Ethics and Confidentiality and personal story in the third person

There is a conference presentation that has done the rounds, maybe is still doing it, where one of the slides contains a quotation from one of the "anonymous" participants in the research.

I have seen this three times now, and each time, there is a certain tension in that the presenter has indicated that the author of that comment may well be in the audience. Indeed the author of that comment has a certain linguistic style that makes it somewhat unlikely that anyone else would have expressed the same sentiment in that particular way. I don't think the author really worries about that, but he (and it is a he, since the "anonymous" does possess a pair of bollox last time I looked) does consider every time just how confidential research can be private parts notwithstanding.

The participant in question has recently been getting accustomed to writing of himself in the third person, as this is apparently proper academic procedure, but at times he does also think bollox to that and all because his research cannot possibly have originated in a situation other than the one he finds himself in, and if you follow the link to this particular authors other blog you will see the connection there.

Sometimes anonymity is not the best thing, because the personal is political (I forget who said that, nobody is perfect) and in writing up my research it is personal.

However elsewhere on the internet the researcher can be found as participant, and not as anonymous to those who know his various internet moniker, as he ought to be.

 Indeed for those who know where to look there is a complete medical history of a particular neurological syndrome including private emails.

Anyway this researcher would not actually be engaged in this endeavour at all had he been more satisfied with his experiences as a volunteer participant generally for he has figured in more than a couple of Cambridge's more well known studies, and so plays his own little part in the construction of that particular perspective on autism whether he approves of it or not. Damn it he is even using some of that research to partially ground parts of his own study. Well that is intertextuality for you.

He has helped at least one person to their doctorate and has a good feeling about that where he has been interested in the research at more than just a casual level of a trip to Cambridge and all expenses inadequately paid. The best of research has involved a couple of drinks in the pub afterwards, I am afraid that doesn't happen at Cambridge to my knowlege. I doubt it often does at Birmingham either

Well if people think (and my legal watchdogs) I am having yet another dig at Saint Simon, well perhaps I am, but not to worry if you are reading this me old pal me old beauty, I'll see you on Monday :)

And before I sign off, my emergent research is going to be interesting because it already has something not often seen in the genre, and that is a critical faculty since I will rubbish my own methods and failings in more ways than the more acquiescent reviewer is likely too, but that is the way to go isn't it?

Anonymity? Well if you are a participant reading this, unless you out yourself in the comments box, I remain true to the proper conventions, however if I ever do ever  quote you in a presentation I will ask if you would like a proper academic citation first :)

An irritating and expensive day.

Ever have one of those days?

Got up ridiculously early to drive 80 miles to a meeting that isn't until next week !

Never mind that the clutch is playing up so I am not sure I will be able to risk driving that far again next week for the proper date without getting it seen to first, which could be horrendously expensive, considering this month I have to pay my car tax too, and I was overdrawn again last month.

Not only that to contend with, I lost my keys when I got home  and found myself driving 20 miles back to a layby where I last remember having them. It worked though, I hadn't left my keys at the layby, thank goodness, because if they had fallen out of a pocket there, someone else would probably have them by now as there were a lot of cars in the layby when I stopped, but at least being in a different place and somewhat calmer prompted me to check something in the car I had not done before. I moved the back seat, to discover they had fallen behind.

Is it because I is autistic? No it's just rotten luck and concentrating too much on some details to the point of missing important ones out. If I had not been so fixated about making sure I had everything ready for the meeting to make an early start in order to beat the traffic, I would have maybe had time to check the date just to be sure. If I had not been in such a tiz when my keys did not materialise from my pocket at home, and had been a bit more methodical rather than turning out my pockets and bags twice over, looking on the grass outside etc etc, I would have remembered something simple like moving the seats in the car.

As for the clutch, well I guess that was inevitable, it's only the long journey's that show up things like that.

Oh well at least it was pleasant weather and I took the scenic route home.

All ship shape and Bristol Fashion

I awoke this morning in the midst of a very strange dream, I am sure it will give the old fashioned analysts a field day, and some of my less sympathetic readers too, but so what, I am going to show and tell.

To begin with I was on the regular 33 bus travelling toward my old college at this current time, and on the way I encountered a number of people who were students with me, on the way to enrol for a further year. They each asked me if I was doing the same. "No" I said, "I am going to join the Navy"

Now if that is not bizarre enough, in the context of the dream I was about to do just that and more, in fact I was about to join the Navy and take immediate command as the Captain of a brand new aircraft carrier.

Now if you follow the link to this blog you will realise that Aircraft Carriers have been in the news lately. Apparently it would cost more to cancel the contract than to build one and mothball it.

Well to continue with the dream theme, I was supposed to report to an airbase to the north of Coventry (no such actually exists) where I would be flown out to take charge of my new ship, and I had got so far as presenting my identity at this fictional airfield, which in my dream more resembled a railway station when the alarm went.

Of course a little over an hour later as it turned I was indeed at a railway station adjacent to an international airport, not waiting for a plane, but a train to London for an NAS Council meeting.

I can't bore you with the details of the meeting, but the outcome of it was, that I was back on the board. Yo ho ho and a bottle of Rum.

I may not be the Captain of the ship, but we are sailing into to stormy waters I think, faced like every organisation and every individual alike with the Government's desire to pull the plug on big spending.

Now the question is, having got back on board me hearties, will I stage a mutiny and make Cap'n Colin walk the plank?

Only in my dreams :) I've got to hand it to Cap'n Colin, he was actually one of my sponsors for election never mind having thrown down the gauntlet on the odd occasion.

In some ways the NAS is a bit like an aircraft carrier, it is huge, too vast to know every knook and cranny on board ship, and difficult to steer as it takes a huge amount of space to turn in, but inspite of that I am glad to be back in there with a chance to influence the direction again. It's a very considerable responsibility not to be taken lightly at all.

Catching up

I can now reveal that the mysterious endeavour of my last blog was not successful, yep I failed. In what you might ask? Well that would be telling, and I am not inclined to share all my failures, they would be too many.

So what has happened in my rather unusual life recently?

Well I am nursing a swollen ankle again, having injured it on the last day of Autscape after an evening's stargazing at the Perseids I was told by the Dr to rest it. Well I got impatient after a week and took it up Snowdon, no wonder it has returned to plague me now, as I don't suppose a week was really enough to let it heal. As for my two big toes, you do not want to see them, under the nails they are black.

So today my ethics poster has had its final (?) outing at one of the Festival of Science events at Birmingham in what was optimistically described as a showcase for the very best of postgraduate research at Birmingham.

Well that leads me on to the week prior to this where I ended up dashing down the motorway from Lancaster to Cambridge to experience culture shock in more ways than one.

I was presenting my ethics paper, the one that is complemented by the poster to the Disability Studies Association biennial conference. That to me is now a comfortable place to be presenting in that my paper was a well received as other recent presentations were, but I do feel there however that I am preaching to the converted and that is not where my mission lies.

At Cambridge on the other hand I was not amongst what I would regard as allies, and I have to say I found a lot of the presentations there very hard to stomach.

I'm not naming names but there was guy there, part of the main event who trumps me for academic arrogance anyday, who was asserting that he might have the equivalent of the grand unification theory for autism.

Alas it was very apparent that he did not, all that he had was to put it into the popular jigsaw analogy, was an unfortunate and embarrasing delusion that the picture he had completed resembled in any way the one on the box, since it was readily apparent to anyone with a bit of critical nous that far from being a complete 1000 piece puzzle, what he had before him was a set of pieces which included a large number from a completely different puzzle and consequently missing a lot of the genuine pieces, in that he was putting together a theory which excluded a lot of recent developments and included a lot that has been increasingly losing ground.

Could he be told that? No of course not, he was an established academic, they cannot be corrected. In contrast I have to say I was more impressed by more recent and sceptical researchers who have yet to be convinced of their own invincibility.

There were some good posters, some bad, and some plain ugly. It was ironic that another delegate had elected to put a poster beneath mine which was the very epitome of what mine was warning against. That is to say it was the poster from a company (Gawd only knows what they were doing there?) whose claim is to be putting genetic research into practice...  Aaaaaargh.

Which is as good a point to go back again to the disability conference where one of the keynote speakers was a disabled film maker Liz Crow which Godwins law notwithstanding was a timely reminder that the same rhetoric that led to disabled people being the first in the gas chambers is abroad today, with talk of the cost to the economy and of lives not worth living.



 Well shiny shiny boots of leather and all, you can protest I am one of the shiny academic glitterati, but there is a consistent theme in all this, and swollen ankles apart, there is a cost to what I do, I seem to be shuttling up and down the country a lot recently and it goes on, I am back down in London next week for the first meeting of a new group comprising of academics and activists that is addressing the ethics and outcomes of autism research.

If you want to hear what I, and others had to say at the day conference at the UCL which seems like months ago now, but was part of my hectic summer activities, it's all online here.

http://www.ucl.ac.uk/cpjh/autism.

Well at least kept my clothes on for that one :)

Domine ad adjuvandum

Well whatever.

I am about to endeavour on something which I am not really inclined to tell anyone what it is. If it is successful then I have no doubt you will get to hear about it (and in some cases be truly apalled and afraid no doubt), but if I do not succeed (and I do not expect I will) then it will be like most of my endeavours merely "mingiare ad ventum" as the saying is in Eeyore land.

Mind you even to make the first step I have been procrastinating these days past as I have had other administrative nonsense equally mingiatoral ad venti windmills notwithstanding (which they tend to do)

I figure that I need to be intensively wrapping up and writing my research in case the curtains fall prematurely, in order to give myself at least a fighting chance.

My mum had a wierd expression in times of financial hardship suggesting that one had to pull ones horn's in. I have no idea where that expression comes from but it means apparently the same as tightening ones belt.

That is to say unless I can get people to actually pay me to do half of the stuff I have been doing over these past few years on the academic roller coaster ride.

I have a word for all of those researchers who ride on our backs to keep themselves in a living and it is not a polite one. You use us up and spit us out, but where are you when our backs are against the wall?

Oh well only time will tell.

Time will tell what is to come
Only if we dwell on what will be told.
What will occur as we grow old
Weary of waiting, anticipating another age
When all will be well, well only time will tell

To scan or not to scan, that is the question

New brain scan to diagnose autism

By Jane Hughes Health correspondent, BBC News

This is the story that broke whilst I was off away being Autistic (with a capital A) in the temporary UK capital of Autism at Autscape this year, enjoying an autistic paradigm (no that is not a malapropism)

Whilst others have beat me to the blog my response will be measured and will have to wait until I am back from my continuing vacation.

One thing I hope is that it will be presented at the Cambridge conference where I am due to put my own groundbreaking (in terms of the acceptance of a paper critical of science) poster up to challenge the usual suspects' concepts of ethics.

I have already contacted Declan Murphy with so many questions to ask. Until they have been answered you will have to wait for my opinion.

In the meantime you will have to seek out those posts I have made on Left Brain/Right Brain and the New Republic to get the gist of where I am going with this.

The train it won't stop going no way to slow down

In the shuffling madness that is Birmingham New Street station, I got on the wrong train today. It would not have been so bad if it had just been the wrong train going in the opposite direction as I would have got off at the next stop and hoped nobody checked my ticket on the way back. However I got on a train totally devoid of passengers going to no station at all.

I suppose it was all too good to be true, I heard the announcement for my train, platform 6a, and got on at the bottom of the steps. The carriage seemed very peaceful and I stuck my head into a book. By the time I noticed the train pulling out of the station I realised something was up, it was going in the wrong direction, not only that the train was totally devoid of passengers, I had got on a train that had made it's last run for the day and was on it's way to the depot.

Now in something of a panic, I avoided the temptation to pull the handle, (penalty for inappropriate use etc.) and instead made my way up the train - well it's better than crawling down the corridor on my hands and knees, that was in the days of steam :) - I dare say the driver got a bit of a shock when someone started banging on his door, a bit like that old Hancock test pilot sketch with Kenneth Williams outside of the aeroplane.

Well I had to wait for the  to pull into the depot and then follow him down to the other end and climb out of the other cab, as there are no platforms at the depot. Fortunately I was able to travel with him in a taxi back to New Street.

What had happened was that the train I wanted was further down the platform, and I had mistakenly assumed the carriage I got on was connected to that.

Oh well at least I wasn't dragged off kicking and screaming like this guy:-

Nothing to do with autism

Yesterday I returned from a conference, which took place in the rather scenic building you see here.

It's the first conference for a while where I wasn't presenting, and the first conference that has had nothing to do with either autism, disability or education so it made a refreshing change.

In fact it was a conference on research ethics in the generality, my interest in attending being informed by my increasing concern over the ethics of autism research in particular, as has been reflected here and elsewhere.

It was certainly worthwhile for me to attend for a variety of reasons concerned with my academic development, career and of course campaigning effectiveness.

Firstly and foremostly I was there to learn, to learn more about what the current discourses in ethics are, from the various philosophical, practical, legal and medical perspectives and to understand them in the context of "doing ethics" that is to say the usual procedure that any research student has to go through in order to gain approval for their particular enquiry.

Secondly it was an opportunity to step back from my current fields (although of course there are the obvious overlaps) and realise here is a new and exciting area for me to take an interest in with a variety of opportunities presented in terms of both future involvement or possible research.

And finally an opportunity to realise that I do not have to remain a "one trick pony" in terms of how I can ultimately progress beyond my doctorate, which having provided me with the tools for academic enquiry and discourse does not necessarily have to progress in the direction of autism. I have much more potentially to offer than that, and indeed given the current climate in the higher education sector I do need to consider as many alternatives as possible when looking for what follows as I certainly cannot ensure getting a post involved in education and autism specifically.

Not that I leave my autism behind particularly, because it is always there for those who have the ability to recognise what they see, and some of them certainly did see it.

The session in the pub afterwards was as instructive as any of the formal sessions (as these sessions usually are) but had to be tempered with a certain amount of curiosity about me. For instance: the following progression of beer fuelled questioning: - "I hope you don't mind me asking but ......  I hope you don't mind me asking an awkward question but .... I hope you don't mind me asking another awkward question but ..." Me: - "no I don't mind because you are obviously going to ask it anyway"

Or elsewhere the inevitable social enquiry as to what one is studying and why one is interested in it, where although it is not my intention to overtly "out" my diagnosis it does emerge as my reason and motivation for having an academic interest in autism to be followed with the sometimes inevitable comment "
"You must be very high functioning then, because you are nothing like x's autistic child I know"

Oh woe is me, out comes a long line of explanation, and the unstated response "Of course I am not like the child you know, you are obviously a very high functioning neurotypical to be at University because you are not like y's neurotypical child I know"

Children and adults, never the same the thing so why the comparison... Ho hum, that I suppose is one thing I will never escape even if I do escape into an alternate academic engagement.

Well I am Larry Arnold, I am autistic (with a better knowledge of what that means than the armchair diagnostician, or the person who has only seen one autistic person)
I am not Temple Grandin, or the rain man, or even Shakespeare's stereotypical infant "mewling and puking in the nurses arms" Have you got that yet?


My success is nothing to do with Autism, it's what I do, and if I didn't would it matter to you ?

Abandoned Cars

I scanned Autismo this morning with a sense of despair. There they are the "usual suspects" going about their business as if there were no progress in the world. Blindly adhering by faith and obstinacy to their pet theories as if they made any difference to the world outside.

"ABA good, anything else bad" as if all one needed for life is one pair of trousers one never outgrew and that ever fitted one, suitable to be worn for weddings, funerals, a saturday night out and mucking out the stables.

"Poor Bugger me, the postman did not call today, nor I did not win the lottery because I have the autism pox" As if there were never any other external factors in ones misfortune and that by wallowing in it one could change it.

And so on and so on.

I think these bloggers are like abandoned cars on the highway in various states of destruction. Long ago ceased to be of use and therefore not going anywhere, just steadily reverted back into the landscape. Landmarks of despair not any hope of a destination.

Don't even bother to comment if you see yourself implicated there, I am not inflating your tyres so your wreck stands any prouder, get yourself a new motor and get back on the highway.

As for me, I have plenty to whine about, always have, I mean we all have now in terms of the coelition government cutting right left and centre, we are all victims there, forced to fight like dogs for the spoils.

If I can get it together for my University fees next year, everything else is on track, so as long as I can gas up my academic motor, it still stands a chance of making to the destination without being abandoned on the highway of despair.

Same goes for my real life motor, which is visiting Kwik Fit today. So long as I can afford the diesel it will be taking me to Wales next month. "In the mountains, there you feel free."

The Lions Den, or to Cambridge then I came.

I don't suppose too many people had an interest in my cryptic last blog, for those who are still curious, it was from the Norse Eddas, Havamal, to be precise.

Well we don't know our fate, and I don't know if we even make it or not, it is la Machine Infernale, as Cocteau put it in his famous play.

But my topic for today is neither the Greek nor the Norse classics, without a passing knowledge of which I do not consider anyone who calls themselves a scientist to have a proper education at all :) No, even physicist Robert Oppenheimer was predisposed to resort to the Baghavad Gita in describing the awe (if that is the appropriate word) that the real world  demonstration of his theorems gave him.

It's an appropriate place to start, he wrote to his brother

"I believe that through discipline, though not through discipline alone, we can achieve serenity, and a certain small but precious measure of the freedom from the accidents of incarnation, and charity, and that detachment which preserves the world which it renounces. "

I can't be sure that either he, nor his brother, nor anyone else has any more clue what he is on about there, than they are about my equally obscure allusions to the Norse equivalent of Karma, in my last post "Ragnarok" but there is no mistaking the application of these words from the Baghavad Gita, describing Vishnu's destiny, as beheld in the mushroom cloud over Hiroshima and Nagasaki :

"I am become Death, the destroyer of worlds"

 It is perhaps the ultimate statement about responsibility in science.

And so I am pleased to announce that my abstract for a poster at the third  Autism Neuroscience Conference at Cambridge has been accepted. This one alludes not to the destruction of worlds, so much as the worlds apart of the un lettered scientist and the scientifically illiterate humanist. Not so in Erasmus'
 time, or even Darwin's.


I am pleased that it has been accepted because at last the little cul de sac of autism neuroscience is recognising a moral dimension to what they research and hope to achieve. Something that recent Imfar conferences have failed to recognise, and I have come on some way since my abstract for a paper at Imfar was rejected. Persistence pays off, but only if there is a truth in that persistence that cannot be denied forever as being irrelevant.

Whatever my destiny is, and whatever the old gods of Olympus and Asgard would have in store for me in these forthcoming "interesting" economic times I hope I shall live through their twilight into a new Renaissance, where the sciences and arts and humanities are not mutually unintelligible to their respective acolytes.

Ragnarok

 
Veit ec at ec hecc vindga meiði
netr allar nío,
geiri vndaþr oc gefinn Oðni,
sialfr sialfom mer,
a þeim meiþi, er mangi veit, hvers hann af rótom renn. 

Við hleifi mic seldo ne viþ hornigi,
nysta ec niþr,
nam ec vp rvnar,
opandi nam,
fell ec aptr þaðan.

David Cameron (if that is your real name) and Ian Duncan Smith, do you think you can resist your destiny, your doom?

You are numbered!

The academic grind

My key note presentation at the Normalcy conference last week, went down a storm, the material I quoted from fellow blogger Chaotic Idealism was particularly well received. It was certainly the best presentation I have done so far and I don't think, for a variety of reasons, that it will be forgotten in a hurry.

But that is not the end of it. I have just about completed my poster on Ethics for the Birmingham Post Grad Poster conference and I have a couple of 'gigs' after that, starting with my appearance alongside Laurent Mottron and Dinah Murray at the UCL followed in July by a presentation for the Education School conference .  The theme of my next three outings is ethical research again.

That's enough to keep me busy into the summer anyway. I know my enemies will be hating this, but what the heck, this is what I do these days, I wouldn't be doing it if I had nothing to say that people were not willing to listen to. The University's motto is Per Ardua ad Alta, which means in English by hard work (or adversity) to the heights, and it is hard work as well, I didn't get here by accident.

My detractors ought to take notice, that it is not my "super shiny" aspieness that is getting me attention, it is the quality of what I say and my attention to detail in it all.

The can of worms

For Martin Luther it was the diet of worms, for me it seems a can of worms, I'm not going to eat them :-

It seems I still have not made myself clear enough. Over the past few days and if you look at Square 8 and LBRB you can see more discussion, hub bloggers have been indulging in even more navel gazing and recriminations, old wounds have been opened, disputes going back almost a decade, re unearthed.

This is not about who is or is not a "fake" autistic. I want to knock on the head the assertion that was made by a former prominent autistic speaker, that people like me should tote their diagnostic papers to conference organisers before being allowed a platform. I have said, that it would be an extraordinary requirement, and one unprecedented in the world of disability organisations in general. To begin with distinguished academics are accepted without having to hold their degrees and diplomas aloft. Parents do not have to put their children's birth certificates on display. Not only that it would certainly be illegal in the UK to treat one section of the community, a disabled one less favourably than the neurotypical, who ought in return to display a certificate that they have never even remotely been diagnosed with anything in the DSM. I'm guessing the same discrimination argument would hold elsewhere, it's a lawyers charter. It's the sort of idle speculation one can make in the public bar, along with other pledges to set the world to rights, but it does not belong in the real world, and it surprised me that any one with a respectable organisational and administrational pedigree (in the ASA) could ever make that suggestion. There is no discussion on this issue, don't bother to post to my blog about it. The issue is closed.

Of course for anyone to masquerade as something they are not is Fraud. This is an issue covered by Kathleen Seidell with respect to the qualifications of AoA's favourite scientists elsewhere,. It's something I probably cannot repeat directly on my blog, I don't have the protection of the first amendment. I am not really at liberty to play the popular parlour game of naming suspect celebrities either, those who have not already been open about their diagnosis, as given the current stigma that still surrounds "autistic spectrum disorder" a stigma I might say that is encouraged by the likes of Autism Speaks in the USA, to name any individual, even Bill Gates as Temple Grandin frequently does, could technically be considered defamation in the British courts.

Of course it is unlikely that Mr Gates would sue every individual who has ever perpetuated what is in effect nowadays an urban legend, however it does remain as impolite, and inaccurate to speculate about any living person's diagnosis, especially without the background details.

I wish I did not have to preface my post with all that, but there are matters that won't lie down. Especially regarding functioning level, which I covered in my last post. You might have thought that post was about Amanda Baggs. It was not, it was about my Mother.

I know what I have frequently been accused of on the internet, of being a "shiny aspie" that is to say one of the elite who is at University post grad level. And that is pursuing only one narrow section of interest. To repeat that assertion is a defamation as much as anything else. I do not think I would have been elected onto the board of the National Autistic Society on that basis at all. Neither is the National Autistic Society, as some have alleged, and organisation that only cares about one section of the autistic community. Far from it. The organisation is made up for the most part of parents still, and I would think it reasonable to assume that a poll of those parents would show that they are caring for offspring at every level on the autistic spectrum in the same proportion as such people exist in the general population. The NAS has pioneered care for people on what is sometimes called "the more complex end of the spectrum" and even on the hub there are parents whose children represent a variety of "ability"

I am not even going to use the word "severe" not because I dispute it, because experts do. When you only see what is closest to you, you don't see the whole picture. If I based my advocacy solely upon my own wants and desires, I would not be doing anyone a service least of all myself. Yet on AoA and elsewhere we constantly see parents whose only care (perhaps rightly so in the context of their lives) is only for their child, or children like their child. When that advocacy steps over the line and makes accusations at others and seeks to disenfranchise them either for advocating for their own proper rights, or those of others, that is no longer advocacy it is discrimination.

There is a post doing the rounds at the moment, regarding Amanda Baggs. I am sorry I still have to raise this topic. It says that she, at a much younger age than she is now, wished to advocate for the autistic children she worked with when she was hospitalised for schizophrenia . Is that a crime or something to be praised?

I have a friend, no doubt a shiny University aspie too now. (Though I knew her before then) who also works with autistic children. So did Claire Sainsbury author of "Martian in the Playground"

Mike Stanton, a parent of what many would call a "shiny aspie" is also a teacher of children with profound intellectual impairments. and so it goes on.

The difference with us and Harold Doherty for instance, is that do not draw a line above a notional IQ of 70, or a given level of functional speech and say, I don't care about the rest of you. We care about everybody.

And so did my mother, she was a leading light in a broad disability movement, that respected people with intellectual impairments and amonst the people she would assist, and who she worked with were parents of children with profound impairments every bit as "severe" as those portrayed in the negative focused videos that exist alongside ours on youtube.

Of course this ought to be an end of it, I fear it won't be. Feeding the Trolls is an exercise that never ends, the more you feed them, the hungrier they get.

I'll end on another poem entitled "the can of worms

The weary worms come out the can
Struggling in comprehension of
Who canned ‘em up
You, or I or some also ran
Canned up the worms
Can we then come to terms
With the lowly weary worms ?

A true story and a little lesson about functioning level.

Picture a women, who is so physically impaired that she cannot even get out of bed or sit up in it without assistance.
She cannot get dressed without assistance or use the toilet. When she does her number 2's somebody has to wipe her bottom for her.
She cannot cut up her food, and sometimes can't even even lift it off her plate to her mouth.
Her hands don't look like hands ought to any more, they are twisted and distorted, she can't even type, but has to use a machine that chooses the letters one at a time and painfully labours them into words and sentences.
Indeed she needs attention 24 hours of the day.

What kind of functioning level do you call that?

You, don't of course. Functioning levels are a discourse of intellectual impairments not physical ones, created out of older distinctions, wrapped up in Greek words to look respectable, words like "imbecile" "moron" "idiot" -- "low grades" and "high grades" the categories of the institutions used to sort out who could do useful work in the laundry and who could not.

The categories are not ones we use now, far too "politically incorrect"  even when rationalised by a later generation (in the UK at least) to educationally sub normal, mild and severe - or what they are in autism, remind me again lest I have forgotten "low and high functioning". Do those labels bear up in the real world?

The person I started this post with did not die in an institution though. When she died the civic business of a City stopped, as Council chiefs, Hospital administrators, MP's, Trade Unionists and Disability advocates paid their respects at her funeral.

And did they turn out purely for pity, because a once functional body had been brought so low? No they did not, they turned out to pay tribute to an individual whose legacy is all around, in the form of ramps and electric doors, a women's health centre, buses and taxis you can take a wheelchair onto. Her epitaph on her tombstone "A champion who fought for others"

That woman, through pain and fatigue, immobility and constraint, was a tireless worker, for civil rights, for access and a host of other things beyond the world of disability.

She left another legacy though. A strange son, who she came to be dependent upon to do all those physical tasks for her. A son who could be an embarrassment though. An individual given to bizarre fits of rage, where he could punch through a solid door, break the furniture, even smash his computer screen.  How do you explain all that yelling to the neighbours? A carer, who could not keep quiet in meetings, who had embarrassing outbursts at public functions. An individual whose own brother would not accompany him to the shops in fear of the consequences as he loudly berated the shop for this or that. As the computer era dawned she bought him laptops, very expensive and rare at the time, portable tape recorders to aid his difficulty with the written word.

What was his functioning level in the community? Clearly in the orthodox social domain, very low, a liability, but when she died, he went back into further and on to higher education where he is pursuing his doctorate now. Intellectually very high functioning, yet still an embarrassment at public meetings.

It becomes not a matter of how you define function, or even if you define function, but why?

The mother could have been described as physically very low functioning, in terms of self care; low functioning, but in the civic and social spheres she was very high functioning indeed. When she was interviewed for a position of considerable responsibility, one of the interviewers said to her face, that he had not expected the candidate to be so obviously disabled as she was, sitting in that room in her electric wheelchair with the impedimenta of wrist and neck brace, and shapeless fingers. He said had he seen her first, he would not have believed her capable of all the things she had done on her CV.

The son? Well he became one of those "shiny aspies" didn't he? But then he nearly did not get that far. When his mother died, his structured and goal oriented life fell apart, he nearly took his own life because the strains of trying to direct it for himself were overwhelming. What physically he did for his mother, became hard intellectually for him to do for himself without that world of constant prompts and timetables. He still struggles with it.  This Sunday morning he sits and types away, he isn't dressed, he hasn't shaved or showered, and he certainly has not had, nor will have breakfast, he is running out of food and will need at least to get some clothes on and get down to the shops while they are still open to get something he can put in the microwave. But still he types ..........

It's not about functioning is it. It is about appearance, prejudice, jumping to conclusions. A functioning label that is built around whether someone is verbal, or non verbal, has a low IQ or is gifted, doesn't tell you a lot about the person at all. It tells you only about what someone else considers as important.

For the shiny aspie, it's not important to him right now that he eats, or gets dressed, he has something else on his mind.

My last post was about Amanda Baggs. There are some people who will have fallen out with me for even raising her name in the same sentence as "controversy". People who I have worked closely with even.

Well I've not entirely finished yet. The story I have posted is a true one, and it doesn't take too much guesswork for those in the know, to know who I am referring to.

During a time some people will have forgotten, there was the usual flurry of negativity coming from "Autism Speaks" there was an appalling video "autism every day" and not the only one, which focused on only one side of the picture of autism, much as one could focus if one wanted to only on one side of the life of the disabled woman I have instanced in my true story. You could focus on her pain, her frustration, her inability. But that was not the whole truth was it?

There was another piece doing the rounds, purporting to describe from the inside the life of a "low functioning" autistic boy. That wasn't truth, it was written by a so called "high functioning" motivational speaker, not even of the same gender. It was written for a reason, as a piece of propaganda I am sure.

Well somebody constructed a clever response to all that negativity. A serious of photographs, purporting to show one pitiable reality. Then the photographs were shown again with a different set of captions, showing another. That site was initially anonymous, The photographs did not even look like the photographs of a well known person who had a web site previously. You had to think about it to even suspect who it was.

Well it was Amanda Baggs, and the site was called "Getting the Truth Out". eventually the authorship of the site became common knowledge.

There was a danger though in that presentation, that the first set of pictures was as deep as anyone would go. Stark Black and White photographs, a parody of much classic charity poster advertising of the kind covered in David Hevey's seminal photo essay "creatures that time forgot"  People might believe that the object of the photo series was to invoke pity, the opposite of the intention. Well indeed that is all that some people did see, they constructed there own realities around that, and then there were the follow up videos when the authors identity was known. I foresaw that, and the gloss put on it all by CNN, it was out of control.

I made a video too, "whichever way you look at it, it's still autism" It also used pictures in an ironic way, it was all carefully crafted initially as a response to a "cure autism now" video, deconstructing the forced negativity of it, and concluding with the notion that different people see different things when they are talking about autism, they colour it with their own perspective no matter what. The parent sees the child differently to the child themself, and that is because they are both on different journey's at different ends of life, whether autism and disability is in the frame or not.

There will be no more comments on my last blog post. My answer to them all is here.

Stop trying to pigeon-hole people into functional categories - see the individual - realise their perspective on things is not necessarily yours.  Change is what life is about. coping with change is what can make it difficult. The mother I started out with was not always as physically incapable, her body regressed. The son was not always as "shiny" he progressed.

Motivations are what come from within, sometimes the author does not know what they are, but this much, you can be sure that if the author does not, no-one else does either.

The Amanda Baggs controversy

No links there, no pack drill.

I have been drilling down within this (what to outsiders is no doubt incomprehensible) controversy which has exploded on the autism hub.

There is, and has been for some time a lot of controversy over the veracity of Amanda Baggs.

Statement by Larry here. "I do not believe and never have that Amanda is low functioning"

Now the qualification for that statement ought not to be controversial because the definition of functional ability in autism is essentially a normalising dialogue, a socially constructed dialogue and when one withdraws ones "gaze" from autism and looks at notions of disability, impairment and difference altogether it is a nugatory or "piffling" dialogue.

I think I do need to come out here, and state what is, what I have said privately in other fora:

I first encountered Amanda in early 1999. You could say that was an exciting time as I was discovering a lot of things then with regard to this autism which I had been "framed" with.

I think the major condemnation I have seen against Amanda is a number of previous tentative diagnoses including (yes wait for it) the unmentionable Schizophrenia.

Well lets get real folks. Those who tend to condemn in all probability have never had any contact with mental health services, they do not know even what "diagnosis" means or what many psychiatric "survivors" will tell you, that you can see a psychiatrist who will diagnose you with x and a month later you can see another one who will rediagnose you with "y"

Yes it has happened to me too.

There is a lot of stuff out there, if you know where to look for it, that replicates what Amanda had to say prior to my first encounter with her.

But then look at it properly. I am not sure what I am going to say does a lot of favours to Amanda, but you have to look at age in this. I was a teen once, though looking at my grey hair and whiskers you would find it hard to believe.

I have had the good fortune to watch other autistic teens grow up and mature.

Anybody, think about it. If you ever kept a diary when you were sixteen, whether you would want to see that published now?!

Amanda, has made some big mistakes (as I see from my perspective)  I won't go into them all, I commented at the time, Amanda is aware of what I said. Heck it is no worse than what I have said to Michelle Dawson, or Ari Neeman particularly Ari Neeman over the same naivity with dealing with the media.

Media is one of my specialties, I would know about it. I have myself been accused of not speaking to the media, but I had good reason to distrust.

Some of the fallout amongst the erstwhile autism hub involves personalities. Lets not deny. It involves those who do or do not support Ari Neeman (the young pup who ought not to teach his elders how to such eggs) or Michelle Dawson (whose knowledge of the philosophy of science is distinctly lacking) or Amanda Baggs, who came out of California where those big trees grow, need I say more (ironically)

Beyond that there are all the "ace faces" out there who might turn out to be no more than bell hops - (this is a reference to the movie Quadrophenia BTW)

It's not about personalities, it is about diversity and the right to be.

Larry Arnold is the ultimate clown king in all this. I learnt (was forced) to take that role. Licensed folly. It's a precarious tight rope I can tell you.

There are no plastic saints or Icons in this autistic world, all of us are flawed and human. There is so much crap being exchanged right now, condemnations, accusations. When it comes down to it, it is not about the bigger picture, it is about selfish perspectives and self constructed holier than thou bullshit. Yes on every side.

Who has the guts to admit it though? When we all do, then we can move on......

Damned if you do, and damned if you don't

It will not fail to have reached many fellow bloggers notice, that yet another internecine war has broken out between hub and ex hub posters, never mind the long rumbling war between hubsters and the age of autism, and their associates.

Perhaps it has come time to call a halt on the hub and for each of us to go our separate ways, as the criticisms I made of the hub, when I was the subject of an internecine war still stand.  Indeed the existence of the hub does not seem so much to serve its stated purpose, as to provide a magnet for malcontents to characterise all whose blogs are associated there as one mind in group speak, when it is quite clear that the opposite is the case and that a variety of shades of opinion and involvement in any movement are covered there.

It has to my mind only encouraged the building of a straw man out of a rallying call of "neurodiversity" which like the term autism itself means different things to different people.

I for one am ashamed to associate with a notion of neurodiversity which is not inclusive and does not include all of the work that is being done outside of the limited coverage of the internet. The origins of the word, and it's various applications are badly misunderstood and sometimes deliberately so.

Fortunately those who use the word pejoratively are in the minority in that wider world beyond the narrow focus that leads one to think that ones blogging "cronies" are the whole world. It is an unfortunate illusion that any clique allows to foster.

I can well see why so many people opt for anonymity, and indeed I can see why so few (if any) respected academics in the field are seen to put their wellies on and enter into this mire.

I generally wish I had left it alone too, now.

Given a series of recent events that occurred before this latest war broke out, I think I shall have to add a standard disclaimer to all of my  posts from now on, showing that a comment on any particular blog is neither to be taken as condoning nor condemning what ever else is on the blog, and whatever else anyone has posted except where it is in direct reply to any specific point.

The insults have to stop, they do not contribute either to good order or good debate.

From now on bloggers who merely wish to fight proxy wars on my blog, using inflamatory language, will not be allowed. That's not censorship, that is common sense. Besides I have legal and professional obligations not to publish such comments.

But of course whatever I do, someone will damn me for it.

Not what you expect, but then it never is.

I think I may have almost missed the boat for this "blogging against disablism day"

For a start off it is ableism, cognate with racism, not disablism, whoever contorted the language to come up with that one?!

But having got that particular semantic horrorshow out of my system I will procede with a poem, not even a new one, it has a date which is it's title  - “Be not afraid” - 9th Oct. 1980

Yep you see impairment is not just for Beltane, it is for life :)

It's a poem about a different way of seeing, the way of the migraineur:


After an image, imagination, rash-null explanation.
Apparition, Shun the lot!
A walking-waking dream or not?
I saw out a window, twenty mile and more
Reduced to thirty yards or so!
Seen, scene from my fabled Film.
And wake to crooked consciousness,
An overbearing bent bathroom.
And where wallpaper was,
A super-fluidity of flowery-field
The green-grass glare, an insane painting pattern
Like an early episode among -
Galactic collection coloured red...
If satan had a hand in I'd be shocked
As if in recollection not so strange as it all seemed,
It was another vision,
Serenity returned a day.

Enemies Part II

The reading for today is "keep your friends close, but your enemies closer", which would explain why my blog is pointing towards Autism Speaks again today.

There has recently been some speculation on line that the Autismo hub much popularised by the New Republic is to be avoided, not to mention to be declared anathema, because it not only highlights the blogs of those who oppose our opinions, it rates our own blogs unequally in a way which the group think of the Autism hub would possibly never countenance. Oh well having been persona non grata on the mainstream hub what should I care? Indeed the alternative hub does make such a pronouncement, that the mysterious administrators do not care to have their decisions challenged so any attempt would be pointless.

This is by the by, because to return to the original theme "keep your friends close, but your enemies closer" I do like to read what the opposition are writing on their blogs, it is just as important to the debate as what we write, and if we only stuck to our own circle of blogs it would be like a mutual self appreciation society after all.  I do not need Socrates' sometimes dubious tracker to know who is reading my blog, amongst the readers are the usual suspects of Harold Doherty, John Best Jnr, and of course Jonathan Mitchell, whose comments turn up from time to time, so why shouldn't I be able to access a convenient hub that keeps me posted on their latest blogs too?

Anyway to define who my enemies are, would be appropriate perhaps, after having inferred that enemies rather like to take the roofs of cathedrals in my last blog, it might be better to be a bit more specific and say that I consider my enemies to be anyone who compasses harm to my being, or the being of people like me, which therefore most definitely puts the US organisation Autism Speaks into that category because to eradicate Autism is to eradicate me. That is why I do urge everyone to actually read their blog, it's not just relevant to the USA, having seen the organisation represented at all manner of events and conferences it is very pertinent for us to know just precisely what they do countenance, and if we get through the censorship of the comments section of that blog to put the countervailing argument.

Indeed what is democracy, if there is no debate, and it is all one sided, a dialogue of the powerful and wealthy only. We should speak to each other, whether we can always remain polite is another matter, I have learnt a rather bitter lesson recently that it probably does behove me to be a bit more polite than I have sometimes been.

Politeness does not however mean relinquishing strong opposition. Reasoned arguments from a political as well as scientific perspective are needed, because make no mistakes the battle is for representation. The very name "autism speaks" is a misnomer, for the organisation are not autism, we are and as the old slogan of the disability rights movement says, "nothing about us, without us" it is time to put our individual differences aside, as I have said before, in order to ensure that at least it is autistic voices who are doing the talking, even if they do not always meet with our wholehearted approval, it's better than the alternative.

Of course there is another saying, and I think the opposition know this well and put it to use. "The enemy of my enemy is my friend"  something that FDR and Churchill knew well, not that I would ever have wanted to get into bed with Uncle Joe Stalin, but that is another story. That being said one does see this principle played out to rather strange effect amongst our opposition to an extent that sometimes seems to defy all logic.

And before I leave, touching on matters controversial I would urge everybody to sign this on-line petition, since blogging can be hazardous in the UK without the 1st Amendment to protect us. It might be you one day, so lets get this law changed once and for all.  http://www.libelreform.org/

Enemies

Once in a while I become somewhat self indulgent in celebration of the eclectic mess of eccentricities that I am, in posting things that you can't google.

Maybe someone else will recall a performance by the 'divine' Sarah Bernhardt, where she and her compatriots were on stage representing 'les Cathedrales de France' and she was Rheims, this was after the first world war of course and somewhere in that was a poem containing these immortal lines "enemies shelled Rheims cathedral"

Okay I wasn't there but I nonetheless recall someone else's recollection of the event and I may have confabulated two memories in conflating the poem, but it does exist if someone can but find it. The title I expect would be "enemmis" anyway there was a communal drawing in of breath when the divine Sarah intoned during this performance "Je suis la Cathedrale de Reims" and if you click on the link, there it is the roofless Cathedral of Rheims, not quite as destroyed as the roofless Coventry Cathedral, but proof of enemy action nonetheless.

I saw a German movie once, it was called "field of fire" I think it was based on a story by Heinrich Boll, but I wouldn't be 100% sure but it covered the attitude of the advancing US army to blast anything that stood in the way of the field of fire.

Enemies shelled Rheims Cathedral, Enemies bombed Coventry Cathedral, but then they left the gas holder alone, they needed that to navigate, never mind it had been built by German Engineers.

Well these memories will be gone like those tears in the rain won't they, and what is the relevance of all of this besides this bizarre and prodigious memory of mine?

Well the theme could be La Bernhardt's disability, but it ain't. It could be the folly of war

Or maybe it is just a certain paranoia about *my* enemies.

I have not finished with them (whoever they are, or they think they might be)

In a way I do not matter in this, because what I have to say does not carry the authority merely of being told by me. No it carries an authority that no law or bogus science can contradict, because it carries the authority of what is true about autism and what is not.

And now if you google the phrase "enemies shelled Rheims Cathedral" you will have even less chance of finding Sarah Bernhardt, cos it will lead to this blog, such is the recursive world of Google.

The road less travelled

We all know them, there is a certain tribe amongst us neuro diverse people who speak of cure and curse what they might have been but for the 'demon' of autism that possesses them.

They tend to be resentful of others achievements and condemn there fellows at University as 'shiny aspies' as if we had a life in any wise different to theirs.

Well I shall play with that thought experiment of 'what if there had been a pill I could have taken as a child'. What might I be otherwise than I am now?

I can contemplate an alternative future, indeed the future I was supposed to have if my parents had had their vicarious ambitions fulfilled. I would gone to law school, trained as a solicitor and maybe become a partner in a firm. I would by now be a grandfather, with a doting wife (they are always doting for some reason) with two grown up children, equally successful in their chosen endeavours.

I would live in a comfortable home paid for by the profits of my other investments and I would be nothing like the Laurentius you see today. I would have lost most of my regional accent, I would dress soberly (for business) play golf and go to the opera. I might even belong to some important sounding society with letters after my name.

Then again it might not have turned out so sweet. I might, even this perfectly amenable and tame non autistic and somehow intellectually superior me, not have been able to escape the consequences of an alcoholic and abusive father. My wife may have packed up and leaved me. One of my children might have died from a childhood cancer and the other become a teenage tearaway in constant trouble with the law I was supposedly expert in.

I could by now be a bitter old man, liver ruined by drinking, health otherwise compromised by failing joints not helped by obesity from too many business lunches.  My name might not count for much in the world at all, for I could be the butt of all the office jokes because of that slight common hint in my accent, and my failure to be a ladies man, never mind my secretary was pursuing an industrial tribunal for sexual harassment.

I might have been eternally regretful that I had seen my mum die in a nursing home (I had paid for) essentially vegetating, because I was too distant and arrogant to really care. My dad would still have died early, boasting in the pub about his successful lawyer son, but regretting just as much that he had turned his back on his beginnings and shunned him.

In other words we simply do not know. Life is attended by so many forks in the road, and not many of them lead to that ideal of bliss in the world. That is to say other ghosts of my past, other things that occurred in generations before my Father and Mothers even.

It has been a rough week for me, as rough as could be wished on anybody, and for sure my autism has had a lot to do with it.

There is no point regretting the past, even the recent past because you can't change a thing. However even so my autism never stopped me engaging in the world of autism, much though some people may resent that it is not our business to be swimming in that pond. My autism has not stopped me belonging to an important sounding society, with letters after my name, because I have been a person of influence in the community, a force for good.

I do regret I am not a doting grandfather, some things you cannot recover, but that is the way it goes.

Anyway to continue the Reggae theme, here is some more, mark well the words.

Equal under God, we will not die because you want us to!

"Until the philosophy which hold one race
Superior and another inferior
Is finally and permanently discredited and abandoned
Everywhere is war, me say war"

Well I add this codicil, that until the philosophy that hold one person Superior and another inferior Is finally and permanently discredited and abandoned Everywhere is war.

I will not have it that there are those who seek our destruction and eradication because we do not match their images of perfection. Better for me that I had never been born than that I should face those who hate everything that makes me my kind of human. It might seem that way but that would be to shirk the responsibility that I have to live and to be my kind of human.

Some might accuse me of exaggerating the message or the threat. But no it is very real http://www.bionews.org.uk/page_52244.asp

Out of Leamington

Out of Leamington came Aleister Crowley but also this :-



And in case that is a bit dated this also : -



Yep you can't take that away from me, no you can't take that away from me. (F Sinatra)

Well see you there at the next Peace festival time coming, I will be there and my flute.

I've seen things....

"I don't know why he saved my life. Maybe in those last moments he loved life more than he ever had before. Not just his life - anybody's life; my life. All he'd wanted were the same answers the rest of us want. Where did I come from? Where am I going? How long have I got? All I could do was sit there and watch him die."

Well when faced with uncertain times there is a phrase that carries one through, and that is to live for the day, but what if or when the day does not justify living for? What then?

Unlike Roy Batty, I do not know the number of my days, but I sometimes count them short.

Whatever? Only I have control over the big E button, and when the time comes to press that, no amount of urging by others not to do it, will make any difference because my time will have come.

When all that is valuable in life to you seems threatened, the big E button starts flashing temptingly with it's "push me" signs, "you know you want to"

It's the shadow I walk with, the counterpart to burning brightly.

It's not that I do not feel, it is that I feel too much, the highs are highs, and the lows are abysmal.

Oh well - Time to make myself something to eat - well that is an improvement at least.

I'll tell you this much, whenever you make your life as public as this on the internet you can guarantee there will be as many urging you to push the button as not to. That is the way it is :)

I needed to say that.

Don't let us be thrown to the lions.

All I seem to read on a variety of blogs lately is a lot of controversy regarding ASAN.

Well I will remind everybody of what it says in the book of Daniel. Yes I know this is a rather fundementalist thing to be doing, but you see my religion does tend to give me that perspective of absolute right and wrong. Call it black and white thinking if you like but sometimes we really do need to realise what side we are on.

Mene, Tekel, Upharsin are the famous words written on the wall, and whichever interpretation you put upon it, it is usually considered to mean weighed in the balance and found wanting. These are the prophetic words given to Babylonian King Belshazzar before the Babylonian Empire was divided and given to the Medes and Persians.

Well divide and rule is an old concept that is for sure, and if we do not stand together on certain matters we will be picked off one by one. In fact I sense that happening already.

We do not want to be associated with Babylon. Babylon, stands literally for a historical empire in the book of Daniel, but in the book of Revelation it stands for evil generally, the evil of a corrupt regime, represented by Belshazzars Babylon. Click on the link for Babylon and you will see how our opponents consider us as weighed in the balance and wanting, how they consider us less than human.

If we allow all this dispute to stand in the way of Ari Neeman taking up his position on the US National Council for Disability, what does this really mean?

I fear that it means that those who are really stirring up dissent in the political circles that matter will get their way and secure an alternative who wants to see an end to our tribe one way or another. Can you end autism without ending autistic people?

Let us be sure when the walls of Babylon fall, that we are on the right side of them and are not crushed as collateral damage.

A little lesson in linguistics, or the people first shibboleth.

Chomsky notwithstanding (who talks of a technical reconstruction of syntax rather than a pedaogogical grammar ) The reality of  grammar in terms of "people first" language means less than the actual usage and it's connotations. That is to say the communicative intent and how it is understood in any particular community always takes precedence over any strict 'by the book' rule

I do not have sufficient knowledge of comparative linguistics to really analyse the way things can be said in languages that don't permit the same grammatical forms and alternatives as English. The very flexibility of English as a polyglot language encompassing more one grammar and vocabulary is partially what allows these distinctions, though the distinctions would still exist independently of language, only un-named and categorised, the fact that something is either named (or described) or not being in itself indicative of the social status of such a difference being expressed in the alternative forms

Anyway consider this description

"I am a convict."

That sounds pejorative -  I am someone who has been caught committing a crime and have been sentenced.

However, as any thesaurus will tell you, conviction bears alternative meanings. Consider further for example

"I am a person with conviction"  or "I am a person with convictions"

Very similar phrases we the second being merely a plural of the first. However but the context and conventional usage makes other distinctions. For instance the connotations of the first are fairly unambiguous that I am a person who 'is convicted, or convinced, a person who holds deeply entrenched beliefs  the most common instance being religious convictions. On the other hand the second phrase does not so readily (although it can) add a plural to, introduces an ambiguity that implies I am more likely to be a person who has been through the courts than a person who has more than one set of strongly held beliefs.

I can use a similar phrase using a similar word.

"I am a conscript" Which would be clear enough to understand that I am a person who has been conscripted into the armed forces, but to say I were 'a person with conscription ',  'a person with a presecription' or even 'a person who has a conscription'  that would appear to be rather nonsensical since the English language does not use a noun conventionally to describe the state of being conscripted,  conscription referring to the process rather than any single artefact one can posses like a 'prescription'

Turning it around then I could say though that I were a person with a prescription, but not a person with prescription. I can be a prescribed person though, which is entirely different to being a proscribed one, it's close homophone.

Well getting round to the argument by a difficult route.

I can be a described person and equally a person with a description. Disability or Autism being in this instance of the category 'description' not 'entity'

What all the foregoing really demonstrates is that there are no hard and fast pedagogical rules, only conventional usages and understandings one learns and uses in context. It's more idiom than strict grammar.

In the wider scheme of things it has nothing to do with any grammatical difference in the meaning if the adjective comes before the person, or after, because formal rules allow either. However the social use of language has determined something beyond grammar in determining whether a person is a disabled person, or a person with a disability because those two differences are in a sense shibboleths which determine or betray a lot more than the meaning of the phrase itself.

I have searched hard for a succinct summary of the difference and the best I can find comes ironically from the last place one would expect a style guide for 'political correctness' the Rugby Football league's style manual.

"Disabled people / person /spectator is the preferred term and the term used by the RFL as this reflects the social model of disability which emphasises that people with impairments are disabled by society not by their impairment. For example “Wheelchair users can’t use the facilities because the venue is inaccessible; therefore, we need to modify the building and the services we provide.”

The social model was not developed as some form of “denial” of impairment, it was developed in order to inform society, which includes disabled people, of the real reason that individuals are not able or allowed to take a full and active role in society. It follows then, if society in general, organisations and those individuals working within them acknowledge, understand and implement the ‘social model’, there would be far less discrimination against disabled people and greater access to services and the society as a whole.

Person with a disability is a medical model perspective which implies a person’s impairment or medical condition causes the disability. You firmly attach the disability to the person with this phrase when it’s not it’s with society. For example “Wheelchair users can’t use the facilities because of their impairment, as it prevents them from getting up the steps at the entrance of the venue”.You will come across many people, disabled and non-disabled, who use language we advocate avoiding i.e. people with disabilities. Firstly they may not know about the social model but also may choose to be referred to in a particular way. Where it is not appropriate to challenge (sometimes it will be) promote the use of preferred terminology through your own use and certainly in any marketing material that is produced."

Further musings on why 'people first' language is merely a pretence that enshrines discrimination rather than confronts it can be found in Jim Sinclairs classic piece which bears repeating in full:

"I am not a "person with autism."   I am an autistic person.  Why does this distinction matter to me? 

1) Saying "person with autism" suggests that the autism can be separated from the person.  But this is not the case.  I can be separated from things that are not part of me, and I am still be the same person.  I am usually a "person with a purple shirt," but I could also be a "person with a blue shirt" one day, and a "person with a yellow shirt" the next day, and I would still be the same person, because my clothing is not part of me.  But autism is part of me.  Autism is hard-wired into the ways my brain works.  I am autistic because I cannot be separated from how my brain works.

2) Saying "person with autism" suggests that even if autism is part of the person, it isn't a very important part.  Characteristics that are recognized as central to a person's identity are appropriately stated as adjectives, and may even be used as nouns to describe people: We talk about "male" and "female" people, and even about "men" and "women" and "boys" and "girls," not about "people with maleness" and "people with femaleness."  We describe people's cultural and religious identifications in terms such as "Russian" or "Catholic," not as "person with Russianity" or "person with Catholicism."  We describe important aspects of people's social roles in terms such as "parent" or "worker," not as "person with offspring" or "person who has a job."  We describe important aspects of people's personalities in terms such as "generous" or "outgoing," not as "person with generosity" or "person with extroversion."  Yet autism goes deeper than culture and learned belief systems.  It affects how we relate to others and how we find places in society.  It even affects how we relate to our own bodies.  If I did not have an autistic brain, the person that I am would not exist.  I am autistic because autism is an essential feature of me as a person.

3) Saying "person with autism" suggests that autism is something bad--so bad that is isn't even consistent with being a person.  Nobody objects to using adjectives to refer to characteristics of a person that are considered positive or neutral.  We talk about left-handed people, not "people with left-handedness," and about athletic or musical people, not about "people with athleticism" or "people with musicality."  We might call someone a "blue-eyed person" or a "person with blue eyes," and nobody objects to either descriptor.  It is only when someone has decided that the characteristic being referred to is negative that suddenly people want to separate it from the person.  I know that autism is not a terrible thing, and that it does not make me any less a person.  If other people have trouble remembering that autism doesn't make me any less a person, then that's their problem, not mine.  Let them find a way to remind themselves that I'm a person, without trying to define an essential feature of my personhood as something bad.  I am autistic because I accept and value myself the way I am." copyright Jim Sinclair 1999

The wheat and the chaff

In any system there is always a level of noise that interferes with the essential communicative process, at some point the noise becomes so severe that any message is liable to become swamped by it.

It pains me to do this, and I know what the reaction of those who will suffer most from this decision will be, but I am going to employ much stricter moderation on this blog from now on.

There is level of debate below which nothing is served by prolonging it. I am not trying to convince those who are dyed in the wool in their opposition to change there ways, that is, short of a miracle, impossible. Neither is my blog aimed at the convinced on the other side, I have no need of merely flattering egos in a mutual support club.

My aim is to appeal to the middle, ground, the as yet unconvinced in any direction, and in order to do that I have to filter out the noise.

It is a blog owners prerogative to allow what posts xe will, and there are many out there who are so strict they brook no opposition at all, which of course equally leaves me out when I try and comment on that territory.

I have to say enough is enough, and realise that those whose monofixated rants which end up as no more than prolonged 'bar room' 'Punch and Judy' arguments have no place in the comments section here. Those who left out cannot in any event claim discrimination as the internet and the blogosphere gives them ample chance to continue thosee arguments elsewhere. I happen to believe, not without reason that they are not sufficiently convincing in any case to gain an upper hold on any reasonable legislature or academic consensus, and so I will leave them too it in the 'flat earth land' populated by straw men and over emotional demagogues.

The matters I wish to discuss are far too important for the serious players to be put off by that level of noise.

I want anyone posting here to feel secure in the knowledge that their reason and sensibility will not be assailed by pointless and petty 'grudge' arguments, nor grade school scientific howlers adduced to support unsustainable hypotheses.

Campaign to end discrimination in human fertilisation (update)

Readers may recall a recent blog post, highlighting a particular incidence of such discrimination here and now, and may recall my intent to do some wider campaigning around this issue and wonder what happened.

Well academic work got in the way, that is what happened. However it is time to become active again and provide an update.

To begin with the expected response from an email campaign to contact a number of prominent researchers and names in the field of autism exacted a very poor response. This maybe because the email header was caught in too many spam filters, it maybe that the header sounded like an appeal for funds, not an appeal for action. It may also be that those I sought to contact were equally as busy as me in their academic endeavours and would need reminding. This latter I do intend to pick up on notwithstanding using other methods besides email to prompt a response, especially where the opportunity presents.

The second part of this report deals with the biotethics debate I attended recently. This too was caught up in delays and was postponed from it's original date to a date earlier this week, which fortunately for me co-incided with a stay in London.

The conclusions of the debate even for me with only a lay understanding of genetics, seem pretty clear. Any claims that any disorder has a single or a simple universal marker is very much contrary to the research that is going on into both the genetics and the etiology of various conditions as diverse as bipolar, autism, or Schizophrenia even if the current categories are in themselves sufficiently robust (which is another story)

That does not however mean on the other hand a charter for every crank with an environmental or dietary axe to grind. Matters are complex that is all, and whole books could be written on the complexity.

What is evident to me r is the dangers that are presented from over simplistic reporting of the research, whatever direction it is taking. Journalists like simple headlines, they like certainty not a series of unknown unknowns, and unfortunately those sponsoring the research often want to grab the headlines to, to the consternation of the people actually undertaking the research as this is all part of an economy of academic league tables and journal impact factor.

Often preliminary research findings will be reported before they have been published in peer reviewed journals, indeed sometimes the research is never published at all because it has been found wanting in various ways but the headlines remain.

One need not mention the classic example of Dr Wakefield's now withdrawn and discredited study as an example, there are many others out there whose results are not as conclusive as the headlines suggest, or that do not even say that the headlines suggest.

The problem is however that people do act on these conclusions, companies do offer genetic tests, insurance companies do revise their actuarial schedules, and discrimination of the kind that first drew my attention to this issue does occur.

Denial of equal rights to be the progenitor of a child on account of a false understanding of the science by people who really ought to know better.

What is the solution?

I think at one level it is for researchers to show more responsibility for the way their research is interpreted. For funders and academia likewise.

It is important for ethics review bodies to add an additional dimension to the considerations of any experiment or study. To go beyond the immediate concerns of the participants, to consider the effects it has upon those who have not chosen to be part of the study, but who are nonetheless implicated in terms of it's outcome.

I propose various actions to further this as a campaign and urge people on all sides of any particular divide over "neurodiversity" to give this equal worth, some fights are too important to let our individual differences of opinion get in the way. Bad science is bad science, and bad reporting even worse because it has implications for us all.

Anyway watch this space and keep watching, more will follow....

Another one bites the dust

Has anyone else yet noticed that John Best Jnr's blogs have disappeared from e-blogger?

Did someone get a result there? Is this a victory against hate speech?

Another Study Refutes Vaccination-Autism Link Whether measles shot was alone or in combination didn't matter, researchers say

It is not my usual procedures to copy articles but this one certainly kicks the monkey study in the balls.

I cite the abstract in full:

Objective: The first objective of the study was to determine whether there is a relationship between the measles-mumps-rubella (MMR) vaccination and autism in children. The second objective was to examine whether the risk of autism differs between use of MMR and the single measles vaccine.

Design: Case-control study.

Study Population: The 96 cases with childhood or atypical autism, aged 2 to 15, were included into the study group. Controls consisted of 192 children individually matched to cases by year of birth, sex, and general practitioners.

Methods: Data on autism diagnosis and vaccination history were from physicians. Data on the other probable autism risk factors were collected from mothers. Logistic conditional regression was used to assess the risk of autism resulting from vaccination. Assessment was made for children vaccinated (1) Before diagnosis of autism, and (2) Before first symptoms of autism onset. Odds ratios were adjusted to mother's age, medication during pregnancy, gestation time, perinatal injury and Apgar score.

Results: For children vaccinated before diagnosis, autism risk was lower in children vaccinated with MMR than in the nonvaccinated (OR: 0.17, 95% CI: 0.06-0.52) as well as to vaccinated with single measles vaccine (OR: 0.44, 95% CI: 0.22-0.91). The risk for vaccinated versus nonvaccinated (independent of vaccine type) was 0.28 (95% CI: 0.10-0.76). The risk connected with being vaccinated before onset of first symptoms was significantly lower only for MMR versus single vaccine (OR: 0.47, 95% CI: 0.22-0.99).

Conclusions: The study provides evidence against the association of autism with either MMR or a single measles vaccine.

Nothing new under the sun DSMV

So at long last the deliberations on DSMV are out. Well it has been what some of us have been predicting and campaigning for, for some time, a little logic in the equation, a little nod to where the research is actually pointing.

Indeed there is nothing new under the sun and it does not behove me to write anything new either, this is what I am on record as having said in 2005. (from whichever way you look at it, it's still autism)

"Kanner vs. Asperger

One particular persistent “Urban Legend” viewed over the autistic horizon is that Kanner's syndrome is the paradigm of classic autism and that all other forms are variants or dilutions of this.

The later appearance of Asperger’s syndrome as a diagnosis, the arguments as to whether it justifies the same levels of intervention or services as what was formerly considered to be autism and it’s the way it reads in DSMIV as “autism lite” seems to suggest to those desire to keep autistic purity at the “severe” end of a notional linear spectrum that the manual gives substance to their argument.

However analysis does not bear this out. The debate has raged and continues to rage over as to where it fits ever since Lorna Wing mooted a wider spectrum and drew attention to Asperger’s work,. The practical suggestion of a possible syndrome named after him was not so much drawn from his work as much as to remember his hitherto forgotten contribution to the literature of autism, However that remembrance has in a sense called it into being as a separate syndrome.

The way it is described in DSMIV is a social construct borne of committee decisions and a desire to leave open the debates at the time as to whether Asperger's Syndrome exists on a Schizoid, Schizotypal axis or as a continuum and broader phenotype of autism.

Leaving aside the cultural reasons why Kanner has hitherto received more prominence and become the Grand old Man of Autism as the more senior of the two in the urban legend we have to consider certain facts.

Kanner’s and Asperger's samples were both small in consideration to the population we now know of.

Notwithstanding their common middle European heritage, subsequent geographical separation of where they ended up in practice meant that there were cultural differences which affected the way their papers were written up, and cultural factors determining both the interpretation of the behaviours described and the way those behaviours manifested themselves given the different social milieu.

If anything, what is remarkable about both of their observations, despite the two men’s later trajectories and beliefs, is that given these differences there is a remarkable degree of correlation between these two seminal research papers, enough to indicate that they were dealing with small samples of a much larger and disperse population. Indeed the global and cultural separation of the two in the 1930’s and 40’s would tend to suggest that the phenomenon they observed and described was a real and global one.

The categorisation of DSMIV and the creation of Asperger’s syndrome as a separate clinical category has merely confused matters. Gillberg is on record as stating his opinion that none of Asperger’s patients would satisfy a current diagnosis of Asperger’s Disorder (DSM version) and all would come into the description of Autistic Disorder. Likewise Atwood an erstwhile populariser of Asperger’s syndrome has declared that the only difference between it and High Functioning Autism is the spelling.

Similarly a longitudinal study of Kanner’s patients would indicate they more readily describe a broader phenotype of functioning ability than those who seek to confine autism to within a strictly low functioning, non verbal paradigm for what appear to be largely political and social reasons I will elaborate later.

Finally in the descriptions in DSMIV itself Asperger’s Disorder is identical to Autistic Disorder except in that Autistic Disorder includes additional criteria for communication.

These criteria appear to have nothing to do with cognitive development, and are broad enough in my opinion to include practically everyone who currently bears the separate diagnosis of Asperger’s Disorder.

The relationship of Cognitive Capacity (a term I prefer to IQ as being accurately descriptive of what IQ attempts but fails to comprehensively map) to Autism or AS is another red herring.

The criteria of Asperger’s syndrome seem specifically to have been written to exclude very low IQ, and without reference to any real knowledge of what is being described.

It is merely a sleight of hand or as Film maker Alfred Hitchcock would describe it a “McGuffin”

It is arbitrary. Asperger’s syndrome as “high IQ autism” is not borne out when one considers measured IQ’s of 70 as the starting point. I do not know a figure for my own IQ, perhaps Professor Simon Baron Cohen has that somewhere but I think it is irrelevant to understanding of what is at the core of autism in that the possession of greater or lesser cognitive capacity is not determined by the autistic traits per se, and that the existence of greater of lesser cognitive capacity does not determine anything about the autistic traits either other than ones eventual ability to mitigate their effect. Glenys Jones, from Birmingham University, for example is on record as having stated something of this sort."