Why I Keep Trying in a World that Would Prefer I Don’t Exist.

A commenter for my flash-blog called it a rant. Hard to read and so on. I am the first to admit that my writing is nearly entirely generated by just starting and carrying on and in that specific case I gave up when WP restored unedited versions over and over again.

I would call this explanation of why I keep at it an uncomfortable truth but it’s not about climate change so someone might object.

The commentator later said it was her own issue for losing attention but I know there are others out there who I wish could hear my ideas but who can’t wade through them. Both in real life where I either talk not enough or at a frantic pace, and here. It was also too late to keep my deepest inner demon from fully surfacing and concluding only saying that demon is a huge part of what drives me would be honest.

I cry when I admit the full truth of what I see as the danger is in the whole making a label into a global crisis thing. When I was young autism was seen as much rarer but also in terms that set us apart from pretty well every human out there. Our fundamental deficit was seen as an inability to love.

That’s pretty bad science really, getting to a notion of an emotional state or lack of it based on observed behaviour but that the bulk of people identified as behaving autistically back then grew rigid at human touch, screamed and so on if the issue were pressed. It was not seen then as perhaps some sensory issue that made all those things so unpleasant but an inability to love period. Now they dress it up as a deficit in empathy which is just as absurd but maybe a less painful notion for a mother to take in.

I’ve written that my mother improved at unconditionally loving me in the years leading up to her death. What I left out was while that improvement was happening her mind was being changed not by anything I said or did, but by cancer eating away at her brain. I have lived with having to wonder how much of what finally did amount to my experiencing unconditional love from her, was a result of cancer eating up previously held notions and inhibitions that had until recently led to behaviours in my mother that made it obvious while she did love me that love was tinged by shame.

It doesn’t actually diminish how wonderful being with my mother was when her mind was more literally changed was, to understand the brain well enough to know cancer munching away was helping all of what should have been there from the start. It’s less painful to tell myself I came to terms with things and certainly since she is now gone from the planet less painful to not admit this core motivating factor fully.

I’ve seen how ineffective words are in changing people’s opinions about autism. I cannot really live with notions that other parents wind up thinking thoughts that are downright wrong about autism and then more people get to grow up knowing pretty well any second they dare to observe too closely, how much their parents are ashamed of them. I can’t live ethically with not pointing out when a huge leap of logic is being made that could be destructive. I can’t because for me the things people knew about autism caused a complete parental surrender and some pretty horrific things which I will not write about here.

So yes I do tend to ramble. It beats truly facing that very fundamental pain that comes from knowing not that I could not love my mother because of my autism but that she could not, the way love is most fully defined love me. That it ironically took the presence of pathology in her own brain for her to finally look at me with the kind of love a few other people do possess for me.

If I am lacking in empathy for having spent the better part of my life fighting for a better handle on what people meant when they say love then I guess I would prefer to lack empathy than to be so sure I knew what either love or empathy looked like across the full spectrum of people that I said such and such a group is deficient in either.

I don’t think I am actually deficient in my capacity in either case and certainly what I have seen the so called “normal” population do while claiming to be good at empathy would make me wonder about how they define it.

Imagine knowing the people you care most about are often embarrassed by you. Listening as they start explaining you, just in case, before you even get a chance to screw up socially. That’s the less painful present the past was so much more horrible.

In the end I think my mother did experience more unconditional love from me than most. I didn’t hold the pain of knowing what it took to get there against her but more the world that shaped her and that’s why I am passionate about the narrative about autism. I am 45 years old. My life is more than half over. I don’t need to spend time writing things that get summed up in a way similar to my being summed up was. I do it because if society as a whole adopts toxic visions that link autism to horrors that are not scientifically supported, there would be little point in walking the planet. I do it though most of all in the hope that no little human ever is written off by their parent before they even got a chance to show them in a way that made sense to them that they did indeed love them.

It’s not news to me the world views me as strange and bizarre. There are worse fates than not fitting into a world that has some pretty weird values though. The largest good I am capable of is making people wonder if they are right about what autism is so I try. If people can’t find my message in a sea of words I am sorry but I have to try.

The world is a horrible place to go about in any sort of an obvious different way as it is but I don’t really care about changing the world as a whole. I just have to hope some parent of a young child does wade through my clumsy words and question. In real life I have been there to make people question notions they otherwise may have believed in destructive ways, but in theory you can change more minds on the internet. It seems largely a theory right now as I don’t think I have seen one change in a measurable way through my writing on my blog.

I say young child not because I am confused about the longitudinal nature of autism but because parental fear and misconception needs to be altered before it can do incredible amounts of damage to both groups. I cannot see as a type as the tears that started when I began this document have been a tad unrelenting. You can come to terms with damage like knowing for most of her life your mother doubted your ability to love but you can’t run a nice scan on your brain the way you can your computer and fix the impact of that.

When groups set out to make me less human for profit, at this point in my lifespan on some level I wish they were correct. It would hurt so much less if I was as completely lacking in common emotional ground. I may show it in different ways but I am very much human. My life is not less valuable and it darn well isn’t something for people to profit off of demeaning.

The uncomfortable truth is I was barely an adult before I had to think that this world could only be made better for the next generation of autistic people. Those of us emerging into adulthood in an era when only the classical looking were being labeled at all were already shell shocked by a lifetime of narrow misses with presumed incompetence making some horrific things possible.

When I see the gains that were made for awhile being erased so that pretty new children are subjected to therapies and views that we keep hoping were relegated to the past, and this erasure isn’t even being fed by science but by unethical fund raising yeah I will rant. I don’t like it when words hard come by are dismissed as one since I know when I have been. I am only sorry my message may get missed in a real rant.

This in case anyone is wondering isn’t rant but my own uncomfortable truth about what it has meant to be autistic. The most uncomfortable truth in my past. The most uncomfortable truth in my present is that people still think these things. I’m not that great at throwing myself into the gap created by different neurology clearly but I do have to try.

I won’t stop as long as there are people anywhere using disability of any kind to justify those people not being allowed to live, or having lived being described in ways more suitable to plagues and natural disasters. I am stubborn that way. My tenacity in the face of what others would take as defeat may be the best gift of my autism.

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.

 

 

 

 

 

Enough with Making Distinctions.

In the past weeks blogs everywhere have been exploding with critiques about the group I refer to as Voldemort Speaks. While it’s enjoyable to see more metaphorical allies take the field embedded in a disturbing number is the notion that one of the reasons what is being said about autism is wrong is that it is a spectrum disorder. Which it is but that doesn’t make it an ethical point.In the worst case scenarios some go on to say some people with autism lead productive lives.

I say worst case scenario because the group I don’t name is an offense to humanity. If I never wrote a single thing, or read, and if my diaper had to be changed and so on any portrayal of my life as a catastrophe, an affront, something to stop would be wrong. If I, improbably now wind up with a PhD someone pointing to me as a beacon of hope would actually be quite wrong. It isn’t usually thought of that way but it would be.

It may be an advantage of black and white thinking to see that. Every time someone refutes not only Voldemort Speaks position this way but other like minded groups, they are shoring up some disturbing notion that there is a line a human can draw at which point another human life no longer has value. I never did master the complex social skills that lead to procreation. I have though hunkered down wrapped around lives that most would view as pure misery, Wrapped around quite literally in one case as the level of uncontolled seizures that his body endured could break bones. He was at the limit of anti-convulsants that wouldn’t also kill him so there some person had to lie. He had to be held always for the same reason. He could not see, hear, speak or move in any non seizure related way. I hate to think what Voldemort speaks would say about him but thankfully he didn’t fall in their area of non-expertise.

His family, while capable of the humour that goes along with the notion that their son’s only activity was seizure activity, always treated him with such dignity and respect. They belonged to a culture where as the eldest son he had a status over his siblings and  they were affluent enough to purchase the trappings of a little prince for him. He was treated that way. His father would dress him in silk pyjamas and read to him as if he could hear (many years later when fMri’s came along it would be concluded he did indeed hear something against the expert opinion until that day) I had become as someone young, and strong, with experience with medically challenging children the last hope often of any rest from truly around the clock care. I saw lots of people in situations who if anyone could lay claim to the catastrophe vision of their kids lives those people could. Yet they didn’t. While that boy occupied and extreme so too did his family. The presumed competence well before anyone was urging people to. They did it naturally it seemed. They were worn out and tired and hoped for the sake of their other children to be able to close the door on their son’s room knowing someone quite literally had his back.

I don’t know what private demon’s they had fought to reach that state in the face of everyone telling them otherwise. His father asked me once if I had seen “My Left Foot”. I said I had. He went on to say it could be possible that trapped even more deeply inside his son there could be a genius. His father was a brilliant man. He and his wife could no doubt produce one and nurture one but the neurological reality for his child was even if that had been the case new destruction was being done constantly. The human brain is resilient but actual genius is a territory rather rigidly defined and while I had absolutely no argument with treating every human as if they may be one on principal as being preferable to defaulting in the opposite area the notion he could be and would never have the physical capacity to use even the most futuristic technology to express it was a horrifying one for me. Not clearly for his father so while I found it a scary notion I didn’t question why  he wanted to think that. It worked. It was his son and his view of his son and not mine to question even in the awkward position of someone point blank asking me if I agreed and being truthful to my bone I couldn’t really have an argument about it then beyond the nagging voice that wondered and if that wasn’t possible what then? As the movie was recent back then I suspect they would have been as steadfast but logical people tend to need a reason so my suspicion is they would have found another but I cannot know as I was not them. I would not presume to know what it was like to be them. I could only know what it was to care for their son. It was inspiring but not because he was rising above anything in inspiration terms. He is not much altered now from how I first met him beyond being older and now with hearing aids.

They were the most unquestionably, loving parents I had ever encountered. It no doubt helped them when staring down any expert that they were both well educated. I was troubled by the hint that some of what drove his father may have been the notion his boy could be a genius but it seemed unlikely that was anything other than a new motivation as he had asked if I had seen it not read it and they were clearly practiced in the art of presuming competence. They were the only family to ask I attempt to teach a second language to their child. I was used to having to defend wanting to teach the alphabet which didn’t seem like an option here as his hand could not be dragged though anything without caution.

They explained they had noticed their son was his most relaxed during his bath so during that time if I could work on 20 key words from their native language that was likely the best time. I was dumbfounded really. He had at the time no receptive facility at all let alone an expressive one. Years later with a lot of amplification some sound was getting in. I didn’t even work with him by then as he was too much of a challenge for my arthritic body early on even though I very much wanted to. My longest term client remarked to me having somehow remembered that I had worked with him as that had been at a time, when no one thought she herself was taking much in, that he could hear now. I asked her for details which she couldn’t really provide. She said well he has hearing aids now and sometimes he smiles when you talk to him. They like all the chocking risk students ate together so she knew this and was willing enough to talk to him although until that year it had seemed an exercise in futility. His bath had been the only thing to previously get a smile out of him so this was news indeed.

The catastrophe model of disability would have both the client who provided me with an update and the boy she described essentially as only burdens. That one did learn to talk, read, and write and use the computer in no way says to me that her life has more value than his. That I can talk most of the time if I talk at all does not make me better, that I can express my thoughts does not devalue the lives of those who cannot.

Both these children met ethical criteria for being euthanized at birth. They never called it that though. They always said that they would be kept warm and clean until nature took it’s course. That they would be hungry and thirsty never seemed to bother people. The client who was by far my highest achiever had a father who wanted this for her. As far as I know his position on it never changed. He had declared when her mother said no that should she survive he would never spend a dime on her care. Oddly enough this very position made him quite motivated to make respite care easier to access and funded. He was loving in many ways, devoted, but stubborn on the whole should she ever have lived concept.

I couldn’t grasp this either. Not because at the time his view point was first articulated she seemed necessarily likely to “amount to much”. I suppose to some degree my failure to grasp it may have come from having been another devalued life but not entirely. She was my first respite client and the author of my future years with children quite a bit more severely challenged than she was. She was also my last, despite a desire by the agency that employed me to cough up kids and adults more suited to my physical needs recently.

I never encountered any who were not human. That seems obvious but clearly not or why would anyone seek to lay out criteria by which they could simply be left to die of thirst or the consequences of treatable medical issues? Right now somewhere on the planet people who meet the dubious criteria of being high risk for having a child with autism are being urged to abort sons. They ignore the science that would suggest that very high risk group has as much as a one in two chance of having an autistic daughter. That anyone would think it was anything but an exercise in pseudoscience to tout this as screening for autism when it is nothing other than selecting based on gender will no doubt fall apart in the court of law in a few years when someone files a wrongful life suit. I use risk only because that is how it is described. Not that I agree with the terminology.

Wrongful life. I am told I could get some compensation from the producers of a pharmaceutical my mother took to ensure I was not miscarried. I could get more than most I am even told but to do so I would have to say I fall into a category of people who never should have been created. That the deficits linked to this medicine one of which is fairly central to who I am mean I should not have lived at all.

Since I snuck into the world seeming like a miracle as no one thought I had survived what looked like a full miscarriage made my parents so happy for not very long. I was escorted home gift wrapped in pink. My father had told the neighbours if a pink flag went up to come for a party but if a blue flag did I was a son. My brothers are typical or at least fairly typical. The lack of celebration for a son was not due to any fear about what that might mean but simply they had tried for a daughter. My mother wanted a daughter an unhealthy amount no doubt. She had visions for me like I suppose all mother’s do that I would never meet. She was worse than most about hiding that but did improve with time. A long time. A life time but effort is valuable.

My mother was more prone to believe what people thought about people like me which at the dawning of the 70s was not much better and in no way more accurate than the current catastrophic narrative. Having read I was incapable of loving her I may not have seemed worth much investment. It did to be sure make my own journey with what love means considerably longer.  While evidence of my developmental delay can indeed be found in my pediatric chart so unpalatble was everything that went with having autism that I learned after her death my mother who had never uttered the word had told some people in recent years I had Asperger’s. For her that was progress and no doubt she viewed that as less grim despite every bit of science saying in people like myself there is no identifiable difference within diagnosed populations. Even if there was so what?  They have changed what they call me 5 times now in my life if we count the flirtation with notions of residue.  How would you like to be summed up as that? It seems a word usually used in unflattering ways but to be residually autistic was supposed to be great. That there was no actual thing didn’t seem to bother people or dawn on them. It was a brief experiment. That annoying people like me back skid into the more obvious variety pretty constantly even if they could read and had periods where they seemed almost undetectble from peers must have been annoying.

Back sliding is really the terminology they used as if being normal is some fixed point. As if enjoying yourself in a meaningful way were a return to something less desirable. Yeah so what. I stare at my dolls and stack my coins. If you want to extract a lack of imagination or play skills from that question your own competence. I said this in much more academic terms in a review on the literature on wheel spinning (I would have looked at play more widely but such a staggering amount of time has been spent trying to work out how to teach kids to push a car rather than spin their wheels it would not have been possible to get an A plus if I ignored the vast quantities of research there. )

I would never have taken it up with my mother how there was no better, and that to grow up knowing you had somehow failed by simply being given a label was an actual burden not the hyperbolic variety. A child even one who people doubt their ability not only to recognize emotion but to have them, is not oblivious to the pain they seem to cause their mother. That’s the problem really as much of the pain is purely imaginary. I could in fact love her. I do love her. She has died but despite being labelled in scathing ways by many she was the only mother I can have. I have had other, healthier maternal figures who did model unconditional love for me but she bore me and lived with the pain of a constant anxiety about my well-being. That much of the initial confusion about what I could and couldn’t learn was founded on ever changing notions doesn’t undo the harm those notions taking root causes.

Like any mother she did her best. Like any mother she was subject to notions of what goes with what people think about her kid. It’s definitional for mothers. Not that they go blindly along with it but that they do care. That my brother could handle a full table service before the age of 3 was also something that mattered to her. He had to as his was a more elegant time and place.

Having autism has more often than not been too hard for me. The most successful thing I did this week was a mad dash into a store to buy the three items I could get without risking coming so undone someone thought something needed to be done about me. A real risk as I was not capable of meeting any social convention beyond sticking my debit card in the machine and hammering out my pin before fleeing. I am not so oblivious as to not notice in my peripheral vision that makes people uncomfortable. I no longer care as their social discomfort at having to see me is nothing akin to needing to go there. My doctor had urged when trying to be useful to me that if crossing the street and entering the store was too much I could go to Subway (a sandwich place) and get enough for three meals at a reasonable price and safer. He too is not oblivious to having to dispatch me almost without useful support, week after week. His concern when laying out the whole so you will cross the street, enter the store, get a, b, and c, pay, leave and go home plan was evident and he faltered and offered up the alternative. I said in the kind of comment often taken for humour that for the kind of heroic effort entering anywhere was going to be I was not coming away with three meals worth of food.

This was hard. This is the sort of difficulty though that could be remedied with resources that do not seek to change me beyond making things less stressful and healthier for me. A single hour a day of someone who was actually allowed to help me shop or go shopping for me would be life altering. The only way to get that right now is to enter a program that would entail a change of doctor. He mistakenly thinks I have an abandonment issue rather than a change one. Pretty sure I do know the difference and  I do honestly think he is right to think he is more useful in his usual area of expertise. He just has the misfortune of being the only hired help person to not have changed in the past 20 month so to me changing him out at a time I can’t even be counted on to do something so routine as crossing a street and entering a store seems like asking for new complications.

I’m an adult. Most people with autism are. When I read notions of not being able to house autistic children becoming adults from my slummy place it’s hard to understand where people are coming from. I am not cute. I am downright rude at times if a person opposes me in a fundamental way. I have needed to be. I am not all that sorry as it has been a useful skill.

Like every adult I was a child but unlike every adult sometimes people still do treat me like one. Sometimes it is needed. I was not bothered by my doctor taking more pains with my plan for the immediate future as someone could come along and question his competence if I had managed to die in pursuit of bread and milk and bananas. I was happy to see some sign he recognized this would be hard as sometimes I feel like I say things are hard and he says I know but nothing changes. This at least laid out some of the trickier bits. Acknowledged that the bigger store might be well beyond me. It was since two days later I consider myself to be recovering from that. It had to be done though.

No doubt someone is wondering how the heck can I say all I do here and not be able to do something “easy”. What’s easy is always in flux. Usually hanging out with my dog and computer are the easiest things of all. I actually had a home supporter worker (I get 100 minutes in theory a week)  asked if I had eaten today which in 18 months of having them this time, no one ever had. Her time was up but she asked and asked if she could make me something. Technically without having bathed me anything I couldn’t make for myself she is not allowed to do. Strange and arbitrary but true. I am also in theory supposed to help her but while that was always emotionally exhausting now that it is also physically so I get a pass on that one. Since my beloved dog is a safety hazard, and must remain in another room at all times merely because he is a dog (imagine if a dog could have autism. Oh the never ending supply of untruths they could rain down on his tiny head) and I am not willing to subject him to the torment of having me out of his sight bathing even when it was needed is not going to happen. I fell a scary amount of times a few months ago because my little safety hazard needs to see me but he is my primary support I almost said person…  He is my constant and devoted companion. In a world that looks at me strangely,  views hospitalizing me when I get sick enough from totally avoidable stressors as somehow more the done thing than say providing more and much cheaper support, my dog is the most useful support I have. Don’t tell my doctor but my nagging abandonment issue is based on Shadow’s furry life span issue not any human being coming or going especially those the government pays. I tell him he could have done better for his human. I secretly do doubt that though as I sometimes also joke if not for the spiritual and logistical issues with being reincarnated as my dog that’s what I would be in my next life.

The problem is like for every human I know of 100 percent for sure this is likely the only life I have. It is because of that sacred. My casemanager was a bit flumoxed when trying to bring visions of eternal damnation into play should I think of killing myself when I said oh technically Jews are a bit vague on the afterlife and there was no such thing as eternal damanation for us. She seized on G-d as if thrown a  lifeline despite her professed lack of belief.  I had to explain well yes of course belief in G-d was fundamental but not this weird one you couldn’t fight with about things. That by definition a Jew struggles with G-d so in theory I didn’t need to submit to some other person’s version as G-d as the struggle is the point. Yes we have a few rules. All of which can be broken to save a life. There is no added exemption clause for a life like mine. I am here so my life is sacred period. No buts.

Without my faith and it’s community I may have killed myself or died from contemptible neglect of society to my needs. Sadly they use the fact my faith community so strongly helped me when it was most needed to actually further excuse any assiseance that I am technically allowed in policies that are enshrined in law.

My life, however hard, is not just as a spiritual matter worth saving but as an ethical one. As is every life. On a purely spiritual level life or the worth of a life is simply not ours to decide.  On an ethical one that works for me too actually. Any slide from a position that all of humankind is equal and equally deserving of the things that sustain life if not one that people subscribe to as part of their spiritual journey, is it too much to hope some of them appreciate the danger they put themselves and others in when they depart from that point?

Returning to autism. The fact that some do become taxpayers is not the reason we say to Voldemort Speaks that no  you may not catastrophize our condition and rob us of our humanity. Please no one ever think I am more deserving of not having my humanity ripped from me than someone lying on a mat in a developing country who never says a word. If you wish to oppose this group please do so but don’t grasp at things that by your having reached for them devalues people.

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.

 

Skating all over the Spectrum.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Shattered Hopes

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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