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 ? 

















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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.

K.Brink
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.