Before it all begins,
I wrote the main body of this post a while ago, engaging a frustration I was being strangled by at the time. It is a long one and is intense. Within it are some thoughts that I wanted to string out in a more coherent fashion today, namely any threads on the predisposition of society towards repressing arbitrary negatives.
I considered taking the post apart to get to the bits that worked within the idea rolling around in my head but ultimately decided against it, I get attached to a flow as it has been and find it hard to go back and doctor it. I also wanted to say that there is an end goal to it, a general guiding principle that runs through, a splash to the water when it falls, the intensity is vehicle for a thought process.
And so I am writing this preface.
Every part of this post is still very relevant to my life, but to fit my own ordering, bridging the nodes of the nebula, I put it now as a train of indignation against this fixation upon shutting down the mind into arbitrary factors that suffocate the need to sometimes just feel absolutely bloody awful.
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Asking for help with Autistic issues often feels like screaming into a room of people without eyes or ears to hear you. Or trying to explain the nuances of a word that cannot be directly translated into another language to someone who is just repeating that word back at you over and over and over.
I am struggling at the moment with the lack of understanding.
The lack of understanding about what autism is or can be, how it is a different part of each autistic person, how it effects different things for each autistic person, and how it is something that we are, not something that we have.
It is also the lack of understanding that I have about it.
I don’t always know what parts of me are my mental health problems and what are my autistic traits, where one ends and the other begins, and if that is even possible to define.
One thing I really noticed when I got my diagnosis is how much misinformation there is out there, how many prejudices there are, and how many systematic constructs exist that actively stymie the growth of knowledge in the area.
I noticed many of these things because they were things I had believed, had heard and had experienced without really thinking much of it.
The current climate is one of fear and uncertainty. Everyone is on edge in some way. Things cannot be planned. Routines are decimated. I talk to friends with mental health problems and I end up feeling guilty.
My life is one of isolation and boredom, kept wrapped in those bubbles through a suffocating binding of catch 22 situations and getting stuck in the cracks of life. So now isolation and boredom are widespread I feel I should be fine.
It’s not that much of a change to my normal life, is it?
Why then am I not just ticking along perfectly alright, even able to help others with ideas of what to do and how to keep going.
The key thing here is that it is not the same for me. I am autistic and it is exceedingly difficult for me to have even the slightest change to my routine. Even just the loose routine I have so that I don’t end up trapping myself in a spiral if I can’t do something at the given time.
But I see others managing their days, being productive, doing various forms of exercise, and all these things that we are told are things you need to be doing to be succeeding at life.
So I feel guilty.
I am aware of one of the biggest problems that digs my holes for me, I can’t accept the extent of my own problems.
I tell people how I am but feel awful if I go into too much depth, fearing that I will hurt them in some way or scare them away or just get a ‘oh I’m sorry, that must be really hard’ and a pitying look. Or someone will misconstrue something I’ve said and I’ll end up, for example, with no one ever hugging me or touching me at all.
One of the biggest fears is that people won’t believe me.
They will think I’m lying.
How could all these things be happening?
You do so much whenever I see you!
But I’ve seen you do that before?
Why didn’t you tell me?
I am a 26 year old who has sporadic loss of movement and speech that varies in intensity.
I hear screaming, singing and speaking when no one else can.
I see things that no one else sees, things on fire, faces melting, and solitary figures that range from shimmering shadows to companions of horrifying but comforting presence and appearance.
I find focussing on one thing by myself very difficult unless it is the ‘right’ thing to do at that time, governed by some inner impulse, and then I am extremely focussed on it and, where applicable, productive in it for an intense period of time.
I get migraines from too much light. I throw up from certain textures going in my mouth.
I am in pain when talking on the phone but I cannot find the words and obsess over them when messaging.
People I don’t know touching me without warning makes me want to scream, and often the same with people I do know.
I get extremely warm but also very cold.
I feel small pains as the most intense agony.
I find socialising very taxing but get exceedingly lonely.
I spent 25 years being told by the world that I was too sensitive, fussy, stroppy, not trying, unwilling to cooperate, selfish and arrogant.
I was diagnosed as autistic at 25, freed from some self doubts but left with a soul consuming grief for all I had suffered because I did not tick a box guarded by stereotyping, misinformation and wilful ignorance.
I was lost in a half life for years because my problems were addressed with medication and nothing else.
I have large sections of my past that are veiled as if behind a thick fog, the memories are there but inaccessible when reached for. Sometimes they appear without warning, brought out by any random thing, and I am left broken or experiencing the memory again, laid over the top of the present day, it’s not always the bad ones that break me and it’s not always the good ones that I relive.
I sometimes lose myself to an outer feeling, an other not entirely separate but overwhelming and invasive, whereupon I have to fight for my body, my control is subsumed by a battle that feels as though it rips through my mind and self, and I am only dimly aware of this reality until I resurface. If I lose that fight, or it approaches so quickly that I don’t have time to ready myself, then I am not there. My body explodes into words that are not words, reactions that are not mine, actions that I am only dimly aware of, as a screaming pinprick in the corner of my head. When I slam back into place, re-emerging as the controlling party, I scream.
I cannot accept the extent of my own problems because I do not have a simple way away from them.
I’m doing fucking well just being alive today.
I will accept them in time, slowly and in my own way because I’m just going to be learning to live with most of them.
But for now, I’m starting by being more open about it all.
Ps/note: After writing this I felt much calmer than I had all day. I did have a resurgence of recollections saying ‘you shouldn’t be dwelling on it’ but I realised that I have listened to that to the extent that I never allow myself to even begin accepting the problems.
I am aware that listing things I struggle with could be depressing to read and be viewed as vain or self indulgent. It probably is very self indulgent. But I have listed them as facts. Any embellishments of eloquence that came in functioned to allow me to communicate things that I do not understand and do not have words for, to translate things that don’t exist in sentences and written form in my mind so that I can share them. Assigning arbitrary concepts of good and bad, depressing and uplifting, can serve to tie down exploration and explanation, so any time that I do that, it is to avoid my being distracted onto a digression of thought, something that I am very much prone to doing!
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I wanted to add in at the end here, if anyone makes it this far but also for my need to be clear, everything inside the dashes is from a few months ago, so some things such as my age are now slightly wrong and there have been developments in some areas. But as I said at the top, I get attached. 🙂
I would be thrilled to hear from anyone who this has struck a chord with or just any thoughts on the matter.
We often shout into the void in the hope that we might hear an echo or for a moment, feel another reflection.