimental and revolves round using same washing powder inc brand where you buy it from , same soap and perfume as that’s what my mum smells like .
The weekly food shop is buying the same brand and we have to go to Aldi .
when we come home we have to go on the tablet watch the same episode of same program and have our tea at the same time and the same food on a certain day .
Sounds simple dosen’t it . Lets through a global pandemic in to the mix .
School now is home schooling this leads to many confrontations for example your not a teacher so you don’t know and you are my mummy not my teacher .
We have to stay 2m apart so why is that woman near me mum don’t she understand
the weekly shop is a nightmare other people fighting over toilet rolls I am dealing with a crisis of my own Aldi have run out of the sausages we usually get. This has resulted in emotional spillage on aisle 1 mum is trying to stop her teenager who has ADHD bouncing around as he forgotten have his medication and Noah is demanding a answer wants to speak to the boss to arrange a emergency delivery of sausages as its the day we have them for tea .
I really couldn’t make this up but living with a child with a specialised need you end up with a dry sense of humour.
Noah was always different when he was a baby we noticed he didn’t really have eye contact he hated when I changed my perfume and the differences where more noticeable when he was a toddler as he didn’t want to play with others he like the sensory room at the local sure start that seem to be only thing to calm him down and make he relax . He was behind in a few steps but in my eyes he was just learning in a different way and pace . Maybe because Noah is my 3 rd child and my eldest child who is now diagnosed with ADHD was delayed in his development and I was a nursery nurse before I was a mum so I just new little signs but this dosen’t make it easy . I am going to be honest many night I cried why wont my child hug me as he didn’t like hugs I thought I was a bad mum but as time has gone by we have developed a few unique ways we have a way of saying I love you using our version of signs and saying funny things only we know or even rubbing noses for kisses this to this day (but not in front of others as he is a big boy) make me realise how special he is .
Roll to about 2 and half years ago I am sat in a bar discussing about Noah and the joys of autism and how other people judge with there expectations of how everyone should conform to the same thing in society and a child isn’t allowed a opinion (try explain that to someone who sees the world in literal and straight talking ) a guy who I had commented was cute to a friend before looked up and said I understand where you son is coming from I looked to him and said Oh do you have a child who is on spectrum he said no I have autism myself and showed me a blue card he had in his wallet . We spent the evening discussing the world on point of view of mother and a person whom is autistic in the end I gave him my number and the chats started from there .
In time me and James grew closer he helped me to see the world from Noah perspective and we found out we had lots personal things in common like music he told he was a musician as well after a while we decided to become close friends and this developed into a romantic relationship .
From 10 may 2020 we were a couple I thought I could handle a partner with autism as its in our normal family life how wrong could I be.
James is brutally honest, kind , caring no malice at all . His time keeping is great and he is funny even if sometimes its at inappropriate times .These are positives . He is also dedicated to his music and gaming but if this crosses over to doing something like shopping he can switch off . If I want to browse in the shop James will sing or dance in the middle of the store cause he is overstimulated . Or he can walk in the shop go straight to bin bags and washing powder as that’s the 2 things we really need and browsing is not on his agender so why am I putting candles etc. in the basket .
I have found with both James and Noah everything is literal and direct if they have a point of view its the only way and the slight change can be a really big deal . A big example has been in lockdown when they said No one can meet unless in support bubble and no other household could mix Noah thought he was breaking the law (me and his dad have shared custody)so I showed him the exceptions he just got more and more confused, so we did a step by step plan I could understand from both there views.
Also Having a conversation and using certain phrases e.g. I would be talking about a conversation I herd I would say she goes something James will ask where did she go or he will correct me and say she didn’t go anywhere she said that.
I’ve got frustrated when I have asked James to load the washer it my take him 1 hour to do it but if I want a shelf put up he do it in 10 mins as he doesn’t see housework as a priority. A classic one is you vaced this morning why you doing it again I would say well kids have got crumbs on it he would say its not important though is it . Or why bother making bed it only get messy again.
I must admit these things drive me crazy but I must admit sometimes he is right .
James is a fantastic planner and remembers things like special dates times and places I want to visit .
He also remembers conversations and if you say it wrong he will say actually you said that at 12 pm on the 1st Jan 2020 and we were in your living room you were wearing your blue hoodie . This can come across as him being cocky and frustrates the hell out of me .
I must admit it can be tiring at times and drives me crazy but I wouldn’t change Noah or James as having autism in my life has made me see the world in a different way.
The spare change is 11p
The spare change of my mind is 11p. 11 is a prime number; indeed that being a number that can only be divided by itself. Often where my mind is. It can only be divided by itself. It’s itself that causes the most torment, the most heartache ; the most to prove in a way.
It’s my double bubble, that one of autism that rears it’s ugly head again (well not ugly more just something else to deal with on top) and lands me in peril. The downside I am on about here is that of not liking change. Change in this case being a change of circumstances. Well not liking might be somewhat of an understatement! Not being able to cope; not knowing how to deal with it; not knowing how to process it would be more accurate!
So here in lies the difficulty. Especially when in mental distress. Okay some come and go. My phycosis tends to come and go. I make it sound like a double glazing salesman! Yeah, it can hang around like a pesky little thing it is, but in terms of pure time, it’s nano quick compared to when I am in a depressive state.
Here in lies the dilemma. Not liking change as I do, in order to try and get out of said depression requires a few things. Medical intervention; willpower and well a change in circumstances. Okay, it’s a good change in circumstances and would be most welcome but it is however a change. It’s quite hard to explain this. You want to get out of depression; there’s nothing worse. Yet, I am also diagnosed with autism. So I really want to be out of this state yet find it very hard when there is change.
Depression in a way has become the norm. When it’s been hanging around for a fair few weeks or even months; that has in effect become the norm. And, then as I mentioned before there’s the change on top. So it’s a complete oxymoron. The overwhelming feeling is you want to pull yourself up from the pit of doom and despair, but then comes the added bonus (that wasn’t mentioned in Bullseye was it?) of dealing with said change.
It’s bizarre I know, that even something so loathed and ugly can become the new ‘normal’ and in turn becomes the routine. Routine being a pillar of ASD. So I am faced with this dilemma, not only dealing with trying to get out of depression and the state it puts me in; but also then dealing with the change in circumstances and trying to establish again the new routine, which was the old routine which I’m trying very hard and sometimes even failing to make a good steady routine. Routine being one of the very things that keeps me stable and keeps me in a good mind and able to cope a little better with the world. Forget Countdown; that is a conundrum.
The one little Whisper….
Going on this journey of life, I have often had the one little whisper; whispering away in my head.
There’s hundreds nay thousands of voices telling me “I can’t, you can’t, you never could, Who do you think you’re kidding Mr. Hewitt?’
But lurking there is that one little whisper telling me I can, telling me I was destined to do it, destined to be a success, achieve things. The only hope being that the whisper becomes a holler and an affirmed self belief.
I think this does often happen in life. Particularly if you want to go to a career or a direction that is seen as ‘making it’. People like you can’t do things like that. People like you don’t do things like that. People like you don’t make it in industries like that. People from our background and upbringing don’t make it in places like that.
There are many contributing factors to the hundreds telling you that you can’t and never will. It can often be yourself. I am indeed my own worst critic and always will be. This can become compounded when you receive a negative comment. As, all that does it add to the very already negative feelings you already have about yourself. Now, don’t get me wrong; I don’t really care what people think, feel or say about me. I have my inner circle, they’re the ones I care about. My inner sanctum, makes me sound like the pontiff! Or I’m the human version of St. Paul’s cathedral! But, outside of that inner circle, it doesn’t really bother me, but it just shows again what a messed up process the brain is, particularly mental health really can be.
Depression is obviously the next major obstacle and catalyst to the doubting Thomas rearing it’s ugly, relentless head again. The hydra of emotions. If you cut one head off, three grow in it’s place. Often it’s the pain in life that will lead to an Artist’s great work. Calling myself an Artisté itself can be a very hard thing to say when in this mindset. But, yes, it’s the pain that can often lead to the best works. Whether that be drawing, poetry, prose, music, or whatever other varying from the expression comes in.
This is where the real struggle comes in. As yes, from the pain comes the writing and the work, but doing it whilst in pain is nion impossible. Depression is debilitating. I am almost about to bear my soul here, emotionally. Almost to a point it can be embarrassing. It’s often the reason why we don’t talk as much as we should. Why there have been so many campaigns about opening up and talking. It’s the hardest thing to do for many reasons. One being, that because said situation can be embarrassing and awful, you don’t want people to see that side of you. For fear of that’s how they will remember you. That’s how they will see you, You don’t want people you love to see you like that. Yes those who love you will love you no matter what. Love is unconditional, but it’s the fucked up process that is depression.
Not having a shave, not sometimes even having a wash or shower for weeks on end. Not eating or eating to excess. Not moving from one spot. So much so that at one point, I can recall wetting myself as moving from one room to another was such a monumental effort. Now reading back at that I’m sure many said and would of uttered…….’Eww gross!’ Yes it is, it’s ugly, it’s horrible, it’s debilitating, it’s the seven stages of Hell that Danté described, so yet another reason why we are so not forthcoming at talking about mental health. Who would want to admit poor hygiene? Not being able to move? You already hear the reaction…..you horrible, disgusting git, you lazy idle sod.
It’s so hard to explain that mindset to someone who hasn’t been in it. Everything that happens to you that’s bad is YOUR fault. Even a major disaster is something to do with you on some level. Even the good things that happen, must be a mistake on some level. And, the good things are only happening to tease you as then the bad will follow.
You can even see the bad in the good. A half full glass can be turned into a half empty one where no one else can see it.
You’ve won the jackpot! Yeah, I’ll probably have to pay tax on that. Good news………She has just declared her undying love for you. Well she’ll probably leave me and run away. Oh, why don’t you go out for a walk? Something bad will happen, something will go wrong. Why don’t you eat something? What’s the point in that? Why don’t you listen to some music? What to remind me of times when I was more happy, yeah take the piss.
That’s my point right there. All those are good suggestions and good things but all you can see is the bad. Tunnel vision for all things that are wrong. The negative charge is fully charged and the positive charge needs a battery change.
One of my favourite musicians, I have far far too many to list, I’m very eclectic when it comes to music taste, being Johnny Cash. “I hurt myself today to see if I still feel” Yes, I’ve done that. Done stupid things, contemplated doing even more stupid things, and found myself in hospital after doing even more daring and risky stupid things. Just to purely see if I can still feel anything. To see if the bland, nothingness can be lifted. Literally numb to everything and anything. It almost can across as cold. Oh this has happened (imagine some really bad news or could even be good news! But as mentioned before not that it would be good…glass half empty)
Sometimes not even that. Just a catatonic state and an almost grunt as a response, if there’s even a response at all that is. But that’s it; no emotional reaction just numbness and a blank exposure to it. Another song he did, was “The beast within me”. It’s how I often describe and call it what’s inside me. Whether that’s dealing with my addictive personality or the beast that is my messed up head at times. The beast is never truly slain, he’s always there in his cage; just asleep and all you can hope to do is to try and keep him asleep. But at times he will rear his head, pop up, roar, spit fire and say hello.
This of course with the Autism on top is a ‘double bubble’ probably a better phrase but it eludes me right now. With my autism I often get delayed reaction. What is called transition. Being able to process information and context of what is or has happened. Or even about to happen. I can recall certain people saying to me “Oh I saw that one coming! I knew that was going to happen! I worked it out! I knew he or she was no good!” Oh well thanks for telling me! You could of mentioned something love, might of come in handy just a little! How couldn’t you spot it? You really couldn’t see that?
“NO!! That’s the bloody point”
It’s almost as if there is a timer delay switch. Now the problem with this is, is that there is basically a roulette wheel with an infinite number of possibilities. How long that transition takes is anyone’s guess; it’s in the hands of a deity, or Gods, or some other higher power I can’t recognise. It changes constantly. And, bear in mind my autism makes it very hard (underestimation of the decade) to deal with said change. So if it wasn’t bad enough not knowing the outcome there’s another barrier of change on top. Yeah, because what this saga needed was yet another layer. A trifle of an enigma, wrapped in a riddle, shrouded in misunderstanding! And some people wonder why I like a good drink? I wonder.
There is that voice in my head and I believe everyone’s head. That voice a little whisper telling you, you can achieve, you can do it, you can fulfil whatever it is your setting out to do. Even taking mental health aside for a moment, that whisper can still be drowned out by the deafening cacophony of other voices whatever and wherever they come from. It is just with hope, sheer willpower and the tenacity I can hope that the whisper crescendos to a holler, crying out for all to hear. So loud it could of fought the battle of Jericho.
This is my fight
This is my struggle
This is the reason I often fall
For the one little whisper; trying to make it shout and sing.
I suppose if nothing else this lockdown does make you think a bit more. For good, bad or indifferent. Time + being alone = a lot more thinking. Pausing for thought, evaluating situations, having a look at what’s going on around and in your own life.
The bizarre situation I find myself in, is the opposite to what most people are going through. Okay speaking very broadly here, as everyone is an individual so has their own thoughts, feelings and emotions. But, most cannot wait for the lockdown to end to return to a somewhat ‘normal’ way of life.
Most have almost a bucket list; first thing I’ll do when all this over and we are out at the other end is ‘x’. I can honestly say hand on heart even if the lockdown ended tomorrow (as likely as me doing the vanity cover for the June edition!) I wouldn’t be rushing out to get to the wide open world again. Sure, I will want to see the few friends I have; check in on certain individuals. But, I’m not in any major rush to get back to the social world that everyone misses and craves. This is one of the weird oxymoronic natures of the lockdown. I have talked before about one downside for me is lack of routine and loving routine having an ASD. Yes, that part will be good, but I won’t be in any urgent rush to return to the status quo. To get back to the social interaction rather than social distancing. The unwritten rules that have always baffled me, confused me and eluded me. Call me selfish but for once, everyone else is on an equal footing to myself in terms of on a social level
And, if nothing else it will give a reference point for the future.
In terms of when trying to explain to the ‘powers that be’ or anyone else for that matter. Well do you remember the lockdown? How much you didn’t like it? Well, I didn’t particularly mind it that much. Social distancing? Yeah I tend to do that anyway….lockdown or not!!
There’s an unexpected item in the bagging area….
Okay; first off, I’m in the elite group. Well the powers that be called it ‘vulnerable’ but I heard it the way I wanted too! So, I will not be hearing that dreaded phrase for sometime, but hey every cloud and all that…………………….
There’s an unexpected item in the bagging area…….It’s a phrase that has millions of us just cringing with frustration. In many ways it’s sort of the thing myself or one of my few friends might say to describe everyday life. I am in essence an unexpected item in the bagging area! I’m where I shouldn’t be. Or, correction I am where I should be but the surroundings don’t compute. It’s not the action that’s wrong; it’s not the way it’s being done, it’s a breakdown of how to compute said information. My brain ladies and gentleman, a breakdown of how to compute such said information.
Using this phrase for myself I can understand it; using it in a supermarket situation? It baffles me. Totally and utterly baffles me. Firstly how on earth is it unexpected? You Mr. (or Mrs. or those who are neutral in such matters; see what I did there?) well your computer just told you what the said item is; I saw it on your interface screen. So, it cant be that unexpected surely? I’ve done my jiggle wiggle dance, you’ve done your bleep bleep we should now surely be best of friends? No? Oh okay then.
Anyway, when did I get dragged into all this? It’s your programming that’s not working. Now I’m being dragged into the situation; yeah thanks for that one.
I beg your pardon? Your sending up a warning signal. Oh I’m sorry was the stupidly loud announcement so that everyone in a 10 foot vicinity could hear it not enough? You also need to send out a basilica beacon flashing red of all things to let all and sundry know that I’ve somehow broken some part of our sacred but very much on the rocks relationship?
I’ve got things to do! I’ve got LEGO(tm) figures to build! There’s a sensory room with my name all over it; after the indignity of the sensory minefield of the supermarket and now you want to add to my tournament? It’s like being tortured by all those I admire. Terminator, Stephen Hawking, R2D2, every cyborg and android around. It’s the school playground bully come back for round two! I was good to you remember all through the years and labelled as a geek for such! And, this is how you treat me!
Oh wonderful; now you’ve summoned your human master over. And like a Jedi Knight with one swift action and a couple of taps you obey their every command don’t you? You didn’t do the same for me. Just to add salt to the wound, you show me how easy it is, you like your master, you obey your master, I’m just a stranger coming from the mystical land of afar………the drinks aisle!
The human master who has now been over five times at your command. Who is now thinking I’m either a thief, a complete imbecile or both! Your doing this on purpose aren’t you? Green eyed monster! Only my master can have my undivided attention. Jealousy is a cruel mistress indeed!
Now you badgering me for my one of many so called ‘loyalty cards.’ Loyalty? You didn’t show me any did you! This is all one sided is this. I get whose side you are on! Where was my loyalty ey? Particularly seeing the amount of time I’ve invested in you. I’ve only got six items and I’ve been here a mind numbing 14 minutes. You’ve had well over 2 minutes per item! You didn’t even buy that bottle of single malt for me. Least you could of done considering what we’ve been through together. Okay what I’ve put up with. I’ve compromised. Relationships are suppose to be a two way thing aren’t they?
Now you want payment? Payment? I’ll remember that one. If an item I want isn’t in stock I’ll offer to pay for it anyway just to return the favour to you. We started off such good friends. I was visioning little android babies. Upgrading to the latest firmware at a later date. And, maybe even a spring holiday in one of the smaller stores in a picturesque village. Oh well best laid plans my dear.
Then to top it all off you thank me for my custom and for shopping with you…..are you taking the piss? Thank you for shopping with you? Shopping? It was more a retail hell than a retail therapy thank you very much.
An unexpected item in the bagging area. Well I am often an unexpected item, often in very unexpected areas, and I have to cope with it. So just a note, I applaud your enthusiasm but I’m hoping for a significant improvement in the future.
I never had a true friend
I never had a true friend. I thought I did a couple of times. But it was alas all one sided. When someone was stranded in the middle of town in the dead of night; I’d get a call. When someone was needing a computer fixing or some other technical help, I’d get a call.
I was in effect the Batman of the city. No, not Gotham. But a city none the less. When those who knew me needed or wanting something; I’d get a call. However, I found out to my peril it was not retuned. When I did fall on hard times no one was there to be seen.
When I saw my consultant and got my diagnosis, no one was there. I thought I would ask or say something and someone at least would be my sucker, but no, no one was there. Everything was one sided.
I had basically given up on the idea of ever knowing what a true friend actually was. What having a true friend meant. What it meant for someone who wouldn’t judge. No matter what and would be there through the good, the bad and everything else in between. James was not destined to have a friend. It was not meant to be.
My autism diagnosis was in effect when I look back the best thing to happen to me.
I always knew somehow I didn’t fit in. One of the reasons I didn’t manage to maintain a true friendship in every sense of the word. I was the round peg trying to fit into the square hole. The more I pushed and tried to fit in. It either broke the peg or the very structure it was trying to fit in.
I would go so long until the inevitable snap happened. The proverbial art of ‘putting your foot in it’ ; ‘foot in mouth’ ‘engaging mouth before brain’
All those can be used to describe the inevitable situations I found myself in.
Then something miraculous happened. After my diagnosis I found this little unknown place. Admittidley a lot more known now due to the hard work of those involved; we’ve even had some telly and press exposure! The queue for autographs starts over there!
I found the place called SAS. No, I didn’t do a 22 mile romp and endure a stress test to join the 22nd regiment, no, it was in fact an autism service.
This place gave me a lot and still does. It help me understand who I am. Gave me support. I met staff who genuinely cared about my care and well-being and who have had a profound impact on my life. The downside being the terrible transition period when of the said staff moves onto pastures new.
Above all as well it gave me friendships; and for once friendships that have lasted the test of time as well. Something I never thought would ever happen in my wildest dreams.
I now have true friends. People I can rely on. People I know will be there for me. Both through the good and the bad.
If I ever doubted that before then certain life events just reconfirm the strong bond that exists there.
Waking up after taking an overdose and the first person you see is your best friend. It shows you what they mean to you and how much you mean to them.
Trips away, days out, spending social time as well as time being in service.
Yes, I never truly had a friend in early life but now it has more than made up for it with the true and sincere friendships I now have; which will last a lifetime.
The daily ‘commute’
In these unprecedented times; there is no daily commute to speak of! But, even if life was completely ‘normal’ for want of a better word. Being on the autism spectrum, nothing is ever ‘normal’ as others see it.
Written by myself in the third person about the perspective of being autistic and surviving the said commute in a confusing and often challenging world …………………….
It was just another ‘normal day’. Although those very words of normal and day combined together opened up a midfield in his head. No day was ever normal. Not only for the reason that in reality there is no such thing as ‘normal’. But, furthermore; being on the autism spectrum, normality as the world saw it and his world often did not mix.
One thing could throw him off his day. The light shining in a different way, a sound he didn’t recognise, his morning routine being disturbed. All these things could mean he wouldn’t transition and be able to get on with his day.
For today at least things had started off as normal as they could ever get for him. Morning routine had been observed. Morning brew had been drunk. Morning shower had been had, and his regular dose of morning nicotine had been taken.
The normality for him stopped when he took his weekly commute. He always sat in the quiet carriage if he could. Trying to avoid too much mental stimuline. Trying to avoid that catacomb that was sensory overload. Trying not to be asked a question he didn’t know the answer to, or a situation where his literal interpretation would be his downfall.
It all started with a perception. Now, he may be wrong in this perception but in the autism world, that is as relevant as anything else. He always tried to sit in the same seat, in the same carriage. When this happened he was filled with a sense of calm. Today it had happened, but something else would follow.
The ‘customer host’ as the train company called them was walking down the carriage. Asking everyone in turn if they would like a drink. He was approached and asked ‘Are you first class Sir?’ This sent a torrent of feelings and thoughts running through his head. The previous two weeks he had taken the same journey but with one small difference. His dress. In the previous two weeks he had been dressed very smartly. On one occasion a full three piece whistle; and on the other a smart shirt and waistcoat. He was never asked that question on those occasions. Was he being asked this purely because of his dress? Because he had a t shirt; hoodie and leather jacket on instead? Maybe this was just their way of working. But they hadn’t asked anyone else……so the thoughts started running around his head. Is this the reason why or not?
He responded quickly. Despite the above thought process; the reply was fairly prompt. ‘Yes love I am’ he already had his ticket on the table. This had become habit. A habit of trying to avoid unnecessary small talk if possible.
He got his cup of tea; but his mind was in a whirlwind and he hadn’t even completed his commute; let alone carried on with the day he had planned.
Arrival at the train station was imminent. It had almost become a military drill. He knew he was arriving even before it hailed over the loudspeaker at some deafening volume. He was about to go into the abyss. Everything that he dreaded; and all at once. The noise, the sights, the sounds, the smells, the people, the sheer chaos of the situation. He needed his defence shield. Most people do have one for some situations. But, trying to explain to strangers that one is needed to sometimes merely walk through a public place can take some explanation!
If he’s got his ‘survival kit’ with him then it’s bad enough but vaguely tolerable. Cap or hat on, headphones, something to fidget with for a distraction. Some days however this wasn’t possible for various reasons. He knows what people
will ask him. Why then if it’s that bad would you ever go out without that said survival kit? Well here lies the oxymoron. He often feels oxymoronic natures and situations often define his autism. Contradictions wrapped up in an enigma surrounded by a riddle! If you think this confuses you, in his head it can be one thousand times worse.
Why shouldn’t he try and have everything else that everyone else does? Want to look the way he wants to look? Of course he does and here in lies the problem. A cap or hat may not work with what he’s wearing; so dare you sacrifice a comfort zone in order to wear what you wanted? Yes, he could sit and rake that one point over and over and over in his head. Welcome ladies and gentleman to the autism world! But that is the oxymoronic nature of surviving the social situations he finds himself in.
Certain other factors then come into play. Knowing how many steps it is from the train to the ticket barrier. Knowing how long it should take to walk. Knowing the way to walk that is the quietest route. Singing a song in his head that he knows lasts the right amount of time. Or focusing on one point and aiming and heading towards that.
For today at least he had made it. He was outside. Not that outside lay any blessed relief as that can be a minefield as well in a busy city. But, nonetheless he’d made it. He lit another cigarette, exhaled with a rather large sigh and a slight sense of calm came over him. Yes, he knows what the onlookers would say, Is there not another coping technique you could find? Is there not something else that would work? Alas, he has tried but found this to be the best. Okay, it’s a vice, one of many he has, but its his decision and what some people sometimes forget is, despite having an ASD, he is still an adult!
He walks around in almost a haze for a while. Trying to think of somewhere familiar or somewhere he would feel safe.
He needs somewhere quiet, somewhere with low lighting. Somewhere he can de-sensitise to all the sensory overload he’s just been subject too, and the day isn’t even halfway through! He has his sanctuaries, his comfort, the places he does know. He finally manages after half an hour to get back to some level where he can function. He Is now free to get on with his day. Although he is perplexed and bewildered as to how that day will progress. Even with a plan and a strict timetable, distractions happen and that plan becomes less than useless.
He becomes distracted by a shape that is on the wall of the coffee house. After answering twenty questions on how he would like it. Just a simple coffee would be good. But he’s had to answer the equivalent of questions needed for a mortgage application just to order a coffee! But this shape becomes more and more fascinating to him. So much so, that he sits at a table that is next to it. It turns out to be a wooden carving on the wall. Those around him are now staring at him in wonder, though he is unaware of this. He starts feeling the shape, fascinated by it’s texture and intricate woodworking. It’s certainly done the trick. The situation that was effecting him so much before has passed. He has done it, finally transitioned! Sometimes with some things this can take weeks or even months, but on this occasion it has been a quick process.
Taking language literally. I think my first vivid memory of this was from the very distressing times I had in school. School was not a pleasant experience for me…..for many reasons. But lets not get into that one now!
Well I was one the last people who can remember the free quarter pints of milk (in a glass bottle too!) before the ‘Milk Snatcher’ came along and took it all away!
Well I was forever dropping my milk; spilling it. No use crying over split milk, right? Try telling that to my teacher at the time!
It’s often been remarked that I could trip over my own feet. The odd time I do burst out into dance. Admittidley in some bar or something somewhere, it’s normally after a few and the inhibition has gone. But yeah I can have quite bad body control at times. Weird I know as I can play the organ (careful) so there is some co-ordination there.
Anyway, after many a time spilling my milk my teacher said to me “James will you please just watch your milk!” Well queue me just sat there staring at the bottle. After about 20 mins I heard a holler from the corner….”James….what on earth are you doing?”
“Well, Miss you told me to watch my milk. That’s what I’m doing watching my milk!”
I didn’t understand why I was told off, kept behind, and until I was significantly older STILL didn’t understand what she meant by that.
That is just one example but there it is the literal interpretation of language.
Another everyday one that gets me is when people start to recall a conversation they have either had themselves or someone else had.
“Well she goes….and then he goes……then she goes.”
Pardon? No they said! They didn’t go anywhere! In my head I’m visualising as the person talks they enter from somewhere. Stage left if you would. And there she goes!! All the way from over there! They said, they didn’t go anywhere! Didn’t move an inch!
Or he turned to me and said! What was he sat on a swivel chair and turned around?……He was there and in a flourish turned and said….and with such sazz!! It’s a minefield it really is.
The wee small hours of the morning…….
I am writing this in the early hours of the morning; not far of 2am. Several pints and admittidley shorts later…….here I am.
Call it the beer; maybe it’s truth serum? It gets you thinking. Gets you thinking about the past. About what has been, what could have been, mistakes you’ve made, regrets you’ve got.
I was once told that guilt (tied in with that, regrets) was a wasted emotion. I was told this by a member of staff who worked for the crisis team. In a way that makes sense?! I mean having any guilt or regret about anything never changes things. It never changed anything? So, I suppose in a way……..it is a wasted emotion.
I’m sat here on my own. All of a sudden I’ve got a song in my head…….”On my own; pretending he’s beside me’ Well okay in this case pretending she’s beside me. Something of which if you’d of asked me 8 or even 9 years ago; I’ve of called you barking mad.
I can’t explain sexual desire. It becomes inflamed during a manic phase, but even everyday it eludes me. I’ve been told by my specialist nurse (I’m saying no more than that!) that sexuality is NOT a simple thing. You’re telling me!
I thought I always knew who I was; where I was going; what I was doing. Alas, it’s all been an illusion.
I suppose what I’m trying to say is that it’s in the early hours we do our thinking. And, well, all the alcohol does really is add to that already intuitive thinking nature. It can be dangerous over thinking. It’s a dangerous hobby!
Despite having Autism, here I am wishing there was someone; anyone I could talk too. I’m wide awake, it’s the middle of the night and no one is around. Okay my best mate yeah, always awake! But as always, we never ask for help from those we should………just stare at a wall wondering what to do.
Sometimes I do wish I was Cher………I could turn back time. If I could relive 10 mins of a certain situation. I will probably read back on this particular blog and griminess with embarrassment. The ramblings of a deluded, partly merry man who is doing this as he merely can’t remember the past few months. (that’s what mania does to you)
Oscar Wilde famously said “When in the gutter, some of us are looking up to the stars” I try and maintain that sentiment; it’s not always easy. If only I could keep an optimistic slant. Whether this was good; bad or indifferent to do, it’s been done. And, here we are, it’s been done. Your own thoughts and time on your hands. That’s one cocktail I’ll do without! Let’s just hope no one has got them on buy one get one free!
In this current climate we are all self-isolating. Well some are some are just under ‘staying at home’
It’s a bizarre time, and a new world for everyone. However having autism it presents different situations completely. I speak for myself here……not the preverbal ‘we’. One thing the 12 steps teaches you is never ‘say we when you mean I’ a great life lesson indeed.
There is actually both positive and negatives to all this to someone like myself during this current situation. I will try to explain this best I can.
Firstly the positive. There are at the moment a very certain set of ‘rules’. A set of does and do nots. A specified reason why you should be leaving the house. A specified distance you need to stand away from someone. These are normally the things someone like myself tries so so hard to try and do in this ‘normo’ world in which I live. Observe my distance; why am I going out? Why are you dragging me out unless there is a reason? So purely looking at it from that perspective it’s almost as if the whole world has come round to my way of thinking. Admittidley through a terrible tragedy. The only way I can compare it; is if you’ve ever seen a dear family friend or someone very close to you at a sad situation i.e. a funeral you might say “Well it’s great to see you; just a shame it’s under these circumstances’ that is what I meant by what I said before.
The other thing is, when the ‘rules’ were announced I almost had to laugh. NOT at the situation; that is very very upsetting and tragic, more the way it was phrased.
I’ll explain. If anyone knows anything about Autism they will understand what I mean.
“Avoid crowded places”
“Avoid unnecessary social contact”
“Only go out if you have a valid reason too”
That’s more or less how I live my life! Avoid crowded places? Avoid unnecessary social contact? Oh, so basically just carry on as normal! In a bizarre sort of way it’s almost as if all the struggles I’ve had the world has now come round to my way of thinking! Only, I am fully aware that once this terrible pandemic has been curbed, things will unfortunately go back to the Status Quo.
Now the down side. Well someone like myself thrives on routine. And, if nothing else my routine has been disturbed. Yes it’s great not having all those other distractions, sensory overload; too much going on. Not understanding the social cues people give out, the social interaction. But, through the help of certain organisations and services, I have managed to fill my week with activities and friends (something I didn’t know the concept off until my early 30’s)
So yes, it sounds very oxymoronic. But there is down sides and up sides to this self isolation (minus the health pandemic of course)
I suppose in many ways it’s just like life. It’s just been emphasised more and more given the current climate.
Nothing is clear cut. That is what often causes me so many issues. I love black and white, yes and no. Up and down. The world is though in many ways very grey. So yes there are set ‘rules’ but still a fair bit of grey exists.
I think no one ever summed this up more than Karen Carpenter. It was a song about love but to me, sums up autism so so well.
“I know I ask perfection in a quite imperfect world; and fool enough to think that’s what I’ll find”
None of us know how long this will all go on for. But if nothing else people are finding new things and new projects…….this very blog being one of them!
Now that’s a full circle right there!
When 42 Becomes 24 ……..
So; the first of many. One doesn’t really know where to start on one of these. Not to come across as too conceited or self centred. A lot has happened over the past few weeks. I have another mental health diagnosis on top of my other mental health diagnosis I had. Oh the fun! It’s never an easy thing to write a blog. It’s probably more the knowledge that it’s going to be in the big wide world. Knowing it’s going to be out there. Probably the best thing I’ll do is write something in a word editor then add it here. So, I’m not at that inhibited stage and can just be free. And, here’s hoping it’ll be taken for what it is.
So anyway, not to go on. This is the first of many. More to come, so keep checking back and watch this space!