Two big questions, and for all the talk of self diagnosis going about on the internet, most of the time in my life I do not see the autism any more than a neurotypical would see their neurotypicality, and for all of my life when I am on my own I am simply me doing what I do unobserved. I don't see the autism in the heat of engagements either because I am too busy figuring out what I am supposed to be doing, and it is only afterwards if I try and analyse it that I see the oddity, that which marks me out as Autistic in the eyes of the trained observer.
Well yesterday I wonder whether I was not annoying the fire brigade with my preoccupation with having locked myself out while they were busy fighting a fire, well I don't know?
Anyway this is why I post this video
(well not entirely the NAS have pestered me)
I leave it without comment except to say that I have certainly been seen to behave in odd ways on public transport, indeed it is noticable that so many of the viral videos from the NAS have also featured public transport, almost to the point of a shot for shot copy of the opening moments of Outside In substituting a red bus for a blue one.
There is a difference between my public transport footage and the NAS produced videos however, although the NAS material is based on interviews and real incidents my footage is live as it happens, there are no actors, it is absolutely real, and of course therein lies the oddity itself for who but an Autist could unselfconsciously walk onto a train or a bus with a camcorder and give a running commentary on what he sees to an unanticipating audience?
Well at least I have never been arrested for it yet.
I was just relaxing in my flat, having not long come home from Birmingham when there was a loud banging on my door. I went to my door and all I saw was someone scuttling off down the stairs, and then I realised, there was another fire in the block of flats, so I just grabbed my laptop, and a few documents from my top drawer, put my coat on and cleared off down the stairs before the smoke started, anxious not to be trapped on the top floor a second time.
Well fortunately the fire brigade came quick enough to ensure there was not the damage that happened in November, which incedentally has not been fully repaired yet, so I have not had to evacuate this time.
Unfortunately I left in such a hurry that I forgot to take my keys. I thought that a friend had a spare set but I spent a fruitless two way taxi ride to discover she had not :(
The Fire Brigade could have broken in for me but they would undoubtedly have done a lot of damage to the door, so I broke in myself using my trusty leatherman juice which fortunately I had in my pocket when I left. (anyone reading, this don't try it as normally the mortice lock is set as well as the latch.)
Hey I reckon I would make a nifty burglar.
Well I made a neat hole in my door so I could reach round and unlatch it, however I have now had to make a rather ugly repair, (and the door has been newly painted too) still it could have been worse.
I have a hangover, that's not relevant, but I am awash with ideas, and I feel after commenting in the same fashion on two blogs within the autism hub which deal with different theories of Autism, the one from our old friend and bogey Simon Baron Cohen, the other from the laughably named "Mind Institute", that it is worth repeating on my blog.
Essentially so many theories of Autism are being advanced that they are mutually insupportable. One might claim that one is right and the other is not, but in doing so one is not really making a scientific choice so much as a personal preference given that the mutually insupportable theories when taken as separate entities all appear in peer reviewed journals and are internally consistent with the notions of scientific investigation and statistical validation.
And if one wants to follow such ideas further one gets into the difficult territory of Wittgenstein, Quine and others as this critique of scientific method has a good grounding in philosophy (from whence science springs anyway).
Well to turn aside and get back to the main track, I will soon find myself teaching a module on a course constructed by my supervisor which investigates the position of autism in society. This is part of the Uni's BA in Childhood Culture and Education. Although this course is intended for undergraduates who do not have much of a background in Autism, it would be just as relevant to the likes of Simon Baron Cohen, Jenny McCarthy, David Kirby, and all the other popular pundits of autism who all mutually fail to understand just what they are really on about, who think they know all about autism when they only ever see the aspect they are dealing with directly.
And so for the third time today I will quote myself again: -
There is no single gene/cause for the categories "Artist" or "Scientist" each condition is contingent upon multiple factors because they are a human category not a natural one, in essence the reason why a single gene or cause will not be found is because "Autism" is also a human category, and as such is not "watertight" it leaks all over the place because that which is called autism is the confluence of many rivers and depending where you stand in the lake you might feel the influence and currents of any one of them more than another.
Therefore those who pin the argument for autistic's rights on the outcome of a science which can describe us in a positive way are on a hiding to nothing as the remedies are societal and to hope for a scientific justification is to bend science according to ones will, which of course is what all scientists and philosophers do anyway.
Autism finds itself wholly within the social model of disability for an explanation of how it is studied, valued, devalued or otherwise debated.
Do I have a new years message for the world as one year slips by into the next?
No not really, I have not the energy for it.
I leave the old year somewhat embittered by my experiences of it, what could have been a year of hope, but seeing what has happened to the economy, never mind the prospects for world peace, seems like one I will not wish to repeat.
I have had all the fight and the stuffing knocked out of me, all I can do is rant on like an ageing King Lear.
I have survived Christmas, but am not yet ready to fully engage with the new year and take up my usual responsibilities, both to myself and others. I am continuing to take a break.
My visit to South Wales was good fun, but the weather has not really been too good for seeing much else in the world.
I have my insurance cheque at least and need to use the car one last time to carry some goodies home from the new branch of IKEA, which has settled in the centre of Coventry as one 140 foot tall blot on the landscape, where once was a co-operative store where I used to shop when I lived oppositte to it in a housing co-operative. The words co-op mean nothing nowadays, but co-operatives were once seen, like credit unions as useful social institutions for the working classes to better themselves and gain some toe hold on economic equality. I still have my one pound share in the local Co-op, whose cider I must say is of excellent quality but that is a diversion (albeit a pleasant one)
Perhaps all that is left to me now is to subside into a life of drinking as much as I can whilst I can still afford it, and shaking off the demands of life, I don't know because I am not yet ready to assume them again.
So much to do and so little time to do it as ever, and what time there is, is wasted as it is pointless doing anything when your heart is not in it.
The picture accompanying this blog is local, from the Warwickshire/Oxfordshire border near Edge Hill showing the heavy frost and dullness that is the weather currently.
If such a thing is indeed possible in this world of crisis succeeding crisis :(
Maybe someone out there will have a better new year. For my part I am glad that the big Christmas disruption is over, it takes some time however to get back into a routine, and indeed to address many of those issues that have not gone away in the meantime.
So What!
I intend to have one last fling while I have a hire car, one journey into Wales is not enough, I am going back, but this time to the South before the year is out. Be warned, there will be photographs.
Here is my Christmas Card. (I am not very good at posting them out IRL) and below is a video cobbled together out of something else which probably is closer to the mood I am in. It's the winter, it's normal for me to be feeling down.
I have journey ahead of me, and when I return, I will look at life again in the new year and try and sort out what can be sorted, and as for the rest, well it is Terra Incognita .......
"Into my heart an air that kills From yon far country blows: What are those blue remembered hills, What spires, what farms are those?
That is the land of lost content, I see it shining plain, The happy highways where I went And cannot come again."
Well you would think having to abandon my home because of a fire was bad enough.
Well it is not the worst that could happen, no indeed, something worse has happened.
I was getting over it, ready to move back in next week, but I have just received a very disconcerting email.
Trivial for some, but not to me, because my research and hope of making something of myself academically has been the main thing that has been sustaining me through this current bad patch.
Well not any more because Research Autism has turned down my funding application, and frankly I do not see how I can continue without any funding at all.
I guess I ought not to say what I think of them at this current time, anger is never a good basis for a sensible post, but I will have a score to settle, that is for certain, how I go about it with common sense is another matter.
Well I do obsess a little about the significance of dates and numbers, and this is coming up to the tenth anniversary of my most determined desire to kill myself.
I wish I had, because all that the intervening ten years has held out to me is an empty promise.
Terra Incognita, the unknown land, that far country from whose bourne no traveller returns. Well the bourne beckons, and December 25th will be decision day, at least I am staying that long in this world, but really, I am not sure I want to be here next year, because I don't think I am going anywhere but a life of poverty and underachievment.
Did I survive for this? who knows what is written, but running up the down escalator is my progress, not otherwise.
Good job I am not drunk isn't it, but I still do have things to complete never mind how I feel tonight, and perhaps it is that determination that is the only thing that will keep me going.
Having limited internet access is what really sucks right now.
Well I am comfortable enough in B & B for now and I have recovered the things that are important to me.
All will be well in the long term, but in the short term, it is difficult for me to maintain my various responsibilities, however it is important to me not to pass my misfortunes on to any one else and let them down with regard to stuff I had arranged to do with them.
Talk about fifteen minutes of fame, our block was headline news taking up two pages in the local paper yesterday.
http://tinyurl.com/5ukmzk
More to follow when my situation is back to normal, sorry no video of the fire, safety comes first, but I hope to post a video diary or something on youtube :)
I have never looked smarter BTW, had to buy new clothes cos I only had what I stood up in, which smelt like a barbecued kipper.
Anyway my flat is relatively undamaged as I was furthest away from the seat of the fire, but if the fire brigade had not attended so promptly it might have been a different story.
The sh*t comes from dealing with all the bureaucracy you have to go through just to keep any kind of roof over your head.
I am through the worst of it now and have been able to go back and recover some essential items from my flat including my flute, documentation (which you don't even exist without these days) and my precious video hard discs which I was working on when the fire broke out and had to abandon.
The building is of course threatened with demolition, never mind it's historical significance, It was designed by Frederick Gibberd and is actually the prototype for Liverpool Catholic Cathedral, in terms of a circular structure with a lantern.
There is something unique about a circular market and I know of no other like it.
Yesterday in what I suppose must be a moment of madness, I submitted my DVD “Whichever way” to an assessment clinic at a local Institute of Videographers exhibition.
I was there to check out all the new equipment which I cannot afford, though fortunately I will be getting some editing equipment out of my Disabled Students Allowance as it is essential for my studies.
Anyway I told them from the beginning that it would be “different”
“Doesn’t matter, we have seen all sorts” the guy said.
However it was apparent right from the outset that it was to them jaw droppingly different, being as they are used to wedding videos, narrative stuff and that sort of thing.
Firstly they criticised it for being too wordy …. Well it is a lecture after all, but when I got to the end, the part where it is pure visual, they said they said it could benefit from a voice over, you can’t win, I took the voice over out on the advice of an artist who said I did not need it, the pictures said it all.
Then they criticised me for holding the same shots too long. Now hold on a minute, I have seen Tony Atwood’s videos, there is one camera angle throughout, not uncommon in a lot of straight to camera material that still exists in the genre. If I had stuck to the conventions of the action movie and never held a shot for more than 5 seconds the whole piece would look crazy. It is a lecture for goodness sakes, aimed at a reasonably literate audience, not action junkies with the attention span of a goldfish.
Then they did not understand some of the cut away shots that were there. Well I said, you are not supposed to understand them, it is a video about autism, some of the cutaways are meant to invoke a state of cognitive dissonance.
They criticised my delivery, reading from a sheet, well that was a deliberate Trope, that is to say, I deliberately made no attempt to engage the potential audience in vicarious eye contact, this is about autism after all.
Worse than that they suggested I ought to have got in a professional voice over artist.
Well again I said, what would be the point of that, I am autistic, there would be no authenticity you would lose all the voice inflections, and prosody of an autistic presenter, it might as well be someone else’s documentary if I did that.
They said that I could have cut out a lot of what I said, dumbed down.
Well again the point is to deliver a complex idea, a mini thesis as it were.
They obviously have not seen a great many educational videos, which would make mine look considerably more sophisticated by comparison.
I give up, NT’s want to see what NT’s want to see, they don’t care about the lyrics of a song so long as they can whistle the tune, they are not looking for depth and sincerity.
Maybe it achieved something, as I took the autism out to somewhere it was not expected.
It is interesting by contrast that many autistic people, whose opinions I have sought are seeing something else in the video, they are picking up the message of the graphics, and cut-aways and not remembering the text.
I can’t win but this in a way was a useful experiment, an adjunct to my research in fact, so far as it demonstrates anecdotally at least that there are differences in the way in which autistic people decode and understand video, what they are attending too.
Well I know that the video deals with a very difficult subject and one that is not popular, a subject I have been dealing with since before Stuart Murray wrote his book I might add, he will have seen the video first. “Outside In” which deals with a more conventional perspective easily outsells it. I can’t force NT’s to listen to the message I want to give them, and so often it has to be sugar coated and wrapped up in what they want to hear before you tell them it ain’t necessarily so.
You can bring a horse to water but you can’t make him drink, and I think sometimes trying to explain the rich beauty that can be seen in autism and that comes from autism, is the equivalent of trying to teach poetry to frogs.
If you are interested in a more general overview of the kind of videos I make you can visit my YouTube channel, it seems that the most popular is me playing the flute, maybe I really should pick it up and play it during my presentations after all.
Today I achieved something, that might not mean a lot to many people and for the world of me I cannot relate to Autism, but for the first time in my life after a year of learning I felt able to enter the deep end of a swimming pool and to swim 25 metres to to the end of the pool and then to swim back again toward the deep end completing the second length of 25 metres.
Now a year ago at the same time as I began my swimming lessons I embarked upon my doctorate and this weekend will be addressing an international conference and giving a way better performance than the token autie, Mr Stephen Shore I am sure. (at least I acknowledge that it is performance and I will entertain as much as I enlighten I hope)
However that is less of an achievement to me than my achievement in the swimming pool today.
All that I have done of course is to have achieved the basic standard that any 11 year old is expected to achieve and forty years late at that.
Well if anyone who attended Finham Junior school is reading this, A couple of years ago I met a former schoolmate who remembered me as the boy who never learned to swim.
How anyone learned to swim is actaully beyond me. For years parents raised money for what seemed to be a magnificent project to build a school pool. However by the time they achieved their aims the pool was nothing more than an open tank between the playground and car park.
We boys did not even have the privilege of a changing room, because the architects only built one, and that was reserved for the girls, we had to change in a corridor, and every week march barefoot in whatever weather across the tarmac playground to this open tank.
If that was not bad enough I was put off swimming for life by a teacher whose reaction to my reluctance to duck my head under the water was to hold it under.
Never mind that no-one ever appreciated the other difficulties I had with swimming namely a dyspraxic lack of co-ordination.
Well in my next school at least we had the luxury of going to the simply huge "olympic pool" in town, but by that time the damage had been done, and increasingly nobody bothered with the slow learner so I was sidelined, and gave up swimming as soon as I was able to.
What a loss that was as it is now something I really enjoy.
I have just come back from a disability studies conference where I was presenting. I decided to stay an extra day in the accommodation so I would not be so tired, to catch the train tomorrow, and since there was no meal or anything provided I decided to use the kitchen, to make myself a pot noodle, to stave off my hunger for the evening.
There were a couple of other delegates who were staying overnight too, and they were asking the usual questions, what was my research about, where did I come from etc.
Anyway there was guy who was staying there, by the name of Volker Schönwiese from Innsbruck University who said he came from Austria. So naturally I asked him if he had heard of Hans Asperger. Not only had he heard of him, he had been sent to his clinic as a 10 year old child
He was a wheelchair user, and when he was younger his family wanted him integrated into the mainstream school, but the authorities were resisting it, so he was sent to Dr Asperger for a consultation. Apparently Dr Asperger did all sorts of tests including an IQ test, and wrote up a report saying that children with Polyarthritis were extraordinarily gifted and he should be given all the facilities he needed to go to a mainstream school.
It was a white lie of course because there was no scientific evidence to support that notion, but it illustrates something of the character of the man back then, that he would write something like that into an official report to ensure that a disabled child got the same schooling as everyone else, and not the second rate schooling he might have got if he were sent away to a special school.
He said that Dr Asperger was a pleasant and very kind man. Sometimes it is a small world, and now I have met someone who met with Hans Asperger.
I have included a link to a pdf of Professor Schönwiese's presentation which may be of interest to people in the wider disability world.
I expect there will be trouble at'mill by the time some folks have read and digested this post ..
One of my abilities is the ability to think in pictures though images is probably a better way to talk about it, as there is nothing particularly flat or two dimensional about this. I believe this allows me to easily create analogies and to be able to approach problems from different directions, that would never occur to someone who has to construct everything in words. Which part of the neurodiverse territories this comes from does not matter for the argument here. I want to give you a little example illustrating the fallacy of trying to find a medical cure for complex neurodevelopmental differences.
I don't suppose many of you have seen either a Stevengraph, or know the workings of Jacquard loom. A Stevengraph was an elaborate silk picture, woven on a Jacquard loom which uses punched card to determine how the threads are all woven together. To see one in action as I have at Coventry's museum in the past is quite amazing.
Anyway if we were to consider the Stevengraph as the brain, we could see that the punched cards are perhaps the DNA, and the mechanical maintenance of the machine, that keeps it oiled, the parts fitting together properly, and feeds in the different coloured silk could be seen as the epigenetic or environmental factors that also have to gel to create the flawless finished product.
Now imagine one of these wonderful artefacts gone awry, perhaps with rivers of red silk running through it, or sections of the picture missing. How can you fix it? If you unpick all the silk that ought not to be there, or attempt to patch in what was missing, you will not get the original intended picture back, it won't have the same structure, it won't be the same at all. And to try and go back one stage further and discover just where it went wrong, if it is in the punched cards for instance, to discover which particular extra holes, and which missing ones caused it all to go awry would be a nightmare.
Well a Stevengraph elaborate though it is, is a lot less complex than the brain. You can no more expect to unpick dyslexia, or autism, and get the whole picture back, than you can unpick the silk. There is no easy magic pill. You can't just oil the cranks and get it to run right, it's more than that.
That is why I do not believe in easy medical answers and quick fixes. The medic is akin to the mechanic, trying to keep the machine running, not the designer who punched all those holes.
I often wonder on reading the parents blogs on the autism hub, if back in the fifties, before I was five, in an alternative universe where they might have been internet savvy and had the means to disseminate there joys, frustrations and perceptions of that puzzle that was the infant Larry - what would have appeared as a representation of my life?
How would they have conceptualised me photographically and textually within their limited knowledge then and what would I make of it reading it all back today?
I do not know the half of it even. I know the pictures at least but the text is lost, and even so what would it say about me today, about what I am and what I became. It would have been at best an incomplete story.
I can write my own story now, though my past has to be written partly by reference to my parents memories (such as I remember their memories) as you can see in autobiography, but what did I "write" back then before I could read or write and how did I negotiate my existence and self in the myriad of situations I was placed in? How much would have been true and how much construction?
Who knows and we never do, I certainly do not. It is unfortunate that my parents are dead now so this debate cannot be had at an adult level with them, but my wasn't I cute ....
I talked a little about criticism in my last blog, and was indeed critical of a certain genre of writing about autism.
I intend to turn aside from the sociological rumblings around autism and back to what seems to be everyone's favourite topic in the blogosphere, which is the science of autism.
I will be presenting a paper very soon, which is rather critical of that science, and I expect the that those devotees who see everything in science as either black or white will be muttering to themselves "There goes would be Dr Larry again, with his sour grapes, knocking everything down but not putting anything in it's place" I had similar comments on my school reports when I refused to take the standard theories of the day at face value simply because they came with the authority of the teacher.
Well for once I shall defer a little to authority, to a more experienced researcher than myself who has doubtless read more papers than I know existed.
Incidentally it is an article of his that gave me a lot of pause for thought when writing my recent paper.
His name is Dermot Bowler, and he has not long ago had a book called:
"Autistic Spectrum Disorders, Psychological Theory and Research"
Published by Wiley in 2007
Now whilst his literary style would not gain him an A* pass in todays A level exams, I should be the last person to hold that against him :)
There are a number of chapters there where he reviews the current theories and the studies out without interposing his own position too much.
I would just like to quote a couple of pertinent passages from the final chapter of the book where he talks about the somewhat erratic nature of all the research so far:
"Failure to replicate findings can be explained in a number of ways. Either the phenomenon does not exist and the initial, positive finding was a random event. Or perhaps there were differences in the samples used; one study may have tested higher-functioning or older individuals while another used those with lower IQ. Many studies have small sample sizes and as a consequence have insufficient statistical power to reveal between group differences. Procedural differences may also yield different outcomes......"
There speaks someone who has read many studies critically in the way they should be read, and he even includes his own work in that summary.
Further on he says at the very end of the book:
"The speculations in the last paragraph bring us back to the question of what it must be like to be autistic (See Frith and Happe 1999). Ultimately, the psychology of ASD must provide an answer to this question. But it must also provide an explanation. Readers who have made it this far (as well as those who have skipped straight to here) may be expecting such descriptions and explanations as well as a punchy take-home message. Without wishing to be unkind to colleagues in the field (or perhaps wishing to be unkind to those who often misinterpret their ideas), the message is probably that we are sometimes too quick to generate quick snappy messages and that we are often too uncritical of the work we ourselves do. Autism spectrum disorder is now known to be a set of conditions that should not be reduced to a simple dichotomy of presence and absence. When present the conditions are multidimensional and complex, and although they share the common characteristics of social impairment and repetitive behaviours (at least from the perspective of a typically developed person) they often exhibit additional features that are not necessarily defining features of the spectrum. Such complexity requires a more subtle explanation than a simple reduction to an absent theory of mind, a failure of affective appreciation, diminished sense of self of fragmented perception. The complexity of ASD requires us to take a more distanced view and to go beyond simply trying to find new ways of describing the fact that people with ASD are autistic Science is about the reduction of complexity to simpler sets of entities and processes that interact in ways that are controlled descriptions of the behavioural manifestations of ASD. The challenge that faces us now is to step outside our own narrow conception of the issue and to work out how they fit together and why."
It is very pertinent for me to be considering that too, at a time when I am currently trying to attract funding to my own research in the hope that I will in turn not replicate the faults of all too many small scale studies.
Had to be careful not to recycle an older title, but I am back to the subject of autism again for this blog.
For the last two years Autscape has either been preceded by or followed by an operation, this year I have far more to worry about on my return :)
Not that being part of the organising committee for Autscape this year has been the proverbial bed of roses either. How previous participants (as against new ones for whom it won’t matter) will adapt to the change of venue, I don’t know. It remains to be seen.
The trouble is nothing is without criticism, and this blog is not the place to rehash all of the various concerns about the venue, and about the ethos of Autscape, whether it should be outward or inward looking, been there done that and got the T shirt as they say. Suffice it to say I sometimes find myself in the middle, defending against unfair criticisms, but adding a few of my own. Nothing is ever perfect and we should always be striving for what is most important is that there are enough people willing to continue with it in whatever form the future dictates.
The theme is Inertia and Action, and sometimes I feel I am too much stuck in the former, I know that when I get back I have to spring into action again and finish off all those half finished presentations I am due to make in September notwithstanding trying to wrestle up some money to continue my research, without which these presentations might suddenly lose their context.
Where the big money in Autism is, is certainly not where I am at anyway, educational approaches to autism get overlooked, and the new black is going to be cultural studies, where yet another strand of non autistic academics find rich picking studying all those funny autistic "tribes".
I ought to have welcomed Stuart Murray's book on the representation of autism, but I do not, because well researched though it may be, it is part of a wider economic/social process of marginalisation which I have fought even to get a toehold in academia myself. Every book that is written about us by someone else is one less book written from within.
Why don’t I write a book myself, I hear the protest back, well it has to do with the fact that the likes of Stuart Murray, and Roy Grinker and dare I say it Kristina Chew (whose blog I nonetheless enjoy), have effectively colonised the genre wherein I would write.
I mean no disrespect to these academic writers but I do say to them that they ought to carry a bit more social awareness of what they are doing in the process, how it is part of the delegitimisation of the authentic voice, pushing us back to the familiar territory of writing self help manuals and autobiographies, instead of engaging the vital material of autism and where we fit in the contemporary world itself.
As followers of this blog might know, I recently had to give up my land rover, not by choice but by financial necessity. Well I can at least say I feel I have done something for the environment even if I would not have done it otherwise.
I see the news and it distresses me, story after story about melting glaciers, extinction of corals, and I am not distanced from that because I can see close at home the waste that contributes to it.
Gordon Brown was right that we waste too much food. I remember growing up before supermarkets when there were few brands and less packaging, I can't say I grew up malnourished or deprived because of that, any more than I was deprived because my dad did not own or drive a car.
Today I watched once again the world on wheels, so many cars and wondered where they were all going, and why, and just how this might look on a global scale. To be honest I was on a bus at the time, travelling across the city to a swimming pool so in a small way I am still part of that great daily trek that seems to put all other transcontinental treks into insignificance because of it's banality.
We can't help the way things are, because everything is organised around such treks and we can't avoid them, though at least I am using public transport and my bicycle more.
We are past the point of no return and with the coming recession we will all feel the negative side of our past exuberances there is no escaping it, and it is better to give up some things voluntarily in the interest of posterity than to have it forced upon us by inevitability.
I have turned off my hot water, I can't afford it, but at least I still have water, and that is going to be something that millions do not have, it already is. So much we take for granted is predicated upon continuing power supplies, the recent floods in Gloucestershire demonstrated how much we take for granted and how reliant we are on electricity for everything.
Back in the 1970's I recall the three day week and the winter of discontent, with regular power outages, but the shops still opened and did business, even the supermarkets, with tilley lamps and generators, but it could not happen now in this day of the swipe card, where even a disruption to the telephone lines means no sale.
Well in another couple of weeks I am off too Autscape, I am hiring a car to get me there, so whatever the price of petrol I am going to have to pay it and join the world on wheels again.
I might be getting away to autistic space, but that space will still depend upon electricity and piped water.
When I am done with Autscape however I will be done with that. I am going camping, roughing it, a simple tent, and no more water than I can carry, my bike will come in handy then.
My land rover was perfectly equipped for survival, solar panels the whole lot, trouble is it still needed an MOT and there you see it had to go because it would have failed. Unless you have land to keep one on, you have to keep it roadworthy and taxed. Doesn't seem fair, there was a time when my family were considering buying a piece of woodland somewhere, oh that we had.
Note that I am just back from IMFAR and about to relax in a hot tub. When I have more time to do so, I hope to hotlink to papers, presenters, people and the issues I write about here, so come back in a couple of days to see how I have expanded this.
There are two mains things I can say about IMFAR, one is to give a report, or summary of the presentations, and posters, what my general impressions were and what I think was important and what was not.
The second, is to speak of my other role there as an advocate and ambassador.
During the presentations I was both, I wished to ask relevant and challenging questions of the science and the methodology where appropriate, but also at points to challenge the ethics where necessary. For example a study that was taking samples of CSF. I told the Dr behind that, that I thought that it was an unethical and intrusive measure considering it was not medically required. It raises all manner of questions about what is informed consent when dealing with minors and people who have impaired social understanding, heck I have been through the ethics meat grinder myself, so I ought to know.
Anway, I think the Introductory keynote speech by Frankie Happé was enlightening, she has come a long way from the article in Uta Frith's book, that 'dissects' the autobiographical style of those few published autistic authors there were back then.
She was questioning the single etiologyof autism, and talking about multi axial conditions converging in autism. I challenged her to think even further to think beyond a triadic axis and to what it might look like if you forget the strictures of DSM IV TR.
There was an interesting 'round table' on diagnostic schedules, ADI ADOS, DISCO, Class’ battery etc. (can’t remember the name of the other one of hand, brain fade)
I raised numerous points about the inevitable restrictions of defining something and then only looking at what you define as within it.
The biggest challenge came on the second day with Geraldine Dawson’s key note speech. The Chair for that session was not allowing questions, so there was no roving microphone, but I was not going to be stopped from asking the question I wanted to, on ethics and respect.
I started by referencing an article in this months Journal of Autism and Developmental Disorder, which talked about autistic subjects and “healthy” controls
Did this not say something about an attitude towards ethics and a lack of respect that the science was dealing with real people who deserved that respect, as her peer researcher Morton Gernsbacher has pointed out.
What shocked me, and the audience I guess was not the answer, nor my mode of asking the question, as I was insistent but I don’t think rude, was the reaction in the audience from Matthew Belmonte, who immediately got up and bellowed that he was “tired of hearing that crap” and the usual complaint one hears about HFA’s not caring about non verbal and less intellectually capable autistics. Well that put me on the spot as it was difficult to avoid the proceeding degenerating into a 'Punch and Judy' show, but my response if I can recall properly was to say that I was misjudged by being automatically put into a ‘schema’, by someone who did not know what my involvement was across the whole of the autistic spectrum, a responsibility and duty that I have because of my position in the NAS never mind the many times I have challenged ‘Aspie supremacy, myself as hub members will be familiar I am sure.
Anyway it wasn't my intention to disrupt anything, merely to ask an important question at a point where that ought to have been allowed in the agenda.Whatever, it put me somewhat on my guard for the rest of the day, however as a paid up student member of INSAR I did not neglect to raise the issue again at the end of the AGM and attempt to correct those misunderstanding of what I mean by respect. Something I don’t intend to let go of.
By the third day, I was worn out, couldn’t take in any presentations, certainly not really feeling competent to question and challenge any more, so I spent my time seeking out posters and speaking to those who were present to explain them. In fact I think having the poster presenters able to speak to their posters was a somewhat better means of exchanging information than the formal presentations.
At the end of the day, I was there to hear what is current, and seek out what is relevant to my own research and to follow that up, and besides the advocacy which was important, there were other researchers in fields that have a bearing on my own hypothesis who I wished to make contact with and exchange ideas.
As for any of the parties who were present for the event and are checking up on me via my blog. I expect eventually the paper (whose abstract I had submitted during the call for papers earlier this year) will eventually see the light of day somewhere. Most likely in an open access journal, because of my own ethics. You will have the opportunity to hear me present on my own Research during the NAS International conference later this year, and I promise to make it entertaining as well as informational as befits a media studies graduate.
Blatant self interest prevents me from saying more at the moment other than that I am not entirely satisfied with the conduct of the University (or the veracity of the publicity)
I dare not say much more about that and will leave you all to draw your own conclusions, but if the Uni cross the line too far I will cross over to the other side as well. I value my integrity more than I value a doctorate, and in the end it is the truth (whatever that is) that matters.
Of course my issues with academia do go beyond blaming Birmingham individually as I have even larger issues to take up with the academic paper chase for hubris that actually penalises those who think they are cool when they have been published and peer reviewed. If academics had a Union like the journalists do, then Reed Elsevier and the like would be quaking at the economic power they might have to concede in the interest of preserving both the authorial integrity of the originators of intellectual property, and the right to disseminate that as widely as it needs to be without the censorship of the proprietary rights grab.
If I were ten years younger or more (those grey hairs) I would be leading a rebellion. The times they are a changing, and if peer review is to retain respect, if contributors are not to be cowed and intimidated by the academic publishing equivalents of the Murdoch's and Maxwell's there needs to be a new way.
Open Access as currently set up may be an answer but it needs to have the best aspects of objectivity, freedom of access, and decent peer review as well. Open Access without peer review could be too much of a quacks charter.
If this particular post disappears overnight you will know that pressure has been brought for me drop it.
My full name is Laurence Benjamin Arnold FRSA and if my life were ever made into a movie, most of it would not be believed. I am what I say I am, forthright and blunt and that is the way I get things done.
