Seclusion and Restraint

I went through something so horrible last Monday I cannot write about it in any comprehensible manner without winding up in tears and shaking.

I cannot not write about it either because it is a common issue for the community. One which I somehow thought would never again be even on the table for me. I was wrong.

After having a number of weeks which were even more difficult than before I went for help. Getting help at all has been a difficult chore as my status as too atypical for most approaches has meant more time has likely been spent with people writing reasons why I am failed over and over by systems meant to support.

I had been hanging on my a thread so slim, I will not sugar coat it. I feared I would kill myself and with no way of getting help had to take measures to prevent that. As I did at the start of all of this I had to make swimming out to sea impossible and I did.

I do not believe it should ever be so hard for anyone, of any kind to find themselves in that position. To find myself there again having tried so hard to get well was beyond upsetting.

I had been in contact off and on with the crisis team here. I had left countless messages at the clinic I am seen by to update them on how I am doing since not being able to phone during hours where someone might answer the phone is a problem.

I had my friend phone, when she came by the house last Monday. It had been my experience that messages tend to get passed on to my doctor, pretty well, only if people phone about me which makes it even worse.

Still I so badly wanted to survive that I suggested that.

I have to use the past tense there because what followed destroyed that tenacious part of me that has fought and fought through service inadequacies and outright abuse by service providers.

I had no real faith in the system left but I had retained a notion that my life is sacred. I had seen  that rebutted my entire life. As has  my basic humanity and my sharing “fundamental” human characteristics. I wish that was not part of the autistic experience but it has been for me and we can certainly see in the news that there is not much evidence that has changed as the murders of those who are autistic mount and the spin is nearly always such that it is us who are difficult. So difficult that too many times I have wanted to throw up when murder after murder is justified.

I am technically alive but right at this moment that feels like a technicality as I was brutalized in such a manner when already barely hanging on that I feel quite done with this horrible planet and those who prey on the disabled and ill for kicks and because they can.

So I apologize for inflicting what may be horrific haiku on you but only by sticking to any sort of strict structure could the words come out at all with me semi-intact.

That complaints are being filed and words written that they claim will protect me against this ever happening again is no comfort as signs that the words that have been written in the past are read are few and far between.

I was placed in seclusion in a ward that was already locked with the reason being given that the doctor was afraid I would leave. I had a serious injury which was the reason I needed to stay but I was not given the option of having that tended to in any other manner.  My own doctor was consulted and while having sent me for treatment with the understanding I was willing to have it there is no doubt he would have insisted if I was not willing that I was willing would be something he covered. So they called someone else to get the result they wanted.  It’s actually in my chart how unnecessary involuntary treatment is for me. Placed there the last time someone opted for that and caused great stress which I can never afford.

So much has been documented about every aspect of me in the last few years as my doctor tries to prevent one horrid thing after another from happening.

This was so completely unexpected though. In my worst nightmares I feared that part of emergency because the sheer over-capacity numbers and chaos have made it hard in previous times. It was for that reason no decision had been made earlier as I froze at the thought and shook and was stuck between the horror of not being helped and that and as sudden never works for me we went home to the void of no support and mounting anxiety over our inability to eat and so many frustrations happening at every turn.

As I cannot describe the situation where I felt that tenacious little finger grip on the planet slip. The anguish of knowing I would never be human enough to be safe on this planet.  I am in tears just setting it up so I bring you the semi-untraditional haiku version which mourns not just me and my realization but those who have paid the highest price for being too different for a planet that seems to crave cookie cutter people.

Earth is a planet

Filled with people  who crush hope

Shred lives with laughter

 

There is no remorse

Reconciliation impossible

Lives deemed less worthy

 

Life as a human

Has never worked for us

Always alien

 

That we are not monsters

Children and dogs attest to

Yet our lives stomped out

 

 

That is all I can say now.  I relive the horror, the pleading that given my replaced knees and severe arthritis it was all so dangerous. I will pay the price physically for this for a very long time. Emotionally I may not be able to recover.

To those who debate the damage seclusion and restraint does more academically and justify it I would say try it. Try it in a true way. Go into a system where you seem too different to treat humanely versus just entering a room where you know you are having an experience that will end.

That is after all the real problem. While I felt that tenacious anchor I had on the planet die in quite a noticeable way the primal fear that nothing would ever be safer again is perhaps not something that can be simulated.

They had no reason to do it. They rotated someone else in there once they had me trussed up like a sheep in restraints on a stretcher for asking for toothpaste too often.  I lay there and they joked about me. A nurse asked about my hitting my head while I was in there and replied to my honest answer that I was feeding her a story. Why ask?

“You look uncomfortable” (laughter from the security clowns in the background) and so it went.

The chilling part beyond feeling they had killed me which is an ongoing issue (I know I am alive but something fundamental to wanting to be did finally permanently depart.  I have my doubts it will be back) was when deciding who to put into the room next (which is not how it is meant to function) they ruled out someone who had a long history of violence and was not settling either.  While I admit the patient they put in there next was uncooperative this is the reality of people in residential settings. Minor things have major and damaging consequences.

Nothing about me justifies it.  No one is even trying to at this point but that does not mean any major accountability for what may kill me will occur. Or the additional physical trauma.  Heels have been dragged on having that properly assessed even. Although they added more pain meds today seeing that the increased pain does remind me of the incident and thus I am re-traumatized over and over again.

The person who had come with me and knows me and is a police officer who tried to reason with them every step of the way.  He had stayed because he felt the treatment outcome a previous time where he had re-directed a doctor to the part of my chart about communication had been much better than without him.  He had to justify staying as he is much in demand for situations where people might fight help. So my being willing made it a hard case to make but he could point to a January situation where his presence and indeed going to hospital were unnecessary but without him there I would have wound up in that same ward for less reason.

His having been nice about it made it tolerable as otherwise one could seethe the whole 9 hour wait about the stress of having been dragged from your home and lied to by the person who made the decision. The kind of person who can justify lying as protocol as if all people are the same which was the attitude that pretty much doomed support by that group from the beginning.

He did his best. I do not fault him. I had joked earlier when I could hear him making his case and it was not yet clear he was not winning hearts and minds that he was my “knight in bald armor”.

He tried even as step after step of the nightmare enfolded to minimize it but I am glad he left before he could see the full brutality of it all. He is on a commission to make changes. Changes which right now seem like they will come to late for me.

I felt I should post about it though.  There is nothing pretty or useful about it other than my being able to somewhat articulate a horror that has killed and does permanent emotional damage to people too often. I wish I knew if  my being alive is a technicality or not right now but such is the harm done that finally I feel no urgency about resolving my eating issues, or my other medical ones that go untended in the community.   I finally hit the point where saying I don’t care became true. I do care that barbaric methods used in health care environments stop.

Torture is never justified. No one is pretending this was.  They will all keep their jobs though and who knows how many people have had the same happen since. What I know is several doctors will have to treat the physical consequences now and I cannot believe I will ever care if I walk the earth or not.

That may pass but it seems so unlikely as to walk this planet as autistic is to invite brutality in the extreme. From the banal comments that make  you seem less than human to the total brutal treatment by multiple people with both power and control I am not sure why anyone does.

It had become habit to fight for help and health.   I would not be killed as easily as too many people I knew and loved or simply new as people of the tribe of the atypical brain.

Being murdered is of course more permanent.  The anguish when something in you dies is a pain I hope most people are spared.

 

A Long Silence, A Dead Father and Train Wrecks of Words

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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.

BrooksPPhappyfishmedadreads

A Painfully Analogous Blog Description

A few days ago on Emma’s Hope Book Ariane wrote about the realization of how frustrating it must be to communicate something clearly by behaviour and have everyone not realize what it was you wanted.

http://emmashopebook.com/2014/03/04/picture-day-moments/

I thought at the time that the grand frustration of an epic day like picture day for both Emma and her mother on realizing the people at school had not been able to work out what Emma was trying to indicate and had thought her family wouldn’t want a picture was so sadly perfect for every day life as autistic.

The last few years have been horrible on a scale so epic for me that even in a life where little goes right I have started to wonder. At multiple junctures when things could have perhaps made some progress towards decreased stress, some return to functioning levels I had once had one day catastrophically bad decisions were made by those with power over me.

In the post before what apparently was a worrisome silence to some of my followers (Sorry about that) I described the horror of having a medical issue I did know needed attending to but lacking the ability to do that myself.

People who live lives often dependent on how those who are supposed to help them won’t be surprised I don’t think that the first casualty of this was my case manager In a way that seems baffling despite in theory understanding my challenges she felt upset by the week that had proceeded her showing up to see if I was alive. That is having done all the communication I thought I needed with her and needing a period of total rest from even my digital life this combined by my, in theory, understandable inability to simply move into a mindset where she could take me immediately to a clinic when she came by made me impossible.

I understand I am difficult. That most of the things that make me so are quite well known as being part of autistic life doesn’t seem to make me easier. Why is hard for me to totally understand. I proposed immediately that instead she dispatch someone to accompany me the next day but I could almost see the stress storm rolling in.

So of course she quit. At the moment of me biggest need while she has been my case-manger it seemed like the logical thing to do. Protect herself from the horror of having to cope with me one minute longer.

Things had been going downhill for some time. Part of her panic I am sure on the issue of if I was alive or dead was that if I was in fact dead the issue of her failure to reengage with me in the community which if I had been dead would have come up as an issue for sure. I am sure that as an issue versus my actually being dead was a bigger stressor. No one seems to have much hope that I will live anyway.

However bad that was though I admit while this case manager had problems understanding me and while I stressed her out in ways that leave me feeling more guilty than betrayed by the timing of her exist because it is after all always the disabled person’s fault when people can’t understand them sigh…

It sped up my being pushed into the arms of a program that I had resisted for months. My reality is that despite having spent part of an overly long period of time in hospital qualifying for services specific to autism the people who deliver them will employ more resources showing I don’t than anyone can to say I do. If you need intensive services and have the notion they should be appropriate to your needs well that’s one you will have to give up or face the prospect of having your life stripped of all that gives it meaning because ethically a person with as horrible health and as horrible scores on measures of daily living competencies cannot live alone.

This knowledge hasn’t changed and I could apparently be ignored almost completely for months at a time but when things worsen ignore the knowledge they have that I should not be on my own becomes something they will solve either by putting me in a group home that always has vacancies as it is all females. Does it bother them at all that everyone else there is elderly and has been on such strong medication for a lifetime that their ability to do much at all is no longer there and that I have nothing but gender in common at all? I guess not.

So while agreeing with my doctor 100 percent that the only time forward progress had been made was when I had intensive daily support the people who would provide it worried me. People kept dismissing how much it worried me but it turns out I was not worried enough.

The program in question came into being to treat the intersection of mental health and criminal justice. In my area addictions are a mental health issue. One which for some people is about as untreatable as my depression. The mandate of the program had been broadened so they could become the dung heap of last resort without regard to the needs of the people places on it but the number of days you need to take up in other more expensive beds still seems to have made it hard for a law-abiding, non-addicted, autistic person with physical health in a state of collapse to ever qualify.

I am not minimizing in any way those who struggle with addictions to the point of being in a revolving door where whether it will open leaving them under a bush, or in one form of penal bed or the other is about the only random bit. None of them qualify for a shelter bed most of the time because of course if you have used substances very few will take you.

It’s a horrifying life in it’s own right and one where the system also fails. I still don’t think setting it up so they can fail me even worse from the get go with a program that all protocols come from a model of service delivery that doesn’t intersect with my reality at all is a solution.

I had been without a depression for a dozen years. I do not think of myself as depressive on the whole as when I get them they are inevitably for autistic reasons. I often think they are untreatable just because the continuous feedback loop of the stressful ways they go about it makes everything about how I function so much worse that I do indeed feel hopeless but who wouldn’t?

In the years since this started the capacities I have had have sunk and sunk which is predictable. A lifetime of viewing my speech as unreliable I could usually predict all the same when I would have issues. Enter the team I have had to dub the sucktastic support team.

The claim to make decisions in partnership with their clients. I do not know what that claim is based on because my case manager quickly claimed I was the one client they found this impossible with. I thought really. So often do team members excuse themselves because someone needs rounding up from under a bush for a probation appointment that I think it really cannot be the same guy. On a caseload of the chronically unhousable, some of whom if too long goes before the relative stability of one penal system or the other, will meet tragic and grisly ends. I don’t feel that I belong on the program with my house and address, and some work but to be the most difficult on it is certainly over-achievement in the field of being difficult even for me.

Because this team won’t plan and for most of their caseload cannot plan they have an astonishing capacity to render me speechless. While once the kind of triggering events that would leave me without the ability for some time were almost entirely, with a few exceptions, limited to medical types of situations now they happen so regularly.

The same failure to see my behaviour as communication occurs. The same inability to reconcile the capabilities I have with what they see and what people say I need. I cannot say they try hard based on available evidence.

All initial enthusiasm about me as at least a win in the housing column faded. All concessions about how they handle me which they agreed to they revoked. Most unforgivably for me the agreement that any reduction in service would only occur after consulting with me. 20 hours after that was said someone came by to tell me it had been reduced.

The spontaneous fury that rose in me scares me looking back. It happens. At the time I was attached to a medical vac. treating a complication. In the swift flying of my hands to my face that became separated from my leg but the person leaving this news was one of only two people on that team who even listen so after she was gone and I had collapsed in tears and sleep for days to come. Sleep to ensure more horrors did not happen in the hopelessness of this betrayal and knowing the spin that would go on my behaviour.

As one of the few who treat me as human at all in the way people treat humans I felt guilty it was her who had to view this but feeling guilty for something as uncontrollable as that is not useful or even fair to myself. A few weeks into this program my doctor expressed concern about how much I seemed to be blaming myself for things that are not controllable but while on one level I know it a dent has made with the consistent refrain of try harder. Do better. Be something other than who you are in other words.

For people who believe in functioning labels as static and meaning anything as they are used in autism I am too “high functioning” for the sort of epic meltdown that occurred. This is nonsense of course but that is is their view. A view which they will not check against any book or source from myself, or my doctor (both equally suspect as our versions of my reality are too similar) but they will cling to.

The chose early on to have in a two week period 13 different people see me. I found out at the meeting where I was told that the worst was over and that I would be consulted that this was based on a reality that isn’t mine. They felt without the need to check that in a crisis if a stranger had to attend to me it would be worse. In reality in the kind of crisis they would know about they tend to dispatch strangers anyway but as more of an imploder I would be so deep within myself who if they did send anyone. Was there would barely register. Still no need to ask me before embarking on something which no one left here thinking wasn’t harmful to me.

In the logic of service provision that them coming made me worse. That I spoke seldom and often backed right up as levels of stress increased and no support around the very key issues of eating and drinking happened this was not their failure. In my every day stress they did not reach what seems like the more logical conclusion to me that they should indeed space it out a bit. That they should support the basics of life which was a large part of why I needed intensive support.

Of course that would have meant thinking my behaviour or lack of it had meaning. I don’t really understand how people miss this. I was still in elementary school I am pretty sure behaviour as communication comes up and nearly everyone on this team has at least one degree and if not at least a certificate where this should come up.

Sometimes between my own experience and reading that of others I think newly minted “experts” have every useful thing fall straight out of their brains because how do they get from they are making me worse without wondering what role their own behaviour had in this all the way to seeing me less?

I still don’t know. They keep changing their minds about what drove that decision. At first they said I had so many medical appointments that it would make no real difference. They make my appointments though and having communicated multiple times I cannot take more than 3 in a week that too has been ignored of course.

Now they say I too often closed the door on staff and refused to cooperate so it was a waste. Of course they had made the first service reduction decision after a string where they seemed understanding of the horrible stress I was under and no one seemed to care if I responded or not and most fled without even trying to connect. Those who persisted a bit often found eventually I would respond but that would put them further behind of course so why try?

They had also made the second one all the way to three days all of which inevitably have appointments so no other aspect of my life is supported before any of the incidents they found recent problems. My failure to adjust to a sudden change of plan and being too polite to yell and scream I tried to say I was expecting you in half an hour and I cannot quickly get ready and then do groceries before physio.

I plan my day well in advance and faced with a sudden change how to even find my clothes in the time before physio was in doubt but shopping is stressful. Physio no picnic. Combined with a sudden change and it was not going to happen. Losing all words when my trying to explain was met with well they didn’t have time to do it any other way I shut the door and went and curled up on my bed both in fear and frustration. This was not a person I trusted to render events accurately even as they stood.

Twice in the past month I have been called to account for all the ways I suck as a client. They don’t call it that of course. The first time that autism was a bigger part of the diagnostic picture seemed to upset a person who last knew me 20 years ago when support in the community was no only real but it was possible to have more of it than you cold handle. Any downturn in my health then was handled by a swift return to a hospital setting so while the support team he worked on seldom saw me at my very worst my overall issues have not changed.

I would not have said the equally ridiculous that he too had changed in all those years. Yet it is a source of a conviction I could do better if I was more personally responsible. That I could only be this is we first get a long stable period, regain some skills that were based in another environment and don’t starve to death first seems sensible to me but not to them.

When I said on being summoned for a second time to a meeting that was about the managers responsibility to protect his teams from the horrors of dealing with me so if he could find a way to drop me he would. (Bad luck for him as of course many of their clients are difficult in ways the average member of society would refuse to deal with so there is no mechanism for it)

I had said if it was going to be a long list of my failure to be personally responsible for things I either never had been able to do or hadn’t been able to do in a long time I would go so there was an attempt to re-frame it as a business partnership.

I was a bad partner in my own health. Gee? Really? They quickly refused to communicate by email. When if ever I see my caemanager I don’t know. To this day she thinks a surprise you have an appointment today approach is okay but I am a bad partner. As he framed it as a business partnership I had to point out that those tend to be equal. We would have of course had all the various contractual obligations of both parties well hammered out ahead of and in contract form and when they failed to do so I would use the legal mechanism available to seek recompense from the courts.

However stressed I am don’t say something stupid and hope if I can speak I won’t be able to point out that as a quick change in how they wanted to frame the same grievances I won’t be able to swat that down. Of course this does me no favours as this seems “high-functioning”. I can kill his argument re-framing in under 2 minutes but be rendered speechless over and over by sudden changes or stupid decisions. I must be making up part of it.

That had come up. That I had to be acting to some degree because how else do I make sense? Gee I don’t know because there are lots of autistic people just like me and indeed one of the current improvements in the DSM is that notions of capacity versus demand are right in the definition. But yes it certainly makes more sense to think a person with skills so epic at pretending to be screwed up would do it to torture them rather than say go off an earn too much money by putting those skills to work in the entertainment industry.

I was also guilty of using the protections available to me as a client of a program where some actual abuses had occurred. This was causing a paperwork nightmare. So too was that the nurses who see me for wound care have felt they need to leave a long paper trail as they are not primarily responsible for supporting my eating or anything but that I was losing weight at an alarming and visible rate was something they felt they needed to act on and document that action as my discharge from their regular attention was looming.

In the past 6 years I have led countless volunteer teams in an unrelated industry entirely and being known for high standards I would have fired any one of my team members with even the smallest amount of responsibility for being unprofessional enough to whine to their subordinates or anyone else in a way this epic. Sadly I cannot fire this guy. The government pays him a ridiculous amount of money and he wants to spend some of his time blaming me for their failures to wrap their head around me? You bet I will take that up with people above him.

In the reductivist narrative of my life that would reduce the value of it because of what I cost society what about what it costs that nearly everyone who earns part of their income failing to support me appropriately is paid handsomely to do so? Shouldn’t their pay be based on meeting my needs at least to some degree? Shouldn’t as much time at least by spent meeting them as meeting about me and deciding what the catch phrase of the month is about how horrible I am?

When you are a child in the best case scenario you will have a parent who is apologetic at the failures of people to realize you have competencies and however you communicate your needs or fears it is communication.

As an adult there is no such protection. In the health system playing well with others is valued so they almost eerily form visions of me that the bulk of the team can recite word for word. The people who refuse to do so still indicate they need to be a part of the team because they are among the most disposable.

So I can’t speak out with the few who do listen because I don’t suck enough as a human to make their work harder which it is apparently if they speak against the group think about me.

When I was just entering adulthood I had notions of a life nothing like this. I would collect degree after degree and that I did not remember to eat it would not matter. Droves of students hoping to win favour with me would always be around to supply useful things like food and drink whether any of them set themselves apart from the herd or not enough for me to learn their names. I had seen this very thing with professors I knew did not bother with such trivialities as the names of those eager to be of use as one said to me he remembered me and went on to say although he is required to teach two courses and supervise multiple graduate students that was true of less than a handful of people. An echo of how lonely my father had warned me when I was still quite young life would be.

Of course life did not unfold according to a plan that would have seen me live in the seldom labeled as such but fairly sheltered environment of academia.

The sadness of the life not accomplished is a sadness but it is not frustrating in the way the failure for things to improve for autistic people is.

I have multiple physically degenerative issues and the prognosis on one of those seems to be in mid revision to even more grim. There is my autism. If I had never felt any grief or sadness or hopelessness maybe I would not somehow also be considered a mental health issue but as the service providers of easiest access they are hard to escape.

My entire life for months has been lived with the horrible knowledge if they do not improve or try in any way to meet the needs they indicated they understood I had I might die. In my most miserable moment I think the paperwork nightmare explaining how someone referred with that as one of the critical issues in need of intensive support dies on their watch is some sort of revenge but I would prefer to live.

During the meeting of the long list of ways I suck at being a good partner in my health I did eventually flee. Fight or flight kicks in. It’s something in itself worrying as a few times it has kicked in and where I might wind up was potentially not safe.

That day the final time I was ordered to sit down I didn’t. I know they can kill you with their words. The hopelessness of them never believing anything real about the real you while simultaneously refusing to consult my doctors notes on the matter is too much.

The inane complaint I am somehow not trying hard enough when the amount of effort it takes to be with them for a single minute or to have persisted through the worst 27 months of my life how do I respond?

If effort was the solution I would be so danged healthy I could work on my agenda for assuming control of the entire planet… As dictators go I would be awesome truly. When I was in politics while an awesome background person that I was unelectable was a given. Yet one never gives up ones hopes of power and how swiftly I would reverse all the expensive ways we fund abuse and ignorance would be a help.

One of the strange problems that goes with my autism is I can in fact communicate well and in a number of languages. Except when I can’t but somehow the times I cannot or even that a communication disorder is consider a key part of it means no one has to listen to me. Any issue with communication is always mine by definition. The well paid people who currently completely refuse to even try to communicate with me don’t have to. What would be the point? I am impossible.

If it were not that the people who do not find me impossible are all pretty similar as far as having the same values I live by I would start to wonder. The depressing thing is that being honest to the degree I expect and ethical is not the majority position for the people with power over me. Yelling at me to “Speak damn it” and then letting me out in traffic while crying so hard I nearly got mowed down is in group speak assertion not abuse.

That’s my reality. I don’t know for how much longer it will be because if I actually manage to fire this team my posterior will wind up in a place where I can not have the things that give meaning to my life. Equally unsuitable but somewhere along the line my value as a person around here sunk so low that things that matter a lot to me don’t matter at all to those who make decisions.

The difficult thing is they have not been able to strip me of my legal competence although two people have warned me that as soon as my current doctor is transitioned right out that will be quick to remedy and I know they are right. It can be half way removed by telephone and whatever they say about that not being enough that almost any doctor would simply sign off on it being fully removed without much worry about the ethics of it is certain.

I sometimes think beyond the fact I have yet to pull of a nice short blog the whole depressing reality of my life can’t be very appetizing for people.

That little alters in some fundamental ways from the tiny child I was once convinced it was my kindergarten teacher about to be in deep trouble for the scandalous way things were run in what didn’t seem very school like but which I was powerless to communicate and equally as powerless when locked in a battle of wills with a larger adult (unlike my parents she didn’t have the sense to know she should have surrendered as soon as she saw I could walk) . To now. In between there have been times where things proceed in ways that I would want but the underlying fundamental reality of how swift people make the wrong decisions and judge you in all sorts of ways hasn’t changed.

There is no point in screaming because while understandable that would violate the rules of the health authority. They could then totally deny you services until you were a corpse. Well granted I would have to scream specific things but it is a good thing that so seldom have I reached for profanity in my entire life that even now if I yell at all it is more on target of what is true at least until I flee.

I never try to judge life of any kind but the ongoing trauma of having mine judges and devalued combined with the knowledge that any time I fail to behave as expected that will be one more grievance in the long list against me makes me more than sad. I am not even sure I know a word to describe how I feel.

That the every day usually unnoticed by others because they take place away from eyes that might care frustrations of living this way are difficult. I cannot imagine being anything else of course and I do not think because people so horribly fail to meet my needs that that makes autism tragic as meeting them would be simple if a paradigm shift happened where however I was communicating I was valuable and when that communication was shutting a door or fleeing as fast as a person as physically challenged as I am at the moment it would still have to be taken as not me behaving badly but as communication about an intolerable situation. A failure to meet a need.

It’s never picture day when you are an adult but the mindset of those looking at your behaviour doesn’t seem to have changed.

Paralyzing Fear meets Medical Need

416111_3028021694076_399525806_oI have a very autistic, very avoidable problem right now. Well the beginning part was not avoidable but how bad it got could have been I guess.

Last Tuesday I scalded my leg. I am hypo-sensitive and have had operations so what I feel isn’t always there. I had had a number of near misses with boiling water and managed to break my teapot as well so although I diligently checked the first 4 or so times this time I didn’t. I changed my pajamas without much thought and moved on.

The next night as I came in from my dogs last use of the outdoor facilities I found my pajamas were again wet and my leg hurt. That time I checked and what I saw was a fairly large burn had burst. Worse it was on an area where I had had surgery which explained a bit combined with the whole hypo sensitive thing how what looked like a very bad burn could be missed.

Any of that could happen and not point to an issue with how autistic adults are supported here. It’s that 10 days after the burn that it hasn’t been attended to that bothers me.

My case-manager alarmed not to hear from me for a few days before this came to check that I was alive the day after this happened. I mentioned it hoping she or my doctor would think to set things up in a less alarming way because he whole let’s go to the clinic now or hospital doesn’t now and has never worked for me.

When I saw my doctor on Tuesday a lot of it was taken up with my case manager quitting. Or my being pressed into opting out of it. I cannot talk to strangers on the phone. It’s one of those strange places where my ability to lead an adult life breaks down.

I had been aggravating in a number of ways I guess including wanting t see that doctor over another but which choice I should make was never spelled out. I prefer to see the one who kind of helps with the others as I know they don’t all have a solid handle sometimes on even things like how much I understand as the jerkiest of them probably never hear me speak. I am not getting started on how I feel on that topic.

So now with no help at all I have to go out into the world. Even the nicest doctor is going to be a bit upset by this whole taking ten days to do anything. My life is stressful and avoiding things that will blow my brain apart takes time.

It’s bad. I know it was actually quite bad from the start but ten days of neglect didn’t help it. That transitions are hard is a known thing so I can’t wrap my head totally around the fact that the obvious solution of simply arranging a support person to come the next day didn’t happen. I have frequently asked about these support workers. I have had two times in 3 months times when they showed up in my life, Once was for 3 seconds and the other time as transportation. What I need is actual support.

So I sit here scared. I sit here wishing I was not an adult as this is not something I can do alone.

I sit here wondering why when I have so many medical issues and life issues it is actually ethical to decrease support. It doesn’t feel ethical.

I get I am “impossible”. Well I am not actually. That was where I felt frustrated enough to opt out of something I need a bit too fast. I had explained the ground rules for communicating with me too many times it felt like. It should be simple. I mean what I say. If I say I can only manage one doctor a day and no more than three a week (did I mention it’s been a horrible year?) I suppose much like the joke about the man who says I love you and years later tells his wife he would have let her know if it changed, I feel like that’s the rule my appointments should go by.

If I say way too many times that I can’t cope with the bright lights, the noise and the often dehumanizing treatment of me that takes place in our E.R.’s there are solutions. If I could make phone calls I could likely arrange them but nope. I have a specialist for most things including fixing gruesome things so if I were my own case manager I would have contacted him and arranged him to take a look at it in the clinic for that. I am not a good healer so every wound I get is a complicated one and well my life plots against me I think.

None of that happened. Now I have no hope of less stress care. No real hope to be honest of being treated with respect as although this was an accident people will doubt it. People when I do not look at them will joke among themselves as if I am deaf.

Yet I have a life I am attached to. Responsibilities and desires. I am also as my rabbi helpfully reminded me a Jew. Not sure why he reminds me of this so often. The whole life is sacred but my life being a bit of a pain in the posterior to manage is one of the most complicated parts of being one. Hebrew is hard if you have no visual processing skills and dyslexia but clinging to notions that your life is sacred when all around you people are making jokes about your distress is hard.

So obviously I have to act. Fall into a void I know will be filled with horrors. So of I go with my heart hammering. There is no comfort object large enough for this task. Skipping it and just waiting to go to temple is tempting but not correct. I waited until the world was darker but there are more ways to deal with light and noise than the cruelty of people.

I am not afraid of any procedures this will involve. I know they are not pleasant but it is the people at the other end of the rubber glove that terrify me. The random mean things they say. I doubt I will fall apart so badly someone will compare the care of me to the care of an animal as has happened but there is a lot of room from there to compassionate acceptance.

I don’t know for sure I will be able to explain what happened as I know multiple people will want to know that. It seems really dumb even for me except this is my life.

A really concrete example of life as an autistic adult. I sometimes feel like the most inept autistic adult out there when I see what people are dong and saying but I know of course others struggle. Others have little issues that become big because where they intersect with the world is too unbearable.

So I will dress and launch myself out the door into Shabbat. Not one of peace I suspect but Shabbat can surprise me. Please let it surprise me. Please let the people surprise me.

Shabbat Shalom.

On Black And White Thinking and Other Annoyances

When I state my opinions about some things if the audience knows I am autistic I sometimes am rebutted not by their own opinion but that my thoughts are the product of black and white thinking.

This baffles me on a few levels really. While I understand someone out there (well numerous someones) has characterized autistic thinking that way do they think we are incapable of seeing the views in between? Or for the sorts of things people go around having opinions about that some waving around between positions is even a good thing?

Here are some things I am black and white about -

You can’t kill people because they have a “horrific” label like autism

The group I call Voldemort Speaks needs to disband.

The world needs more acts of love and less talking about love

Honesty is the only policy.

Every human not only deserves dignity and respect but society needs to make sure they get it.

Most people are smarter than the experts think.

Speech is not the sum total of all communication.

Being able to speak does not say anything about other competencies.

Well that’s the short list. I could go on of course but I would enter the realm of my own life to a degree that would leave people a bit too baffled.

My main problem when I get dismissed by this method because labeling it black and white is a fast way to end the conversation is that just because someone thinks it is so, and even if it looks that way on any issue I care a lot about it is apparently so hard to make another case that we need to queue the oh poor her she can’t see other opinions.

I wish that were the case. I have had other opinions acted out on me. I have seen them acted out on others. Since they did harm I would think people need to be a little more shades of grey overall. Perhaps it is some terrible neurological affliction that the unlabeled masses have that they sway all over the place over fairly short spans of time. I don’t really know but I do know that being dismissed on things I think a lot about with any reference to my autism is frustrating beyond words.

Just like if there is a communication problem that involves me I am not always the problem. This one comes up a lot. Granted sometimes I cannot communicate by the usual methods. Sometimes I need break from those ways but when I do communicate very clearly about some issues I doubt it is my problem if someone spends 8 days trying to change my mind. Good luck with that would seem a bit flip I guess. But is it so radical a notion that having lived as me for 45 long years now I might just have a better sense of what is possible for me any given day than someone who has the joys of managing me as a case? I think yes but majority opinion says no. That I will never sway any of them to my position does make me wonder who exactly is more firmly entrenched in if not black and white thinking at least normative institutional thinking. I am the one with more labels than seems reasonable so of course I have no clue about what is good for me or what is possible. All health care and service provision seems to operate from this stance even though when I was a service provider I am pretty sure respecting the client took up a good chunk of the handbook and the attitudes questionnaire and screening essay questions.

There really is a right and a wrong for more things than humans tell themselves. Sometimes it can be fun to be a little bit “bad” of course and those sort of behavioural deviations from the straight and narrow as they call it are not a big concern. What concerns me are bigger moral issues.

I have written about lying before. People I think refuse to give me credit for being honest as in theory I would be a terrible liar. Yet I could have learned to tell the kind of social lies people tell if I believed that was a good route to go. I spent years actively resisting social scripts deemed useful and even enlisting converts to the whole living honestly.

At this stage in my life the only way it has backfired if you can call it that is people often seek my opinion who otherwise may not have. Rather tangentially related to my life people suddenly want to know things out of their confidence that I will tell the truth and other people will be nice when being nice won’t be helpful.

I do not consider it a bad thing that my integrity is not eroded by the accumulation of social lies and the slide into more ambitious ones. I don’t think it is a product of my autism as I have been lied to be autistic.

When forming opinions past the information gathering stage, which too many people seem to skip, I do consider the extremes of the issue and work out my stance sometimes over years. If someone then sums up my opinion as not worth entertaining because it is black and white then yes I will question this whole how useful is to socially engage thing.

I belong to a group that has been catastrophized to a degree I didn’t even think possible. People’s notions of autism when I was young were not that accurate but the kind of hate that is directed at the label now should really be considered criminally unacceptable. Many countries have laws against hate speech and yet it continues to go on. It inspires violence against autistics and when the worst case scenarios happen, that is when autistic people are killed society tends to champion the killer.

We could use a lot less grey here I think. Sometimes my autistic peers have a laugh at the whole society seems to have forgotten we are actually human but there is an underlying sadness in our games. Games that the experts also say we are incapable of but hey my opinion on anyone thinking they are an expert on matters pertaining to people other than themselves is not exactly high.

I try to live in a way that does good. Sometimes people are offended by it but I take the long view to that as occasionally in being offended it sparks off a thought process. I know I am not right about everything as that would be very obnoxious and like a good debate but on matters that boil down to the application of ethical values it is hard to see how firmness is a bad thing.

In matters less vital of course I slip and slide. If I applied my mind to making a position on everything I would run out of time for pretty well everything. The dog in my life knows my positions with regard to him that are thought out are I do not own him and he is not by being a dog entitled to less thought about his needs than I am by being human. He does milk these positions a bit much as he seems to think that means he can get away with just about anything but ours is a close relationship so of course there is give and take. I have told him that he should try and support himself but he plays the dog card there. It’s a work in progress.

Opinions on autism change and will always change. What cannot happen is for the masses to forget yes we are still people. We are still entitled to any right or protection normally given to people in our areas and so on. If someone wants to call those opinions black and white go for it. I will still hold them. Even when actions by the society around me make me pretty sure they forgot some of this I will keep underlining those positions.

If you want grey here’s grey. Currently most aspects of my life are pretty catastrophic. There is o denying that. That does not mean that I am though. There is a distinction. It is a source of hurt that some aspects of my life are artificially difficult. That is the means exist to ease some major stressors almost instantly but the powers that be or society at large doesn’t do it.

For 23 months and 1 day my life seems to have plotted how to break down in as many areas as possible. My body is it’s main co-conspirator but it was ever thus. Most people who know even half of how bad or plain weird or almost absurd it gets can’t quite wrap their minds about it but in all of this there are times of joy. Less than I might like but they exist.

I laughed doing my work in the wee hours of the morning. I laughed at a few other things. I also cried because life is not easy but it is a life. A human life. While a colleague did say I could be an AI the other day that wasn’t dehumanizing so much as a product of my distance from my place of work so while a few people have spoken to me no one has met me. We shared a good run of AI related jokes and I went to sleep.

Whatever happens one stress I do not need is the steady clamour of propaganda telling me how awful autism is. Telling me all sorts of lies. I will give them my life is hard but as they are about 18 percent of my current stress if they would just shut-up it would get slightly less so. As they feed too many opinions who knows how much of the rest might go away?

I have seen my blog mentioned in a few random places to support ideas I do not support. That is by granting yes I have a disability and yes my life is hard at times, even very hard somehow everything else I have said about my life doesn’t matter.

I studied psychology. I had to study the DSM for longer than anyone should have to I suspect so my notions of what can be said about any person’s autism and still have them fit diagnostic standards may be a bit rigid but it is a rigid format. I will never be someone who says my autism is only a good thing because if that were the case technically I would not have it. Currently since the issue that started my 23 month cruise with instability is most certainly a byproduct of autism, and some of my more major bodily malfunctions are not aided by it I can’t swing to that extreme.

I guess the only good function of Voldemort Speaks may be that it makes me a moderate. By saying I am autistic but I am human. My life matters to me. I should not have been prevented. I struggle but show me a person who doesn’t. I struggle harder than I need to so please society try harder to remove barriers and problems that don’t need to exist I am moderate in comparison. I know they view all those statements as radical but that is their problem.

It gets gritty in the trenches of being me. They are most certainly trenches right now but it is fun as well. Chanukah just brought me more days in a row of being dragged from my home than seemed fair but also laughter and latkes.

I suspect any day now that an accident I had and didn’t know about for too long and then couldn’t cope with what it takes to get it seen to will require surgery. So will several other things simmering away as I said earlier by body is my life’s main co-conspirator but while definitely lacking the capacity to deal with it today I either will or dealing with it will be thrust upon me.

In the meantime there is my dog, the internet, my work and tomorrow. I suspect all four of them will serve up a spectrum of delight and agony and everything in between collectively. I enjoy the dog, the internet and perversely my work so I guess tomorrow is the main suspect in the lineup for the gritty bits but not a lot of point of subtracting any happiness from today just because eventually a lot of unpleasant things will need to be dealt with.

Since I am being radical what with the liking my work and insisting that my life has value despite the indisputably hard parts would it be too radical to suggest that for the issues that matter most everyone try to be a bit more binary? There is a place at the table for dialogue but not propaganda I think. Attitudes are a potential thief of joy and the world needs more joy.

People often think my own attitude needs adjusting for some reason but it’s about right for the life I currently have. For some reason many people also regard me as a pessimist but on the things that need to change front I think I am pretty optimistic. While there has been no sign that society as a whole will suddenly see me as just part of society as a whole say the bits could improve for that to be normative behaviour.

In my city locals do this thing that people often ask about. When it started I was perplexed too. I had to defend it to several people when I was still thinking okay it is illogical but it seems to increase happiness phase with it. People on exiting the bus say thank you. Everyone does it unless they are distracted. It’s not rational behaviour in a way as of course the bus driver is paid for this exact thing but it makes the bus a better place. Which in a weird circular logic makes the bus driver (or the population at large) worth thanking.

So what if people could change normative behaviours about autism? Stop reflexively supporting Voldemort Speaks because of all that good they supposedly do. Stop believing my life is not valuable. Start doing something as radical as treating all people in ways that recognize their humanity?

I don’t really see how any other position makes sense of course but then again I have a “problem” with black and white thinking,

Well he's black and white some days.

Well he’s black and white some days.

Implosion – Or the Benefits of Being a Mound.

I’ve been imploding lately. It’s quite inconvenient because people don’t see it happen. Once you have your ability to signal that you have is pretty reduced.

I used to have shorter implosions but I also had more people on hand to help when that was my reality. This one has gone on long enough for me to think as a default state it has some advantages. Defaulting to a state of full on retreat from the world having already spent the useless energy on somehow feeling guilty for having failed badly enough to wind up like this is actually working in terms of helping ensure survival oriented tasks get done.

For months a command to hang in there was issued. That’s what people say when they know it’s unrealistic but if they spent too much more energy on how badly you are being failed by the “system” they too would implode or perhaps explode. It was not realistic or reasonable or fair.

It’s a product of a lack of appropriate supports that I could stay in this state for long enough to see the plus side here. For almost two years I have struggled to remember to eat and drink. In my state of minimalistic expectations I have remembered three days in a row.

On Friday I weighed whether I could cope with going to services. Even at my worst I tend to be okay with services so I opted in but from a position of them being a potential bonus rather than something to beat myself up about if I couldn’t go.

There’s all sorts of things I should do this coming week. Anything beyond the work related and basic survival is again going to have to be an opt in. I did horribly badly with the one task I shoulded myself into the past week.

There are health related things that have a high priority for any surplus energy I do have. It’s quite mentally freeing to have had this default approach thrust on me.

I spent so much time worrying about getting to this state. It’s not so bad really. There is fall out for sure because the sequence of events is unclear to most other than myself. I did offer my formal surrender to the health authority but I doubt they recognized it as that.

My life though the past half year has been very analogous to the more futile battles fought in 19th and 20th century history. Historians inflict notion of valour on people who then go off and fight stupidly outnumbered battles to die with honour. I have been to battlefield memorials. That my life feels like one and my own participation in it like a volunteer who blunders onto a field where everyone has died _-

well that is a failure for sure. Not on my own part I think.

This is not the first time in the past few months that notions of hunkering down and blending in with the ground seemed like the only way to live mentally. My brain has been in an unrecognizable state for months. So much energy has gone into trying too hard. I call it brain fry in my own mental short hand.

I love my brain. It has been a truer companion than my body for sure. I feel it should have an apology for the ways I damaged it by trying to darn hard when no amount of effort on my own part was going to do anything other than make my own life worse through that horrible feedback loop where the stress of having to try hard makes me less able and the stress of being less able is a stress that we think should be overcome by effort. So it goes and goes and goes.

Having surrendered or more realistically since no one has acknowledged my surrender more like having thought, if my life was a war that I have already lost is freeing. I have shed all the tears I have in me for this failure. Ever minute I rest now is super helpful for my brain. It feels far less “fried” than it has in almost two years.

When I was young and physically healthy I once during the annual mock war that included real soldiers disguised myself so convincingly as a mound that a unit walked right over me. That may be the best analogy of my life right now. All that hurt like heck but I was such a success at being a mound I could lie there within sight of my objective and having recovered enough from the whole being a mound thing advance on it.

People get so invested in not giving up when sometimes that’s the healthiest thing to do. There was no setting my life up so it was not going to demand more resources than I have. My ability to think was being drained away. In my own hierarchy of what is being lost I sometimes state how I care about that beyond my ability to walk but people can’t measure how your thinking feels. You always have to say what’s wrong with it and these sort of thing that doesn’t seem to have any proper words so they can only be appreciated when it changes qualitatively I think. You suspect things are not optimal and your poor brain seems to feel all sorts of things that technically you know it can’t but you have no words for your reality.

Instead of a default position of full on combat sapping me constantly, giving up on “hanging” in there in any sense as a useful thing has been very energizing. I have fear because there are a lot of unappetizing bits to my life if I am honest, but that fear is processed. It is lying there like the reality of knowing people’s pathing would take them right over me. The being trampled on was less scary as it happened than in the seconds where you know you will.

In the next few weeks a few medical realities will more fully unveil themselves. Decisions will need to be made. Anticipating those decisions and what is to come will sap me as much as trying to be valourous in the face of more than I could cope with.

I am a very responsible person. I suspect more will get done now than in the past month. Maybe not everything that people think I should do, but enough to keep me alive and as an added bonus my brain will be less alarming to it’s host.

If more was desired of me then people should have taken my words about my capacity to carry on as literally as I meant them. There is no point in clamouring that you cannot carry on and wearing yourself out carrying on. Sometimes you just need to make like a mound and lie there. Keep your objective in mind but proceed only when it is safe to do so.

Fuller participation in life as humans live it while desirable seems beyond me as a default setting right now. If I think about that long I feel a bit sad but I spent my tears on my failure to be a passable human already. I will be a mound and from that mound occasionally operate as a human.

Hopefully one day the health authority catches up to notions of how it should support me. In the meantime they know how to find me. I know what needs to happen. For this minute not questioning that that knowledge is indeed in me, and that however minimalist my life looks right now it feels quite a bit healthier than has been the norm for quite awhile

Why I Keep Trying in a World that Would Prefer I Don’t Exist.

A commenter for my flash-blog called it a rant. Hard to read and so on. I am the first to admit that my writing is nearly entirely generated by just starting and carrying on and in that specific case I gave up when WP restored unedited versions over and over again.

I would call this explanation of why I keep at it an uncomfortable truth but it’s not about climate change so someone might object.

The commentator later said it was her own issue for losing attention but I know there are others out there who I wish could hear my ideas but who can’t wade through them. Both in real life where I either talk not enough or at a frantic pace, and here. It was also too late to keep my deepest inner demon from fully surfacing and concluding only saying that demon is a huge part of what drives me would be honest.

I cry when I admit the full truth of what I see as the danger is in the whole making a label into a global crisis thing. When I was young autism was seen as much rarer but also in terms that set us apart from pretty well every human out there. Our fundamental deficit was seen as an inability to love.

That’s pretty bad science really, getting to a notion of an emotional state or lack of it based on observed behaviour but that the bulk of people identified as behaving autistically back then grew rigid at human touch, screamed and so on if the issue were pressed. It was not seen then as perhaps some sensory issue that made all those things so unpleasant but an inability to love period. Now they dress it up as a deficit in empathy which is just as absurd but maybe a less painful notion for a mother to take in.

I’ve written that my mother improved at unconditionally loving me in the years leading up to her death. What I left out was while that improvement was happening her mind was being changed not by anything I said or did, but by cancer eating away at her brain. I have lived with having to wonder how much of what finally did amount to my experiencing unconditional love from her, was a result of cancer eating up previously held notions and inhibitions that had until recently led to behaviours in my mother that made it obvious while she did love me that love was tinged by shame.

It doesn’t actually diminish how wonderful being with my mother was when her mind was more literally changed was, to understand the brain well enough to know cancer munching away was helping all of what should have been there from the start. It’s less painful to tell myself I came to terms with things and certainly since she is now gone from the planet less painful to not admit this core motivating factor fully.

I’ve seen how ineffective words are in changing people’s opinions about autism. I cannot really live with notions that other parents wind up thinking thoughts that are downright wrong about autism and then more people get to grow up knowing pretty well any second they dare to observe too closely, how much their parents are ashamed of them. I can’t live ethically with not pointing out when a huge leap of logic is being made that could be destructive. I can’t because for me the things people knew about autism caused a complete parental surrender and some pretty horrific things which I will not write about here.

So yes I do tend to ramble. It beats truly facing that very fundamental pain that comes from knowing not that I could not love my mother because of my autism but that she could not, the way love is most fully defined love me. That it ironically took the presence of pathology in her own brain for her to finally look at me with the kind of love a few other people do possess for me.

If I am lacking in empathy for having spent the better part of my life fighting for a better handle on what people meant when they say love then I guess I would prefer to lack empathy than to be so sure I knew what either love or empathy looked like across the full spectrum of people that I said such and such a group is deficient in either.

I don’t think I am actually deficient in my capacity in either case and certainly what I have seen the so called “normal” population do while claiming to be good at empathy would make me wonder about how they define it.

Imagine knowing the people you care most about are often embarrassed by you. Listening as they start explaining you, just in case, before you even get a chance to screw up socially. That’s the less painful present the past was so much more horrible.

In the end I think my mother did experience more unconditional love from me than most. I didn’t hold the pain of knowing what it took to get there against her but more the world that shaped her and that’s why I am passionate about the narrative about autism. I am 45 years old. My life is more than half over. I don’t need to spend time writing things that get summed up in a way similar to my being summed up was. I do it because if society as a whole adopts toxic visions that link autism to horrors that are not scientifically supported, there would be little point in walking the planet. I do it though most of all in the hope that no little human ever is written off by their parent before they even got a chance to show them in a way that made sense to them that they did indeed love them.

It’s not news to me the world views me as strange and bizarre. There are worse fates than not fitting into a world that has some pretty weird values though. The largest good I am capable of is making people wonder if they are right about what autism is so I try. If people can’t find my message in a sea of words I am sorry but I have to try.

The world is a horrible place to go about in any sort of an obvious different way as it is but I don’t really care about changing the world as a whole. I just have to hope some parent of a young child does wade through my clumsy words and question. In real life I have been there to make people question notions they otherwise may have believed in destructive ways, but in theory you can change more minds on the internet. It seems largely a theory right now as I don’t think I have seen one change in a measurable way through my writing on my blog.

I say young child not because I am confused about the longitudinal nature of autism but because parental fear and misconception needs to be altered before it can do incredible amounts of damage to both groups. I cannot see as a type as the tears that started when I began this document have been a tad unrelenting. You can come to terms with damage like knowing for most of her life your mother doubted your ability to love but you can’t run a nice scan on your brain the way you can your computer and fix the impact of that.

When groups set out to make me less human for profit, at this point in my lifespan on some level I wish they were correct. It would hurt so much less if I was as completely lacking in common emotional ground. I may show it in different ways but I am very much human. My life is not less valuable and it darn well isn’t something for people to profit off of demeaning.

The uncomfortable truth is I was barely an adult before I had to think that this world could only be made better for the next generation of autistic people. Those of us emerging into adulthood in an era when only the classical looking were being labeled at all were already shell shocked by a lifetime of narrow misses with presumed incompetence making some horrific things possible.

When I see the gains that were made for awhile being erased so that pretty new children are subjected to therapies and views that we keep hoping were relegated to the past, and this erasure isn’t even being fed by science but by unethical fund raising yeah I will rant. I don’t like it when words hard come by are dismissed as one since I know when I have been. I am only sorry my message may get missed in a real rant.

This in case anyone is wondering isn’t rant but my own uncomfortable truth about what it has meant to be autistic. The most uncomfortable truth in my past. The most uncomfortable truth in my present is that people still think these things. I’m not that great at throwing myself into the gap created by different neurology clearly but I do have to try.

I won’t stop as long as there are people anywhere using disability of any kind to justify those people not being allowed to live, or having lived being described in ways more suitable to plagues and natural disasters. I am stubborn that way. My tenacity in the face of what others would take as defeat may be the best gift of my autism.