Monday, December 31, 2007

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

Wednesday, December 26, 2007

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.

Thursday, December 20, 2007

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.

Tuesday, December 18, 2007

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.

Sunday, December 16, 2007

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)

Sunday, December 09, 2007

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)

Saturday, July 21, 2007

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 :)

Saturday, July 14, 2007

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

Thursday, July 12, 2007

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.

Monday, July 02, 2007

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)

Wednesday, June 27, 2007

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...

Friday, June 22, 2007

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.

Monday, June 18, 2007

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.



Wednesday, June 13, 2007

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.

Thursday, June 07, 2007

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.

Sunday, June 03, 2007

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.

Friday, June 01, 2007

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" :(

Wednesday, May 30, 2007

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.

Friday, May 25, 2007

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 ........ :)

Friday, April 27, 2007

No Minister. Or the Parliamentary Shenanigans

On Wednesday I went to the Houses of Parliament to witness an All Party Parliamentary Group on Autism meeting

I must have meant business since I had my combat jacket on and my flute with me.

The purpose of this meeting was:

This meeting is with Minister of State for Health, Rosie Winterton MP, to discuss autism and the mental health system. HL’s carers from the Bournewood case will also be speaking.

The group will discuss the Mental Health Bill and how it will affect people with autism – in particular the definition of mental disorder and the Bournewood provisions – and the importance of adequate mental health services for people with autism.


Well it might have started out as a tight, tidy, Marquess of Queensberry, Monty Python Parliamentary-polite meeting, but I saw to it that "them's not my rules". Well maybe to avoid the opprobrium of the "men in tights" I removed my hat to walk through the corridors but once I got there, I sat down square in front of the proceedings and set it back on my head for the duration and made sure that I was heard. I made it plain that a stroke of legislation cannot define a category of people as "mentally ill" and that it was a civil rights issue. I made it clear to the minister when she was speaking nonsense, forcing her to respond to that.


Worryingly there was a representative from Autism Squeeks there. Now Autism Squeeks may be on the same side when it comes to not defining ASD as a mental illness and therefore subject to all the intended provisions of possible compulsory detention and treatment, but I made it plain as soon as she said who she was representing, that Autism Speaks does NOT speak for us.


I think the minister got the idea that there was dissension on this issue. Above all, I said to the minister. "Above all, if you go away from here remembering only one thing, remember the word Neurodiversity and look it up"


It is probably the case that I will be around campaigning well after she is out of office, these people don't last long, and it was clear to me that she knew very little about autism.


My main point was about stigma, by categorising us all by legal fiat, I said that she could well be categorising parliamentary colleagues like Gordon Brown, (who has been accused cynically of behaving autistically)


Among the other things I said (you can't keep a good heckler down) was that when it comes to bad behaviour MP's need some constraint never mind those who this law would further deprive of human rights.


You can do these things by the book, and engage in polite question and answer, or you can assume that you will not be given opportunity to make a point so make it the best way you can.

I did it my way.

I think we have lost this bill, in the short term, but because this is something that goes way beyond autistic rights, the Government will have lost this argument in the long term, particularly with the impact of United Nations charters and European Human rights.

And if the dangerous dogs act, a similar piece of Knee jerk legislation never had the effect of making anyone any safer from people keeping dangerous dogs, this particular dog has not lost his bark yet.

And as I left the building I said to the geezer on guard with his machine gun to mind where he was pointing that thing :)

Blogging Against Disablism Day

Blogging Against Disablism Day, May 1st 2007











Friday, April 06, 2007

Good Friday but for who?

I have to say when I read Seth's blog last night I thought it was too late and Seth had gone no matter what.

I am glad he is still with us but it points out the fragility of it all. I have been feeling good over the past two days, never mind my worries about the possibility of motor neurone disease which will stay with me until I get my neuro appointment.

Well my position is that never mind how I feel, if my being here has made someone else happy, well then there has been a point to it.

Well background anxieties apart, life is improving for me. I am two thirds toward getting a PGCert and I did get my assignment in on time with all of it's seventy plus references assidously provided in Harvard format, (that has to be an academic record)

I feel more capable of addressing the future and the NAS has sold out of "whichever way" DVD's and re-ordered. (never mind having sold out in any other sense, cos I am still on their tail)

So the snail is on the thorn, God's in his heaven and Robert Browning had better be careful not to confuse a nuns habit with her anatomy :)

Therefore it is with great sadness that I learn that it is not the same way for Seth. I remember Seth from before I was even diagnosed and well before I met him, because I read about his troubles then on autistics.org. I have to say I have had my disagreements with Seth and he with me resulting in strong words being exchanged. All in all though I would rather he felt as I do in some of sort of resigned contentment with the world for all it does to you.

It might be me again next week who knows, but I want to celebrate the moment for me.

Above all I want to celebrate that this good Friday was bought for me by the suffering of our LORD on the cross. Whether you have any kind of faith or not, always consider when you are well that your good fortune may well be bought at someone else's cost.

Tuesday, March 27, 2007

Laurentius Rex is unwell

Though not quite in the Geoffrey Barnard sense though he wished he were.

For he has not been alltogether well for some time, though a lot of that is down to stress.

However now, and since returning from the Birmingham Autism study weekend it seems he has brought back more than he bargained for and is labouring under the mother of all sore throats, convinced as he has never been convinced, since the last time he were so belaboured (and not at all conservative about it) that he is not long for this world. Not that he thought he were that long for it before and now is even less long, clocks going forward notwithstanding.

So there you have it, he is idling away and in a way at least, (or not so long) enforced into restation for restitutions sake. (forced to rest as lesser mortals and those who are not George Dubya would have it)

So that is why I have not blogged or blagged and so have sagged, the sagacity and sargassoty thereof hereunto subscribed.

In other words, practically everything will have to wait until I throw this off, then perhaps I can go back to being even less long for this world, the interval having passed away as surely as a ship of fools in the night and fog of dreary existence.

Friday, March 16, 2007

Update

First of all which is untypical for me, I need to thank all of you who have given me practical support through my current crisis

I feel the need to keep you all informed as to where I am at.

I am still bearing an enormous amount of stress which is fighting against my mind to shut down my body. Still waiting to see the shrink and in the meantime have required a referral back to the neurologist as certain symptoms that were not apparent on the last tests have worsened in the meantime. The fight with my GP's the length of time I have had to wait for appointments and then the length of time I have to wait for the hospital does not help. I am due to see the shrink in April sometime (date unknown) and the neurologist in May, in the meantime I will be having an operation at some unspecified time in April complicating matters.

Through all of that I owe to everybody to complete my current terms work at Uni, which I am getting on with now, and complete next terms to graduate at the end of this year.

I have to accept now, financially there is no next year to complete an MeD it cannot be done and I have to gracefully accept that for the time being I will leave with a PGCertspED

I have great hopes of going on to a PhD and right now in the midst of all my stresses I am discussing this with all and sundry even having some of my ideas critically challenged before I start.

My worry is that I might still fall foul of the no first degree tick box formality, which is why I need to get the support first so that whoever looks at this points out that I can be trusted to have the capability.

I have also for my sins started an adult teaching course, which is about as NT as you can get, and is stressing me with group work and work in pairs. It is like jumping through a hoop of fire for me, that it seems I have to go through these kinds of gauntlets to get the formal qualifications that then allow me do and design things in an autistic friendly way or to teach others why what I have been taught is not universal.

I hope I do not collapse before I get to my objectives and that in September I have a clearer road ahead of me than the one I see now tangled with briars.

I need to be superhuman to overcome the anxiety with no damage to me, but I am not. My voice is hoarse from yelling at the phone this morning trying to get through to the hospital which requires you to do things in a most autistic unfriendly way.

You see I have a mission, I have always had a mission which drives me. I believe I can, given the right tools, the right accesses take on the things that researchers mostly refuse because they are not easy, and don't get your name in academic lights in the same way that the more orthodox but essentially empty cognitive or genetic research gets you because it is still "sexy"

I want my research to do something for Autism, to alter the way it is thought about in the professions who have to deal with it.

Above as an autistic it is my duty to do that, to show that we are central to this whole process. The processes of science and medicine which created us have turned us into the Frankenstein Monster who wants a piece of the action.

I just hope I can survive it all and don't end up fleeing from the peasants to end my life on a lonely iceberg.

Saturday, March 03, 2007

eli'asch 'tach't


What to write, what to right?

I have a plan so cunning I could stick a tail on it and call it a weasel.

I know what I have to do, and that is my course but apart from getting back on the academic rails, I have to make complaints about my GP surgery and the entire system that writes one off when one reaches a certain age.

I don't really like complaining because it does not make it any easier for me, but when one has been forced into the corner and there is no where else to go, then you come out fighting even if you bear bruises of it.

It took from 2001 to 2007 to get my left arm operated on, from when my left hand first went AWOL to it being "fixed" and I still await the op on the other arm.

But then in 2004 my left foot started showing the same signs, and just because it was ok when I had the nerve function tests that decided for them that my hands needed sorting, is no reason to believe it is still alright now at the end of the GP's financial year when they want to budget for more tests.

What to do,? shoot oneself in the foot, then they'd have to fix it wouldn't they!!!? Well maybe complaining is the metaphorical equivalent of so doing but after that I wouldn't count on much support from any of my GP's.

Well do I really want to see my medical records? (the ones that have not vanished that is) That is what I am going to have to do, to get it sorted I suppose.

At least I have got my benefit back till 2012 unless I "recover" in the meantime, and you can bet between now and the reform of the benefits system they will have another go to push me off it. That's one less thing to fight.

Who knows though I might not need it if I become a millionaire media mogul in the meantime, or the next vice Chancellor or Birmingham University cos I tell you now after my GP him and his whole crew are the next to go.

I have a little list ..........

Thursday, March 01, 2007

Not out of the Woods yet

Todays lesson is taken from the book of Job 1 vs 10 - 11

Hast not thou made an hedge about him, and about his house,
and about all that he hath on every side? thou hast blessed
the work of his hands, and his substance is increased in the
land.
But put forth thine hand now, and touch all that he hath, and
he will curse thee to thy face.
For far from the beaten track in my autistic offroad I have taken the fork that leads to the thicket and so thickly embedded am I that there is no wood save only trees.


Hedged against the hordes of Hell
I would to well, not to tell.
To tear out my traitor tongue.

My hands I ought to mangle.
I should never wrangle
Behemoth
Nor tackle with the Leviathan of legislation
Source and tributory of tribulation.

Confabulation!

They twist my words to lies.
They lay down when it is not done
What I would really have for all
And not for I alone.

Behind my back, the attack
The talking, smirking

"What is wrong with him, that he should protest so loud."
"Hey you get offa my cloud"

With clouded judgements, muffled minds
Enfogged in self attachment
Never witness to the far sight of the unsightly
Rightly encumbered only in what they clothe themselves.
To hell if you are naked, freezing in there scorn
They would rather that you had never been born

Ignore us all, build up that wall,
I should never walk that tall
That my head is taken off above the parapet.



Well will I ever see my way through to the shining city on the hill?
If you want to help, follow the link and order your DVD's of "whichever way" off the NAS and give them to your librarie, otherwise there is no demand and it will never be repeated.

No-one wants a post modernist autist intertextual intellectual

Monday, February 19, 2007

The remains of the day.

Well I started off the day in hot blood I suppose not knowing what was next.

At the end of the day I have time to reflect and realise that I owe 1000 pounds and that is that, if I don’t pay I don’t graduate.

It all goes back to when mum died, in terms of risk taking. I have been faced with various risky strategies since then. The first was to become self employed. I drifted into that without a business plan or any firm idea of how I was going to do it, because I felt it was a now or never thing.

If I had planned it properly I would have ended up with much less and huge debts as the price of failure. The price of success if I had done it properly might have been much more rewarding so that I would be comfortable now.

But I gambled what I had and lost.

The next gamble was after I returned to education. Initially all I had wanted was some paper qualifications to make me a bit more attractive as an employee in the photographic or graphics industry but the discovery of new talents led me on.
Applying for the HND was a risk because when I started I had no way of funding it either. I got lucky this time, but I was not able to get that gold standard a full degree as by that time the funding for the course itself which had intended to round off the HND with an externally validated degree was not there let alone the funding for me to do that, so I stuck it out doing lower courses whilst I waited for that to happen.

The next risk was studying at Birmingham University for the CertHE in autistic spectrum disorders. It was a risk because I started that at the same time as I was finishing my HND something Birmingham initially was not prepared to do but relented when I convinced them I was capable. Although it was not as much money as the course is now, I ended up over the two years paying over 1000 GBP for the qualification which again was a risk.

My mistake was putting off my desire to get a full degree until this year, as I was ticking along with an A level and an AS level to keep me busy whilst the fees took an enormous hike.

The risk was last year to apply regardless of the fees as it was now or never at this point in my life.

I then had a variety of options to get a degree.

A three year conventional honours course, with 3 years of fees and full time study meaning I would not be able to claim income support.

Or a two year course building upon my existing qualification in ASD’s with two years of fees, but partly mitigated by a grant of 750 GBP and a 250 GBP book grant.

Now I have found a different option through a loop hole in the regulations whereby I have skipped the first degree entirely and gone straight to post grad, to qualify initially at the end of this year with a PGCert and after two years with a PGDip or full MEd.

This is my stumbling block because that necessitates paying back the 250 GBP book grant, and paying the 750 GBP that I am no longer entitled to, that is the upshot of what I have discovered today as a bolt from the blue, not realising that I would have to do either of those things when I made such an eloquent argument to study at the higher level, I believed I was and am proving capable of.

So at the end of the day, what is the cost benefit analysis of it all?
If I don’t pay up by June 1st I will not even graduate with a PGCert, and if I don’t do that, I still won’t have a first degree and nothing to recommend me for anything higher in the future. So I have to do it, and will end the year in debt, therefore I will not be able to afford to take out a loan to fund going on next year.

That is the loss. The benefit is that if I pay up and accept the debt (it might already be too late not to pay as I am legally liable) I will at least have a PGCert to my name.

That is after one year of study and if I had gone through the three year standard first degree option I would not get there for another four years.

If I had stuck with the two year BPhil option It would take me three years to get to the stage I will be at, which would have meant paying next years fees and paying the fees for a PGCert after that.

So at the end of the day if I keep going I get my PGCert at less cost than it would take me if I had to have studied for a first degree inbetween.

And what is the fourth option? The only option I think that does remain now is to go full out for a research PhD next year with funding. I could do a PhD in record time I know that, but I will probably have to wait on the funding before I do and hope I do not grow too old and addled in my brains in the meantime.

Oh and for your entertainment another video. By appointment to the NAS as it were.


One morning in the life of an advocate

I got up today hoping this would be like any other morning and I could settle down to some more reading (I have at last got hold of Grinkers book) and writing of a University Essay

As is usual I check my email and the autism alerts and it seems this one is breaking out all over the place at the moment.

Well I can't let it go, so this is what I do.

I phone one of the professors who commented in the report and leave my comments with his secretary. I email the NAS press office and phone them as soon as someone is in, and learn that they have already put out a response (bad news as I had not got any comment in first) however it was not picked up by the press since the main story broke over the weekend and they got all the quotes they wanted.

I phone the BBC and cannot access there newsdesk (they like to keep the public at arms length these days)

And finally before so much as shaving or cleaning my teeth and still in my dressing gown I formulate and send email response to the journal Nature Genetics citing Gernsbacher's recent piece in the APA observer (face of the moment it seems), which I copy to all and sundry including the BBC and the NAS, making sure in the meantime the rest of the NAS Council knows what I am up to via there mailing list.

Is it worth it ?

Oh well if we are to be eliminated by targeted gene therapy I might as well forestall them like the chap in this fictional video, it would keep John Best happy at least.

Now I have some "real" work to do

Monday, February 12, 2007

A little light relief

To be honest I am sick to death of the Autism Hub

Well to be honest I am sick to death of just about everything lately.

Here is a little light relief recorded on my digital camera tonight, not the best recording quality, but here is my "kitchen" yamaha junk shop flute, and my 200 year old Richard Potter flute for comparison.



And here I am in the woods enjoying myself in a time very different from this one.



So leave me alone world all I want to do is to be.

Friday, February 09, 2007

Autist Flautist



Well I have been promising this for some time.

Here the ageing hippy makes an exhibition of himself and waggles his toes at all and sundry.

The band in the background is Steam Radio

I have not seen this controversial footage of Amanda playing that John Best seems to be getting his knickers in a twist about so I have the proverbial no comment to make on that.

So here I am, as I was last summer. I wish it were summer now

The link for those with dodgy browsers http://www.youtube.com/watch?v=jJh0sh1w9qA

Tuesday, February 06, 2007

Help, Blogger problems

My big problem started when I was forced to migrate to the new e blogger and create a google account, something I did not want to do because of what I have read of others having difficulties.

To begin with it posted an error message saying it could not migrate me over to new blogger, so I guess I am in limbo at the moment, signing in with my unwanted google account presumably to continue on the old blogger.

However that is not the worst of it, I am filling this in, with IE6 right now, because ever since I created a google account, firefox loops the sign in page.

Been having problems with firefox and blogs that require that silly word verification as it either does not show up or if it does I can't write my comment anyway.

Having similar problems with Opera.

So is this a google microsoft conspiracy to force us back onto IE because the java (or is it java script) won't work with e blogger, and why do they not warn us about it.

Mores to the point, this is a chronic problem not just with e blogger in firefox as a lot of other sites fail too, so this time it is Mozillas fault, isn't it about time we had an update that works properly?

I recently upgraded to IE7, big mistake, had to uninstall it, it is the worst browser interface I have ever seen, never mind that it slowed my laptop back down to a 486 crawl in loading screens.

Advice gratefully recieved.

Saturday, February 03, 2007

And now for something completely different



My first venture into Youtube

I don't expect people to make sense of it, because it is me, and the sense is that which I experience, and if you experience the video, then you get just a little bit closer to me and my world.

So stuff your science and your ranting
Stuff your pious sycophanting

I don't care what you will say
I will go on in my way

And if that ain't what you like
I would tell you "on your bike"

This is what I've done for free
And it is not easy, see!!

This is actually part of a grand project that has been going on since 2001 when I started filming and editing it. A draft version was completed for my HND course for which I got distinction.

Another segment of the larger work, I showed at the NAS international conference in 2005 and amongst the audience was Temple Grandin, I expect she was as puzzled as you are :)

And for those who can't see this in blogger here is the youtube link http://www.youtube.com/watch?v=YO-VEXg2K0Q

Friday, January 26, 2007

Autism, it's not what you think, it's how you do.

In 1944 Gunnar Myrdal stated in "An American dilemma, The negro problem and modern democracy"

"A handful of social and biological scientists over the last fifty years have gradually forced informed people to give up some of the more blatant of our biological errors, but there can still be countless errors of the same sort that no living man can yet detect, because of the fog in which our type Western culture envelops us. Cultural influences have set up the assumptions about the mind, the body and the universe with which we begin; pose the questions we ask; influence the facts we seek; determine the interpretation we give these facts and direct our action to these interpretations and conclusions."


I borrow this freely from Stephen Jay Gould though it is set down elsewhere, for Gould sets out in the mismeasure of man examples of how the contemporary notions of racial stereotypes and superiority directly influenced the science of the day, and from that perspective the notions of the Creationists and the Darwinists were completely in agreement. Science produced “facts” that Women and Black races had smaller brains, and more ape like features.

The statistics of such renowned scientists as Broca "proved" it, so did the observations of such medical taxonomists as John Langdon Down, and even Darwin himself was in on the act.

Gould shows how easily data is misinterpreted by prior bias, and re-interpreted to when it suits to produce the opposite argument when suddenly refuted, that being the tenacity of a scientist toward their original notion, that the will find ever more complex perversions to explain what ought in scientific terms to be a sinking ship.

Bruno Latour a philosopher and sociologist as well as a historian of science gives many examples of the way in which facts are in reality nothing but a consensus produced by complex processes of human endeavour that have little to do with pure empiricism.

Thomas Kuhn gives us the notion of paradigm shift, and if we want to see all of this sociology in practice we can observe the ding dongs of the pro and anti mercury theorists each of whom miss the practical and most important part of autism.

Never mind the bollox we are here and what is to be done? Many a good omelette is made by first breaking eggs and I would like to break the egg heads on both sides who divert themselves with arguments that have no place beyond establishing how many angels can dance on the head of a pin.

Autism is firmly located as a Sociological phenomenon within a wider discourse of disability and the very science that purports to define and reify this phenomenon is flawed because it is predicated not upon what is practical but upon the notions of autism being an affront to parenthood and the American way of life, from Kanner onwards through the perversions of both Bettelheim and Rimland in turn.

In others eyes it is more Bob the Builder “can we fix it, yes we can” than Thomas the Tank Engine. Thomas runs on rails, but that is not all that determines the course that Thomas takes, it is a complex interplay of engineering, signalling and the social function of the railways that is reified in Awdry's parables.

I would like to refer to the pragmatics of establishing autism as just part of the human condition that has to be accommodated for in the same way as dyslexia, and the other neuro diversities.

Nobody these days would contend that dyslexia can be cured by chelation or neuroleptics.

No the mainstream realises it is a developmental condition that can be ameliorated to the extent with which each individual has the innate capacity, and that perhaps different educational styles are necessary to come to terms with this very post literate phenomenon.

I have been saying the why and wherefores by which we have come to label autism in the latter half of the twentieth century and how it could not have happened before that because of the dubious cultural “advances” in society and the creation of disorders tied closely into the historical development of medicine and pedagogy. It seems that you don’t just have to take it from me any longer as Majia Nadesan has published much the same notions ahead of my conclusions.

Touché