A Touch of Alyricism

Dedicated to the equally fascinating topics of autistic advocacy and the 'sisterly sophistries' of radical gender feminism. Other topics may occasionally crop up. Contactable at alyric@gmail.com


Polemicist since Grade 8

Friday, March 13, 2009

IACC Strategic Plan and Environment

The Interagency Autism Coordinating Committee (IACC) Strategic Plan for Autism Spectrum Disorder Research has now been published. It’s a very broad reaching document which is good for a strategic plan. Characteristic of the document is the unfinished nature of the research goals. That is also good in a strategic plan. In all events, the specific goals will be dictated by discussions of a different purpose and much greater depth.

The IACC leans somewhat heavily on the Autism and the Environment: Challenges and Opportunities for Research, Workshop Proceedings 2008, Institute of Medicine of the National Academies for their environmental goals. Inexplicably they also manage to mischaracterise the results and purpose of the workshop. The IOM workshop made no recommendations. What they tried to do was tackle the ‘environmental’ angle with the broadest brush possible and with anyone who could have a stake in the issue. The range of research possibilities discussed was enormous. Those are loosely collected together in Appendix A. These workshop proceedings are definitely worth a read just to get a feel for the size of the problem and some of the ways that research is developing.

The IOM invited many parent organisations to participate, giving the lead to the three prominent anti-vaccination organisations, the National Autism Association, Safeminds and Generation Rescue. So the usual players were represented; Sallie Bernard, Mark Blaxill, Kelli Ann Davis, Lynn Redwood, Robert Krakow. Though there were several representatives of Autism Speaks, the perspective of the parent ‘advocates’ was given by Laura Bono of NAA. Now the IOM workshop organisers bent over backwards with this crew. Not once did they object to the silliest statement or the most specious argument and Laura Bono’s perspective had plenty of both. A brief summary of her points is as follows:

$ “Declare autism a national health emergency under the Public Health Act and treat it with urgency.”. The one thing anti-vaxxers do well is Science by fiat and/or assertion. There is no evidence for an epidemic, but that counts for little against the need for autism to be a medical condition that is by definition not genetic and treatable (by their methods).

$ “Autism is both economically and emotionally devastating to the children and their families. Many families are on the brink of bankruptcy as they struggle to get insurance and the medical attention their children need. Murder/suicides of parents and their autistic children are on the rise.” Apart from bankruptcy chasing expensive and unproven CAM therapies, I doubt there’s a grain of truth in the rest of it.

$ Laura then chides the CDC for ‘credibility ‘problems in failing to declare an epidemic then quotes Julie Geberding, Director CDC’s explanation for it: “Our estimates are becoming better and more consistent, though we can’t tell yet if there is a true increase in ASDs [autism spectrum disorders] or if the changes are the result of our better studies.” This is then called a denial which is unacceptable because it thwarts research into environmental factors. Why should it?

$ “Autism is an environmentally triggered problem. If it is environmental, then it is treatable and preventable. It is not hopeless and lifelong. It is hopeful, with a possible cure.” Again it’s science by assertion but also a really good example of wishful thinking.

$ “Recent clinical investigations have identified numerous comorbid disease states in children with autism. These include immune system abnormalities; inflammatory bowel disease; oxidative stress; disordered urine and serum chemistries, including elevated porphyrins; methylation disturbances; increased body burdens of metals, including mercury and lead; chronic viral, fungal, and bacterial infections; and microglial activation in the brain.” This is certainly what is treated biomedically and very often all these comorbidities occur inside the one child reading treatment accounts, which isn’t a good fit for the healthy looking shiny haired children posing on the back cover of Laura’s presentation.

$ “The research paradigm needs to shift from autistic children are genetically defective to autistic children are sick and treatable. We should only grant money to genetic vulnerability and epidemiology studies that have a clear environmental hypothesis.” That’s clear enough. If you are genetically defective you can’t be treated or so this false dichotomy is saying. That narrow thinking carries on to dictating a narrow funding rationale based on no evidence whatsoever.

$ “There is a growing body of evidence implicating vaccine overload, mercury and aluminum from vaccines. Thousands of parents agree with this research. They watch their children regress after being vaccinated.” Again this is science by anecdote. There is no evidence corroborated by carefully documented case histories, which is surprising when these anti-vaxxers point to this as a major plank in their rationale.

$ “Regardless of controversy surrounding any theory, we must research and produce successful antioxidant, methylation, and blood-brain barrier chelation treatments, as well as immune system, detoxification, and inflammation interventions.” Note the anti-science attitude reflected in the call to produce the remedy well ahead of any good theoretical grounds for doing so. Also note that it is rather heavily implied that chelation is not effective given the lack of a blood-brain barrier chelation treatment. So why do they continue doing it?

$ “The guiding principles should be to pursue research and treatments that will impact the most lives as quickly as possible and follow clues provided by treatments currently working in children. Such an agenda would best be served by a translational research protocol where clinicians who care for children with autism advise research into the most promising areas of intervention.” So the guiding lights are to be a bunch of DAN doctors directing the agenda.

$ “It is imperative that the working group proceed with urgency and follow the truth wherever it leads.” Yes but it’s only if it fits our definition of truth.
Well no one laughed not even when Laura specifically exhorted the workshop to use provoked urine samples for heavy metals testing, a species of fraud. But because no one laughed or raised the least protest at the amount of anti-science on display, the advocacy groups became essentially token participants and not taken seriously. They could have taken advantage of this phenomenal opportunity to look at the research currently on offer particularly the prospective style initiatives where a specific group is tracked basically before anything happens. Not all of them will cover environmental factors but some include them. The National Children’s Study certainly does. The US is also involved in the Norwegian ABC study, which tracks 100,000 women from early pregnancy taking all kinds of samples on the way. This includes addressing things like vaccine history as they arise. This is exciting research with the best possible chance for turning up meaningful data including valid biomarkers for autism.

So what, if any of their wish list made it into the IACC strategic plan? In very general terms, some will but not the narrow concerns of NAA and associated organisations. As the plan states:

“A clear need exists to advance understanding of the many phenotypes of ASD, including studies that link genotype to phenotype, investigations of natural and treated history, analyses of genetic interaction with environmental exposures, and studies of co-occurring medical conditions. “

There is a need to look with a very broad brush because we don’t know enough at present to narrow the exploratory field prematurely.