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.

nsbeach 2514x1603

 

Advertisements

Invisible Lives

Pardon the poetry but some months are so awful nothing else will work. It has been decades since one would mistake me for a poet but the most raw subjects will not be formed into sentences with ease.

 

Invisible people leading terrified lives
Unheard as well as the words we summon are taken as other
When words will not come dismissed as having issues
When they come slowly they are again issues.
It is a terrifying thing to walk among those judged as people
To depend upon them and know that you are in fact a hostage
They can and have hurt you.
They will again

A word sends you flying blinded by all but the desire to get away
Words you were taught do not hurt. They do.
You do not have to fall down a case of stairs because of this blind panic
The panic that comes from being seen as less worthy of anything useful
The fleeing to most confirms that.
If you could speak easily you would spit out the relevant research
No one actually cares that if a word you have heard often sends you so fast
You are in fact already hurting more of the time than not
Dismissed again with less than a proper exam as you are not worthy
Not of the care those unlike you get
Not of concern that your constantly over—aroused state needs looking into it

It is, after all for those who understand brains a sign that calm has too long eluded you
Brains are your area but they who can sneer the words of dehumanizing would not think this
You will be dropped off
Without proper care, lie in pain and terrified
Wonder what it would be to be an actual person
Perhaps just as bad you think as that seems a process of trading truth for something else

Those that do it control your care though
You want someone to know but have never been able to call strangers
Your request is refused, you point out the dubious legality of this
They decamp to the truck to follow the edict that nothing you want done will be.
A hostage of disability or the smug feeling that you are others too control and spin.
Wrong has been done but if they can get the their version out first …

No one comes of course.
This feels like re-run
To make it worse levels of how little you count have kicked in
Fired by your pharmacy you try to create enough of a balance of things so that this is not fatal
Invisible lives so unworthy that the potential for death a fairly clear ethical line
Need not apply to you

Devalued lives, unvoiced fears, where is my voice?
Tears are shed into the dog.
Accustomed to licking them from the face he performs the service again.
Choke out a few words for him on how sorry I am that he is stuck with me
He could have a happy human.
One viewed as a full person with the rights of others
Then again they might consider him their owner and likely have others to help when tears flow
The sensation of panic will not go away on its own and looking at the medication left
The worried math of evoked potentials
The work that should have been done by he who felt he could indeed deny something vital over profits.
I have for years sent back the form he demands I fill out.
So sudden action seems cruel as I am used to kindness in a pharmacist
In the former owner as well
Red faces and stabbing the air he has spit out he is both
The new owner and a pharmacist this enraged bully confronting me at the door
Of what passes for my home.
The stress and fear apparently not his concern other than in theory they are
That I may not be able to cope with any of the ways too work around this firing
should probably concern him but why would they?
Many professionals have ethics but they apply not to the likes of one such as me
The death sentences fly in

Society trends in a direction so horrific that this is one of many similar incidents
The worried math of how to prevent death is my concern
Another gash in any facade that I am a person
The progress through which you become a non-person is ongoing
You sometimes forget.
Sometimes in the brief joy of being among people who see you as you
You are lulled into thinking this is a view that might catch on
In the days that follow you will reflect on how often you have made this mistake
Chiding yourself for blaming yourself for the natural desire to lean into a better identity
To believe others may not be blind whatever caused the quick dismissal
You are wrong though.

Asking for a phone call to be made you are refused
Autism is something you feel like blaming for this form of hostage keeping
That would hardly be fair though
As society has in theory provided support based on what you cannot do
Then never really monitored if they comply
So now they too are terrifying as one cannot be supported by those who will cage you
Who are alarmed that the agency who has every right to know and thus they will not.

Invisible, unheard, damaged and scared
Not by the neurology that allows so many to discard you
By the many who have to view you as less than to get on with …
I have no real clue what drives this desire that some must be so much less than
It is common but it’s utility is lost on me

Invisible, unheard, hurt and terrified.
Sobs hit keening levels but no one will ever hear or come
This is not a reality with a place for the likes of you
You are paying the full cost of having forgotten ever that this was the case
Rocking as the dog likes the salt from your face you croak out Bill-C-24
The dog no more like other dogs than you like people wages his tail
If you had croaked out good-boy he would have barely noticed

Days go on
The dog not afraid of course as you are a reality he is used to
The fear escalates and escalates
The math of thresholds and evoked potentials has you hoping most of the risk has passed
So too has anything that might help with the terror

On the day I was born a party was held
I wonder why as the 49 years that followed do not support it as joyous event.

 

Digital StillCameraPurk

 

Autism is Not a Game

Some things are not funny or games. One would think that would be obvious but if you are of Facebook that breast cancer is made into a funny game you may have seen for as long as you have been there. It’s not a game I will play and when I politely suggest all sorts of more useful things people could do after explaining why some unfriend. I do not miss them.

Now there is one for autism.

Autism awareness should start with the awareness of what being autistic means for those of us who are. Like the breast cancer “game” it should not exist. Call that black and white thinking if you must but some things are black and white.

Autism is demonized by others to support their agenda about it. If you are autistic odds are you will be bullied, underemployed, exploited, made fun of and so much more. I wish the odds of actual acceptance ran as high.

Autism is said to be an epidemic and those heck bent on that view then go on if they see vaccination as the culprit to unleash real ones. The message to autistics is clear. Death is better than autism and science is not worth regarding as superior too fear.

The murder of autistics is so out of control in the US that while the international autistic community mourns our dead for they are our dead the question of when will we not know the names of all of the dead is there. Likely some die having lived lives so invisible we do do not mourn them with the other dead.

Sentences as murder is so rare. I am not quite sure how two women stab an autistic multiple times and somehow justice is compassionate when that is some ridiculous degree of manslaughter and time served is the sentence. Compassionate to those who are not autistic I guess is what matters. Calling that justice is in itself an injustice.

In Canada, where I live I often feel like I am simply being killed more slowly by intensive neglect. In theory I finally have support that is based on my autism. I thought this a miracle of sorts initially and sure it would end a lot of things as being too intelligent to qualify for adult services is silly as for a lot of my life a few hours support around the things I could not do would have ensured I had the right amount of degrees for my dreams and was a taxpayer and all sorts of good things.

It’s been over 5 years since having to move from my home of 14 years turned my life upside down. I had gone a long stretch of time without needing service from the mental health system or at least fearing that it was so often more of an invitation to abuse than service with solutions so unlikely why bother?

Now that it is sadistic I wince when an entire day is devoted to mental health or I see a commercial which has the facts right on things like depression in Canada but it tells you to get help. If you live in my health authority not thinking that help is what will happen could save your life. At least it would prevent ptsd or complex trauma depending on how often you have been harmed seeking help or abused as a form of help.

It shouldn’t be that way much like autism should not be a game to anyone. This is the kind of world we live in though. If it isn’t a meme or a game it is just too long or boring or sad.

By April I will have a better 30 item list for actual awareness and no one will play that as a game as there is nothing funny about a lifetime of being autistic being a reason to harm you in some way or the consequences of living the autistic life.

Given number one in the game that should not exist is “I just found a squirrel in my car.” How is this awareness or education. I mean sure I don’t like surprises but it doesn’t really indicate how chaotic something unexpected is for the autistic. Although unexpected animals are a stronger suit for me and if I had ever found one in my car ( I don’t own one and never have so that too would be a surprise.) I would have worked out how it got in there.

The fundamental problem about autism education is very little of it is done by autistics. I don’t understand what it is like to be not autistic so why is that exactly? I have some ideas having watched people recoil from truth, literally run from science at an autism conference although it was more of a stampede, and oh people are always explaining my reality to me.

The thing about me is I don’t lie and I don’t use hyperbole for effect. I will do both in fiction of course as the whole thing is made up and hyperbole is okay. Having people doubt what I say about something distressing compounds the distress and makes every other time others have overwritten my reality come back.

Autism is a disability. How people respond to autistics or speak or write about autism is so often so inappropriate that the stress from that alone makes me less able.

That’s the other frustrating bit. People are often blinded by my autism to the abilities I do have or flat out refuse to believe I have any or the opposite doubt I have autism because I can and have done certain things.

That doesn’t happen with many disabilities. People notice my physical disability first now and for the fast interactions of some of life the way that alters their behaviour is while not surprising very unfair. I wasn’t born needing a walker and using one didn’t thus impact everything else.

The closest thing to like a game is how often the origin story of the older autistic is like a super-hero. Many of them are after all not from Earth. Still if you actually were born on this planet to human parents the degree of effort getting to the point where you understand what is going on enough at any given time is considerable and new situations may come with assumptions you can adapt as to someone else it seems not that different.

There are times I hate the bonus difficulty levels of being autistic. Times I confuse that with preferring not to be but that non-autistic me has never existed and never will. I know there are skills I have directly as a result of autism. I use them in ways which by now I should know are not that surprising but seeing the beneficial outcome always surprises me and maybe that is good.

The surprise after all is because I don’t expect all people to be the same and so when something I know about due to autism helps someone and I am surprised it means I have that part down. I think maybe more people need to do some work there.

Having autism has times of joy. When distressed over a year ago a boy who’s sense of being alone in a puzzling world I had made him feel less alone so that one day it would of course he would have the solution to my distress. I felt some pride as he made himself look taller and addressed issues of if I should even follow him to a “sparkly, glowing, spider web”. I didn’t raise them but I use a walker had lost weight and the path was slippery well two came up and the weight was the collective desire I prioritize eating. He knew eating and music as the band was about to leave were not the cure I needed.
We sat and he asked if other people could see how amazing it was as no one had even slowed down before. I am forever in educational mode so the prisms of water the web and rain had caused I explained would mean that the lights strung all along would produce an effect nearly everyone could see if they had slowed down and looked at it from the right angle. Other things as individual and thus we were very lucky as the sparkly, glowing beauty as something we could both enjoy was something I had needed.

We rested for some time from the communal chaos. He also enjoys enjoys games but life is often lonely when your needs are not standard and how you see things be it literal or less so is also not typical they have not made a game that quite captures this wonder.

That would be a game worth playing. If one could capture the lonely confusion of early autistic life that will repeat even if more knowledge means some things are not confusing but lonely and different even when with people who accept your differences that you will inevitably do or say something that for a time makes that highlighted well the quest in a proper game about life as different might be for rewards like that.

It’s still January and the dread autism awareness month is April so consider this advanced education about why autism games may indeed be possible but they would be hard and not that fun,, at times sad, often lonely with minutes of intense wonder to revel in with someone also walking a lonely path. In game terms we call all the boring things in between a reward “grind”. In autistic terms I wish boring was all that came between the sweetest and most wonderful times.

Don’t play this stupid game please. Or play it and if you have autistic friends don’t be shocked when they decide the prize of friendship with you is just too high.

Our life is hard yet autism is not a tragedy. The willingness for people to aim for easy that this game so represents or popular which reading best-sellers by the non-autistic represents as few of us are easy or popular so aiming just a bit higher is a start.

Some things are not funny or games. One would think that would be obvious but if you are of Facebook that breast cancer is made into a funny game you may have seen for as long as you have been there. It’s not a game I will play and when I politely suggest all sorts of more useful things people could do after explaining why some unfriend. I do not miss them.

Now there is one for autism.

Autism awareness should start with the awareness of what being autistic means for those of us who are. Like the breast cancer “game” it should not exist. Call that black and white thinking if you must but some things are black and white.

Autism is demonized by others to support their agenda about it. If you are autistic odds are you will be bullied, underemployed, exploited, made fun of and so much more. I wish the odds of actual acceptance ran as high.

Autism is said to be an epidemic and those heck bent on that view then go on if they see vaccination as the culprit to unleash real ones. The message to autistics is clear. Death is better than autism and science is not worth regarding as superior too fear.

The murder of autistics is so out of control in the US that while the international autistic community mourns our dead for they are our dead the question of when will we not know the names of all of the dead is there. Likely some die having lived lives so invisible we do do not mourn them with the other dead.

Sentences as murder is so rare. I am not quite sure how two women stab an autistic multiple times and somehow justice is compassionate when that is some ridiculous degree of manslaughter and time served is the sentence. Compassionate to those who are not autistic I guess is what matters. Calling that justice is in itself an injustice.

In Canada, where I live I often feel like I am simply being killed more slowly by intensive neglect. In theory I finally have support that is based on my autism. I thought this a miracle of sorts initially and sure it would end a lot of things as being too intelligent to qualify for adult services is silly as for a lot of my life a few hours support around the things I could not do would have ensured I had the right amount of degrees for my dreams and was a taxpayer and all sorts of good things.

It’s been over 5 years since having to move from my home of 14 years turned my life upside down. I had gone a long stretch of time without needing service from the mental health system or at least fearing that it was so often more of an invitation to abuse than service with solutions so unlikely why bother?

Now that it is sadistic I wince when an entire day is devoted to mental health or I see a commercial which has the facts right on things like depression in Canada but it tells you to get help. If you live in my health authority not thinking that help is what will happen could save your life. At least it would prevent ptsd or complex trauma depending on how often you have been harmed seeking help or abused as a form of help.

It shouldn’t be that way much like autism should not be a game to anyone. This is the kind of world we live in though. If it isn’t a meme or a game it is just too long or boring or sad.

By April I will have a better 30 item list for actual awareness and no one will play that as a game as there is nothing funny about a lifetime of being autistic being a reason to harm you in some way or the consequences of living the autistic life.

Given number one in the game that should not exist is “I just found a squirrel in my car.” How is this awareness or education. I mean sure I don’t like surprises but it doesn’t really indicate how chaotic something unexpected is for the autistic. Although unexpected animals are a stronger suit for me and if I had ever found one in my car ( I don’t own one and never have so that too would be a surprise.) I would have worked out how it got in there.

The fundamental problem about autism education is very little of it is done by autistics. I don’t understand what it is like to be not autistic so why is that exactly? I have some ideas having watched people recoil from truth, literally run from science at an autism conference although it was more of a stampede, and oh people are always explaining my reality to me.

The thing about me is I don’t lie and I don’t use hyperbole for effect. I will do both in fiction of course as the whole thing is made up and hyperbole is okay. Having people doubt what I say about something distressing compounds the distress and makes every other time others have overwritten my reality come back.

Autism is a disability. How people respond to autistics or speak or write about autism is so often so inappropriate that the stress from that alone makes me less able.

That’s the other frustrating bit. People are often blinded by my autism to the abilities I do have or flat out refuse to believe I have any or the opposite doubt I have autism because I can and have done certain things.

That doesn’t happen with many disabilities. People notice my physical disability first now and for the fast interactions of some of life the way that alters their behaviour is while not surprising very unfair. I wasn’t born needing a walker and using one didn’t thus impact everything else.

The closest thing to like a game is how often the origin story of the older autistic is like a super-hero. Many of them are after all not from Earth. Still if you actually were born on this planet to human parents the degree of effort getting to the point where you understand what is going on enough at any given time is considerable and new situations may come with assumptions you can adapt as to someone else it seems not that different.

There are times I hate the bonus difficulty levels of being autistic. Times I confuse that with preferring not to be but that non-autistic me has never existed and never will. I know there are skills I have directly as a result of autism. I use them in ways which by now I should know are not that surprising but seeing the beneficial outcome always surprises me and maybe that is good.

The surprise after all is because I don’t expect all people to be the same and so when something I know about due to autism helps someone and I am surprised it means I have that part down. I think maybe more people need to do some work there.

Having autism has times of joy. When distressed over a year ago a boy who’s sense of being alone in a puzzling world I had made him feel less alone so that one day it would of course he would have the solution to my distress. I felt some pride as he made himself look taller and addressed issues of if I should even follow him to a “sparkly, glowing, spider web”. I didn’t raise them but I use a walker had lost weight and the path was slippery well two came up and the weight was the collective desire I prioritize eating. He knew eating and music as the band was about to leave were not the cure I needed.
We sat and he asked if other people could see how amazing it was as no one had even slowed down before. I am forever in educational mode so the prisms of water the web and rain had caused I explained would mean that the lights strung all along would produce an effect nearly everyone could see if they had slowed down and looked at it from the right angle. Other things as individual and thus we were very lucky as the sparkly, glowing beauty as something we could both enjoy was something I had needed.

We rested for some time from the communal chaos. He also enjoys enjoys games but life is often lonely when your needs are not standard and how you see things be it literal or less so is also not typical they have not made a game that quite captures this wonder.

That would be a game worth playing. If one could capture the lonely confusion of early autistic life that will repeat even if more knowledge means some things are not confusing but lonely and different even when with people who accept your differences that you will inevitably do or say something that for a time makes that highlighted well the quest in a proper game about life as different might be for rewards like that.

It’s still January and the dread autism awareness month is April so consider this advanced education about why autism games may indeed be possible but they would be hard and not that fun,, at times sad, often lonely with minutes of intense wonder to revel in with someone also walking a lonely path. In game terms we call all the boring things in between a reward “grind”. In autistic terms I wish boring was all that came between the sweetest and most wonderful times.

Don’t play this stupid game please. Or play it and if you have autistic friends don’t be shocked when they decide the prize of friendship with you is just too high.

Our life is hard yet autism is not a tragedy. The willingness for people to aim for easy that this game so represents or popular which reading best-sellers by the non-autistic represents as few of us are easy or popular so aiming just a bit higher is a start.

Paralyzing Fear meets Medical Need

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Shabbat Shalom.

Implosion – Or the Benefits of Being a Mound.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Skating all over the Spectrum.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Shattered Hopes

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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