My Weekend

Here I sit in a University owned hotel lobby having just checked out, reviewing my life I suppose, whilst waiting for the coach to take me back to the remainder of the residential weekend.

You only have to turn the news on to see signs of the four horsemen of the apocalypse and uncertainly over everything in the future.

The future is always uncertain for me, because never mind world events, where do I go from here, and how do I fit in?

There seem to be altogether too many people on the planet for there to be a stable life, global warming, energy crises, food and water in short supply, it seems like the chickens of Malthus, whose prophesies were long set aside, are finally coming home to roost, and so is there room for one more person on the planet, me?

My parents have respectfully “shuffled off” there “mortal coils” and what is their legacy? Apart from myself and my brother, do they still live in anyone else’s memory?

Not everyone can leave a concrete mark even on their own generation other than the headstone that marks there grave.

I know my mum left concrete marks in the most literal sence, in the form of ramps to buildings. I know these would have come eventually since the law now demands them, but without the pioneering efforts and the campaigning would that be law now? I do not think so.

So whilst my mum was alive I was as active in those campaigns as she was, as active as I am now in the autistic world.

My dad? I don’t know, I suppose had he and my mum not separated, my mum would not have made those changes in her life that led to that campaigning, and by implication would not have drawn me in.

I suppose too he played some part in the community during his lifetime. He worked, contributing to the economy, making the tools that supported the industrial life of Coventry’s motor city in the 60’s and 70’s. I suppose too he was a part of the war effort, as a boy messenger for the fire service during the Coventry blitz, and later on as a soldier, posted out to Egypt and Palestine. In a minor way, however you see occupying forces, and from whatever side you look at it, he was a part of that still unsettled history that is the middle east today.

He served in Palestine facing not dissimilar hazards to the armies in Iraq and Afghanistan. He had no choice, that is where he was sent, and in the process he learned a respect for the Bedouin and their language.

Back in civilian life he was part of the popular cultural movements of his generation, as a jazz musician, and later part of the folk revival, which as you can see from an earlier blog I became part of too.

Like all of us, he did bad and regrettable things in his life, I can’t say I have not done any myself, but in subtle ways a world in which he had never been, would not have been quite the same.

I know I face upheavals to come in my life. I have the prospect of kitchen and bathroom works in my flat, the disruption of which I am not looking forward to, they are the necessary improvements which should make things better for a while, before the next upheaval when I have to leave my current flat altogether as it is still scheduled for demolition around the time I will expect to be graduating as a PhD

It is like that envisaged course completion, some way off, and in a way so far off I find it hard to believe whether or not it will ever happen to me, or if something else might happen in between to cause me to leave my flat or my course of study earlier.

So why am I writing all this now.

I suppose it is reflecting on the fact that I am here at Birmingham, a year on from when I was at Birmingham last year, on a similar study weekend, planning my final assignment, and unsure where that was leading. I did not feel well a year ago, the stresses had really got to me, but I survived and moved on. For those of you who have followed my blog, it is all there to see as it happened.

So this time I am not a part of the course, I was studying. I am enjoying the temporary status of a paid lecturer instead, and nervous as to how my delivery yesterday was received. Being as I was paid for it, could I have planned it a bit better? Given it more attention? If I have another opportunity at a further study weekend I can certainly use the experience to improve on it.

In any case I thought I need to improve my ability to be more impromptu in my delivery, to be confident enough that I do not need to read from my prepared script.

If you see me in my “Whichever way” video, you will see me delivering a script, literally. I am reading off it. So I was when I first made the presentation that I later had filmed to make the video. Well I am trying to lead my life a little bit off the script now.

Perhaps there is a hidden script behind my life, and the future is already written, but I guess, nervous as I am even for the events of this afternoon, when I hope to find my flat as I left it, and not burgled, waiting as I am for the results of a brain scan I had last week, I hope that there is no melodrama waiting me. For now this actor is better off not knowing, else I could never cope with the present.

What will the world wreak tomorrow?
Tonight I have no care, and only am.
One now, one never moving instant instinct.
Continue time to turn, throw over what I feel
Return the terror, trample my delight.
For burns in my mind, memory of the light.
Outside, the blackness, shadows of the night.
Inside my soul, shines celebration of the light.

Watch this space, same time same channel ……………….

I am Kathleen but wer macht den schun?

I have been debating how to respond to this nonsense, or whether to respond to it at all. At first I thought it beneath contempt and beneath my dignity to respond, however having seen the strength of feeling on this it would be cowardly of me not to.

For a start off, being named in this subpoena (which has no validity whatever in the UK, where I reside and blog and have my being) actually puts Mr Shoemaker in jeopardy as the law stands in the UK, in that he has published a libellous statement suggesting my web site and blog's complicity in a ridiculous conspiracy for which he owes me an apology. I don't think the fact that he is an attorney in the US gives him any immunity outside of his jurisdiction for that. I want that apology Mr Shoemaker, I want it in public. Do you have a sense of decency Mr Shoemaker? Then use it!

I would suggest to Mr Shoemaker if he is reading this (which I doubt given the factual errors in the subpoena) to look through my blogs and my website so that he will have no need to subpoena the "evidence" It is there in cyberspace in the full public gaze, and he will see what little I have to contribute to what I consider and have always considered to be a side show to the basic issues of Autistic and Disability rights which I am concerned with. Beware too it is covered by copyright and even the reproduction of such in a court document invites penalties. (There is case law on that somewhere in the asinine chronicles of the law as I recall)

Indeed it is a matter of record that I fell out with the Autism hub over the predominance of what I saw as a pre-occupation with the mercury Issue that to me is totally irrelevant to what I am about so far as promoting the much misunderstood and maligned concept of neurodiversity.

As for any financial support I am giving to neurodiversity.com, that is a leg to pull is it not? Never mind pulling your own, you won't have any left to stand upon.

It is a matter of fact that some years ago I attempted to snaffle unto myself the domain name Neurodiversity.Com and was somewhat miffed to discover it being sat upon, by I knew not whom, long before I discovered the identity of the Seidel's

Mr Shoemaker, if you would like me to appear in person in your proceedings, you would need to pay for that, and even then I cannot guarantee that the laws of your country would allow me a visa to travel so your attempts are really nugatory aren't they?

This whole thing reminds me of the classic tale of Canute commanding the waves.

If you look sensibly at this subpoena, you will realise that it is a pathetic attempt to command the impossible.

Nobody, and I mean nobody keeps records of the type that have been requested, and the demons that are being invoked here are invisible. Arthur Miller anybody???

In my jurisdiction I have little doubt that Mr Shoemaker would be regarded as a vexatious litigant, and more than that would fall foul of the standards of the law society and have to answer, just as Dr Wakefield is having to answer to his professional body, where the best advice in law will not protect him from the truth.

We may have stricter libel laws in the UK, and they do cut both ways for sure but hear this ... criminal Robert Maxwell used them for years to suppress adverse comment, but when he died the truth came out, that he was a swindler, and a cheat who abused the law.

Elton John may have used them to extract damages for the accusation that he was gay, but the truth is he is gay and has admitted it.

Worse than that Geoffrey Archer has gone to gaol for perjury over his libel suit.

There are consequences Mr Shoemaker, and if you do not face them in this world, you surely will in the next. Is it worth your immortal soul Mr Shoemaker? Is it?

A retraction is so simple Mr Shoemaker, can we have it? I hope I do not have to extract it through the courts in this land or yours.

Your argument is not my argument and never has been. You have gained precisely nothing in your endeavours and I am sure if Kathleen were to appear, the information that she would give would be to the detriment of your case not in it's favour.

A Christian blog for the season.

Well why not, it is Easter after all.

However if I were to start a Christian blog there are many who would find it as offensive as the curebies find my stance on Autism.

One always has to chose a line to stand on, as Luther did.

By denomination I am a Baptist, and that no doubt already sends shivers down the spine of liberal Episcopalians and new age Universalists, but it also puts me beyond the pale of the equally 'heretic' established Churches, who are getting ready to submit me to the blogosphere's equivalent of 'auto da fe' no doubt. (see below)

That is the problem when you believe there is only one way, you tend to be exclusive.

Jesus of course was not exclusive, except in the sense that he asked people to follow him and not some pharasaical sect. (and who can say for sure which our denominations are the new pharisees)

In following Jesus that puts me at odds with many folk including some of the original Apostles, who let's face it were not beyond criticism, and Paul was the biggest self confessed sinner of them all.

Why do I believe in my particular brand of Christianity?

• That is because I was convinced by Bible study that the way to demonstrate ones faith is through the testimony of adult baptism, as Jesus himself underwent.

Why I do I believe Jesus is the Christ and my saviour?

That is for two reasons:

• Firstly the word, the message, logos, call it what you will. The message of love, and peace and forgiveness, a forgiveness that is a free gift we have not earned, for which Jesus paid the price.
  

• Secondly because of the indwelling Holy Spirit, and I am not going to get into arguments of Filioque, let the Greek and Roman Churches sort that one out for themselves.
  

What did Jesus mean when he said, whoever has seen me has seen the Father (John 14 )?

• If you look at me or my brother and listen to the way we speak, you have in a way seen oury genetic father, for we both bear his mannerisms either inherited or learnt. If you follow Jesus you have seen the heavenly father for I do believe that the message he delivered in his stay on earth was so powerful, so universal, so appropriate for all time that it can only have come from our Heavenly Father the maker of everything we are and exist amongst.

So was there room for Dinosaurs on the Ark?

• Don't ask me that one, I wasn't around at the time, you might just as well worry about trees falling silently in the forests of Berkeley (I like the notion of there being forests in Berkeley even if it may not be literally true, Californians please advise)

How do I square the idea of an immortal soul with my scientific belief in embodied cognition?

• H'mm I suppose I shall have to incline toward bodily resurrection and conjuring tricks with bones then :)

Is it equally contradictory to hold post modernist ideas and then hold to Biblical truth?

• Well actually it is post modernism that allows me to privilege the religious gaze over the scientific one if that works for me.

What I am anyway, is not yet decided, until I have been everything that I can be. My soul has to be the sum of everything which applies - not an equation in which only three dimensions apply.

I am not sure whether I shall allow comments on this blog, being as religion and faith are such personal things for this much is certainty. In the opinions of some I will be a hell bound infidel, and to others a delusional crazy, whose migraine auras have got the better of him.

It's something I can't force on anybody, you make your choice as I make mine, the same choice Adam had with the apple, take it or leave it.

Here endeth the sermon, you can see why they don't have me preaching in the pulpit at my home Church now can't you :)

and now for something completely different ...

The NAS is recruiting

I make no apologies for cutting and pasting this ad from the NAS site wholesale. I have only edited the style of one paragraph in order that it will stand out more clearly. If you read the para I have highlighted, you will see what makes the NAS so different from ASA, Autism speaks or the Autism society of Canada.

This is a job with great opportunities for one of us to do something about autism, where it matters, so here goes .....

Policy and Parliamentary Officer (Equality and financial security)

• Salary: £26,289 - £30,730
• Based in London

The National Autistic Society is the UKs leading charity for people affected by autism. Our ambition is to end the isolation of over two million people in the UK whose lives are touched by autism.

Working as part of a growing and dynamic team, you will lead on influencing government policy and legislation in the fields of employment, benefits, human rights and justice to promote the interests of people living with autism.

For an information pack please contact the Recruitment Team on 020 7903 3572 or email recruitment@nas.org.uk stating in which format you would like to receive your pack electronically or via post. Alternatively, download a job description and application form below.

Applications are sought from all suitably qualified sections of the community but particularly welcome from those with a diagnosis of autism or Asperger syndrome.

Closing date for applications: Tuesday, 18 March 2008
Interview date: Thursday, 3 April 2008

Committed to Equal Opportunities & Investors in People.
Registered Charity No. 269425.

The legacy of War

This afternoon on returning from Birmingham to Coventry I found our entire City Centre cordoned off by the police, traffic diverted and rumours of bombs.

Now this is not a unique experience, it has happened before but on getting home I discovered the bomb had nothing to do with Osama Bin Laden at all but Adolf Hitler.

It is such a strange coincidence that I must report it, because tonight the Belgrade Theatre in Coventry (yes it is named after that Belgrade) was premiering a play about the Coventry Blitz

The premiere was cancelled because not 100 yards away in a building site associated with the Theatre redevelopment, a 1000 pound World War Two bomb turned up, and that is enough explosive to warrant cordoning off a considerable area.

It's hard to think of my parents surviving these things being dropped regularly on the City, my dad was rendered homeless by one of them.

The relics of war last a long time, and I doubt if this is the last bomb that will turn up. We need to consider the amount of ordinance that is still being expended around the world and realise just how long into the future that legacy is going to last.

End of an Era

I took my landie to have the chassis inspected today, and as I suspected, the cost of comprehensively repairing it in order to meet the annual vehicle test would be uneconomic for me and it would be cheaper for me to replace the landie altogether.

Well whether I can even afford to replace it at the moment, is a moot point too, I think the money would be better invested in my studies right now. So it seems I shall have to part with the landie, and hope I can find someone who will be able to make use of the parts.

Once I started back at Uni, I suppose this was inevitable, that the conflict of expenses would come and I need to be realistic.

I had to get rid of my previous car for similar reasons in order to pay the fees for the first autism course I took at Birmingham Uni.

So here is some footage, it's all nostalgia now - gone avec les neiges d'antan :(

Words and enthusiasms

Sometimes it can be a real effort to write a paper, like the one I am still preparing that was originally intended for IMFAR (though it has since been rejected)

That is a real doozy of a paper which has to be meticulously referenced and well argued in scientific and sociological terms.

It is unfortunate I will not get to present it after all, but I guess it does not present in itself any new research on autism (which is what IMFAR wants) and so does not make the grade.

I do think though that it is saying important things that every autism scientist and social researcher should be listening to, but even if do I ever get round to submitting it to a journal instead, it has no greater likelihood of reaching it's intended audience.

I still live in hope of being able to presentit at the Disability Studies Association's conference instead, but it's not been accepted there either yet.

It's not a paper I am writing for the love of it, but out of necessity to get an important point across somehow, and it is tough work.

On the other hand, kudos to me, I am also working on another paper, for which I am being paid at the official lecturer rates for Birmingham University.

So far, because I am talking on a subject close to my heart, autistic politics and culture, it is almost writing itself, and the difficulty will be there to keep it within the timespan and subject limits of what I have been asked for.

Trouble is that being paid for it, raises all manner of questions, and I have had to go to the benefits people to ask permission to do this as therapeutic work.

It is therapeutic all right in that nothing lifts my self esteem so much as being paid for doing something like this. Everything else I have ever presented, I have ended up paying for one way or another, with accommodation, conference fees and all.

Being paid for once is a good start and a foot in the door at least.

But do I exist?

The Autist looked into the myriad fragments
Of the shattered mirror to find himself
He did not see any autism
For he was not there.

Discusss .....

A diversion into my past

Believe it or not I used to be part of Earlsdon Morris (Shown here in Utrecht) playing in the band until I committed some social faux pas I cannot recall. That is of course the everyday hazard of being aspie and undiagnosed (this was back in the 1980's) never mind that I was probably drunk at the time considering that Morris men are not renowned for staying sober when the opportunity presents.

For whom does Autism Speak?

I have kept rather quiet about this until I was sure the domain name was active, but I now own the domain name autismspeaks.eu and I intend to hang on to it.

I assert my moral rights to the domain name on the basis that it is more legitimate for me as an autistic person, having some involvement in the world of advocacy to claim that autistics speak for autism in Europe and not organisations whose motivation is to falsely claim that they speak for autism, be that Autism Europe or anyone else.

Given the controversial nature of the claim I have just staked, I intend to keep it in the words of the advertising standards authority in the Uk:

legal, decent, honest and truthful.

Therefore I will not entertain any "NT" bashing or other slurs, I will maintain instead the position of equality of all persons no matter what their neurological make-up.

Because there is at present no one organisation run by autistic people that has a monopoly claim to representation any more than any other, I intend to use the site mainly as signpost to the multifarious world of autistic advocacy, with the usual "health warnings" that such sites as can be found via hyperlinking do not necessarily reflect the views of the this particular author. Though you can be sure that I will, because this is an EU domain, lean towards the much neglected European perspective.

Don't expect wonders from this site overnight, I am well busy at the moment, with my research and my various comings and goings in the autistic world.

Social Service

Laurentius has friends believe it or not and they tend to get on at him for being a recluse and try to get him to come out sometimes.

Well I did so the other day but had to explain that because of my studies and my other involvements that I had at least five better things to do, two that had deadlines in the next week and one that was already overdue.

That's my life, you have seen one of my mindmaps, the one for tasks outstanding is even more frightening in the number of branches.

I don't know who I am sometimes.

For instance I am going to London again on 5th February for an NAS launch, but I have booked my day out.

I am spending the morning with the NAS publicity guy as I have a lot of outstanding issues to be discussed with him (you may recall my challenge from an earlier blog) So I will have my advocacy hat on. I then need to take advantage of being unlike Elvis and still in the building to use the library, and I need to interview one of the staff members, so I will have my researcher hat on.

When I go to the big bash at Houses of Parliament (hoping I do not hold up the queue to get through security as long as I did last time because of all the OCD gear in my bag) I shall ostensibly have my NAS trustee hat on, wherein I am supposed to be nice to everybody, but I will have another hat on too, because I need to use this schmoozing opportunity to tap any potential "celebs" to get there support for Autscape.

Not forgetting the two papers I am writing and my next neurologist's appointment, or the endless hassle of phoning people up who are tardy in replying to my requests to use there facilities for my research.

Well this time last year I was heading for a breakdown, no me, not my lLandie (as that allways breaks down)

The first part of my research is now live

I have now got permission from the ethics committee to launch a questionnaire on line.

I hope some of you may trouble yourselves to complete it, never mind it's faults, I am sure you will find many :(

I expect I will later on as well :( :(

I hope all the regulars here are convinced of the bona fides and you can keep up to date with the research on my research blog. http://autvideo.blogspot.com/

The survey itself is here, http://www.survey.bris.ac.uk/bham/autvideo

and only I can gain access to the results or information so it is confidential.

If you are answering from outside the UK, the ethnicity data is UK centric, however you can fill in a section to say that you are not UK resident, and that would help me know where the replies are coming from.

Naturally it would be extremely difficult for non UK residents and people who are distant from Birmingham to participate in the next stage so my apologies there.

Academia takes it's toll

I suppose, looking back that my blog has been much concerned with the trials and tribulations of being and Aspie in Academia.

I left the relative security of taught courses in further education for the insecurity firstly of a distance education course, and now research, travelling deeper into Terra Incognita with each move.

I know it is difficult enough for most of us at any level of education, either as children or adults. Support did not exist when I was a child and the whole ethos of education was radically different from what it is today (not that either is better than the other they are both as bad)

I was pushed toward University when I was younger, but I was clearly not ready for it, either academically or socially.

Today I am maybe more successful than many of my peers simply because I have all those years of living in the world behind me. In a strange way I never felt fully adult until both my parents were dead.

Nonetheless my particular path is not one I would recommend to any other aspiring Aspie academic, it has been taken of necessity rather than choice, both because of the limited funding available to me, and the choices dictated by my initial lack of the right qualifications. It is also a function of the callous disregard that this government has towards reskilling people of an older generation http://news.bbc.co.uk/1/hi/education/7178836.stm

For those of us who were not successful the first time round this is devastating news, socially, economically and educationally we are being written off.

For me nothing is certain, I was just about able to pay for my studies last year, and at the moment I have embarked on a long process of research with no certain future so far as funding is concerned.

Research that is not just for it’s own sake but I hope will make a difference to the understanding and conceptualisation of autism as well as having pragmatic applications for the design and delivery of education to my peer group.

It is something, whilst I await ethical approval and all the other bureaucracy, which is taking me deeper into the realms of cognitive neuroscience.

That is the problem with my research, it was bad enough last year having to deal with the lack of structure brought about by a non resident course, now I do not even have the structure of modules and guided learning to comply with. It is not so bad for all researchers, many will find that they simply slot into an already determined research programme, not for me alas.

I do find however that mind mapping software is invaluable, because I can keep my notes all linked within this structure albeit it is getting somewhat re-entrant in the complexity of its loops and links as you can see from the illustration that heads this blog, though in a way that appeals to my mind which seems to revel in multidimensionality. I have already conceived of a vast array of statistical tests I can carry out on my first questionnaire in order to see how many different sub sets I can create from one set of data :) All of that somewhat off topic perhaps.

According to my supervisor I am well ahead of the game, many students not having reached this stage until the second year, but without anything to guide me I actually feel awfully behind.

I have a desperate schedule to keep up as I have already been accepted to present on my Research in September, and before I can even get ahead with writing that paper I have committed myself to writing another of which more anon.

In some peoples eyes this would make me a despised “super aspie” but it has taken me more than forty five years since infants school to get this far, I am way behind Temple Grandin, Stephen Shore and Wendy Lawson as if anyone is counting.

End of year Nightmare

I always lament that New Year of latter years seems to have become an extended holiday in itself like Christmas, that comes so soon after that one runs into the other making an effective period of stalemate for everything involving public offices being open, and public transport being reliably normal.

Once again it has frustrated me in that I entered the Christmas Holiday with matters unresolved that will await at least till Wednesday and probably sometime after that before they begin to get sorted.

First and foremost is the progress of my research. I have been awaiting ethical approval before I am allowed to recruit "vulnerable" volunteers, but if I don't get that soon, it means I miss various publication deadlines I was relying on to get the information out, which if missed could hold me up for months rather than weeks.

Not only that I have got to find some means to fund my next years research anyway, if I leave it much longer I will not have time to get decisions back in time to continue next year.

And then there is my Landie to sort out, It may have got me to Wales and back but seems to have blown a head gasket in the process, earliest I can even get it looked at is Wednesday, and I need that transport for getting to Birmingham and back at times when public transport cannot be relied upon.

Above all there is a huge uncertain in my life, and that is the possibility of building work, which several months ago was promised to start in January, but of which I have heard nothing since. This means like everything else with the housing association including my eventual demolition and move, it is behind schedule, or it could be imminent.

When it arrives it will be mightily inconvenient to everything else, and more so if it happens without sufficient notice to make some room in the rooms destined for work to be done.

In between that I have other things to fit in.

Autreach, Autscape, the NAS, and other autistic related stuff.

The worst of all is that since Christmas I have become indolent, overcome with general post Christmas malaise as my usual structure has disintegrated. Life is unpleasant for me at the moment and I don't feel at all well.

Prioritising the long list of things I now need to attend to is going to take some adjustment and there is so much that has got behind, that I have not been able to do simply because everyone else has been taking time off to be concerned with Christmas and New Year

I'm getting too old for this.

I'm getting too old for this.

Me and the landie both.

I got back from Wales (just) as it seems at the moment as if the landie has blown the head gasket. I came spluttering to a halt about ten miles from Coventry with serious misfiring problems. Well I did get back under my own power, but looking at things, it has all the symptoms of a blown gasket.

I am stiff all over too, perhaps it is time to call a halt to my Christmas jaunts this year and do something more normal in future. Never mind anything else my bank balance won't stand it.

So how did it go?

Well the weather up till Christmas Eve was freezing fog, which did not look very promising, but on Christmas Eve it changed to rain. Well at least it was raining in Wales a constant downpour which made my stay in the back of the landie somewhat damp. I was not able to enjoy the stars (it was a full moon anyway) on the lake shore as the lake was full to capacity and where I had sat out before was under water. I went for a walk though.

The following morning after a night which felt colder than the year before. All that rain falling on the landie effectively turns it into a refrigerator, I got up before dawn, and drove out in what was a rather unpromising morning of fog, however as the sun got up the mist was only in the high places and the combination of morning sun and mist made for some spectacular pictures.

So that's it really, my journeys are never without incident as the near breakdown on the way back proved once again.

Yes Virginia it does snow in Coventry

This photo was taken only about one quarter of an hour from where I live for despite the desolation of living on an ex Council Estate there is beauty to be found, and living on the edge of the City it is not far away.

To be fair this is not a recent photo but we did have brief snows only a fortnight ago.

So will I carry on my ritual visit to Lake Vyrnwy this year? Only God knows, but I am back on track.

Of course if the weather is particularly foul (we have been having freezing fog today) there is always the matter of common sense, and whether my Landie will start when I turn the key, is always, like a child unwrapping a Christmas present, all in the expectation but apt for disappointment.

I actually figure now I don't go to Wales for myself any longer, and last year I was not feeling well at all, but because it has to be done and it is all for you :)

To see the pictures when they are uploaded. Here you go.

Life's ups and downs.

Today has been a day of both disappointments and satisfaction.

To get the bad out of the way first. The door on my Landie has been damaged by a thief trying to get in.

It shows the thief's ignorance of the vehicle because there is no latch on the inside which will release the door, once locked from outside, and once in the thief would have had to remove the clutch claw and given the problems I have had starting would not be that amenable to hot wiring.

Everything inside is also locked down still, it was a major inconvenience and cost which has meant my landie being stored somewhere safe until I can get a replacement for the damaged door, not the best time of year for this to happen and I hope I can get it sorted in time for my annual excursion over Christmas, which has to be a little in doubt now.

The good news is that I have had my paper accepted for the NAS International Conference in September though I am only a sideshow and will have to compete for attention with keynote speakers like Stephen Shore and our very own Rita Jordan from the Uni of Brum.

Still it will be a change from the obligatory Self Narrating Zoo spot as I shall be presenting as a bona fide researcher, my autisticity (now there's a new word for you) being effectively irrelevant and my elasticity paramount.

Well that's not bad considering my research is only one term in and there is nothing to report yet.

But there will be as this is part of my mission to put us at the centre of it all.

Something to blog about

At last there is something worthy for me to blog about.

I read this on a BBC site about the new educational diploma, something I am set against because of the way it will further disadvantage autistic people.

It is not hard to see why when you read statements like this.

"The head of the Enterprise Business Unit at Vodafone, Kyle Whitehill, probably spoke for many employers when he told a conference that "the two most important skills in the workplace are interpersonal skills and presentational skills".
He did not, please note, prioritise acquisition of academic knowledge or evidence of the ability to memorise large slabs of information. "

Now what I find particularly ironic, is the fact that Vodafone was until recently a major funding partner with the National Autistic Society. And that funding was essential in developing the campaigning services and preserving the prospects service.

In the light of the statement I have just repeated it almost seems like "blood money" or a salving of conscience.

Well to be fair I have to be critical of the NAS too in so far as a service like Prospects goes. Prospects has like Autism West Midlands Aspire and many other local job preparation services, suffered from a major flaw.

That is that these services (and I think it goes for other disabilities than autism too so I am not being picky) attempt to adapt the square peg to the round hole. They are not predicated on the social model of disability in which it is the attitudes of companies like Vodafone, that create the disabilities.

Returning to Mr Whitehill's statement. I do not disagree that there are some areas of employment where presentation and social skills are important, but not in all of them. Vodafone may be a company who promote an image that they are about communication, but behind that communication is a lot of technology. Where would the company be without surly engineers? Indeed where would the 21st century be if clean teeth and a broad smile were more important than technical competence. Golgafrincham perhaps?

I have witnessed over the years the way the society I live in is exacerbating the disability of Autism and all the other neuro diversities such as Tourettes and Dyslexia.

We are in for hard times, because whatever you do, you cannot expect a race horse to pull a brewers dray, you have to lighten the load, to adapt.

In a time when there will be a skills shortage Vodafone, by adopting attitudes like that are shooting themselves in the foot.

Peter Hain an erstwhile champion of seemingly impossible causes in my youth has now become an ossified mainstream politician complaining about workshy disabled people who have the capacity to work, but don't.

Well we autistics are well down in the league table of employment, and isn't it obvious why? It is not us but industry that needs to adapt, or return to good old fashioned common sense.

So as my contribution to most recent NAS campaign "Think differently about Autism" I am offering a challenge to Mr Whitehill if he is reading this. Are you prepared to meet with me and discuss this further? It is a challenge I mean to keep. And the word of this "Aspie" is his bond because I will be following this up.

Ps. for the record I am with Orange these days (not that I expect they are much different when it comes to their human relations department)

Christmas is a coming and the Landies getting phat.

I have not blogged in an inordinately long time so it seems and a lot has changed since I last appeared here.

Whatever I am on course academically, and for the moment financially stable, so my gamble paid off in the short term.

Not everything is going smoothly though, for although I am probably well ahead of the game in terms of the majority of my post grad peers, what I lack is their gullibility, in that I have not been enamoured by a series of courses in research I was supposed to take. I have inevitably fallen foul of NT professors who do not expect the aspie inquisition.

I have had to withdraw from these taught courses for this year, perhaps permanently who knows.

I have realised that I am not best situated in the School of Education, and that my research is to a large degree a lot more psychologically oriented, and a hell of a lot more rigorous in my intentions than what passes for research amongst the jaded cognoscenti resting on their peer published laurels.

(but I would say that)

I intend to go about this in a somewhat new and innovative way in that I shall shortly be creating a new blog somewhere and a new list to allow the participants in my research some say in it.

But for now, Christmas is coming up, and I am hoping that two things will happen, that the weather will be good on Christmas day and my ever perilous landie won't let me down, because inevitably one of these years I will return with no pictures worth posting.

But for now, (no-one ever said we were not repetitive) I shall leave you with a link to my latest exploits on youtube incase you have not seen this so far.

Raising stimming to an art form. NAS the musical (well not quite)

Philosophiæ Doctor hic venio

Or PhD here I come!

I guess this is going to be the smuggest, most self satisfied and self congratulatory post in my career of blogging so far but I am really as chuffed as a bowl of badger fat to discover that my gamble has paid off and I have been accepted for doctoral research at the University of Birmingham.

In making this announcement I have to acknowledge my thanks to those various bloggers who assisted me in meeting the shortfall of my fees this year. If I had been forced to drop out, this would be happening now.

What am I going to research?

Well there are a lot of videos out there purporting to say something about autism, either to families, to professionals or the world in general but nobody has ever bothered to carry out any objective research into what good they actually do. (if any at all). In carrying out this research I am combining the skills I learned from my media HND, which allow me to analyse and deconstruct video according to well established practice, with the academic and personal knowledge of autism I have gained in my current and earlier studies at Birmingham (and work in advocacy generally).

I suppose I also ought to be thumbing my nose at the faculties of psychology at Warwick, Leicester, (and yes Birmingham too) who a year ago decided I was not qualified enough to pursue an undergrad degree in psychology.

Well less than a year ago, I entered Birmingham University as an undergrad, not all that long afterwards progressed onto post grad study, and now I am ready for doctoral research. That has to be something of a record progression in any University!

Not only that I have in 16 weeks of study at an evening course, gained the equivalent of another A level. The City and Guilds 7302 qualification in delivering adult learning.

Naturally this is only the beginning, but a fine new beginning at that, ten years on from my mothers death. I only wish she were here to see it.

There is a lot of hard work ahead, not only adapting to a different style of academic work as a researcher, but in writing off to all and sundry in order to secure the funds to keep this study going over the next few years. I guess I shall have to be a little more polite about (or as someone else has pointed out, 'to') my fellow researchers from now on :)

Silly games ... Eight Random things

Memesis indeed

I have been tagged by the power of 8

These are the rules, until I deign to break 'em.

The rules:

1. Let others know who tagged you.
2. Players start with 8 random facts about themselves.
3. Those who are tagged should post these rules and their 8 random facts.
4. Players should tag 8 other people and notify them they have been tagged.

Here goes and it don't get more random than this ....

1. Fool: The reason why the seven stars are no more than seven is a pretty reason.
Lear: Because they are not eight?
Fool: Yes, indeed: thou wouldst make a good fool. King Lear Act 1 scene V

2. I have three nipples

3. Yesterdays, yesterday was the tenth twelfth by my reckoning

4. There are thirty cameras visible in my room

5. There are thirteen notes in an octave and seven flutes currently in reach of my hands

6. I told the anaesthetist that the first thing I would say on coming round from my recent operation would be a number, the same number I quoted when I came round from the operation last year 823543

7. October is the Tenth Month wherein I will have as many years as there as usually weeks in a year.

8. It is entirely a falsehood that all aspies are obsessed by numbers, does it look like I conform to any stereotype there?

If this meme should die I ought to tag no-one therefore I shall tag Vicky of the new blog. Mike of an older one (cry havoc and let ship the logs of yore) Kristina whose blog changes so rapidly I can't keep up with it.Promefeus cos it's all greek to me and my liver is in danger. Autiemom who has not blogged in a long time that I can see. I am tempted to tag Four Sam but maybe Best forgotten and now I have run out of numbers oh Deer I never could count reliably and I prefer the rules of Fizbin which like Wikipedia are forever being updated, so why ain't the tags eight? Because they two plus two equals six and thats why!

Larry

Ten years ago this day

Ten years ago this day, my mother died.

You can read the story here and you can read more about her on this link

So where am I ten years on in the vacuum? There is much I would like to have achieved but have not and it has taken more than a few of those ten years to get over the vacuum in my life that was left when my mum passed.

I had hoped that I could look back by looking at the future, but I am still waiting to here if I have been accepted for doctoral research at Birmingham. Oh well no news is good news at least, as the saying goes.

Much has changed over that ten year period, not least the Prime Minister, as I blogged previously.

There is a great deal more access for physically disabled people than there was (but not enough) and there are wheelchair spaces on public transport, on trains and in taxis, something we campaigned for together and were told at various times was impossible.

However I increasingly appreciate what it was like for her now as I succumb to the pains of unreliable joints myself, hoping that I do not ever approach her score for operations, which seemed to be at least one a year. I am hoping I will not need any more for some time.

She had an expression, that she would have used as the title of her autobiography if she had ever had time to write it. "I don't have time to be disabled" and neither did she, it was a very hectic life we led and she was a very difficult act for me to follow, but as I board another train for London next week, for yet another NAS meeting, I know I will be doing right by her and that my activism in the autistic world is something she would have appreciated.

As for me, I don't have time to be disabled either, and to make such a statement is not in anyway to belittle those people who are not as active, but if there is a job to be done, then someone has to do it. I don't have time for those petty arguments which seem to be dividing our community at the moment, who is more disabled than who, who thinks autism is not a disability, that is all to misunderstand everything about the relativity of it all and to leave out the human dimension. We all have needs, and we have a right to have those needs met. However no rights exist where no one is willing to fight for them.

Those who think I am too much in the public eye, should stop and think whether they would really like to be so visible and subject to the vile criticisms that come with it.

My mum is past that now, and her monument is the good that she did, and that she will be remembered by.

Gone Fishing...

Well not exactly.

If you don't see me about on the web for the next couple of days or so that is because I am in Hospital for an operation. May not be posting much after that either depending on how my hand feels as it is a hand and arm operation.

So don't think I am ignoring the world or avoiding arguments, I am just indisposed.

(ps these are the stitches for the one I had done last year)

The one eyed King welcomes the one eyed Prime Minister.

At last we have a new Prime Minister not only is he one eyed, but he has been accused of being autistic (in an unfortunately pejorative sense) too. (click on the link to find out more).

Well Gordon, when your predecessor came to Parliament in a landslide victory I posed ten challenges about what he was going to do to redress the balance of the previous Governments misrule over disabled people.

I shall pose again those ten challenges from 1997 with a summary (in red) of what has been and what remains to be done:

• 1. Immediate and emergency action to ensure that the Lords decision in the Gloucestershire case is invalidated. That is we demand a restoration of a needs led absolute duty upon local authorities to provide the care in the community
  

• This was never reversed and today the situation has worsened to the degree that local authorities continue to be able to evade statutory duties on cost grounds.
  
  
• 2. The government to take whatever fiscal means are necessary to ensure that local authorities have the resources to spend on care/adaptations and assurances that these funds will be ring fenced so that they cannot be spent on other non related services.
  

• Goes without saying that it has not!
  

• 3. The introduction of new regulations giving statutory powers to the Disability Council to pursue and where necessary prosecute cases of discrimination, on the lines of the equal opportunities and racial equality commissions.
  

• The disability rights commission replaced the Disability Council, but now we will lose that within an overarching equal rights body which has already been criticised for weakening the force of what legislation we have.
  
  
• 4. The Immediate implementation of remaining sections of Tom Clarke's 1986 Services and Representation Act and an end to the delay in implementing the extensions to part M of Building regulations to include housing.
  

• It never happened, instead we had the Community Care act, not essentially focused on disabled peoples rights and not leading to adequate assessments or provision. Jack Ashley has recently proposed a new private members bill but will it be allowed to progress?
  
  
• 5. The government to bring forward the dates for implementing next stages of Disability Discrimination Act with regard to the duty to make adjustments and the introduction of transport regulations.And to allocate finances from the millennium fund to facilitate this as the only proper and lasting way to mark the new millennium.
  

• We had to wait long enough, but the final provisions are now in force.
  
  
• 6. An Immediate review of recent social security regulations which have had a negative impact on disabled people. including the scrapping of housing benefit cuts for single people under the 60. an overhaul of the incapacity for work test, payments of DLA mobility whilst in hospital, restoration of full backdating of benefits and last but not least revision of the rights of appeal which have been steadily loaded against unrepresented appellants.
  

• It has only got worse with new legislation once again penalising and victimising disabled people as work shy and scroungers.
  
  
• 7. Parliamentary reform to ensure that private members bills relieve a proper hearing and are only ever defeated on legitimate grounds not the ruritanian procedural farces we witnessed all too often under the last government.
  

• There have been some Parliamentary reforms including the abolition of hereditary peers and some of the stranger procedural customs, but private members bills such as the Independant Living Bill refered to earlier, still face an uphill struggle against official business.
  
  
• 8. Reform of the legal system to ensure that individuals are given the resources to challenge government and local authority decisions quickly and easily whilst limiting of the scope for local authorities and government to involve individuals in lengthy and potentially expensive appeals to a circus of higher and more remote courts. A Courts judgement should stand and should only be counter challenged in exceptional circumstances if a judge in a lower court does not have the legal knowledge to make such a decision, then that judge is unfit to be in office.
  

• No way :( do you think the judges and the lawyers would ever agree to universal access to justice? Legal aid reform has neither made access to law easier for the disenfranchised elements in society nor reduced the exorbitant fees that lawyers charge for doing less than it takes me to write this blog.
  
  
• 9. An end to the massaging unemployment figures by inappropriate use of poorly funded and administered "training courses". Everybody should have equal access to suitable training without it prejudicing their rights to benefit and forcing them into unsuitable and short term expedient courses or low paid work.
  

• I am not sure about the figures, it is not like it was under Thatcher, but the quality of training has not improved one jot, is equally irrelevant and poorly administered by companies who milk the nations taxes to merely massage the figures.
  
  
• 10. Finally if these demands appear to be overtly political so be it. Charities should have the right to engage in the full political process without restraint. If it has become apparent that one or other named political party has become inherently resistant to the principles of equality and human rights which the charity stands for it is both a duty and a right for that charity to actively engage the issue and not step around it for fear of incurring the wrath of the charities commission.

• Hear hear to that, we still labour under antiquated Elizabethan throwback charity law which was not designed for the modern age. It is about time the old categories of charity were simply abolished and replaced by a simple European wide registration category for not for profit non governmental organisations which would allow overt political challenge to the status quo in any European state without compromising tax advantage, so long as they were genuinly organisations for the welfare of Europes citizens, controlled and directed by the categories of people they represent. Yes NAS unless your policy is set at top level by autistic and neuro diverse people, you should pay a tax penalty !!! That is not force, that is incentive...

The reality of my autism.

I have often used the phrase, running up the down escalator to describe the way my life seems to be rushing ahead to stay still.

Amanda Baggs has portrayed the reality of her autism in 'Getting the Truth Out'.

The reality of mine is rather different as this article shows. The article is not real, it never appeared in a newspaper, I just made it up to look as if it were a proper article a few years back now when I was studying media, not a bad attempt at getting inside the skin of a journalist eh? It was the same time as I made this following video for the same course which is now on youtube. Unfortunately for me even though my life is full of positive goals, not a lot has changed in my environment since then, the flat is still condemned with the date being forever postponed.

No my life is not like others who are totally isolated either for I have a very active outside life with my academic work and my work for the NAS and other groups and that is the problem.

It all came to breaking point not very long ago as I have blogged, when I faced total psychological collapse, and I am only just bringing myself back from the brink and can see the stress building up again.

The problem is not that my support is breaking down, it simply is not there.

I live as the article portrays, in environment that is totally unsuited to me, in a flat which I cannot properly maintain in order or cleanliness, which is altogether the wrong place for me to be in terms of size, location, and state of repair, threatened as it is with demolition with no prospect of having anywhere more suitable to move to, which really meets my needs, because replacements are not being built fast enough, and nobody is building autistic or disabled friendly either. Three flights of stairs daily is getting to me.

Not only that the mechanisms that gave structure to my life when that was written are not there either, the mechanisms that ensured I ate regularly and healthily for instance.

Here I am making plans for the future, to stay on top of the world of autism, making an input into it via research and advocacy and I can barely keep myself going at the same time.

I am fearful of another collapse and it does not take much.

People only ever see the public aspect of me, whether that be at meetings, or at tutorials, at conferences, or through my writings on the internet.

You don’t know inside of me at all, and yet the hypocrisy is there all over. If I have the slightest failing in the way I present myself to the world, I am hammered for it because I am not allowed to refer to my autism as any kind of limitation or stressor. For it is not the limitation of autism per se that is difficult but the stress of functioning beyond its limits without anyone being prepared to accommodate for them.

I am either considered too intelligent to use autism as an “excuse” or damned if I do for "malingering" and for wanting an easy ride out of the pit I have dug myself into, or then not even allowed to play the autism card at all because that would be considered to be patronising me. Well equality is not ignoring the condition, it is taking proper account of it and creating a "level playing field"

Whichever way round when society has labelled you with a disability (which need not necessarily be autism) you become a performing circus trick as my mother did before me. A public property whose popularity depends upon perfect performance every time since the audience allows no in betweens, once you fall off that tightrope the mob will turn on you for letting them down. (viz my recent savaging at the hands of the autism hub

But the article concludes by reference to the Human Rights I want;

That is all that Larry wants, not charity, not tear jerking human warmth stories but the right to make his way in life on equal terms with the next person.

Forks in the road or "whosever diggeth a pit shall fall in it."

Those of you who know my main website will know the poem that introduces it which really sums up my life.

I am at another of those forks and don’t yet know the consequences but it reminds me of the way my life and career has been shaped by all those forks in the road going way back.

What brought on this bout of reflection was the necessity of filling in the same questionnaire I filled in back in 99 before being diagnosed in 99 and here I am, having been referred back again to the same department filling in the same questionnaire (of which more later)

Any way it has been a tortuous path to get to this particular fork, but each turning has confirmed the direction I would inevitably go.

Right now I have given up the chance of completing a Masters degree because of the cost. That leaves another pathway, either nowhere back amongst the plains, or a steep path up in the mountains barred by a high stile. If I get over the stile I go on to a PhD but if the stile is too high I end up back in the plains, whereas following the Masters route might have possibly got me to the PhD eventually via a longer route but without the particular obstacle I do not yet know if I can surmount.

But enough of that. My ways had actually been set long ago. I know more than ever where I want to go now and what stands in my, but back when I was eleven or twelve how was it?

Back then I thought that one day I could become an architect, my passion then being for drawing plans of houses, shopping malls and whole cities, never mind the odd cathedral or skyscraper.

Even before then my destiny had been set for I went not to a grammar school but a comprehensive. Well I don’t think I would have survived in the hothouse atmosphere of a grammar either, but that would have been another story.

And so it was that by the time I was twelve I was already being pushed in directions that were not what I wanted. I was not allowed to take Art beyond my second year or Technical drawing as I was not considered to be technically accomplished for either of them.

Even so if I had followed those courses I would still have been frustrated further down the line by a failure in A level maths since entry to a technical subject like architecture would have required something more than my dyslexic creativity alone allows.

Indeed I took a path that avoided A level maths and because I was a good mimic and seemed to do well in French and German I was pushed along the path that led to failure in languages instead as they became more advanced and bogged down in grammar.

I took a notion, then that I would be a lawyer and I might have been a good one for all I know, but by the time my A levels came I failed to get the grades necessary to take me to a good law school. It was already too late, so even though I got to Uni by the back door, through clearing for a subject that was related neither to law nor architecture, I was still without a maths A level in a subject that really demanded one. I got by on the condition being that I took an equivalent maths course at Uni, until you know what? I failed it L

So there you go obstacles were waiting there for me whatever road I took. Would I have passed my law exams if I had managed to get on that path? Probably not any more than I was able to pass my finals for politics and economics, the time wasn’t right.

Well so you see, decisions made on my behalf without understanding what my educational difficulties or strengths really were and the lack of knowledge regarding how dyslexia and unrecognised autism impacted my education governed so much of the future.

It could not have been much different I suppose for any of my generation of less obvious autistics. Society had got it in for a lot of folks and school was not so much about education than about being forced into social conformity whatever conformity was expected of your particular class, race, gender or neurological configuration.

And so fast forward to another fork in 1999 when I had to fill in that psychological questionnaire, that eventually led to recognition and diagnosis. I was in different situation than I am today, I was broken under the weight of circumstance and clutching at straws. I had managed to persuade my GP that I should be assessed by a psychologist rather than a psychiatrist, but I had the feeling he was only humouring me, expecting I would be back for a more conventional dx of sommat narsty in the woodshed.

I am cognisant of Amanda’s recent post about power relations and inequalities. Back then in 99 I was still afraid of what the system might intend for me, I had the spectre of Schizophrenia to afright me. Yes I remember all those old forgotten posts that others have affected to find, about Amanda’s past too, no big secret.

In the interim of awaiting a diagnosis I allowed myself to be prescribed an antipsychotic (Risperidone) and nearly succumbed to allowing a cocktail of psychotropics as it was suggested I supplement Risperidone with an antidepressant since it was doing nothing for my depression (and what else would have been a chaser to the side effects of the antidepressant I wonder if I had given in and not said enough is enough)

Well it is interesting that this time I have reached the same point via the psychiatric route and have been referred back to the same psychological services who diagnosed me with AS.

To be honest I do not think the diagnostic process back then was a good one, I was very afraid of the system and not as open to talking about things as I am now It was not the psychologists pronouncement that finally convinced me I am autistic at all, but what I have learned since from my peers and from my studies that convinces me that in spite of the provincial ignorance of one Digby Tantum's disciples (he is no friend of mine I can assure you) the dx was not wrong.

Today I feel the power relationship is different, even at my lowest ebb having been temporarily admitted as a psychiatric emergency and communicating via my laptop, I still had more credibility than I had as the flotsam of the system I felt myself to be in 1999, a lot has happened in between.

But what of all those who are still the flotsam and jetsam in this turbulent sea of psychiatry and psychology? What of all those who are wrongly diagnosed with psychotic conditions which then become an iatrogenic self fulfilling prophecy like the case of Piers Bolduc?

Now we have (not so) new mental health bill being debated in the commons in the teeth of opposition from nearly every mental health charity where the Lords amendments will be rejected because of nothing more than a Government's fear of the fear and prejudice of the people who they think elected them to make our country safe from "psychos and Muslims".

And who will it be tomorrow, cyclists and vegetarians perhaps?

Will the new mental health bill when it is inevitably made into (bad) law like the dangerous dogs act, prevent injustices like that suffered by Piers Bolduc, or will it make it all the more dangerous for all of us.

Does anyone care, when the autism debate seems to have trivialised itself and been caricatured into lame arguments about chemical causation?

Who is blogging about our human rights?

Never mind forks in the road, someone is digging bloody great holes and pitfalls in it.

We are a small axe up against a very big tree. But when it falls let us hope the sound rings around the world.

A reply to lies and calumny

It should not have come to this that I have to start a war of blogs because I am not allowed to reply to an untruth on a particular blog.

However the record is this, with respect to the journalist that Kevin Leitch alleges I did not contact, I have specific proof which I can furnish to anyone who contacts me privately that not only did I contact Emine Saner of the observer (if this is who Kevin means) and spoke to her on the phone, but that I have a transcript of what I said which she returned to me.

So now let the public judge, whether Kevin Leitch is acting the dictator in all this. He is not interested in any olive branch because he has made an open statement in an arena he controls against me and has not allowed me nor any body else who mentions my name right of reply. It seems that the parallels with Animal farm are all too real.

Where are your fine principals now Kevin ? I have hurt your ego, and you react like a spoilt child.

Do people now see why we must set our own agenda and reject those who purport to be our allies but are full of contempt.

And might I add that Kevin has gone back and deleted my replies to his various assertions on his previous blogs, that is total control freakery and suppression of anything he wishes to cover up.

Do as you would be done by Kevin, you have lost the argument for sure and I don't think too many people are convinced by this any longer, that I have suddenly become more of an enemy to you than John Best Jnr !?, there is something very very wrong if you regard me in that light.

The Citadel.

This September may be the first time in 8 years when I am no longer able to record my status anywhere as a student (at least officially anyhow) in that personally I have little hope of actually continuing my studies even if the PhD proposal I completed today and submitted is accepted.

Indeed for I would be banking on rather a lot to expect it will be, never mind that I am still way behind in the completion of my PGCert

So rejection will be my fate, some things are insurmountable.

It shouldn't matter, because I won't be the first, indeed there have to be thousands of us who are academically able who can't study, indeed thousands who don't have my abilities who should not be denied the right to study at the level that is right for them either.

Why does it matter?

Well it has been my objective, to give academia a kick up the backside too - for being too busy doing something about us without us. So that when I ceased to study those things I am most able at, in the realm of the senses, art, video, music etc. and turned to autism itself, I wanted to change the way that autism is taught about, to deconstruct the very writings and learning materials themselves to expose that they are not objective, that they do come from a perspective.

The day I yelled at Amaral not to use the cure word, I hope he got some sort of a message. It was not a scientific deconstruction of the work of MIND for sure, because that was even easier to accomplish than shouting at him, being as his methodology did not stand up to scrutiny any more than his obliviousness to the offence of his terminology.

However I would much prefer to challenge the ignorance, the 'para science' of these esteemed self perpetuating monarchs of the genre, on their own ground through the peer reviewed journals, but to do that I have to establish myself by the same standards, and that takes not only ability but serious money.

Yes sometimes credibility is the name of the game (unless your name is Geier that is), and it is something you have to earn playing by a set of rules that has you 'handicapped' in the old original sporting sense, from the outset.

If you google on my name, the para scientist Larry E Arnold is chasing my tail. I am in the wrong game for sure.

I have said in my DVD that beyond the so called Triad of Impairments, there is a sociological Triangle with autistic people at the base, parents on one side and academics/professionals on the other.

Now in the war of words, the talk about autism, the parents and professionals alike owe there right to speak on the subject to our existence, for if we were not, what would they have?

I am at the base so I can kick away at the two sides equally. Yes I have kicked at the patronising assumption that parents have as much right to this debate as we have, and yes I also kick at the ignorant assertion that the professionals and academics have any more rights than the parents to define the phenomenon of autism and how it should be studied.

Nothing about us without us. Dr Temple Grandin has her doctorate in Animal research. I want mine in Autism itself.

I resign from the Autism Hub

I no longer wish to be associated with a forum that cannot take criticism from within.

I no longer wish to associate with any cosy self congratulating world that does not accept the outsider.

I wish to be free to say what I will without any thought of that being associated with a particular "party line"

There are many more autistic blogs out there, than are represented by the hub, and for sure a lot of them I don't agree with either but what is wrong with that, let a hundred flowers blossom!

I will let my blog free float with the rest of the autistic blogosphere.

And my final word - Neurodiversity as a concept arose within a wider disability movement, it does not belong to Autism alone.

Two sides of a very particular argument are distorting the image of what disability means in a wider societal context where autism is just one construction or label pertaining to the way in which people are discriminated against, devalued, disenfranchised because of bodily and neural differences.

You can't make an omelette without breaking eggs!

Continuing the Russian revolutionary theme ... (Animal farm was a parody and criticism of the way the Russian revolution ended up in tyranny) I offer the above quote from Lenin. Doubtless some scholar will tell me the quote is a mistranslation of the original Russian and meant something utterly different.

Others will tell me Lenin is not exactly the sort of role model to be quoting anyway, so I will quit that and go to Socrates instead who described himself as a gadfly stinging the Athenian conscience, and look what happened to him :(

The point is, if you are going to make progress in overturning established ideas and ways of doing things then you are inevitably going to upset somebody and that is not necessarily a bad thing.

There are various reactions to blunt criticism, both of them probably involve feeling indignant about it.

One is to slough off the initial knee jerk reaction to having ones ego punctured and realise that if nothing else it drew ones attention to the situation in a way that a subtle softly softly approach would not.

The other is to re-inforce ones prejudice by resort to ad hominems wherein the affronted folds back into there secure world and considers the critic as that nasty piece of work they thought they were all along.

I expect there are both kinds of reactions to my last blog, and so be it, I am not here to be in a comfort zone either.

And if I have broken a few eggs in the process, well my advice is to move on mop up and enjoy a nice omelette.

I suspect however as the pig that walks on two legs I am reverting too much toward my four legged origins and breaking eggs is not going to save my bacon so to end with another quote, from Jethro Tull this time :-

Really don't mind if you sit this one out.

My words but a whisper -- your deafness a SHOUT
I may make you feel but I can't make you think.

Maybe that is all I am "Thick as a brick" :(

Four legs good, two legs bad

I am not the only one who like Joel in his recent blog, can quote from 'Animal Farm'.

As I posted on his blog I very much feel at times like the pigs in 'Animal Farm' who having supplanted their masters in the revolution, now ape their habits and walk on two legs.

As the first person diagnosed with an ASD to have broken what I once thought to be an impenetrable glass ceiling (the metaphors come thick and fast I must be an AC apostate) and been elected to the board of the National Autistic Society, it is not just my fellow AC's I have to be looking at over my shoulder, for their accusations of having 'gone native' , * as I am equally liable to invoke the suspicions of NT parent councillors like Mike Stanton and his colleagues who might think the board are not pushing fast enough for the NAS to serve the needs of the many and not the few.

Be that as it may, the reason I am there is not so I can join the ranks of 'super-aspie' touring circus which Donna Williams has criticised for charging exorbitant fees - would that I had half a chance :) - I am there for the same reasons as I am becoming critical of a lot of posting in the autism hub itself, because I believe in the reasoning behind the slogan "nothing about us without us"

I have to say it, but the problem is that important though it is to disabuse the public of the notions that mercury poisoning = autism (which nobody much believes in the UK as we are still too busy blaming MMR) , important though that is, that is not where the main fight is, and that is to realise that autism is for life, and because most of us spend more of our lives as adults than children, that there we must have proper recognition and a place in society.

Furthermore, that although there are 'good parents' who agree with that and want it as an aim for there as yet young children, the message has to come primarily from us not them. If the parents continue to evoke that old line "but you can speak for yourself my child cannot" they run the risk of effectively taking our voice away, because we are the ones with the condition, the basics of autism are the same for everybody whether we have the IQ of an Isaac Newton, or the IQ of Forrest Gump (not that I set much store by IQ anyway which is another story). Well nobody reading this to my knowledge has met me as a preschooler, so how the hell can anyone compare a child to the adult the child became?

Amanda often makes the point so much better than me. So it is to Amanda's recent blog on privilege I now turn. As the pig who has learned to perform the circus trick of walking on his hind legs I am well aware of the privilege that invokes. In my most recent encounters with psychiatry, even when I was at my lowest ebb and most vulnerable, requiring the assistance of my laptop to communicate I can consider that I was less at risk than my less esteemed compatriots in that what I say these days carries authority. I am secure in my diagnosis for even though the last psychiatrist I saw entertained the common prejudice of the profession that my self awareness betokened very high functioning that she would not have recognised in our interview, she was not going to overturn the diagnosis, or recommend any horrendous regime of medication.

It was not always so. For before I got my snout so securely in the trough 'per ardua', I was not exactly welcomed by the other little piggies who to change the story now, definitely regarded me as the big bad wolf about to blow down their house of straw.

And while I am about it I'll huff and I'll puff and I'll blow Kristina's house down too, for you were indeed lucky that you were not present at the Liverpool conference last year, to have me blast you for your paper, (in suitably Hopkinsian alliterative style and Elioteric enigmacity) for having the audacity to psychologize the linguistic style of autistic utterance, that is fairly and squarely not your prerogative, it is Cosa Nostra and beware the Sicilian breakfast :)

Well I have now risked the hub's ice pick assassin for sure, for being so bold. I was always far too sympathetic with the rebel Snowball when I read Animal farm for the first time :)

* footnote, I was surprised to discover that Anthropologist Structuralist Claude Levi Strauss -the man who put jeans on the Amazonian tribes :) - was still amongst the living.

Mystery Ilness, where's House when you want him?

I have not been on the blogger map for a while.

I have not really been myself for some time as it has not only been the anxiety of University, finances and benefits that have brought me down, but a "mystery" condition,

It manifests itself with twitching and/or cramps in various muscles varying from muscle jerks to barely detectable but constant vibration. Most worrying of all is the way that my tongue has been non stop twitching for over two months (maybe more as I first noticed a couple of months ago when ironically I lost my voice shouting at the phone after making an appointment with the neurologist)

It is difficult for me to know whether what these muscle symptoms are, for instance are they related to the various parasthesias, I have in my hands and sometimes my leg and feet which are supposedly from trapped nerves, or is it something else.

Whatever, if I count in the parasthesias, I find myself looking at the possibility it is not trapped nerves at all but demyelination as per something like MS.

If I look at the tremors, like the desire of my teeth to be chattering all the time, and finger and thumb tremors in my right hand, I start thinking Parkinsons, but worst and most frightening of all is the tongue twitching. Especially when you start thinking what it might be and then find you have difficulty swallowing or pronouncing words.

The good news is that I have had the neurological exam now, and there is no weakness in any of my muscles, or bad reflex signs or anything to indicate a progressive neurological disease of any kind. If the EMG test which I will probably have to wait months for is clear, then I am in the clear completely, however I am still left with the twitching, the cramps and the tremors which is annoying to say the least.

For what it is worth I have had muscular twitches of one sort or another ever since my teens. I first saw a neurologist in the 1980's who did not see them (they mysteriously come and go, sods law they are never there when you see a consultant) he just wrote me off as a clumsy person.

Nothing bad showed up the last time I had an EMG test about two years ago, but the twitches had not migrated to my face then.

If anyone wants to do some useful medical research instead of looking for cures for autism, they can go and find a cure for this condition, trouble is nobody cares about it, because it does not kill you, it is simply an unexplained neurological condition that is left over when you have eliminated all the bad diseases out there. Even House wouldn't have the answers for this one, but it seems there are lots of us out there with the same.

It has been called Benign Fasciculation syndrome a concatenation of words which I find effectively meaningless because benign it is not. Especially when you consider the anxiety it cause people like me who have access to google and a list of the worst possibilities. What scares the living daylights out of most people who have it, is the surface similarity of the symptoms to ALS, in my case with the tongue and face now chiming in, Bulbar onset ALS the worst kind.

Oh well, I am going in hospital for another operation on July 3rd. I will probably die of MRSA or septicaemia knowing the state of hospital hygeine these days. And if I live (which I probably will) there is no guarantee it will be any more successful than the last one, which still leaves me with some problems in my left hand.

The joys of being a pessimist and hypochondriac eh :(

Psst what's that I heard someone say, mercury poisoning ........ :)