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"

"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

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.

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.

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 ...

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?

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?