Tuesday, December 29, 2009

Being Prepared

I am not an "end of the world as we know it" died in the wool survivalist inspite of owning a 4WD, but a number of events over the past year or so have shown up the need to be prepared.

Firstly I had to evacuate after a fire, and did not take a lot with me, I was not much better prepared the second time either when I left altogether quicker than the first time forgetting my keys to let me back in again when it was all clear.

I now have a fire evacuation bag packed with the most essential things packed, including spare keys. It contains insurance documents, cheque book, essential clothing and all those essentials I would otherwise have to buy, and what is in it is not based on any hypothetical shit hits the fan list, but on what I had to buy last time.

I could if I had to, leave my flat naked like Archimedes straight out of the bath, grab the bag which is always by the door, and be able to make myself decent in the meantime from the contents of the bag.

However my more recent emergency showed me that is not preparedness enough, because I was faced with a different kind of emergency where taking that amount of junk was simply not appropriate. So I have resolved to pack a hospital emergency bag now, which contains the basics you need for a short stay in hospital, pajamas, slippers, clean underwear (yes I know - as your mother always told you - you are supposed to be wearing it, but you will need a change) basic wash kit, and a cheap novel aswell.

Apart from that long experience has taught me to be prepared for other emergencies such as power outages, Having grown up in an era which included the miners strike and the three day week, I always have a supply of candles, hurricane lamps and fuel, and camping stove. I actually have more than this in that I have my usual camping gear as well which includes chemical toilet, 12v gel battery, lamps and solar panel.

I have to admit however I don't yet have any defense against the proverbial Zombie attack, that is something I shall have to work on :)

Thursday, December 24, 2009

My journey to Wales, Will it happen?

If I had not been derailed by my hospital stay I had planned to be driving off to Wales today. However looking outside at the icy roads and the fog, I am not sure I would not have changed my plans anyway.

I am pretty determined to go tommorrow which will mean starting early in the morning to get enough daylight for photography, but again I think I have to pay regard to the weather.

I had a long conversation with my brother about many things yesterday. My recent scare was a scare to him too, being as he is the one who will have to pick up the tab if anything happens to me.

We talked of this old story in the Arabian nights, where a guy sees the grim reaper in the Marketplace looking at him, so he gets on his horse and escapes to the furthest reaches of the kingdom, only to meet death there, who expresses surprise that he had seen him so far away in the morning when he had an appointment with him elsewhere.

In other words I have more chance of coming a cropper on the roads than succumbing to a heart attack, so it is a matter of common sense and taking another opportunity to visit Wales during the Christmas break if the weather is really against it. It's not snow that bothers me, but ice and fog, and also being sure that the beta blockers I am on, do not impair my driving in any way.

I'm driving round to the shops later to fill up on diesel. It may be I don't get so far as Wales tommorrow and will go for a shorter journey instead.

Tuesday, December 22, 2009

Reports of my demise have been greatly exagerated (a close run thing)

You will note that my recent postings have had family very much in mind.

I will now relate what ultimately happened to my Dad as a preamble to what has just happened to me.

In August 1985 at the age of 58 my dad was at his ladyfriends house hanging a picture when he experienced chest pains. He thought nothing of it at the time, but the pains continued throughout the afternoon. In the end it was so severe that he called an ambulance and was rushed into hospital. He had experienced a heart attack out of the blue, a week later he was dead of a second massive heart attack.

Well Sunday Evening I was sitting in my chair over the computer and I experienced the combination of chest pains and my heart beating very rapidly and hard against my chest, as if I had just run up a flight of stairs.

Now I am not actually unused to heart problems, I have been twice to emergency before, first time with an irregular pulse and the second time with the combination of an irregular pulse and chest pains. In each case I was inspite of the discomfort able to walk to emergency, and although I did have an irregular rhythm it was diagnosed as 'benign' and a subsequent referall to a cardiologist assured me of that.

What I felt on Sunday was different, it didn't feel irregular it was too rapid. Normally if you have a rapid heart beat that is just part of the bodies flight or fight response, brought on by some anxiety, if you fly with it, that is to say get up and go for a walk, it will settle down. Well this did not, I could not even walk about the flat without it getting worse, and there was the chest pain too and it was not going away any time soon, so I decided it was time to call an ambulance.

By the time I got into emergency (and it is nothing like you see on television,if you are brought up on a diet of casualty, ER, and House it is mostly boredom and nothing happening at all) my heartrate had slowed down somewhat and by the time I was hooked up to the monitor there wasn't anything unusual or scary to see, which was reassuring. However the pain still needed investigation and I was for a chest X ray, In addition the Dr wanted to keep me in, because the only way to establish beyond doubt if I had just sufered from a heart attack would be to carry out a blood test which they have to wait a certain number of hours for whatever is supposed to happen to happen before they test for it.

I then had a 3 hour wait on my own in the cubicle while they found an empty bed. (the usual situation at this time of year, with the cold snap there are a lot of falls and a lot of respiratory diseases.

Well the arrangement of the wards is into 4 bed bays and at 54 I was by far the youngest in my bay. What was rather traumatic for me, apart from worring about myself was the flashbacks that the guy next to me was causing. From listening to what the Dr's and his relatives were saying, and the fact that he was on oxygen and clearly having breathing difficulties, he was a man of 71 with chronic emphysema, complicated by pneumonia, and he was not well at all. It reminded me all too much of my mum's last hours in hospital in very similar circumstances, it also showed me in retrospect how little chance of survival my mum had, when they brought her in, the dr's suspicion was probably right she was in the terminal stages, because she was in a lot worse condition than this unfortunate gentleman, who during my stay was showing signs of improvement and stabilisation.

Unfortunately for me, quite apart from the poignant reminder of less happier times for me, the noise of his oxygen was keeping me awake for the two nights I was in.

I could complain that an autistic with sensitive hearing should not be in that situation, but the truth is, in an emergency you need a bed, wherever it is and if your life is at stake (as it might have been) you have to go with it.

Well in truth this wasn't the worst at all, the worst was being brought in unprepared late in the evening by the time you have a bed, and missed all the meals and usual hospital rounds. Then there are the bright lights, and other sundry beeps and noises, and above all not knowing what happens next.

I would have appreciated knowing at what times I would be disturbed for monitoring temperature and blood pressure, what times the dr's come round, what time the meals were. I was left to figure out for myself how the adjustable bed worked, and where the emergency call button was, in fact I didn't find that until the middle of the next day.

Another annoying thing was the cold. I was just left on this bed initially in a hospital gown and single sheet, there wasn't even a pillow, I had to ask several times before I was brought one, and is little wonder every time a nurse asked "have you any pain" I could say "Yes my shoulder" For the first night I was freezing. Only the next day when I was up and wandering around in my gown did the nurses find me a pair of pajamas and then some extra blankets.

The hospital didn't get it right, they did not take the blood test at 7 am in the morning as they were supposed to, and of course it didn't come to light till after the Dr's ward round. I had to wait till 4 o clock, which was some 3 hours after I had been assured that they were coming soon. Worse that that I had been told that if the test was Ok I could leave that evening. (I wasn't really keen on staying as I was getting extremely worried about my flat being left in a hurry)

Anyway I had been told that the test results should take a couple of hours, so I duly started counting the minutes. Needless to say well over two hours later the results were not available. Indeed I was eventually told that even if the results did come in that evening I would still have to stay in overnight, because the Dr's had gone and would not be back till the morning to officially discharge me (if all was fine)

Fortunately I had some extra blankets by this time, and had been fed at the proper mealtimes, having had nothing but sandwiches to eat the day before as I hadn't yet eaten at home when I called the ambulance)

Well I couldn't sleep and spent a lot of time pacing up and down the corridor outside. I was feeling physically better by that time, normal heart rate and B P so at least I could get up and wander about so long as I did not wander off the ward altogether.

The Ward sister told me before she went off duty for the night sister that the results had come back and she could look on the computer for me. I was a bit nervous in case they were not what I wanted to hear, but fortunately they were clear, so at least I could spend the rest of the night in some certainly that I would be able to go home the next morning.

And so I was pretty eager to get the silly needle out of my arm (put there as a matter of routine in case I needed anything intervenous, but made life rather uncomfortable) and to get dressed.

WEll early in the morning I left, they informed me they had emailed my GP, so I did not need to wait for a letter to take down to the surgery.

So I went home, called in the surgery on the way and booked an emergency appointment for later on.

By the time of the appointment they hadn't got the email yet.... but I was able to explain what had happened, because I was concerned that this might happen again, and what was I supposed to do. He prescribed me beta blockers (which I have had before, for occasional use, though not having felt the need for some time, my prescription had lapsed and was out of date.

What should I do if the same symptoms re-occured, I asked. Call an Ambulance he said, that is what he would do in the same circumstances, the fact that it may have been a false alarm this time does not mean it will be the next, and far from being worried about calling an ambulance uneccesarily I should be concerned that it always is always better to haved called one and the symptoms turn out not to have been a heart attack in retrospect, than to have had misgivings about calling one and died as a result.

Saturday, December 19, 2009

Not all research is cause or cure

Here is a report of a recent piece of research undertaken at my Uni.

No best approach to education for all children with autism

There is no one best approach that can be used in educating all children and young people with autism, according to a report by researchers from the University of Birmingham’s Autism Centre for Education and Research (ACER) and St. Patrick’s College Dublin, published today by the Republic of Ireland’s National Council for Special Education (NCSE).

The report is an international evaluation of strategies employed in educating children and young people with autism, based on using a set of rigorous guidelines to evaluate the latest studies from around the world, published between 2002 and 2008. It also includes data from policy and best practice guidelines from the United Kingdom and Ireland.

Dr Sarah Parsons, from the University of Birmingham says: “Practice has outpaced research. Although experts agree that a range of special and mainstream provision is important for children with autism, there is no clear evidence from research to help families and practitioners decide which kind of school will be best for their child.”

The report reveals major gaps in the research base for interventions commonly used when working with children on the autism spectrum. There is a particular lack of research regarding good provision for secondary students and those in post-compulsory education.

“Researchers need to address these gaps in the future and ACER has plans to develop research bids which focus on some of the key areas highlighted in the report,” Dr. Parsons stresses. “There is a growing consensus from expert opinion as to what constitutes effective practice, and several sets of guidance have been produced by different working groups in education and health which are very helpful, to parents and others, but these need to be complemented with evidence from robust research studies.”

The evidence base for good practice in transition between settings and stages of schooling needs strengthening, the report also reveals.

The new report will be relevant to practitioners, policymakers and families worldwide. It will be available on the NCSE Web site (http://www.ncse.ie) from today.

You see there is more to research than the bogus science too oft reported and debated in this corner of the blogosphere.

Congratulations to Ari Neeman BTW, we need someone who appreciates the social model of disability to counter the bull being spread by NIH in the USA.

Monday, December 14, 2009

Laurentius in Winter.

I don't know how many people are familiar with the "Lion in Winter".

It depicts the troubled relationship between HenryII, his wife and their rebellious sons.

Well sometimes Christmas back home was like Christmas chez Henry as depicted in the movie.

To be sure I have some distant memories of childhood Christmases, waiting for Santa to come down the chimney, Christmas trees with the same baubles year in year out, and wondering where they went. (The tree in a bin and the baubles back in a cardboard box in the loft kept well out of reach of childish hands)

It is however the later Christmases of adolescence and early adulthood I remember most though even though they were one long haze of alcoholic overindulgence and family squabbling, it is no exaggeration to say that knives were drawn on one occasion (just like in the movie)

And when my dad was no longer around my brother and I would fight it out instead. There was one occasion when we were all drunk, my mum included, and a fight broke out between me and my brother, fisticuffs, grappling that sort of thing. Now bear in mind my mum was disabled and used a wheelchair by this time. She managed to stand up and then toppled onto the floor, she was too drunk to remember that she couldn't walk. Well by that time my brother and I were also on the floor, and the three of us just fell about laughing, the whole thing was so absurd we forgot whatever it was we had just been fighting about.

Things changed however after my mum had become so disabled she could not cook anymore. I remember trying to cook a proper Christmas dinner under her supervision (she was a trained and qualified cook) but it was something of a disaster.

After that we decided (apart from a few Christmas decorations) that we would not celebrate Christmas in the traditional way anymore and would instead take a packed lunch out for a Christmas picnic somewhere away from it all.

From 1987 onwards that away from it all had become regularised into Lake Vyrnwy in Wales, and that is where I still go every Christmas, this year will be no exception.

In case you have forgotten watch this space.

Sunday, November 29, 2009

"It is a tale told by an idiot, full of sound and fury, signifying nothing"

If I have had it bad I should look at my dads life.

Before the second world war he had already lost his own dad, a drunk, who drunk away the profits of his bootmakers shop. Before long he was to lose his mother too, a diabetic. He always blamed himself for her death, because her last request was for a bottle of stout, which my dad duly delivered to her. He was sure it killed her.

After that he spent a life on the move between his elder sisters and brothers, heavily disrupted by the war.

By the age of 12 he had already left school, so many children were being evacuated he figured they would never notice if he stopped going.

You will notice he spent his war in Coventry, and experienced all the bombing and the Blitz.

I recently saw a play at the Belgrade Theatre entitled one night in November which tried to recreate those events. (curiosly I was a refugee myself when I saw that, having been temporarily driven out of my flat by fire)

Well my dad was driven out by a bomb. Later on during the war he got into uniform for the first time as a boy messenger for the fire brigade, dangerous work, and by the end of the war he was called up and posted to the middle east, where during the troubled post war era he served in Palestine. It wasn't any different then, the equivalent to a posting to Iraq today, he had to carry a concealed sten gun whenever he got any leave, and was once mistaken for a terrorist when he forgot the password to get back into camp.

To top it all, he was probably autistic, one of us, Is it any wonder he turned to drink?

I am not making any casual retro diagnosis on my dad. I know sufficient of his character, his reactions and bearing to see myself in him, and he had enough contact with the psychiatric profession in his life, with two stays in mental hospitals.

His diagnosis eventually was personality disorder, but I think had he lived a little longer to see my diagnosis, he would have been rediagnosed with AS.

In any case he did not realise what a stigma personality disorder was in itself, but insisted he was not mentally ill.

My mum on the other hand did not understand these distinctions at all, she could not understand why he acted the way he did and called it mental illness.

She used to tell us children there were two daddies, a good daddy and a bad daddy and that the bad daddy could not help himself, while she put up with the beatings and the smashing of furniture and all the other fun of the fair that made up our normality.

I later joined in the smashing of furniture myself, why not, it was really crazy sometimes with things flying through the window, including an antique 'marble' clock. I had a recent conversation with my brother with us trying to recall who threw what and where :)

From that you can conclude that my mum had a difficult time, never mind what later became of her when she contracted rheumatoid arthritis and finally left him, to be looked after by me, of whom she was also sometimes afraid, because I had not given up the furniture smashing habit. We argued over many things, including disability politics, and when I got worked up I went out into the garden and just broke up whatever was out there, (helped to get it into the bin anyway)

My mum feared I had the same 'disease' as my dad. After some dealings with psychiatric services I decided to leave that alone, and never sought any more "help" until after she died. I was wise enought to fear the sort of lable I could end up with.

Well my dads behaviour was none improved by drink. He was a nice enough bloke when sober, but once he lost his temper, it was off down the pub, come in rolling drunk and prolong the argument all night sometimes or until he became insensible.

Now I seem to have painted a very unpleasant picture of my dad, but the truth is more complicated than that.

He was fundementally a decent bloke, he was just dealing with forces he did not understand. He was well liked by his workmates, although he hated his work, it was a noisy smelly factory that caused continual stress because of his sensory sensitivities, something that allowed him to understand me somewhat better when I reacted spectacularly to things like the toilet flush, or the vacuum cleaner. He took my side in school disputes explaining that I was reacting in pain to noise and that I could not help it.

He was a singer and a musician, although in frustration he more than once smashed his instruments (he ought to have done that on stage and one upped Pete Townsend) and he was a keen photographer, my best days with him spent cycling and walking in the countryside with a camera, later spending the evening in the dark room developing the results. At least that gave my mum some temporary peace from the both of us.

So what can I say. Is domestic violence forgivable? Well probably not to the extent that it should go unchallenged. My mum later worked at a refuge for 'battered women' as it was termed then, she turned that adversity into strength and that formed the groundwork of all her later voluntary efforts, deep down she loved my dad, they were just incompatible and he was thoroughly conditioned by a false expectation of social norms to understand what domestic life should be like. He had nothing to model it on, but the movies, and to him the man should be master in his own home, and was entitled to chastise his wife, a fundementally victorian morality.

His dad was a Victorian, who spent his first 25 years in the reign of Victoria an exact contemporary (and companion) of my great grandad on my mum's side of the family. This is his picture, he looks quite avuncular, he was probably drunk at the time, rumour has it that he was drunk at my dad's christening, he would have given him his own name 'Benjamin' but all he could muster was Ben,.

Even before he married my dad was known as eccentric and difficult, my mum's parents were against the marriage but they relented and she was married at just age 19, hardly experienced in the ways of the world, is a disaster looming of titanic proportions.

What can I say about my dad's drinking? I hardly know anyone who drinks at all who does not drink more than the miserly recommended limits at least once or twice a week, I am no example to criticise in retrospect, but it has to be said my dad took to drinking as a refuge from domestic life

From his perspective he could not understand women, he had not had much experience of them before my mum other than his sister's dominating influence in his life. His first sexual experience was with a prostitute in the army, something my mum did not forgive in him when he revealed that during one particular drunken row. There are more dark secrets there, of marital infidelity. My dad could be a jealous man,and was jealous that other men (his friends) found my mum attractive and easy going. My mum found friendships in general a lot easier than my dad, people just liked her and some more than that, she had been accused often enough that she the accusation became reality in the end, but then by that time the marriage was all over, and my dad was also looking for a replacement in bed.

The army was his only stability, and he wanted to run his home on army lines when he got married, and my mum was too independant for that she had her own ideas.

Things could have been very different, if they both had a greater understanding of things that simply were not known then in the foreign country of the past.

My dad had a life every bit as difficult in it's own way as my mum's shortly after they met he spent months in hospital recovering from Meningitis, illness was no stranger to him, he had had childhood diptheria too.

My mum also had a disrupted family life, during the war she had been evacuated to no less than 3 different locations, and ended up moving back into Coventry with her Aunt because there was no room at home, I don't think she had much idea of what family life should be like either and was somewhat mesmerised by my dad's charismatic mask. He spoke foreign languages (Arabic, Polish and German) he played in Jazz bands, was a friend of Ronnie Scott , George Melly and Humphrey Lyttleton, going down to London and playing on the river boats where:

"Everybody knew everybody. We all squeezed on to a little boat which chugged up-river to Chertsey. At the locks there was jiving on the tow-paths. Beryl Bryden swam to enthusiastic cheers. The music and the moving water, the bottled beer and the bare arms, melted into a golden haze. The last defiant chorus from the band as the ship turned in midstream before heading for the pier in the warm dusk sounded really beautiful". and seemed to her to be so sophisticated." (George Melly)
He seemed so sophisticated, and Beryl Bryden quite shocking as she recalled.

Well was it worth it? If it was not there would have been no me here to tell the tale!

All in all my dads life was a tragedy of Shakeperian proportions, such unfilled talent that he never had the breaks he deserved and wanted more than anything that his children should have a better life than him and never have to endure meaningless toil in a factory. We were part of the tragedy too, because neither of us suceeded at University in his lifetime, he saw us becoming increasingly distanced from him, and his final diaries some of which I have read, others which my brother has and destroyed because he thought they would be too painful for me to read, tell of his alienation, and his fears for me, that I would never be able to make it in the world of work at all, I would never marry and would end up on the streets.

I could go back and say that for all I know his Dad led a tragic life too, there are suggestions of family difficulties going back yet another generation, and it is of course impossible to speculate what traits of autism, my grandfather carried, suffice it to say, that among his six children, my dad was not the only odd one. Maybe I shall save that for a later chapter ......

Saturday, November 28, 2009

On the psychiatrists couch

My recent classic PTSD reaction to a recent posting on Facebook, bringing back painful flashbacks of something far in the past, has given me to much reflection, and my blog is about to take a somewhat dark turn as I confront and try to out the many demons of my childhood that still have the power to possess me with fear, shame and emotional pain.

Now this is still going to be an autism relevant blog, but what it will not be is a blame the parents blog, because I know that ones childhood takes place in a social context beyond the family where people are effectively conditioned by class, upbringing, education, media and general cultural ethos into a set of beliefs embodied in the zeitgeist.

It is my belief that many parents turn to biomed as a reaction to the evils of the Bettleheim era, and to many genetic implication is still a form of blaming the parent.

Well I am also aware, and have been since my diagnosis that there are a variety of perspectives on everything. I see it from the inside in one way, my parents saw it in another, and people outside the family looking on at my parents often difficult marriage saw it another, taking sides as they saw fit.

That is why it is very difficult for me to embark on what I am about to do.

Some of it is already hinted at in the autobiography I provided back in the days when a geocities page was the thing to have. I wrote that post diagnosis as a personal journey into my past recontextualising in the light of what I had recently learnt of myself. Perhaps I was wrong to do that, but it is too late now that so much of my life is already out there for people to pick at and come to there own conclusions, coloured by whatever experiences they have had and how they look at the world in general.

It has been the basis of a disagreement I came to have with an author, who gave my web pages added publicity by including material from them in a book. I felt later that there was a danger that by saying some things about my dad that could be more wideley read than the internet, might rebound on me because I feared the hostile reactions of people who were my dad's friends, and who had seen him in a more sympathetic light than I was forced to view during family rows and disputes.

I mistakenly believed by allowing my words to reach a wider audience that might enhance my prospects of following the likes Of Donna Williams, Wendy Lawson, and Lianne Holiday Willey and becoming a writer myself.

Well let's just say I was naieve at the time, and was mistaken. I have since come to the conclusion that if I have any ambitions as a writer left, it is to be a scholarly writer and not a sensationalist autobiographer.

Which is why it is going to be so awkward now to turn back to some of those things in my childhood, inevitably related to my autism and other 'disabilities' or 'difference'

To deal sensitively with the outside as well as the inside perspectives, and not to lay the blame on anyone for my parents sometimes rocky marriage, or the still traumatic events of my schooldays which have been revisited to me last night.

These things happened, and I cannot be silent about them forever. I make this turn in order to excorcise those demons.

The link from today's blog may be puzzling some, what it has to do with the Coventry Music scene, well the article mentions includes a picture of my dad lifted from my former geocities (RIP) web site, which shows that local people, my dads friends amongst them have read it, and I feel sorry for what I said about him and want to make some ammends now, by attempting to dissect the whole social context of what led to those difficult times without invoking the whole sorry farce of blame the 'aspie' husband.

Sunday, November 15, 2009

Another ten minutes, another 9 years

Here is a companion piece to "ten minute roughcut" I made all of two years ago now.

This is also set around an NAS AGM. At the time of "Ten Minute Roughcut" I recall the board was just being introduced to the various top candidates for Chief Exec, of whom Mark Lever was chosen.

Well it is altogether 9 years since I went to my first NAS AGM, and I did not know what to expect from the organisation. It has changed, but I am not altogether happy with everything as will become apparant from the clip.

In reply to Socrates, later this week I am going to the launch of a new NAS branch in Coventry, a branch formed by autistic people, that was unconscionable 9 years ago. I have always refered to the NAS as a dinosaur for a very good reason, it takes a long time for anything to get from the head to the tail, and some branches are very much the dragging tail of the dinosaur when it comes to dealing with Autistic Adults. However I would like to think this new branch might end up shaking the beast from the tail end too.

Linking Socrates' concerns back to everyday life and experience, some branches of a big chain like the co-op give worse service than others, however the one cannot be responsible for the other, the structure is loose, and in one way what happens in branches is the responsibility of the branch not the body as a whole, although of course it is shamefull if the activity of one branch causes people to reflect badly on the whole.

We do have a great deal more parity in the organisation, gone are the days when the constitution effectively limited our numbers on the council because we were unequal members, however what people did not realise at the time, the restrictions against non parent members were created to keep professional influence at bay.

Well I feel the NAS is about to take a step backward in that respect, so far as allowing a potential professional advantage, which has already had the unexpected and probably unintended step of ending my tenure on the board.

Here are my usual hotel room ramblings and my question to the Chairman, posed the following day.

Judge for yourselves from the answer.

Sunday, November 08, 2009

Danger and Fear

I have a confession to make, I like to read travelogues about danger and hardship, especially from the comfort of my armchair. I was recently googling up the Yungas Road in Bolivia, reputedly the most deadly in the world and I can believe it. I am not at all sure I would want to risk driving it.

However it set me to thinking about perceptions of risk. Everyday we walk along pavements, sometimes by the side of very busy road where stepping out would be certain death, the pavement may not be very wide, but do we think about it? I would hazard a guess if instead of the road to ones side there were a vertical drop of several thousand feet we would be stricken by vertigo and find the route much more difficult.

For what it is worth I have driven roads as difficult as the Yungas Road, there are loads of them in Wales, even narrower in parts, the difference being that there is not the traffic, and not the same degree of sheer drop. Mind you a couple of hundred feet, or a couple of thousand, does it make that much difference once you are off the edge?

Perception of danger is clearly relative, the picture at the top is not the Yungas Road, it is the Bylch y Groes in Wales, the two below are the Rhos Y Gwaliau on the other side of the mountain.

Below is the Yungas road and I know which ones I am going to stick to :)

And for good measure, added last night, me driving one of the Welsh examples.

Wednesday, November 04, 2009

A tale of two rivers

I suppose I ought to comment on the current topic of debate, the disapearing trajectory of Asperger's (syndrome, disorder, call it what you will)

I expect I could make all manner of historical comparisons and cite a number of sources, all of which I will subsequently have to do when I am writing up my research anyway. But (if I am allowed to start a sentence that way) I shall fall back into the land of analogy and go back to a geographical fable.

Once upon a time there were two countrymen, explorers both. One went away across the mountains to live in a foreign country but the other stayed at home. However each of them discovered a stream, the one who lived in a foreign land found that the stream got stronger and even though it went through a number of rapids on the wayit became a mighty river which he gave a name to.

The other explorer's stream seemed to meander on through deep woods and almost petered out. The explorer who tried to follow this stream was almost forgotten until one day a third explorer, familiar with the big river named after the first thought that neglected stream had water in it of a very similar hue and consistency to that in the big river on the other side of the mountains. This new explorer thought that the second explorer had been neglected and so named this newly rediscovered stream after him.

As time went on and more and more explorers followed these two streams, as they became rivers, down towards the sea, the rivers seemed to merge as they overflowed into the flood plain at the far end of the mountain range which divided the two countries. They seemed to merge, and then seperate, and merge again sometimes leaving isolated ox bow lakes in the way that mature rivers are wont too. Indeed it became difficult to say whose river was contributing the most water flow. People argued as to which of the names given by the explorers the delta should be named after.

Then one day, one day, somebody decided that instead of settling the issue by following the streams down to the sea, where the river had become so wide it had lost all distinction as it merged with the tide, that they would try and follow each river to it's source.

At last they discovered why the waters were so similar. Because both streams had the same source at the watershed. One flowed an easy path down one side of the mountain into the country the first explorer had moved to whilst the other flowed down the other side through secluded woods until it emerged at the bottom of the mountains onto the plain shared by both countries alike.

It was the same water all along, and the explorers names? Kanner and Asperger.

Tuesday, November 03, 2009

I feel honoured

I have made a number of presentations before, at conferences both great and small but never as a "keynote speaker".

That is about to change, I have actually been invited to be a keynote speaker for a conference to be held in Manchester next year, entitled "Theorizing Normalcy and the Mundane", which is a disability studies conference.

This is some step up for me, and all the more inspiring to me because I do not have a single academic qualification in that field at all, just a history of submitting a number of challenging papers in a genre I actually feel very comfortable since for all it deals with "theory" all of that theory comes from a very pragmatic background of dealing with that stuff and dealing with people who deal with that stuff, and dealing with people who administer that stuff in social services, and education and employment.

As Bev has explained in a wonderful graphic way this theory is actually a very practical and real way of dealing with the effects of 'impairment' or 'difference' whatever you call it.

Those who like to deny that find themselves to be in reality part of the same machine that creates the mythos of 'disability' and in effect they are colluding with there own stigmatization.

I shall be tackling the rather unfortunate consequences of an inclusion that is an empty policy without accomodation, negating the notion that one can ever be indistinguishable from ones peers (as that is meaningless) and challenging Wolfensburger's concepts of 'normalisation' and social role valorisation. It's all real world stuff and about the everyday crap that is served up in schools all over the country, indeed over the world, and in the false notions of ABA which in effect are only an extreme of the general ethos of a 'hidden curriculum' of conformity in education.

Dealing with how position and attitude affects the language that is used to describe identical situations but how it puts a pejorative and stigmatising emphasis on the 'deviant' subculture.

My detractors are going to hate this of course, hate it even more because this is not even an autism conference, although autism does inform my perspective, the points have generality beyond that.

So blow as hard as you like, I was not chosen to speak because I have nothing of value to say, and neither because I lack any of the theoretical and practical background to put it into context.

Monday, November 02, 2009

Ready to go:

This is a repeat of my post to my other blog and also a reminder for those who signed up for my research a while back and have forgotten about it. You will be emailed soon, or if you have changed your email since then and don't recieve a copy by tommorrow morning, let me know and I will resubscribe you to the research mailing list.

By the end of the 2nd of November (GMT) the online video experiment will be live. Those who are signed up to the mailing list will recieve a message concerning the URL and mirror URL.

I will also be launching an appeal for new participants as well, who will need to fill in the initial questionaire which details I will also publish again tommorrow.

Following this there will be an appeal for NT online participants (as a control group)

There will also be a version of the AQ/EQ test online which participants will be encouraged (though not compelled) to complete. Completion of the test will not be taken to be an endorsement of approval of the ethics or methodology of the test.

Sunday, October 25, 2009

Five and Four make nine

Just as the 29th of October will be the tenth anniversary of my diagnosis, tomorrow (the 26th as I write this) will be my 54th Birthday, and I recall some problems during my 53rd, not the least I demonstrated how innumerate I am by adding 5 and 3 together to make 7 :(

Oh well this last couple of days has not been too brilliant either. Yesterday I managed to scrape the paintwork on a parked car as I tried to manoever my tank of a 4wD into a tight parking spot in a supermarket, I thought I was too close to the car on the other side and when leaving more room for that one, managed to catch the side of the other one with my politically incorrect bull bars.

Oh well I don't know what that is going to cost to put right, but I expect a phone call at any time to tell me how much I owe for a paint job. Just when I am desperately short of cash as it is.

At least I gave the car owner my proper address and phone number, but not everyone does this, as later in the evening, (I presume it was overnight) I seem to have fallen victim to another motorist who can't judge distances, as I got up this morning to discover my door mirror had been smashed against the side of my door. I am not even sure I can get a proper replacement for that, I shall have to fix an odd one, like I did on the other side, (that's two of them gone now) but I suppose if I do, they will at least match again. Though it is exceedingly annoying to have to drive out to the only sort of place that keeps suitable mirrors in, and then fix it on.

Apart from that my video experiment is very close to launch. For all of those who filled in the first questionnaire what must be more than a year ago, and have watched for any signs of life, it will soon be so, after my supervisor gives it the final approval.

Tuesday, October 20, 2009

Never the same water twice

October 29th 2009 marks the tenth anniversary of my diagnosis.

Much water under the proverbial bridge, and I question whether I am the same person I was in October 1999 (or any other time for that matter)

Well in one sense I am. I am a continuity since childhood of certain characteristics, physical and neurophenomenological that govern the way I react to the external world and the way it will react upon me. However in another sense because the world moves on and one cannot step into the same river twice I am not the same. The environment one lives in, the circumstances one finds oneself in, all go toward moulding the person as surely as the set of characteristics one has been dealt to begin with.

Not all of the times in those ten years have been good ones, and my blog is also full enough of bad times when I have felt really bowed down by circumstance.

To begin with ten years ago I was much shaped by those circumstances, still reacting to the death of my mother, and the personal misfortune of finding myself after a failed business venture on the job market, heavily disadvantaged by fortune and circumstance both.

At the time my diagnosis came as a relief, it got me off the hook so to speak for various things which I had been 'taught' by society and my peers were character flaws, which if only I tried hard enough I could work on.

However at that time I did not know much about Aspergers syndome and autism, and I was on the first rung of my ladder of understanding. Much that was available on the internet, in books and articles was pretty negative about the impairments and limitations of being on the autistic spectrum. I sometimes felt like they were not describing human beings at all, and it was depressing, not only to be like that, but to be thought of like that.

Fortunately I had the experience of the social model of disability to guide me, so I did not fall into the trap that so many other have fallen into, of simply identifying themselves with the medical model traits of autism and internalising that as something real.

I thought this is not the be all and the end all of autism, there is much that is not described, there is much that is unknown, and I will not be limited by the descriptions of what I can't and never should be able to do. More than just rebelling against that I had an inner desire to change it all, and I started with the NAS.

Now the NAS was not the same organisation of today, soon to be celebrating the passing of an autism bill. It was an organisation stricken by financial crisis and debt, and I expected that organisation, which still did not accept me as an equal to the parents who had formed it to do something for me to improve my position in society! Well 'no' that was never going to happen so I got involved. The rest is history.

I am a different person, as much as the NAS is a different NAS, and the field of study of Autism is different too, adults like myself have contributed to that, with our writings, our videos, our activism, as much as we have been research fodder for the scientists.

One thing I was never going to do though, was to become a self narrating zoo exhibit, to merely parrot the impairments and relate them to my 'sorry' state. I have to own that Jim Sinclair, was a big influence there. I wanted to change things, and if it meant going back to college and University in the process, to gain the knowlege and the qualifications to be taken seriously then I was going to do that, and did, never mind the financial cost and the struggles that took in social terms.

Would we be able to celebrate the passing of an autism bill, had I not taken the actions I did when I did? Who knows? I think if there were to be a bill without my having existed on the autism stage it would be very different, more swayed by the kind of garbage that comes from Autism Speaks, with the emphasis on 'defeating autism' and useless research that is leading in the opposite direction of anything that is of practical benefit to the here and now, never mind the future.

Perhaps I did make a difference, and for some terminator to go back and change history so I did not exist might mean it neverwould have happened, but then again I think I can safely say that for everyone else that had a hand in making these same changes it has been a team effort, not only those on the inside of the tent pissing out, but all of the sometimes raucous mob on the outside pissing in.

Perhaps now it is time for me to be on the outside pissing in again, as the air inside the tent gets foul after a while not to take a metaphor too far :)

Wednesday, October 14, 2009

The Lord is my Rock and Salvation

When life is shit, God is still good!!

Never mind Maggie Thatcher (who perverted the words of St Francis) and her bastard son David Cameron:

All Creatures Of Our God And King

All creatures of our God and King,
Lift up your voice and with us sing,
Alleluia! Alleluia!

Thou burning sun with golden beam,
Thou silver moon with softer gleam,
O praise Him! O praise Him!
Alleluia! Alleluia! Alleluia!

Thou rushing wind that art so strong,
Ye clouds that sail in heaven along,
O praise Him! Alleluia!
Thou rising morn, in praise rejoice,
Ye lights of evening, find a voice!
O praise Him! O praise Him!
Alleluia! Alleluia! Alleluia!

Thou flowing water, pure and clear,
Make music for thy Lord to hear,
Alleluia! Alleluia!
Thou fire so masterful and bright,
That givest man both warmth and light,
O praise Him! O praise Him!
Alleluia! Alleluia! Alleluia!

Let all things their Creator bless,
And worship Him in humbleness,
O praise Him! Alleluia!
Praise, praise the Father, praise the Son,
And praise the Spirit, Three in One!
O praise Him! O praise Him!
Alleluia! Alleluia! Alleluia!

Sunday, October 11, 2009

The Myth of Genius

It was this somewhat misguided qoute on leftbrain/rightbrain that got me thinking;

"The severe autistics are in fact geniuses. Autism will eventually be seen as symptomatic of genius and not retardation."

Tuesday, October 06, 2009

The NAS and Autism Speaks UK respond to "I am autism"

Firstly this is what the NAS have to say:

"The NAS is aware of a campaign video called "I Am Autism", produced by the US charity Autism Speaks.

While we understand the huge pressure many families are under, we cannot support a campaign that is so negative in its portrayal of autism. We strongly believe that people with autism make a unique and valuable contribution to society.

Autism is a serious and lifelong condition. For many families and individuals affected by autism, we know that life can be extremely difficult, especially when they are not getting appropriate support. However, the right help at the right time can make an enormous difference. It is crucial that this support is available for all who need it."
And this is what Hilary Gilfoy the Chief Exec of Autism Speaks UK has to say:
“Autism Speaks in the UK is a quite separate and independent entity from Autism Speaks in the United States and took no part in the preparation of I am Autism, which reflects a view of autism which is very different – and alien - to the feelings of the majority of people in the UK including ourselves. As an organisation therefore we do not share, endorse or advocate the views expressed in it. Indeed we expressed our dislike of the poem by Billy Mann directly to him when he was in London last May.

The best way for autistic advocates to help secure change in such attitudes is by putting their views directly to Autism Speaks in the United States – as we have done. We know that they are aware of the strength of feeling that the video has aroused and have responded to this. We think it would be a great pity if this one short film were used to widen divides within the autism community, when we all share a powerful and common interest in ensuring a better future for all those affected by autism. It is for this reason that we have not put any general statement about the video on our website because we have no wish to draw further attention to it.”
Now whilst you will appreciate that I do have a connection with the NAS and it would be unwise for me at the current moment to comment further on the official statement, I do not have any connection with Autism Speaks whatever, however I did ask Hilary Gilfoy to make a statement on behalf of Autism Speaks UK distancing themselves from the video and she has obliged.

Ever since the demonstration outside Downing Street, which I took part in, against the failure to invite any autistic people to the "party" inside, I have heard rumours of what went on inside, which I am sure Dinah Murray, who was able to be on the inside would be able to substantiate, and that is that the Poem went down like the proverbial lead baloon.

Whatever we think of Autism Speaks UK, or the NAS for that matter I just wish to illustrate that even our "enemy" over here has a great deal more respect than Autism Speaks in the USA, and their kind of campaigning just does not go down well with anyone over here, even their friends. I hope that the USA learn that message as well, and that "I am Autism" is the last video of that genre that will ever be made.

I have not been able to make a video response myself, there are enough excellent ones out there already so here is an old one, it even features my favourite "whipping boy" professor "double barrel" himself being positive about autism.

Sunday, September 27, 2009

First thoughts on the NHS' autism prevalence survey.

It might be assumed that I would welcome this study because it confirms what I would like to hear, what I might have long suspected, but no, this is not the case, I will not allow myself to fall into the same traps as those who argue the opposite to what I believe, of believing the first piece of 'evidence' that comes along uncritically.

No study can prove anything if it stands in isolation, nor can one presume just because a University is behind it, that it embodies the best traditions of objective investigation at all. There are simply too many contradictory studies out there, many of them the result of longstanding academic rivalrys between disciplines and indeed institutions, never mind rivalrys between schools of thought.

Having read this report now, I find myself to have been at least partially correct in my suspicions about the inherent bias with which this study was (inevitably) produced.

There is a strong subtext in it, a definate semiotic for those used to this sort of deconstruction, that the hidden message as it were, is the continuing presumption that those identified with ASD are inherently inferior to those who have carried out this examination. The preposterous arrogance of the academic and diagnostitian alike that pervades so much of the literature.

It is an old, old bias, not particularly aimed at autistic people either, because it is inherently classbound, and goes back to those presumptions about those who favour restrictive over elaborative linguistic codes.

Alas I am the latter and wonder even with this presumption of verbal IQ based upon a set of difficult to spell words from a particularly non anglo saxon etymology, whether the likes of Brugha and Baron-Cohen can recognise gallinovularity when they see it. - With a liberal does of the same academic arrogance myself in assuming on my part that they even know to whom and of what I am refering to here.

That is the point entirely!

That the study seems to assume, and I guess this goes back to Rutter and many others who have accepted guesswork into the literature without ever examining the accuracy of what to them is 'self evident' for instance a high correlation between low IQ and ASD, then effectively through implication drawing conclusions from the relative scarcity (on such a ridiculously small sample of 19) of autistics who have achieved a level of higher education.

There is much nonsence here if one attempts to 'correlate' the verbal output of these doyens of academic prolixity on the subject of ASD. to what can be seen outwith the academic discipline they are rooted in.

Simon Baron Cohen for instance seems to rail on forever about some hidden cohort of Cambridge Mathematicians, but has never pointed out that there is some evidence that autistic people are underrepresented at University. This is not a new fact as it has long been apparant from examinging UCAS and DSA statistics.

At this point I stumble into the inevitable pit of anectdotal evidence to suggest why.

Not because we are not capable at all, but because the system is inherently discriminating. Indeed the Educational system as a whole is, as can be seen from the number of exclusions in school, the poor academic record of special schools, and above all as I know from some familiarity with HE and Autistic students, the difficulties that are caused by the failure to adequatly accomodate.

Yes this is the Social Model of disability, and this particular study cannot be understood without looking at such an alternative way of constructing the phenomena which it claims to be measuring.

It is all medically based, the experts come with a bias of medical practice and epistemology, not only that they place reliance on the shifting sands of so called gold standard diagnostic and screening methods. Diagnosing what I ask? The shifting sands of autistic definition.

Autism is not what you think and is never what you think, not a constant at all but being subtly redifined by custom and practice as well as revision all the time.

There are huge flaws in this survey before one even begins to look at the sampling method, no conclusions whatever can be safely drawn from it, because it falls foul of that most fundemental of truisms "whichever way you look at it, it's still autism".

I suggest a compulsory course in disability studies would be a good start for Prof. Brugha and his team. Then come back with a methodology......

(note at the time of writing my personal website, and hence any links that refer to it, is temporarily down due to maintenance)

Sunday, August 30, 2009


I arrived on Monday after taking a long drive, going via lake Vyrnwy pretty much my Christmas route and I had a little paddle in the lake for old times sake.

Anyway I got to the site about six pm and struggled to put up the tent. Thing is it is so long since I did it I had forgotten how and I got a bunch of guys in on the act. Eventually I got it sorted enough to withstand a gale the following morning.

So after getting the tent set up it was quite comfy apart from the rain in the night and the wind flapping everything. Well it is cosier than the small tent I had last year and this site is completely different as radios are banned. Last year's site had all sorts but this is strictly for outdoors people. In the evening I went down to Beddgelert to get some beer in, find the shops have some fish and chips. (Kebabs are not local to Wales methinks) and at the closing of the day I was sitting in front of a camp fire enjoying a beer with the mist rolling off the mountains could it get better?

On Tuesday I went into Llanberis, not a bad day, I had a decent breakfast there but decided the mountain railway was too expensive. I have spent enough as it is but it is a long time since I have taken a longer break like this. So later on I did a little mountain scrambling around the milestone buttress of Tryfan. Got quite high, not been anywhere up there since mum was alive. I went up in a vest, running shorts and sandals not exactly mountaineering gear. I was terribly out of breath of course and struggling but I did have a rucksack on my back in case the weather turned nasty with food and warm clothes. Mind you, I passed another couple and they thought they were overdressed.

For the campsite however I needed my wellies . This is the downside of the site as it was very wet and muddy and the rain made things worse. Not that I was bothered about the mud, I can be as dirty as I like here, and can wash everything when I get home.

I also went for a walk that turned out to be more difficult than I thought at Aberglaslyn. I thought it would be a pleasant riverside walk, but turned out to be a bit more than that. Since I had only paid to park for an hour I just walked out half an hour and back.

In the evening I just wandered by the lake at the campsite a bit, and then settled down to beers and my camp fire .

The next day the weather was terrible, completely different, rain in the night and a howling gale, no way I was going up Snowdon in that so I took a long drive instead, ended up at the Sychnant pass in Dwygyfylchi, where I stayed when I was about 7 years old. I climbed a small “mountain” Allt Wen because it was there, nearly got blown off and again terrible out of breath doing it, but in stages stopping regularly I actually got to the top. Seems I was there when I was seven as I have photos. Quite pleased I did it, but got rather wet and was difficult to take pictures in the constant drizzle covering my lens in spray whenever I tried.

So later on I though of going to the beach but it was too cold wet and windy. I drove down the tiniest and most difficult track I have done so far to a remote lake and campsite at Cym Bychan (near Harlech) which I suppose I could stay at one day but maybe it is too remote. Definitely having a 4WD is handy on roads like that even though I met a hairpin bend so steep and tight I could not take it in one turn even though I met a lorry coming the other way! Well at the top they seemed to be widening the road so perhaps this is the last time to experience that track as it is. Every year the roads get straightened and widened a bit more, but there are still some very challenging drives.

My final day turned out to be a bit of a disaster in some ways. The morning started off OK with thr promise of better weather and I went down into Llanberris for breakfast again and bought myself a waterproof jacket from an outdoor shop which had a sale because I was very unhappy with the performance of my existing waterproof the day before as hydrostatic head of 8000mm or not it let water in the sleeves!

Anyway for the day I intended to take the long way round to Snowdon and rather than starting from Pen y Pass but I thought I would walk the back way from Llyn Gwynant to start with to see how it went and then if it was ok and I was not done in I would try Snowdon itself. Well it started out ok, I was dressed properly for it this time, long trousers, walking boots, gaiters and my new waterproof as well as other stuff in the rucksack.

The First mile was ok, although it took me longer than my usual walks because of the climbing. However after that it very nearly turned into a disaster as I lost the track, at some point I was supposed to turn left after I crossed a stream, but the trouble was which stream as I seemed to have crossed several? It all went pear shaped and I regretted the so called sensible option of walking boots as I had to ford a stream and before long it was over the top of my boots, so I had waterlogged boots and there nothing worse than waterlogged waterproof boots cos if the water gets in it stays in. ( I have had to dry them out with a hair dryer since getting home)

Worse was to come as the path was very indistinct. You might have heard stories about people falling into bogs and being sucked down and I never believed it till now thinking it was a literary exaggeration but I took a wrong step and my right leg sank up to my knee and I was literally sucked down and got stuck. There was no solid ground and for a moment it seemed like I could not get my leg out, and I was fearful of what might have happened it I had not been able to pull myself out.

Well wrong route or not, I was never out of sight of the road, but being as I had lost the track had to guess the best way. Trouble was all the ground was similar and so you can imagine I took great care to test it before making every step from then on. Ultimately the main road curves round the area where I was walking and the way out was to climb out of the valley, but it did not get less boggy, and just got steeper and steeper. I was out of breath and just making a few steps at a time before resting, it took me over an hour to cover that part and it was not more than a mile. The worst was that at the top mostly there was a high stone wall keeping the road in and a fence on top of that, I could only see one point where the wall looked lower, and I still had to climb up the wall and over.

In the end I was a good way off where I should have been so had to walk round the road to get to Pen y pass. Well worse to come, I was hot of course and sweating, I had long ago taken off my coat and packed it in my rucksack before I even fell into the bog. However the bite valve from my camel back hydration pack (yes my rucksack is very hi tec) came off and I lost it somewhere on the road, in order to stop leaking water, I had to tie a knot in the tube. That was the last straw, when I got to Pen y pass there was a bus in, and I just caught it straight down to Llanberis, on the bus I changed out of my wet boots and socks, and put my sandals back on. (good job I had packed them just in case) I thought maybe I could get the train up to Snowdon instead because I was not going to walk it in my sandals, or with a leaking hydration pack. So I eventually found a shop to replace the bite valve, (from a platypus not a camelback, but who cares) it cost me 6 GBP which I thought was over the top.

Then to my annoyance I discovered that the train was fully booked all day, and so that was out, so I thought maybe I would go along the lake railway instead for something to do. That too was fully booked so I felt really pissed off. So I managed to repack my rucksack with the wet boots at the bottom and everything else on top and I waited for ages for a bus back to Pen y Pass.

When I got there I figured I did not have time to go up Snowdon before the last bus back to the campsite so I figured I would walk as far as I could get in about half an hour chosing what turned out to be the most arduous track up and wearing my sandals after all. As it turns out my sandals were perfectly suitable, there is a lot of bull talked about wearing the proper walking boots, much good they had done me already I don’t think. Thing is it was a hard climb as you can see from the photos, but was worth it for what I could see even if I only got no more than about two miles up the track but I reckon I could have done it in an hour and a half to two hours if I had not wasted all that time earlier.

So I decided discretion was the better part of valour and walked down to the café as I was really dying for a cup of tea and something hot to eat as it was getting later. What then pissed me off was the time of the next bus, an hour and three quarters away, I figured I could have climbed further if I had known that.

Then the weather broke and it started raining again. However I decided that I was not going to catch the bus and figured I could walk the long way back to the campsite in about an hour. Well it took me an hour and a quarter and I got absolutely soaked, no waterproof is up to the sort of rain that Wales can deliver, blowing at you with the force of a gale. However coming back the long way it was possible to see from above just where I had gone wrong on the way up. It’s funny that you can make out the tracks from way above when you can’t on the ground.

(A note from my return home, apparently the reason I could not find the bite valve for my hydration bladder, was because it had miraculously fallen into my trouser pocket, I found it there when I was unpacking)

Well of course none of that will seem much to most readers but do not forget, to heck with the autism, I am 53 and arthritic.

There are pictures here.

As for you cynics and naysayers, it is my life and I will do with it what I will!

Sunday, July 19, 2009

Down time

In another months time, I am going to disappear over the edge of the internet for a couple of weeks, where I will mercifully be out of contact from this mad mad world.

That is because I shall be camping, and either not have electricity to spare to charge a laptop or be out of even the reach of cell phones (what bliss)

Have to say I feel that I am coming to a certain juncture in my life, another of those forks in the road.

I have no certainty that I shall be elected again onto the NAS council, and if I am not, then it will be an opportunity for me to change my relationship with that organisation, maybe even to get something out of it for myself (I cannot be employed by them whilst I am a trustee)

I also expect to change my relationship with Autscape, which will be occupying my first week under canvas, in that once this year is over I shall revert to being an ordinary member as being something other than the peoples choice of chair has certainly taken it out of me, for diplomat I never claimed to be.

I shall also be glad to be away from the controversies of this hub, which I am also a somewhat reluctant member of.

It has turned nasty beyond all measure, there are predatory vultures out there and no more dare I say.

Anyone who thinks I have ever been anything but an iconoclast should look at my poetry, I don't run with any herd, in either direction and my opinions are definately my own.

If I wanted to play it straight I would be an autism consultant by now, brown nosing my way into the profession by whatever means I could, but fate or personality or whatever, I just don't have the capacity for that!

There is not even anything interesting or new on my Youtube channel at the moment either, just a bunch of old geezers bashing sticks together to the sound of a squeeze box and even that was months ago. (and it was an incredible 29 years ago since I was up for that lark myself)

Nah you read into it all what you like, I am not sure you really have the choice, but whatever, I need some down time, elsewise I am not long for this world.

Tuesday, May 12, 2009

The First to go

What else can I say but Never Again!

Sunday, April 26, 2009

Another one bites the dust

We autists don't like change (at least this one does not)

The announcement of end of my blogging presence here was perhaps a little premature because it still has it's uses.

Yesterday I learnt from the BBC (not Yahoo incidentally) that Geocities is being buried.
This follows on the end of Lycos Europe which recently caused me to lament the ephemeral nature of the web.

Geocities might not be keeping up with Myspace and Facebook and the rest but it was where a lot of us cut our teeth. I would not have learned HTML without that impetus, and I guess this and the other free hosts out there provided us the first opportunities to get our message out to world and start connecting, via web rings (remember them) and cross linking.

Those who do not keep up with the times, who don't recularly update websites and move across platforms will be lost as when the plug is pulled a vast number of links will become dead including the most popular of mine.

Nowadays, however I do not rely upon free webhosting and pay for the space to host my old style website, which is all still there. Nothing is recession proof of course and eventually I may not be able to afford to maintain it, but at least I will be the one who kills it off, not someone else.

Most of the old Geocities sites may have been badly designed and essentially so much rubbish, but you can say the same for Myspace.

I guess nothing is permanent in the web world. Woolworths stood for nearly a hundred years. How much of the web as we know it today will still be here in 10 years time, even the lead applications of today such as Facebook, Twitter, Youtube and what have you, they rise up like flowers and are cut down. In ten years time blogging might be as much yesterdays application as geocities was. Enjoy it while you can.

Monday, April 13, 2009

Pastures new, or any port in a storm.

I have found a new blogging haven, and no I am not going to link to it from here, as I find it a haven of sanity and sound rational discourse in the face of what have increasingly become Punch and Judy knockabout exchanges on the autism hub.

Yes my new blog does deal with autism, it does deal with science and that by implication would be enough to infuriate the ‘mercurian’ persuasion, whose interpretation of science is somewhat different to my own.

In that new community I find the level of discourse to be far more respectful in general than I find here and it is a welcome escape from the ad hominem attacks and blatant irrationalism which all too often surfaces in the commentaries on our blogs.

I have to say, indeed confess that my own style of commentary both within this community and without has often sunk to that same pantomime level, which is what tends to happen when the quality of what one is responding to almost demands a less than serious rejoinder.

Is it good bye to this particular blog?

Well it may be, then again it may not, as I reserve this blog for the more personal.
Anyway I could go on to say that I have found the exchanges on the autism hub to be more analogous to the late night arguments one might have in a pub after a few beers when ones guard is down compared to the sort of constrained exchanges one might find in a debating society.

So what have I learnt from other bloggers both within and without of the autism hub?

I have learnt that Michelle Dawson considers me the enemy of science because I dare to be critical of the basis for the research her institution is undertaking. That I fear stems from a clash of epistemologies more than anything else as it often seems we are speaking mutually unintelligible languages, mine being inflected (some would say infected) by the dangerous virus of sociology. No matter, I respect Michelle's work both in advocacy (whether she acknowledges the word or not), and in her contribution to demolishing the myths of behaviourism.

Harold Doherty, would seem to think that I am one of the Devil’s minions, a cohort of High Functioning Hells Angels who would ride roughshod over his rights as a parent. What utter nonsence, put away the distorting spectacles Harold. His ally Autism’s Gadfly seems to be confused, on the one hand I am a nobody, a wannabe sniping at the authority figures in the autism world. On the other hand he snipes at me because my relative academic success (albeit thirty years late) is somehow challenging to his self esteem as someone doomed by the curse of autism. You can’t have it both ways.

Others think that because I call myself a king in my own domain, that I am closer to Caligula than Marcus Aurelius. So be it, I sometimes wish I had never used that particular trope as the subtleties of the shift in meaning between Erasmus’ and Wells' use of it go unnoticed. The reality for this one eyed tyrant king is that at this age (to quote from Thomas Hardy) toothlessness is felt less to be a defect than hard gums an acquisition.

As for Foresam, I leave the Be(a)st till last does he even think? Or has he been swigging the mercury himself?

I have really had rather enough of it all which is why I am moving to pastures new, hoping that I can cross the bridge without encountering any Troll resistance, or worse yet to find them chasing after me.


Thursday, April 09, 2009

Our ephemeral history

Today I have been occupied in revising the bibliographies in a number of papers I have written, with a view to publication, and have discovered on clicking through a number of the internet links that they no longer exist.

Since ours is a predominantly on line cultural history, that much of our archaeology has been effectively wiped out and is inaccessible now.

Of course key texts like the Institute for the Neurotypical, and Jim Sinclairs writings are still there, but I am no longer able to find Martijn Dekkers paper, which I often cite. (click on his link and see for yourself what I mean)

This is the problem with the internet, in that you can still find out of print books in libraries, but if you try and follow any internet links given in them, likely as not they are no longer there.

I have myself been a victim of this, in that I have recently lost two domain names with the demise of Lycos Europe who hosted them, and that is just a microcosm.

I recall nearly ten years ago now, reading the web sites of Amanda Baggs, Jared Blackburn, Dave Spicer, Frank Klein and others, but where are they now?

Ok I know where Amanda is, but I am referring to the original Aleis in Wonderland site, and there are many more examples.

I myself have tried to keep popular stuff which is frequently referenced stable, in that I have not moved those pages around on my original Geocities site, but anything that was on Lycos has now gone.

Wikipedia is no better. Whilst this is useful it has it's limits. There is so much that is subject to the inumerable "wiki wars" and so much which is little more than plagiarism from out of copyright encyclopedias which by definition is going to be more of historical interest than anything else.

The early history of Neurodiversity and the usage of the word has been effectively wiped out by wiki wars, the current article in wikipedia being inaccurate, uninformative and biased.

It is more than annoyance, because it really hampers the work of someone like me, who cites from the internet a lot.

This is one reason I am now submitting papers to journals, because otherwise in another ten years time, none of it will necessarily still be able to be read. This blog being an example, at some point google could change their terms of reference, and it could be gone in the proverbial puff of smoke ........

Of course the shifting landscape of the internet is not only our concern, it can be very embarrasing too: Home Office in new pornography embarrassment

Wednesday, April 08, 2009

Under the liquid cosh

I heard this article this morning, and thought that if nobody else blogs about it I shall.

"Hundreds of women sedated in care homes may be at risk of having children with birth defects, the BBC learns."

Now the article goes on to relate research which indicates that "10 ex-residents of a children's home run by the Church of England in Gravesend, Kent, have had children with a birth defect."

Now I am not playing the blame game and pointing the finger at the Church of England, because you can bet that what went on there was widespread across the care industry and that would include any number of charities including one I am associated with.

We can rail against the practices of the Judge Rotenburg centre but this is worse when you consider the outcomes, because it is interfering with the reproductive ability of a generation as surely as if they were sterilised and this is not even autism yet.

I am coming to that, because if the major tranquiliser regime that these young girls were under, in order to control behaviour was that dangerous, just consider the chemical cocktails that some autistic children have to endure, multiple psychotropic medications, often off licence, and that is mainstream before we even come to what the biomedical quacks practice.

Isn't it ironic that in order to "cure" or control one generation they will risk the next?

Is this a real danger to future autistic mothers?

You bet I can think of several people in my own acquaintance who have been on long term neuroleptic medication.

But anyway, whether it is autistic young people in care, or NT's this is a major abuse.

Friday, April 03, 2009

Good science is not good science if it is unethical.

I do not any longer think there is that much of a distinction between good science and bad science.

For sure “crank” science is as much the bane of this generation as it has ever been, in terms of giving unsupportable validity to distasteful concepts, however following on my recent blog about the distortions of science in Nazi Germany I really think that what is equally important to good science, is not it’s accuracy but the spirit in which it is carried out.

Where most autism science fails is at the outset, before even the construction of the experimental paradigm, is in the attitude, because before everything comes the formulation of the hypothesis, that imaginative leap from what is currently known or unknown, toward the question one believes one can answer through the scientific method.

Nobody comes to this without bias. My particular bias, which you could argue gets in the way of objectivity, is my inability to read the serried ranks of journals, without an increasing sense of anger, with regard to the contempt that most of this shows to the humanity of my people.

I cannot but see the FMRI scanner in the same intrusive light as the discredited anthropometrists calliper.

So much of the paper chase is driven not by a desire to know anything useful, but by the pressure to publish, and to publish something new and original, even to the neglect of examining the wider context and grounding for that.

It would be disengenous (Godwins law again) to compare most scientists currently climbing the academic ladder with the racist tainted science of pre WWW2 Germany, however I cannot help wondering, if the metaphorical gloves were taken off, what they might do. The prospects for human veniality are bleak, as the experiments of Zimbardo and Milgram (in themselves dubiously ethical) have shown.

It seems to me, in journal after journal all we see is a number of cliques arguing between themselves, that “I think this and my scans prove it,” never mind someone elses set of scans show something else and “prove” something else.

In terms of good science vs bad science this may well be because of poor experimental design, and bias being multiplied through the analytical tools chosen, just as something that is not there can come out of a photoshopped picture simply through chosing one particular filter algorithm over another.

(Does anyone remember the famous Nessie pictures, where reputable experts in there own fields Edgerton, strobe photography, Rines , Sonar produced evidence that Nessie existed, only to be debunked some years later when one of the pictures turned out to be largely an artefact of the enhancement of a rotting tree stump )

One should beware of simply taking anything for granted just because it has a University seal behind it and has passed peer review, because one needs context, context is everything.

The context with autism, is that everything so far has proceeded from it’s cultural construct. The scientists all come in with a bias, that autism exists, and it is this, that or the other. Nobody has ever reframed any of the questions ab initio.

So is my bias against their ethics any worse than there bias against the dignity of the “subjects” they research and there refusal to countenance that they may be mistaken, especially given the mutually insupportable and contradictory nature of so many of their findings.