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UK Statistics Authority Bins Controversial 2009 Adult Autism Survey

UK binBy John Stone

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.

Comments

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Jake Crosby

My pleasure, folks. Please check out my new post at Autism Investigated about this: Crooked Hillary Swallows Sacked Autism Stats. http://www.autisminvestigated.com/crooked-hillary-autism-stats/

Best,
Jake

John Stone

seven years bad luck

It should be stressed, of course, that it was not luck at all, it was seven years bad government. It was evident from day one that things were mightily wrong with this paper, but the bureaucracy didn't care. Insel was particularly unfastidious about the studies he treated seriously providing they supported the policy - yet they always knew that it was an epidemic, and it couldn't be "genetic". His close buddy Francis Collins told Congress that in 2006.

http://www.ageofautism.com/2014/09/tomfoolery-over-the-cdc-whistleblower-insel-reacts-at-the-iacc.html

http://www.ageofautism.com/2009/11/iaccs-dr-francis-collins-gives-the-game-away-on-autism.html

This is what I wrote in the 2009 Collins article:

"So, in fact we have here not just one, but two startling admissions – not only that environmental factors are the cause of the rise in autism, but that autism is rising at all! Despite this parents are still fighting with the Institutes and other agencies for any recognition of either fact, exemplified by Katie Wright’s latest dispiriting report from the Interagency Autism Coordinating Committee (HERE). Indeed, just last month with the publication of the new autism figures Kathleen Sebelius, US Health and Human Services Secretary, was still uncertain whether autism was really rising and had no idea what might be causing it (HERE). Almost simultaneously a UK government agency was making false and fraudulent claims that the autism rates amongst adults and children were identical (HERE).
And so an interesting question arises. If Dr Collins knew three and a half years ago that the rise in autism was real - and that its causes were not genetic – and told a US Senate committee this, why has nothing at all been done in the interim by government agencies but prevaricate? Why is it so hard to address this simple issue?"

seven years bad luck

Seven years of false claims made on the back of this lousy survey. Seven years of transient bystanders to online debates walking away convinced that "autism has always been with us at current rates" who will never hear about the paper's downgrade and who will continue to spout the same argument. And how much funding was routed away from environmental autism studies in that seven years because of this survey? How many more children died or were maimed in seven years due to the use of this false defense?

Alessandro

Hillary Clinton? Jake, maybe Trump should have on endless loop the CNN footage when she claimed she had to run from the plane for cover under sniper fire when visiting Bosnia in 1996.

What a liar. See for yourselves:
https://www.youtube.com/watch?v=8BfNqhV5hg4

For NYT, Washington Post and other coverage search on "hillary clinton video airport landing under gunfire".

There are plenty of Hillary lies.

Bill even tried on her behalf to cash in on the autism communities' vote when she was trying to run for the Presidency:

“You do not want to bring your children into the world where we go on with the number of children who are born with autism tripling every 20 years, and nobody knows why,”

Bill Clinton said when supporting Hillary on the campaign trail.

Obama also jumped on the bandwagon at the same time because McCain who was also running started by raising the issue. Unlike Obama and Clinton, McCain took a real risk being the first to side with those concerned about the increases in children with autistic conditions. So McCain was likely the only genuine politician who raised the issue from conviction and not to lie about intentions to win votes.

But with Obama, like the rest of his Presidency he has played more golf than Tiger Woods - Barak Obama - the do nothing President.

Linda1

Thank you Jake.
From your link - what else Clinton has planned for autism research - nothing about environment:

"Significantly increase funding so that the government can invest more in autism research. Clinton recently announced the first phase of her plan to significantly increase government investment in biomedical research: her initiative to address Alzheimer’s disease. She will build on that initiative by increasing research funding across the board. This will make a vital difference for a range of autism-related research, from studies that improve the quality of patient services for people with autism, including participatory action research on subjects like employment and housing, to more basic research that identifies genetic markers, maps child brain development, and generates new insight into the workings of the central nervous system. This basic research will draw on work across sectors by building on what we are learning from bold new private and non-profit efforts on genetic mapping, including the MSSNG genome sequencing project and open data platform, the Simons Variations in Individuals Project (VIP), and the NIH Autism Sequencing Consortium, teaming up with their researchers to deepen our understanding of autism."

John Stone

Thank you Jake for pointing that out.

As matter of fact the survey did not tell us anything at all about the needs of the participants. It purported to tell us how many cases there were in the population but manifestly that figure was fabricated. Of course, one day in the not too distant future it will rise to 1 in 100 and then it will rise well beyond it. It does emphasise how central this piece of malfeasance was on a global level. Obviously, it is as bad as Thompson.

Jake Crosby

Crooked Hillary's campaign said the survey provided "valuable information regarding the needs of adults on the autism spectrum that has helped them craft and improve services." https://www.hillaryclinton.com/briefing/factsheets/2016/01/05/hillary-clintons-plan-to-support-children-youth-and-adults-living-with-autism-and-their-families/

John Stone

Alessandro

Everything points to using any means (and none) to home in on the figure of 1 in 100. You may recall that between the publication of the 2007 adult psychiatric morbidity survey (which stated that the data collected for "Asperger Syndrome" would be published seperately) was the Eurekalert press release from the University of Leicester (academic home of Prof Brugha):

"Care services Minister Ivan Lewis announced an additional investment of £500,000 for Government research into the numbers of adults with autism and their specific transitions needs. This prevalence study will inform the first ever Government strategy on adults with autism and Asperger's syndrome.

"The number of children with autism is as high as 1 in 100 (according to studies by Prof Howard Meltzer of the University of Leicester and Prof. Baird's 2006 study). The new prevalence study now underway will give the first ever accurate picture of how many adults have the condition..."

http://www.eurekalert.org/pub_releases/2008-05/uol-uol050908.php

But in 2009 there was no new data, only the data from the 2007 Asperger survey, relabellled Autism Spectrum Disorder with the numbers blatantly massaged to resemble the figure for children in 2004. The press release goes on:

"Professor Brugha is Director of Research, Department of Health Sciences, University of Leicester and Honorary Consultant Adult General Psychiatrist, Leicestershire Partnership NHS Trust. He operates an NHS assessment clinic for adults who may have Autism Spectrum Disorder and liaise with adult mental health services throughout Leicester and Leicestershire, also providing training to professional staff and teams.

"His area of research is psychiatric epidemiology in adulthood. He is also currently developing and testing methods for the prevention of depression.

"Professor Brugha said: "This will be the world's first ever study looking at the number of adults in the community who have an autism spectrum disorder. "

But while, of course, there was never any mention of the political spectre haunting the UK Department of Health this only lasted until the 2009 survey was launched by the National Health Service, the most egregious report perhaps being by Sarah Boseley health editor of the Guardian crassly entitled "Autism is just as common in adults, so MMR is off the hook".

I submitted the letter below to the British Medical Journal yesterday.

-----------------------------------------------------------

The data in the study cited (1) by Brugha et al (2) is derived from a 2009 NHS publication which was published as National Statistics (3). However, according to government documents published on line in May 2016 (4, 5) the UK Statistics Authority have downgraded these statistics to the status of "experimental statistics". The survey published by the NHS and funded by the Department of Health was claimed by these bodies at the time to be evidence that measles, mumps, rubella vaccine (MMR) had not affected the rate of autism (6).

Apart from the overtly political context of its publication criticism of the methodology include questions over the correct scoring the diagnostic autism test ADOS-4, the fact the it is not a stand-alone test, a non-transparent weighting method that inflated 19 "cases" to 72, the substitution of the category "Autistic Spectrum Disorder" for "Asperger Syndrome" between the publication of the original 2007 psychiatric morbidity survey (7) and its appendix (3) in 2009, and the ethical issue of whether members of public were told that they were to be assessed for "morbid" conditions.

(1) Brugha TS, McManus S, Bankart J, Scott F, Purdon S, Smith J, Bebbington P, Jenkins R, Meltzer H. Epidemiology of autism spectrum disorders in adults in the community in England. Arch Gen Psychiatry 2011 May;68(5):459-65.
(2) Brugha TS, McManus S, Bankart J, Jenkins R, Smith J, Scott F, The proportion of true cases of autism is not changing. BMJ. 2014 Jun 11;348:g3774. doi: 10.1136/bmj.g3774.
(3) Brugha TS, McManus S, Meltzer H, Smith J, Scott FJ, Purdon S, Harris J, Bankart J, Autistic Spectrum Disorders in adults living in households throughout England: Report from the Adult Psychiatric Morbidity Survey 2007, http://digital.nhs.uk/catalogue/PUB01131/aut-sp-dis-adu-liv-ho-a-p-m-sur-eng-2007-rep.pdf
(4) Letter from Ed Humpherson to Clifford Miller, https://www.statisticsauthority.gov.uk/wp-content/uploads/2016/05/Letter-from-Ed-Humpherson-to-Mr-Miller-230616-1.pdf
(5) UK Statistics Authority, Assesment of the compliance with the code of practice for official statistics:, National Study of health and Wellbeing: Adult psychiatric morbidity survey 2007.
(6) Sarah Boseley, Autism is just as common in adults, so MMR is off the hook, https://www.theguardian.com/society/2009/sep/22/autism-rate-mmr-vaccine
(7) Bebbington P, Brugha T, Wessely S etc. Adult psychiatric morbidity in England, 2007, http://digital.nhs.uk/catalogue/PUB02931/adul-psyc-morb-res-hou-sur-eng-2007-rep.pdf

Alessandro

There is much more to this. Asperger's Syndrome was not supplanted by "Autistic Spectrum Disorder".

When the controversy over this study blew up the researchers just turned around and claimed the study was for all ASD's. No if's and no but's. They just made the claim knowing it was not true.

But the study was always directed solely at Asperger's.

So when researchers do that and publish peer reviewed papers making research claims they know are untrue what is that called?

And when reading more remember these are supposed to be leading autism experts so if they say something untrue it cannot be because they made a mistake.

This is what they claimed publicly in 2010 via the UK's NHS and it was a knowingly made entirely false claim:

The initial Adult Psychiatric Morbidity Survey (APMS2007) report made reference to Asperger syndrome specifically, rather than Autistic Spectrum Disorder (ASD) generally. However, to be precise and as described in the Autism report Autism Spectrum Disorders in adults living in households throughout England - report from the Adult Psychiatric Morbidity Survey 2007, the screening tool used in phase one (the Autism Quotient) and the diagnostic assessment used in phase two (the Autism Diagnostic Observation Schedule) are both designed to pick up on the full range of ASD and were not able to differentiate between subtypes. We apologise if any confusion was caused.

What's not true?

They did not use the Autism Quotient. They cobbled together a questionnaire and called it AQ20 which they later confirmed in a peer reviewed paper was useless.

The real Autism Quotient is an established series of 50 questions. Their version had 20 and more importantly was not the Autism Quotient. So what they claimed publicly is untrue.

They did not use the Autism Diagnostic Observation Schedule. That has four modules [now it has 5 but then it was 4]. Each module is for people with different autistic characteristics from non-verbal children to verbally fluent adults.

They did use part of ADOS module 4 but that is only for verbally fluent adults and not for the entire spectrum. And they executed the study to deliberately omit two of the ADOS 4 scores needed to qualify for Asperger's.

That was how they included adults who did not have Asperger's and so made the numbers bigger. Having made the numbers bigger they then also claimed that their design only found one in four adults with Asperger's. This multiplied the numbers a second time over by four times.

It is also not true that use of ADOS means it is not possible to differentiate between subtypes. That is quite plainly false.

All ADOS modules when properly used as part of the diagnostic instruments employed in the standard approach to diagnosis will enable the clinician to differentiate between types of autistic condition.

So what do you call researchers who spend the equivalent of US$8 million of UK taxes to pay their mortgages making claims like that?

Patience (Eileen Nicole) Simon

John, Thank you for re-reviewing this absurd survey. How has so much bad science gained prominence in the field of autism research?

My background is in science, but I am now participating in writers' workshops to try to learn how to better communicate all that I have learned in the last 50+ years. In the workshop I attended this afternoon, someone asked, "What are the accepted views of experts in the field of autism research?"

Experts? How can the defining "traits" of childhood autism have gone unrecognized as neurological signs: language disorder, repetitive movements, and diminished level of consciousness (or social awareness)?

I can point to increasingly poor research on the language disorder over the decades. How can experts miss the fact that "pronoun reversal" is part of the echolalic speech disorder? Pronoun reversal is part of the autistic child's use of phrase fragments. Most of us parents recognize this. But the "researchers" are out on a limb with dumb theories like deictic shifting.

If there were any true experts in autism research, they would not be so unwilling to engage in conversations with parents. Kanner learned the meanings of "metaphorical speech" only by asking parents what their children's strange sayings meant.

Attempts to deny the huge increase in autism beginning in the 1990s are silly.

 Hera

It is nice to see actual acknowledgement of how poor the study was; pretty much all those talking points were already covered here, as John says, more than 7 years ago, I think.

since I am kind of cynical, it seems there are two main reasons to trash this study.

1.The new numbers of 1 in 68 children with autism actually prove that the adult autism rate is far lower, so the study is now proving the exact opposite of its presumed intent.
In which case, are we to expect a new , equally flawed study managing to extrapolate adults without diagnoses to somehow create a new adult rate of 1 in 68? of course given that more highly vaccinated children are now becoming adults, I expect the "real" adult rate is indeed getting higher.

Another more encouraging possibility is that as now we are starting to see all these vaccine injured children turning into adults needing life long care, someone has realized that we need to address the problem in some way, and accurate figures may actually be needed.

John Stone

Thanks Anne and Everybody,

The fact is that we knew a lot about what was wrong with this from day one nearly seven years ago: the dodgy diagnostics, the absurdly small and inflated number of cases, the political opportunism. Not only was it openly claimed that the data showed that that MMR had no effect on the autism rated, within in a week or two Kathleen Sebelius, HHS Secretary, announced that the autism rate in US children was 1 in 100: the whole thing seemed carefully synchronised. Nothing to see here folks, move along please...

https://www.youtube.com/watch?v=5NNOrp_83RU

Jeannette Bishop

"Experimental statistics" seems a bit euphemistic in light of the definition cited. I'll euphemistically assign the use of this survey by officials such as Insel as susceptibility to "wishful thinking."

"Wishful thinking" is defined to be whatever major shareholders of certain major corporations wish to be thought by the rest of us about reality, often completely counter to actually understanding reality and dangerous to our health.

False scientists make me laugh

The very idea was a joke. A bad joke.

Anne McElroy Dachel

Thank you, John. The absurd claim that just as many adults as children have autism is ridiculous to any thinking person. We are living in a world completely unprepared to deal with the growing number of neurologically damaged young adults---people who couldn't possibly answer the lame questionnaire that supposedly found a one percent adult rate.

The whole survey idea was a desperate attempt to reassure the public that nothing is wrong. They produced a phony definition of autism and applied it across the population. The press hailed it as proof of no real increase, no link to vaccines, and no problem with autism.

Meanwhile the destruction continues, and the clock is ticking on a world left to deal with a massive population of chronically ill and disabled people.

Anne Dachel, Media

Grace Green

This is a great step forward. The truth will out, especially with people like you, John, Angus, and I'm sure others behind the scenes keeping on at them, and not letting them away with it.
I have long thought that adults like me with Aspergers are those who, had we been born a generation later, would have had the autism of today's children. We are invisible, until it suits them to use us as statistics. But, as you have said before, 19 is a ridiculous number to extrapolate to the whole population, even if the study itself had been scientifically conducted. Lets hope this now has the desired effects.

Hans Litten

Ronald . This is our work that has achieved this (fair play JohnDS) .

angus files

Thanks John September not far away lets hope that Scotland reports what it sees and not through the Insell looking glass. But hey! its the new norm..it was always like this ..not!

MMR RIP

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