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Still Covering Up: the New Autism Speaks/JAMA Study of the Cost of Autism

British MoneyBy John Stone Money stack

"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.

Comments

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AussieMum

Perhaps I should be grateful being paid $59.00 (£33.04/(USA$55.46) a week from the Australian Government as a full-time carer for a severely Autistic, non-verbal, twelve-year-old.

I may be denied less money if I demand more!

Our Government is dealing with a "sickly" budget because of over spending in the wrong areas. Money should be directed to those who really need it, the most, and since Australia does not have a Vaccine Injury Compensation Programme then I consider my son's cause "who really need it, the most!"

Thanks for the article John.

Elizabeth Gillespie

jen

http://www.policyschool.ucalgary.ca/sites/default/files/research/emery-autism-costs.pdf

With increasing prevalence, this problem (and it is a problem) is not sustainable for families alone to cope with, say Dudley and Emery in their report. The report is very good in terms of estimating at least the caregiver costs realistically. The cost of caregiver time alone for an individual severely affected by autism is 5.5 million dollars more than a neurotypical individual.
90% unemployment is pretty high. Loss of wages for all these individuals was not looked at in this particular study but is an important part of the picture. And this is not a crisis?

John Stone

Hi Birgit

No, the human costs this article does not address. Seeing how this story was picked up by so many mainstream sources they are perhaps less indifferent to the financial devastation though still they won't be told the truth about it. This is just another convenient fiction.

John

Angus Files

And at school level everyone knows how they try to cut services, teachers, social work, and fail to keep accurate accounts of every disabled child in the UK.

So if they don't know how many kids have disabilities autism etc how can anyone ever do a study accurately.

This from the National Autistic Society 2013

Page 8

http://www.autism.org.uk/~/media/nas/documents/get-involved/campaign%20for%20change/count-us-in/count%20us%20in%20-%20report.ashx

Count us in: The impact of autism in Scotland

The lifetime cost for someone with autism ranges
from £3.1million to £4.6million depending on the
support they require.

MMR RIP

Birgit Calhoun

Those costs do not include collateral costs i.e. the emotional and monetary toll on parents and siblings. Parents usually are not able to pursue the careers they would have and the siblings often take a very different outlook on life, i.e. wondering if they will have to take care of the disabled person. That is not to say they are not going to. But it means that they have to think about it, and they often become depressed just thinking about how that plays out.

Science is pure.  People are corrupt.

The average salary in the UK is approximately £27000 per year, nearly £10000 of which is paid in tax, which equates to £1.35 million contributed to the economy over a working lifetime and £0.5 million in tax revenue. The study estimates that 90% of adults on the spectrum are unemployed, so if 2% of the population are unemployable it effectively takes over £500 per year out of the pocket of the rest of the population, and that is before any treatment or support services are funded.

The lost productivity from more common conditions such as ADHD, depression, obesity etc. may be even higher. Treatment costs will change with technology and are impossible to predict, but the economic ramifications of the modern plagues are hard to overstate, yet no cost predictions and policy adjustments have been made. Indeed, American children are coming of age with $50000 of debt passed down to them.

John Stone

Hi Cynthia,

Yes, half of the story is the present profusion - the other half is the former rarity. 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 indivual real cases by more that three times (on a breakdown of their own figures).

John

Cynthia Cournoyer

I have yet to see any data that counts how many autistic children are in each public school. Every child nowadays can probably point to at least one in every classroom. That's 1:26 about. That would be a true current count of children on the spectrum. Not, 1:68. There are some small schools with two classrooms filled with special education students, many on the spectrum. If we had a true, real-time count of the current attenders at public school (which is still not all), it would become very clear that these numbers are unprecedented.

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