In a remarkable move the influential 2009 survey which purported to show similar rates of autism in adults to those is children, and has often been criticised in these columns, was officially downgraded to the status of “experimental statistics” by the Statistics Authority in May according to British government documents (here and here). The British survey which was published as National Statistics and subsequent associated studies were frequently cited as evidence that autism was not on the rise by Thomas Insel, until last year director of the US National Institute of Mental Health. The survey when published in 2009 was advertised by the UK National Health Service as showing that the MMR vaccine had not affected autism rates.
Among the criticisms of the survey was that the diagnostic assessment was incorrectly scored, was not a stand-alone tool for diagnosing autism anyway, that abstruse and arcane weighting methods were used to inflate the 19 identified “cases” to 72 in order apparently to obtain a 1% rate which matched the National Statistic for children as last recorded in 2004/5 . The ground work for the survey was carried out in 2007 as part of a national mental health morbidity survey which was to include Asperger Syndrome as one of the categories, but by 2009 Asperger Syndrome had been supplanted by Autistic Spectrum Disorder. One serious anomaly is whether genuine ASD cases would even have been capable of taking part in survey. There is also a question mark over whether the data was properly obtained: participants were not told that they were being assessed for morbid conditions.
The team responsible for the 2009 survey led by Traolach Brugha published at least five related papers listed on Pubmed, including one last month (which was widely circulated last month by the National Autistic Society) after the National Statistics Authority ruling. A new survey is imminently expected from the same team based on data collected in 2014. It remains to be seen whether it fares any better.
According to data provided by the Scottish executive as of last September 1 in 58 children had a diagnosis of autism (11,722 ASD cases out of 680,007pupils), however the data will be incomplete since many children will not yet have received a diagnosis and the numbers will be much higher among younger children, since the figures have been rising steeply year on year.
John Stone is UK Editor for Age of Autism.