‘One theory is autistic minds make societies for the majority to live in, as they are the minority. Unable to fit in society themselves, they create the order in the disorderly society. They do this by challenging the social norms and expectations that make no sense, finding the most effective solution’
I will give some insight into what it is like being me, in a way that is hopefully understandable to all in some way or another. I’ve been told I think and talk differently to the ‘norm’? What’s getting highlighted the most is my word choices and tones. (Maybe a speech/communication therapist of sorts could be useful) I know this uniquely individual man who was my go too in crisis before systems and procedures changed, he once said these insightful words to me about my mind.
He described my mind in the sense that it appeared to be ‘on rocket fuel’, what was not getting understood is my mind is always like that, I was just having an extreme amount of difficultly, much harder than ever before job containing and expressing it. (complete malfunction, almost destruction) It also depends how much tolerance and control I’ve learnt, and will continue to do so as time progresses. Other factors that need taken into consideration is whether the knowledge I have gathered is accessible at that moment in time, which will determine how well and able I am to express it, and be around.
Words are something at times I can fail at, in such a defragmenting self-destructive way verbally, but never written which is debateable at times. This is why I have shared parts of my first memoir in amongst this blog for a good cause…. Literature, books, words… awareness versus ignorance. I don’t know if I will ever publish a book or what my next steps are, suppose I will figure it out throughout this journey.
Rebel was the theme when I began writing that memoir through old journals. Yet again it is another word with so much shape, meaning and dimension in a literal sense. Dictionary definition states a Rebel is fighting against their own countries army to try change the political system there…. is that the first thought that springs to your mind when you here the word? I believe for some it will be if looked at in a narrow perspective possibly even, outlaw or outcast, vigilante, trouble maker and rule breaker. Maybe through only one lens that may be black and white, now let’s start adding colour by widening that narrow perspective. (rebel, also means someone who doesn’t fit the norm)
Autism has so many meanings but the biggest challenge and obstacle I face daily is not the label, just getting access to the people who specialise in all these vast and varied labels, that is by no means simple and you best be thick skinned to handle it. I would need to change my entire degree plan to accommodate, neurological science, the brain. What I write is just summarised and in no way am an expert just a patient, an individual, just someone wishing there were some ASD/ADHD female/male specialist who could spare some time, or anyone who can shed some light as the labels may not even be the right fit, but I am not educated enough to make that conclusion or decision.
As far as I am aware autism is a life-long condition altering the way in which the person view’s the world. It affects the way in which the person communicates, relates to other people, and how they make sense of the world around them. It impacts their behaviour, learning and social skills for the rest of their life. I remember reading BPD (borderline personality disorder), didn’t like it but secretly hoped that’s all I had, that was fixable and controllable if willing to put the work in which believe you me I always am, these are answers I’ve been searching decades for (how naïve I once was and still am in many ways). No matter what I do this defect always seems to be there but is it really a defect.
Younger years words described my brain as a curse, a poison, I now question the truth to my once uneducated view. I have a unique outlook on life, I have been told this by many but I am already aware of this, once unwelcomed now embraced with open arms. I wouldn’t trade any of my colours in, I just want to understand them more. Someone I used to know once used an analogy to describe me, she said I was like one of them old tellies, sometimes the colours are to bright or dull and have to be tweaked, then they are just right? my question is just right for who? Bare in mind you had to whack the heck out these old tellies to get it not so wonky!!!
Funny I used to like this analogy when thought picturesque. That was until I really thought about it and came to another realisation that’s just another way to be a wolf in sheep’s clothing, but it is still a prettier and kinder way that I have been described, been much worse. Society has always made sure I know I’m different, not normal etc and rebellions against what is a social norm seems to be the vain of my existence. Sometimes my opinion on what a ‘social norm’ is can simply be summed up to being a puppet on string’s, a copy-cat, think I will pass thank you. My skill is a problem fixer, just need to learn the process and work out how to fix it first.
Before progressing further I just want to highlight I am not diagnosed autistic, just ADHD. Unfortunately in this instance I’m fighting a label, a stigma which is the autistic female, and the waiting list for help must be like Santa’s list for checking who is naughty or nice. I have been on this journey on/off for decades, but more consistently with mental health for 2 and a half years +, now I’m told no one knows or can help for whatever reason until specialist respond, no one has the time.
Have to point out I was in crisis then but lucky I’m a self-directed learner and use every means and resource possible when required. I also want to point out there are differences between male and females regardless, no matter how small or big, so is it not ‘common sense’ to assume they would flag up differently under varied criteria, in some aspects? I haven’t gathered enough information and insight into female autism to add comfortably to this blog but if you follow or keep checking back I will get that blog finished and published one day.
I encourage variation in thinking and openness to gain understanding into the working of peoples brains, but I think we can all be linked to the spectrum in one retrospect. I like to believe that together as a unit we teach one another a lot, and learn from each other, if you truly listen and watch!! Perfect is in the eye of the beholder, if looked at in another way somethings only perfect until one person becomes a critic?? I enjoy watching different aspects of life, seeing how it develops and evolves in a never ending cycle.
I seem to keep facing the same dilemma, why introduce people to mental health, social work or any department that researches, aids or helps with any of your general or not, health and wellbeing, under the current way the system works, its disabling sometimes, unhelpful if not more than a hindrance?? I have encounter some of the most amazing people working for those choosing to help, burning their candles from every, and in some cases, any possible angle, but the are all just individuals working together, so the issue is not necessarily staffing to some extent. ( more complex and way above my expertise)
The rules procedures and protocols don’t work because they contradict each other and work on time scales not upkeeping with the human minds mental state decline (also no funding, staff, or structure, (most shocking thing I seen was a taxi paid to carry my medical records, talk about wastage.) Please remember we are not designed to fit into these boxes we are asked to tick to an exact fit, sometimes you can not force a fit or simply ignore it and hope it goes away, just because it doesn’t fit!!!
We can help in ahhhhhh 3 months 2 days……. Time????????? Or schedule you in 1hr a fortnight and you can tell me how I can help you???? I have difficulty at sterile, informal, or formal, however the person fancies being that day, unstructured and completely irrelevantly pointless communication, but believe me if I had the answer, trust me, I wouldn’t be seeking help from yourself or anyone for that matter no one would be. So I think I may be echoing the voice of many where I say
‘no, I don’t know but it would be good if you could tell me, how you can help me or how together we can come to some solution or theory that may or may not be relevant or useful’…. Be very much appreciated.
Do you remember the computer animated Crazy frog back in 2003, you know the wee annoying thing, big magnified eyes with the goggles on the motorbike, winky hanging out and flapping about with the most annoying noise in the world ringtone? Well I had a meltdown, bipolar episode, manic depressive, break down, or, whatever label suits spring 2016. Not sure what you call it, someone who can’t control mouth hands nothing, and is looking like a lunatic on all the wrong meds seeking isolation, keep that thought in mind.
A very educated woman with eyes that appeared in my line of vision, huge, they were so magnified, hidden under glasses like the crazy frog, highlighting the quirky brain scratching beneath the surface. They were so magnified and shining like a beacon, the brightest eyes I’ve seen to date. The reason I seen her eyes this bright is because my eyes and brain new I had stumbled upon a star, I’d found a very intelligent, in a very dynamic way, brain, that could give insight and knowledge in a way I never knew was possible. An amazing skill for details, there are a few human errors in her writing but happens to us all. I’d of never set eyes on her words if I hadn’t of paid for it, my clinical psychiatrist is free to me but her analysis is not, there is always a cost.
She believes she can no longer help me by visually seeing and giving me a moment of time, my own eyes can register. She could help unravel and detangle my confusion, but I am not her focus, she’s a very important busy lady and I don’t mean that patronisingly. In this first meeting I couldn’t look at her, concentrate or understand a word she was saying, speaking words I’d never heard in that setting, asking questions that made little or no sense to no one bar herself (at the time, I have since learnt a lot).
Obviously, magnified eyes and crazy frogs are just analogy, but it is the best way I can describe the reason her eyes appeared this way, to me, at the time. It’s also the only way, I, can explain why I linked the crazy frog analogy to this woman, to my nana and back to myself. Almost as if she could be the key to unlocking the mystery.
In the middle of Spring 2018 my Grandfather passed 20 days after his birthday, we buried him 2 weeks later, on the Thursday. His granddaughter, a sister from another mother got married 2 days later, on the Saturday, my baby cousin, who never in a thousand years did I imagine, would finally shut up but she found someone that could do it.
When hope feels lost, we become quite desperate and it’s never pretty, but I always find my way home. What I can assure the people I do care for, regardless, when you truly need and want me, I will be there. Even when you think I won’t, or you worry about my capabilities, you’re just underestimating how thick my skin is, or, how big my heart is.
I defy conventional ways of thinking, or someone thinking they have any control on my internal thoughts, yes, you can influence but I have chosen to do every action I have done, and I will continue to choose the ones from now, until my last breath, I take full responsibility. I do not blame my actions on anyone, because, the bottom line is, it was my choice.
People are never truly alone, in some aspects, there is always something there, but you can truly be alone within oneself. Some-times I get wrapped up in my own world, that reality confuses me, but make me aware or self-conscious, you’d be safer having your foot pressed against a tiger’s throat (in an analogical mindset). I have so much self-control, but even I have tested my mind and body in ways I shouldn’t, but I am only human after all. Its mine, and, everyone else’s mistake’s I learn from, it’s how I evolve.
I began looking more in depth into personality trying to untangle the mess I visualise as mind, body, and soul. Tying up all the loose ends in my head with the question who am I? Following the cookie/bread crumb trail as you do, I came across a type of personality test which is a form of psychological typology. I investigated this for personal reasons not for diagnostic purposes. Have to say, my ego got some very much needed attention, A mastermind you say, well now, thank you very much. Clever written words claim that you have more chance meeting a unicorn than you do me, if all words, written or spoken were to be believed, so let’s break it down.
Another perspective is it’s a scientific, strategic mind. I am a master of my own mind, we all are to some extent or another, whether we’ve intentionally or unintentionally blinded or, blinding ourselves to that notion is irrelevant. You have one brain regardless of its condition, make sure you use it to its, full, potential. Your actions will impact humanity, even if it’s only your own, negative or positive.
So, I will reiterate my point, I am a MASTER of my own MIND, we all are to some extent, but my passion is learning and I use anything and everything around me to gain more knowledge. A table leg could teach me a lesson or help solve a puzzling problem depending on the perspective and/or outlook when addressing the issue, is it round or edged, smooth, stable, calm, not rough around the edges!!?
The difference between a mastermind and someone on the spectrum, is that one is just categorising behaviour/personality traits, the other is a neurological brain disorder. Anybody is prone to be a Victim, a product of mental health, I suppose that’s why we have clinical psychiatrists, CPNS, social workers, health assistants, GP’s crisis nurse’s and many more I can’t gain access to ever, or at times. When no one gives me the answer verbally, I will find it if its written, or any other of my senses are able and are accessible to me.
People call me unique, of course I am, but so is being you, I’m just rather quirky. Some people seem to think I mean a negative when I say that something is quirky, and I remember internally thinking I hope not that’s how I describe myself. To have a scientist profile means you’re a natural born leader if required to be. I never take things on face value, all the tests (I’m a fish in some), help, support, words, because, none can guarantee accuracy, but one thing I do know is me, but not always through another individuals eyes, maybe I haven’t learned how to communicate with your personality/brain yet, in a way that is understandable and beneficial to all parties involved. Please just be patient because I may not have learnt just yet, but I can learn or at the very least me empathetic, and then I will be able to if it is within my capabilities.
Which leads me to the question am I Autistic? Am I the disabled one? Do I have the disorder? Am I parts of them all? My scales are out on that. Maybe, but by describing my experience I’ll open that question for debate because people seem to get confused and think I hate labels, that is inaccurate. I’m not a fan of labels that don’t fit, also, labels are just smaller categories for a vast amount of people, things, but labels do help, with regards to aiding in finding the individual understanding sometimes, closure.
In some aspects I can’t seem to find answers that makes sense, maybe I never will, which I think is a problem every human being can relate to, but there is no one size fits all solution, it is an individual journey, unexplainable in a logical, and rational way at times, which contradicts my theory everything has an answer, or does it? I recently lost my grandad and have to say it is my first where ‘love’ is imbedded into my foundation, a huge part of my life, so this pain hurt.
Trying to get my head around it has been hard. I’m a book worm and proud, an appreciation taught by my nana and father in two, completely different ways. I seek solace in words where others may fail, or, not have the ability to use. I began reading a book I never have before on, soul searching…. Revelation and a half, a whole other perspective. What happens after has been a constant vain to me to the point my RE teacher refused to teach, I loved the stories, understood the virtues and values but not enough to believe word for word what is written. I’m naturally, always sceptically looking, for the most accurate answer which led me to a question when do I stop? Can I stop? Should I stop asking?
Stephen Hawkins theory is we return to space, almost making our existence only significant for the period we remain living in our bodies on earth, found this fascinating. Others believe we have souls separate from the entities of our bodies, not necessarily linked to religion. Others choose the words of the bible to be there core foundations, hence, why I wrote my version of my bible, about my foundations. Whatever our beliefs we will never know till our time. My grandad was making lunch, and, went completely unexpected, the week before his Granddaughters wedding. Somehow, we all managed through the stress and the pain. But together, through the negative (Red) and the positive (Blue) we managed a funeral and a Wedding in April 2018.
Just before these events I was beginning to crawl out from under my shell, after having locked myself away from society/external influence for some time. I done this because I couldn’t get a grip on how I influenced others or was influenced myself (entrapment, internal prison), scared to say or do anything in case I unintentionally offended . My neighbour said, she never seen me for a year, I can disappear when I want to does not mean I never go out. But why? Because outside, external influences were negative and I could not cope. Also, I can’t help but want to know your true story, not the mask worn.
Visualise this picture, Jim Carrey as the mask, I want to rip it off, that egotistical, obnoxious, wretched green mask, the eccentric clothing and all, strip it all back, see all your colours the ugly and the pretty, to see the depths of what’s scratching just below the surface, and into the deep. So, when it came to a wedding and a funeral, with lot of people, a room full of family and strangers, I was one of the most able there, as fixing other problems allows me to avoid mine, until a time where I am more comfortable or able to manage, and control the feelings and emotions attached to the event. I can become somewhat, detached and disabled. The perfect clown, mimicking whoever I talk to, like a chameleon, make them comfortable and at ease. I become their puppet, or so it appears.
I once wrote how effective words can be depending on the persons perception at the time of hearing. Another factor needing to be taken into consideration. Sometimes we get so caught up in the detail, that we fail to see the whole bigger or smaller picture. Diamonds in the rough, people with a spark, that has not been dimmed intrigue me, as they have answers I do not, and an inner ability I will continue to try and learn, an inner peace of sorts.
Hope can be found anywhere and in anything depending on your way of thinking. When humanity fails, nature provides and so forth, the cycle is forever on a loop. Hope in people, life, my family, those I care for, those I have managed to grow attachments to, always has me slowly crawling out from the rock in which I will manage to crawl under….. never lose hope because nothing is truly ever hopeless unless you choose for it to be.