On Black And White Thinking and Other Annoyances

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

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

Here are some things I am black and white about –

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

The group I call Voldemort Speaks needs to disband.

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

Honesty is the only policy.

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

Most people are smarter than the experts think.

Speech is not the sum total of all communication.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Well he's black and white some days.

Well he’s black and white some days.

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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

This is Autism

The flashblog theme for November 18th is This is Autism.  Part of a number of rebuttals to the vision of autism that the group I call Voldemort Speaks holds. They produced a fairly horrific video on the topic that most people will have seen as there would be no way I would direct people’s attention to it in any case.

 

The problem with the video isn’t even that challenges like those portrayed don’t occur with autism. They absolutely do. The problem is the unrelenting series of images that focus solely on the negative. When a person finished viewing the video they may feel like they are in shock which isn’t really what a group should be going for if they know that many of the parent’s of the newly diagnosed will have heard of them.

 

I can’t tell you what autism is. I know what my version of it is. I’ve met over a hundred people of all ages and across the so called functioning divide. Far more if you open that up to the internet and back when I thought studying the brain would help me work out the condition most people view as normal I did do a lot of courses that equip me to understand autism in the academic sense. Having worked out the academic sense is seldom useful when it comes to normal I would be a hypocrite if I listed those things as what autism is.

 

Autism is lots of things. I don’t have a financial stake in selling anyone on my particular viewpoints about autism.  One hopes that people would question any depiction of any group that was so universally negative as being contradictory to everything people should have picked up about what it means to live.

 

For my own autism I know that the bulk of the behaviours seen in that video do occur. I’m 45 years old and it’s not like the frustration and lack of power, or issues with having access to words when I most need them have faded enough in this particular version of autism for me not to recognize the behaviours.

That’s hardly the sum total of autism though. No life is lived at the extremes seen there. I have struggled with what to write for this flash blog because my own life has had a lot of grim moments in the past 22 months. It has had a lot inf the 43 years that came before those months too. To dwell entirely on those would be to rob me of my own forward momentum on this planet though.

 

My own autism includes both beating myself black and blue with my fists out of utter frustration and strolling across a stage to get my university degree.

 

Speech and all that goes with it is oddly a thing I have mastered far more than most people and which I will never view as a reliable skill set. I can read more languages than I have bothered to count and am reasonably good at 5 languages 7 if you give me the bonus points that go with one of those languages being very similar to two others. Lest someone say well that’s just a language obsession and nothing useful given I fail to speak when I need to often enough that 4 times so far this year people have wondered aloud no less, about my intelligence. Who knows how many people only thought the kind of horrible things they say if they think you are so far from present they don’t need to factor you in at all.

 

This confusion of the ability to speak and the one to think is one which I have devoted enough words to I think.  I don’t really fully understand why people hold that position as it is not an issue I was confused about at any point. Because I wasn’t confused more than a few of the variety of humans that get written off by everyone around them have done and even said remarkable things when I am around.

 

It’s a point of much frustration for me on more than one level because even if everything they say about me in those awkward moments when they make a leap they will soon wish they hadn’t were true it still wouldn’t be okay to treat me or anyone like that. Ever. 

 

So yeah I will concede that being autistic is frustrating but as that frustration is  a product of what autism is and the environment a lot of what is most frustrating about it would go away if the vast resources of time, money and information were devoted to that instead of making more money to further dehumanize autistics.

 

There are only a few things I know for sure about everyone’s autism and those things are part of the very definition of it so why some confusion exists about them I don’t really understand.

 

Autism is pervasive and neurological. There is no separating out autism from an autistic person because not only were they born that way but it impacts the brain. Every experience they have will go running through a brain that is not typical. These not typical experiences run through a not typical brain will shape the person just like experience helps shape experience. 

 

It’s honestly hard to know what impact having to defend my very right to exist more often than any human should have to while do to the person I am becoming. That’s an autistic reality that should make everyone indignant but oddly enough it doesn’t. I am not willing to chalk up my deviation from what appears to be the majority view in North America to some deficit on my part because I have seen other countries take refreshingly different approaches to how they depict autism. Ones a lot closer to my autistic reality on the whole.

 

I don’t fully subscribe to social models of disability as they have some holes you can drive a truck through but that society can make being any type of human harder is pretty obvious. We live in an age where sign language counts as a language credit in university but also an age where people routinely rob autistic people of other output methods as a matter of course. Sometimes they don’t think the person is capable of using them, sometimes they think well they have some speech or even all speech why do they need them? To that I say why not. For me some built in redundancy is good now since typing will always be easier than speaking. Speech is not the holy grail. Providing other methods of communication seems like people should view it as an of course not one to debate the merits of.

 

Autism technically consists of specific differences in key areas. Since no version of the DSM has managed to cough up a definition that didn’t at some point veer out into total pulling it out of their posteriors. A deficit model of a disability is almost as bad as a catastrophe model. So seeing a few things repeatedly referred to as deficit as well as the conflation of play and imagination again I give up for a version of the DSM that is barely 6 months old.

 

That’s autism. I exist in a state of often being quite annoyed by what countless experts laboured for years to hammer out as far as autism goes. But the DSM is a manual that doesn’t enjoy much use outside of North America so it’s not surprising given the grim narrative about autism groups like Voldemort speaks sing that no one gave much thought to wording issues, or the incredibly bad science behind linking atypical play behaviour with a limited imagination.

 

That one bugs me so much I thought of doing my dissertation on it years ago. The reality is it would be a hard sell. I had those stereotypical of autism type play “deficits”. For me my toys were props so I would think at them. They did not need to move for me to be entertained for those hours I spent not playing with them. To me that seems like a surplus of imagination for my development age. I loved to stack and to “ritualistically” move things around. So what?

 

I’ve discussed the imagination issue with my only friend equipped to be sufficiently informed about matters psychological and we do agree that there is an issue with imagination. Neither of us are illogical enough link play and imagination though. I don’t know if the scientists who do went to really bad schools but to do so does take quite a leap.

 

I suppose Voldemort Speaks might take some cheer that they are not the only ones getting autistic people irate or making huge leaps. The truth is even for those of us with autism saying what it is can be a too daunting task. Knowing the harm that a huge generalization in any direction or the other can do I wouldn’t actually want anyone to form their opinion of autism based on me or what I have to say.

 

Ideally an approach to the question could work from the extremes. Somewhere between the horrible, negative only scenario used by Voldemort Speaks and the glowing and all positive version there exists the bulk of autism.

 

Anyone who knows me knows I am not a person who believes thinking positive is always the best way to go.  I see enough comments on blogs, and lists that suggest a lot of the parent population lives in fear of false hope. For some reason false doom and gloom is okay but I do actually understand that mindset. Beyond my autism my health just plain sucks. I totally get how it can be helpful to be mentally prepared for the worst case scenario from the medical bits of my life. That being said you can’t live your life from that position.

 

The whole point of getting a definition of what it is something is and how it is likely to impact you would be to inform action. To enable you to live with those things. You don’t live hunkered down in a statistical minefield of the worst moments of being autistic lived large, anymore than you live with a arthritis that seems determined to steal your mobility. There I personified one of my other a disorders. Being an over-achiever in the field of acquiring disorders I have 5 that start with a currently and 4 pretty well permanently.

 

I know that there is a time for some disorders that are less fundamental to who I am, to view it as a destructive force. At the same time even for arthritis it has it’s benefits. Right now the only ones I can think of is that being obviously physically disabled helps a lot with getting a seat on the bus and that my old age should be awesome as it will be the one time in my life where people won’t think I am grumpy. I figure that being well used to canes and walkers and wheelchairs and various other things that are not so fun in your 20s or 40s I will be the calmest person in the old folks home. 

 

Of course probably I won’t. Old-people’s homes seem much better at catering to the “ravages of time” than autism. Pretty well any institution environment is not likely to leave me calm so it’s a pity I didn’t manage to have kids. On the other hand I have more practice resisting getting shipped off than most so maybe it will not come to that.

 

I don’t do short. I can’t even do witty when it comes to saying what autism is because I do know that is something everyone has to decide themselves While the things that make doctors go aha aha and afix the label to a person mainly mean there is a lot of overlap in those pesky symptoms of autism but each autistic person has their own life and story.

 

Life is not a straight forward or easy journey for anyone I don’t think. Our hope in even trying to participate in a This is Autism is mainly to counter things that make that journey harder. However effective a catastrophe narrative of disability might seem for find-raising, it is no way to live a life. Or view a life.

 

This very moment in my autistic life is mainly occupied with trying to type while my dog tries to lick my ear to a scary depth. You won’t see that in a This is Autism video by Voldemort speaks. We all get one life. When that life has a label, even when that label forms fundamentals about you it still can’t be reduced to the label let alone redacted to just the negatives. The same brain that creates some of the variations of havoc in the catastrophe narrative also creates much more.

 

I am by disposition a realist. People sometimes tell me I am thinking negatively but I seldom am. I also pretty well cannot say something unless I know it on some pretty deep level to be as true as possible which creates issues with a group template like this but which means if I did not think Voldemort Speaks was horrifically wrong about autism I would have to say as much. I have conceded where they are right. I know there is little point in my hoping they will do the same for the autistic community and say they are sorry. Sorry for defining the message when they didn’t have a clue and sorry for the great harm that has come from that. If they were capable of learning from me (which since I have been bugging them since they were founded I think I know they are not) they would stop trying to define autism by their own weirdly warped view. They would take a deep breath and even in the worst moments of life think about the things that are good. They would cease this perverse need to monopolize the view of what autism is and relax and celebrate the things that are good in their life. When that intersects with an autistic individual maybe they will find having put down their special glasses of doom and gloom they can see a person and not an epidemic to stop or a crisis. If they could stop for long enough to view that autistic person that caused them to start caring so passionately they might recognize the intersection of their organizational traits with those of autism. They’ve manged to have a communication disorder so severe they drown out all other narratives and a compulsion to carry on doing so despite the obvious lack of social skills.. In the field of black and white thinking they could use that video as an example. I could go on and on but since they sicken me on a real physiological level I won’t. I don’t want their to be such nice overlap nor do I want to seem flip about some of the real challenges that go with autism. To carry on risks losing the contents of my stomach and offending some people neither of which were my goal.

 

So Voldemort Speaks stop talking. You are talking your way straight into reduced profits by the looks of the people who up until this very week supported you. (Not me of course. I have had a healthy loathing for you all along)  Autism is a lot of things including the things from your video but that’s hardly all it is is it? I’ve always given the humans who founded it enough moral credit to think they must suspect they’ve goofed in their view point but think that deviation from the message would be harmful to the “good” they can do so to the much maligned Ms. Wright, I would say if that’s the view that keeps you preaching harmful and toxic points you can stop. Spend more time with that grandson posed awkwardly in some promotional shots. I believe on some level you meant well but that level has been eclipsed. Stop and learn and if you never utter another word we won’t question your intelligence or seek to rid the world of your human self.  We know what’s that like and although some experts say as a population we are devoid of empathy if often feels like the opposite is true. I can have empathy, actual empathy to the point my physiology recognizes it and doesn’t like it much, when I think what it must be like to be you. I know you have not given much thought to what it is like to be me but you have only captured a tiny subsection of all of that.

 

I don’t like attacking anything even though posts that do get more hits. I really don’t like attacking people or pretending I have a clue what life might be like for them. So since I never have attacked your personhood and admit the above is the product entirely of my mind could you not do so for autism?  I am getting kind of tired of a large fraction of what autism is being typing this kind of post. I would rather go back to other pursuits even if it meant no one ever came here again.

 

This is my autism.

 

 

 

 

 

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.