nsbeach 2514x1603


Howling into the ocean gales
Hands clenched
Arms flung outwards


The winds affirm my pain



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



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.