And I hate reading gloomy stories about how bad it is being autistic, but my excuse for this as it ain't the autism thats the problem right now, yest this is mostly politically right on social model ranting ....
Well not quite entirely to begin with as medically speaking I was feeling bad enough with a dose of what is euphemistically called around here "the galloping trots".
However notwithstanding my worries as posted in my last blog, the proverbial bombshell has dropped in the form of a letter which announces that on June the first I will be informed when my flats are to be demolished (so cue lots of anxiety because I want to know now!)
This has been hanging over me for some time, I even got to video the neighbouring flats being flattened, but I have been able to put it to the back of my mind as the date has been put off and off by various administrative machinations beyond my ken.
I know it is to my advantage if I am in the final wave, I might have a couple of years reprieve, time to get University out of the way, but my biggest fear right now is that it could be as soon as in the new year, the worst possible time.
The only upside is I will have a rough date (because I doubt if they will keep to schedule anyway)
Well I suppose the compensation will allow me to pay my University fees without a loan, something I have been cynically calculating on, however what if the amount of stress this takes, not to mention all the packing (which is a major job as I have too much stuff) really eats into my study time.
I have no end of anxieties over the whole process because I am in fear of moving to an unknown place and situation, where everything I am now familiar with is gone, and where I have to sort out all manner of daily exigencies, from where to park my Landrover (not always easy even now) to whether my neighbours will tolerate my noise, or I theirs.
Well I was supposed to have a social worker to helpe ease things, to negotiate with the various authorities in finding a suitable replacement flat, to assist with organising my move, but where is he? On holiday of course, but I doubt he even had any inkling of what is happening, and of course he is supposed to keep himself informed.
I am on my own as usual.
Can it get much worse? Well if you do factor in some other non autism related medical factors, like my being temporarily incapacitated after a couple of operations, just at the wrong time, because this is another of those unknowns I am waiting for.
Watch this space, what I have done to merit the Chinese curse of living through "interesting times" which seems to be my lot :(
Tuesday, May 30, 2006
Saturday, May 27, 2006
Destructuring nightmare
No this is not another post modernist critique of structuralism, but my imminent fears.
I have just completed seven years of college education, having started part time, and ended part time.
However I realise I am about to lose an important structure in my life, a reason to get up at a particular time in the mornings, and inumerable rituals over when and where I eat.
You might not think that is so bad, but I am looking back as well as forward, to the time in my life after my mum died, and all the structure in my life fell apart.
Unable to find work, when the work as a photographer started tailing off, my life really hit the rocks and that is somewhere I do not want to go again.
You see it is actually hard for me to organise myself without an external structure, and it is my concern that I am going to have to do this as a distance learning student.
Is there anyone to help me, well no I have virtually no support at all at present.
Is that going to destroy me.
Well no, because I am going to find a way.
It is not that I lack things to do, it is more a question of getting them in order so that any one of them gets done at all.
I have lists of course, but I need to keep them up to date.
The other danger is of withdrawing from social contact over time. I have friends, but there is little to persuade me to keep up with them, it is more a case of them continuing to pester me, else the same will happen that happened when I left Uni, I will simply get more and more out of touch.
Well what else is happening in my life.
Plenty, from hospital appointments to the neurodiversity group which I facilitate.
I am concerned right now lest I do not get re-elected onto the board of the NAS, because my business there is certainly not completed.
Life appears to suck at times, when you look around for what you want, what you think you need, and realise it is not going to happen.
It is like that pre mobile phone, and breakdown cover age, when I broke down on my scooter, somewhere close to the borders of Wales.
What could I do, after realising I could not push it all that far over those hills I did the only thing I could, abandoned it and started walking toward any farmhouse in the vicinity.
Well these days I have full breakdown cover and a mobile phone. With my land rover I need them :)
Would that the same were available for the rest of my life.
I have just completed seven years of college education, having started part time, and ended part time.
However I realise I am about to lose an important structure in my life, a reason to get up at a particular time in the mornings, and inumerable rituals over when and where I eat.
You might not think that is so bad, but I am looking back as well as forward, to the time in my life after my mum died, and all the structure in my life fell apart.
Unable to find work, when the work as a photographer started tailing off, my life really hit the rocks and that is somewhere I do not want to go again.
You see it is actually hard for me to organise myself without an external structure, and it is my concern that I am going to have to do this as a distance learning student.
Is there anyone to help me, well no I have virtually no support at all at present.
Is that going to destroy me.
Well no, because I am going to find a way.
It is not that I lack things to do, it is more a question of getting them in order so that any one of them gets done at all.
I have lists of course, but I need to keep them up to date.
The other danger is of withdrawing from social contact over time. I have friends, but there is little to persuade me to keep up with them, it is more a case of them continuing to pester me, else the same will happen that happened when I left Uni, I will simply get more and more out of touch.
Well what else is happening in my life.
Plenty, from hospital appointments to the neurodiversity group which I facilitate.
I am concerned right now lest I do not get re-elected onto the board of the NAS, because my business there is certainly not completed.
Life appears to suck at times, when you look around for what you want, what you think you need, and realise it is not going to happen.
It is like that pre mobile phone, and breakdown cover age, when I broke down on my scooter, somewhere close to the borders of Wales.
What could I do, after realising I could not push it all that far over those hills I did the only thing I could, abandoned it and started walking toward any farmhouse in the vicinity.
Well these days I have full breakdown cover and a mobile phone. With my land rover I need them :)
Would that the same were available for the rest of my life.
Tuesday, May 16, 2006
The Past is a Foreign Country, they do things differently there ...
I am sometimes asked if I think my life would have been different had I been diagnosed earlier.
Well allowing a certain theatrical suspension of disbelief and assuming that my present diagnosis had been available before I went to secondary school the answer is yes, life would have been different. Better? I don't know.
To begin with, I don't think up till my teens I would have had any problem with acknowledging the diagnosis but I do think a certain inevitable learned helplessness would have come with it. I think I would have felt constrained within it, less than I feel myself to be now growing up with disabled imagery in my mind.
That would have to be seen as a trade off against what accommodations might have helped me.
On the whole I don't have any real complaints about my Junior school, I think most of my teachers (with some exceptions) understood me well enough as against my brother who at one stage was considered "retarded".
Secondary school though was the problem. At the same time given that home schooling would not have been a realistic possibility, I don't think a special school would have been any good for me either.
Certain things would have been inevitable, even with a strong anti bullying policy in force bullying would have been inevitable because of the whole culture of those times and my ill fit to it. Without changing the whole basis of society I would have still suffered wherever I went.
I might have got a bit more understanding in lessons though, even so eventually teachers including the headmaster got to see I was a very determined individual who would go his own way no matter what.
What would have helped perhaps is to have been given more time to complete my "O" levels, and to have had the opportunity to sample and change courses from those that I had been railroaded into. If I had taken fewer "O" levels at 16 and taken more time, and then taken the rest at 18 say, along with a bit of specialist tuition for dyslexia, and the sort of concessions I get in exams now, I might have got better grades. As it is, I did not do so bad, for even my lowest exam grades are actually held equivalent to grades A to C in the GCSE exams that have succeeded the system I took.
I think I should not have rushed to University at all costs, that was a mistake, although I gained much from it and enjoyed those years, I was neither socially ready, nor academically suited to the course I took, and under normal circumstances with my results, and if I had been interviewed properly would never have got in.
Having been through the University applications process again recently I can see that.
Well stepping back, in an ideal world, the whole exam structure suited me not, but unbelievably those "O" levels still matter today so it is as well I have them.
I think I would have done better if I had taken my "A" levels at a further education college, like the ones I have been studying at more recently. Even so in the full knowledge of my AS I still don't find it easy at that level because the curricula and the examination system suit me no better now than they ever did. However with less pressure than at school, none of the petty restrictions I rebelled against, and a somewhat more adult ethos, I might have done better, particularly had I taken an access course as a route to Uni (as I subsequently did a few years ago)
Whether I would have been ready for Uni then I don't know, I am about to tackle a degree course by distance learning in September and hope I am ready for it now. However in spite of the fact that I don't think the learning method is the best for me, at least the course so far as what I can see of it is. Like my HND in media, there are no exams.
Ok education apart what about the world of work, supposing I had graduated a few years later than I might have done straight out of school.
My biggest problem when I failed at Uni to begin with was knowing what to do with my life, perhaps if I had known about AS then I might have been able to plan that a little better, and if I had have got a good degree then I might have had better choices, but lets face it, even with a diagnosis, the world of work is hostile, even with anti discrimination laws there are ways round them. I know full well with my diagnosis that the government employment service has been of no use to me, and has actually been harmful to me, and that in the future it will be no different.
No in the end I would still have been forced back on my own resources to sink or swim.
At some point this notional life with the advantage and concessions of diagnosis would have met this life where I am now, the paths would have converged and that yellow wood would become that impenetrable thicket I sometimes see ahead of me.
Well allowing a certain theatrical suspension of disbelief and assuming that my present diagnosis had been available before I went to secondary school the answer is yes, life would have been different. Better? I don't know.
To begin with, I don't think up till my teens I would have had any problem with acknowledging the diagnosis but I do think a certain inevitable learned helplessness would have come with it. I think I would have felt constrained within it, less than I feel myself to be now growing up with disabled imagery in my mind.
That would have to be seen as a trade off against what accommodations might have helped me.
On the whole I don't have any real complaints about my Junior school, I think most of my teachers (with some exceptions) understood me well enough as against my brother who at one stage was considered "retarded".
Secondary school though was the problem. At the same time given that home schooling would not have been a realistic possibility, I don't think a special school would have been any good for me either.
Certain things would have been inevitable, even with a strong anti bullying policy in force bullying would have been inevitable because of the whole culture of those times and my ill fit to it. Without changing the whole basis of society I would have still suffered wherever I went.
I might have got a bit more understanding in lessons though, even so eventually teachers including the headmaster got to see I was a very determined individual who would go his own way no matter what.
What would have helped perhaps is to have been given more time to complete my "O" levels, and to have had the opportunity to sample and change courses from those that I had been railroaded into. If I had taken fewer "O" levels at 16 and taken more time, and then taken the rest at 18 say, along with a bit of specialist tuition for dyslexia, and the sort of concessions I get in exams now, I might have got better grades. As it is, I did not do so bad, for even my lowest exam grades are actually held equivalent to grades A to C in the GCSE exams that have succeeded the system I took.
I think I should not have rushed to University at all costs, that was a mistake, although I gained much from it and enjoyed those years, I was neither socially ready, nor academically suited to the course I took, and under normal circumstances with my results, and if I had been interviewed properly would never have got in.
Having been through the University applications process again recently I can see that.
Well stepping back, in an ideal world, the whole exam structure suited me not, but unbelievably those "O" levels still matter today so it is as well I have them.
I think I would have done better if I had taken my "A" levels at a further education college, like the ones I have been studying at more recently. Even so in the full knowledge of my AS I still don't find it easy at that level because the curricula and the examination system suit me no better now than they ever did. However with less pressure than at school, none of the petty restrictions I rebelled against, and a somewhat more adult ethos, I might have done better, particularly had I taken an access course as a route to Uni (as I subsequently did a few years ago)
Whether I would have been ready for Uni then I don't know, I am about to tackle a degree course by distance learning in September and hope I am ready for it now. However in spite of the fact that I don't think the learning method is the best for me, at least the course so far as what I can see of it is. Like my HND in media, there are no exams.
Ok education apart what about the world of work, supposing I had graduated a few years later than I might have done straight out of school.
My biggest problem when I failed at Uni to begin with was knowing what to do with my life, perhaps if I had known about AS then I might have been able to plan that a little better, and if I had have got a good degree then I might have had better choices, but lets face it, even with a diagnosis, the world of work is hostile, even with anti discrimination laws there are ways round them. I know full well with my diagnosis that the government employment service has been of no use to me, and has actually been harmful to me, and that in the future it will be no different.
No in the end I would still have been forced back on my own resources to sink or swim.
At some point this notional life with the advantage and concessions of diagnosis would have met this life where I am now, the paths would have converged and that yellow wood would become that impenetrable thicket I sometimes see ahead of me.
Saturday, May 06, 2006
The relativity of autistic definition and appearance.
I am reminded of a somewhat trite aphorism which goes thus:
“Two prisoners looked out from the cell window, one saw bars the other stars”
Well it reminds me how two journalists describing the same report can give it a completely different slant as I read these two commentaries on the CDC report of the epidemiology of autism. Describing the same data set thus we get two different articles:
US survey shows autism very common
Autism Study Finds Increase in Cases
One article suggests autism is common, the other that it is increasing, both show the kind of rates that have long been suspected by Lorna Wing and Christopher Gillberg.
Now the CDC study on which the articles are based study seems to suggest there is a cultural bias prevalent in autism diagnosis. The study itself is one of the incidence of autism diagnosis in children not one of the prevalence in the general population, and so is in no way an indicator of how much autism is actually out there.
When autism first hit the medical dictionaries the skewed demographics of the diagnostics gave rise to false conclusions as well, e.g the refrigerator mother theory. To me it figures that to begin with that only rich parents who were well connected would have been able to have their children diagnosed. Since then and with the wider knowledge of Asperger's paper there has been diagnosis creep. Notwithstanding the greater degree of diagnosis that still has not penetrated ethnic and disadvantaged communities to the same extent as it has amongst those with more access to medical care and more interest in the western cultural episteme. We only have to look at the ridiculous assertions of epidemiologist Eric Fombonne who purports to have found no autism in the Inuit, to see that there are probably sound reasons why he did not find it, notwithstanding his own possible cultural blindness.
Anyway within the whole autistic upharsination debate I follow Tony Atwood's model of different trajectories; Diagnosis of Asperger's syndrome. I believe there are cultural and economic reasons why diagnosis does not reflect what is probably the genuine prevalence.
I would not say either as some do, that there is ever over diagnosis, only that some clinicians are more likely to diagnose at the margins than others being as autism shades imperceptibly into what e some call shadow syndromes or broader autism phenotype.
What autism is to me is a set of differences, probably neuro biological that govern the way we interpret the social, perceptual and sensory world. We are born with a different programme. Now because these differences as they develop involve social factors it is inevitable that at different times in different circumstances and in different cultures, that those differences are going to be either overlooked, alternatively explained or accepted in different ways, according to what is the norm, not just in terms of social interaction, but in terms of the interpretation of illness disability and difference too.
Autism is bound to be complicated by other factors that will alos affect the developmental trajectory. I do not believe anyone is ever "recovered" as the curebies have it but that they are simply helped along the way of a path that is already set (it is written as I am so fond of saying) I think my path was set from the beginning, however the way in which I have adapted into society and the ideologies I have developed have been very much dependent upon cultural and educational factors.
I default back to my pre autism knowledge division of people into convergent and divergent thinkers. Mine has been a divergent path of dissent, disagreement and scepticism. That is likely to do with my genetics as well as my upbringing, My brother who shares so many of my genes is similar in his outlook to me.
I think convergent thinking is more prevalent in any group and is indeed quite prevalent amongst “aspies”. Besides I think there is a whole meta psychology of reaction to diagnosis that in itself affects how one constructs self and interaction with the world based upon the models of disability one has absorbed growing up. I am different because I encountered radical models and so I react to my diagnosis and the whole medical field in those terms.
“Two prisoners looked out from the cell window, one saw bars the other stars”
Well it reminds me how two journalists describing the same report can give it a completely different slant as I read these two commentaries on the CDC report of the epidemiology of autism. Describing the same data set thus we get two different articles:
US survey shows autism very common
Autism Study Finds Increase in Cases
One article suggests autism is common, the other that it is increasing, both show the kind of rates that have long been suspected by Lorna Wing and Christopher Gillberg.
Now the CDC study on which the articles are based study seems to suggest there is a cultural bias prevalent in autism diagnosis. The study itself is one of the incidence of autism diagnosis in children not one of the prevalence in the general population, and so is in no way an indicator of how much autism is actually out there.
When autism first hit the medical dictionaries the skewed demographics of the diagnostics gave rise to false conclusions as well, e.g the refrigerator mother theory. To me it figures that to begin with that only rich parents who were well connected would have been able to have their children diagnosed. Since then and with the wider knowledge of Asperger's paper there has been diagnosis creep. Notwithstanding the greater degree of diagnosis that still has not penetrated ethnic and disadvantaged communities to the same extent as it has amongst those with more access to medical care and more interest in the western cultural episteme. We only have to look at the ridiculous assertions of epidemiologist Eric Fombonne who purports to have found no autism in the Inuit, to see that there are probably sound reasons why he did not find it, notwithstanding his own possible cultural blindness.
Anyway within the whole autistic upharsination debate I follow Tony Atwood's model of different trajectories; Diagnosis of Asperger's syndrome. I believe there are cultural and economic reasons why diagnosis does not reflect what is probably the genuine prevalence.
I would not say either as some do, that there is ever over diagnosis, only that some clinicians are more likely to diagnose at the margins than others being as autism shades imperceptibly into what e some call shadow syndromes or broader autism phenotype.
What autism is to me is a set of differences, probably neuro biological that govern the way we interpret the social, perceptual and sensory world. We are born with a different programme. Now because these differences as they develop involve social factors it is inevitable that at different times in different circumstances and in different cultures, that those differences are going to be either overlooked, alternatively explained or accepted in different ways, according to what is the norm, not just in terms of social interaction, but in terms of the interpretation of illness disability and difference too.
Autism is bound to be complicated by other factors that will alos affect the developmental trajectory. I do not believe anyone is ever "recovered" as the curebies have it but that they are simply helped along the way of a path that is already set (it is written as I am so fond of saying) I think my path was set from the beginning, however the way in which I have adapted into society and the ideologies I have developed have been very much dependent upon cultural and educational factors.
I default back to my pre autism knowledge division of people into convergent and divergent thinkers. Mine has been a divergent path of dissent, disagreement and scepticism. That is likely to do with my genetics as well as my upbringing, My brother who shares so many of my genes is similar in his outlook to me.
I think convergent thinking is more prevalent in any group and is indeed quite prevalent amongst “aspies”. Besides I think there is a whole meta psychology of reaction to diagnosis that in itself affects how one constructs self and interaction with the world based upon the models of disability one has absorbed growing up. I am different because I encountered radical models and so I react to my diagnosis and the whole medical field in those terms.
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