Though not quite in the Geoffrey Barnard sense though he wished he were.
For he has not been alltogether well for some time, though a lot of that is down to stress.
However now, and since returning from the Birmingham Autism study weekend it seems he has brought back more than he bargained for and is labouring under the mother of all sore throats, convinced as he has never been convinced, since the last time he were so belaboured (and not at all conservative about it) that he is not long for this world. Not that he thought he were that long for it before and now is even less long, clocks going forward notwithstanding.
So there you have it, he is idling away and in a way at least, (or not so long) enforced into restation for restitutions sake. (forced to rest as lesser mortals and those who are not George Dubya would have it)
So that is why I have not blogged or blagged and so have sagged, the sagacity and sargassoty thereof hereunto subscribed.
In other words, practically everything will have to wait until I throw this off, then perhaps I can go back to being even less long for this world, the interval having passed away as surely as a ship of fools in the night and fog of dreary existence.
Tuesday, March 27, 2007
Friday, March 16, 2007
Update
First of all which is untypical for me, I need to thank all of you who have given me practical support through my current crisis
I feel the need to keep you all informed as to where I am at.
I am still bearing an enormous amount of stress which is fighting against my mind to shut down my body. Still waiting to see the shrink and in the meantime have required a referral back to the neurologist as certain symptoms that were not apparent on the last tests have worsened in the meantime. The fight with my GP's the length of time I have had to wait for appointments and then the length of time I have to wait for the hospital does not help. I am due to see the shrink in April sometime (date unknown) and the neurologist in May, in the meantime I will be having an operation at some unspecified time in April complicating matters.
Through all of that I owe to everybody to complete my current terms work at Uni, which I am getting on with now, and complete next terms to graduate at the end of this year.
I have to accept now, financially there is no next year to complete an MeD it cannot be done and I have to gracefully accept that for the time being I will leave with a PGCertspED
I have great hopes of going on to a PhD and right now in the midst of all my stresses I am discussing this with all and sundry even having some of my ideas critically challenged before I start.
My worry is that I might still fall foul of the no first degree tick box formality, which is why I need to get the support first so that whoever looks at this points out that I can be trusted to have the capability.
I have also for my sins started an adult teaching course, which is about as NT as you can get, and is stressing me with group work and work in pairs. It is like jumping through a hoop of fire for me, that it seems I have to go through these kinds of gauntlets to get the formal qualifications that then allow me do and design things in an autistic friendly way or to teach others why what I have been taught is not universal.
I hope I do not collapse before I get to my objectives and that in September I have a clearer road ahead of me than the one I see now tangled with briars.
I need to be superhuman to overcome the anxiety with no damage to me, but I am not. My voice is hoarse from yelling at the phone this morning trying to get through to the hospital which requires you to do things in a most autistic unfriendly way.
You see I have a mission, I have always had a mission which drives me. I believe I can, given the right tools, the right accesses take on the things that researchers mostly refuse because they are not easy, and don't get your name in academic lights in the same way that the more orthodox but essentially empty cognitive or genetic research gets you because it is still "sexy"
I want my research to do something for Autism, to alter the way it is thought about in the professions who have to deal with it.
Above as an autistic it is my duty to do that, to show that we are central to this whole process. The processes of science and medicine which created us have turned us into the Frankenstein Monster who wants a piece of the action.
I just hope I can survive it all and don't end up fleeing from the peasants to end my life on a lonely iceberg.
I feel the need to keep you all informed as to where I am at.
I am still bearing an enormous amount of stress which is fighting against my mind to shut down my body. Still waiting to see the shrink and in the meantime have required a referral back to the neurologist as certain symptoms that were not apparent on the last tests have worsened in the meantime. The fight with my GP's the length of time I have had to wait for appointments and then the length of time I have to wait for the hospital does not help. I am due to see the shrink in April sometime (date unknown) and the neurologist in May, in the meantime I will be having an operation at some unspecified time in April complicating matters.
Through all of that I owe to everybody to complete my current terms work at Uni, which I am getting on with now, and complete next terms to graduate at the end of this year.
I have to accept now, financially there is no next year to complete an MeD it cannot be done and I have to gracefully accept that for the time being I will leave with a PGCertspED
I have great hopes of going on to a PhD and right now in the midst of all my stresses I am discussing this with all and sundry even having some of my ideas critically challenged before I start.
My worry is that I might still fall foul of the no first degree tick box formality, which is why I need to get the support first so that whoever looks at this points out that I can be trusted to have the capability.
I have also for my sins started an adult teaching course, which is about as NT as you can get, and is stressing me with group work and work in pairs. It is like jumping through a hoop of fire for me, that it seems I have to go through these kinds of gauntlets to get the formal qualifications that then allow me do and design things in an autistic friendly way or to teach others why what I have been taught is not universal.
I hope I do not collapse before I get to my objectives and that in September I have a clearer road ahead of me than the one I see now tangled with briars.
I need to be superhuman to overcome the anxiety with no damage to me, but I am not. My voice is hoarse from yelling at the phone this morning trying to get through to the hospital which requires you to do things in a most autistic unfriendly way.
You see I have a mission, I have always had a mission which drives me. I believe I can, given the right tools, the right accesses take on the things that researchers mostly refuse because they are not easy, and don't get your name in academic lights in the same way that the more orthodox but essentially empty cognitive or genetic research gets you because it is still "sexy"
I want my research to do something for Autism, to alter the way it is thought about in the professions who have to deal with it.
Above as an autistic it is my duty to do that, to show that we are central to this whole process. The processes of science and medicine which created us have turned us into the Frankenstein Monster who wants a piece of the action.
I just hope I can survive it all and don't end up fleeing from the peasants to end my life on a lonely iceberg.
Saturday, March 03, 2007
eli'asch 'tach't
What to write, what to right?
I have a plan so cunning I could stick a tail on it and call it a weasel.
I know what I have to do, and that is my course but apart from getting back on the academic rails, I have to make complaints about my GP surgery and the entire system that writes one off when one reaches a certain age.
I don't really like complaining because it does not make it any easier for me, but when one has been forced into the corner and there is no where else to go, then you come out fighting even if you bear bruises of it.
It took from 2001 to 2007 to get my left arm operated on, from when my left hand first went AWOL to it being "fixed" and I still await the op on the other arm.
But then in 2004 my left foot started showing the same signs, and just because it was ok when I had the nerve function tests that decided for them that my hands needed sorting, is no reason to believe it is still alright now at the end of the GP's financial year when they want to budget for more tests.
What to do,? shoot oneself in the foot, then they'd have to fix it wouldn't they!!!? Well maybe complaining is the metaphorical equivalent of so doing but after that I wouldn't count on much support from any of my GP's.
Well do I really want to see my medical records? (the ones that have not vanished that is) That is what I am going to have to do, to get it sorted I suppose.
At least I have got my benefit back till 2012 unless I "recover" in the meantime, and you can bet between now and the reform of the benefits system they will have another go to push me off it. That's one less thing to fight.
Who knows though I might not need it if I become a millionaire media mogul in the meantime, or the next vice Chancellor or Birmingham University cos I tell you now after my GP him and his whole crew are the next to go.
I have a little list ..........
Thursday, March 01, 2007
Not out of the Woods yet
Todays lesson is taken from the book of Job 1 vs 10 - 11
Well will I ever see my way through to the shining city on the hill?
If you want to help, follow the link and order your DVD's of "whichever way" off the NAS and give them to your librarie, otherwise there is no demand and it will never be repeated.
No-one wants a post modernist autist intertextual intellectual
Hast not thou made an hedge about him, and about his house,For far from the beaten track in my autistic offroad I have taken the fork that leads to the thicket and so thickly embedded am I that there is no wood save only trees.
and about all that he hath on every side? thou hast blessed
the work of his hands, and his substance is increased in the
land.
But put forth thine hand now, and touch all that he hath, and
he will curse thee to thy face.
Hedged against the hordes of Hell
I would to well, not to tell.
To tear out my traitor tongue.
My hands I ought to mangle.
I should never wrangle
Behemoth
Nor tackle with the Leviathan of legislation
Source and tributory of tribulation.
Confabulation!
They twist my words to lies.
They lay down when it is not done
What I would really have for all
And not for I alone.
Behind my back, the attack
The talking, smirking
"What is wrong with him, that he should protest so loud."
"Hey you get offa my cloud"
With clouded judgements, muffled minds
Enfogged in self attachment
Never witness to the far sight of the unsightly
Rightly encumbered only in what they clothe themselves.
To hell if you are naked, freezing in there scorn
They would rather that you had never been born
Ignore us all, build up that wall,
I should never walk that tall
That my head is taken off above the parapet.
Well will I ever see my way through to the shining city on the hill?
If you want to help, follow the link and order your DVD's of "whichever way" off the NAS and give them to your librarie, otherwise there is no demand and it will never be repeated.
No-one wants a post modernist autist intertextual intellectual
Monday, February 19, 2007
The remains of the day.
Well I started off the day in hot blood I suppose not knowing what was next.
At the end of the day I have time to reflect and realise that I owe 1000 pounds and that is that, if I don’t pay I don’t graduate.
It all goes back to when mum died, in terms of risk taking. I have been faced with various risky strategies since then. The first was to become self employed. I drifted into that without a business plan or any firm idea of how I was going to do it, because I felt it was a now or never thing.
If I had planned it properly I would have ended up with much less and huge debts as the price of failure. The price of success if I had done it properly might have been much more rewarding so that I would be comfortable now.
But I gambled what I had and lost.
The next gamble was after I returned to education. Initially all I had wanted was some paper qualifications to make me a bit more attractive as an employee in the photographic or graphics industry but the discovery of new talents led me on.
Applying for the HND was a risk because when I started I had no way of funding it either. I got lucky this time, but I was not able to get that gold standard a full degree as by that time the funding for the course itself which had intended to round off the HND with an externally validated degree was not there let alone the funding for me to do that, so I stuck it out doing lower courses whilst I waited for that to happen.
The next risk was studying at Birmingham University for the CertHE in autistic spectrum disorders. It was a risk because I started that at the same time as I was finishing my HND something Birmingham initially was not prepared to do but relented when I convinced them I was capable. Although it was not as much money as the course is now, I ended up over the two years paying over 1000 GBP for the qualification which again was a risk.
My mistake was putting off my desire to get a full degree until this year, as I was ticking along with an A level and an AS level to keep me busy whilst the fees took an enormous hike.
The risk was last year to apply regardless of the fees as it was now or never at this point in my life.
I then had a variety of options to get a degree.
A three year conventional honours course, with 3 years of fees and full time study meaning I would not be able to claim income support.
Or a two year course building upon my existing qualification in ASD’s with two years of fees, but partly mitigated by a grant of 750 GBP and a 250 GBP book grant.
Now I have found a different option through a loop hole in the regulations whereby I have skipped the first degree entirely and gone straight to post grad, to qualify initially at the end of this year with a PGCert and after two years with a PGDip or full MEd.
This is my stumbling block because that necessitates paying back the 250 GBP book grant, and paying the 750 GBP that I am no longer entitled to, that is the upshot of what I have discovered today as a bolt from the blue, not realising that I would have to do either of those things when I made such an eloquent argument to study at the higher level, I believed I was and am proving capable of.
So at the end of the day, what is the cost benefit analysis of it all?
If I don’t pay up by June 1st I will not even graduate with a PGCert, and if I don’t do that, I still won’t have a first degree and nothing to recommend me for anything higher in the future. So I have to do it, and will end the year in debt, therefore I will not be able to afford to take out a loan to fund going on next year.
That is the loss. The benefit is that if I pay up and accept the debt (it might already be too late not to pay as I am legally liable) I will at least have a PGCert to my name.
That is after one year of study and if I had gone through the three year standard first degree option I would not get there for another four years.
If I had stuck with the two year BPhil option It would take me three years to get to the stage I will be at, which would have meant paying next years fees and paying the fees for a PGCert after that.
So at the end of the day if I keep going I get my PGCert at less cost than it would take me if I had to have studied for a first degree inbetween.
And what is the fourth option? The only option I think that does remain now is to go full out for a research PhD next year with funding. I could do a PhD in record time I know that, but I will probably have to wait on the funding before I do and hope I do not grow too old and addled in my brains in the meantime.
Oh and for your entertainment another video. By appointment to the NAS as it were.
At the end of the day I have time to reflect and realise that I owe 1000 pounds and that is that, if I don’t pay I don’t graduate.
It all goes back to when mum died, in terms of risk taking. I have been faced with various risky strategies since then. The first was to become self employed. I drifted into that without a business plan or any firm idea of how I was going to do it, because I felt it was a now or never thing.
If I had planned it properly I would have ended up with much less and huge debts as the price of failure. The price of success if I had done it properly might have been much more rewarding so that I would be comfortable now.
But I gambled what I had and lost.
The next gamble was after I returned to education. Initially all I had wanted was some paper qualifications to make me a bit more attractive as an employee in the photographic or graphics industry but the discovery of new talents led me on.
Applying for the HND was a risk because when I started I had no way of funding it either. I got lucky this time, but I was not able to get that gold standard a full degree as by that time the funding for the course itself which had intended to round off the HND with an externally validated degree was not there let alone the funding for me to do that, so I stuck it out doing lower courses whilst I waited for that to happen.
The next risk was studying at Birmingham University for the CertHE in autistic spectrum disorders. It was a risk because I started that at the same time as I was finishing my HND something Birmingham initially was not prepared to do but relented when I convinced them I was capable. Although it was not as much money as the course is now, I ended up over the two years paying over 1000 GBP for the qualification which again was a risk.
My mistake was putting off my desire to get a full degree until this year, as I was ticking along with an A level and an AS level to keep me busy whilst the fees took an enormous hike.
The risk was last year to apply regardless of the fees as it was now or never at this point in my life.
I then had a variety of options to get a degree.
A three year conventional honours course, with 3 years of fees and full time study meaning I would not be able to claim income support.
Or a two year course building upon my existing qualification in ASD’s with two years of fees, but partly mitigated by a grant of 750 GBP and a 250 GBP book grant.
Now I have found a different option through a loop hole in the regulations whereby I have skipped the first degree entirely and gone straight to post grad, to qualify initially at the end of this year with a PGCert and after two years with a PGDip or full MEd.
This is my stumbling block because that necessitates paying back the 250 GBP book grant, and paying the 750 GBP that I am no longer entitled to, that is the upshot of what I have discovered today as a bolt from the blue, not realising that I would have to do either of those things when I made such an eloquent argument to study at the higher level, I believed I was and am proving capable of.
So at the end of the day, what is the cost benefit analysis of it all?
If I don’t pay up by June 1st I will not even graduate with a PGCert, and if I don’t do that, I still won’t have a first degree and nothing to recommend me for anything higher in the future. So I have to do it, and will end the year in debt, therefore I will not be able to afford to take out a loan to fund going on next year.
That is the loss. The benefit is that if I pay up and accept the debt (it might already be too late not to pay as I am legally liable) I will at least have a PGCert to my name.
That is after one year of study and if I had gone through the three year standard first degree option I would not get there for another four years.
If I had stuck with the two year BPhil option It would take me three years to get to the stage I will be at, which would have meant paying next years fees and paying the fees for a PGCert after that.
So at the end of the day if I keep going I get my PGCert at less cost than it would take me if I had to have studied for a first degree inbetween.
And what is the fourth option? The only option I think that does remain now is to go full out for a research PhD next year with funding. I could do a PhD in record time I know that, but I will probably have to wait on the funding before I do and hope I do not grow too old and addled in my brains in the meantime.
Oh and for your entertainment another video. By appointment to the NAS as it were.
One morning in the life of an advocate
I got up today hoping this would be like any other morning and I could settle down to some more reading (I have at last got hold of Grinkers book) and writing of a University Essay
As is usual I check my email and the autism alerts and it seems this one is breaking out all over the place at the moment.
Well I can't let it go, so this is what I do.
I phone one of the professors who commented in the report and leave my comments with his secretary. I email the NAS press office and phone them as soon as someone is in, and learn that they have already put out a response (bad news as I had not got any comment in first) however it was not picked up by the press since the main story broke over the weekend and they got all the quotes they wanted.
I phone the BBC and cannot access there newsdesk (they like to keep the public at arms length these days)
And finally before so much as shaving or cleaning my teeth and still in my dressing gown I formulate and send email response to the journal Nature Genetics citing Gernsbacher's recent piece in the APA observer (face of the moment it seems), which I copy to all and sundry including the BBC and the NAS, making sure in the meantime the rest of the NAS Council knows what I am up to via there mailing list.
Is it worth it ?
Oh well if we are to be eliminated by targeted gene therapy I might as well forestall them like the chap in this fictional video, it would keep John Best happy at least.
Now I have some "real" work to do
As is usual I check my email and the autism alerts and it seems this one is breaking out all over the place at the moment.
Well I can't let it go, so this is what I do.
I phone one of the professors who commented in the report and leave my comments with his secretary. I email the NAS press office and phone them as soon as someone is in, and learn that they have already put out a response (bad news as I had not got any comment in first) however it was not picked up by the press since the main story broke over the weekend and they got all the quotes they wanted.
I phone the BBC and cannot access there newsdesk (they like to keep the public at arms length these days)
And finally before so much as shaving or cleaning my teeth and still in my dressing gown I formulate and send email response to the journal Nature Genetics citing Gernsbacher's recent piece in the APA observer (face of the moment it seems), which I copy to all and sundry including the BBC and the NAS, making sure in the meantime the rest of the NAS Council knows what I am up to via there mailing list.
Is it worth it ?
Oh well if we are to be eliminated by targeted gene therapy I might as well forestall them like the chap in this fictional video, it would keep John Best happy at least.
Now I have some "real" work to do
Monday, February 12, 2007
A little light relief
To be honest I am sick to death of the Autism Hub
Well to be honest I am sick to death of just about everything lately.
Here is a little light relief recorded on my digital camera tonight, not the best recording quality, but here is my "kitchen" yamaha junk shop flute, and my 200 year old Richard Potter flute for comparison.
And here I am in the woods enjoying myself in a time very different from this one.
So leave me alone world all I want to do is to be.
Well to be honest I am sick to death of just about everything lately.
Here is a little light relief recorded on my digital camera tonight, not the best recording quality, but here is my "kitchen" yamaha junk shop flute, and my 200 year old Richard Potter flute for comparison.
And here I am in the woods enjoying myself in a time very different from this one.
So leave me alone world all I want to do is to be.
Friday, February 09, 2007
Autist Flautist
Well I have been promising this for some time.
Here the ageing hippy makes an exhibition of himself and waggles his toes at all and sundry.
The band in the background is Steam Radio
I have not seen this controversial footage of Amanda playing that John Best seems to be getting his knickers in a twist about so I have the proverbial no comment to make on that.
So here I am, as I was last summer. I wish it were summer now
The link for those with dodgy browsers http://www.youtube.com/watch?v=jJh0sh1w9qA
Tuesday, February 06, 2007
Help, Blogger problems
My big problem started when I was forced to migrate to the new e blogger and create a google account, something I did not want to do because of what I have read of others having difficulties.
To begin with it posted an error message saying it could not migrate me over to new blogger, so I guess I am in limbo at the moment, signing in with my unwanted google account presumably to continue on the old blogger.
However that is not the worst of it, I am filling this in, with IE6 right now, because ever since I created a google account, firefox loops the sign in page.
Been having problems with firefox and blogs that require that silly word verification as it either does not show up or if it does I can't write my comment anyway.
Having similar problems with Opera.
So is this a google microsoft conspiracy to force us back onto IE because the java (or is it java script) won't work with e blogger, and why do they not warn us about it.
Mores to the point, this is a chronic problem not just with e blogger in firefox as a lot of other sites fail too, so this time it is Mozillas fault, isn't it about time we had an update that works properly?
I recently upgraded to IE7, big mistake, had to uninstall it, it is the worst browser interface I have ever seen, never mind that it slowed my laptop back down to a 486 crawl in loading screens.
Advice gratefully recieved.
To begin with it posted an error message saying it could not migrate me over to new blogger, so I guess I am in limbo at the moment, signing in with my unwanted google account presumably to continue on the old blogger.
However that is not the worst of it, I am filling this in, with IE6 right now, because ever since I created a google account, firefox loops the sign in page.
Been having problems with firefox and blogs that require that silly word verification as it either does not show up or if it does I can't write my comment anyway.
Having similar problems with Opera.
So is this a google microsoft conspiracy to force us back onto IE because the java (or is it java script) won't work with e blogger, and why do they not warn us about it.
Mores to the point, this is a chronic problem not just with e blogger in firefox as a lot of other sites fail too, so this time it is Mozillas fault, isn't it about time we had an update that works properly?
I recently upgraded to IE7, big mistake, had to uninstall it, it is the worst browser interface I have ever seen, never mind that it slowed my laptop back down to a 486 crawl in loading screens.
Advice gratefully recieved.
Saturday, February 03, 2007
And now for something completely different
My first venture into Youtube
I don't expect people to make sense of it, because it is me, and the sense is that which I experience, and if you experience the video, then you get just a little bit closer to me and my world.
So stuff your science and your ranting
Stuff your pious sycophanting
I don't care what you will say
I will go on in my way
And if that ain't what you like
I would tell you "on your bike"
This is what I've done for free
And it is not easy, see!!
This is actually part of a grand project that has been going on since 2001 when I started filming and editing it. A draft version was completed for my HND course for which I got distinction.
Another segment of the larger work, I showed at the NAS international conference in 2005 and amongst the audience was Temple Grandin, I expect she was as puzzled as you are :)
And for those who can't see this in blogger here is the youtube link http://www.youtube.com/watch?v=YO-VEXg2K0Q
Friday, January 26, 2007
Autism, it's not what you think, it's how you do.
In 1944 Gunnar Myrdal stated in "An American dilemma, The negro problem and modern democracy"
I borrow this freely from Stephen Jay Gould though it is set down elsewhere, for Gould sets out in the mismeasure of man examples of how the contemporary notions of racial stereotypes and superiority directly influenced the science of the day, and from that perspective the notions of the Creationists and the Darwinists were completely in agreement. Science produced “facts” that Women and Black races had smaller brains, and more ape like features.
The statistics of such renowned scientists as Broca "proved" it, so did the observations of such medical taxonomists as John Langdon Down, and even Darwin himself was in on the act.
Gould shows how easily data is misinterpreted by prior bias, and re-interpreted to when it suits to produce the opposite argument when suddenly refuted, that being the tenacity of a scientist toward their original notion, that the will find ever more complex perversions to explain what ought in scientific terms to be a sinking ship.
Bruno Latour a philosopher and sociologist as well as a historian of science gives many examples of the way in which facts are in reality nothing but a consensus produced by complex processes of human endeavour that have little to do with pure empiricism.
Thomas Kuhn gives us the notion of paradigm shift, and if we want to see all of this sociology in practice we can observe the ding dongs of the pro and anti mercury theorists each of whom miss the practical and most important part of autism.
Never mind the bollox we are here and what is to be done? Many a good omelette is made by first breaking eggs and I would like to break the egg heads on both sides who divert themselves with arguments that have no place beyond establishing how many angels can dance on the head of a pin.
Autism is firmly located as a Sociological phenomenon within a wider discourse of disability and the very science that purports to define and reify this phenomenon is flawed because it is predicated not upon what is practical but upon the notions of autism being an affront to parenthood and the American way of life, from Kanner onwards through the perversions of both Bettelheim and Rimland in turn.
In others eyes it is more Bob the Builder “can we fix it, yes we can” than Thomas the Tank Engine. Thomas runs on rails, but that is not all that determines the course that Thomas takes, it is a complex interplay of engineering, signalling and the social function of the railways that is reified in Awdry's parables.
I would like to refer to the pragmatics of establishing autism as just part of the human condition that has to be accommodated for in the same way as dyslexia, and the other neuro diversities.
Nobody these days would contend that dyslexia can be cured by chelation or neuroleptics.
No the mainstream realises it is a developmental condition that can be ameliorated to the extent with which each individual has the innate capacity, and that perhaps different educational styles are necessary to come to terms with this very post literate phenomenon.
I have been saying the why and wherefores by which we have come to label autism in the latter half of the twentieth century and how it could not have happened before that because of the dubious cultural “advances” in society and the creation of disorders tied closely into the historical development of medicine and pedagogy. It seems that you don’t just have to take it from me any longer as Majia Nadesan has published much the same notions ahead of my conclusions.
Touché
"A handful of social and biological scientists over the last fifty years have gradually forced informed people to give up some of the more blatant of our biological errors, but there can still be countless errors of the same sort that no living man can yet detect, because of the fog in which our type Western culture envelops us. Cultural influences have set up the assumptions about the mind, the body and the universe with which we begin; pose the questions we ask; influence the facts we seek; determine the interpretation we give these facts and direct our action to these interpretations and conclusions."
I borrow this freely from Stephen Jay Gould though it is set down elsewhere, for Gould sets out in the mismeasure of man examples of how the contemporary notions of racial stereotypes and superiority directly influenced the science of the day, and from that perspective the notions of the Creationists and the Darwinists were completely in agreement. Science produced “facts” that Women and Black races had smaller brains, and more ape like features.
The statistics of such renowned scientists as Broca "proved" it, so did the observations of such medical taxonomists as John Langdon Down, and even Darwin himself was in on the act.
Gould shows how easily data is misinterpreted by prior bias, and re-interpreted to when it suits to produce the opposite argument when suddenly refuted, that being the tenacity of a scientist toward their original notion, that the will find ever more complex perversions to explain what ought in scientific terms to be a sinking ship.
Bruno Latour a philosopher and sociologist as well as a historian of science gives many examples of the way in which facts are in reality nothing but a consensus produced by complex processes of human endeavour that have little to do with pure empiricism.
Thomas Kuhn gives us the notion of paradigm shift, and if we want to see all of this sociology in practice we can observe the ding dongs of the pro and anti mercury theorists each of whom miss the practical and most important part of autism.
Never mind the bollox we are here and what is to be done? Many a good omelette is made by first breaking eggs and I would like to break the egg heads on both sides who divert themselves with arguments that have no place beyond establishing how many angels can dance on the head of a pin.
Autism is firmly located as a Sociological phenomenon within a wider discourse of disability and the very science that purports to define and reify this phenomenon is flawed because it is predicated not upon what is practical but upon the notions of autism being an affront to parenthood and the American way of life, from Kanner onwards through the perversions of both Bettelheim and Rimland in turn.
In others eyes it is more Bob the Builder “can we fix it, yes we can” than Thomas the Tank Engine. Thomas runs on rails, but that is not all that determines the course that Thomas takes, it is a complex interplay of engineering, signalling and the social function of the railways that is reified in Awdry's parables.
I would like to refer to the pragmatics of establishing autism as just part of the human condition that has to be accommodated for in the same way as dyslexia, and the other neuro diversities.
Nobody these days would contend that dyslexia can be cured by chelation or neuroleptics.
No the mainstream realises it is a developmental condition that can be ameliorated to the extent with which each individual has the innate capacity, and that perhaps different educational styles are necessary to come to terms with this very post literate phenomenon.
I have been saying the why and wherefores by which we have come to label autism in the latter half of the twentieth century and how it could not have happened before that because of the dubious cultural “advances” in society and the creation of disorders tied closely into the historical development of medicine and pedagogy. It seems that you don’t just have to take it from me any longer as Majia Nadesan has published much the same notions ahead of my conclusions.
Touché
Monday, January 15, 2007
Worse than Cancer
Well the good news is, that I do not have Cancer (yet)
And so for those who say that autism is worse than cancer, I can tell you which I prefer, and for those who want to witter on about the agonies of having a live coal burning within ones bowels, well that is dramatic speech, but heck I would rather that than it turn out to be cancer. So ok there may not be rivers of diarrhoea that I have to tip out of my wellies (it is wellie weather round here) cos I can get to the toilet in time, but I tell yer now I can give you a bucketfull of crap, well don't the mercurians give us that and more :)
No the fact that I am a little longer for this world than was my estimation a week ago waiting for test results only improves my disposition so much as I am still contending with that anomaly of being an autistic in a social world where it is not recognised.
I am damned for my "black and white" thinking and my unsubtle approach to trying to get people (and if you are reading this you know who you are) to sign this petition
http://www.autism-hub.co.uk/nih-response/
Well perhaps I am the rudest autist in existence, Temple Grandin seems to think so, and that encounter is not one to be repeated
But you see I have other problems and dilemmas to deal with, because if I were not where I am and I did not have these autistic traits that seem to give me aggro, then would I truly deserve to be there cos I would not be autistic enough would I? The old catch 22.
Laurentius the polymath, the pleonastic, who would twist Derrida and Sartre in linguistic knots when it comes down to it, when he needs to, finds that speech dissolving, he struggles to communicate over a phone and certainly speaks a grammar Chomsky would appreciate as a little less than Pidgin (not that he would have them crapping on his landing as I do) phone in one hand tother left a flappering.
I might have an extension on life being as my gut problem is not terminal but I might not be so long in this world of internet discourse as I am currently in deep shit with the benefits system in the UK. My doctor without my knowing replied to a questionnaire from the "jobcentre" and though that was full enough of much else besides autism as has caused me to be a regular at the surgery or emergency room, it's still not enough for the system who still can't categorise autism aright.
Oh yeah and if you check out the link to this blog, Bert Massie is an old mucker of mine. We go back a long ways together.
And so for those who say that autism is worse than cancer, I can tell you which I prefer, and for those who want to witter on about the agonies of having a live coal burning within ones bowels, well that is dramatic speech, but heck I would rather that than it turn out to be cancer. So ok there may not be rivers of diarrhoea that I have to tip out of my wellies (it is wellie weather round here) cos I can get to the toilet in time, but I tell yer now I can give you a bucketfull of crap, well don't the mercurians give us that and more :)
No the fact that I am a little longer for this world than was my estimation a week ago waiting for test results only improves my disposition so much as I am still contending with that anomaly of being an autistic in a social world where it is not recognised.
I am damned for my "black and white" thinking and my unsubtle approach to trying to get people (and if you are reading this you know who you are) to sign this petition
http://www.autism-hub.co.uk/nih-response/
Well perhaps I am the rudest autist in existence, Temple Grandin seems to think so, and that encounter is not one to be repeated
But you see I have other problems and dilemmas to deal with, because if I were not where I am and I did not have these autistic traits that seem to give me aggro, then would I truly deserve to be there cos I would not be autistic enough would I? The old catch 22.
Laurentius the polymath, the pleonastic, who would twist Derrida and Sartre in linguistic knots when it comes down to it, when he needs to, finds that speech dissolving, he struggles to communicate over a phone and certainly speaks a grammar Chomsky would appreciate as a little less than Pidgin (not that he would have them crapping on his landing as I do) phone in one hand tother left a flappering.
I might have an extension on life being as my gut problem is not terminal but I might not be so long in this world of internet discourse as I am currently in deep shit with the benefits system in the UK. My doctor without my knowing replied to a questionnaire from the "jobcentre" and though that was full enough of much else besides autism as has caused me to be a regular at the surgery or emergency room, it's still not enough for the system who still can't categorise autism aright.
Oh yeah and if you check out the link to this blog, Bert Massie is an old mucker of mine. We go back a long ways together.
Monday, January 08, 2007
Gone. and I didn't hear it fall.
I looked out my window and a tree was gone. It is the one to the left of this picture.I blame it on Global warming, for we get more storms now, so it is more likely that a tree will be declared unsafe, given the greater probability of it being blown down in high winds. But it cost more in energy to cut it down than it will repay as it was an old urban tree, not commercial timber, and I am an invader in it's territory that was originally farmland, where only sheep would have to worry.
I do not like change and it has upset me, added to my upsets as gradually everything around me changes eroding my stability. The blocks of flats in the picture have already gone, and in a couple of years mine will follow, not that I am altogether happy living here, it is cold and my flat is old, but at least it is peaceful and I enjoyed the view.
You can see why they cut it down in the picture below (on the left), as there was a hollow section at the bottom of the trunk, however in its natural habitat that would have been no threat. Next time you zoom off round the world in an aeroplane, consider there is one less tree to mitigate it's impact, you did not hear it fall, nor see it go, but it was there and now it is not.
Saturday, January 06, 2007
Actress & Composer's Daughter, Nikki Bacharach, Commits Suicide
"LOS ANGELES (Reuters) - The only child of pop songwriter Burt Bacharach and actress Angie Dickinson has committed suicide after a lifetime struggling with a form of autism, a spokeswoman for the former couple said on Friday. Nikki Bacharach, 40, died "quietly and peacefully" at her home in the northern Los Angeles municipality of Thousand Oaks on Thursday night, a statement said. "
I dread to think what impact this will have when the news breaks given the negative slant the Bacharachs have put on this through their press release.
I only hope there is time to combat the publicity, however this is a bad time to get the NAS to respond, I have informed the press office mobile, but that is on voice mail.
I doubt we will ever get the full picture of what this is about and I am sure there is more to it than AS, however it is the particularly curebie, mercurian, and utterly false statement regarding the "ravages" to ones brain that really perplexes
""She quietly and peacefully committed suicide to escape the ravages to her brain brought on by Asperger's," the statement said."
Autism does not ravage the brain, it is not a degenerative neurological condition on a par with Alzheimers, at the age of 50 I am succumbing the ravages of many things, but not my mental capacity which is intact enough to still be pursuing post graduate studies.
We will likely never know the real story behind, this or personal details of whatever difficulties Nikki was going through, but whatever they were, Asperger's syndrome was not the cause, but the responses of those around her to their own negative perceptions of it.
Well it has taught me a lesson anyway, not to commit suicide (which is just as well considering my low mood lately), because no matter why I do, it will be reported badly. Pity really because all the negative statements we are going to get make it more likely that someone else will!
Oh yeah thanks to Jypsy for the heads up on this ...
I dread to think what impact this will have when the news breaks given the negative slant the Bacharachs have put on this through their press release.
I only hope there is time to combat the publicity, however this is a bad time to get the NAS to respond, I have informed the press office mobile, but that is on voice mail.
I doubt we will ever get the full picture of what this is about and I am sure there is more to it than AS, however it is the particularly curebie, mercurian, and utterly false statement regarding the "ravages" to ones brain that really perplexes
""She quietly and peacefully committed suicide to escape the ravages to her brain brought on by Asperger's," the statement said."
Autism does not ravage the brain, it is not a degenerative neurological condition on a par with Alzheimers, at the age of 50 I am succumbing the ravages of many things, but not my mental capacity which is intact enough to still be pursuing post graduate studies.
We will likely never know the real story behind, this or personal details of whatever difficulties Nikki was going through, but whatever they were, Asperger's syndrome was not the cause, but the responses of those around her to their own negative perceptions of it.
Well it has taught me a lesson anyway, not to commit suicide (which is just as well considering my low mood lately), because no matter why I do, it will be reported badly. Pity really because all the negative statements we are going to get make it more likely that someone else will!
Oh yeah thanks to Jypsy for the heads up on this ...
Wednesday, January 03, 2007
Festschrift
I have just returned from the august portals of the Royal Society no less, that bastion of the scientific establishment, where a conference was being held in honour of Uta Frith who is retiring.
I may be a fellow of a "rival" royal society myself but not one of that particular pedigree, my bunch being Johnny come latelies in comparison (though I could be shot for saying so) contaminated by the arts and manufacture as we are :)
I have to admit , that the scorpion has not yet lost his sting and although I did not engage in the sort of vehement argument I did at the NAS, I still felt compelled to tell some of the presenters who I disagreed with that they were doing bad science, because they were not sufficiently open or lateral in there thinking to realise how much cultural bias there was in their assumptions and there methodology too.
Not that I spent the whole time doing that at all, because I was only bothered with those who said things I fiercely disagreed with, not those who were not so relevant to autism as the conference covered dyslexia as well, and I am not well read up so far as the literature on dyslexia goes.
However I couldn’t let SBC get away without being told once again about the subjectivity problem with his AQ, SQ, and EQ tests, but one thing I was not able to do, because the chair wasn’t going to take my questions (is it any wonder I heckle when holding your hand up in the proper way does not guarantee parole) was to get him to publicly say something about the Geiers. However I did tackle him about it during the “networking” part of the conference during the break, and he mentioned reading what Kathleen Seidel had to say and assured me he will write something to deal with the way the Geiers are distorting his Foetal Testosterone theory.
Another thing I got out of the way, was to take the opportunity to have a conversation with Francesca Happé about her now notorious essay in Uta Friths autism and asperger syndrome book and to clear the air once and for all that she does not still hold to the ideas she represented then when autobiographies were few and far between and admitting to writing poetry could lose you your diagnosis.
Mind you it was be nice to Uta day, (well two days actually) as the whole shebang was as I have explained, to mark her retirement, and when I learnt that people had been giving her retirement gifts I decided to give her one of my own, which I admitted was a bit of an egocentric onet as it was a copy of my DVD “whichever way”
I had to be careful with the free wine at the reception, as I have been known to overindulge at conferences, and say things I very much regretted later. I don’t think I did this time, leastways nobody reproached me for it the next day as happened at the NAS international conference a year or so back.
All in all I was glad I went, and although it can be stressful for me, wanting to intervene all the time, and take some presentations apart, line by line, I was also there to enjoy and to learn.
Seriously for all there potential faults and failings (they can't help being NT after all) the researchers doing the presentations, all of whom had come under the influence or tutelage of Uta Frith at some time in their careers, seemed to be a very different bunch from the sort of fanatic stuff one gets from the MIND institute or Yale for that matter, certainly the mercury hypothesis gets short shrift, and there is no emotional talk of epidemics and Tsunami's. Too much talk of deficit and disorder for my liking but nothing I think Michelle Dawson would be uncomfortable with from the scientific perspective.
I have no idea, from the body of the conference other than those already in the know, that anyone would have considered my interjections came from a diagnosed perspective, I should think most people probably thought I was just being eccentric and individual in the best of British traditions. Who knows?
I may be a fellow of a "rival" royal society myself but not one of that particular pedigree, my bunch being Johnny come latelies in comparison (though I could be shot for saying so) contaminated by the arts and manufacture as we are :)
I have to admit , that the scorpion has not yet lost his sting and although I did not engage in the sort of vehement argument I did at the NAS, I still felt compelled to tell some of the presenters who I disagreed with that they were doing bad science, because they were not sufficiently open or lateral in there thinking to realise how much cultural bias there was in their assumptions and there methodology too.
Not that I spent the whole time doing that at all, because I was only bothered with those who said things I fiercely disagreed with, not those who were not so relevant to autism as the conference covered dyslexia as well, and I am not well read up so far as the literature on dyslexia goes.
However I couldn’t let SBC get away without being told once again about the subjectivity problem with his AQ, SQ, and EQ tests, but one thing I was not able to do, because the chair wasn’t going to take my questions (is it any wonder I heckle when holding your hand up in the proper way does not guarantee parole) was to get him to publicly say something about the Geiers. However I did tackle him about it during the “networking” part of the conference during the break, and he mentioned reading what Kathleen Seidel had to say and assured me he will write something to deal with the way the Geiers are distorting his Foetal Testosterone theory.
Another thing I got out of the way, was to take the opportunity to have a conversation with Francesca Happé about her now notorious essay in Uta Friths autism and asperger syndrome book and to clear the air once and for all that she does not still hold to the ideas she represented then when autobiographies were few and far between and admitting to writing poetry could lose you your diagnosis.
Mind you it was be nice to Uta day, (well two days actually) as the whole shebang was as I have explained, to mark her retirement, and when I learnt that people had been giving her retirement gifts I decided to give her one of my own, which I admitted was a bit of an egocentric onet as it was a copy of my DVD “whichever way”
I had to be careful with the free wine at the reception, as I have been known to overindulge at conferences, and say things I very much regretted later. I don’t think I did this time, leastways nobody reproached me for it the next day as happened at the NAS international conference a year or so back.
All in all I was glad I went, and although it can be stressful for me, wanting to intervene all the time, and take some presentations apart, line by line, I was also there to enjoy and to learn.
Seriously for all there potential faults and failings (they can't help being NT after all) the researchers doing the presentations, all of whom had come under the influence or tutelage of Uta Frith at some time in their careers, seemed to be a very different bunch from the sort of fanatic stuff one gets from the MIND institute or Yale for that matter, certainly the mercury hypothesis gets short shrift, and there is no emotional talk of epidemics and Tsunami's. Too much talk of deficit and disorder for my liking but nothing I think Michelle Dawson would be uncomfortable with from the scientific perspective.
I have no idea, from the body of the conference other than those already in the know, that anyone would have considered my interjections came from a diagnosed perspective, I should think most people probably thought I was just being eccentric and individual in the best of British traditions. Who knows?
Sunday, December 31, 2006
It's nearly over thank goodness
I am not looking forward to the new year, that is a meaningless instance to me, I am merely looking forward to the resumption of normality, when shops, banks and offices can be relied upon to be open when you expect them to be. When you do not have to put all manner of plans on hold because the rest of the world has descended into temporary madness.
Actually I am going away as soon as it gets back to normal, on autism business I suppose you might say as I am going to the Uta Frith Festschrift. After that I have some volunteer training to do. One needs to be properly trained of course before one becomes an NAS befriender, even I am not exempt from that for all I might be the most qualified one there.
I am also looking forward to transport being normal (although the fares are going up) and being able to get my landie sorted out with a new clutch.
I also have a number of modifications I want to make to the camping arrangements in my landie that will make it altogether more convenient than it was this Christmas, more storage space, maybe even some space heating.
As for the rest of Autism, well I have no new years resolutions, I will continue to go my own way, and never mind what anyone else says or cares about it.
Actually I am going away as soon as it gets back to normal, on autism business I suppose you might say as I am going to the Uta Frith Festschrift. After that I have some volunteer training to do. One needs to be properly trained of course before one becomes an NAS befriender, even I am not exempt from that for all I might be the most qualified one there.
I am also looking forward to transport being normal (although the fares are going up) and being able to get my landie sorted out with a new clutch.
I also have a number of modifications I want to make to the camping arrangements in my landie that will make it altogether more convenient than it was this Christmas, more storage space, maybe even some space heating.
As for the rest of Autism, well I have no new years resolutions, I will continue to go my own way, and never mind what anyone else says or cares about it.
Tuesday, December 26, 2006
Lau(w)rence of Wales
Perhaps it is significant that I took a DVD of Lawrence of Arabia with me to watch in the back of my landie on Christmas Eve, a luxury El Aurens would never have enjoyed as I sat with a couple of degrees of frost outside outside watching images of the scorching desert.
I always had Lawrence as an image in my childhood, perhaps because my dad had served in Palestine, Egypt and the Sudan, and was a fluent Arabic speaker himself, who had read "the seven pillars of wisdom", and took me to the movies when David Leans epic came out.
Well Lawrence was born in Wales actually in Tremadog, one of the places I visited yesterday. He lived 46 years to my 51 so far and achieved more than I ever will in that time.
I guess I found the romance of the movie more interesting than the reality, and was taken in by it, as I expect my dad having known the realities of the Bedouin and the desert was also. There was something about the strangeness of Peter O Toole's portrayal that I could identify with, his insubordination, his aloofness, his strange manner notwithstanding the trick with the matches (I burnt myself with my lighter yesterday too –accidentally)
As Sherif Ali played by Omar Sharif said, after the fateful incident of the man El Aurens brought out of the desert “Truly for some men nothing is written unless they write it themselves”
Well Lawrence had a journalist who created his image, and a Movie director of the calibre of David Lean who enlarged upon it decades after his death.
The real Lawrence sought obscurity and the routine of service life after his brief sojourn in the floodlights of fame.
So what is the relevance of this. Well my journey into Wales probably seems more romantic from the outside than the actual experience in the miserable weather and the cold, and the cramped conditions spending the night in the back of my landie, like the difference between the cinematic crossing of the desert in less than half an hours screen time, complete with dramatic soundtrack.
There was no soundtrack to my journey into Wales and just like the cinema, what you get is an edited version of 17 pictures out of 102 taken, for you to enjoy and I hope they were worth the effort.
As for Lawrence, if I had been able to stand next to him, I would tower over him physically, he was only five feet five and weighed a lot less than me, who am no heavyweight.
Thursday, December 14, 2006
My Christmas Card
“O Lord, support us all the day long, until the shadows lengthen, and the evening comes, and the busy world is hushed, and the fever of life is over, and our work is done. Then in your mercy, grant us a safe lodging, and a holy rest, and peace at the last. Amen.”
My pictures for this year when they arrive.....
Wednesday, November 29, 2006
Terra Incognita beckons, could this be my last blog?
I was going to entitle this blog “the suicide season” but that is too scary or “suicide postponed” which is more accurate, but I did not want people panicking and overreacting.
Anyway whilst driving into town on a necessary errand, it occurred to me whilst thinking deep suicidal thoughts that it can’t be that bad else I wouldn’t be paying attention to the road and my safety would I I seem to have far too much hold on life to be reckless on the road:)
Well it may be the suicide season, but I think I still have too many immediate things to do so I will postpone the crisis until June, in a Micawberesque hope that something will turn up (it won’t, things never do, interjects the perpetual pessimist)
So what brings all this on then?
Well I note a general tone in my blogs of dissatisfaction with life. Winter is always a miserable time for me, more so now when I am sitting around in my cold flat worrying about the heating bills.
My decision to study at Birmingham is one of the principal causes for my unsettled state beyond the season itself, in that up to now I have had the structure of a conventional course to take me away from my flat and give me some routine. Things are not turning out with distance learning, it is not that I can’t cope or am behind in any way, I just don’t like it.
I am determined to continue though, because the second of my worries would not be a worry if I planned to abandon my studies, and that is my concern over how I will pay for them next year. (Hence the postponement of any suicidal plans until I am certain I will not be able to)
And what else? I am disappointed that no-one is buying my video from the NAS. I am disappointed because it is clear that a coherent and rational lecture is not what the autism market wants, I am badly positioned.
I would be better off as another autism “whore”. Dancing to my masters tune at some curebie conference. Do you think they would take my teeth out too, like a dancing bear so they could be sure I wouldn’t bite?
The upshot of this despair is that you might be seeing more of me on youtube instead showing that I can play the flute and act the fool. A few brief hints of Terra Incognita, that project that is pointless my continuing with as there is no market for it.
So is this my last blog?
Probably not, I know myself better than that, and although I am somewhat sick of the autism hub at the moment, things may change.
I pagliaci.
Anyway whilst driving into town on a necessary errand, it occurred to me whilst thinking deep suicidal thoughts that it can’t be that bad else I wouldn’t be paying attention to the road and my safety would I I seem to have far too much hold on life to be reckless on the road:)
Well it may be the suicide season, but I think I still have too many immediate things to do so I will postpone the crisis until June, in a Micawberesque hope that something will turn up (it won’t, things never do, interjects the perpetual pessimist)
So what brings all this on then?
Well I note a general tone in my blogs of dissatisfaction with life. Winter is always a miserable time for me, more so now when I am sitting around in my cold flat worrying about the heating bills.
My decision to study at Birmingham is one of the principal causes for my unsettled state beyond the season itself, in that up to now I have had the structure of a conventional course to take me away from my flat and give me some routine. Things are not turning out with distance learning, it is not that I can’t cope or am behind in any way, I just don’t like it.
I am determined to continue though, because the second of my worries would not be a worry if I planned to abandon my studies, and that is my concern over how I will pay for them next year. (Hence the postponement of any suicidal plans until I am certain I will not be able to)
And what else? I am disappointed that no-one is buying my video from the NAS. I am disappointed because it is clear that a coherent and rational lecture is not what the autism market wants, I am badly positioned.
I would be better off as another autism “whore”. Dancing to my masters tune at some curebie conference. Do you think they would take my teeth out too, like a dancing bear so they could be sure I wouldn’t bite?
The upshot of this despair is that you might be seeing more of me on youtube instead showing that I can play the flute and act the fool. A few brief hints of Terra Incognita, that project that is pointless my continuing with as there is no market for it.
So is this my last blog?
Probably not, I know myself better than that, and although I am somewhat sick of the autism hub at the moment, things may change.
I pagliaci.
Tuesday, November 21, 2006
The NAS and I
Considering the speculation as to what the role of an NAS councillor is, on posts to fellow councillor Mike Stanton's Blog I have decided to post something I was asked to write following my election to the board and I include the preamble that goes with it, to set it in context.
So there can be no doubts about whether I am writing with NAS approval or not, the article as written was passed by the then Chairman Tony Kay before I submitted it to Autism Europe for publication, which explains why I am fairly tame in some parts of it and don't speak more of the particular struggles I had to gain acceptance and credibility. Please also bear in mind that I wrote this more than three years ago, at the beginning of my role on the board of trustees. I have now served one full term on the board and was recently re-elected for a second term.
So there can be no doubts about whether I am writing with NAS approval or not, the article as written was passed by the then Chairman Tony Kay before I submitted it to Autism Europe for publication, which explains why I am fairly tame in some parts of it and don't speak more of the particular struggles I had to gain acceptance and credibility. Please also bear in mind that I wrote this more than three years ago, at the beginning of my role on the board of trustees. I have now served one full term on the board and was recently re-elected for a second term.
Preamble:
The following article is by Larry Arnold, a person with an Autistic Spectrum Disorder (ASD) , who has recently been elected to the Board of Trustees of the National Autistic Society, (NAS), in the UK. He was asked provide an article for the magazine LINK, the magazine of Autism Europe, to describe why he stood for election and to express his reactions to the NAS.
Readers should be aware that the NAS’ governing body, the NAS Board, is elected by an electoral college of 35 Councillors which in turn, is elected by the whole membership.
A working party was established several months ago to examine whether to change the constitution and governance of the NAS and, if so, what changes should be made.
The NAS: The view of an insider with ASD
My first encounter with the NAS was back in 1999 when I was looking for information to take to my doctor about diagnosis. I was in London for a meeting with RADAR (Royal Association for Disability and Rehabilitation) as I was at that time the member’s representative for the West Midlands Region.
My next encounter was after I had joined the NAS and went to my first AGM. The meeting was not too far away from me I decided to find out more about what went on being as there are no branches where I live. I did not really know what to expect and sat through most of it with a burning question on my mind. Where did I fit in? I had in my past involvements seen the general move away from parent dominated organisations in the disability field toward organisations of disabled people. It was very much in the spirit of “nothing about us, without us”, that I asked a question about involving people like myself in the future of the NAS.
I am not sure I was altogether satisfied with the seeming vagueness of the answer, as I did not see a lot of evidence of participation, I had heard of Richard Exley, another person with an ASD and that was about it. However when the papers came out for nominations to the Council I decided I had nothing to lose by having a go at election myself.
I had the support of a couple of stalwart members who I had met on the internet and penned a little manifesto which included such phrases as "cutting the Gordian knot". However I mitigated that with information about the various other committees I had served on locally and to my surprise I was elected.
I would say that I probably started off on the wrong footing with a minority of the 42 fellow Councillors, as I guess I came over as quite confrontational and I found the style of the Council meetings somewhat difficult to start with.
I was aware of what I regarded as some major failings in the NAS so far as representation by people with AS was concerned. I was angered at the constitution’s favouring of parent membership which I saw as a definite barrier to ever seeing a majority of people with ASD’s on the Council.
I felt it was quite difficult for me to put my view across and at the same time convince the other members of the Council that I was not just a one issue person and could think about needs beyond my own.
I was and still am involved in a world wide internet culture where there is enormous suspicion of organisations like the NAS and its American cousins. I felt caught in the middle of this, trying on the one hand to show that there is a competent body of Autistic people capable of taking on the responsibilities of governance and on the other trying to show people why it was worthwhile getting involved with the organisations in question if you want change them.
I have always felt that if you are not happy with something it is not enough to stand on the sidelines and moan about it, you need to get involved.
As I learnt more about the inner workings of the NAS it became more apparent why the simple approach of demanding a quota of people with ASD’s would not work. There were simply not enough of us in the organisation to begin with in order to fill it. What is more on encountering the entrenched views of the “opposition” I came to the conclusion that I needed patience and diplomacy, skills that don’t come easy to me.
I think my real opportunity came through serving on the governance review working party. There I could see why my initial approach was over simplistic and that there was a need to convince the entire membership before major change became a possibility. Although I had demonstrated the power that is potentially there for 20 members to put an amendment to the constitution, I realised that to have gone ahead with a separate motion to remove that part of the constitution which requires a majority of Councillors to be ‘Parent Members’ before the working party had reached its deliberations, would have been to force the issue prematurely and in any case the majority of the working party seemed to favour change so it made more sense to go with that consensus.
So far as progressing beyond the Council to the board, I was disappointed at not making it onto the board at my first attempt, which led me to fear that there was an inbuilt balance against that as one needed a majority of the Council to be voted on.
However I have modified my view considerably as I have learnt more about the structure and dynamics of the NAS. I still regard it as a dinosaur, but not in the sense that it is obsolescent but from the point of view that it takes a long time for things to travel from the head to outer parts of the organisation. Change cannot be forced any faster than the organisation can take it.
I think I have proven something by coming onto the board, that a person legitimately diagnosed with an ASD can be more than merely a token presence and that I can understand and advise on the totality of the organisations involvement not just my special area.
My goal is to encourage other people like me to get involved, not necessarily at top level, but in branches, to demonstrate our abilities through action and learn the skills necessary for good governance. I was pleased when Clare Sainsbury, another person with an ASD spoke as a guest at the last AGM, since she was saying many of the same things that I was and I am sure people were listening.
That is not to say the NAS does not have to change to be more welcoming toward our involvement. Parent members have to overcome the fear that we have a different agenda to them. I want the same, a fairer society, where diagnosis is not a political issue to be stalled for fear of the claim it puts upon resources. Though not a parent myself I am still desperately worried about education and the rising numbers of exclusions which is mocking the so called drive toward inclusion.
In all of these things I speak from experience. As a person who has been through the education system with an unrecognised ASD. I am as qualified to speak about it as any parent is, so long as I keep up to date and keep listening.
We all have a tremendous contribution to make and I include those who are currently using the NAS services in that as well. It is not only a great challenge to the NAS to more actively involve the client group it represents but for us when we do get there at senior level it is a challenge to understand the dynamics of the organisation and overcome our preconceptions so that we do not lose sight of the breadth of the Autistic spectrum either.
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