By John Stone

"The present study seems to do two things: regard notional cases based on a half-baked theory of general prevalence as actual, but also underestimating costs of individual real cases by more than three times (on a breakdown of their own figures)."

There have been many news stories in the past days of  a study in the Journal of the American Medical Association - funded by Autism Speaks  - of the financial cost of autism in both the United States and the United Kingdom.  The Daily Mail notably reported that the calculated annual cost of autism in the UK of £32 billion ($ 51billion) was greater than the cost of “heart disease, cancer and strokes combined”. It might have seemed momentarily as if someone for once was dealing with the autism issue honestly. After all co-author Martin Knapp, London School of Economics professor, was co-author of a similar study in 2001 which estimated the cost to the UK as exceeding a mere £1 billion ($1.6 billion) .  That the scale of the problem might be 30 times worse now than thirteen years ago is something that many of us might have suspected. Unfortunately, what Prof Knapp seems to have discovered - rather incredibly - is that he just happened to have missed most of the cases back then. Already in 1998 (the year of the Wakefield Lancet paper) the UK's National Autistic Society had started to make out that there were in excess of half a million cases in the UK population but the 2001 paper properly ignored this assuming a prevalence of 5 in 10,000.

In the new study (table 2) we read that there are 196,489 autistic people in the UK of 18 or over with intellectual disability (ID) and 294,734 without ID.

The authors state:

“...Third,there is some controversy about current ASD prevalence. The prevalence estimates we used are lower than new figures from Peacock et al..or Kim et al…(1.5% and 2.6%, respectively). Although this does not affect our per-person costs, it can markedly affect the estimated total societal costs.We rejected the estimate of Peacock et al because it is based on healthcare claims data with no verification of the diagnosis. We rejected the estimate of Kim et al because it is based on data from South Korea and may not be applicable to the United Kingdom or the United States...”

The Kim paper is, of course, Autism Speaks’ outrageous study from the city of Goyang where apart from anything else more than three quarters of the positively screened cases were withdrawn by their families from the study before it was completed, but in both instances they are citing studies calculating autism incidence in children as a basis for prevalence in entire populations, which is a huge and unwarranted scientific leap.  With surreal precision the study posits the existence of 491, 243 autistic adults in the UK divided exactly 40:60% with and without ID. Unfortunately, there is no concrete data bearing this out. It would be remarkable if they could recover one tenth of the alleged adult cases from government data and even then most of them would be under 25. The non-existence of real data and the requirement for projection is what surely gives the game away. This would be a hugely dependent population, so why do we still not know they are there in administrative terms?

The other matter I cannot reconcile is the lifetime costs. The paper determines that the lifetime cost in the UK of a person with autism and ID is £1.5 million ($2.2m) and $2.44m in the US [added 26 June 2014]. Even in 2001 Järbrink and Knapp stated: “The lifetime cost for a person with autism exceeded £2.4 million” ($3.8m). But the new paper also gives a yearly cost for an autistic adult with ID in the UK as £86,981 (table 2) and £86,099 ($126,430 - table 4)  and £1.5m only amounts to about 17 years’ worth. Using the figures provided for childhood costs in Table 2 and a projected average lifetime of 67 years we get a grand total of £4,864,911 (about $7.8m):  more like it, perhaps,  but still I fear rather optimistic. The US lifetime figure for an autistic person with ID similarly calculated from table 2 is about $6m [added 26 June 2014]. This is our new autistic workforce. We ain’t heard nothing yet: the real financial tsunami is on its way.

John Stone is UK Editor of Age of Autism.