I have been unable to write here. For much the same reasons as speech breaks down. I feel it more intensely when even writing fails but it does.
My father died in August and I have tried so many times to write about that. Or about him. I have pondered writing about other things and it seemed wrong to line jump any other thing without having written about him.
I had decided to today though. Knowing in life this weird thing happens where I can seem quite interesting and animated when in fact I am stressed and afraid beyond all reason because that is how things work.
Verbal language at a normal pace and level is not going to happen. It seems almost a distant dream as this far longer than usual extended bit of stressor after stressor leaves me wondering if it was.
In real life the times I rattle on like a freight train about topics of interest cause issues. Not the one people talk about in those courses about letting others have their turn. I would not be able to when it is like that anyway.
What happens is people tend to mistake this for an improvement. On Thursday my ride to and from band couldn’t understand what happened in the interval and I was only slightly more worn down by band and thus focused on the ways band does that to me and actually in tears which would be good as it was closer to real but the contrast was not something a person outside me can parse.
Going out as the last thing I had seen was on Gamergate, thus igniting my fuel on why are so many people who say they don’t game weighing in here on what happens in games. Games could fairly be said to be right up there with kids as areas or real expertise and practice. Yet I had not been able to get my opinion be more than discounted.
I found this odd but had lots of practice over the summer in areas I could offer actual links to irrefutable knowledge just turned down. There are cool opinions and for games it is apparently one that lines up with other real world agendas. My experiences and opinions do not line up with what people want to hear so being dismissed is a given.
Still I have all this pent up energy on it as getting heard on Facebook in the legions of non-gamers is impossible. For actual gamers it is almost a non-issue. Beyond the added use detracting from the other one and non-gamers getting all worked up about games never seems to end well.
My autism of course is always altering my presentation to the world. The world forgets that quite often and so will not view my run away train mode of discussion as a bad thing but a good one. I am animated, talking about something new to them and so on. That it is holding all the other more personal stressors at bay even if I have discussed this mode people will forget.
I thought though I could use it maybe. I am passionate about games. How even just playing them specifically helped me with a lot of things and how they have afforded my opportunities I would not have had any other way well games are huge so there was this risk that I do feel that strongly enough I couldn’t stay in the lines of course.
Writing within the lines not being something I have been good at since high-school well it still seemed like a tool I could use to unjam the blog.
At the same time I have been reeling following the difficult way the “system” admitted it had failed me so badly that it suspects it can only fail me worse has of accessing “help”. They had suggested one way to access help and it wasn’t working well.
I cannot phone for it. So this tiny window in the crisis chat where as a band-aid to the whole we conclude you will die if we help you or if we don’t. The cab will take you home now incident of the previous week and oh yeah the cab will take you home. My life would make for horrible television. Still the plan was to use chat to access the crisis team. That was all the plan they had.
A bad one as my remembering that in the designated time is hard and the people in both areas vary . The chat itself became a trigger after waiting for 38 minutes because I was most certainly in crisis and being told it was closed.
Although you can phone the phone bit and get told to call back like a bad joke. I try sometimes even though I know my odds of being able to speak are so close to zero but it is in my nature to try.
Earlier they seemed to understand that. So for a few days they checked in with me and then boom that wasn’t happening. They also seemed to understand that even though making a call to a stranger is close to impossible I don’t get to any good resolution on the phone ever. Or maybe they don’t and those who expressed that they did were flukes. But I don’t. In the end you hang up and nothing has changed.
The time the came out I felt that lethal stirring of hope that suggested if I could hang in some plan would come into being but I wish I could kill off the reflex to hope because it is indeed nearly always an accident that will not be repeated if something works.
Sometimes even on purpose they follow that reason which was why the “Sucktastic Support team” failed so badly. Some perverse reasoning running contrary to my entire lived reality that supporting stress reduction increases ability to do things had them do things the opposite of what I said or my doctor said to levels that were flat out cruel. They owned some of them as conscious decisions.
Failing with them as the system usually puts it although even that had a re-write briefly leaves nothing here so I have lived in a horrible void having to go through things that any human would have a horrible time with on top of every other issue.
I have been starving to death slowly. 18 months ago I had the luxury of finding it funny still that they could wind up bogged down in eating disorder versus disordered eating. Again it is an issue we have had a number of times and the formula for improvement is pretty rote if the system is functioning at all so the objective reality staring them in the face registers.
Right now it doesn’t.
I have to live knowing it may never do so. It would seem an odd and slow and hard way to die but other autistic adults have died pretty much the same way.
It does seem like such a rock bottom competency. One which organisms have such a drive for that if I were the only one to have issues that increase around texture with stress and with remembering to eat on the planet while I would still think the objective reality of extreme weight loss is actionable without having to understand it well…
Losses piled on loss. You get to a horrible point where most of the time if you leave the house you react in ways that are not logical.
That doesn’t seem too terrible except you watch your stress reactions blow other carefully cultivated parts of your life apart. I limped away from band last month, Would say ran but I cannot run. I fell countless times on the way home. I collapsed in tears torn in that weird spot between wanting to be invisible in the too long too dangerous trip home and wanting one of those falls to be seen as an accident and action taken but I made it back to invisible central.
People get really focused on behaviours with autism. What they signify is too often not what they care about. Control and management. The epic distress I would need to be in for this to happen well as an adult it’s all hit an miss anyway. There was still a solution and it was one I was ashamed of because it came down to things going the way I had expected them to. I was ashamed because although I reacted in the moment, out of pure inability to handle the unexpected coupled with passion for the cause well it did amount to them bending to my will.
Years ago I had a similar feeling when after an implosion of too long duration a period of a number of years of extremely autistic friendly behaviour around the holiday season emerged. The implosion not timed at all as they never are and I still at that point in my life thought imploding was so much better as it was discrete. Nearly always I could make it even more so. I could blend in. Keep my distress covert.
These kind of things have picked up pace so I have this weird distress of not expecting to survive but knowing if I do the damage my pretty erratic behaviour has done cannot be undone. It’s true. You can be boring and reliable for 25 years in a group and a string of things like this will stand out.
So the pressure of not having any life left to live in if I get well is this weird other factor. People who are not autistic who write about “melt-downs” don’t seem to consider that within them we may be observing ourselves wishing it were other as well. This competency that I quite frankly wish wasn’t therem to see me and know how it will impact things is in itself a source of stress. You react in the second and the very slight time delay before the weird narration of an event you cannot stop kicks in.
I am very articulate in many languages so while usually a source of embarrassment the literal switch being set in default is seldom more than that. I can unstick it. Like everything else stress impacts it so the horror of taking an invitation to leave the hospital on day 2 following my hysterectomy literally well… It’s gruesome thing if you have a large bore iv. I realized a microsecond too late that this would not end well. Went to ground and found myself contemplating the odd act of calling 911 from inside a hospital as security came rushing in as bleeding is now a violent act of a sort.
Thankfully the shift supervisor had some sense or the whole thing could have got uglier. It ended in a position just as miserable for me really as the level of threat that I actually feel under that prevents anything as desirable as getting into a bed but instead leaves me crying under a shower stool is not pretty. Discussion of what to do about you, much of it violent does not help. In the end a woman came and mopped me up and spoke to me as if I was indeed a frightened child which whole some of my advocate friends would cry horror at that being patronizing it was actually a miracle of sorts that she could see the fear. I am 6 feet tall (186 cm) and have the shoulders of a linebacker. While I may in fact seem my scariest when terrified myself only a few people have the gift of seeing that, Maybe all of two when things have been at that extreme in my entire life in fact.
It did of course get worse again. It could be predicted that having been stressed to that extreme that the act of even staying in a place that had seen such horrors would be too hard. Which you know even as you flee will stress your friends but you cannot reverse time travel and undo any of it.
It is actually the awareness of how it is likely to go in those moments you cannot stop that make them a kind of misery that sometimes keeps you in motion. No action is quite extreme enough to flee the mounting terror. That time it was only getting too woozy that returned me to my home.
Tonight after more than a week of trying to get to any sort of resolution with the impossible as I don’t feel dead yet we hit the word barrier so hard.
They always say it is good you are reaching out when you try to access help. If you are autistic though there are so many points after that that can break down. Oh I hear myself. Or see it. I know if I take issue with things that seem like nit-picking but register as massive right then it is annoying.
This watching yourself annoy or confuse the very world you need to help you adds another level of distress to it all.
I managed to use the crisis chat in the appropriate time. Watch myself autistically hating even the way they say sounds when obviously they cannot hear me but more academically having issues with other bits of the construction and I know it would be best not to object to any of that as my fingers fly in disobedience to this knowledge.
But that’s how we are supposed to connect. Without much thought to my ability to speak even if I answer the phone varies with stress. They have written about it. I suspect the person trying to talk to me today could see what was written but it all depended on being able to speak.
Which I technically can do. I don’t know why there is such black and white thinking on the parts of the people meant to help us about speech. It is not unusual. Even the typical have these issues so it hardly seems a reach at all that in distress a system so dependent on speech and in fact increasingly dependent on it will fail.
So it ends. You had hoped to blog on something a step less removed from your personal Hades. Then you were plunged so hard into it for the same reason blogging sideways about another topic hoping to get into the others one day wouldn’t work.
This as probably not very useful at all to anyone but me, is a worry but I do know I am not unique in seeming to possess a mouth that words could get through. In it all being so uneven what comes out it should not be viewed as reliable even when it seems to be working well. Still a blog should have some greater utility so if you have expressed yourself badly it is hard to make a case for having one.
When words stream out my mouth they should be viewed not with suspicion as not being true because sincerity and honesty holds up but wondering what is backed up behind them. If I were shouting strings of lines from a Disney movie that the words were standing in for something else would ft the narrow conceptions of autism at play here. I saw someone batting down people’s expression of concern on a blog where they supported Voldemort Speaks (for the uninitiated here stick in Autism as that group is to me a greater evil than any character in the Harry Potter universe) . They kept saying their kids was less high functioning or extremely severe for reasons like this.
It is not comprehended well, that there are many people like me. We do not fit a formula but may not be able to express the things that most urgently need expressing. Having ever expressed much of anything the expectation is we can even if a lot has been documented on the exceptions they tend to be when speech is showing signs of failing. It is absent it is slowing. Not you are going on in a way that has had more than one person think you could be a late night talk show host. It is still a communication issue and while there are people who cling to notions of nice clean divisions oh what I would not give really for mine to be like that.
Easy to recognize, hard to ignore I imagine it would be easier if the streams of words that could pour out were not mistaken as interesting or informed or whatever. If the ability to produce them about things that barely matter or matter on an academic level were not confused with the ability to talk about the big things. The things that you fear will kill you.
When the utility of having a label gets batted around the benefit is meant to be appropriate supports. Awareness (shudder) Unfortunately when you get older and have lived the bulk of your life getting by as best you can people seem to forget that all the time. Your label is this thing about you. A quick snapshot one they sometimes want refuted even no matter how long it has been your reality but not something they actually have to factor into anything.
I feel like a make work project where huge amounts of time has gone into describing my issues but no one has to read about them. A make work project that could die of the weird warped way autism is viewed because those of us who live the autistic reality are somehow seldom seen as credible about it.
Some even would have our awareness of the issues we have count against us which is such an higher level way of discounting people there should almost be a medal struck for those who think a lack of self-awareness has to be there. Nope. We can be horrifically aware of things we would choose to do otherwise sadly. Unable to change them. Seeing them, hearing them only serves to do this battle with our brains. You see yourself as logical but in those worst moments you are everything but that. Oh sure there is a specific logic to what will set you down those paths.
I have wondered if an operating manual of me would be possible because there are enough predictable points of where the intersection of myself with the world will fail it should be possible. Still people do not read even short instructions for things that interest them so who would make it to page 47 where it might say that saying nice to meet you in the first five minutes will get a person flushed into an exile they will have to return from. It’s hard to come back from that. I often say nice to meet you years later but I suppose it helps to not be expected to fit social norms but I like to be sure.
Still returning from this flight of fantasy to the more harmless ways communication sucks we have now.
The planet feels like it is has rejected me in every possible way now. The paperwork that excuses this has long since been completed. Would it be so hard when we have so many ways to communicate for people to try to listen for what isn’t being said?
It’s so exhausting.