Seclusion and Restraint

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Earth is a planet

Filled with people  who crush hope

Shred lives with laughter

 

There is no remorse

Reconciliation impossible

Lives deemed less worthy

 

Life as a human

Has never worked for us

Always alien

 

That we are not monsters

Children and dogs attest to

Yet our lives stomped out

 

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

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

Paralyzing Fear meets Medical Need

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Shabbat Shalom.

On Black And White Thinking and Other Annoyances

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

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

Here are some things I am black and white about –

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

The group I call Voldemort Speaks needs to disband.

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

Honesty is the only policy.

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

Most people are smarter than the experts think.

Speech is not the sum total of all communication.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Well he's black and white some days.

Well he’s black and white some days.

Implosion – Or the Benefits of Being a Mound.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Enough with Making Distinctions.

In the past weeks blogs everywhere have been exploding with critiques about the group I refer to as Voldemort Speaks. While it’s enjoyable to see more metaphorical allies take the field embedded in a disturbing number is the notion that one of the reasons what is being said about autism is wrong is that it is a spectrum disorder. Which it is but that doesn’t make it an ethical point.In the worst case scenarios some go on to say some people with autism lead productive lives.

I say worst case scenario because the group I don’t name is an offense to humanity. If I never wrote a single thing, or read, and if my diaper had to be changed and so on any portrayal of my life as a catastrophe, an affront, something to stop would be wrong. If I, improbably now wind up with a PhD someone pointing to me as a beacon of hope would actually be quite wrong. It isn’t usually thought of that way but it would be.

It may be an advantage of black and white thinking to see that. Every time someone refutes not only Voldemort Speaks position this way but other like minded groups, they are shoring up some disturbing notion that there is a line a human can draw at which point another human life no longer has value. I never did master the complex social skills that lead to procreation. I have though hunkered down wrapped around lives that most would view as pure misery, Wrapped around quite literally in one case as the level of uncontolled seizures that his body endured could break bones. He was at the limit of anti-convulsants that wouldn’t also kill him so there some person had to lie. He had to be held always for the same reason. He could not see, hear, speak or move in any non seizure related way. I hate to think what Voldemort speaks would say about him but thankfully he didn’t fall in their area of non-expertise.

His family, while capable of the humour that goes along with the notion that their son’s only activity was seizure activity, always treated him with such dignity and respect. They belonged to a culture where as the eldest son he had a status over his siblings and  they were affluent enough to purchase the trappings of a little prince for him. He was treated that way. His father would dress him in silk pyjamas and read to him as if he could hear (many years later when fMri’s came along it would be concluded he did indeed hear something against the expert opinion until that day) I had become as someone young, and strong, with experience with medically challenging children the last hope often of any rest from truly around the clock care. I saw lots of people in situations who if anyone could lay claim to the catastrophe vision of their kids lives those people could. Yet they didn’t. While that boy occupied and extreme so too did his family. The presumed competence well before anyone was urging people to. They did it naturally it seemed. They were worn out and tired and hoped for the sake of their other children to be able to close the door on their son’s room knowing someone quite literally had his back.

I don’t know what private demon’s they had fought to reach that state in the face of everyone telling them otherwise. His father asked me once if I had seen “My Left Foot”. I said I had. He went on to say it could be possible that trapped even more deeply inside his son there could be a genius. His father was a brilliant man. He and his wife could no doubt produce one and nurture one but the neurological reality for his child was even if that had been the case new destruction was being done constantly. The human brain is resilient but actual genius is a territory rather rigidly defined and while I had absolutely no argument with treating every human as if they may be one on principal as being preferable to defaulting in the opposite area the notion he could be and would never have the physical capacity to use even the most futuristic technology to express it was a horrifying one for me. Not clearly for his father so while I found it a scary notion I didn’t question why  he wanted to think that. It worked. It was his son and his view of his son and not mine to question even in the awkward position of someone point blank asking me if I agreed and being truthful to my bone I couldn’t really have an argument about it then beyond the nagging voice that wondered and if that wasn’t possible what then? As the movie was recent back then I suspect they would have been as steadfast but logical people tend to need a reason so my suspicion is they would have found another but I cannot know as I was not them. I would not presume to know what it was like to be them. I could only know what it was to care for their son. It was inspiring but not because he was rising above anything in inspiration terms. He is not much altered now from how I first met him beyond being older and now with hearing aids.

They were the most unquestionably, loving parents I had ever encountered. It no doubt helped them when staring down any expert that they were both well educated. I was troubled by the hint that some of what drove his father may have been the notion his boy could be a genius but it seemed unlikely that was anything other than a new motivation as he had asked if I had seen it not read it and they were clearly practiced in the art of presuming competence. They were the only family to ask I attempt to teach a second language to their child. I was used to having to defend wanting to teach the alphabet which didn’t seem like an option here as his hand could not be dragged though anything without caution.

They explained they had noticed their son was his most relaxed during his bath so during that time if I could work on 20 key words from their native language that was likely the best time. I was dumbfounded really. He had at the time no receptive facility at all let alone an expressive one. Years later with a lot of amplification some sound was getting in. I didn’t even work with him by then as he was too much of a challenge for my arthritic body early on even though I very much wanted to. My longest term client remarked to me having somehow remembered that I had worked with him as that had been at a time, when no one thought she herself was taking much in, that he could hear now. I asked her for details which she couldn’t really provide. She said well he has hearing aids now and sometimes he smiles when you talk to him. They like all the chocking risk students ate together so she knew this and was willing enough to talk to him although until that year it had seemed an exercise in futility. His bath had been the only thing to previously get a smile out of him so this was news indeed.

The catastrophe model of disability would have both the client who provided me with an update and the boy she described essentially as only burdens. That one did learn to talk, read, and write and use the computer in no way says to me that her life has more value than his. That I can talk most of the time if I talk at all does not make me better, that I can express my thoughts does not devalue the lives of those who cannot.

Both these children met ethical criteria for being euthanized at birth. They never called it that though. They always said that they would be kept warm and clean until nature took it’s course. That they would be hungry and thirsty never seemed to bother people. The client who was by far my highest achiever had a father who wanted this for her. As far as I know his position on it never changed. He had declared when her mother said no that should she survive he would never spend a dime on her care. Oddly enough this very position made him quite motivated to make respite care easier to access and funded. He was loving in many ways, devoted, but stubborn on the whole should she ever have lived concept.

I couldn’t grasp this either. Not because at the time his view point was first articulated she seemed necessarily likely to “amount to much”. I suppose to some degree my failure to grasp it may have come from having been another devalued life but not entirely. She was my first respite client and the author of my future years with children quite a bit more severely challenged than she was. She was also my last, despite a desire by the agency that employed me to cough up kids and adults more suited to my physical needs recently.

I never encountered any who were not human. That seems obvious but clearly not or why would anyone seek to lay out criteria by which they could simply be left to die of thirst or the consequences of treatable medical issues? Right now somewhere on the planet people who meet the dubious criteria of being high risk for having a child with autism are being urged to abort sons. They ignore the science that would suggest that very high risk group has as much as a one in two chance of having an autistic daughter. That anyone would think it was anything but an exercise in pseudoscience to tout this as screening for autism when it is nothing other than selecting based on gender will no doubt fall apart in the court of law in a few years when someone files a wrongful life suit. I use risk only because that is how it is described. Not that I agree with the terminology.

Wrongful life. I am told I could get some compensation from the producers of a pharmaceutical my mother took to ensure I was not miscarried. I could get more than most I am even told but to do so I would have to say I fall into a category of people who never should have been created. That the deficits linked to this medicine one of which is fairly central to who I am mean I should not have lived at all.

Since I snuck into the world seeming like a miracle as no one thought I had survived what looked like a full miscarriage made my parents so happy for not very long. I was escorted home gift wrapped in pink. My father had told the neighbours if a pink flag went up to come for a party but if a blue flag did I was a son. My brothers are typical or at least fairly typical. The lack of celebration for a son was not due to any fear about what that might mean but simply they had tried for a daughter. My mother wanted a daughter an unhealthy amount no doubt. She had visions for me like I suppose all mother’s do that I would never meet. She was worse than most about hiding that but did improve with time. A long time. A life time but effort is valuable.

My mother was more prone to believe what people thought about people like me which at the dawning of the 70s was not much better and in no way more accurate than the current catastrophic narrative. Having read I was incapable of loving her I may not have seemed worth much investment. It did to be sure make my own journey with what love means considerably longer.  While evidence of my developmental delay can indeed be found in my pediatric chart so unpalatble was everything that went with having autism that I learned after her death my mother who had never uttered the word had told some people in recent years I had Asperger’s. For her that was progress and no doubt she viewed that as less grim despite every bit of science saying in people like myself there is no identifiable difference within diagnosed populations. Even if there was so what?  They have changed what they call me 5 times now in my life if we count the flirtation with notions of residue.  How would you like to be summed up as that? It seems a word usually used in unflattering ways but to be residually autistic was supposed to be great. That there was no actual thing didn’t seem to bother people or dawn on them. It was a brief experiment. That annoying people like me back skid into the more obvious variety pretty constantly even if they could read and had periods where they seemed almost undetectble from peers must have been annoying.

Back sliding is really the terminology they used as if being normal is some fixed point. As if enjoying yourself in a meaningful way were a return to something less desirable. Yeah so what. I stare at my dolls and stack my coins. If you want to extract a lack of imagination or play skills from that question your own competence. I said this in much more academic terms in a review on the literature on wheel spinning (I would have looked at play more widely but such a staggering amount of time has been spent trying to work out how to teach kids to push a car rather than spin their wheels it would not have been possible to get an A plus if I ignored the vast quantities of research there. )

I would never have taken it up with my mother how there was no better, and that to grow up knowing you had somehow failed by simply being given a label was an actual burden not the hyperbolic variety. A child even one who people doubt their ability not only to recognize emotion but to have them, is not oblivious to the pain they seem to cause their mother. That’s the problem really as much of the pain is purely imaginary. I could in fact love her. I do love her. She has died but despite being labelled in scathing ways by many she was the only mother I can have. I have had other, healthier maternal figures who did model unconditional love for me but she bore me and lived with the pain of a constant anxiety about my well-being. That much of the initial confusion about what I could and couldn’t learn was founded on ever changing notions doesn’t undo the harm those notions taking root causes.

Like any mother she did her best. Like any mother she was subject to notions of what goes with what people think about her kid. It’s definitional for mothers. Not that they go blindly along with it but that they do care. That my brother could handle a full table service before the age of 3 was also something that mattered to her. He had to as his was a more elegant time and place.

Having autism has more often than not been too hard for me. The most successful thing I did this week was a mad dash into a store to buy the three items I could get without risking coming so undone someone thought something needed to be done about me. A real risk as I was not capable of meeting any social convention beyond sticking my debit card in the machine and hammering out my pin before fleeing. I am not so oblivious as to not notice in my peripheral vision that makes people uncomfortable. I no longer care as their social discomfort at having to see me is nothing akin to needing to go there. My doctor had urged when trying to be useful to me that if crossing the street and entering the store was too much I could go to Subway (a sandwich place) and get enough for three meals at a reasonable price and safer. He too is not oblivious to having to dispatch me almost without useful support, week after week. His concern when laying out the whole so you will cross the street, enter the store, get a, b, and c, pay, leave and go home plan was evident and he faltered and offered up the alternative. I said in the kind of comment often taken for humour that for the kind of heroic effort entering anywhere was going to be I was not coming away with three meals worth of food.

This was hard. This is the sort of difficulty though that could be remedied with resources that do not seek to change me beyond making things less stressful and healthier for me. A single hour a day of someone who was actually allowed to help me shop or go shopping for me would be life altering. The only way to get that right now is to enter a program that would entail a change of doctor. He mistakenly thinks I have an abandonment issue rather than a change one. Pretty sure I do know the difference and  I do honestly think he is right to think he is more useful in his usual area of expertise. He just has the misfortune of being the only hired help person to not have changed in the past 20 month so to me changing him out at a time I can’t even be counted on to do something so routine as crossing a street and entering a store seems like asking for new complications.

I’m an adult. Most people with autism are. When I read notions of not being able to house autistic children becoming adults from my slummy place it’s hard to understand where people are coming from. I am not cute. I am downright rude at times if a person opposes me in a fundamental way. I have needed to be. I am not all that sorry as it has been a useful skill.

Like every adult I was a child but unlike every adult sometimes people still do treat me like one. Sometimes it is needed. I was not bothered by my doctor taking more pains with my plan for the immediate future as someone could come along and question his competence if I had managed to die in pursuit of bread and milk and bananas. I was happy to see some sign he recognized this would be hard as sometimes I feel like I say things are hard and he says I know but nothing changes. This at least laid out some of the trickier bits. Acknowledged that the bigger store might be well beyond me. It was since two days later I consider myself to be recovering from that. It had to be done though.

No doubt someone is wondering how the heck can I say all I do here and not be able to do something “easy”. What’s easy is always in flux. Usually hanging out with my dog and computer are the easiest things of all. I actually had a home supporter worker (I get 100 minutes in theory a week)  asked if I had eaten today which in 18 months of having them this time, no one ever had. Her time was up but she asked and asked if she could make me something. Technically without having bathed me anything I couldn’t make for myself she is not allowed to do. Strange and arbitrary but true. I am also in theory supposed to help her but while that was always emotionally exhausting now that it is also physically so I get a pass on that one. Since my beloved dog is a safety hazard, and must remain in another room at all times merely because he is a dog (imagine if a dog could have autism. Oh the never ending supply of untruths they could rain down on his tiny head) and I am not willing to subject him to the torment of having me out of his sight bathing even when it was needed is not going to happen. I fell a scary amount of times a few months ago because my little safety hazard needs to see me but he is my primary support I almost said person…  He is my constant and devoted companion. In a world that looks at me strangely,  views hospitalizing me when I get sick enough from totally avoidable stressors as somehow more the done thing than say providing more and much cheaper support, my dog is the most useful support I have. Don’t tell my doctor but my nagging abandonment issue is based on Shadow’s furry life span issue not any human being coming or going especially those the government pays. I tell him he could have done better for his human. I secretly do doubt that though as I sometimes also joke if not for the spiritual and logistical issues with being reincarnated as my dog that’s what I would be in my next life.

The problem is like for every human I know of 100 percent for sure this is likely the only life I have. It is because of that sacred. My casemanager was a bit flumoxed when trying to bring visions of eternal damnation into play should I think of killing myself when I said oh technically Jews are a bit vague on the afterlife and there was no such thing as eternal damanation for us. She seized on G-d as if thrown a  lifeline despite her professed lack of belief.  I had to explain well yes of course belief in G-d was fundamental but not this weird one you couldn’t fight with about things. That by definition a Jew struggles with G-d so in theory I didn’t need to submit to some other person’s version as G-d as the struggle is the point. Yes we have a few rules. All of which can be broken to save a life. There is no added exemption clause for a life like mine. I am here so my life is sacred period. No buts.

Without my faith and it’s community I may have killed myself or died from contemptible neglect of society to my needs. Sadly they use the fact my faith community so strongly helped me when it was most needed to actually further excuse any assiseance that I am technically allowed in policies that are enshrined in law.

My life, however hard, is not just as a spiritual matter worth saving but as an ethical one. As is every life. On a purely spiritual level life or the worth of a life is simply not ours to decide.  On an ethical one that works for me too actually. Any slide from a position that all of humankind is equal and equally deserving of the things that sustain life if not one that people subscribe to as part of their spiritual journey, is it too much to hope some of them appreciate the danger they put themselves and others in when they depart from that point?

Returning to autism. The fact that some do become taxpayers is not the reason we say to Voldemort Speaks that no  you may not catastrophize our condition and rob us of our humanity. Please no one ever think I am more deserving of not having my humanity ripped from me than someone lying on a mat in a developing country who never says a word. If you wish to oppose this group please do so but don’t grasp at things that by your having reached for them devalues people.

The Myth of Recovery,

I read a article that on the surface seemed to some in the autism community at least more positive which is a bit of a sad commentary on what we have become used to. The article is here: http://seattlemag.com/article/autism-identity-or-disability?page=0%2C1 . It contains perhaps the most damaging notion for both adults and children on the autistic spectrum. That recovery is possible. They often put it another way that we can be recovered like some junked guitar found in the dump I guess. I don’t know.

I understand people need hope. Even if your child falls on the end of the spectrum where people mainly just think they are extremely strange I know a parent struggles. Nature conditions parents I think to have dreams for their children and then a doctor comes along and puts a label or two or three on the carrier of those dreams and well I can only imagine it must be very hard.

A good parent learns I suppose to be open to dreaming a new dream. Altering it often. Ideally realizing as pretty well every parent no matter what kind of child you get that this child is not on the planet to do the things you didn’t get to, go that one step further than anyone n the family has before or demonstrate they too have a cherished family gift for whatever.

I will never know what it is to be a parent, let alone a parent with a child with an Autistic Spectrum Disorder. I do meet a lot both online and in person. The internet being a bit of a mixed blessing for a hermit.

Recovery is perhaps the most damaging to people who occupy they part of the spectrum I do. We have technically competencies in language and a normal or insanely high IQ. I have a degree which was often on the wish list of parents who would come into a an autism chat many years ago.

By the things focused in in that article I have recovered and this was indeed the notion of my youth (which is holding up services a bit as no one with an adequate grasp of the DSM seems to be employed by the agency making the decision) You finished speech therapy and someone, somewhere declared your autism residual and your parents had already been cautioned that mentioning the word would cause backsliding so you spent time with this weird notion the word somehow applied to you but if you brought it up or heck even dared to read a book about it your parents would yell that you were not autistic. This always seemed odd to me as the only people I knew like me were in those books and I read the first one when I was 5. Protected then from being yelled at by the fear it would send me under a table or down to my crazy kart fro 2000 of so laps of the basement.

The hard truth of the matter is a child like I was may experience brief windows in time when what is expected of them seems bang on with what they can cope with. We may almost have passed for normal during the grades of 4 to 6 if I had not spent one of those years talking like a robot the entire time (which thankfully did not bring on the speech therapists again). Spending every academic subject in the library wasn’t helping but on the whole those years will count as the most normal seeming of my life I fear.

We had, , once the notion that I was probably mentally retarded had been shed, acquired a new and better identity. One that gave some leverage for me to be a little bit odd I suppose in the eyes of adults without questioning outright what was wrong with me. I settled into the life of the super gifted and talented as they would describe it when trying to have me moved to private school.

I can sees how much better this seemed. How in a family with a good history of denial it would be better to totally attach themselves to this. I was too gifted for the gifted education available was the claim so multiple attempts were made to have me shipped away and private citizens even made the occasional offer.

For my parents the period where my school district became very insistent about it was a hard one. They had moved me from a city I was comfortable with. Friends I had picked up during the glory years when I was away from class too much to seem too weird and who were thus inclined to be kind to me even though I wasn’t keeping up as we entered puberty. The last kindness I would have from a peer group was when one of my inner circle pulled me aside and insisted if I were to wear a yellow shirt to school the time had come to wear a bra.

After we moved if I try to think of it from my parents point of view they were very conflicted. They could see I was not able to make friends. That I withdrew to my room and seldom spoke about anything. My grades were excellent though and the school’s main concern was not that I fit in socially but they were ill equipped to educate me not because of my autism but because I had actually finished with the content by the third grade.

Many hushed discussions were had and many impractical solutions come up with as my parents still saw me as something that could be recovered. Heck they had been told I pretty well had. If it were not for those few clingy bits of autism they could glorify in having a child to intelligent to be educated anywhere within 600 kilometers of where they were.

I don’t know why my father always turned both people and school districts down. He was in the odd position of not having to fight that the laws about an appropriate eduction apply but rather people would come to him and he would say no. Did he suspect another change would undo me and in the absence of any family member to wonder how I was functioning I would slide all the way back into whatever it was they feared?

I was bullied brutally for many years but the yearbook evidence would suggest I had peers. Peers who were highly inclined to join in on the pack violence so it was a strange time for me. I placed myself in structured activities which sometimes worked and sometimes didn’t. A sports team can be a very brutal place even if you are good at the sport.

Army cadets was my salvation in a way I think. A youth program that told you what to wear, what to say and what to do. It has more of an academic component than it looks like from the outside so I did well in it. Progressed rapidly up the ranks which gave me greater control and information fast so I was not caught surprised by some thing I was expected to do. Within the context of cadets while undoubtedly still and outlier I had actual peers.

As you age and gain rank you take increasing responsibility for the operation of things so I actually achieved a great many things on the planning and organization still while still young which strike me as odd now having bottomed out of the tests that measure those things.

If one had viewed me when out with my Cadet Corps. You would have though I was an impressive teenager on he cusp of adulthood. If you stepped closer you may have had cause how I tactfully maintained a newly minted officers sense of control and dignity but spared my platoon a night march through a swamp. It is I am afraid a rather specific toolkit as far as diplomacy goes.

Not that I was always on the ball with that. When getting an award from our Colonel one day, he remarked I was female. I replied, “I am aware of that Sir.” I actually was not being sarcastic sadly but it could have been taken as such. What else was I suppose to say as that one had not come up.?

A few years later when I had an honour that would later be explained to me as being largely due to my height at a big event with Prince Philip well… History repeats itself. There were half a dozen people of my rank sent to get crowd control “volunteers” from the rest. At some point someone came out and said I would be in charge. I could see my training officer come towards me at that point but someone said something.

There were shouts of protest from those who felt they had seniority despite our rank but I had no clue either. Someone slipped up to me and said he knew but he wasn’t allowed to tell me. This indeed proved to be the case. I would learn after the fact that someone taller than a royal has to stand in this central spot. I would learn it after Prince Phillip came up to shake my hand and make small talk which protocol dictates is appropriate. No one had told me about this part in the program and as he approached I got nervous. The cadets in the UK were not accepting females then and who knows he may never have run into a female in this point position but he uttered the same words as our Colonel had years before. I could see a look of alarm cross the Colonel’s face but wasn’t sure why until my typical response had slipped out. The Prince did not seem to notice but several higher officers were either in the middle of trying not to sputter or trying not to laugh. He said a few more things and was gone thankfully. My training officer came over and explained what he had wanted to say beforehand. That this would happen because since any bullet fired from the crowd would have to go through me.

I was not impressed. I would have done the position having been told to with that knowledge and in Canada the odds of a bullet flying through the crowd are pretty narrow. The worst thing we had to deal with were the kindergarten teachers who resented that the kids could not simply sit in front of us but those were the orders we had.

There must be official pictures from that day somewhere although the Prince and Queen kept a pretty tough schedule back then. I would have looked like a teenager to take great pride in if you could not I suppose hear my replies. I can’t remember the rest of the conversation at all because I was a bit distracted by people turning various shades of red and purple.

Autism being a shameful word to utter my mother would not have said this was due to any intervention on her part of declare me recovered despite the stamp of residual in my chart. By then even a mother who deeply wanted a daughter like other daughters knew she didn’t have one and she was not one to focus on what I was good at as it was my social deficits that she was obsessed with.

In the post I made after her death I make it clear I love my mother. Those were words I could not have said with certainty up to a point. Certainly not then when shes may have longed to hear them in a way that wasn’t a synonym for hanging up the phone.

I spent my early years not looking like I would amount to much. I spent the later years having sometimes a conflict from appearance and reality but sometimes being in situations I was competent enough at to almost seem normal. I took comfort in the notion that I had read about a poet with a bad stint in the army during the worst of times as people did sometimes attach a just before my last name as if I was incapable of comprehending some of the things that went on that should not have .

Forever after I have lived not knowing how and how severely my autism would impact me. When you find some incorrect data in a coded study and get paid 300 dollars for something that took you less than a second that seemed nice but being dragged around the psychology department as “that student” not so much.

Depression would further complicate my life and like my arthritis it does not play well with my autism. They claim it make my depression untreatable so 4 times now they have concluded electricity might work better. This go around with doses of horse tranquilizer to boot.

I cannot as I type this cope with the sound and intensity of the world out there without help. It is too much for me. I have lived for 20 months in a state of disarray due to the simple act of having to move. Anyone temped to label me recovered when I was hitting milestones like a university degree may wonder what the heck happened but in truth back then university was my functional place. I knew how to be be a student well. Not the bits that included partying or even knowing where the party was but understanding what the professor wanted and getting those A’s that I could do.

Now my work is similar. If viewed just by my capacity to do my very flexible computer based work one would probably rate me fairly high. I don’t now why the ability to do that remains when everything else is gone but it seems to. I set rules as safeguards though about not working past certain hours and I made myself come off painkillers before I resumed as it is complex work sometimes.

My boss does know about my autism as does anyone I work closely with even though to date we have never met in person. It doesn’t matter for the work I do for him. It matters a bit more when I have to run a team as I can forget the nice words. I put them on a too do list actually to remember to find something people are doing well and make sure they know you noticed as my team are volunteers that is kind of important but I can’t be dishonest so I will never be the type to gush.

Still it seems a bit strange that a person who had no hope of getting her coat and phone back as it involved going out in day light (brighter and more crowded) makes the decisions I do.

The internet is a great gift to people on the spectrum. I think more so than any other group. Parents can chat with each other, autistic people can chat with each other. My facebook friend list is filling up with autistic people I have never met but they think enough like me to be less annoying than the contingent of people you have on there because you can’t say no

It can however be used to spread terrible things as a truth. As positive as the article seemed in many ways the truth is if you have autism you have it for your life. Some people seem lucky to me in that the things thy have learned seemed ta bit more static as in they can talk and that ability doesn’t tend to flee but I have to suspect they have their own challenges.

I cannot change my autism. Sometimes I hate it to be honest. That doesn’t mean I want it cured as it has formed me, any hypothetical cure would not change the structure of a brain well into adulthood. What gets removed in the process may be debated as well.

I am normally in a state of acceptance about it. I am honest about it to the people it will impact so it doesn’t have as much potential to blow up with everyone wondering why but the way I have been the past 20 months I described to my psychiatrist as much like living without skin. He is a very ethical man and he was concerned he was hurting more than helping and I had to say right now it all hurts. I can’t manage any of that and this is a record time of being in this state.

In some ways as no one is my parent my situation is not so different from a parent wondering will their child ever do this for the first time or again. I am my own parent in a sense. Only I can take hold of myself and try to convince myself the day will come again when you can go outside in the day without help, the day might come when you can go back to school. We are dreaming small dreams right now so settling for being able to walk the dog in the day seems sensible.

In an hour my ride will come to take me to my swing band. I am competent at swing. It took a long time but yep I can play swing in my sleep. It caused what I am told a never seen thumbs up to a percussionist at another band I agreed to help last night when I was feeling quite terrified overall. (They have a huge and important concert on Saturday) Yeah functioning as I am the wisdom of agreeing to be a ringer for a concert of this magnitude of importance seems a bit stupid in retrospect but oh well. It did give me a rare chance to have someone by positive about a skill I laboured at. I value my ability at drums over that on the computer or the languages too numerous to count now that I can read. I value it because it was hard and that could be something to tuck in the backs of people’s minds as they struggle to stay patient with the progress of the child. As they struggle to avoid the trap that thinking of them as cured will be and so it goes.

It’s not a journey any of us whether Spectrum or parent asked to be on but it is all we have. Like all lives it will I suppose be good and bad and comparing myself to others of my age brings no happiness. I am deeply spiritual and although it is a concept that upsets some, I choose to believe I am as G-d intended and oh I do get so mad at G-d at times. (Jews are allowed by definition more latitude in giving G-d heck in case anyone worries for my soul)

When all else has been gone my faith has remained. One might think as some upset people have mailed me that it is a cruel G-d who would make people that would have lives much harder than others and struggle so much and so often just to viewed as competent and at times even human. I do not think that. I do not make guesses as to why and I have yet to get an answer. Sometimes I hope the fact that I can express this is part of the why.

I make a suggestion to some previously unknown blogger and a problem is solved, I visit for a day with a boy with AS and he works out that autism is not terminal, I take a new child under my wing so someone is there to say what his parents cannot. I am like you. I know it is hard. You can still be what matters to you on this day so rest a bit and then come when you can. We will wait. You are important.

I almost cried when uttering the last words to the child of a friend the other day. I thought what a difference it would have made if anyone had been there to say things and to simply be leant upon during what seemed like a catastrophic time to him. The odds that someone would see it was not a big deal over nothing seemed slim and added to the shame. Shame nipped in the bud I hope at least that time before it bears fruit.

 

Skating all over the Spectrum.

I have complained before about the treatment of speech as binary and I have complained about the way functioning is defined and explained and why I don’t believe in the labels high and low. The past couple of weeks illustrated a bit better than I actually might want why my feelings run so strong on things that are non-issue for most.

Anyone who knows me or reads my blog closely knows things have been rough for about 20 months now. I fell into a massive tailspin when I had to move from my long term residence and nothing so far has been able to bring me out of it. I think the local health authority screwed up a lot in the process which hasn’t helped at all but there you have it.

If people know a thing or two about autism they usually know about change being hard but so hard gets a bit difficult to take. I have trouble with good change even unfortunately so life can be like walking a tight rope. When I first moved into my completely unsuitable and probably not up to code place my case manager wanted to start looking immediately for something else. I knew the risk of coming completely undone was too high so here I still sit. It’s a hovel but it is a familiar one. (I hope my landlord never finds my blog)

I have numerous fairly serious health issues on top of my autism. Some of them are of course complicated by it. Actually it is likely they all are. I am often reluctant to start doing something because it is hard to stop. This is far from ideal if you have arthritis and may be why we have had 3 surgeries (two replacements and one repair of a replacement) already in 4 years sigh.

When I wound up in sophistical for what was meant to be a short stay really as my doctor knows nothing can be done for me bio-medically so keeping me away from my dog, internet and work seems unethical to him the stay went on and on. It went on and on because apparently his ethics were okay as long as things about me were being fixed even if those things had nothing to do with my reason for being there. There was a lot to fix as my ability to tolerate texture had made me completely unable to eat for long enough that almost everything you can measure in blood was out of normal range as they put it. They tried to treat some of that with oral pills even though I said I don’t absorb iron that way no one listened for almost 3 months so several values kept going the wrong way.

They ran the tests my doctor wanted done as far as my autism goes, which bore out what I always have said. That if functioning were defined differently (and since I am always right it of course should be) I would be considered low functioning, perhaps on a good day at the high end of that scale I don’t even believe in but that is important for getting services.

The tests had me the required three standard deviations below the norm for all sorts of activities of daily life. I have to say despite my saying the thing about how well I actually function if functioning is what we are looking at I was a little taken aback. More than a little. They were saying both what I did know on one level and more importantly what they needed the report to say but I felt worried and confused a bit. I asked my doctor for a copy so I could read it more closely and try to process it but he is not very organized and so I am still waiting.

The reason I don’t like treating functioning as a binary thing you can measure is for many if not all autistics that is not how life is lived. At moments of stress even those with impressive jobs struggle in ways that NTs do not. Some of us… people like myself slide all over the place on pretty every symptom that counts. It is stressful to say the least. It was that sliding actually that put me where I placed on the tests as they worded things very absolutely. Losing the ability to speak sometimes was worth almost as much as not speaking at all it seemed and not being able to call strangers the way they worded it was like not being able to use the phone. I can answer it. I can call a friend or family member. Oh well. My doctor’s goal was services and he must have rubbed his hands with glee when he saw what tests were being asked for, although no services have been obtained yet sigh.

It is a tiring thing to be depressed for a long time, to have multiple surgeries during that time, to have your blood all out of whack because you cannot eat properly and so on. It goes on and on and of course you get to the point where like the spent salmon you just do not feel you can go on. Of course a salmon doesn’t but human life is more complicated.

So what happens when you are metaphorically kicked in the guts by having the services you did have taken when you are at your worst? If you are me you regress pretty badly. You have more days where you simply do not want to have any exposure to people. If you have to venture out you have more incidents where the words will not come and so it goes.

While full on muteness for an extended time is usually rare the slowing of my words to a speed that people don’t stand still for or confuse as a symptom of my stupidity isn’t . It is also the one I am most prepared for. I feel a bit bad about it at times because when it occurs around family and friends it almost seems manipulative. Not a fair way to put it when it is not something you wanted to have happen or could control but everyone pretty much prepares you for everything for a long time afterward and so on.

I consider myself Jewish and well I am Jewish beyond a shadow of a doubt now so I guess that is good but for a long time I lacked the courage to even try to be a Jew among Jews. My sister-in-law is Anglican and that was a familiar stetting so I did that and tried to make peace with the trinity every week when that was the peace of advice a scholar in residence gave me when I asked him about it. Despite his lofty rank in the church he had his own doubts but felt it was okay if he could get them in order for the declaration of faith and then he had another week before he had to worry.

His solution worked for me for a long time. At Christmas I was almost always at my brother’s house and going to the midnight service had become a tradition. Tradition is a bit problematic with me because pretty well anything I have done twice I expect to carry on. So there was the year my sister-in-law’s mother of blessed memory was feeling a little tired, and everyone else was enjoying the conversation and wine. Somehow the unthinkable happened and people agreed to not go to the service. I completely and totally shut down. I have no idea of the span of time. For awhile the whole gathering spun to that rare place where I could no longer comprehend their words then I could hear them but not answer.

I got to the point where I was aware that pretty well everyone in the room was very uncomfortable Tears had streamed down my cheeks for a long time and I am not much of a one for crying. People tried to talk to me at first and then gave up. I could see them looking for guidance but eventually things resumed with me sitting there mute and miserable, acutely aware I had to some degree spoiled what had made them want to stay in the first place. They had been cozy and happy together and I and my need for routine and subsequent quiet melt down had ruined it,

There is nothing to do about it When I could talk we did not talk about that. Was clear enough that people were relieved when I could but I suspect most thought bringing it up might bring it on again I do not know not being them.

My sister-in-law had always been as good as her organization level allowed her to be at trying to give me a sense of what would happen during my visit and on any given day. For several years after this incident she was almost comically obsessive about it. She sent pictures of a new car they had bought well in advance and so forth. Really it was helpful and I am not complaining but hand in hand with the feeling that I was getting much more information about what was going on and what to expect far in advance I felt guilty because of why.

I have been told guilt is a useless emotion but that hardly stops it. Feeling guilty about something you cannot control and didn’t ask for is no doubt even worse but I was younger then and still a bit hoping to be more like everyone else there. I had not given up the thought entirely I could catch up. So the useful things that came were also reminders that I was not like others. Everyone was loving and kind but that I needed this stuff was something I so wished I didn’t. I alternated between feeling well this is living the dream as far as no surprises goes and feeling horrible for how much thought people were putting into things that I so wished could just go naturally.

I don’t know that anyone in the room had even seen me in that state before. What I was was known but since I usually can talk and function was expected, especially at the events that happen over and over again. You might peak in and not guess at the best of times and holidays often are so while I think my sister-in-law had talked to me rough to know it could happen in theory , it is not theory when you make a decision that leads to someone being in that state I guess.

Lately every day has had the potential to have me like that. Most have but since I am avoiding humans it has hardly any consequence. When I had some to see for medical reasons I did become both mute and so totally unable to come anywhere close to looking at people that it was a worry for me. I like to look at their id which at the hospital is usually worn around their neck. I couldn’t get that high. The books that say fake eye contact never do describe what to do when getting much above the midpoint of the stomach is beyond you. Of course since I hate those books it is not like I will be looking to them for a solution.

More things went wrong after I had my surgery. Something that would have been catastrophic actually had it not been labeled an administrative error the next day. The damage though from the 24 hours in between is still with me. My case manager can’t work out why even though I tried to explain it. I suppose on a level if they thought more in terms of my autism and less about my depression it would make sense that functioning lost through a traumatic event isn’t regained instantly just finding out it was a mistake but they don’t seem to think like that.

Despite being done with humans I went out among them today because I have friend who claims to be stupid but is an evil genius when it comes to thwarting my plans to isolate myself or worse. She has a son who I suspect is on the spectrum. Both her boys love me it would seem.

She claims total innocence in the fact that the one likely to be the spectrum showed me his gratitude drawing on his wall. She sometimes asks me to talk to him about stuff she does;t understand and she feels I am more qualified to deal with but the topic currently looming is going to require some warming up and coming up naturally so I was making conversation in his room wondering if it would and he pointed to it.

I was up there just under Mommy and slightly over Chocolate cake. Daddy and G-d and a few other things made appearances but I felt yet another tentacle sink in. I love this child and I do not use love lightly. Problem is I am not that fond of the planet he lives on and it’s a balancing act where his mother consciously points out she needs me for him and incidents like this which still leave me blown away. What do you do when a child is grateful for you and a small handful of expected things? (although his mother was surprised he put G-d I said she shouldn’t be given he pays complete attention at services and if the rabbi is there is so rapt and still you would not guess his age)

His mother more sneakily had placed a picture of the boys in my backpack which she hoped to get into my house and set up as I made my painstaking way from the car. However since once of the things we do with the boys is play with my tablet multiple trips to my backpack were made so I found it and had to check if a child had put it there or if it was meant to be there.

To be completely honest my weeks had gone so bad and I was tired enough my ability to hang on much longer was in doubt and now I was in a horrible quandary which I managed to make worse as I was helping with the boy’s bedtime..

My evil friend had been telling me they had hardly any percussion in their huge concert band and it was a problem but her band meets the day before the one I have played in for more than 24 years does (I did do a brief stint in her band years ago) It is hard for me to be among those dreaded humans multiple days in a row as who knows what will happen? I had refused and refused and then earlier I had seen that the concert was Jewish music and I thought well if I can make that better by being there (I had my doubts) I probably should. I wasn’t willing to commit past the rehearsals and that gig and so I expected the conductor to say no but as I was trying to settle one child in the answer came back to if he wanted me on those terms as simply YES!!! so there I was stuck on the planet for sure for 20 more days and no doubt no matter how many cruel and stupid things happen to me in the mean time in those 20 times that a little boy is grateful for me will sink deeper and deeper into me.

It’s far from the first time I have helped people with their kids. I was a respite caregiver for 24 years and although I never looked after someone on the spectrum professionally in that time I met and mentored a few who’s parents I came to know.

One thing that is unique about my evil, genius, friend is that she just sees it as totally logical that she seek help from me. I had previously sometimes found it delicate trying to explain what I thought was going on or was even 99 percent sure was as no matter how out of their depth a parent feels and how much they express the desire for some perspective on one level they can’t let go of the fact they must logically know more about everything about their kid.

My friend does not have an iota of that hang-up. I go over she will say this will go faster if you do it matter-of-factlyyand so on. She says it was immediately apparent from when her eldest first met me and that he subsequently asked for me that he related to something about me and I suppose when I could explain a few things or get him to get things done that would have taken “forever” otherwise my utility was clear.

So tonight I had to go into a room with 65 strangers having sworn not to see humans for a few more days still (except accidentally). I had to shake hands a few times something I am thankfully good at. Say my name a dozen (less good as it is a name they won’t have heard) and then play music I had never seen. Once I survived all that in a week where several times I couldn’t speak at all I must have come to rest for a bit somewhere else but who knows what tomorrow brings? How curative is a little boy’s innocent gratitude for a person who he actually could tell was like him and he tried to articulate it at service once.

I am an ethical person and multiple times this year I wondered if it would be best to just not see them. That if the worse were to come to pass they would be more spared somehow but it is likely too late for that at least for boy one.

While the love of a child is clearly curative it doesn’t fix any practical problem we have with our health authority’s stupid and downright negligent ways or any health problem really. I know having had times lately where I tried to hide in places I would not have attempted it as being discrete with my autism in public was always something I worked on (not always successfully but…) After a blood draw I walked right up to a wall and smashed me head into it to feel better (my doctor has been considering putting me on those blockers that in theory prevent this from making you feel better but my arthritis makes it impractical)

I am of course grateful for my friend and her children as well, chocolate cake and G-d would make my list, and work I can I do without any contact in person with people at all, and of course the best dog on the planet. I suppose that is enough for right now. The sliding around will carry on. Right now I feel afraid of going to the band I have played in for 24 years a full 14 hours in advance so there is little to be done but deal with that.

Shattered Hopes

I am glad I made a point of talking about the elements of my life that are surprising sources of support or more supportive than one might expect them to be as today was a day of smashing any hope I had managed to build. This is something that seems to happen every half year of so the way support works here. I should have known to expect it.

I spent part of the summer presumably qualifying for supports for my autism. A novelty in my adult life. A program had been created and I tested in the range that should have gained me entry although I wondered as I had heard many stories of people applying but none of people actually getting it. This program might be one of the all too common variety where it’s head thinks the mission is to guard the pile of money the government hands them rather than to actually help someone. I don’t know.

For me the prospect of help that took my autism into account was exciting. I could imagine so many of the things that had been a source of frustration with help based on other things not being an issue. If someone wasn’t coming around because my mood was low they wouldn’t tell me to solve some problem by simply trying harder. Presumably if I had a problem with a texture support based on my autism would not have a worker telling me what a fuss I was making over nothing. I dreamed of people clearly communicating and making sure I actually understood what they meant not what they said (as the two do not match as much as one might hope) Oh the dreams I had. I don’t know why I was foolish enough to even dream them. I had to fight very hard for the right to finish university versus being put on a shelf in a group home and then having finished there was no one to supply just a little support. So we wound up on a different shelf where we watched time go by and people have lives and where everything that other adults had and enjoyed seemed just out of reach. On this shelf we could be exploited but what we could not be was become a full member of society. We could sit and watch those who’s diapers we had changed surpass us in some areas of development as they grew to their mid teens because we had had no help and support around some sensitive areas.

I am 45. I didn’t have silly notions like I would learn to date, and marry and have a family. I thought I would have some help with organization. Some encouragement regarding getting more education and some help finding suitable housing. Small dreams in a way compared to actually having the full kind of life I see all around me. Still that’s what this program claimed to do and they all seemed reasonable with support. I am more than intelligent enough to have my Ph.d I just need a little push, some help jumping the hoops and so it goes.

Today I learned my doctor has doubts these people will ever get back to him in time to set anything up before my current support runs out. Because unsupported would be catastrophic right now he’s in a bit of a panic. I feel like I live outside of time and space in a way right now. I am not in a panic. I am sad that it seems to be going this way but we’ve ridden this merry-go round of the idiotic ways systems work enough times in the past 18 months to be well beyond panic.

All the same when my doctor said he would step aside as my doctor as he was a barrier to my getting support from another program. I said no. He asked what if it were not my choice and what was left of my world felt like it was crashing in around me. The pressure built in my head. The words caught in my throat. I managed a few more exchanges and I knew I was done. I had wisely prepared my backpack when things started to collapse. I protested a few times that “this is a developed country” not managing to get off that stuck track. Not managing to articulate anything really. Certain my world would come to a complete halt if all this happened.

I don’t know what he will decide. I have no intention of being supported yet again by a program that is focussed on my depression not my autism. I have been depression free for periods of up to 12 years whereas I am never autism free so where is the sense of this? I also know inevitably any program that can’t take my autism properly into account will just get fed up with me. They will reach weird conclusions like the one that led to my current services starting at a very low rate. Service providers don’t tend to ask about what they don’t know about. They will just try to fit me into the mold of their other clients and the way I don’t fit the thing that supposedly causes my depression to be untreatable could be ignored. It might be belittled it might be treated as a curiosity. All sorts of outcomes could happen but what won’t happen is I won’t get support that fits my needs. It is up to my needs to fit what is on offer it seems. How dare I defy the biomedical model by not getting well in the usual amount of time? Why on earth do I have multiple conditions? This makes me too much work. Eventually questions of mandate could get me dumped anyway.

I will never know because I have no intention of seeing an unknown doctor and unknown people. I really though that if my doctor took the consistent failure of the system to support me properly through the proper channels the system might bend they would see that it was probably preferable to spend 400 dollars a month on support versus 35,000 on institutionalization. What sort of crazy society do I live in where that is even on the table? I’ve been sentenced without having actually committed a crime although my doctor did admit the support I would get were I to commit one would be vastly superior to anything on offer now.

In the autism community support is the hot topic always. The lack of it contributes to tragedies.  I am very intelligent yet I always need some degree of help to function effectively. In times gone by oddly enough society would have accepted that better than it does now. In non-developed countries outcomes are better so my protest that Canada is a developed country while I meant it to mean they could act more sensibly towards me actually makes no real rational sense.

I have worked hard the past month to rebuild some of my life. The things I can rebuild on my own I have but without some external help it is too tiring. There is so much going on with me beyond the autism but the autism dictates a lot of how I react to those things. We had a care plan in place for my knee operation on what to do if I wound up too stressed too speak. It wasn’t as good as it should have been because although I had mentioned the slowing of speech and the difficulty with it as a more likely outcome most people didn’t recognize it. Nurses sometimes flew out the door before I could get fairly important words out but that is the life I have lived for what has to be considered at least half a lifetime at this point. Some older nurses especially seemed to come on shift wanting to convince me I was just fine as far as the autism went. A lot of nonesene and labels don’t you know?

All of that is behind me. What is in front I don’t know beyond the next few hours. I feel too ripped apart by the news today to trust any health type person. I feel smashed and gutted and simply fed up with all of it. I did everything I was asked and in the end nothing changed for the better at all. The only thing to change is I was almost half a year older.

Was I naive in the first place to think support was obtainable? I am not sure. A lot of my experiences lately make yes the right answer to that question but when I was a young adult I had a period of my life where I actually had too much support so it makes sense especially given the very nice brochure they gave me when I did the tests that I would think okay this could happen doesn’t it?

What actually happened is I hobbled, blinded by tears as fast as I could away from the source of the news. I am a klutz so the walking into several glass doors was a given. I will never understand why they even put those in places where people might cry but they do. I shouldn’t have walked as far or as fast as I did so my knee was not exactly doing well. Five weeks post op seems like a lot but not for a knee operation when you have bad arthritis.

I got home and in this bizarre interlude when I was barely able to keep from crying someone from my congregation came by with meals and groceries. If she suspected how close I was to total collapse she did not say.

I walked the dog and foraged for blackberries.  Sometimes foraging makes me feel better since it says I can take care of myself (although I doubt you could live  on blackberries alone it can be empowering) Tonight it didn’t help. Tonight nothing will. I will do some work and spend hours trying to sleep probably. Tomorrow will be interesting as having concluded the health authority will never actually produce meaningful help my avoidance of the useless and very time limited stuff currently in place will probably aggravate someone. They won’t see it the way it is. That right now the “system” feels like such a source of wounding that anyone sensible would stay away. That in my own way when I don’t answer my phone when they call or am not here if they show up I am protecting myself from further destruction.  Further destruction being hard to imagine actually but that is how it will feel.

As for my doctor I don’t know. He is spread too thin and while he was the best doctor I ever had he’s also become the main deliverer of news I can’t bear. News that seems to seal my fate in ways I don’t want it sealed. I suspect then although I said I would not be okay with him not being my doctor he won’t have much luck being it either,

My case manager asked me earlier in all this as she could see it coming if rigidity was part of autism. It’s rigid on my part that knowing services exist that would help me, and knowing how poorly I function without them, and knowing I qualified for those services that I should get them at some point in a reasonable time frame. She may be right and certainly if I could have been flexible enough to adopt the more hopeless viewpoint all along that I was very likely going to wind up with 100 minutes of cleaning as my only formal support maybe I would feel less smashed to pieces now. Silly me to think when everyone acknowledged that wasn’t enough support that they wouldn’t repeat something that totally failed me again. But they will.

That’s what being an adult with autism can mean some days. With no one to fight your battles for you off you march stupidly trusting that things will be as you think they should. Later you emerge metaphorically bloodied and so distant from the world around you that you are not entirely sure you would notice if a bus hit you. You emerge with no one to send in to battle again for you and want only to get away. You’ve been totally crushed and what it would take to undo that is the very support they have made it clear you will probably never get.

And now to work I suppose. It won’t change anything about my situation but my colleague has expectations of how much work he will se when he wakes up. Unlike the system I meet my obligations.