Autism and Healthcare

Having  an experience which science suggests is not unusual for the autistic adult. 

Having had a health crisis brought on by an allergic reaction to Humira I followed a string of instructions on how to get better from it only of course being me things kept getting worse. 

Today I had to conclude I needed to make arrangements for the dog so I could go to hospital.  

The doctor did not properly examine me at all before breezily suggesting that I just double my water pill.  He barely listened to how I have kept following one set of instructions after the next only to arrive at a point where I thought some attention to what was going on was badly needed. 

He definitely did not listen to the perhaps related and perhaps not  – of my knee over rotating which was a difficult one as I heard him treating someone with a comparatively minor knee issue with great care. 

Great care is not something most doctors seem to feel this autistic or any really are worth . 

Last month an American fellow autistic friend turned the average age of the American autistic which prompted a flurry of discussion and well wishes that we all exceed the average. 

It’s generally held to be all of 32 for American autistics and 50 for Canadian and the EU.   I am 50 and well the toll it takes to find you will rarely be treated for even the most painful issue is considerable and saps the conviction your life is sacred.  

While there are tools meant to help autistic people more successfully get medical care those only work if you have a doctor who is invested in them working or in your health.  

We are now up to 23 unique encounters where only one of them resulted in any thing close to appropriate care. 

My issues here were both complex and scary and yet if I hadn’t  finally managed to mention the one thing that the new treatment plan kind of rests on he never would have checked or asked about my ability to go pee. 

I’m sitting in an uncomfortable chair again, drinking fluids so I can pee and go off into a world that manages to show too often how little value I have 

I have massive amounts of edema and I am over-rotating my right knee in ways that should be obvious to people and it might occur to them that it would be painful – only it won’t. 

Blogs often aim to be encouraging but there doesn’t appear to be much encouraging to say about the autistic adult and the healthcare system. 

I’d like to think it will change but in the past 10 years for me personally it has gotten way worse and one chilling way it gets worse is that I am sometimes seen as likely to have an intellectual disability and this has been used way too often as a reason not to pursue treatment. 

My rheumatologist who I am not exactly a fan of at this point also thought I had this issue but he does get the sole win in a depressing run of people for opting to treat me. 

This should truly frighten us with what it means.  Being autistic often means people will have very set notions about you without regard to how accurate they are or anything like that.  

This doctor mostly talked to me as if I was a child and in  way too long a day the only people who were remotely nice to me were those who had to treat the part of things he was even willing to consider as being a problem, 

In defense of my rheumatologist to my GP who has to get a depressing number of notes back from specialists and so on  and thus was alert to the very strong possibility this was again an issue. 

I almost cried explaining that I  can’t care about the fact that I am not intellectually disabled versus the whole there were so many doctors who thinking I was opted not to treat.  I have to care that this wasn’t relevant to if I should have care as a good thing. 

We live in a world where people are that easy to discard.  

One where statistically I almost never encounter a doctor who isn’t in some sort of ethical bind as of course not treating doesn’t just do harm by letting some things get worse it sends the message over and over that your life has less value than that of the “normal”. 

We obviously need to do better than that. 

I wish I  knew how. 

I’m in pain and seated for maximum discomfort in an ER which has ignored clear needs in the past. 

My ability to advocate for myself in this sort of stressful situation doesn’t exist.  

The tools that are meant to help have the premise that if autistic needs were communicated better to the health care provider that would  result in better care.

Does anyone know how we work with the fact that over and over we will be see as less than human and treated in ways that make that clear ? 

Homelessness From the Inside


I thought I had a fairly good handle on homeless issues. Afterall I had spent nearly all of my adult-life in non-profits that intersected with it. I cared about the issue deeply believing something that two men also articulated last night. That something that is both rare and needed was the simple recognition of their humanity. A simple greeting. Some words.

I had read a new report just a few days before. I knew the number arrived at, how many they thought they missed and that possibly the difference made up of people who no longer wanted to be found might be low.

My scumlord – an appelation I came to prefer given not only were there serious hazards in my place but he not only paid no attention to them, I do believe he became afraid that I was right as far as how it would work if they were inspected.

I actually have not idea how that bit has not happened but that a dispute resolution process in which I had no hope of participating as it was a teleconference so while a support worker who has less than a year with my did do battle heroically in the end the judgement ran against me.
I’m not going to dwell on the finer points of how that might have been avoided.

With an order to vacate actually giving less time, suddently I was in need of a shelter bed.

Welcome to the realities of the biggest,scariest place to have one – suddently as a bed open was not to be missed.

I think I did actually understand it a bit better than some who say they do. Now I’ve experienced what a deluge of people who need to be in from the cold – a lot of them addicted, some sex-trade workers, alcoholics…The group there are people against helping.

Then there are the others. For too long in Canadian cities it has been possible to work and not have enough to get by. We live in the second most expensive city in Canada to live. Needing non-government housing is a calculation on how long you can manage rent, and hopefully food.

Right now our economy has a lot of jobs but the cost of living seems to climb further out of reach for many. The people I have met here who work are proud of that and rightly so. One explained how as soon as he had to say he lived here his co-workers became less social and so on. Stigma had reared it’s head.

There are of course some who work and then drink fairly hard to forget where they are. Others though keep their eye on the end goal – to leave here where much is provided but which probably leaves any simile or metaphor about how scary a place can be way behind in the dust.

A good tenant since my teens, once disability started allowing you to keep some of your earnings, I set things up so my rent was paid before it came in. A system that did not exactly leave me well off but did allow for saving in my usual, short, medium and long-term ways.

Then you have a collision with a kind of landlord that you had never encountered. Your health having taken many turns for the worse you wonder if you had somehow tempted fate with the statement you told yourself about that: Oh well as long as my eyes work and my hands I will be able to work.

This seems such a small wish in a way and work doesn’t just help on the money front but the sense of utility and purpose is important.

I miss it and while both sitting and standing are painful enough, and standing not always the kind of thing I can do wll enough to look at the jobs where standing might be something they could work around but having given up an activity I love two year ago when placing ice-packs in my back no longer kept the spasms and pain away for even a 45 minute set of drumming well hello social isolation.

So here I lay in a place where on Friday there were too firearms incidents. Having poor informtion on when my primary support person would arrive I was awake for the first one and returned from the business of making myself fairly hypothetically homeless.

Not that it matters.

My disabilites are a non-starter here for safety reasons so of course my left replaced knee became sometimes non-weight bearing right when I needed it to keep on going.

It may be wryly comedic that on the day I didn’t know I would be here the biologic I have been on to slow the progress of it’s munching on my eyes – the only thing I care about went into an extreme allergic reaction.

At 5 am of my first night here I had to hope that if I moved the steroid, and antihistimine treatment up and used my epi-pen I would live.

I’ve taken to telling my dog when I say the affirmation of my faith because it’s time and when it’s one of those I might die moments.

I had accepted that I would die from the extreme neglect of my previous facilatior. Leaving a poem on my blog without explnaion so it would not end with panicked cries of I was here and this is why I might not.

Now obviously I have more to say and I wish one part of that was things did eventually run more smoothly and better but smooth was never quite achieved and on the support front some of that could be hard and even erratic.

When my first evening here turned to night that some of the people I had killed time with thought I was just visiting came out. Although they agreed that everyone could become homeless or as part of my escort to get a new lock last night with one leg working about as well as it has and the other a grim reminder that being disabled here was a safety risk and could get you kicked out much more surely than things on a long list of rules they read to you and make you sign that you have heard them then you are officially a resident of the shelter where every terrifying way of behaving can happen and well they do.

I took a lot of pharmocology type courses back when I thought my academia plan would run through to I might want to apply to be prescribing psycologist.

I know a lot about recreational drugs, other drugs and addictions although some of what I know of the latter has a personal kick in the stomch which if you didn’t have to play the life you are dealt I would have been okay with that added insight.

Initial and bad advice – and oddly the degree I feel I have called on not a whole lot overall I know enough about human behaviour to know you have to.

I think it was while waiting to see if I could get into a poker game of a form I had never tried alredy having established the pot was points that I asked a solid man who in the days since has shown over and over how thoughtful he is, what he was doing – I could see him cutting something up and in all my courses I have done up close and personal with brains but not the recreational drugs we studied and which not a day passes now where they don’t make news.

I didn’t understand the first name he supplied and so he said it was crystal meth. He told me he snorted it and I knew that with addictions their is a hierarchy.

He began to list reasons why I should not worry about him and I could say he had been completely honest and I had yet to see any reason to worry.

He belongs to a set of people who on seeing someone like myself want to make sure we know the difference between “guys’ who do things like this but who are not harmful to others because as I have joked if you had to apply to be homeless it would be a job I would not get due to being unqualified.

I have an easy time with the men as I do out in the reality I am used to where being autistic is a big difference. Here people will say how f###ed in the head they are if it comes up which it has to at times. No big deal given the state of nearly everyone else.

In a sitution like this I chose to take some humourous satisfaction of things you had to be accomodation challenged to do or learn. Texas Hold Em Poker was one and then I had my first fist bump, my count being 7. Homeless hockey is only for those able to stay focussed on a great league created by one guy here. It’s too complex for the many some of whom weren’t addicts prior to arriving in something that at times looks worse than anything you see on those popular shows about prison.

That I technically have a place with full moving pending and a bed doesn’t change that I had to come back here after Friday night’s Shabbat service. The cognitive dissonance that rears up after the somewhat familiar Hebrew school dinner and service – I say somewhat because I had never attended it at the Conservative synagogue.

The day that kicked off with the upstairs going into locked out mode to contain one incident, had me go out to look at a place where due to not having parents who would need to sign off on it, that was a big bonus. A nice place if a bit of an odd set up where once more I can get my hands in the soil and so on.

Onwards to my old place where a man who should be dubbed super rabbi for willingness to do what he can which in this case was to get the packing of my former place underway..

We are in that time of year where those who have opted for the more observant life find themselves in a mad race with the sun.
Work will stop, delighting in Shabbat will commence: Oy if only we lived closer to the equator.

For 3 hours your floor is locked down for cleaning and so on. My support had to then overlapped with it and so I arrived late for lunch, exhausted and having to find something to do until a time I suspected but could not confirm, that Shabbat had began.

Time away from here is always a good option but given the issues of addicts and valuables you begin to feel you carry a lot of your life on your back. Yet having heard there was wifi at a place with decent food off I went. Oh right there is the tricky matter of the most wonderful dog in the world being with me. I think more on how seeing him help others kind of helped with the initial and frankly ongoing sense of panic and worry which is often really rational.

Another feature of the biologic which I turned out to be allergic to is it suppressed the immune system. In the patient education material from the company I dubbed the “happy shiny people at…” leaving who out just in case, the worry is that people who will be in close contact with you have had their flu shot. You get a TB test and so on.

I had hoped for time to get an increasingly sore throat seen. Trying to explain that I temporarily dwell among people I hope that the flu is the worst of it although one of my latest roomates has pneumonia and well all the other possibilies do loom large.
In a state where I could barely move – and not without pain- I resolved all the same to get to the service I knew would help with the fact new settings and new people are extremely hard and so however deprived of both my community and learning I felt at times just going to the synagogue seemed like it was going to be a bit like that 11 years ( 1 I thought and 10 bonus ones )it took me to get me over a threshold to a service with the group I had chosen quite young, understanding interest by any other family members was low – and for some for good reason in a way. Due to the awkward business of knowing G-d’s prescence before I knew any name to describe G-d, I have always believed.

I normally think certainty is for some kinds of math but otherwise could get in your way of learning and as a disabled child grew up I read to may descriptions of that looked like projecting holiness on those who were more disabled than I was. Or not.

This experience could easily make those who practice without knowing for sure that they do believe wonder if there is a reason for it all.

I am the opposite although I did comment that if I didn’t believe in G-d I could think there was no reson to. Like the days I lay wondering what damage my fall down concrete steps where my head had been seen to strike them at least three times – studies support that autistics have a far greater time getting approprite health care.

I hurt. Knew I had just a bit of retrograde amnesia which meant I had to have been unconscious at some point, and I apparently had no hope of actual care I found not stubborness but bonus levels of tenacity in a religion that had me repeating our declaration of faith often in case I died.

While a long, hard walk for someone who felt tired and sore I have never had a Shabbat with community where it didn’t help.

Someone started out walking me to where they had to part ways and that kept happening. For awhile a solid group of people who know that to spend time we don’t need to here is unhealthy and potentially other problems.

I was greeted by the younger members of “the tribe” clinging to railings informing me that I was late. I had thought I was either late for dinner which would be okay as getting the “ishness” of Jewish time down isn’t easy for the hyper-punctual.

I joked, possibly to myself as my brain and I sometimes engage that way that the other possibility was I was very early for the service. To date as far as anyone knows no one has been banished for this but my life trends towards the improbable.

The service was energetic and fun. While I had hoped the children I call “Mini-me” and Destructobotwould be there I was a bit stunned to see how many children there were.

I managed to dance in the kind of circular way we do so I felt it would be safe enough and I sometimes think on Shabbat and another day I can in fact dance.

Apparently a lot of unlikely beasts had been gifted to the congretion according to the rabbi in a beautiful lead up to entering what did appear to be teddy-bears into the Covenant.

The kids had decided on five Jewish senses and a Germanic custom explained for what the tiniest teddy-bear members of the “tribe” were wearing.

The bears got certificates and all and people were saying mazel tov to those who apparently were now grandparents to teddy bears.

While I usually put tribe in quotes I suppose because some Jews don’t identify with the origins and cannot see the tribe like qualities that persist to me Jews continue to be a tribal people.
It would have been handy if thinking this made actually crossing yet another threshold.

Then, thanks to the weird dimensions of my walker a woman with an actual engineering degree had to work out how and where to put it in.

I kept saying I had an address even if the swift downing of the sun and thus the onset of Shabbatmeant if I had a text with my new one I did not know it.

Children and teddy bears, many of favourite songs, food and so on replaced by this.

A few days ago when it seemed like my disability could get me kicked out I was mostly thinking about how to form a non-profit and start a shelter to address that.

Watching what was actually positive going on and being a bit of a rabble rouser being all in on any non-crimnal, non-aggressive outbursts of well whatever.

Mealtimes have been a progression from the first time I actually made it to one to find bacon on one offering and tomato soup the other.

One against my religion and the other long known to be hostile to my stomach due to the toll long use of arthtitis meds makes.

Having been offered a bag lunch due to my dog, who would need a dog sitter, the last one had been given away. I was told that the more obstacles to helping me I had the harder it was.

I felt surprised that my religious dietary needs were that or that the medical one was as well. Surprise may be the wrong word for it.

Yesterday what my actual level of kosher was came up from someone who actually was familiar with an academically supportable position which is unlikely to impact practice.

Surrendering be a Jew in these circumstances would have the same kind of effect giving up on my mut being here.

I felt so happy when a wonderful woman in my congregation re-homed some books of her father’s with me so when briefly dealing with books I could grab the essential ones.

I have to do somethings pragmatically but such is life.

Watching the various levels of crisis here from a Jewish perspective where an obligation to help strongly exists but already knowing from being a member of other marginilized groups that they are often the most generous with each other I thought more than I had earlier on how at this particular shelter things could and probably have to change from within.

I had joked about going for client of the week when I limped around with my walker, wearing the gloves of those who could catch something from what they handled.

Improving the environment helps people and if it catches on other good things may or may not follow but that it should be relatively simple to get a gift card which a staff member commented could be the client of the week and staff member of the week go to lunch together.

I would be happier to, and likely will use my utility at this when I leave but driving healthy, pro-social behaviour is needed as it is an environment where some people come in with no real hitory of any thing deeply problematic and it’s easy to slide out of boredom, desperation, a desire to belong.

An easier thing to do is help keep “Homeless Hockey Night in Canada” going and make just a few organizational suggestions which had the person who had the things and made very even teams although of course you need farm teams think we were a good team.

He babysat Shadow when I went to services as I attend to who Shadow is non-stressed with given when he can’t see me he’ll have a hard time for awhile.

You can’t stream or photograph from here but seeing the people who I have known make up a significant demographic of homeless -Canada’s working poor a lot of people like the idea of actually challenging the face of homelessness here.

Still that we hope to is out there so keep your eyes peeled for our hopefully with more batter Homeless Hockey. My teams slightly epic win fell on the right night for “In Canada”

What other people might not be thought about?

Do they think of those who have a wake up call at 0500 and go off to the jobs they have? Does anyone think of two guys willing to walk with me to get a new lock after my left knee gave out?

An escort comes with a bit of a price so we sat for a bit and drank our Gatorade, ate some chips, and discussed our situation with a balance of humour and hope.

It isn’t that strange that the people who live in the “anything goes” shelter -and some have been here awhile- already believed that making things better from within and changing how the public percieves homelessness is up to us.

I say us despite resisting it given the circumstances because here I am with an address that needs setting up – a very lucky person really but dwelling on issues of I was without address for pretty much no time won’t help people I had thought some of my earlier works had helped.

It won’t help me.

Although from the perspective of the long-time without home activities which get them out of here doing something they want to, or learning something is ranked higher than things they appreciate but know as well as most well homed people that these are surfaces fixes.

Most are quick to say they still appreciate them but preparing the homeless for winter makes the wet and the cold less likely to kill but doesn’t accomplish what most want – to be homed.

Things I had not read about is that people can get tent kits as some people sleeping rough is a given.

There was a more serious fire at a shelter on the same day I arrived back from doctor visit two for my inconveniently time allergic reaction to be happy a ventolin was among the replacement items.

I had seen it other places, when the displaced arrived. Children sleeping beside their parents. I tried to think well this is just two but that was one place.

I did think that they all were sleeping soundly and together was good. Torn a bit because when the aggressive removing of children from homeless parents who were in fact good parents, ended, the thought was not that society would adapt to homeless kids as a fairly endruing reality. The hope was that keeping families together in a presumed short time to housing was healthier.

I watch the posts from larger centres of a heart-breaking number of school lunches being prepared by groups of people.

When it was a new thing the then one school bus parked where families were sleeping that night seemed good as the child could have the stability of staying in thier school.

Now it does seem a lot like people stopped seeing the problem in sufficient numbers to end it.

In 1982 our government said food-banks were temporary, heck homelessness was supposed to be , the shelters and food banks and other resources born in a long economic event that was a depression but that is a triggering word in economics so perhaps they should have used two or three r’s when calling it a recession.

We have had a government that drained the Canadian Home and Mortgage Corporation dry . It builds social housing that a person does has to invest in but then pays the ideal 30 percent of their income. They do other useful things as well. Important things unless I suppose the hunt for a balanced budget clouds judgement.

I have always known, due to my involvement in a group that played some events for psychiatric group home residents the value of a hello, a brief exchange of words. If they called to me as “the drummer’ I knew where they knew me from.

Years ago now I observed for 12 weeks at the same time, given I was downtown anyway how some people were willing to give money to homeless panhandlers. I knew from more busy times that eye contact or a hello were a long shot but despite caps and cups money would be sent in the general direction.

To find what they were holding out involved too much seeing of the panhandler.

I asked a person if he minded he thought the money helped but being asked this cheered him up more.

From the outside of this human deluge of suffering which indifference must have been part of the problem as otherwise it would be in the list of long broken promises. There would be more calling to the government to be accountable.

The other does seem to be what I just described. The homeless are dehumanized by many and even demonized by some.

Last night a fairly rowdy group normally, turned up the volume on Santa Clause 2. They had favourite parts.

Still it won’t be magic that gets more people out of a part of a triad or risk for almost everythiing bad. 1. Housing insecurity, 2. Food insecurity, 3. Social Isolation.

They do obviously go together a lot and every study done-including by our own governments are various levels supports that people having a place is beneficial to the entire community.

Those studies did not surprise me but what does is how few saw that as a call to action.

If the citizens of Canada and in our case also of British Columbia won’t draw a line on when things have gone too far what then?

Can anyone explain why to me or some of my recently met fairly decent citizens? Working, hoping struggling people who if you met them elsewhere those of you who have yet to see it from the inside would likely choose as a friend.

I do get that there is a desire to sort people which leaves more stigamitized persons out of luck. It happens here too. You exchange names and sometimes people tell you they don’t use but it alsoc comes up in rooms where using happens .

Everyone here, other than the occasional dog and there was a cat here is an actual human being.

It’s time to truly know that so we can reclaim the Canada we were. This began as a slow slide in 1982 , and picked up speed. While it’s actually typical of governments to not take up things non-profits and groups of citizens have picked up a duty of care – that care is stretched far beyond the limits.

I walked my beloved dog last night. A fellow resident was handing out a few small things – the very man I described as having told me what he was doing when he was cutting up his drugs he told me he had something for me too after creating some bell for a man who like quite a few uses recycling for revenue. A man with a level of infirmity who nevertheless on his recycling rounds brings back bread and so on.

He said he had something for me too and having lost my little flashlight it was very handy as heading up to his usual patch of grass the needles littering the area were visible but what might be lurking in the next spot weighed heavily on my mind.

For some here society has given up and others have brief periods of luck that way. The lesson you learn from the inside is that many of those who have given up hope that the so called social safety net isn’t as mythological as the Santa of Santa Clause that held some entranced for a bit, they or I guess I should use we have not given up on each other.

Demand better from politicians please. Threaten to use the tools politicians gave us. Like recall.

Or just nod and say hello to the homeless like our very polite society does all over the place.

The headlines scream of crisis and that there is one far more multi-layered and frankly horrible than ever comes up is true. Whatever your willingness to commit to making it better from the simple acknowledgement of a shared humanity to larger things, please, please do.

December 2nd, 2018


Last time I Posted

For people wondering why the last time I posted it was but a single poem it was at that point in time events in my life had caused me to accept I might die from CLBC’s neglect.

I wanted to go out with a poem versus the panicked record of all of that.

Now that life has thrown me yet another huge curve ball but I am in fact still alive I have something to post which  I hope to do more with over time.

Stand-by for my  homeless experience.

Something Different – A Review

My life is so limited lately that to continue to only blog as a way to howl into the universe that I am still alive despite all failures of things meant to make that more certain, despite the total complacency of people who accept money to ensure I am not at all sorts of risk I that I am in fact at risk of.  Well, I knew this planet was not for me from my earliest days so moving on.

One of the ways I pass my life where I feel like I exist outside of time is to watch too much Netflix. It actually does the least harm if I get stuck in it as I am not typing or attempting something dangerous or which will result in days without sleep and sore joints.

Their offering “Atypical” was one I watched when it came out. Wondering how another teen with autism would be portrayed.

I am mostly reserving judgement in how the show does use functioning categories because there is some challenge too them as well.

I found the show to go heavily on the everything is somehow okay side though.  The protagonist is 18. Has a part time-job which he apparently holds without much issue although he has a side kick and an understanding boss.  It is in an electronics store so having sometimes contemplated that as bliss if I could stand better it’s a maybe. I would have liked if employment as an issue came up somewhere though.

On concluding he would like a girlfriend, Sam proceeds in a methodical manner. I have no issue with that as I found that very me.   I kind of did have one about the outcome.  Realistically while his younger sister gives some sense of needing to be there for him, having needed to be there for him he is not seen being bullied ever.

He concludes he wants a girlfriend and gets one. He makes some understandable missteps along the way but this is high school.. He not only gets a girlfriend but he allows her to train him to talk about penguins less.  This was perhaps one of the most clearly problematic bits about the show.

The other big issues in autism get skirted because the father says of functioning labels they don’t really use them.  When Sam has a bad melt-down on a bus there is the well that’s life with a “high-functioning” kiddo”.   No clear shots across the bow at them get made but the promise of some one hopes.

Although Sam’s therapist has gone into it motivated by a sibling who remained non-verbal and his mother is very into all of everything that one might consider the negative kind of “autism mommy”.  Again it is the father who suggests towards the end of the season one that an identity beyond that would be a good thing.

The show is a comedy so the kind of heavy-duty why it is not just a good thing but a necessary thing is not going to happen.  You have the one character occasionally challenging the whole way autism is framed by those who are not autistic.

The actor portraying Sam is not autistic. A sore spot of late within the autistic community and a familiar one for the disability community overall.   It’s not that he didn’t do a good job. It was a role he wanted and one he feels is his favourite thus far but this does suggest that they were not looking to cast an autistic actor.  Is this ever going to change?

So it is high-school with all the potential horrors and yet in ten episodes Sam has one day where he winds up under a lab station for part of it. For those of you who know me I do keep saying under is the superior place to be for all forms of distress.

His girlfriend who perhaps could have been used to explore some of the things Sam has done that upset her like his pro and con list. Lists are lovely for the kinds of things that seem big.  Neurotypicals likely proceed through all sorts of things without them but I have made lists and plans for getting just a regular friend. I used the best that science had to offer the second time I did it as I knew more about what science had to say on the matter.

That a list is a way to make the impossible seeming slightly more probable.  It also takes something which at 18 is harder most of the time than at 49 – the whole social arena and contains it. You have a plan. You can proceed with your plan. I used to have plans for every area of my life that I evaluated at least annually — some quarterly.  This was especially true for the difficult parts of life.  A plan. A list.  These are real tools and they are mostly things which are fodder for comedy when someone Sam’s age who is also on the spectrum is enthusiastic. Perhaps the comedy wouldn’t be diminished if a sentence or two of why they are so wonderful happened. Maybe none of the experts the show consulted knew why.

So having gotten a girl who openly behaviourly conditions him to speak about his passion less which sure you could say this is a lesson in compromise but what it says to the autistic viewer is that life is always a trade-off where less of what makes you who you are is what the world wants.  If you become less you then you may be rewarded with acceptance. It is a long shot. That too is not portrayed in the show.

Another long shot is when said,  girlfriend wants to go to the winter formal and this would be too overwhelming for Sam.  She goes up against the PTA and when all sorts of incentives rain down on those who want a dance of the kind where you can hear the music booming  versus one where the music could be delivered through headphones. See aforementioned job of Sam’s.  Still who thinks this would happen. That the mother’s on the PTA who oppose it strongly didn’t peak in high school and were the mean girls then and have not changed much.  Maybe age wears down their talons but they have fixed notions of what a dance should be.   I am guessing these formal this  and that being much bigger deals in the US and I never attended a single dance in high school. We didn’t live in town and gas by then was tight and well the 5 minutes I spent at a Junior High one so my computer matched “date” could get in for free ( who knew they weren’t all free)  was about enough.  Much like my 10 minutes at a toga party my second day in residence before most had arrived filled my toga party requirement of university.

Then there is Sam’s other desire. To have sex. Again approached methodically he improbably pulls this off at the winter formal. I mean it would have been probable if there had not been some drama ahead of time.  He handles the loss if his girlfriend, however temporarily by being convinced a quest is needed and the logical one leaves him soaking wet but having won fair maiden. No one mocks him for being soaking wet in formal clothes.  Right.  Was the author home-schooled?

It works and he and his beloved do the deed right there in an igloo his father made for him (not out of snow so surprisingly Sam does not deduct marks for this).   I was disappointed  by this bit.  It acts as many books and oh so many expert writings on the topic as if in 18 years nothing has been picked up about what would be appropriate or not.   Having sex for the first time in a display in a public place would seem like it would not only be something Sam would know is not appropriate but given it isn’t a real igloo and much of the other comforting things from his Antarctica themed room are not there. Just the fakee igloo which while Roald Amundsen, fresh from his North  West Passage exploration did indeed use.  This, skiing, sled dogs, and being willing to eat those dogs (this comes up if you ever seriously consider applying for a job in the North in the why dog sleds are still better than snowmobiles section of things to consider) no penguin ever set foot in them.

Consider too if you remove the sound of music blaring, and everyone has their own headsets, hopefully set at hearing friendly volume this might be rather hard to do at a silent dance.   If it is something that either teen would consider appropriate. I would think it would present larger challenges for Sam but given his girlfriend’s previous efforts on shaping him in the way things are done also a huge let down for the whole love those you can change model citizen.

Snow may have silencing properties which I appreciate when it actually snows here but this just looked that way. It also looked like something I couldn’t touch but they leave Sam with just the standard set of sensory issues so things he can’t touch don’t complicate his tryst.

Overall ten episodes isn’t enough to judge if it will get better or not. The issues the show skirts around would really have to be tackled in some substantive way for it to be a semi-win.  It isn’t horrible and it did leave me wanting Sam’s room very badly  but it isn’t a realistic portrayal of high school period let alone autism and high school.

It leaves too many key things as just side bits the Dad hints at and given he is alone there people may think he has the issue for not “doing” functioning levels.  Or thinking of autism that way. Then again so would the DSM V which pretty well point-blank states the numbers for each category in terms of functioning can fluctuate and they are defined with the premise that support is provided. It could take 20 years for that filter into the minds of even the “experts” let alone the general public so we can only hope that either this show or some other handles things a bit more head on that are issues largely because an inaccurate way of looking at autism hard set and is tricky to shift.

While never a diagnosis I have a report that say my previous diagnosis was “High Functioning Autism”. I did like the report though as the next paragraph my “Very low functioning” on  those lovely scales of adaptive living is noted.

So here’s hoping if Netflix wants to tackle autism they do it both head on and with some insight from those who are actually autistic.

Howling into the Ocean

I used to take my pain and fear and feelings too primal to name lest they grow down to a wind whipped ocean and howl into it.  You get an answer of sorts if you stand just right.  You felt alive and this brought relief once.

I cannot get to the ocean now and the tears I wind up crying when I think of how many people have had to decide to do basically nothing to ensure I survive are not do to the familiar contempt for my autistic life. Or my poor life, my odd life, my seemingly useless life to those who judge but because it is such invisible pain and invisible fear.

I don’t want to die of an intensive neglect that should  be impossible but I suspect it happens a lot.

I don’t want to die because I am seen as someone it is safe to ignore.  I have no parents. I have no children. I do not have a primary claim on the heart of anyone.  I know how when I have gone to appointments with a friend that alters how you are treated. You are seen as someone who people care about.

To have zero services and have the person who was supposed to fix one of them be the log jam in ever having help again should not be possible.

I know they cannot be aware of  how horrible life lived so utterly alone becomes. The 6 days of trying without success to get fully into bed. My dog is a genius at ensuring he gets his needs met and then I return to the same level of stuck.

My good computer was a casualty of my over the bed table breaking and thus some avenues of escape are less possible.  The big issue though is that it had three non-working keys so I could not get stuck in non-productive typing on it.  The 6000 word emails I never send or the blog posts of pure nonsense.  I typed for a week straight and my hands were discoloured and swollen but with nothing or more specifically no one to break the pattern on I go.

I used to be good at what they call “switching attention” and I hope when or if things ever stabilize I will regain some of that ability. I know the role having seen a person plays as for just awhile I can focus long enough to do something needed.

I miss a mythical pair of parents I guess. While in the last years of her life my mother was more understanding and accepting my father was not. That is when it was just him and I phoned because it was one of the days he would shower and he called back to say he was out of the shower – a system necessary because in some  decision  makers mind the elderly need just two a week. If he thought to comment on my life it was with impatience given I was not senile it was my not remembering to eat he took issue with when he did . Most of the time it was short this seconnd call that signalled he was alive. A system to ensure he had the dignity of being as clean as he had been when my mother lived.

A system he was fairly compliant with for reasons I understand as it is a life-ending fall I fear most of the times . Sometimes lately I wonder if it would not be a mercy for me to die in the exact way you do learn to fear if you are alone and fall a lot.

I had a bath last week.  It was momentous and dangerous but when your feet and lower legs have been colonized by a bacteria despite your supposed eligibility for home-support that never re-materialized  and you reek of things you should not well eventually you have had enough.

In the process I did fall three times. The stepping motion is on where my legs sometimes  give out. One was just into the tub itself. The kind of fall I regard as a good fall.  It is a sad system where one grades them but the other two were the bad kinds. Or the semi-bad kinds as it is the counter-top that is right beside the tub that could end me and twice I had a near brush with not keeping my head from hitting it.

After though, I could not help but wish it had been that easy. My head smashed in.  Dead because I wanted the dignity of not smelling of urine and worse.  Of not having feet that were in worse condition than a street person’s as they have foot clinics for street people. Just finally free of this invisible, tortured life.

Although the difficulties exist because of autism plus physical issues it is not autism that makes me wish I had died from trying to have a bath. I want to be clear on that. It is the  many members of the “system” who have jobs which are meant to prevent the many worst case scenarios I represent.

My housing. Not just an issue due to accessibility features which are not here but because my landlord scoffs at notions of building codes so rats can fall from the upstairs, through yellow resin insulation coated in dust, through electric wires and down here. The drywall to cover it is in the closet with the water heater but the make shift wiring and plumbing make that impossible.

I do try to not think of the substantial increase to lung cancer risk from this exposure but my asthma and my dust allergies make the bathroom a hard place to use.

Almost 6 years ago appropriate housing was the “powers that be” number one priority with adequate pain control a close second.  One wonders if life would have improved had they been lower on the priority list.

I have joke I am a hermit but mostly all of this just makes me feel more alone than I thought possible. Each passing day that intensifies.   The fear does too but mostly it is a sad, sad way to live.

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Isolation versus Chicken

In the past months human issues seemed the main concern. The ability for an employee of the government to ignore me so entirely and when that had the logical consequence of poor care it was not the service provider she did anything too. That I guess would be work.

In order to be one of the perhaps not so lucky few to even have services through CLBC despite an IQ over 80 you adaptive functioning scores need to be pretty awful.  Mine were more awful than they needed to be and it does kind of suck to have the education to know what that means. To wonder if anyone at CLBC does when the laughable task of replacing your service provider is yours.

While it’s true this would involve slightly higher skills like this in activities of daily living if your adaptive functioning scores suck your very ability to stay alive without help is doubtful. When I got the test results I worried they would be used to push for a group home placement.

You never think that finally getting services for your autism will have so little to do with autism or you.

In a program where way more people with Fetal Alcohol Effects qualified than autism I cannot compete on subjective measurements of disability.  I mean I had been a CLBC contractor and knew my facilitator was voicing disability discrimination that of course they screen individual service providers for but apparently not the high level “help”.

I am a more hopeful person than I get credit for but we still have issues from that fall in July that the only thing my facilitator did was stall my doctor and then claim my hours determination came from that assessment.

I had several things tested and sure now ensuring they only got the adaptive living scales would make sense but I am accused of a life long history of cheating downwards on IQ tests.

I had taken the WAIS twice ever. At 18 the excitement of the tester on day one made me throttle things a bit on day 2 as I did not know how they scales work and that this would not alter things much. I do really suck worse at performance but I was 18 and my usual self and trapped in a psych hospital and the last thing I wanted was to get anyone excited.

I had never taken it again. What’s more I told people about my interest in 120. Optimal for success as smarter is too different from others but to have an edge and still be in the range of others is it.  The testing environment was noisy and I did not want to do it. If you grow up with a disability the ways you get tested and observed vary  but you loathing of it all which just seems to prove this is not in  fact your planet is real.

Magnified in the years between 18 and that fateful day by being in classes which used in class experiments to show the limits of the human brain. Again my brain was not human although the prof. had anecdotes for each odd result.

A savant skill so extreme the years of avoiding anything that could show you had one, well it was a work study in the worst department of all to be an outlier in the area of savant skills.  The fuss and attention were something I had to repeat the lyrics to “I am a Rock” to be distant enough and then the expectation that I would want to use something which came with no guarantees for those desperate grad students which I did not built..

For the purposes of the program my IQ is irrelevant but if that phrase has an effect on someone who , well I am amazed she can hold a professional job so of course I seem less disabled than others but I wonder if she is confused about my motivation as there was none. When I couldn’t hear the first question of a test I didn’t want to take I just went slower.

I didn’t attempt to hide that there were some scales that interested me as that is noted. I wanted to see if years of computer gaming had improved my spatial skills and while not helped by poor visual ones they had improved and one other.

If my doctor or the psychologist had asked other staff which I needed them to do as aiming for a number I wound up getting exactly only prevents the impulse if it is clear the test is useless for you.

IQ doesn’t alter how disabled I am. It often makes me get stuck in fights of thought that perhaps if I were less intellectually able wouldn’t happen.  It is lonely too.  It threatens the insecure who viewed me all wrong. Not as a person with multiple disabilities who can’t call strangers , whose ability to speak flees or does other things under stress and on and on the list goes.

Still I am me. Which means I protested something that I should not have but then I would not be me. I was very much on top of her apology for the visually “developmentally delayed”  being in the literature.  If you question why she is apologizing and know the ideology that she is not matching well subjectively I am scary.

It’s not the first time someone with power of life or death – lets not be confused that hours are very much a matter of live or die – has said something so awful early on that my protest of it has played out badly.  I defended addicts as real people to the clinician of another program.  The decision to combine all intensive support likely broke a program that was effective but of the four teams this one had room because she signed off on all 40 people potentially living in a squat. Then there was a fire and as legal  competence is rare in their clients none of those people were able to choose on their own. Real people were the good people who got the place and despite 40 times 375 (housing allowance still at 1970 rates but hey ! ) which would have got perhaps an overnight person to patrol without denting the money much it was exactly this that real people like the owners or well if it was your decision they had their fall person.  Expected to make a sound decision for people deemed unable to she didn’t and people died or were hurt.  Not many but 1 is too many and the whole way of lowering their main client group to less than even real upset me.

It isn’t my issue but all people are real and it’s hard to know how many people work in human services who see the populations they serve not as people who need some help to get by whether that is legal and addiction related or autism and well the many things that don’t happen without help.

Eventually you lose hope. I was there as it had become a hard commute all the way to the bathroom or to get the dog out. One I had to rest fast or fall over from.  The effect of living off oatmeal and granola and trying to make it last as if you can’t make it 10 m without resting making it further where you have to cope with noise and sound and light…

It is not like science ever said if you ignore someone with autism their problems go away other than in the worst case scenario where they do indeed go away.

I don’t know for sure it was subjective versus objective disability that is a reason why I am stuck with 11 hours less than it took to serve me before. I’ve never officially had more than 5 and I was getting 16 hours because someone thought that was  a work around for my facilitator.

The hitch of course is if you need that many no one will take you on with 5 hours.  If you could harness the abilities you don’t have on those same objective skills and somehow got someone to interview  the list of things you need support with is impossible and they do not have to take you.

I am a fan of paradox most of the time but this kind of one where something is expected that is by definition not possible and it is government … hmm lack of oversight?  Attracting people who want pay and benefits more than to help people I do not know but finding anyone at CLBC that knows they ask the impossible and who are willing to view the whole she has ignored me for over two years now as an actual problem hasn’t been possible.

My landlord is raising the rent and my place was deemed an occupational health and safety hazard but despite the nightmare of dust filled insulation through which rats rained and electric boxes partially open to the rain  the truth is no one really cares.

Home nursing could think to forbid people from coming.  I think that was more from outdoors as there was smoke in the air again but the next step where a vulnerable human lives here is not thought.   I am simply left.

I had mentally begun to prepare to die as any way I wouldn’t seemed impossible. It is the season where being in between the birthday of my dog and his dogaversary I normally talk to him about this oddness of leaving his home and litter to form a pack because he is a dog. I point out stars names for dogs and constellations and other silly thing people who have a smart dog and rarely see anyone will do.

This year I cry a lot. Less now . I apologized that if I died he died seemed a hard thing to work around and as it got harder to breath and to move far without resting it was not that I am so disposable in a society that believes it has a social safety net it was that he should suffer too.

This entire time he was the only one anyone from CLBC was interested in with the whole he had to be abused nonsense.  Still the day would come where I would sob to my dog my sorrow not that he was abused but that grounds to take him existed.

Yesterday I saw the first human I knew since the Yom Kippur evening service.  She brought some groceries which she has done at times before but it had been a long time to see no one and that was good.

Of course there was the advantage of a better diet than what we were living on.  That helped my stamina a bit when I ate it. The dog spent a lot of time dreaming of chicken.

Still the thing that hasn’t made me hope as no one has been able to make a dent in CLBC  so far but which at least made me feel I wasn’t utterly alone some hard to name feeling from that lingers.

There’s a market across the street. Much of what it sells is beyond my price range but I do buy milk there as the price for a brand that does not use “Big Dairy” is comparable to regular stores.  There was an incident in July where 3 brands came under recall due to milk from the same source and while I never lived on a farm for longer than 2 months my teen years were spent in an area with little industry outside of tourist season and people clinging to farms. Some will always exist as people will lose money to put towards the farm that great-great- grandfather founded but dairy had made a temporary lifesaving measure then of becoming one coop. It was temporary but the image of all the things that go wrong with agriculture or other things like forestry that I care so much about have their routes in what I passed on the way to school.

Principles cost more per litre and I have heard the argument that being poor is a reason to not have them but it is the poor who are harmed when principles stop mattering to too many or the once not poor are made poor.

Principles are why I speak up when someone says something horrible and don’t pause to go “Hey your entire life is very much up to them so pretend you are oblivious’.  I mean I never hear my brain saying time out before I dive in in a way that will alienate and my words never get stuck when I am about to say something moral but of low utility to myself.

The days I lay with the dog far better at meeting his needs than my own I stopped feeling real.  It’s dangerous when all things social and in the community are hard to just not see anyone and not have any support to go do things.

For weeks I have wanted to go deal with something I once would have found intolerable. My tablet has issues.  Look for my rant about that one day or not.   My tablet is in the things I typically have with my whether I use it or  not.  It’s kind of a weird thing to take shopping as I don’t expect they can fix it where I am going and I got a good model last time which is too much now.

In my head I thought I would be able to go to where you can get some and well I do like that store. When the salesperson is busy I help people make better decisions about technology and I am always careful when the inevitable whisper comes about to get it there or a bigger retailer to point out the price matching rules.  It is always a long wait as it feels like someone is forever testing a 9 dollar stylus over a 14 dollar one.  Still it’s a wait among electronics. More comprehensible than people by far.

It’s close to a grocery store which I thought okay you get that far and buy that you might carry on although they do sell some forms of food where I planned to go.  In my mind I think I had realized official support was fading and I was and doing something like this would help.

Only not managing to break me in the gets stuck kind of way but  trying to get into bed for 6 days is a record and well medication and food for me just won’t happen. The weird bit looking back is the dog was taken out and then I somehow returned to some useless position.  I thought I need to stop but I can’t sit for long without pain and there is no where else .  Day after day. That my left leg was often hanging down made for pain when I tried to get it back in.

The fundamental problem with people actually understanding how additionally disabling this kind of long-term stress is for me is that if anyone was here to see I would do better.  It’s the many hours I hate to admit that went to something like that .  Better for others than the 3 day email but for my body it just stressed the broken bits.

There is little point in writing about the risks and happenings of this fairly invisible person if people only take away they are glad not to be me.

The person who came with a variety of food was a person who remembered I have needs and I exist and well her choice to show up with food was tangible proof  that I am not entirely alone.

I managed to get milk today as that is how support works.  You tell the dog  you think you might be able to make it across the street for milk while chicken and cucumbers and humus lines your surprised stomach.  That this was your best window in months.  This remembering that however disconnected the govt. employee is from my disabled reality someone cares.

I know there are people who care further away but they are inevitably so distressed by my reality that while it is one worthy of distress if they are someone who you see as in need of protection from some elements of it.  Like those who believe it’s easy to right a wrong that you know no one wants to fix, or family with health issues and those closest to those with the other health issues and that doesn’t leave anyone.

Love is sometimes having to say you prefer someone stay close to familiar specialists.  My non-facilitator shouldn’t get a two for one bonus on killing with neglect which given how nothing she has done or not done is an issue for anyone if someone shouldn’t be stressed the rock like person she is as far as her not really having a clue who I am and never having tried to find out is the kind of stress middle-aged relatives need to do with out.

The price is then being reliant on not strangers but the community here which the whole not being able to sit has made a dent in our being an active member so the number of people who routinely think of me is way down.

I drift in time without any thing to properly anchor it and can’t get used to the new schedules for services. I miss the simplicity of being sure there was one as Shabbat was a consistent deliverer of a window of relief from being me.  It still happens but a person who spent 6 days failing to get into bed might not be up to much for it.

I had trouble keeping Rosh Ha’shanah in my brain for long enough to act on it. A friend just thought I was skipping again.  That I take some days as not optional short of something dire has come up before. I am more traditional than most of my congregation but that right is part of the ideology of Reform .  I can be.

It is hard when you feel a govt. employee is killing you without even thinking of you much to not wonder how it comes to this.   To exist at all seems too miraculous and well death by govt. employee under achievement something one would work into a British Columbia themed Dungeons and Dragons.  Roll 6. Luck. Your confused govt. worker thinks he works for the Queens Printer and based on the stack of manuscripts he was napping on his underachieving won’t hurt you.  Roll 11…. Oh no. By qualifying for support you always needed your life may be forfeit.   Roll 18  Someone comes by with food that remind you will your life may still be in the hands of someone disinterested in helping you are not alone.  (Sure in the game it would be a rope or something but the one game I played to the end of DND was mostly about my bosom.  A female showing up for the games club did the Dungeon Master in….  )

If this is just a break from apologizing to the dog then it is still a break.  One does have to choose to be grateful even if thus far the immovable nature of my facilitator has been a constant.  It’s easier for the dog.  Foods that have a smell  thrilled him and while he licks the tears from my face he registers my distress but not that he is part of the worry.

I used to just worry that his life was blighted by my stress and sadness when the first 3 years of his life were so good.  I kind of miss that being the pressing reason I wished for something else for him..

Right now we have rallied a bit from all 4 food groups ( I don’t typically pull that off but we do usually manage okay on a diet where peanut butter is a staple )  My sister-in-law is a vegetableaholic so with my luck the cucumber will be contested but houmous is mostly made from one.

I could have gone to dinner and I spent 49 hours trying to reply  so 2 people remembered me I just am that hopeless and I feel like people would doubt that kind of thing even though I am honest as even to me it seems a weird torture when one task you can’t get out of bleeds into a new one.

That some protein and other foods and more importantly a person remembered I am out here and came, well for a few days things will not run smoothly.  Still today we did get milk bought and as across the street seems like a distance nebula many days we will take the miracles we do get.  I had begun to fear I was over my limit for a life.

The monster I enjoy being versus the randomly less than human by so many people I officially deal with.


The Monster I am not

My wonderful dog who on this day had as a pressing matter how too get the tv on. He snores and hogs the remote (well the tv doesn’t work in my room now so there dog… he has to hog Netflix instead)  qualities I thought I stayed single to avoid. In any case that was a better day when he did not have happy chicken dreams because life had been derailed for some time.

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Dog not dreaming of chicken because he is hogging the remote