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Thursday, December 22, 2016

Lack of Data: The Case of Germany

Uncertainty is a major theme of The Politics of Autism. Here is how I start chapter 3:
If we can land a man on the moon, why can’t we cure autism? Frustrated parents may ask that question, remembering that when John F. Kennedy committed the United States to go to the moon, NASA scientists and engineers figured out how to get there. Ever since Neil Armstrong stepped off the lunar module in 1969, politicians have held up the Apollo project as a model for solving all kinds of problems. But autism is not rocket science. Contrary to the usual meaning of that expression, I hardly suggest that autism science is simple; rather, it is more puzzling than rocket science.
When the moon program was getting under way, there was consensus about the fundamental terms and facts. Although the engineering details were challenging, the basic math and physics behind the mission dated back to Isaac Newton. Autism is different. As we have already seen, it is a contested concept with many uncertainties. Just picture an Apollo program in which experts saw different kinds of moons in different parts of the sky and were not quite sure about the laws of motion.
Specifically, we lack data both on trends in the United States and prevalence in other countries. Christian J Bachmann, Bettina Gerste, and Falk Hoffmann have an article in Autism titled "Diagnoses of autism spectrum disorders in Germany: Time trends in administrative prevalence and diagnostic stability." Note the first line of the following abstract:
For Germany, no data on trends in autism spectrum disorder diagnoses are available. The primary aim of this study was to establish the time trends in the administrative prevalence of autism spectrum disorder diagnoses. The second aim was to assess the stability of autism spectrum disorder diagnoses over time. We analysed administrative outpatient data (2006–2012) from a nationwide health insurance fund and calculated the prevalence of autism spectrum disorder diagnoses for each year, stratified by age and sex. Additionally, we studied a cohort with a first-time diagnosis of autism spectrum disorder in 2007 through 2012, investigating the percentage of retained autism spectrum disorder diagnoses. From 2006 to 2012, the prevalence of autism spectrum disorder diagnoses in 0- to 24-year-olds increased from 0.22% to 0.38%. In insurees with a first-time autism spectrum disorder diagnosis in 2007, this diagnosis was carried on in all years through 2012 in 33.0% (The International Classification of Diseases, Tenth Revision diagnoses: F84.0/F84.1/F84.5) and 11.2% (F84.8/F84.9), respectively. In Germany, like in other countries, there has been an increase in the administrative prevalence of autism spectrum disorder diagnoses. Yet, prevalences are still lower than in some other Western countries. The marked percentage of autism spectrum disorder diagnoses which were not retained could indicate a significant portion of autism spectrum disorder misdiagnoses, which might contribute to rising autism spectrum disorder prevalences.