Tag Archives: communication

Scripts

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I am not that self-driving in my blog. Searching for things to write about 7 months ago this was on the wish list  of a few people and I feel sure I am about to possibly miss the mark or not depending on where they are on their journey with the whole every human has different ways of operating , some of them not that functional but  the numbers advantage of what is officially seen as pathological is on the NT side.

I did  say that most of the things that get labelled all sorts of things but all of them grim labels about how autistics express themselves when it cannot be understood are in fact something one can understand for the most part.  They just don’t fit expectations.

Some are harder to work out than others but  repetition is a real skill set of the autistic. I tell my  dog the same not that funny,  not quite a joke, based on the Talmud every walk he has on  Shabbat   A strength of dogs of course is knowing this is the prelude to a walk and not being able to express that there are down right funny bits and sticking to the content from work prohibited on Shabbat (including taming a wild beast … For dogs this would be if they strain on the leash.  From the time I was 9 and the era of dogs taking me for a drag ended I have never had this issue.  My dogs would all be in the most likely to hide in my shadow hall of fame…. )

If I were say yelling that at a dog and concerned citizens came to help  well it is hard to know  if being Jewish would help much.  It might give a person an edge on knowing the phrase  and so it goes.

For the more usual kind  an autistic comes up with a way of expressing the same thing and sticks to it. It is not how neurologically typical children express it and thus it is harder to make sense of.  The desire is thankfully not missing in the people who asked me about this as one could of course just view it as content without meaning and go with the kinds of therapies that might indeed make a person make words that sound normal but do kill self-expression as that makes them seem unlike their peers.  I would hope so.

Thinking the goals of therapies belonging mainly to a specific set through  I don’t know if people even sense the implications. The “non-distinugishable from peers ” goal stands for so much and if someone just threw that out there in random shared space again and again we would suspect they are broken too.

It actually seems like less of an attempt to communicate than most poorly understood (other than for the joke with my dog by him ) things an autistic person says.

It is more of a trigger. Seeming like other children seems desirable at first glance and yet a first is all some ever give it.

The Prime Minister I wrote the inevitable best Prime Minister of Canada had this to say  in 1971 before the Ukrainian-Canadian Congress on the topic of average. While I suspect he did not suspect it would work for autism it does.  I will spare you over half of it to focus on children as it was parents who filed the request so to speak.  He said : What could be more absurd than the concept of an “all-Canadian” boy or girl? A society which emphasizes uniformity is one which creates intolerance and hate. A society which eulogizes the average citizen is one which breeds mediocrity. What the world
should be seeking, and what in Canada we must continue to cherish, are not concepts of
uniformity but human values: compassion, love, and understanding.  ” Pierre Elliott Trudeau- not to be confused one bit with our current Prime Minister… But the Greek Tragedy torments I sometimes play out for Justin …

Another example sort of as by  being very interested to an exponent a lot of what I say on a political theme is 875 levels  harder to understand than this so I could seem to have an impenetrable script going on when I am sure being able to read 150 year worth of Canadian political history with a surprisingly long period of in between eras history … in less than my remaining life span but as physics was my first big love and is hopelessly tangled with religion for reasons specific to me there is bad news…

If one viewed me as unlikely to ever have said anything of communicative value the words of pathology would drip out and as I sometimes keep productive speech in mid “help my Purkinje cells have an empirically validated issue and thus the background noise of my brain is Activate!  Alert! So one more thing or two depending on the day that one is not used to coping with and those topics I love enough to retreat into them on days where I am more self-regulating and the world has no demands and thus no public displays of “Autistics Gone Wild”  happen. This likely would be the Spring Break Edition as when still at an age when those happened they are odd breaks in routine.  A weekend is doable as weekends have their own things.   But this theft of time meant to be held at school and cycled through with bells ( I am old. I think perhaps they do not use them all of the time now and in fact they didn’t at the third Elementary school I went to.  But did again in higher grades

Back to how it works as an analogy.  The “indistinguishable from peers” is a phrase which parents, educators and funders responds to in a frighteningly Pavlovian way just as once notebooks were picked up in mid bell without thought and the mental calculations on if you were going to your locker or not tended to be done freeing you to ambulate without thought to the next destination.   So free that several random things could crop up on say the commute from the third floor to the annex (my locker was  on the lowest level so my brain would have deemed this a no but it was also often filled with garbage by other students so it sent its own don’t choose a pass by the locker signal to my brain .)

Autistic children tend to come equipped with parents not all of whom are autistic and thus a fear that they may never actually crack those codes and help their children who do at times seem distressed enough to create a state when the NT parent responds to this phrase and those that go with it in a way that then  is automatic.

The thing is other than in one case the wiring is different including actual brain cells that are marvels in the autistic the words that people know what they mean are similar. The need for them seems less clear as if say you are me and under stress you might not be able to talk, might talk very slowly, might have a few things you say, or have a lot to say on multiple topics some of which a degree or three would be helpful to even conclude the sounds are not random.    I don’t get to choose where I fall on those lines. I didn’t  even choose the things I would be interested enough to hit levels like these. At one point in my life something related to them hit my then much younger brain and as many of them were not of passing interest all the time and energy plus reading way faster than most ( I was afraid as a child I would run out of books. Then on seeing the books children my age were allowed to take out after pondering if this was a  plot to keep children stupid I wondered about things worth reading. Happily the autonomy to go to the library on my own – freeing me from the tyranny of the school’s rules was granted as weekly with my father would not cut it. )

Pierre Elliot had a point which does apply.  Obviously substitute a word for Canada but this very much applies to why as a goal fitting in with peers is a bad one.  Even if you ignore the whole we will never seem like our peers.  Efforts to stamp out the ways we do not leads to even stranger seeming things as it is much like taking the hand from a puppet.

If I scream Mulroney when I mean danger and Joe Clark when I mean a super hero is needed in the short-term as my kind of heroes tend to get that if they get to the main stage at all.   Well  I would never have gotten to do the things I did as an adult but you,, if you were Canadian and somehow unbiased as far as how things go might guess or might not.

One was so deeply honest that I do hate what process we view as fair does to the honest and ethical few who cross our screens as potentials for high office.   The other …  well more than the opposite.

The reason in adults politics is sometimes used as insight into personality is of course I identify with those who are honest and ethical and content of the need is there to battle it out well when the main field is lost however we can.  I use my dog to create awareness and as a non-shaming opener into if people are registered to vote.  Someone who has been Prime Minister even for 9 months and leader of a now dead party twice (you do not always win the grand battle in an obvious way or perhaps at all but the fight for a nation must go on) spoke to groups of concerned citizens.

I have my best Prime Minister who is not my political super-hero as 9 months was not enough and I have a best Prime Minister who never was (Stefan Dion).. I am clearly non-partisan as my hope which I knew would not win the day ( I have gotten fairly good at quantifying data bits in the sleep cycle of my brain.  Although this ability to know the data points and work with them is the  sphere of a policy wonk who will suspect there is no other kind as they have to know all other  forms of wonk but a data wonk would need a lot  of funding  and while policy does not change to fit new data odds are if you have ever written policy and are not  a big deal yet you will find yourself doing everything else anyway. You know for sure there are wonks to speak to best placement of announcements but you will know where to display them.  You will know what percentage of people respond to alliteration (enough that you may as well as it is less of a wild card than puns) .

These children and adults who say things that don’t seem  like they parse are not unlike others as fields have their own language which is called jargon until there is leakage.

I once did have the experience of being in Toronto (the place they send people to for conventions only I gather some people choose to live there which would make conventions a short commute ) for one issue and wandering into the reception area for a provincial political thing. Okay as politics is my thing that some Federal people were there was clear and a few even recognized me, not exactly greeter wonks if they exist.

An additional confusion even though I was sure it was the wrong province is they make convention type hotels so identical. I have sometimes suspected even down to the flooring and carpets.  Now if I had wandered into something I am not remotely interested in the signs would have been confusing. The overall tempo chaos – this is the case for the mythical normal person too.  Conventions seem like punishment pretty fast I suspect.  I mean when you think okay see parts of Canada I would not otherwise like cadets and it turns out to be mostly Toronto except provincially that will be Vancouver and if I go that close I do not want to be pondering the carpet on hour 7 of a vision statement nightmare.

Now as I mostly understand myself when I hit wondering if there is some odd thing going on with  carpeting I need an out and being fluent in  Re-visioning a Vision Statement  and how non-profits work.  I could raise a point of information that I felt sure was missing (it was) and make a motion that passed. I wanted out of a return trip the next weekend and I thought that enough voting people or perhaps any based on those looking at the clock instead of the carpet knew that you can just approve the pre-existing one.  Now this was not evil as the vision statement and it’s close relative the mission statement remained good fits and might have explained the zero progress on even the first.   Was it speedy and unanimous – of course.  No one likes a free trip and hotel room quite enough to keep doing the same pointless thing especially if they have no way out.

In children they often are expressing themselves and in my experience they may even have an everyday language way of doing it.  If though  someone or multiple people have been introduced to throw doubt or label what they are doing as

A child would say my name and watch often.  She had known given the as many functions as the budget allows watch I had that we shared this interest. Oddly some people owning a watch like mine change to different ones when not engaged in specific activities but then you have to put up with different weights and so on.

She lived in a place where the province only funded ABA and someone had out of  a fairly equally serving hope gone off to do the very short course in it. She had been lulled by the key phrases I think away from the instinct to look deeper.

The only true part may be the first A as it is applied but analysis does not go on. There is a goal and there are ways to reach it.  Compared to non-name brand versions the script is what substitutes for analysis .

So quick to label her repeated approach and statement as both perseverating and echolalia… Well  tenacity is an admirable attribute and echolalia is a fairly useless concept . I  seem to have it when distressed but that would make it meaningful and thus not echolalia.

Now I did point out  eventually that it should be viewed as repeated attempts to socially engage over a shared interest. That would be a good thing and that is the problem with all sorts of scripts and the words in them. They can conceal all that is meaningful or our belief that the words should match what we expect can get in the way of seeing them  as not a symptom but communication..

Communication is two-way and I am not advocating for it not mattering that if only family members eventually understand what the extreme scripts mean, that there might not be an issue that work could go towards.

If you have a traditional family with two parents and well 2.2 children seems a terrifying amount so they have three children and the youngest is autistic.  Now this family has concluded that the current methods are not acceptance based and thus they are trying to avoid all the buzz words and so on. Yet you still have a structure where 2 people have more power than three and 4 communicate much more like the rest most of the time.  They have their own way of saying things and develop code words perhaps meant to outwit the autistic youngest at an age, and experience  disadvantage already there is quickly good agreement how to speak about them in front of them and so on.

For awhile as a child I would call graveyards junkyards. They did seem to have much the same function but that was not why. Where we lived if you went out a bit you would see what were once mostly familial plots now neglected or the burial grounds of a small place that was no more.  Now unable to work out how I worked (one would think the whole I had anything to say at all might work as a reinforcement but alas… ) and on full alert as if this fully sealed in a car utterance might damage my family chose horses to warn each other that they had spotted one.

I love horses. Actually writing this now I wonder as I loved animals period you would think they would have chosen something terrifying like kindergarten teachers (not all of course but my experience was not good and as a child that is all you work from ) or if non-terror was the goal something neutral.

I of course looked all around and inevitably was quick to spot the junkyard..  Most of the car is still asking where and I have said the dreaded word. The words to explain the many things these semi-derelict plots of land summoned were not in me. I think of them so seldom now that I doubt they still are or if they are they would be a books worth.

In  Canada and  a few other places where such a question is not viewed as intrusive and the language does not have a way of asking about how one is and a way of answering that is more realistic and honest as ritually you can just acknowledge things go.  They do tend to until they don’t and save the details for people who care or a quieter moment or whatever.

The How are you script is one.  I am an adult so while I have serious doubts it doesn’t have a negative utility I understand it as things people are used to saying.  Having actually gotten very interested in this around 20 years ago I even can say with certainty that in the area I live in people are far more likely to notice if you simply leave the reply out.  They used to hear fine and move on to “That’s good. ” Now they wait which the first several hundreds of times was panic enough ( I had a middle period where things were set up in a way I encountered it less )   They might actually hear the humourous response or if they actually know you have caught on to how much you hate that question.

I was at a Bat Mitzvah on Saturday and accidentally arriving early (the only way it could happen as I did not get there on my own) after the first wave of people  who thought they might be running on “Jewish Standard Time” a phrase that represents the collective incapability of the majority of the “Tribe” to get to somewhere, into an area or even say good-bye in under several eons.  So that concern over  several people in a row asked the dread question then remembered to recall it.  Progress.

The overall point is when we tend to talk about scripts and autism we mean broken ones. As if they would have to be. Versus ones in a language with one fluent speaker if you ignore the whole they may mainly say words that seem random if they speak at all. All of communication and how people do should  inform that speech is a tiny fraction of it all but we live in very speech centered worlds.

People used to mean rote  taught social scripts or compliance with the main ones and how to get there.  No one who asked me about that meant that and I do believe I have had something to say about those in a post about honesty.

I would be the first to concede that it has to be deeply frustrating.  You have a child who does in fact as all tiny humans do, need you and while sometimes they seem upset in ways that call for fast actions what are they upset about.

That is the natural desire of parents and even having had no kids of my own this feeling when something is clearly upsetting a tiny human of my heart or might is huge.

Of course being disabled means I am a bit allergic to a the child most comply to this or that kind of thing. I mean sure at a certain point and in the right circumstances and worded exactly right  okay that level of ambivalence works best with the autistic kid who if you over-invest in an outcome will over-invest in the opposite. Adults too which I had forgotten until someone viewing me and my primary nurse one admission light years ago waged in a battle over my thermostat, asked her nurse to take me when she was discharged.

She had a brother on the spectrum and thus the specific issue might be different and I actually am not remotely flexible about the ideal temperature for a room which contains a bed and a me that has no issue requiring extremes ( science supports me even) .  Still this usually kind seeming nurse who seemed genuinely concerned if I did not die from not eating the cold would get me.  15 C  not being a temperature where that seems likely and yet  for me this was getting terrifying. I preferred to keep my head under a chair as the fancy beds you cannot even get under…

I spit data and examples of why  you should not sleep in a room that is heated to even room temperature with more desperation seeming more in need of worry which mainly comes down to the temperature in my room .  As my texture issues get worse with stress and a person who has lost an entire them and eventually then some is aware this is not a good outcome hence in theory my willingness to subject myself to an environment like that.

Watching with informed eyes without the usual elements someone saw a dynamic that she viewed as potentially very harmful for me.   If you did not speak English at all I would appear to be in danger and if you do that we both are awfully repetitive but I have more content but the situation would not have resolved without that other actor as the power is clearly not mine but  as my primary was on 8 hour shifts until the change I do have time to get more data which  I actually expect to help.  I mean most of me suspects it seldom does even with people with science degrees but it seems like it should.

The words I am saying are comprehensible although in a panic especially as she would get near the thermostat (oddly in promotional huge signs this ability to adjust it is highlighted ….  they actually changed the lowest they could go sometime after this… Grr .  The power imbalance will always win out in the end.  It’s okay I actually know how to trigger the cooling of the room despite cool air entering.   Takes more fiddling depending on the side of the building and you do need to be ambulatory which can take time or people will agree when you answer the if they can do anything with an actual request (again an actual deviation from the majority of times …. but if I am sick I am not going to decide if you actually want to be useful or are just saying that before you go even if you helpfully add “Before I go” to the mix.

You could need multiple people or one autistic one who is also strong and slightly fearless as far as weighing my need over non-logic based authority.

I see these blogs that are a few sentences and have 100,000 views a day and thus I should wrap it up… I like to write if I feel like it which is seldom.  I doubt that that will happen here.  Still overall versus looking for some key thing that might crack a code consider how many ways people speak every day that would not be easily understood.

I am 49 and thus I have in theory learned that  when shopping being asked how I am is not actually the queue for my research (not at the check-out as that is poor science ) or a queue for me to say what I think of being asked which does happen and I do tend to feel badly as of course I know they are expected to ask and small wins are temporary.  Some stores add “Did you find everything you were looking for?” and I think now that is a utilitarian phrase that might help someone. Not me as I hit the checkout when maximum tolerance for the activity is hit which varies but I will never have a hard to find object in mind as if a person is up to it you can ask the many more employees out there in the shelves who tend to know and as a bonus do not have to page themselves.

Stores seem a venue which just have to make it hard as those that ask this have a follow-up question and it is How are you or a variation that makes sense  as it doesn’t following that yet not all stores seem to get that even pretend concern for a stranger that is not in danger other than perhaps escaping without having spent more money  cannot come after utility.

It sounds odd every time and try as I might to give positive feedback on the useful bit even if not for me ( I do care about society in general or I would just give up but that does not seem to be in my skill set or 49 years of defeat might make me think I could . Not on this topic but all of them.  Country seems like it might make a shift away from so centrist outsiders see it as boring to arms – well pens, photocopiers, board rooms, and so on.   Although for that one there are times when even if you suspect a bit after most people have fled that this is yet another windmill tilted at  this phrase is supposed to mean hopeless.

For me it is more of an inspirational bit. If you tilt at a windmill. That is attempt to joust with one it will unseat you. The windmill tends to win.  Now sometimes people use this too soon and they are wrong.  Still there is a phrase about getting back on a horse which makes me wonder why this is not a motivational phrase for others.

Some windmills are worth a good effort and yes  you may have to get back on your horse a lot or while on the ground you find the means to mess up the workings and you only need to fall 47 more times to get enough of it in the cogs to end that match.

My scripts about scripts may be broken but tenacity being a bit key  if the reason for wanting to know more is concern and it was then that over time how the individual expresses or does not express themselves will become clear.

My  dog has a specific position for in his opinion I should not get up. Not an overall desire of a pet to keep their human close as my dog is far more but one where the third or 23rd time I moved him and then fell in a way that could not be attributed to lateral instability or any other thing I learned do not move the dog. He has another one when he is angry that Swedish exists but torn because he does love Netflix.  He has yet another for my human is explaining that given no human he knows speaks the dialect of Danish on all shows I have seen so far, and  The Bridge is still in production so unless a word that actually does mean the opposite in Danish or something else entirely comes along (hardly any and he would have heard enough jokes to want to choke someone if he were a native Speaker of Danish )  this seems extreme.  Also as for awhile he was launching the app himself ( I was trying to avoid typing so it was pretty easy as I had a second screen and that was the only icon on it… As big as I could make it.   Okay compared to channel surfing which he also does launching and app is a bit harder maybe..

Now my dog is not like most dogs.  He is after all a dog I have had since he was 8 weeks old and thus the amount of development his brain had as a bonus feature of me must be up there.   He developed a very extreme grooming phobia a few years ago. He was never a fan but tackled an item per day it was possible

His nails are the worst and thus the whole dog suffers so we are on a paw per day when all other things are at least not falling apart. Now when he was upset and in between so wild he cannot be expected to know who I am and all that a familiar kind of setting as he hits he might other people and other dogs as he is calming slightly “Good Boy” and all the things people say to other dogs.  Mine does not speak he Converses but as he is a dog that I never labelled anything correctly ( I paired all the must haves with a sign of course as best practices in puppy  rearing suggest….  ) Ready for bonus content on day one while I was hoping he would say something that would get him commercial work he began to learn about politics . While he can say two words or a word and a half more accurately  they are in Hebrew and Aramaic (hence the half)  . Not coming soon to a commercial near you although  stunning support workers when this developed…

They seem equally  as stunned by what will either be  lengthy on Aramaic speech   or reasons why the dog knows what I mean as I asked for the beginning of a specifically named prayer in Aramaic (  Aramaic is used when we say it but it is always explained in a service which I find odd the days everyone there would know it but people do get used to saying the same things at the same time. )

So my dog stuck in his hard cycle where he is still upset but worried he has hurt me I say the names of  bills too. Prorogation works very well and the voting record of our current Prime Minister before becoming one is pure calming gold. Now if you knew nothing of Canada or how systems of government which include prorogation (grr…  My dog) work it would seem like a script and one for  an  extreme need even. I need the dog to understand if it were legal I would find the groomer who made it this bad and do something similar to them.  I need him to know I am not mad about what he has done at a time when he was in between states so he regrets doing it and knows he has.

He and I have a language and body language system that goes both ways although being less used to it meaning something  as I am a cushion to my dog anyway I was at a disadvantage.   If you knew I had a diagnosis then the odd things I say to my dog could make sense due to that not due to knowing that he is very used to those phrases and will return him to engage the voters mode which is better than terrified  two different ways.

My benign intent and even that it was working and that someone else would say the wrong things for him .   He is the product of his species.. his genes, his brain before I got him, the rather more stimulating situation I provide a dog, our shared experiences and so on.

It can be easy to doubt that early on if you are an NT parent of an autistic child… But you do have shared experiences you just archive them differently and they might mean different things . I would guess some people wanting to know what their child means when they say lunar rover while seeming distressed (random example) might really want there to be an autistic Rosetta Stone (the real one not the product ) .

I sometimes feel at an unfair advantage as their have been times when meeting a child for the first time everything is just so much easier. Okay it tends to go that way. But all the pesky bits of communication that are not speech have a different default setting in me. I do not consciously think about how I do things other than some make sense for the size say of an individual child or that I do things in what might seem to call for more drastic action in a non-drastic way.  ( Child has fled the comments non-related, non-close to the family adults feel they can make and what they are judging him on means a lot to him as of recently when he realized this was a role he had.    Entering his room his distress is obvious and he may be ramping up.   I have watched people try to  stop the pacing or the 4 different topics or whatever for other kids ..  I got low to the ground and eventually  his pacing turned to spirals and thus when he leaned on me I could say the only true things . Not that it would be okay because how would I know …. That he was important .  Then what would happen due to that  so that when and if he came back  the big deal things would be waiting.

People are so used to stock phrases that they can be hard to recall even if you know that he might go off in a way that could be physically painful if you lie. I have seen him and the equally stunned issues of why and they were trying to help and how was what the person said even a lie…

I mean if being looked to for a post kick to a body part that well hurts enough that the testimony to the desire to understand that it is to ask when eyes are still watering… doesn’t mean that the set of things a parent says or how they act is wrong so much as a poor fit and that the right fit is a long process .

Like my blogs. No short answers.

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

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traiinimageuk

 

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

by

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.