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Adult Autism Data Fabrication in the United Kingdom Part 2

RabbitsRead Part 1 here.

By John Stone Missing adults

Amid continuing false claims regarding the historical incidence of autism by mainstream media plugged authors Steve Silberman, John Donvan and Caren Zucker AoA re-publishes a series of articles by John Stone, UK Editor, chronicling data abuse and fabricated adult autism numbers, which also impacted heavily on opinion in the United States. These articles document the official drive to paper over the catastrophe engulfing so many of our children. The second of these stories from June 2014 examines an Autism Speaks which purported to examine the costs of autism and its numbers in both the United Kingdom and the United States. One thing it does admit is that autism is a thing with immense financial costs – after that it goes seriously awry. If autism has always been with us, why the contortions.

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

"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.

Comments

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Grace Green

Hi John,
Yes, you may be right about these stats and how they collect them, as well as the removal of thiomersal. There are so many variables. The thought I've been having about my own difficulty in getting a diagnosis relates to something you wrote some time ago that there could be a connection with my father's profession (pharmacologist), thus pointing to a link with mercury as Dan and Mark unearthed in USA and the Kanner cases. Another possibility is the government has made such a mess of my life and my children"s that they are afraid to back down! Anyway, thanks for your articles - I always lap up any new information on UK and Scotland.
Grace.

John Stone

Hi Grace

There is very interesting point here that the rate does seem to have lowered for a bit (although still much higher than for older adults) among teens, which may be around the time of the of the temporary exclusion of thimerosal from the infant schedule (at least for the younger ones in that group). But you would expect the teen group to be more completely diagnosed than the younger group so it seems that things have got much worse. Another possibility I suppose is that it reflects some practice in the benefits system.

I am not sure why you would have trouble getting a late diagnosis of autism or Asperger Syndrome given the situation described in part one of this series - when they conducted the survey (admittedly in England) they were falling over backwards to hand out diagnoses. There's also been a lot of noise about the alleged hidden horde in Scotland. I suppose that one problem might be that if they made a serious effort to find cases they would undoubtedly find some but it might still help to demonstrate how relatively few they were, so it is better for them to leave the cases as notional (particularly as they don't have to pay for them).

Ed Yazbak

Tim Lundeen,

Thank you for your interest

Did you try replacing 2014 in the link below by 2013, 2012 etc
https://www.ssa.gov/policy/docs/statcomps/ssi_asr/2014/sect06.html

Please let me know if that does not provide you with the information you need.

I would love to see your analysis of the statistics

Thank you

Ed

Grace Green

Tim Lundeen, Thanks for these figures. I'm interested in the average number of teenagers with ASD. I was told by one psychiatrist who refused me an adult diagnosis that I couldn't have autism because I had felt better in my teen years. But these stats show a lower incidence in teens compared to both younger children and adults aged 18 to 25. I still think that the fact that I can't get a diagnosis when I know I have ASD is related to the false cases the UK has dreamed up for their adult stats. It's probably because my case, like Donald Triplett's, would show a connection with mercury poisoning. Cases like mine were not recorded at the time because the UK didn't have our Leo Kanner or Hans Asperger.

Tim Lundeen

@ed yazbak

Do you have the SSI information broken down by year?

Even the age groups on https://www.ssa.gov/policy/docs/statcomps/ssi_asr/2014/sect06.html are devastating to the claim that "autism has always been here, we just diagnose it better":

Age Group Autistics One-year age groups
5–12 92,648 11,581
13–17 38,365 7,673
18–21 39,807 9,952
22–25 32,747 8,187
26–29 15,446 3,862
30–39 9,385 939
40–49 1,765 177
50–59 1,013 101
60–64 219 44

The number of disabled autistic people has increased dramatically (by more than 250 times) in the last 60 years. Note that there is a clear incentive for older disabled people to get diagnosed, so that they can receive disability income. If there were really large numbers of disabled autistic adults, we would see that here.

(The third column is the total number of disabled autistics in that age group divided by the number of years spanned by the age group, so that you can compare groups with different age spans.)

John Stone

Thanks Ed,

So the horde remains well and truly hidden. Everyone continues to see the Emperor's invisible clothes thanks to the magic tailors Silberman, Donvan, Zucker and a host of "scientists" with phoney projections.

The fact is that problems of autism are hugely intractable, distinct and even relatively likely to draw benefit, but still no horde.

John

Ed Yazbak

Thank You John for these two detailed, impressive and much needed reports.

Thanks to Ray Gallup's efforts, we have recently been able to obtain and review the US figures for children and adults receiving Supplemental Security Income (SSI) benefits for autistic disorders.

In 2006, there were 84,217 individuals ages 5 to 64 receiving those benefits. That number near-doubled in 2011 to 173,946 individuals and reached 246,415 in 2014, the last year reported so far.

There were 122 individuals aged 60 - 64 on SSI in 2010 and 219 in 2014. There were 589 individuals aged 50-59 on SSI in 2010 compared to 1,013 in 2014.

More detailed information can be found at
http://www.ssa.gov/policy/docs/statcomps/ssi_asr/2014/sect06.html (tables 34 & 35)

There were obviously other individuals on the spectrum who were not receiving SSI benefits.

In 2010, the population of the United States was 308.7 million

John Stone

Hi Lindsay

Back in 2010 in a letter to Nature to which it refused publication Carol Stott and Lorene Amet pointed out that while the number of autism cases had gone up, the proportion of cases associated with Fragile X had gone down.

"Taking the first example – fragile X, associated with mutations at the FMR1 locus – is it true that many ASD individuals have FMR1 mutations?

"In the early 80s, when autism prevalence was estimated to be around 5 per 10,000 births (5), as many as 10% of ASD individuals were found to have fragile X (6). In 2005 by contrast, when autism prevalence is much increased, to around 1 in 150 (7), fragile X was encountered in less than 1% of the ASD population (8). In the last few years, in a group of 400 ASD children at the Autism Treatment Trust, only three (i.e. less than 1%) have a known genetic condition; one has fragile X, another has a mutation affecting NF-1 and a third one has partial trisomy of chromosome 15. "

http://www.ageofautism.com/2010/09/establishment-journal-nature-refuses-discussion-on-autism-gene-project-failure.html

The answer to your second question can be found in Table 1 of the JAMA paper. I don't think it includes loss of tax revenue but as I pointed out they discounted many of their figures for inexplicable reasons so these are not real figures - even if you total up their non-discounted figures these are still on the optimistic side.

http://archpedi.jamanetwork.com/article.aspx?articleID=1879723&utm_source=Silverchair%20Information%20Systems&utm_medium=email&utm_campaign=JAMAPediatrics%3AOnlineFirst06%2F09%2F2014

Lindsay McKeown

Bit off topic, I know, but are there similar studies showing the increases in the UK population of those born with chromosomal abnormalities?
Also wondering if the above figures include the cost to the families including loss of earning power. Or even the resulting loss of tax revenue et al to the economy.
To think of all the money that could have been spent on safety studies, eh?

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