Dear Dad

My father passed away almost three years ago.  Unlike my mother what to say was difficult.  What to meditate on in advance.

As I sat contemplating this as I felt I had failed him somehow as throwing him in as part of an other issue would not do it. I thought as I ate near where I would go to observe his second yartzeit ( the anniversary of his death ) a lot about the contradictions in him.. He never said he loved me. Not once.  He in theory did not believe in love and I had thought for a long time that to respect his belief system I should not love him but he was my father. Love was inevitable  when I set that aside.

I wrote this before that service as my status on Facebook:

Dear Dad,

Two years and I miss you still. You were not an easy father but it was you who told me the most about what it was to be me. You taught me things when some might have wondered why. Those dark starlit nights when for a man who said there was no such thing as beauty you sat transfixed by the night sky.

You said love, beauty and G-d were for others. Those not intelligent enough to endure this world without them. I tried to respect your belief system although I was your genetic challenge who in my teens you threw a book across the room and asked if I could not see I had surpassed you.

You never seemed to realize the grim realities which could have come to pass if you were not stubborn on my behalf early on. Or maybe you did and that was part of your anger. I will never know.

In the end you were proud I had reclaimed a heritage I always suspected scared you. Your drive to convince me on all three points seems now an extreme version of protecting me. Beauty can be transient, love may fade or fail to take root, and well G-d, the hardest one to convince me was for others, can seem absent when it is hard to understand why. Free will as a gift given the nature of humans can seem small comfort.

You joked a lot when we visited the last winter of Mom’s life. Calling me rabbi so often I said keep it up and I would become one before I had a doctorate. Your confidence unshaken by my small life you asked,”Why not both? ”

You held me briefly as I came in from my nightly visit with James and said “Out of everyone only you had the courage to be a Jew.” You said it fiercely but Far you never managed to convince me for long on any part of your beliefs. So I knew this was pride and love however hard you made your voice.

So I do love you. I look at pictures and wonder how you convinced yourself it was not real. Broken so completely when Mom died that to live without having loved may be easier. I don’t know.

One of the last conversations we had you seemed about to cry over religions so beautiful you had seen in Malaysia that may have died. I said it could be they were worshiping outdoors and belong to one of the many religions going strong. Again with confidence I do not have you said you had books from then not all of which you were sure of the language of but I could work it out.

Being your daughter was often hard in ways it did not need to be. All the same you were the best father for me. I love you and tonight I will praise the G-d you could not bring yourself to believe in , in your memory. For two years that you fit no meditation I could find drove me to epic levels of writer’s block.

I suppose this is it then. I love you and I will miss you always because this planet is indeed a lonely place without you.


 

Why now and not when it has been three years?

I was at the beach yesterday and I thought of my father. Not that he was a beach goer but the year he got a metal detector for his birthday my mother needed to stay out of the sun for another week.   She gave him instructions on how much I needed to swim but she thought I would be fine with going to the other lake nearby  for the sake of our joint treasure hunting.

We found very little but we faithfully recorded those finds. ( See photo of a huge treasure day above)

It had been a long time since I had done an activity with my father. As a young child we used to go to a river to picnic and fish. The whole I never caught one makes me wonder if they even had fish .

My father would die without ever saying he loved me.  I do know he did even if the words never hit his lips.

However hard he made some part of life there is so little point to hanging onto that part of things.  Those hardships we did not have too have and well a long list of other things.

Those distant treasure hunts now seem a treasure in themselves.  As one who struggled with the concept of love  but did work it out the many reasons why my father may have never gotten fully there are clear enough.

Yet in so many pictures he seems happy with me.  The years that would follow that summer were more sickness focused although my mother and I would swim her final summer as always I felt sure it was indeed the final time.

I face several medical challenges and despite my parents not usually having much to do with those  they come to mind.

I do not grieve some idealized version of the parents I never had. It is the flawed but sometimes surprising parents of my reality I miss.  There was a time I thought that would never be the case but even if it took two years to know what to say in lieu of a mediation before prayer and longer still to complete the task as far as it really did seem wrong to just carry on blogging without at least trying to be fair. It is not the intense writing of  a fresh loss but my father is a hard man to nail down with words.

When I was young enough others might have doubts he said one starlit night that I would be lonely due to being so smart.   He died believing I had the capability to do more.  Maybe and maybe not.  But this unshaken faith that the finish line to some lofty goal could be reached  is a gift I think .   I have heard parents say much the opposite. Parents who perhaps seem more typical in so many ways so I know this acknowledgement of a pride in doing what he could not as far as live as a Jew, was real as was his belief I could still get a doctorate and become a rabbi.

When I was in cadets for some reason the thought that he was one became stuck in the Regimental Chaplain’s brain and several others would also call him that.

My father had had to leave school very early on due to the Second World War and he always wanted more learning.  This part of a heritage that he had feared was one he did stress as he saw that as a positive part of it. The rest of course given the course of his childhood were difficult for him.  Then thinking it safe here, the year I was 12, he had a horrible incident on the US border at a remote crossing.

Paged after a parade I was in with cadets to see the parade marshal . I did and it said to go to my aunt and uncle’s house. It was close and I went there.  My father was shaking.  My aunt suggested I go and find my cousin but he wanted me there to see and to hear what had happened.

Many years later when I would be a victim of a hate crime which initially seemed random but I was the only one to think that in a country which for no logical reason seems like the scariest place for it to happen he would apologize for the facial features that were his.

He  had said as one can add to the rules of survival when he was traumatized that I should only cross the border with very Canadian people. Thus I have crossed all of once by land.  That is how such rules work.  There were a lot of them he had taught me before but ultimately the inherent logic is you are alive due to them .

People are products of not just genes but experience and there were experiences if I could I would have wished changed for my father but they may have been what made him such a staunch advocate and ultimately a proud father that I had finally gotten the task done.

I will never know what I love you would have sounded like from his mouth but I do know what pride, confidence , worry , and so on sounded like. As I said it is a topic I struggled with and perhaps lacking a reason to work out if what he was feeling might bee love he never did quite get there in words. In deeds though and in other words he did indeed.

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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.

 

 

 

 

 

Since Everyone is Posting About Voldemort Speaks

What follows is a comment I made on a blog. In my usual way I got to the end and then thought hmm that’s long enough to be a blog post so for once I am going to actually post what I said. I apologize to regular readers as it is repetitive of things I have said here in the past. My opinion of this group has not altered much since their founding.

I didn’t want to ignore what went on today as far as either their attempt to further monopolize the debate or on a much happier note my autistic peers rallying to oppose them. Perhaps if Voldemort Speaks didn’t so totally dismiss autistics they might have wondered about the wisdom of meeting the night after the Autistic Self Advocacy Networks gala. They were concerned enough to bring it the DC chief of police the night before but he thankfully was not one who shared a vision of what is in the US a constitutional right of freedom and assembly being violated.

20 years ago I hoped that the internet would improve the whole experience of autism for the next generation of autistics. It has. My own ambitions for it back then were small. I hoped it would be less lonely, that people would know the joy of being with like minded people and so on. That a protest could be put together pretty fast and celebrated the world over was not even on my wish list. A huge thank you to those who spent precious energy and coping skills to put it together, to anticipate obstacles, and to be there.

Thanks also to every parent ally who cheered not only the protestors on but many autistic voices out there.

So on to my comment I guess. I could have written something fresh but my comment was more than long enough. I suppose I seldom make brief ones.:

My own experiences with my own autism have been no picnic. I don’t really believe in high and low functioning because depending when in my life people were deciding that I have been all over the place and I know I am not alone in that. Things looked bleak for quite awhile then better then bleak and repeat.

I don’t question for a moment the anguish my own mother felt throughout my lifespan. That would have been the case though if I were typical as well. The only real difference is since I wasn’t there were no shortage of people painting out my life in broad brush strokes. No one would have tried that for my siblings.

I had a lot of trouble actually accepting my autism since it was until my arthritis got worse pretty well the only thing I couldn’t just triumph over by sheer force of will. I thought of it in pretty much those terms for way too long. Even when I went with the Star Trek model of being like Data it was unhealthy as  didn’t have some of Data’s options including being in a mostly utopian environment where everyone but Data isn’t all that bothered by the fact he is an android. I thought my programming too would be outgrown. It’s embarrassing to say but I carried on thinking that despite a degree in psych from the university rated as Canada’s best and a solid understanding of autism as it didn’t pertain to me. I don’t know why I did. I had enough knowledge to question only the notion that it could be cured. I knew that for anything labelled as pervasive seated in the brain there simply is no such, meaningful thing.

So even at my own most self-loathing I did know that the notion of loving the child but not the autism was pure bull tweet and no good  would come of any approach where people cling to that. I recall so well hearing things said I should never have heard because people dismissed me. Of course that trend persists even now as my stress related loss of speech shows me over and over how much people confuse possessing the ability with intelligence.

Things have been harder than I would like for almost two years straight now. Hard enough to have me in tears of frustration. Hard enough for the issue of whether I should be in a home again to come up but does someone get to pretty well state I am somehow equal to a natural disaster because I cost a lot? No.

For 24 years I was reminded in my work about how often the default narrative seems to be to describe any child in terms of what they cannot do. When the child has a disability there is an alarming tendency for someone, usually a well payed someone, to make what amount to total guesses about what this kid will ever do.

Voldemort Speaks (not going to depart from my long held tradition of not giving them free publicity) has a monetary interest in painting the bleakest possible view. They’ve used every tactic they can think of too exclude actual autistic voices from that the picture they are painting. In recent years they have taken to buying autistics they seem to view as tame enough to say what they want them to say but even that is not working for them.

If there is a need for centralized fundraising then why not do it in a manner that is respectful and doesn’t question any humans right to exist? Why not do it in ways that are actually educational? Right now they are the number one source of bleakness. I have seen my parent friends in tears often enough from sheer exhaustion to know more doom is not needed.

I had a herculean task yesterday. That task was simply tolerating noise and lights long enough to buy four items so I didn’t starve to death before Friday. Sadly that’s not at all hyperbolic. More services are absolutely needed. Treatment is not something I oppose as long as no one is confused about what needs treating. Respite I am 100 percent behind. It would be a sad state of affairs though if we had to subscribe to the Voldemort Speaks vision to get anything. Oh wait since these sort of direct services are still neither a priority nor a huge budget line item even if we totally buy it in every way we don’t have much to gain and our collective humanity to lose.

The Myth of Recovery,

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Quiet No More

It has been pretty silent here. In the past month I have attempted a few posts that wound up not being something I felt I could put up for one reason or the other.

On the first of May I went into hospital. I was depressed for one thing and my doctor wanted some tests one to try to qualify me for the ever elusive services so we would not continue on the wheel we had been on of function worse services increase, first sign of improvement services decrease, x amount of time passes no appropriate services at all ad then repeat.

He thought it would be a few weeks. Since they can’t actually treat my depression I don’t think he expected to try too hard on that but they ran a lot of test and scans while they were at it and I was a total and complete mess. Months of dysfunctional eating had screwed up pretty well every thing in the chemistry panel and so on.

My doctor couldn’t quite resist one horrific kind of treatment which I may or may not describe later. He’s a good man with good ethics and I do believe he wanted to help and was probably subject to doctor peer pressure a little… I don’t know. It was awful and harmful and while he did stop it sooner than some would have, saying he thought it had been more harmful than helpful it’s still hard.

So then he thought well let’s eliminate some stress and get some more health things taken care of. The problem with that approach was of course they kept finding big things not small things. I came out of hospital looking like I certainly still should be in…  My knee surgery came up while I was still in so when I finally was wheeled home 3.5 months later it was with a brace on, and an indwelling catheter and a host of new medical woes to be looked into in the months to come.

Through all of this 18 months from when not being able to deal effectively with change blew my life so course until now I have sometimes felt guilty when I blog or read blogs. I felt like I had a dirty secret about my autism that I just realized while commenting elsewhere isn’t so awful.

When there were autism positive flash blogs at a time when I knew mine would likely cost me my freedom at least for awhile again I couldn’t be possible. Off and on for the past 18 months I have felt so angry at my autism. It feels taboo to admit it. Tonight thought I realized why it shouldn’t be. Why I had probably been ashamed for no good reason…

I have a lot wrong with me. Probably in terms of disability the next most serious is my arthritis. I was replying to a comment on a blog about how the response to the attempted murder of an autistic child was dehumanizing to autistics. Despite that being the central premise of the post someone commented calling the victim a burden and out came my deep dark secret.

I was trying to explain why it is never okay no matter how much harder than average it is to lose sight of the person’s humanity. That in my own case I had done that a bit to myself this past week apologizing for being a source of stress and the family member in question wrote back to remind me of everything else I was. (Considerably more positive than stressful thankfully because in my depression I had lost sight of that)

I admitted I get mad at my autism. I do imagine that without it 18 months later I wouldn’t be hanging on by less than a fingernail. It is big to move for everyone. One of the higher things on the stress scale I gather but millions of millions of people do it all the time and very view are still totally messed up 18 months later.

Still the anger I feel about the degree to which my autism makes dealing with change not just difficult but for nearly every kind of change close to impossible isn’t really that different from the anger I feel when my arthritis eats up yet more of my mobility and there is a mismatch between what I think I should be capable of doing and what I can. In both cases you feel angry, you reach acceptance and then you move on. In the case of my current upheaval I do seem to be breaking records in the not able to move on category but that does not make me less than human.

I had felt like a traitor to the cause I think at times when I felt anger or even fear when it came to my autism. Sometimes I feel like it may have cost me things I dearly wanted even though it might be more accurate to think a medical system that makes artificial barriers when it comes to autism and decides who gets support based on things that don’t have anything to do with their actual autism could be a culprit there.

Very recently someone who has never met me made a decision about the only service there is for me at the moment, The  only service outside of hospital that ever had any success but this administrator has never met me. She concluded it wasn’t clear enough the service even helped me and therefore didn’t want me to have it. In the end she had to agree to every other day for a month. Her reluctance to have me seems to have trickled down to staff who previously were capable of treating me like a human but now focus on that date and making sure I don’t get a second too much of service. Somehow this week a a doctor’s appointment they had nothing to do with and Rosh Hashanah counted as service so  saw them all of twice not the three to four times we should have.

I cried about this when I heard. Right now things are very tough for me most of the time I am alone. Without services I have no chance. I felt angry too as since I had very noticeably gotten worse each time service from them dipped below about 4 days it couldn’t be clearer I benefited. My case manager pointed out I don’t get better and my affect doesn’t always match how I am feeling.

I felt discriminated against based on having multiple disabilities. My autism causes the affect mismatch. It sets up this weird situation where if I fall into a routine activity I guess I just do that activity and the other concerns are absent for a bit. I look better but when asked how I feel – the examination of which isn’t part of the activity- I have to answer truthfully and the answer hasn’t been good lately.

Apparently as far as depression goes it is very rare that a person doesn’t respond by the 4th medication prescribed so we have a support system that is geared pretty much entirely to a quick chemical recovery and I don’t fit. My autism gets blamed for the medications not working rightly or wrongly. My autism gets blamed for other interactions with the various teams being tricky (rightly in those cases I suppose) but is it fair that while extremely acute my level of service was based not on that but by the perception of someone who has never met me? Even the team members who don’t especially like me know about the affect mismatch and I would be surprised if anyone who ever worked more than 6 times with me could say with a straight face I did not benefit.

No I don’t get well. Part of why I don’t get well in a nice circular way is the continual stress over services and support. Part of why they don’t see me get well is even at the longest time frame they offer they are not around long enough to see it. With this one I have wondered if I will see it.

My battles are not that different of a parent with a child with autism. Services and support being the usual things that drive people to despair. I get it. Because I am also depressed unfortunately the lack of those things has caused me to want to give up but I have done the appropriate thing when that was the case. The option when you feel that bad is not a good one. I imagine if there was a separate child me I had the charge of and I could not cope it would not be nice to have to say as much. To accept whatever might come of saying this is too hard. Something awful will happen. However it would be the only ethical action to take.

So now my dirty secret is out. I sometimes am angry about my autism. I sometimes wonder what my life would be like  without it. I am not quite sure having typed something similar in a comment why I felt such shame about feeling like that for so long because of course it is so similar to every other condition I have that is a departure from the “norm”. If it is okay to cry at the mobility arthritis robs from me well why feel like a traitor for crying sometimes about my autism?

Part of why I was hesitant to blog again is everything is still in turmoil. I have resumed some of my usual activities in creative ways for now because of the immobilizer on my leg. I have resumed my part time work although I do it from bed. (Don’t get any fanciful ideas about what I do for my work based on that)  I am doing my best but it’s been stressful and hard and I know my doctor isn’t sure what his next logical move is. He’s semi-annoyed at my orthopedic surgeon for not doing the first kind of operation he planned. I would have been immobile longer giving him more time to scramble to find something better than the 100 minutes of really low quality house cleaning that will soon be all the support I get period. Oh and the 60 minutes a month of my shrink, various and sundry other specialists slicing and dicing my body etc…

Still and all although I spent the bulk of my life identifying as an alien within myself to get me through the day, and even though I had a doctor who eventually announced I was right about that due to him concluding the sum total of everything different about me must be something in and of itself and wanting to look into that I am 99.99 percent sure I am human. While the occasional twerp has compared me to an animal and so forth the only one who gets to take away my humanity is myself. I do reserve the right to opt out of being human when too many humans appear to be doing and saying inhumane things.

People can only do what they can do and I have not had the energy to be out there too much on the outraged front as far as the latest event goes. I know there will be more until the culture we have changes entirely. It has to be challenged every single time any rationalization is made for killing a person based on well anything. I was going to say disability but recently someone was murdered in a brutal way for being transgendered and that is not okay either.

It is possible to say no it’s not okay to murder because your child, or charge has this or that and the mean school district or mental health people, or various other service providers are being insanely difficult. You can in fact acknowledge the many ways we could build a better system without linking the need for that to murder. We need better support in my own case not so I don’t succumb to my depression and give up totally but so that I can become a tax-payer. I may score in the totally hopeless range in the scales for daily living and adaptive behaviour but on the IQ test we had quite the opposite score so how did I get to be 45 and still be a drain on the taxpayer instead of paying taxes? It’s easier?  I fall through the cracks? Those questions are the reasons I am told but I phrased them as questions to highlight how silly it is.

My bottom line when I try to explain why my current life makes me unhappy comes down to it lacking a lot of the things that adults take for granted their lives will contain often without too much effort. If I thought all those things were truly impossible I would not get upset about it at this point. I would make my peace with it much like I know I will never climb a glacier again. It is knowing I could do so much better with support and knowing how horrifying my life is without it that makes me upset.

Ultimately I guess I cannot dictate to people as much as I would like to that whenever they see a rationalization for murder they challenge it.  For anyone but myself I cannot say please you can say how they system needs improving without linking the current state to an excuse for murder and so it goes.  I took a lot of tests this summer. Blood was drawn maybe 50 times and the one thing that did not come up in all those tests is that I lack humanity so please don’t rob people like myself of it with thoughtless comments.

Summers in the Sun

Mombrorsajeg 1172x856Finding a trike for a Viking sized toddler is not easy.

My mom died a week ago. Such a short sentence for such a complex reality. There were so many times growing up I felt like a motherless child and so wanted to like the song that sings about that but now I really am one.

It wasn’t an easy time we had growing up for many reasons. My mother was a turbulent and troubled woman, shaped by an extremely early marriage to a very domineering and difficult man. She did her best at times. Or I suppose all of the time she did the best she was capable of at the time but sometimes that best was so painfully short of the mark it’s painful even now.

There is a subset of the human population that is blessed with a gift for denial so deep that having made up their mind something didn’t happen they can come to believe their version of the truth and live it. I saw my mother do this with many things over the years but the one people have wondered the most about has been my autism.

The way my doctor explained it to me when I was 18 and had been hospitalized for the first time making him seek access to my medical charts as far back as he could get it was normal for parents to be advised to forget about it once certain goals had been met (basically they knew you were not mentally retarded and your speech was okay) . You were labelled with residual autism but it was never to be spoken again or risk your backsliding into preferring to spin mad circles in your big wheels for hours on end, or stacking your pennies over playing with people or something more appropriately toy like.

No one may have ever followed that advice better than my mother. Every so often I caught a hint my parents still had some of the same concerns but the “A word” was not spoken. When we moved to BC at 12 and I not only wasn’t able to make friends but was relentlessly bullied there were many hushed conversations.

The next summer the girl who had been my best friend in the last subdivision we lived in in Calgary summered across the lake from us. I had the easiest babysitting job ever that year as it mainly involved sitting in a boat and spotting for a former professional water-skier while making sure none of his kids fell out of the boat. We skied across the lake and I swam in to fetch my friend, and my employer dropped us off on our beach.

We played Masterpiece in the basement as my friend was particularly fond of the art auction phase and had a phrase to go with it that I remember to this day. It was the best I had felt in almost a year. I heard my Dad come in and could hear some surprise in his voice and came up the stairs to fetch drinks for my friend and I to watch his face fall a bit as his statement that it was almost as if I was playing with XXXXX again was answered by my Mom’s statement I was. As I emerged whatever other intense discussion would have followed evaporated of course.

Although in those years concerns about my social life, my functioning and so on would get expressed at times nothing useful was ever done to re-mediate anything. To do so would have been to open the wound of my being defective in the first place as that’s the message I absorbed in my much younger years.

I don’t know if anyone ever tried so hard to not be defective. Probably some have but nothing I ever did was the secret to what everyone else could do so easily. Times were not easy for my parents and we went through many grim things which I will leave out of this for the moment.

In grade 11 I wound up in an unofficial foster care situation. A very caring man who was a teacher at my school and his wife took me in when enough was discovered that my removal from my family was certain. Everyone felt throwing me randomly into a very broken foster care system would be my undoing and so I went for a time to stay with this teacher and his wife.

I was still walking up the stairs, my pseudo foster mother was asking me what I liked to eat and questions like that. Questions I had not been asked in my life ever and couldn’t really work out why she cared. I was accustomed to eating what we had to eat and that was that. In the context I had at the time I thought this concern about my likes and dislikes and potential allergies was very odd.

One might be able to predict with all that I left out that I would wind up estranged from my parents and I did. For many years my doctors felt no contact with them was best and I do think I did need that to heal from everything I didn’t mention. My mother was first diagnosed with cancer just before I cut of connection with them completely and I got a lot of “your poor dying mother” guilt ladled on me but I did what was necessary to make my peace with the life I had so we could have a relationship at some point however limited it might be.

We did get to a point where I could indeed go and visit my parents. It was never free of stress by far but my mother and I had some good times all the same.

5 years ago the cancer that had been assumed to be beaten came back with a vengeance. Something miraculous happened those 5 years. It had started earlier but sped up considerably. My mother started to become the sort of mother I hadn’t known existed when I was young. When I was coming for my visit she was keen to have me dictate what I wanted to eat that I wouldn’t make for myself. She started to send me home with things to heat up and so on. I tended to visit in the summer and as the years between my first stop over really in the company of my brother lengthened the time I could manage also did. Two weeks in the summer started to be fairly routine and sometimes at Thanksgiving or Christmas.

The world regards her courage as being tied into her long fight with cancer but is that courage? It’s true she seldom complained but it wasn’t a battle she chose. In my own mind her real act of courage in recent years was to actually confront in some way the mother she had been and to change that. She wasn’t much into talking about it although sometimes expressed regret for something she didn’t do but every visit, for the parts she controlled anyway, was better. To me it takes more courage to confront things you could have done differently but didn’t and what those things cost you and choose to change than to battle a disease that will claim so many of us. It’s true you get to make some choices even in a fight you didn’t choose about how you go about it but to tackle something painful head on is for most people it seems harder than charging into a battlefield.

She got really angry at my father back in July when I had had a heck of a time tracking down my brother’s phone number for her so she could phone him. I spelled out to her something I had never dared say about how that particular brother was more vulnerable to how our father treated him for whatever reason but that I thought it made it hard for all of us to have a relationship with her.

It was clear she knew that. My father enquired what we were talking about and she spelled it out for him and atypically for him his reply was very mild. In my entire life until that moment I had never really seen her stand up that way to him. There would be the occasional look or a shouting match but things inevitably ended in a draw. Not his quiet monosyllable in Danish that acknowledged he heard and understood and even accepted the truth of it, but apparently had nothing to say about it.

We all went there in December and had a few days together and it was better than one might dare to expect which is fortunate as none of us were able to make it to her bedside in time to say any other goodbye.

I was calling her almost every day the last few months. We had always respected the line about actually crossing the line and uttering the dreaded “A word” but for years already when my mom spoke to me about myself she would speak as if she understood completely how important some things were to me. I was bolder and bolder in how I spoke about my life and she did not yell or deny it but still there was a line I felt was inviolable without causing her pain.

I had as most people know a very difficult year. Well face it we are heading into difficult month 15 now but as part of that of course we wind up seeing a lot of doctors, and having a lot of professionals in and out of our lives. My parents had always previously spoken of me as sick. That being more palatable and I do have horrible depressions co-morbid with my autism although there was a long spell between my last one and this horrible one.

A few weeks ago I said my doctor wanted a new reassessment of me so he could get services more appropriate for my condition. For the first time since I was very young although she did not utter any word starting with a it was clear my mother wasn’t denying it anymore. She said, “I hope they don’t think you are crazy because you are not crazy.” Very firmly.

I said: “ I know Mom. Don’t worry they don’t. “

To which she replied. “Good”

That will be all I ever have from her to say whatever it was meant to say I guess. I know from how she treated me in the last years of her life she had comes to terms with the person I am but communicating how different I am from other people was some last taboo.

I searched her room for some last communication from her. There were things that suggested I had been on her mind in those last weeks of her life. She had added to my previously infamous 3 page baby book, indeed she had created a second album that I did leave with my Dad although it was primarily pictures of me that I had not seen.

People talk about autism acceptance a lot but the fact of it is I spent much of this year beating myself up for the way my autism so catastrophically derailed my life at a time when my mother needed to know I would be okay. I couldn’t go to her this summer. Will never sit on the beach with her again. Never coax her into the water with assurances that it is warm in years when warm is late to come. Never watch her own unique way of swimming from further out in the lake.

My acceptance of it is a not a done deal but a continual process not that different from my mother’s although free of the denial component for the last two dozen years. So many times I have wished I could have been the daughter my mother dreamed of when she tried so hard to have me and then to keep me viable.

Of course acceptance in any relationship isn’t a one time thing is it? I sit and struggle with the pain of wishing my mother could have reached the point she did sooner, or that I could have been stronger and not collapsed so completely as a result of change that I could have been with her this summer. I too would have many times preferred almost any other mother and that was fair enough for the times I thought those thoughts. I suppose in fairness the same might be said for her. That many other daughters may have been more in line with what she had in mind still in the end she was courageous enough to change her ways. She never spoke of the changes or what had driven them. People may speculate awareness of her mortality but I think it would have come nevertheless.

So I sit, and I cry and I miss my mother. The pain and the hurt of many years do not get completely erased by the seasons in the sun and sand and water but they fall into a different context for me. They make me appreciate the act of will it is – and always is to be a better mother to me as I chose to spend the years of work it took to be able to be a daughter.

I went into it all with low expectations but my mother far surpassed them. The love between a parent and a child is a bit of a given but that love in action is not always apparent. In the end we had that.

In the past year when it seemed clear to me her time was near. I sometimes remarked because I feared this very day that this improvement of hers in her mothering would make all this so much worse in the end. Your mother only dies once thankfully so there is no contrasting how it might have seemed if she had remained as she was through much of my life about some aspects of my being but now that my fear has come to pass I think I was wrong. Yes it hurts more I suspect because I have more to miss. I have lost something enjoyable and warm. However it could be that to have lost a mother without ever getting to the stage where the things I did in the end, experience were a given would be so much worse.  I’ll never know.

I love you Mom. Your memory is a blessing and I will remember you in every glint of the sun on the water and each time I glimpse a beach.

DanishbeachMombeachtowel

nsbeach 2514x1603

G-d, Acceptance and the Autistic Spectrum

My sister-in-law pointed out that parts  of this blog post are a little confusing as they assume familarity with the events that were going on politically around disability at the time in the US)  I don’t think I would have gotten anything out at all if I had had to clarify too much my concerns about how autism is viewed and at the time I wrote it I was spending a lot of time in a virtual huddle with people in blogs and facebook following things so I was a bit blind to what might need explaining to those not as entrenched in the political aspects of disability) It’s true my English teachers would have subtracted marks for it but sometimes you just have to get words out.

 

G-d, Acceptance and the Autistic Spectrum

Years ago I wrote about G-d as far as autism goes. I wasn’t going to tackle that subject in my first actual new article for a number of reasons.

The first was one of those reasons is I am reluctant to express something that could be seen as the notion of people with disabilities are somehow more special in the candy coated ways that circulate on the internet now and in the “olden days” in print media, and make me cringe.

The second was was followup to my journey as far as love goes a discussion G-d is actually a step backwards. Related to the first reason, I had a certainty as far as G-d goes before I knew that’s what people called that presence. I have a certainty of G-d’s love for me that is far less shakeable than the human variety and of mine for G-d.

The third is probably the worst reason not to address the issue. People who don’t believe might dismiss everything else I have to say as it’s clear in the minds of some people that a belief in G-d, and intelligence are mutually incompatible. For some reason they identify all people with a religion of any sorts as belonging to the fringes of their faith and therefore have and no doubt will again ridicule things I don’t actually believe.

When I first addressed the issue many years ago it was in response to the question, “How do you feel about G-d?” I took it literally and replied I liked G-d. When I found out the root of the question was the notion that abstract things are hard for autistic people and secondly that if I had somehow managed to get my mind around the concept of G-d was I angry with G-d?

I will start with the original question I guess before getting to the reason I concluded I would write about this today rather than the topic I had all written out in my head.

Despite have a switch that no amount of reading and exposure to literature is stuck in a default mode of concrete and literal, I do not recall a time when G-d was something abstract to me. For many years in fact G-d may have been the least abstract of all.

I had some time when I was more typical as far as my distance from the world when I was young. Those times occur periodically now even when I am under great stress but for a time I had the luxury of mainly being an observer in a world that hadn’t made up it’s mind what expectations to have of me yet. When words started to have meaning I still had some time left in observer mode and by the time I was willing to have sustained interactions with people long enough to have any sway over me my mind was long past the point where religious education would have made a difference to my version of G-d.

G-d having always felt present and real for reasons I can’t properly articulate is not abstract. I do wish I could because often these sort of questions come from people longing to include their child in whatever faith they belong too. Of course G-d and structured religious observance are very separate things and for now we will leave the broader issues related to inclusion as a separate thing. I will attempt to tackle it at some point because it is a topic much discussed and seldom really properly achieved.

My father fell at one point into the people in my third reason for not taking this on. He had survived World War two in occupied Denmark as a person of Jewish descent. I don’t know if that is what made him so adamant in his atheism for sure but in the aftermath of that a lot of people of all varieties of backgrounds couldn’t believe anymore.

My father took his atheism to a degree most don’t. When I reached an age where he could teach me things he would explain how there was not only no G-d, but also no beauty or love. All three of these things were crutches for the less intelligent. We should respect their beliefs but pity them for being so stupid they needed them.

He had a forestry background so he could very much prove that what we describe as beautiful is actually functional. I suppose he thought he could lead me in a sort of backwards argument from design to share his belief system. I was willing to be flexible on beauty. I wasn’t entirely certain about human love that being a somewhat long journey for me but about G-d he met his match.

There was a time I was angry at my father for trying to impose these beliefs on me. Now that I am older I feel a twinge of sympathy for him as it must be incredibly frustrating to believe you can improve the world by bringing intelligent offspring into the world, have that offspring’s intelligence questioned (and by extension you own superiority) and when no one was questioning it anymore still not be able to make a dent in what must have seemed like the easiest of the three to convince me of.

So what does all this have to do with today? Why did I choose this topic. One that is hard for me to express today? One that I never feel I can adequately convey to a largely neurotypical audience. (or even many of my fellow dwellers on the spectrum)

I chose it today because the last two weeks have been filled with an incredible amount of spin as far as autism goes. Important goings on in the US and the like that dragged all the truly anti-science, autism as tragedy, people out of the woodwork and somehow they were allowed the lions share of the media time and as a partial consequence the US ratifying a UN treaty on the rights of the disabled didn’t happen.

It may not have happened in any case as somehow disability rights are somehow tied to abortion issues in the minds of people I can’t really understand at all. Not because they are neurotypical but because they are so illogical. Also because some of them choose to disrespectfully drag G-d in to prop up their irrationality and at times hate.

Even if one was adamantly opposed to abortion in pretty well 100 percent of circumstances then wouldn’t it make some sense to ensure the lives of those who are born are better? Entitled to some basic protections usually extended just by virtue of being human? Trying to get my mind around their oddly paradoxical stance and where the G-d I believe in enters into is far harder than believing in G-d. I suspect this must be the case for a lot of people or that segment of the population wouldn’t generate so much political comedy.

Except this wasn’t funny.

It wasn’t funny because for every other group on the planet including other disabilities the hyperbolic, nonsense that was heard would at the very least be considered not politically correct but a more accurate assessment of it would be hate speech. If you doubt the latter try inserting some other minorities into the transcripts you can find on C-Span.

I made some attempt to lighten the grim and disbelieving mood of some when tsunami was included in the long list of horrible things those with autism and the “epidemic” of autism is. I said we should claim that for our own as of all of them a tsunami has power. I may just get a t-shirt made warning people that that is what I am in fact. Not a tsunami somehow spreading my autism but a counter-tsunami against those with a financial stake in perpetuating myths about autism. Those with an emotional stake in believing those myths who are frankly as much victims here as autistic people no matter what mean things they say. Those who say they can love a person with autism but not autism.

So you might be asking where does G-d come in other than tangentially invoked by the “enemy camp” as it wages war on me and my kind? I could have addressed this whole issue from many other more comfortable angles after all. Why G-d? Shouldn’t I after all be even more angry with G-d in the wake of the pain all this caused? Shouldn’t I have attempted more of the logical kind of attacks on the arguments that are so very easy?

The answer is in the second word. Acceptance. Like speech it gets talked of more often than not as somewhat binary. Perhaps a journey to get there but most people talk of acceptance as a done deal. I have written about it that way in the past myself which is why I didn’t just recycle an old article.

In truth acceptance is a continuous process for me. Naturally it is easiest during the relatively stable parts of my life span. Times when the consequences of being autistic haven’t totally blown your world apart in ways you can’t really get a handle on how to begin to reassemble it. Yep. It’s easy to accept your autism at a time like that. The kind of assaults made on myself and my autistic brethren would have been easy to dismiss. Or I would have looked at it in an entirely logical way and no doubt have fired off a few letters but it wouldn’t leave me feeling shaken a week later.

I am prone to very severe depressions. It’s a very common co-morbidity with autism which for reasons that escape me neither the health system nor disability services can help much with it. They told me years ago mine would never be treatable and offered up a cingulotomy as my only option. (In some ways even more chilling than a lobotomy)

In a year where having to leave my home of 14 years plunged me into what has been my worst and longest lasting depression ever,  as I was completely and utterly unable to cope with that change shouldn’t I even be agreeing with the tragedy model of autism? Shouldn’t I be really, really, angry at G-d.?

No and no. I am no saint as far as arguing with G-d goes. As a Jew theologically it’s perfectly okay to do just that. I don’t have to repent for it in fact it’s a bit definitional. I do beg, and plead sometimes that maybe, just maybe the tap could get turned down a notch. I don’t just have autism and chronic treatment resistant depression but very severe (and of course treatment resistant) arthritis and so it goes. Much of my family is sick and my life circumstances right now are abysmal.

I can’t be angry with G-d though. Not because I think he is still into smiting people. I can’t be angry because the ongoing foundation of the continuous process of coming to terms with my autism and it’s consequences is rooted in the years I spent alone with G-d. I know for a fact that however the rest of the world may feel G-d loves me.

Well sure some people will say now. G-d is love. Of course G-d loves you. Some of those same people though will also be keen to tell me how G-d loves me so much I will be perfect in the afterlife. Nearly all of those people are perfectly nice people and don’t even really see how hurtful a statement that gives them hope could be.

They don’t see that that is essentially the desire that I be someone else down the road. Granted it’s a road that my own faith has some uncertainty even exists but it is still really a statement that yes I accept your autism for now. I accept it because at some point down the road you will be perfect.

The first time I encountered a large scale assault on my person-hood by proxy was of course on the internet. Many years ago I came close to being banned from a group for passionately stating that I am as I am meant to be and the G-d I believe in wouldn’t alter me at some later date so radically that I am no longer me. That presumably since G-d loves me that love unlike the kind many humans profess is for the whole package.

Autism is pervasive. People sometimes see that term and not give much thought to what it means. Since it is also developmental what I take that to mean is it has shaped pretty much everything I experience and thus the person I am. I’ve had even other autistic people object to this as over-ally deterministic but I can’t find a good neurological basis to quibble with it.

Unlike other conditions which may shape part of you autism is in the brain. The bits you can actually see of it are not but that’s where it lives. That incredibly complex organ through which all reality is filtered. How can there be a non-autistic me that is still me? Why would I want that or view that as somehow paradise like? Take away my arthritis and although a quarter of a century of dealing with pain and decline has no doubt shaped me a bit I would still be essentially myself. The same could be said about pretty well everything even oddly enough my depressions which also live there because that is not a constant state. I wasn’t born depressed. I am not always depressed and no matter how long they last depression is a deviation from my usual self.

So this vision that is somehow hope inspiring for many leaves me chilled to the very core. I love G-d. When I was younger because so many people say this I actually had some fear that this might be true. How does one accept oneself when even G-d apparently views you as needing tinkering to truly make things a paradise for your loved ones?

When largely neurotypical humans dehumanize people with autism in way that again could be funny given our supposed lack of empathy is one of their stronger talking points right now, G-d’s acceptance and love is the foundation upon which I rebuild my own acceptance. That solid, rock of conviction in the centre of me that is G-d to me, when I am hurting less arms me with courage. A very shakeable courage granted. One that has me trembling even now.

When I truly listen as to the answer to why do I have to be autistic when with my intelligence and other gifts something much more spectacular might have come of my life the answer comes from there. Even when I doubt it I am reminded I am not only lovable but loved. Not loved because one day I will be something else. Not loved in that syrupy way where I am placed here to be a learning experience for others that will test and then strengthen their faith but loved as I am.

So why does any of that matter so much? Anyone who has ever gone past grade 8 in a semi-decent school encounter’s Maslow’s hierarchy of needs. All the basic stuff is in there and the essential premise is the lower order things like food must be met first to ascend up the ladder. Since this is my blog and not an academic paper which I did write on the topic I will say Maslow is wrong.

People can go a fairly long time without much of what is there, or diminished quantities thereof but without meaning why? I get sometimes in the absence of an actual clinical depression what I call existential depressions where I wonder why the heck am I here, taking up space and not accomplishing much. At this point in this very long post you might be able to guess where the answer comes from.

The atheists and agnostics out there might try to be nice at this point and conclude okay the tragic figure writing this needs to believe all this to keep going. To give her a sense of purpose. So she has constructed a theology and an illusion to give that purpose extra oomph in ways that are not too dissimilar I suppose from the very ways my father insisted stupid people did.

My faith is strong enough that I don’t really even have to go there. G-d exists. G-d loves me. As to the existential bits the less abstract part of meaning is mission. If I accept the previous premises and I do. Then what’s my role?

I occupy a weird spot on the autistic spectrum. I’ve been kicked off lists for being too low-functioning. I have been deprived of life sustaining services for being too intelligent. Diagnostically people again treat functioning as fixed when in reality how severely your autism is impacting your life depends on a lot of other factors. So why be caught in what is probably one of the more uncomfortable autistic realities where it’s really no ones job to look after you but you can’t actually look after yourself?

The only answer that has made sense to me comes in the form of what I view as duties. To try my best to make things better for the next generation of those on the spectrum. To try my best to express things that others cannot express. To be that counter-tsunami opposing the storm of voices yelling words that strip me and my kind of my humanity. The constant flea on the back of massive organizations that have twisting the reality of autism as in their best interests. You can’t really raise money on the premise after all that autism comes in a variety of forms and that with appropriate supports all autistic people would have a better quality of life. Why can’t you though?

Why do we have to be cancers, and plagues and burdens to get people to write cheques to groups who then spend the bulk of that money perpetuating those same images. Again if it wasn’t so painful there would be some comedic value in that autistic people are supposed to be so concrete yet many people can only sort of define us by marching in step to a completely hyperbolic, tiny violin playing tragedy model.

Wait, you are going to say. You, yourself describe your life as hellish a lot. How isn’t it a tragedy that you live this life? You have as point there. The tragedy though isn’t my autism. It’s the ways of viewing it that create artificial distinctions among a group that by definition share key traits that are in fact quite disabling. These distinctions mean the majority of people with autism get no real help outside their families although there is regional variation there.

My gifts and talents go largely wasted not because I have autism but because people make money focusing on the very small portion of the autistic spectrum guaranteed to get the most cheques written. Even though people spend the vast majority of their lives as adults and the majority of those with autism do not actually have intelligence deficits those are too places the line gets drawn. The third is sometimes speech.

I very much doubt the adult autistic reality will alter in my lifetime. Sometimes when I read things I wrote 11 years ago I wonder if some of my optimism about how things were improving was totally misplaced. It would be easier to throw up my hands in despair, give in to the many nights of temptation just to walk into the sea and be done with it.

It would be easier and I can’t say the thought doesn’t cross my mind right now more than it should but it’s not what G-d wants from me. That really would be a life wasted much more so than now.

I am not alone in howling back against those who seek to make us less than human. Years ago there was no autistic culture. No way to support one another and then along came the internet. If one can say any group needed the internet more my money would be on those with autism.

Not everyone fighting the stereotypes gets their courage and conviction from G-d. I’m far from the most courageous one in the battle even. Although if one defines courage and beauty as Kierkegaard did as repetition then repeatedly throwing oneself into an onslaught of dehumanization from better armed and funded opponents will have to do for courage. You can call me a plague, a burden, an epidemic, a tragedy, waste of intelligence, and yes please, even a tsunami. Yet to the extent I am able I will reply I am Kis. I am human. I am as I am meant to be. If my life and the lives of those with autism seem tragic to you then by all means do something more productive than denying our humanity and basic rights.

So for me that is why I exist. That’s why in the face of acceptance being an ongoing battle this is a fight I could only be in with the conviction that comes from G-d. A G-d that loves me unconditionally. That loves me as a person in my own right. So illogical, hyperbolic, unethical spin-doctors say what you will of me. It might even hurt a bit, for a time. Yet I will just have to get up and launch myself back in some form or the other at you. You will dismiss me, ignore me and even block me. You cannot however, deny me something which wasn’t granted by you in the first place. While I may sometimes question why I would even want to be the same species as people who drag their own autistic kids to hearings where they say all this hurtful stuff at the end of the day I am not only human I am the human I am meant to be.

Hyperbolic, illogical, insensitive, unethical people can only hurt me temporarily. I wish I could say they don’t matter but since they are skewing the vision of autism at the moment sadly they do. Luckily for me none of them will ever read this.

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