How to follow the rising prevalence rates of autism: an epidemic or a health-related disaster?

Since 1988 the World Health Organization in collaboration with the Centre (the european term for center) for Research on the Epidemiology of Disasters has kept a database (Emergency Events Database EM-DAT) on natural disasters. The database is currently kept by the government of Belgium (see http://datahub.io/dataset/emdat). Although the main objective of the database is to offer information regarding humanitarian help at the international level it also informs on possible ways of risk reduction and the ability to integrate information using different metrics.

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In regards to autism, the data seems clear. There is a rising prevalence of the disorder although the reasons for the same are still being argued. Within the United States the federal agency that tracks emerging health related threats and outbreaks is the Centers for Disease Control and Prevention (CDC). This agency has an international presence and its officers are not only public health officials, but also include veterinarians, statisticians and other diverse physicians. When talking about rising prevalence rates and possible epidemics, that CDC has focused on possible infectious threats. Otherwise experience with disorders of unknown origin posses a problem to the CDC. It is not surprising that their recommendations, as in the case of the obesity epidemic (http://www.cdc.gov/CDCTV/ObesityEpidemic/), seem confined to common sense. Overall the CDC is markedly conservative in its explanations, reported guidelines, and prevalence rates. The “take no risk attitude” of the CDC has been criticized when dealing with other disorders like HIV screening (http://www.northwestern.edu/newscenter/stories/2013/03/current-hiv-screenings-guidelines-are-too-conservative.html). I think that if the CDC is unable to offer answers then a conjoint international effort could help in answering important questions.

One possibility to consider is whether we could approach the rising prevalence of autism as a “natural disaster”. This proposition is not as outlandish as it sounds. Natural disasters are physical phenomena caused by geophysical (earthquakes and landslides), hydrological (floods), climatological (tornados) or biological (think autism) events. Disasters may not be the sole construct of natural events, but can also be man-made (hazardous materials, radioactive disasters).

The Centre for Research on the Epidemiology of Disasters (CRED, see http://www.cred.be/) defines and follows a natural disaster when 10 or more people are killed, 100 or more people are affected, and/or when a government declares a state of emergency or requests international assistance. Autism does comply with these criteria. My own personal experience with the condition in acquiring brains from young victims that have drowned, that have died by running into streets while being oblivious to incoming traffic, and cases of sudden death attributed to seizures account for significant mortality in the condition. Furthermore, this natural disaster affects the whole life of an individual starting when they are children.

Voltaire’s main character in Candide, who non-coincidentally lived a sheltered life, suffered from candid optimism in believing hat everything happens for a reason. Rousseau who criticized Voltaire’s work claimed that some disasters happen as a consequence of people’s behaviors, as things that can be avoided. We are living in a polluted environment where the developing fetus and young child are at higher risk of adverse outcomes due to them. Even when safety codes are available they not being enforced (think of prenatal ultrasound see https://corticalchauvinism.com/2013/01/30/the-need-for-further-studies-on-the-safety-of-prenatal-ultrasound/). Your “vulnerability” to a health related disorder depends in part on the ability of society as a whole to react to the threat (the prevalence of autism is a threat to society as a whole), to government, neighbors and even non-profits.

There are many things the CDC is doing right in regards to autism prevalence rates; however, much more can be done. Conclusions from CDC studies, when available, are meant to be non-confrontational and lack in directives. We need the coordinated efforts of governments in order to promote research, follow the burden of the disease, provide for resolution in terms of conflicting studies/opinions/theories, truthful dissemination of information, and collect data using standardized measures. It is time to involve other international agencies.

2 responses to “How to follow the rising prevalence rates of autism: an epidemic or a health-related disaster?

  1. If the CDC is doing anything right in regards to tracking autism prevalence, it boggles my imagination as to what it could possibly be. The ADDM program changes states and locations every two years, they change the cities and counties within the state. There are no actual assessments of the 8-year-olds and at least 20% of the cases of autism are just inferences from school records where no clinician actually diagnosed the children. It seems farfetched the number could go from 1 in 88 to 1 in 68 in just two years without their being any artifact involved. You probably know a recent study came out (I forget the lead author) that stated the prevalence of autism has been stable for the past 20 years at 1 in 132. 21 million dollars a year is spent on the ADDM while persons with autism can’t get on disability, are not employed and a cause and cure are out of sight. Autism speaks lobbied for the ADDM and they have an interest in having the numbers as high as possible. The CDC’s ADDM program is a colossal waste of taxpayer money in my opinion.
    As far as declaring it a disaster, I don’t see how that can help, as the US attitude toward autism is a joke. Neurodiversity can get the name of the law changed so we no longer combat autism. They can advise the government on policy when one is 21 years old with no life experience at the time, another is a high school dropout. There have been five anti-cure autistics as public members on the IACC. The number of pro-cure autistics is zero. Neurodiversity got the name of the law changed. Why should we even consider an international response when we have such a poor national response in that a fringe movement like neurodiversity can even be taken seriously and those CDC prevalence studies are such a joke?

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    • The efforts of the CDC have been disappointing to say the least. They have done good work in other areas like tuberculosis, but not in autism. I think my post was as acerbic as I get while trying to be constructive. Thanks for the comments.

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