Saturday, May 06, 2006

The relativity of autistic definition and appearance.

I am reminded of a somewhat trite aphorism which goes thus:

“Two prisoners looked out from the cell window, one saw bars the other stars”

Well it reminds me how two journalists describing the same report can give it a completely different slant as I read these two commentaries on the CDC report of the epidemiology of autism. Describing the same data set thus we get two different articles:

US survey shows autism very common

Autism Study Finds Increase in Cases

One article suggests autism is common, the other that it is increasing, both show the kind of rates that have long been suspected by Lorna Wing and Christopher Gillberg.

Now the CDC study on which the articles are based study seems to suggest there is a cultural bias prevalent in autism diagnosis. The study itself is one of the incidence of autism diagnosis in children not one of the prevalence in the general population, and so is in no way an indicator of how much autism is actually out there.

When autism first hit the medical dictionaries the skewed demographics of the diagnostics gave rise to false conclusions as well, e.g the refrigerator mother theory. To me it figures that to begin with that only rich parents who were well connected would have been able to have their children diagnosed. Since then and with the wider knowledge of Asperger's paper there has been diagnosis creep. Notwithstanding the greater degree of diagnosis that still has not penetrated ethnic and disadvantaged communities to the same extent as it has amongst those with more access to medical care and more interest in the western cultural episteme. We only have to look at the ridiculous assertions of epidemiologist Eric Fombonne who purports to have found no autism in the Inuit, to see that there are probably sound reasons why he did not find it, notwithstanding his own possible cultural blindness.

Anyway within the whole autistic upharsination debate I follow Tony Atwood's model of different trajectories; Diagnosis of Asperger's syndrome. I believe there are cultural and economic reasons why diagnosis does not reflect what is probably the genuine prevalence.

I would not say either as some do, that there is ever over diagnosis, only that some clinicians are more likely to diagnose at the margins than others being as autism shades imperceptibly into what e some call shadow syndromes or broader autism phenotype.

What autism is to me is a set of differences, probably neuro biological that govern the way we interpret the social, perceptual and sensory world. We are born with a different programme. Now because these differences as they develop involve social factors it is inevitable that at different times in different circumstances and in different cultures, that those differences are going to be either overlooked, alternatively explained or accepted in different ways, according to what is the norm, not just in terms of social interaction, but in terms of the interpretation of illness disability and difference too.

Autism is bound to be complicated by other factors that will alos affect the developmental trajectory. I do not believe anyone is ever "recovered" as the curebies have it but that they are simply helped along the way of a path that is already set (it is written as I am so fond of saying) I think my path was set from the beginning, however the way in which I have adapted into society and the ideologies I have developed have been very much dependent upon cultural and educational factors.

I default back to my pre autism knowledge division of people into convergent and divergent thinkers. Mine has been a divergent path of dissent, disagreement and scepticism. That is likely to do with my genetics as well as my upbringing, My brother who shares so many of my genes is similar in his outlook to me.

I think convergent thinking is more prevalent in any group and is indeed quite prevalent amongst “aspies”. Besides I think there is a whole meta psychology of reaction to diagnosis that in itself affects how one constructs self and interaction with the world based upon the models of disability one has absorbed growing up. I am different because I encountered radical models and so I react to my diagnosis and the whole medical field in those terms.


Mike Stanton said...

Welcome to the Hub, Larry :-) I like your entry in the Wiktionary for upharsination. If only it was so easy to get your neologisms in the OED.

Autism Diva said...

Hi, Larry!