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

19 comments:

Anonymous said...

Rather a brief review on amazon - could you expand a bit please? I know I should buy the book and make up my own mind, but it looks interesting and my nightstand is already groaning.
Cheers

Anonymous said...
This comment has been removed by a blog administrator.
Larry Arnold PhD FRSA said...

I have removed the last comment which contained advertising.

For what it is worth the supposed correlation between autism and TV viewing is an example of the bad science I am attempting to illustrate.

One could just as well correlate autism or anything with the increasing prices of petrol. It would be a perfect correlation just as the TV viewing one is. If there were a cultural prerogative to connect the two then you could guarantee that some trained scientist would attempt it.

Larry Arnold PhD FRSA said...

I think that the problem is for those who believe that science is some kind of a ruler that can objectively be held up against the world.

Well arguing by the analogy. The units of measurement are decided by culture.

And arguing a priori

It is not science that describes neurology but neurology that determines that there is even a process which we call science.

Larry Arnold PhD FRSA said...

I would urge people to read Nadesan albeit I am resentful that this book has needs been written by a non autistic "colonist" of the genre.

That being said there is nothing there I much disagree with and it is a fair summary of much that I have already considered and discovered to be the case.

I regret that it does not give the position to autistic culture itself that it might, the obligatory quote from Amanda, presumably lifted from a period of lurking on Aut Advo is about as far it goes there.

Politically it is still naive.

Anonymous said...

As an nt scientist it is good to be challenged and provoked. I appreciate your very insightful post.

Larry Arnold PhD FRSA said...

I don't believe the phrase is one of mine, but the context of the phrase as I understand it comes from the post war American dream where disease and war have been abolished in the popular imagination and things can only get better. A different weltanschaung to the experience of those who lived during the depression, or say the austerity years in post war UK.

Anyway it is the notion that a "perfect" child is a right and anything but, any disability causes cognitive dissonance within that world view and therefore becomes an affront to the expectations of parenthood that is deeply embedded within that culture. It is what engenders the tragedy model discourse seen in a variety of movies, where disability is portrayed as loss. Essentially Jim Sinclairs "Dont Mourn for us" is an answer to this ethic.

The belief that autism is an affront to parenthood is an affront to my affirmation of being. And no I do not believe autism is an affront to parenthood, it is merely percieved far too often as such.

Larry Arnold PhD FRSA said...

To some undoubtedly it is, there actions show it.

Larry Arnold PhD FRSA said...

You seem to have answered your own question. If you are a curebie with a misguided notion as to the etiology of autism and a wealth of conspiracy theories behind that supposition then I would say you are not accepting your son's autism as something that was inevitable.

As for drawing conclusions from my lack of a reply, that is plain wrong to do. I have been at Birmingham University all day, reading papers on the genetics of autism amongst other things and remained in Birmingham for my NAS befriender training for the evening, so autism has been occupying much of my time today, never mind living with it.

Sometimes I am too busy to keep a constant eye on my blog.

Larry Arnold PhD FRSA said...

You flatter yourself in assuming I know what your actions are, you will need to remind me.

But to repeat, if you believe that science holds some "magic bullet" or some infallible intervention that can turn any autistic child into a replica NT who will stay NT throughout there lifetime experiencing no stress as a result, I think you are very wrong.

One needs to work with autism not against it to achieve results.

Larry Arnold PhD FRSA said...

Yes

But then you see I am no diplomat.

Larry Arnold PhD FRSA said...

Oh Well

"don't ask me what I think of you, I might not give the answer that you want me to"

http://www.youtube.com/watch?v=KE4HGlmtOcg

Larry Arnold PhD FRSA said...

The situation is simply this, when pushed to give an answer that I did suspect would be unpopular, but being as the question was phrased in the way it was and given what I have said before, could only be given in the negative I had no more choice to answer in that way than if I were under oath in a court of law.

That is the way I am, even had I avoided giving the answer you would have taken it as yes anyway so there was no avoiding the situation except for me to tell a lie.

I cannot even claim the offending phrase for one of my own as it comes from the general discourse on disability and stands for any situation where parents have an unrealistic belief that they have been denied the "perfect" child that no society in the world has ever been capable of delivering

For even if your child has sailed through school with straight A's and is on the threshold of a promising career as a concert violinist, sometimes the grim reaper has other plans.

One should treasure what one has, cos it is all fragile.

To repeat the point, I think it is the society we live in that drives a degree of expectation that cannot be met and the resulting cognitive dissonance is what is driving the blame culture.

Anonymous said...

Jonsmom wrote:
(Yes I do hope there is a "magic bullet" that would cure my son's autism and alleviate his pain.)

Perhaps in the year 2060 you might get your wish as far as a possible rewiring of his neural network.

Until that time maybe have some empathy for those you claim to appreciate...
Larry is a magnificent human being and seeing you toy with him is really not very nice of you.

Anonymous said...

Jonsmum said...
I understand what you're saying and genuinely have no wish to argue with you.

The person you where arguing with was yourself and you will grow from it.

Miss Pink and fluffy

Larry Arnold PhD FRSA said...

The problem is that it seems not possible to disagree with someone without offending them.

It all comes down to the two ways of looking at disability and how one conceptualises it.

It does not have to be one's child it can be how one conceptualises oneself or as I shall later demonstrate, ones spouse.

For example let us choose a simple situation where I would hope there can be few misunderstandings.

Let us say I have just broken my leg.

I can view that as utter catastrophe or I can simply accept it is an accident I will have to deal with.

In the first place if I am over catastrophising I am in my actions demonstrating that I am internally conceptualising that disability as an affront to my notion of personhood as concieved of as being "whole" without that disability.

In the second case I am realising that to go through life without a broken leg is just luck and that I cannot really expect not to have to deal with vicissitudes from time to time.

I think my dad, though he professed to love me, did nonetheless regard my failure to come up to his expectations as an affront to his model of what family life should be, whereas my mum on the other hand was just glad that I was alive, not that we did not have difficult times either especially as I got older.

My dad further demonstrated that was his fundemental outlook in life when he failed to take account of my mums increasing disability, all he cared about was that his routine was now upset and he might have to get his own dinner or take a share in the housework, that naturally led to the break up of the marriage and my taking on the responsibilities of personal care for my mother he could not take on. That he regarded as the ultimate betrayal by his son, who should have taken his side and left mum to go into a nursing home or whatever.

My dad is dead now, and I have no ill will towards his memory. To some extent the marriage breakdown was a result of my dads own upbringing outside of a stable family, and the dissonance between his dream of creating with his wife and children, that ideal family he never had when he was growing up.

Some arguments you can't win.

Larry Arnold PhD FRSA said...

I think scruffy the cat knows me better than anyone else here, and that is not just because she is saying nice things about me.

Scruffy is a parent to autistic children too.

Anonymous said...

As a parent and also someone who is dxed Aspergers myself I would say that a "curbie" is a different mind frame than a parent or person who wishes to help, teach people of differnt neurological make-up.

There is a differnce.
Curbie would mean someone who tries differnt methods on there child regardless of the consequences or dignity of their child and risking their lives.

We are not monsters who say do not treat pain or suffering. Or do not not teach. That is not the message.

Now some day there maybe like I said someway to rewire the brain mechanically or something as the scientists are already researching ways to do this for people whose limbs do not work.

I saw a program on this recently on T.V.

They also talked of the downfalls of cyber research with implants in that the govt may try to create a net to have these cyborg implanted people hooked up to a network of sorts. Very sci-fi like but the ethics and morallity is always at stake and there are high stakes...

That may seem very far fecthed right now but they are researching with this wiring that is so small so it can be threaded through the body without interfering with other things..

On another note...
My mother had epilepsy... she didn't want it... she was treated for it and then refused treatment... her epilepsy subsided for many years and then it returned.. and still she refused treatment even though all evidence was that she had it,, she wouldn't believe it and risked her life and those of others by driving.. she eventually due to circumstances was forced to come to grips with her epilepsy and take medication for it..

It is curious how people think...
I do understand and I think Larry does too that some parents rightfully seek treatments for their children that are appropriate and perhaps helpful.

But what the objection is to ..
Is unproven possibly harmful treatments with dubious claims of cures...
Now if one is believes as we do that chelation cannot reverse brain wiring, than it is a mute point all that we are trying to say... To convey to others ..
As we will be so diameterically opposed to each others ideas that perhaps there will be no middle ground.... and if that is so.. then there is no point in arguing at all. It is pointless... as both mind states are convinced that they are in the right...

Larry Arnold PhD FRSA said...

I was not toying with you by not answering your question, can't you see that the very honesty that you profess to admire could only have lead to the answer I gave, and since you already had decided what the answer was when I did not answer there was no reason not to post it and so your feelings were not spared.

I was trying to avoid offence, but then the offence is obviosly in the particular perspective I have on disability in general.

Let us leave individuals out of this.

If I did not have a care for autistic children as well as adults, would I be able to maintain my position on the NAS.

The NAS to repeat is not just a campaigning organisation, it runs schools and other services, and so in my position I have to take the joint responsibility for the care of all those who are receiving direct services from the NAS. That is a strict legal and moral responsibility

I do not know your exact situation but you put yourself on the spot aswell and invited a confrontation with my outlook (and as I say that is not my unique outlook, it is part of a wider culture I consider myself to be part of)

This is culture clash, just as a Moslem might be offended by my Christian belief that his prophet is misguided and vice versa.

Anyway I shall soon call a close to any more comments on this blog as I will I suppose move on to another one.

I am autistic and we are somewhat notorios for what is called black and white thinking what you see is what you get, hence the reference to the Fleetwood Mac song, if you are likely to be offended please don't ask.