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.

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.

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.....

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.

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.

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.

The Scorpion or did I blow it?

Aesop has this fable and never mind what my star sign is, it goes thus:

A scorpion wanted to cross the river so he asked the frog to carry him across on his back.

The scorpion protested “Oh no I cannot do that because you will sting me and I will die”

“You will not die” answered the scorpion because if I sting you and you die then I will drown.

Convinced by the scorpions logic, the frog relented and agreed to carry the scorpion across the river on his back, but as the frog swam to midstream the scorpion stung him.

“Why did you do that?” said the frog “Now we will both die”

“Because I am a scorpion” answered the Larry.

Well perhaps I scored an own goal today at the NAS AGM. Well I wear the smart clothes that betoken me as a respectable bourgeois and I try to keep within the rules putting my hand up to ask questions but come the second half then I am as unable to control my own ineffable Larryness as the scorpion was to avoid his own doom, for one of the speakers was an Aspie no less, who appeared to me, to be singing the gospel of Lianne Holliday Willey, that it was wise to pretend to be normal if you wanted to get on in life. Now forgive me if I am misrepresenting the actual message of the speaker I am merely talking of my reaction which was to ignore all protocol and treat the meeting as if I were a placard waving demonstrator intent upon making a point.

“That is everything I stand against” I loudly protested several times before resorting to a self imposed temporary exile from the meeting.

Now the point is, it was perceivably rude of me to shout down a fellow Aspie when that behaviour of mine is surely normally reserved for curebies like David Amaral. Indeed after the meeting there proceeded a discussion where I was challenged by my erstwhile antagonist as to what I had achieved, and indeed maybe I had misunderstood some possible ironic content and subtlety in all of my “righteous zeal” and "red mist"

However that seems forever what I am fated to do. I don’t know in retrospect whether it was wise for a member of the board never mind a member of the audience to remonstrate with a speaker thus and what message this might have sent to first time attendees at the meeting who have yet to encounter my somewhat “unusual” style.

Old timers familiar with me would not have taken that amiss because in a sense not to have behaved as I did would be to be someone other than I am. However the challenge was whether by appearing to be someone other than I am, I might have been able to make a better impression on those I wish to convince of my point of view and not to turn them off.

It is in a way a subtext of this whole “neurodiversity” vs the curebies argument as to whether both sides are being so “unreasonable” that dialogue is impossible.

Well dialogue was not impossible between me and my antagonist even though he had originally got me well riled and right narked.

Well whether it was wise or not, I did what I did, and I don’t suppose this will be the last occasion no matter how hard I try to dress up the external me. My point really was that although I have some degree of choice how I behave (not going into deep fatalistic philosophy here, lets keep it simple for now) and the guy who annoyed me had even more control, I was trying to hold it together for those who will react in unpleasant ways that do not seem in their best interest in the uncomprehending world of NT’s.

Point is though when I say that I actually realise that although I can see the criticisms, see possibly that I did over react and was over literal and somewhat polarised in my thinking perhaps I really did have no choice but to do as I did and cannot try and explain it away neatly. Whatever? I can at least appreciate the consequences and just as last year, when my overriding of the chief exec when I did not like his answer ended up in the official record, I did what I did and just have to hope that my message was still heard in spite of whatever repulsion some folks might have to the way I put it.

Winter Blues

Maybe it is the season or maybe I am feeling my age. I have not been free of a sore throat or cold of some sort for weeks on end and my back hurts to the extent that walking is difficult.

I fear I don’t have the stamina to get through this coming winter and do anything positive, its an endurance to get up and go out these days.

Apart from that I am in relative despair at the way autistic culture seems to be going, I don’t feel much in common with the ever growing number of freshly diagnosed aspies out there, or even some who have been around a while for that matter, whose form of self identity seems to encapsulate just about every false idea on autism going around. And if it is not the received culture of deficiency it is the notion of hyperperfection with the usual litany of retro diagnosed genius heroes to beef up ones ego.

I can see why the autistic world seems to be polarising and whichever way you lean we are actually the worse for it in my opinion (not that my opinion counts for much nowadays)

Quite honestly there is some writing from the spectrum I just would not wish to associate with and sorry to say some of it on the autism hub too.

I suppose when summer comes (If I have not died from pneumonia in the meantime) I shall get a new hard drive and get back to my film making, though what is the point of that as it’ll only end up on you tube I guess since my late attempt at a more commercial venture seems not to be of interest to anyone out there. People want something for nothing, and they certainly don’t want to pay to be told they have the wrong idea about autism. Oh well perhaps the cages of the self narrating zoo exhibits are warmer than my idiocentric flat.

Whats the point

I have been absent from Blog Land a while, I have not even been bothering to comment on other peoples blogs.

Well partly it is because I have been wasting my efforts on the awares site until recently and partly because my studies are taking up more of my time.

I think it gets a bit pointless after a while, all the email and blog exchanges, in that when all is said and done, we on the spectrum can be as devoted to our own pet ideas about what autism is, how it came to be, who called it what and who deserves to be in and who outside the spectrum as any of the Mercurians and curebies out there, and I am fed up with it.

It is bad enough having to defend a position when I read the rot that passes for research and scholarship in the professional literature. Academically speaking I am not altogether convinced that any of the “names” are as "high functioning" as their credentials and position make them out to be in the social ladder of research fellow, PHD or what have you. The memes just pass from one paper to another like Chinese whispers and never a thought as to where they come from and what validity they did not have to begin with. There is just so much sloppy thinking. Take a paper on prosody for instance, written by American’s studying Americans, well American English prosody is different from UK English prosody, Caribbean English prosody and never mind all the non English languages out there, yet the authors universalise from what they know over to what they don’t even know they don’t know. That’s Volkmar and his pals for you.

Why do I feel so angry right now. I don’t know, you would think I would be rather pleased with myself, I have got I wanted and been transferred from undergrad to masters level on my University course, that’s got to be some acknowledgement at least.

However I just think the way the course is structured is not ideal for me at all, but I have to make the best of what is available if I want that “glittering prize” at the end. No I don’t think I will ever be happy till I am writing a course myself and teaching it. And then I shall just have to put up with people criticising me, well nothing new there at least.

Survived Lancaster

Well I am over the Lancaster Conference and just as I thought it was tough on me.

I could have made improvements to the way it was organised which would have improved it for others not just me, with a bit of advance planning.

My advance planning failed mind you, because of the unpredictability of Virgin trains, which despite having assured me on two consecutive days that the trains were running from Coventry on a Sunday, when I arrived at the station they were not.

By now however I am used to anything with the trains :(

My presentation went down Ok I wasn’t lynched for heretical thinking, but I wonder how much notice was taken and if I will have any influence on shifting the paradigms of Social Model thinking. In comparison to Tom Shakespeare I am attacking it from a different model, he is a revisionist for sure, whereas I am actually more radical than the original model.

Well there was lots of fluent bollox spoken and I have to confess I couldn’t follow all this post modern discourse when it is spoken in a lecture theatre. Mind you my language reduced in the opposite direction as I struggled with it all.

I am glad I booked the extra night, because after the conference I just lay on my bed and did not get up till the morning, my limbs aching and feeling total exhaustion.

Maybe I should not have drunk so much after my presentation though, but the relief afterwards led me to such excesses, that and the free wine provided by Tom Shakespeare’s publisher.

Figured out one thing mind, it ain’t us as have necessarily got flat voices we just sing in different harmonies as it were :(

The Groves of Academe

Well I was mega stressed by the whole thing, and although I had my laptop and recording device, I still could not stand to hear falsehoods and inaccuracies perpetrated during the lectures, and I guess at some point I could almost have taken over.

I was full of righteous anger every time the infernal triad was rolled out, if they could but see themselves and realise their own inconsistencies because if you were to add up everyone’s variant version of the memetic triad it would add up to something considerably more than three.

However that apart the thinking at Birmingham is considerably more liberal than elsewhere and we are given more credit than the likes of Amaral and Volkmar would give us.

It was a bad sensory environment and one where I did not know where I was supposed to be most of the time, when my laptop crashed, so did I.

The problem in the evenings was that I tried to be social, but I could have stripped naked and danced on the table and still would have been invisible, because there is something about the intensity of NT's social focus that excludes everything else, I was a tree falling silently even when I lost my temper.

There is a lot I am not happy about today, a lot I did not take in, a lot of consideration that was not given to my own autism despite being in the company of autism "experts" and workers.

I really only felt comfortable with Dinah Murray and Wendy Lawson. Dinah gave me a lift home, with Wendy in the back, I hope they now remember where the best Pylons on the route are, round by the NEC.

Did I forget to introduce Electricity Pylons into my interjections during any of the lectures, no I did not, (tastefully of course)

Other than that I am not very happy at the moment, the first part of the course will not be that difficult for me, but the problem is not what I know, nor what I can learn, but how I present it.

Maybe that is why the likes of Wendy Lawson and Ros Blackburn always get to do the presentations, they are smoother at it.

However in a weeks time, I am really in the Lions den as if Birmingham was not bad enough. I am going to be speaking fluent Larryese to some of the academics who invented the social model of disability and they will no doubt be speaking fluent bollox back.

I have four thousand words to deliver, that would if it were an assignment for my Birmingham course be at Masters level, yet Birmingham expects far less of me. Do you think I feel unappreciated, you can sure I do.

The Infernal Book Meme

Whilst I am awaiting the inspiration to write something more sensible I shall try and come up with suitably Laurentian answers to this parlour game to perplex and annoy.

So leaving out the Bible, and the Encyclopaedia Britannica as one is supposed to do when one lands on the desert Isle, in Roy Plomley's classic Desert Island Discs, here goes. Be prepared for books you have never heard of.

One book that changed my life

Well it is not books that change lives but what one does after one has read them, maybe the first book I ever read, was the one that changed my life most, changing me from an illiterate dyslexic to a child on the path to discovery

One book that you've read more than once

How about two books I've read more than twice, that would have to be something like Le Corbusier's la Ville Radieuse, and Ivor de Wofles (sic) Civilia I guess :)

One book you'd want on a desert island

A survival manual what else? With lots of spare pages you can use as tinder.

One book that made you laugh

DSM IV what else?

One book that made you cry

Books don't make me cry, onions do, maybe a textbook on onions if there is such a thing might make that cognitive leap.

One book you wish you had written

Well how do you know I haven't? I do not wish I had written other peoples books, I wish I had written my own.

One book you wish had never been written

I suppose the Empty Fortress by you know who:(

Other than that…

Anything by Fred Volkmar

One book you're currently reading

Er, I am reading the screen at the moment, anyway a recent blog will tell you one book I have recently read, currently I am attempting to wade through a swathe of books, including Hello Americans, which is a biography of Orson Welles by actor Simon Callow. I ordered the book after seeing him promote it at a literary event in Brum. Like as not it is so thick it will end up like the Decline and Fall of the Roman Empire, by Edward Gibbons, a book I shall never finish.

One book you've been meaning to read

Majia Holmer Nadesan (2005) Constructing Autism: Unravelling the 'truth'

Apparently it is a Larry sort of book, not a Kirby or a Lathe take on autism but a book about how the whole notion is socially constructed. I have managed to get the School of Education at Brum Uni to order it for the library, you see I have started being subversive at Birmingham already and I am not even onto the course yet :)

Oh yes and before I end let me add one of my own

One book you found particularly challenging

William Dugdale's Monasticon Anglicanum, being as I was only seventeen when I read it in its original first edition dated 1655 in Latin, not having had the benefit of a public school education where one learns Latin at the end of a stick. Lots of fine pictures in it though and I do own a book of these being prints by Wenceslaus Hollar.

Now who shall I tag next?

Nobody that is far too social an activity for me to get my mind round:)

Robots and Chimpanzees (that's us folks)

You would think that in the intellectually respectable world of the chattering classes, someone like Stephen Pinker a Harvard Proffessor of Pyschology no less, would in his writing on culture, and the mind, know a false meme when he saw it.

Yet he perpetuates the mythology of autism we have inherited down through the changeling of mediaeval legend through Bettelheims exported Freudian metaphor to Simon Baron Cohen’s Theory of mind hypothesis (by way of Philip K Dicks Androids, and the Voight Kampf test)

Fact and fiction seamlessly integrated, for on page 62 of Stephen Pinker’s “The Blank Slate” (Penguin London 2002) He states “Autism is an innate neurological condition with strong genetic roots. Together with robots and chimpanzees. people with autism remind us that cultural learning is possible only because neurologically normal people have innate equipment to accomplish it.”

The notions seem to be lifted straight out of Simon Baron Cohen’s 1995 (and well out of date) tome, Mindblindness, an Essay on Autism and Theory of Mind. for he also states :

“A mind unequipped to discern other peoples beliefs and intentions, even if it can learn in other ways, is incapable of the kind of learning that perpetuates culture. People with Autism suffer from an impairment of that kind. They can grasp physical representations like maps and diagrams, but cannot grasp mental representations …”

For a professor of psychology Pinker seems extraordinarily ignorant about what language, culture and representation actually are as concepts and how they relate in terms of cognition. In other words he has no idea of my world, it’s levels of complexity and richness.

This whole network of blogs we belong to on the Autism Hub, if it proves nothing else proves that we have representation (in more one sense of the word) and the means of transmitting culture for if this is not it, what is?

So what is it then the robot as exemplified by culturally complex character Roy Batty of Blade Runner, or the sophisticated Chimpanzees of the Planet of the Apes.?

Beware Professor Pinker, the Autists might take over the planet one day and strip you of your academic credentials.

Study: Autism Affects Entire Brain

"New research is challenging the long-held belief that autism affects only those regions of the brain that control social interaction, communication, and reasoning — suggesting, instead, that the disorder affects the entire brain. "

From CBS News.


This is what many of us with the condition would tell you. It goes much further than the diagnostic manuals say, indeed sensory perception has been much ignored until recently.

It also shows that Autism has to be a part of the natural human condition, you cannot cure it without destroying the person.

I and my autism are indissolubly linked, it has advantages and disadvantes but it is all relative. Society is going to have to live with autism just as we have to live with society.

Attack of the non verbals.

I have just had an unpleasant experience this morning whereby my speech would not carry me through a series of phone calls.

I am not even sure that it is autism, rather than a dyspraxic, dyslexic thing being unable to articulate.

It doesn't cut out altogether, but what happens is it slows down, the words don't come, and I cannot proceed because I can neither compose the sentence in my head that I want to say (Chomsky note, my innate grammar goes) nor actually get the verbal muscular apparatus to utter the next word.

It is like playing a record that gets stuck in a groove over a radio where the transmission is intermittent and ends in a long period of silence, perhaps a lot of stammering over a word which is holding place while the rest of my brain tries to figure out how to use words, punctuated by islands of fluency when whole phrases come out as if there were not problem.

It’s a right bugger when that happens, as it always does when you have something complex and important to communicate.

I guess it must puzzle people when it breaks up like that, because they are used to me being hyperverbal even if the dialect I am speaking is unintelligible Larryese anyway.

So what is the problem I was trying to communicate?

Well it is my Disabled Students Allowance assessment report, it is recommending unsuitable equipment, the cheap and nasty option of an all in scanner/printer. When what I need is a decent printer and a decent OCR document management package not some generic schlock that comes bundled with the cheapo option.

What is annoying is I have a scanner which is OK, and a printer that will do, but because both are well over five years old neither is likely to work with a current model laptop which they are providing, for a combination of hardware/software and obsolescence problems.

My desktop is slowly dying, I can't defrag my discs because of the bios on the motherboard won't support any of the hard drives currently available, my graphics card is failing, and again my processor won't support any replacement card currently on the market.

Makes you sick, that you can't simply replace the hardware with the equivalent old technology to get it back up to speed, you have to go for a new computer entirely, and then upgrade your peripherals too.

The costs of becoming a student mean I can't afford any of that, but the grants and allowances to help you are quite inadequate, and deal with budget options not individualised person centred solutions.

That coupled with the fact the first part of the course is in about three weeks time, and all the staff who can help sort out this problem won't be back till then by which time it is too late.

So when I try and phone anyone, my own speech is as halting as the computer I am stuck with for now.

Philadelphia.

Philadelphia.

Named by Quaker William Penn as the "City of Brotherly Love" from the Greek. That was the cryptic reference in my last post :)

Well Autscape is over and I am settling into the next phase of my life.

Autscape was fine, my Landie did not let me down, and I was comfortable being able to sleep in the back.

The presentations were mixed, I liked some, not so sure about others. Wendy Lawson got of lightly this time, (apart from suffering me over dinner) so did Jim Sinclair.

This one was interesting, and the guy deserves more publicity even if it is hosted on “Autism Never There’s” website.

On arriving home I have to deal with the operation coming up very shortly now, and worse than that even, the first study weekend at Birmingham Uni.

Why oh why do they have to have Ros Blackburn to do the self narrating zoo turn?

I would rather someone who is politically aware and linked with the wider online autistic community, not someone who annoys me with unsustainable bias.

I would rather see Kieth McKenzie do his autscape presentation although he has more to learn about our wider community yet, which things I am sure he took note of after Autscape.

I shall have to make sure that the other students are aware that there are many shades of autistic opinion and make sure they know about the autism hub even if I get chucked out doing so.

That course has a lot to learn and I shall make sure that my metaphorical sword never sleeps in my hand till they look at what they don’t want to look at rather than stay with what is safe.

Is it any wonder I am very tense about the whole thing?

Off to Autscape in the morning

Well tomorrow actually, but why should I let that get in the way of a catchy title and a literary reference that is probably far too obscure for most of my readers. (If you know the title prove me wrong)

I don’t doubt as I shall disagree with practically all of the presenters, not to mention the organisers, not to mention the very fundamental principle that Autscape ought to be serving but I believe it is not.

So why bother? I guess I want to meet people again (how shockingly NT of me)

Well I might let Wendy Lawson have an easier time than I have given her on my past two encounters. Whatever I guess Autscape does not suck as much as I suppose Autreat would for me, I am not one of natures convergers.

What really pisses me off though is the whole internal “navel gazing” of it all. I prefer myself to present at more hostile conferences because there are more people there who need to hear about how autism positions within a wider disability movement.

This seems to be my latest perseveration, that we are not going to make any progress or inroads against discrimination and the crap we are dealt unless we make alliances beyond what appears to be our rather insignificant movement when you stand back and look at it globally.

Are we saying anything new?

No we are not even if we delude ourselves into thinking that we do.

Autism is no more unique than any other kind of human diversity. Now whatever the Russian scholars might say, you can’t make an omelette without breaking eggs and I am going to have to continue upsetting people on my right and on my left, before me and behind me, above me and below me. Hedged about with ideologues of all persuasions, you can’t be heard unless you make a noise.


My visions mine, though some I share
I bend not break, for such a load I bear
And what I dream no other mind could see
The pattern of my own eternity
My destination not one I would chose
My life's my own and there's no time to lose

So beat the drum if that is what you will
I need no drum my vision to fulfil
I hear no sound, for sound can come no more
Existence’s edge the place where I explore

Peccavimus (we have sinned)

We are incestuous and cannibalistic

We feed off each others posts in a parody of the construction of co-dependency. We feast upon each other in a parody of the Eucharist, and beyond that we indulge in practices which are tantamount to inbreeding.

We don't see ourselves in this tiny fragment of the blogosphere as part of anything much larger than the world as we see. We have not reached Piaget's stage of recognising the permanency of objects metaphorically speaking, and certainly those distant trees are falling and we don't believe they are making any noise.

I have seen far too much amongst our neat little culture here, that assumes that there is no way of believing but ours, we are the Autistic Amish as it were, or worse the Autistic Exclusive Brethren.

Neurodiversity came to us as a concept via someone whom we now regard as apostate, but the idea came not out of autism at all but out of mainstream disability politics (not that it is that mainstream in terms of wider issues either, but we are an enclave in an enclave)

I feel I need to make these criticisms, to force on us the realisation that we are all talking to the wrong people when we talk amongst ourselves (talk as a metaphor for blog/list/NG discourse)

Reading the criticisms of Kam Nazeer today I was struck by the pomposity of our own positioning, in that we are almost issuing Fatwas against our own kind simply because they are like the Hellenistic Jews of the first century (now there's a mixture of religious metaphor for you) absorbed by a culture which would seem to alienate and distract them from what we believe is the proper way to keep a covenant with our autism.

I spent most of my adult years as an Autist in a different culture, not a mainstream one but a generalist disability one and that is where I learnt the most pressingly important things about autism before I even knew about my own autism or anyone else’s to the degree I do now.

There are many autistics out there who are neither pretending to be normal or aware of being part of our Cosa Nostra. I am bloody sure I spotted one today. Some of them are going to be like Kam Nazeer, well placed and successful in the political economy.

We have to realise we are not the only game in town, and to act on that in a sensible way.

It's like David Blunkett, for whatever you think of him as a politician, he has been in the cabinet as a politician not as a blind man and if he were only a blind man with blind mans interests he would never have advanced that far.

Larry Arnold Myth and Reality

Right now I am feeling somewhat beleaguered having to defend myself against those who sometimes seem to wilfully misunderstand what I am about for purposes that to me are equally mysterious so I propose a little myth breaking as I say goodbye to the world of Usenet where there seems not point in repeating myself ad infinitum in defence against the slander mongers.

Myth - I have been accused of being a super aspie, only interested in advancing the cause of people like myself.

Reply - Anyone who knows me well enough should be able to see that I constantly speak out against Aspie supremacists and others who want to divide the spectrum into an us and them. Those who have seen me in meetings will know I am as vehement for the rights of the unheard autistics who are the cannon fodder of Autism Speaks videos and Press manipulation. If I were to deny my abilities as a polymath in order to become more "acceptable" I would not be true to myself and truth to self is a right I fight for, for all.

Myth - The second that arises from the first is from the parents who accuse me of wanting there children to left in some sort of state of nature and noble savagery.

Reply - This again is not the case, opposing a cure, does not mean I see autism as static or oppose education and intervention aimed at making it easier for children to survive in this corrupt society. I see the goal of “indistinguishable from his peers” as not only unattainable but undesirable and productive of a great deal of psychological harm.

Myth - I am anti science.

Reply - That is based on a misunderstanding of my position that science is not the only game in town, and that even it's paradigms are governed by social, individual, psychological, commercial, economic and academic factors that need to be taken into account in any reading of what is supposedly objective evidence obtained by the scientific method. Indeed the scientific method can be employed in showing the bias in science. There is no unitary thing that can be called science, economics can sometimes teach as much about the behaviour of individuals as cognitive psychology and what interests me are the synergies between different systems. I am a natural philosopher and without philosophy without answering questions such as where does mathematics derive from, what is language, what is logic, what is the relationship between the perceived and the “physical” experimental science cannot even begin to take hold.

Myth - I do not believe in the physical reality of disability.

Reply - Again that is a simple misunderstanding of my understanding of the way language and society works to create different meanings from the same phonemes and syntax. I believe that it is important not to locate disability in the individual as this has led to a culture that does not adapt for difference and sees the solution as fixing the individual, and if that fails eliminating them altogether.

If my car breaks down and runs into a ditch, even after I sort the engine out, it will still be in the ditch, it is better to get it out of the ditch first.

Of course I go to a doctor for mechanical ailments, but I do not need a doctor to improve the social and the physical environment for those whom society casts in the role of disabled. I do not see why I should adopt the stereotypical disabled role, when it is my right to chose who I want to be.

Myth - and lastly that I live in an unreal world of intellectual speculation.

Reply - I live in the real world, outside of my use of philosophical tools I use the conventional practices of politics to get my ideas of liberation across. I pay my bus fare to travel into town I don’t speculate with the driver on the nature of the coins I use or the causal relationships between there symbolism and the town moving toward me as the universe shifts in a relativistic movement around the actors in this drama of exchange calling every new location into being and extinguishing it again as it passes out of perception, fun though that might be if I did not have a bus to catch and the driver and passengers had all day to discuss this in some Socratic agora.

And notwithstanding whatever I was going to write

And notwithstanding whatever I was going to write, this blog is somewhat delayed in appearance as I have only just got back on Broadband after a thunderstorm fried my modem and ADSL connection.

So what was I going to post. that is already old news?

I have been re-elected onto the board of the NAS. I was seriously wondering whether my time was up for that, but I suppose I have the satisfaction of that to moderate this post modern anxiety I feel over having my internet connection cut off.

What does it mean? To me and to others?

Being careful about what I say, to be fair to others, I did not get elected on the board in the first place, the first time I stood. Then I suppose that is natural enough. To be elected in the first place to the board was a relatively minor victory I think, compared to being re-elected. The first time round it established something new, it broke a “glass ceiling” showing that an autistic person could be elected to the board, but I think this second time round, it maybe shows more than that, that an autistic person can be trusted on past performance to carry out the duties and responsibilities that being elected involves. It was not so easy this time, there was more competition. Sadly not from people on the spectrum but there you go, it just shows how much work still lies ahead of me.

I have to admit to attempts at tact and respectability. I might have gone down to my last board meeting in an open necked shirt and shorts, but by the time of the Council meeting I was wearing a suit and tie. Nonetheless any attempt to self muzzle and not have a go at the old enemies, the curebies and the scientists for fear it might jeopardize my chances was doomed to failure,

Well I am pleased with the result, I congratulate the other trustees who either got re-elected or will be joining the board for the first time, I will not have any difficulties working with them or the other way round.

When I first set out to be elected as a trustee I have to admit I did not know what I was letting myself in for and I did not (anymore than I think several other of the new candidates today) knew what we would be letting ourselves in for. You can’t change the world as easily as that because you have to understand the economics and dynamics of an organisation, in the same way that you have to know the MPG of your car when you set out on a journey. You might get in your car at London and want to drive to Scotland, believe that you can, but without realising that petrol has to be paid for and that your tank only holds so much between fill ups, and if you don’t you certainly will not get there.

Being in Control

On reflection I think I can handle a lot of things going on in my life at once so long as I have some idea that I am in control.

Towards the beginning of the year I was very stressed out awaiting the results of my applications to Uni, and more recently with exams coming up, and fitting everything around NAS meetings, getting my DVD completed, presenting a paper in Liverpool and the perennial problems with the Landie.

Well the exams are done with, and Uni is settled and I have been quite able to rush around getting forms filled in, assessments done for Disabled Students Allowance and that sort of thing. I am also resigned to the change in my life that is coming about with leaving the college that has pretty much been the centre of life for so many years.

Even the Landie I am content with at the moment because the work that needs doing has been arranged and some of it is covered by warranty.

No what has put me out now has been a letter I received this morning tell me that on a particular date I am to present at an out of town hospital for day surgery at 7.30 in the morning, with the proviso that if I don’t turn up or let them know if I can’t make it in one day I will lose my place on the waiting list.

Now I have known about the operation coming up for some time, but had no idea that it might not be done in Coventry, and what is more I had been told that the first I would hear would be a call for pre op tests to be done, and this has not happened.

Furthermore the operation was scheduled without regard as to how I could travel to another town for that time in the morning when there are no trains or buses that can get me there that early.

I had a lot of phoning to do this morning to sort that out, not helped by the fact that the wrong number to call had been given on the letter, and that another number I was given put me on call waiting and then told me they were so busy they could not take my call today. Eventually I got through to someone and cancelled.

Now I was not expecting this at this time at all because I have a Cardiologists appointment scheduled for this month and I assumed they would wait until I got the results of that consultation before operating, it makes sense to do that doesn’t it.

I have put in a complaint to the Hospital Trust, about the poor communication that has resulted in this out of the blue, and also about the fact that they are paying no regard to either my AS or my Social situation in any of this. My Social Worker, for once was in today, and he will be writing a letter too.

I need these ops, but I need more certainty to plan around them, this month would not have been a good time, as I want to be able to drive to Autscape and look after myself there and as my Landie is in going in for possibly extensive repairs, being unable to drive would mean I would be unable to get it back from the garage if the repairs were not done in time for the operation.

Hopefully now they will reschedule the op, at a hospital I can get to, and at a time which does not impinge too hard on my new Uni course starting in September, when I also have another conference booked where I am presenting another paper.

Exams again.

I have just completed my last A level exam, and coming so close on the assessment for disabled students allowance I had yesterday it has set me to the customary musing on exams, concessions and alternatives.

Now to begin with my concession for exam is being allowed to complete them on a computer in a separate room, with 25% extra time but spell checking disabled.

It also occurred during my assessment yesterday that to be granted money to by a laptop may not be an option in the future as lap tops become more an more a mainstream necessity for today’s students, it will become something one is expected to provide oneself with anyway and only exceptional software may come as a concession. That would put one at an economic disadvantage rather than a disabled one, as one would be in the same position as any student from a less affluent background.

However I thought too of what the exam was trying to prove. In essence the 25% extra is partly to compensate for not having a spell checker allowed, they give with one hand and take away with the other.

The emphasis on spelling and grammar is there in exams as much as in papers and dissertations, essentially what one is having to prove in an exam is ones ability to recall enough of what one has learnt and to communicate that to a third party under pressure in answer to a specific enquiry. A very narrow scope of knowledge.

For sure the ability to communicate what one has learnt is as important as merely knowing it if one is to go on to any kind of higher education of employment which actually requires one to share knowledge so that I will accept.

What I don't accept is the need to know everything without reference to dictionaries or standard reference materials or notes. Many public speakers will use notes to prompt them, and of course anyone publishing will make use of proof readers if there grammar, phraseology and spelling is in anyway in doubt. Indeed one of the things that the DSA will be to pay for is for me to access that kind of support for my written work.

So a real world test of knowledge would be somewhat more general than a few selected and often badly phrased random exam questions.

I see no reason why someone completely untutored writing an academic paper, using references and a secretary should not gain an equivalent to an exam grade for the final product if that final product better communicates the knowledge one has acquired in the process.

The arguments then come about pressure, it being realistic in a work situation to assume one has to work under pressure and exams are a preparation for that. Not so I say, there are pressures enough having to produce a paper for a deadline, particularly if one is doing ones own research rather than learning in a classroom environment.

Then the pro examination brigade cite the growing amount of plagiarism in favour of exams against course work. To that I say that plagiarism is a problem which needs to be tackled, however, parroting what one has rote learnt cramming for an exam is not exactly being original either.

Well whatever I hope to do well overall in my exams, even though my showing last year was not too good. It is irrelevant to some extent how I do, except to me, because I already have my University place for this Autumn.

That far country (from whose bourne no traveller returns)

I guess this is another gloomy post, another gloomy post on such a sunny day, but the longest day has past already and the days will shorten towards winter.

I guess I have been getting obsessed with my great unfinished video project again, which I started back in 2002 on the second year of my media studies course.

Just under a year ago, I started a rather different project "Whichever way you look at it, it's still autism" Which after some problems along the way, finally saw production as a DVD.

Mind you I have no evidence of any significant sales yet. I guess it may be too radical for the autism market, stuck as it is with medical models. Certainly the major autism publishing houses turned it down because autism or not it was not in the conventional genre.

"Oustside In" of which only some of the credit is due me, continues to shift though, but I have moved on a long way since then, it was made way back in 2002 as well in the days before I got my current favourite hat.

I don't suppose I will ever get any credit for "Terra Incognita" it is going to be a difficult one to get any interest in, being as it is so eclectic and introspective. Now if I were a ruthless publicist like Andy Warhol, who made rather bad movies on his reputation alone, it might be a different matter.

You see in this world it is not what you are, or what you can do, but who you are and how you are placed.

The world laps up videos by Tony Atwood, and all manner of rubbish turned out by curebies and medical model fetishists, who employ professionals to make second rate videos because the professionals know how to reach the market.

I doubt if I will even get any showings on the independent film making circuit. Again that requires positioning, reputation but above all social nous, to "brown nose" ones way in.

And so I am doomed, to my introspection, to doing things the way I want to, but never earning anything from it, until finally I cross the borders into Terra Incognita, that far country from whose bourne no traveller returns.

Heck everybody and his dog will be making home movies in HDTV before I ever complete this in plain old PAL.

The sociology of Autism

Today's blog is inspired by the fact that I am facing two Sociology exams on Friday Afternoon.

Now I took up Sociology because I wanted to widen my perspective on this phenomenon called Autism, as much as for any other reason to add another "ology" to my qualifications.

I think most of those blogging on the Autism Hub are sociologists of one kind or another whether they acknowledge it or not, for what I see is an acceptance of autism that goes beyond medical labels and descriptions of traits, to an understanding of how we deal with autism either as individuals or as parents, is sociological. How autists are educated, diagnosed, discriminated against, stereotyped; that is all sociological, and those who look merely on the "disaster" of autism, and accept every fly by night explanation or offer of a cure are missing the context of their own being as a participant in a wider society that has structured their beliefs, their faith (or not) in medicine and science and their belief that something must be done to relieve them of the guilty burden they feel (whoops straying into another "ology" here)

As a youth, I looked down on Sociology as a "wooly" discipline, studied by those who couldn't think of anything better to do, but "wooly" though it is, it certainly has helped me to realise that Autism is whatever people think it is. The very traits of Autism and its diagnosis by behavioural observation with its corrollory, the frantic search for biological and neurological indicators, shows that we do not have any definitive answer to the question.

How autism is diagnosed, how it is treated(clinically and educationally) and how we are treated (by our peers and administrators) is governed not so much by the autism, its severity or its cryptic qualities, but who we are in society, and what society we are in.

Both socialised medicine and insurance based medicine favour those who have the education and the social status to challenge peremptory decisions. That goes not just for Autism but for any medically diagnosable condition.

Those who don't have the status or the income find themselves accepting whatever is available, and often there is very little growing lesser the further into the third world you go (which is as much present in North American and European cities amongst the disenfranchised poor as it is in Calcutta or Rio.)

I am writing to you, because I am educated, I have welfare, and I have an attitude too. Otherwise I would just be another lost soul on this sink of an ex Council Estate, living in a condemned flat.

Who is the voice for all those disenfranchised autistic people I wonder? Certainly not the curebies with their "me me me" culture.

If you are a parent on such a nightmare estate, or maybe even a lately diagnosed "aspie" or whatever, you are the victim of just about every piece of misinformation out there, particularly on the web (assuming you have any access to it at all)

Too many spokespeople on both sides of the Autism divide come from comfortable middle class backgrounds, the well heeled and the well educated, whilst the basic struggle for survival leaves you with little surplus energy or cash for such things.

I spend an inordinate amount of my money on my internet access because it allows me to escape the confines of this existence and to "punch beyond my weight"

You don't expect many fellows of the Royal Society of Arts to be living in my circumstances, it is not the kind of organisation that most working class people join.

Well there is a sociological thesis about participation in such organisations waiting to be written, if it has not been already, for the critics of pluralism, would allege that even the interest groups are run by self selecting elites.

Sadly in my adventures into such territory I often find that to be the case.

Makes me wonder how we can ever set up an authentic and credible grass roots group for autistic advocacy that does not rely on the relatively advantaged to give it credibility and therein instant lie the dilemma, which is the curse of being able to remedy it. You need leisure and income to devote to such causes, and the leisured and wealthy often do not understand what it is not be of their company.

Interpersonal Skills, job finding, and volunteering

Old lags here might know I am a photographer and currently out of work.

With advertisments like this one "JUNIOR STUDIO PHOTOGRAPHER required for a contempory modern Hertfordshire based studio. Must have excellent interpersonal skills" Is it any wonder, that my business failed.

Self promotion is the worst nightmare for any budding aspie businessman (or woman)

Talent is never enough it seems whilst the majority of advertisments call for "team players" and "excellent communication skills"

Yes I can be a team member, if my role is well defined and the other team players, play their proper parts in support, but usually that is not what the phrase means, it means that one needs to be a joiner, a voluable personable socialite.

Communication skills I must have, to have survived on the board of the NAS, to have built a web domain as large as mine, but again what counts is first impressions at an interview, or on the phone.

I have offered my services as a volunteer to a local organisation (not the NAS) as I think the work experience might be useful to me with regard to my studies next year, but the organisation turned round and said that they do not take volunteers, I believe that to be an outright lie, they meant that they did not take awkward autistic volunteers (and they an autism charity too)

I have been let down and lied to so many times by those who are supposed to be looking after or promoting my interests. My art is not promoted, my DVD's are not promoted, I am a side line.

Well I will promote myself here, you can buy my DVD direct from me and I will be the one who benefits for once http://www.shiningcityvisions.com/

If you buy from the NAS I am not allowed to profit from any of the sales via that route, though the NAS profits enough by my being on their board I might add, but Charity rules are one way and out of date, made for the leisured middle classed who can afford to give their time for nothing, not the forcably leisured hoi polloi who can't.

Whatever Happened to Real Ale?

Back in the seventies I remember when the Campaign for real Ale started. Nowadays it seems in fashion again, but how real is it? We need real pubs to go with it and however many pubs sell "old todger's" or whatever retro confection the advertisers have come up with served from olde worlde beer pumps the real industry has been decimated.

I was travelling back on the train from that disaster of a supposed aspies consultation Aspect (which I do not even deign to link to), which I considered to be thoroughly stage managed, and I saw the old Springfield Brewery in Wolverhampton devastated by a recent fire.

I resolved to go and photograph what remained before it was lost, in the company of a couple of neurodiverse friends who were with me on my media course

Here is the result

http://www.larry-arnold.info/photography/Wolverhampton/index.htm

One of those friends if you want to look him up, maintains the wikipedia pages for Rugby and Coventry

Not so much a Blog, more a message of doom.

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 :(

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.

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.

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.

La Malade Imaginaire

I sometimes suppose I ought to have a capital H on my forehead for Hypochondriac (not hologram) as I have found myself in the emergency room twice this week, the first when I looked in the mirror and saw an eye full of blood, the second when I had a re-occurrence of irregular heart beats.

That turned out to be ectopic beats and not life threatening

http://www.yourheart.org.uk/arrhythmias04.php

This has happened to me before but the last time I went to emergency with it, it had calmed down by the time I got to see the Doctor, and by the time I had been sent by my GP for an ECG it did not show up either (I tried to convince him I should be put on 24hr monitoring as it was not there all the time) Well it did show up on the ECG this time and was apparent on taking my pulse too, so at least I have the proof this time.

Whether the other thing was related I don't know, that turned out to be a subconjunctival hemorrhage which is not uncommon (just has never happened to me before). My blood pressure was not raised on either occasion so there is no surface reason for supposing a connection, however with me it tends to take years for anyone to recongnise a medical problem that is there because they are always reluctant to send me for tests.

Right now I am awaiting a series of operations for carpal tunnel syndrome in both wrists and the equivalent in my elbows. It showed up on the tests, but why am I always dismissed when I describe symptoms I know I have when the tests will either prove or disprove it. Economics I suppose.

Anyway I don't want to end up like this Woman:

http://news.bbc.co.uk/1/hi/england/london/4906992.stm

Cos I am too scared to summon an ambulance when I really need one.

What was it Spike Milligan had on his tombstone? "Told you I was ill"

Who am I ?

Or for that matter What am I? These two questions seem indissolubly linked and it is only semantics that separate them. Is there a difference or am I ultimately bound up in my bodily functions and neurological algorithms?

Well leaving Descartes out of the question for now, as thinking about something is not enough to reveal its true extent, I guess I first started musing the question when my mother died. When it was already too late to ask her the questions that I was pondering. I realised then that the door had closed on things I would now never find out.

I was up till then merely Mary ’s eldest son, Marcus’ brother, bearer of a family name that was dying out, leaving myself and my brother as sole representatives of that line.
It was a quest that led to my diagnosis of Asperger's syndrome because the what had practical implications even if the who did not.

What were the limits on what I could do? What was I coming up against in the world on my own? It seemed back then I needed the label to tell me as much as anyone else what I was.
And what was AS anyway? I had some ideas, that led me after a number of false starts to a shaky conclusion that it might be the most accurate label so far, but to be honest I was never that sure, never had the unshakeable conclusion for that is something that comes not from outside but from my inside observation of the feeling that I am not like the rest of humankind.
And so I embarked on a secondary quest to find out all I could on the “meta-label” autism, and to see that this was a fractured and uncertain science, with polarities not so much in the fatal analogy of the spectrum but in the opinions that divide this field of human understanding and representation.

Does any of it answer who I am? Or am I still questing after that? For even if autism is intimately bound up in my being, then so much more is also bound up. Leaving aside the why’s which no-one can answer, there are the where’s and when’s, that is to say the individual circumstances of being brought up in my time, in a specific place that inevitably colours my own historiography.

If I were to stand naked, throwing aside even my spectacles, my jewellery, my cane, those physical and psychological props that help me to interface with the world and it to me, would anyone be the clearer? What could any one tell from that “poor, bare, forked animal”? Only that I am a man born in the twentieth century with the ravages of time and circumstance written on my body.

But I can clothe that nakedness in any array, all of which has a semiotic, and no less so than my writing here clothes my naked mind with signifiers to those who read this. I am a man, my genes would declare me to be humankind after all, but if my ideas and communication are a poor enough signifier, the rest of me maybe lies in how I have come to the “now”, that is to say the actions I have taken, and others have taken that concerned me, either flowing with the grain of my perceptions and capabilities or against them.

All of which leads me to say as I frequently do, that I am what I am whilst still begging the question of what precisely "that" is?

Well… I am what I am today. Tomorrow I will be what I will be, and certainly I cannot change what I have been so far up to now, only build upon it.

Is this a good point to start a blog? Who knows? All I can say for now is I will not have any of the answers on my own. The door has closed on that as I said before. So all I can say to the world out there, is:-

“stop, look and listen”

Together we can change the future, so that the anxieties of this questioning become of no more import than they did when my life was secure and circumscribed, so that we can all be people who are accepted and valued, not questioned, condemned and rejected.

© Copyright to the Author Oct 1st 2005