Sunday, March 6, 2011

Flawed science versus anecdotes...

Years ago I tried to take up the issue of aluminium in a packaged rice milk with the local food safety body (the NSW Food Authority). In my letter I pointed out the coincidence between my daughter's serious regression and her ingestion of rice milk; her high hair aluminium load as revealed by laboratory testing; and the results of a test on all her water and drinking products which found the level of aluminium in the rice milk to be many orders of magnitude higher than mandated water safety levels. (I didn't bother adding that chelating to remove heavy metals appeared to bring an almost immediate and profound improvement.)

The Food Authority kindly replied that, because rice milk is considered a foodstuff, it is not covered by the same standards that protect water. In fact according to them, there are no aluminium standards set for foodstuffs. The representative from the Food Authority told me that even if my child became demonstrably and directly sick as a result of ingesting aluminium from a foodstuff, the company responsible could not be sued, because there is no standard to accuse them of being in breach of.

This little excursion into the disastrous history of my child-raising has a point. For me, seeing what harm the ingestion of high levels of aluminium apparently did to my child, the matter of neurotoxins in foods commonly given to children (and especially to gut compromised children, such as autistic children, whose parents are trying a casein free diet) became something of an emergency. I desperately wanted to draw government attention to the possible problem and see something done to stop other children going through the devastating collapse my girl suffered. But alas, because of one small omission in the legislation, there was no hope of bringing change. The Food Authority person I spoke to was adamant that to bring changes to recommendations like aluminium levels in foodstuffs is an extremely unwieldy process, likely to take years (if ever it happens at all). And they don't start that kind of ball rolling for one person.

So what was I left with? A girl who had plumbed the depths of regression (functional blindness, anorexia, vegetativeness) and come back to a point about that of a twelve month old baby, still requiring round-the-clock care. Strong evidence that at least one of the main brain injurers was aluminium, but no way of acting on this to save other children. A set of experiences that could not be comprehended using known standards or legislated science.

I was left with an anecdote.

The trouble with anecdotalism on the net is that there are so many of us, and we come at our topic of interest from such widely different perspectives. We're unfocused, undisciplined and we don't interact a whole lot together, much as certain paid corporate stand-ins like to pretend that there's some kind of network. (I don't have time to network.) We have a lot of individual stories, and there are an awful lot of toxins (and possible reactions to them) to speak about. And of course experiences like my girl's haven't been backed up by scientific studies.

But if I can simplify what I see as the main hurdle in reducing future suffering — and isn't that the main reason to talk about autism? To try to help others not yet born into the nightmare? — it's that the pressures against true investigation and research are simply too powerful when compared to the pressures toward proper research. On the one side are corporate interests and governments connected to them. On the other is the pure, simple motor of suffering. And those of us dealing with the suffering on a regular basis are mostly busy handling that.

For this reason alone, I don't think it's fair for anyone to complain that poor 'proper' scientists are given no more intellectual weight than anecdotalists on the internet. Given the Food Authority's mandated silence on the topic of aluminium, and their caution to me that I mustn't ever make the claim that the levels of toxic metal in my child's foodstuff were 'high', 'dangerous', 'harmful' etc (or I might be sued by the company involved), it's clear to me that the science of food safety has a very pernicious blind spot. And if the science of food safety has a blind spot, what about the science of vaccines? Genetic modification? Pesticides?

What's the point of scientific authority if the science is blind?

Something causes autism.