Friday, August 29, 2008
One of my abilities is the ability to think in pictures though images is probably a better way to talk about it, as there is nothing particularly flat or two dimensional about this. I believe this allows me to easily create analogies and to be able to approach problems from different directions, that would never occur to someone who has to construct everything in words. Which part of the neurodiverse territories this comes from does not matter for the argument here. I want to give you a little example illustrating the fallacy of trying to find a medical cure for complex neurodevelopmental differences.
I don't suppose many of you have seen either a Stevengraph, or know the workings of Jacquard loom. A Stevengraph was an elaborate silk picture, woven on a Jacquard loom which uses punched card to determine how the threads are all woven together. To see one in action as I have at Coventry's museum in the past is quite amazing.
Anyway if we were to consider the Stevengraph as the brain, we could see that the punched cards are perhaps the DNA, and the mechanical maintenance of the machine, that keeps it oiled, the parts fitting together properly, and feeds in the different coloured silk could be seen as the epigenetic or environmental factors that also have to gel to create the flawless finished product.
Now imagine one of these wonderful artefacts gone awry, perhaps with rivers of red silk running through it, or sections of the picture missing. How can you fix it? If you unpick all the silk that ought not to be there, or attempt to patch in what was missing, you will not get the original intended picture back, it won't have the same structure, it won't be the same at all. And to try and go back one stage further and discover just where it went wrong, if it is in the punched cards for instance, to discover which particular extra holes, and which missing ones caused it all to go awry would be a nightmare.
Well a Stevengraph elaborate though it is, is a lot less complex than the brain. You can no more expect to unpick dyslexia, or autism, and get the whole picture back, than you can unpick the silk. There is no easy magic pill. You can't just oil the cranks and get it to run right, it's more than that.
That is why I do not believe in easy medical answers and quick fixes. The medic is akin to the mechanic, trying to keep the machine running, not the designer who punched all those holes.
Saturday, August 16, 2008
How would they have conceptualised me photographically and textually within their limited knowledge then and what would I make of it reading it all back today?
I do not know the half of it even. I know the pictures at least but the text is lost, and even so what would it say about me today, about what I am and what I became. It would have been at best an incomplete story.
I can write my own story now, though my past has to be written partly by reference to my parents memories (such as I remember their memories) as you can see in autobiography, but what did I "write" back then before I could read or write and how did I negotiate my existence and self in the myriad of situations I was placed in? How much would have been true and how much construction?
Who knows and we never do, I certainly do not. It is unfortunate that my parents are dead now so this debate cannot be had at an adult level with them, but my wasn't I cute ....
Friday, August 15, 2008
I intend to turn aside from the sociological rumblings around autism and back to what seems to be everyone's favourite topic in the blogosphere, which is the science of autism.
I will be presenting a paper very soon, which is rather critical of that science, and I expect the that those devotees who see everything in science as either black or white will be muttering to themselves "There goes would be Dr Larry again, with his sour grapes, knocking everything down but not putting anything in it's place" I had similar comments on my school reports when I refused to take the standard theories of the day at face value simply because they came with the authority of the teacher.
Well for once I shall defer a little to authority, to a more experienced researcher than myself who has doubtless read more papers than I know existed.
Incidentally it is an article of his that gave me a lot of pause for thought when writing my recent paper.
His name is Dermot Bowler, and he has not long ago had a book called:
"Autistic Spectrum Disorders, Psychological Theory and Research"
Published by Wiley in 2007
Now whilst his literary style would not gain him an A* pass in todays A level exams, I should be the last person to hold that against him :)
There are a number of chapters there where he reviews the current theories and the studies out without interposing his own position too much.
I would just like to quote a couple of pertinent passages from the final chapter of the book where he talks about the somewhat erratic nature of all the research so far:
"Failure to replicate findings can be explained in a number of ways. Either the phenomenon does not exist and the initial, positive finding was a random event. Or perhaps there were differences in the samples used; one study may have tested higher-functioning or older individuals while another used those with lower IQ. Many studies have small sample sizes and as a consequence have insufficient statistical power to reveal between group differences. Procedural differences may also yield different outcomes......"There speaks someone who has read many studies critically in the way they should be read, and he even includes his own work in that summary.
Further on he says at the very end of the book:
"The speculations in the last paragraph bring us back to the question of what it must be like to be autistic (See Frith and Happe 1999). Ultimately, the psychology of ASD must provide an answer to this question. But it must also provide an explanation. Readers who have made it this far (as well as those who have skipped straight to here) may be expecting such descriptions and explanations as well as a punchy take-home message. Without wishing to be unkind to colleagues in the field (or perhaps wishing to be unkind to those who often misinterpret their ideas), the message is probably that we are sometimes too quick to generate quick snappy messages and that we are often too uncritical of the work we ourselves do. Autism spectrum disorder is now known to be a set of conditions that should not be reduced to a simple dichotomy of presence and absence. When present the conditions are multidimensional and complex, and although they share the common characteristics of social impairment and repetitive behaviours (at least from the perspective of a typically developed person) they often exhibit additional features that are not necessarily defining features of the spectrum. Such complexity requires a more subtle explanation than a simple reduction to an absent theory of mind, a failure of affective appreciation, diminished sense of self of fragmented perception. The complexity of ASD requires us to take a more distanced view and to go beyond simply trying to find new ways of describing the fact that people with ASD are autistic Science is about the reduction of complexity to simpler sets of entities and processes that interact in ways that are controlled descriptions of the behavioural manifestations of ASD. The challenge that faces us now is to step outside our own narrow conception of the issue and to work out how they fit together and why."It is very pertinent for me to be considering that too, at a time when I am currently trying to attract funding to my own research in the hope that I will in turn not replicate the faults of all too many small scale studies.