I'm not sure how, I begin to tell you, how hard it is, for me, to live in your world. But I'm going to try.
Everyday, it is a struggle, for me. Everyday, it is a struggle to just put enough food and fluid, into my body, to keep it going. I barely move, so you would think, it wouldn't take much food. But trust me, it takes more than I can manage, almost each and every day.
It might be familiar. To hear an aspie say. I just want the world to stop. Just for a day. Just so I can catch my thoughts and process them. Well, the world has kind of stopped for me. But now I want my body to stop.
It's such a struggle. Each and everyday. To put fuel and drink inside this body, to stop the horrific headaches I get because I haven't eaten enough or drank enough. God, I wish it could just switch off this need, just for a while. To give me chance, to really dance. I used to be able to switch off the pain, easily. But now, I can't even do that.
I love food. I really do. I'm a foodie. I love cooking it. I love shopping for the ingredients, preparing it, presenting it and eating it. But I had to learn all that. Eating, is kinda your thing. Not ours. Eating is almost alien to me. I remember, being around the age of 14. And my friend, who I was with at the time. Went into a shop and bought herself a sausage roll.
A sausage roll!!! I remember it clearly. As if it was yesterday.
I was amazed, gobsmacked, confused, fascinated, scared, panicked, embarrassed, humiliated, my head was whirring, my heart beating faster, I couldn't catch the significance of this, the thoughts were coming, thick and fast, my legs got shaky, my breathing laboured, all of this, and more. All of this, all at the same time. What is happening? What's happening to me? Oh god, please let me die. I can't take anymore.
This was the first time that I learned that people actually like food. That not only do they eat food out of choice. But that they actually go out of their way, to spend their own money, to eat this stuff. It was all just too much for me.
My solution, or my reaction, to this new found information, was to move in with this girl. I left home and moved in to live with her and her parents. To learn the crack with this food eating lark. Boy was that a shocker. There was a lot to learn.
In this family, I not only learned to cook and eat more food but I can see now that I also learned to overeat, as well. My friend, was, is, much taller than me and so is her dad. They need more food than me. But I didn't know that, back then. Jeez, I was only just learning that people actually like food and that they do this thing because they actually want to, not because they have to, because they were forced to. I didn't know how much of it you were supposed to eat. I didn't know what hungry was, and I certainly didn't know what 'full' was. I didn't know when you were supposed to do it, how, why or for how long you were supposed to do it for.
This is what life is like. We have to learn everything. It really is like I come from another planet altogether, not just a different world. I used to always want to die. To go back home, where I belonged. I didn't belong here, in this weird and scary world. Christ, I didn't even like it. It was so restrictive. And you had all these rules. Which, quite frankly, were just insane! How the hell do you begin to get a handle on them? There are so many variables. So many little nuances. It's almost all impossible. I don't know what to do!
But I don't want to die. Not anymore. Not because I don't want to die. Which I don't. Not really. But only because I've realised, that it's not, 'your' world. It's not your world.
All my life I've been trying, succeeding, failing, trying, trying harder, failing harder, succeeding some more, failing some more, just give it one more chance, try harder, go to sleep, sleep some more, pretend your asleep, just close your eyes, wake up, do it all again. Until finally. The crescendo. It's building up. I'm getting better and better, better and better, until yes, I make it. I really really make it.
Phew. I made it. I'm one of you.
Or so I thought.
Then I realised. I'm nothing at all.
Sure. I had the job, car, home, I even had a child. I had plenty of that thing you all seem to value so much. That thing called money. I had it all. Or so I thought. But there was one thing I didn't have.
I didn't have me.
Where was I? Who was I? Did I exist? Where did I go? Was I real? Is this just fantasy? Does this world really exist? Do I exist? Do you exist? Who are you? Who am I?
Yeah. That's it. Who am I????
So. For the first 50 years of my life, I have been trying to be like you. Trying to learn your language, your ways, to have your values, likes and dislikes. To learn it all and be like you. Well, I kind of managed that. To some degree. Like the perfect little replica, I was, at times. I even managed to fool myself. At times. But still. Still I wanted to die. Still I didn't want to be here, but I didn't really know why.
And then. I received the news. I'm human. I'm here. I'm real. I'm a person. I really am. I'm autistic. What a joy. What great news. This is terrific. It's fabulous. Let's celebrate.
That celebration though. The fizz finally went flat. It lasted a while though. I enjoyed it. It was good. But now. I'm back to where I always was. But not quite. Because now, I know that it's not 'your' world. It's my world as well. It's 'our' world. It's 'the' world. The only one that we really know. And I've got as much right to be in this world as you. I know that. Because I'm alive. I've got life.
But how do I tell you, that it's not your world, that it's my world too. We don't even speak the same language. You don't believe that. Because you hear us. S p e a k i n g. T h e. S a m e. W o r d s. A s. Y o u. That's because, Y o u. D o n t . U n d e r s t a n d. O u r. L a n g u a g e. S o. W h e n. W e. F a i l. T o. G e t. Y o u. T o. U n d e r s t a n d. U s. W e. U s e. Y o u r. W o r d s. A n d. Y o u. S t i l l. D o n t. U n d e r s t a n d. U s.
When we try to talk to you. Usually after you have pestered us. You don't hear us. You can't understand us. You say we're having a melt down. WTF. We're talking to you. WE'RE TALKING TO YOU. We're not throwing chairs or stools, or sometimes people. We're not banging our heads against the wall. Why would we do that? Who would do that? We're not doing that. That's just what you think we're doing. And you think that, because you don't understand us. You don't understand us because you don't speak our language. Yet, you expect us, to speak yours.
Well, I've learned your language. And you can keep it. I hate it. I hate your language. I hate your words. With all their rhythms and sounds. Their cuteness and their extravagance. Their tones, and different volumes. It's all noise, no matter how quite it is. It's all noise and I hate it. I don't ever want to speak it again. Your words. Put me in a prison. Your jailers didn't. Did you think that when I was behind the walls, in what you call jail, that I was in prison. Well no. I wasn't. But your words managed to do that. They put me in prison. But then again, so did this body. But none of that is true.
This body gave me life on Earth. I've just got to figure out now, how I live in it.
Hey there BlueRay. Hang on in there. Ups and downs; good and bad lightbulb moments; euphoria and desolation all seem to be part of the adjustment to our new but now familiar world. I have been struggling for a while, hence not being on here much, I kept going trying to do what I thought I should. I supported my dad and joined in the family Christmas by choice knowing that the knock on effect was iminent. Everyone went their separate ways and so my body just went splat. Exhaustion enveloped me big time and a virus and had a whole week not having to listen to or talk to anyone with a couple of exceptions. Classic burnout and shutdown. I’m not quite ready to come out of my burrow yet but appointments next week will do that. It was lovely to hear your description of Whitby at New Year a place I’m very familiar with too and so sorry you have come down with a bump. Just take one day at a time and I expect things will even out again so that you can feel ok about yourself again and still enjoy the sparkles. Sometimes I read things on here where I am the complete opposite; I struggle to talk to and form and particularly maintain friendships with people but particularly with men; I’m not into science fiction ( galactic etc) but ok with dragons and hobbits; I have a love hate thing with food because it’s my drug not smoking or alcohol it’s my go to when wounded; I’ve had so many jobs professional and manual, got a string of exam results and yet here I am after all the effort not in a position of my choice but unable to explain it or get my loved ones to understand that I tried so very hard and didn’t shirk and envy them their jobs and families. And here I am.. still one step or day at a time willing that Life will improve but knowing only I can make the changes and I’m too exhausted. I don’t know if I’m writing this for you Blueray or for me but on this grey dreary January morning I just wanted you to know that you are not alone
Thanks Misfit, it was lovely reading that and I appreciate your support. And do you know what, since finding my way here, to this site, because of you guys, I no longer feel alone and when I am alone, I'm mostly, very happy and even when I'm not, I am, because to me, all emotions are good, especially since I can now work some of them out ;)
My curent goal is to get into a regular daily eating routine, many things interfere with this, my avoidance of just about anything, OCD, fear of eating or drinking, all sorts of things, but I'm getting there. Then I'll move on to exercise and so on. I do very little now to fit in with anyone else, so that's a bonus.
As you said, it's ups and downs, good and bad lightbulb moments, euphoria and desolation, it's all there, and sometimes all in the space of one day! Lol!
Like you said, we are the ones that have to make the changes and I'm both resting and preparing myself, building myself up, for the changes I'm now making in my life.
It sure is good to finally learn that I'm not alone. That really does man the world to me.
Hi BluRay want you to know this is a bump, it is not the end ,you showed me we are not the same as them, we see all, our way, different, but we can see our way and there way, they cannot see ours,
We can ride this out, euphoria at finding oneself, reasoning it and accepting it, at last! A reason we exhist,
Be gentle with yourself, keep talking if you can,if you have energy to,
You have been so busy trying to and actually helping so many who are desperate on here, in my own way I have tried so hard to help. There comes a point we just can’t cope any longer, we see the pain.the desperation.
Injustice, the ignorance,it overwhelms us, we need to step back and give ourselves time, quite time to reflect, we cannot sort everything out. We want to,but it is just to much.
Keep on caring, just give yourself time, focus on yourself. You are amazing, I don’t accept I am,but you gave me belief I am worthy of being myself,
We cannot put everything right no matter how much it hurts us inside,we just can’t!
thinking of you, wanting to hold you close and and just say, you need time,
You are amazing lonewarrior, you really are. We don’t have to change anything or put anything right, everything is already perfect just as it is. I come on here and express myself, it helps me get a better understanding of myself and let out my emotions instead of internalising them.
I’m good. This is a process and with all of your good help and support, kindness and understanding, I’m coming through it and I will come through it at my own pace. I refuse to be bullied by anyone, into getting a job or any other lame thing they want to throw at me. I’ll come through this at my own pace. Not only am I processing the last 50 years of my life. But I’m also giving myself one hell of a good rest.
That way, by the time I’m ready to move forward, I’ll be moving forward in peace from a solid foundation.
People can’t understand us unless we tell them, and most of us, by the very nature of the ‘condition’ are unable to tell people what it’s like for us. It’s extremely complex and difficult to describe.
I am slowly learning to be gentle with myself and to honour myself and keep the mask off and take baby steps. I’m being forced to take baby steps due to the exhaustion and I couldn’t be more grateful. Something had to slow me down. I couldn’t keep running forever. I feel I’ve found my tribe here, my family and friends and that’s all the support and encouragement I need. And the support worker is great.
()()() ( that’s hugs)