Sunday, September 27, 2009

First thoughts on the NHS' autism prevalence survey.

It might be assumed that I would welcome this study because it confirms what I would like to hear, what I might have long suspected, but no, this is not the case, I will not allow myself to fall into the same traps as those who argue the opposite to what I believe, of believing the first piece of 'evidence' that comes along uncritically.

No study can prove anything if it stands in isolation, nor can one presume just because a University is behind it, that it embodies the best traditions of objective investigation at all. There are simply too many contradictory studies out there, many of them the result of longstanding academic rivalrys between disciplines and indeed institutions, never mind rivalrys between schools of thought.

Having read this report now, I find myself to have been at least partially correct in my suspicions about the inherent bias with which this study was (inevitably) produced.

There is a strong subtext in it, a definate semiotic for those used to this sort of deconstruction, that the hidden message as it were, is the continuing presumption that those identified with ASD are inherently inferior to those who have carried out this examination. The preposterous arrogance of the academic and diagnostitian alike that pervades so much of the literature.

It is an old, old bias, not particularly aimed at autistic people either, because it is inherently classbound, and goes back to those presumptions about those who favour restrictive over elaborative linguistic codes.

Alas I am the latter and wonder even with this presumption of verbal IQ based upon a set of difficult to spell words from a particularly non anglo saxon etymology, whether the likes of Brugha and Baron-Cohen can recognise gallinovularity when they see it. - With a liberal does of the same academic arrogance myself in assuming on my part that they even know to whom and of what I am refering to here.

That is the point entirely!

That the study seems to assume, and I guess this goes back to Rutter and many others who have accepted guesswork into the literature without ever examining the accuracy of what to them is 'self evident' for instance a high correlation between low IQ and ASD, then effectively through implication drawing conclusions from the relative scarcity (on such a ridiculously small sample of 19) of autistics who have achieved a level of higher education.

There is much nonsence here if one attempts to 'correlate' the verbal output of these doyens of academic prolixity on the subject of ASD. to what can be seen outwith the academic discipline they are rooted in.

Simon Baron Cohen for instance seems to rail on forever about some hidden cohort of Cambridge Mathematicians, but has never pointed out that there is some evidence that autistic people are underrepresented at University. This is not a new fact as it has long been apparant from examinging UCAS and DSA statistics.

At this point I stumble into the inevitable pit of anectdotal evidence to suggest why.

Not because we are not capable at all, but because the system is inherently discriminating. Indeed the Educational system as a whole is, as can be seen from the number of exclusions in school, the poor academic record of special schools, and above all as I know from some familiarity with HE and Autistic students, the difficulties that are caused by the failure to adequatly accomodate.

Yes this is the Social Model of disability, and this particular study cannot be understood without looking at such an alternative way of constructing the phenomena which it claims to be measuring.

It is all medically based, the experts come with a bias of medical practice and epistemology, not only that they place reliance on the shifting sands of so called gold standard diagnostic and screening methods. Diagnosing what I ask? The shifting sands of autistic definition.

Autism is not what you think and is never what you think, not a constant at all but being subtly redifined by custom and practice as well as revision all the time.

There are huge flaws in this survey before one even begins to look at the sampling method, no conclusions whatever can be safely drawn from it, because it falls foul of that most fundemental of truisms "whichever way you look at it, it's still autism".

I suggest a compulsory course in disability studies would be a good start for Prof. Brugha and his team. Then come back with a methodology......

(note at the time of writing my personal website, and hence any links that refer to it, is temporarily down due to maintenance)

4 comments:

Anemone said...

Your link didn't work for me.

Socrates said...

And as Baron-Cohen says

"Not everyone on the autism spectrum needs a diagnosis – this should be reserved for those who need it to access help"

And he goes on to say

"The idea of a spectrum is not just a spectrum of severity within those attending clinics, but a spectrum that runs right through the population. But a diagnosis is restricted to those who need it because the features are causing suffering to some degree."


And

"the upshot of the change to thinking about a spectrum is that there is no longer such a clear point at which one can say ‘this person needs a diagnosis’ and ‘this person does not’, because of intermediate cases."

In other words, I may need a diagnosis because other people are Bullying me at work, school or I need a home-help to make sure I get to the Post Office to pay my bills on time...

We are certainly navigating strange waters... A Chimeric beast of uncertain parentage that slips in and out of focus as one attempts examine it...

laurentius rex said...

What really angers me is that the concept of the spectrum and all these diagnostic schedules leave out what I consider a vital part of the experience which is differences in sensory processing.

How can any survey be accurate if it leaves this out?

How can any diagnostic schedule have any value if it leaves this out?

How can these 'experts' talk about the notion of autism as if they think they know about it if they leave this out?

CLASS diagnoses according to DSMIV tr how can we trust any service that is so out of touch with reality?

laurentius rex said...

Which link?

The one at the top or the one at the bottom.

I know the bottom one wasn't working yesterday as the whole site was down for maintenance but it should work now.