Autism and Wandering: Constant Vigilance
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Not Allowed On Pubmed Commons: Reply To Prof Brugha On The UK Adult Autism Survey

Terry BrughaBy John Stone

Later this week the United Kingdom National Health Service is scheduled to publish a new set of adult psychiatric morbidity statistics, including autism, based on data collected in 2014. Below is the text of my response to Prof Traolach Brugha lead author of the 2009 UK adult autism survey and subsequent connected papers taken down from Pubmed Commons, after a complaint, three days ago. Clearly these are issues which deserve discussion and belong in the public domain. We would still be grateful to Prof Brugha if he would respond here if not on Pubmed. In an earlier reply to me on Pubmed Prof Brugha wrote:

Interested readers will find more information on the basis for the scoring of the diagnostic autism test ADOS-4 and evaluation of its use in a validation study published since (Brugha et al 2012). This additional research was required because the original scoring of the diagnostic autism test ADOS-4, at that time, had only been tested in teen age and young adult patients attending specialist US autism clinics; it had never been validated in the survey population, a random sample of adults and elderly people living in private households throughout England. The resulting validated scoring was different. We plan to publish more details of this.

This discloses the fundamental problem that Brugha and colleagues failed to use a standard method for diagnosing the “cases” in the survey (although they originally claimed they did) and have no real way of validating the method used a whole decade later. Here Brugha also introduces the red-herring that the diagnostic tool was developed in the US (though long in use in the UK as well), although it follows a letter in which they contest that their evidence has shown that autism is not only not rising in the UK but also not  rising in the US. The 2009 survey followed on a decade of inflated estimates by the UK National Autistic Society and the Department of Health of the numbers of adult autistic people in the population at large. The political agenda behind this was manifest in 2009 at the National Health Service launch of the survey when Sarah Boseley reported in the GuardianAutism just as common in adults, so MMR is off the hook'.

I am grateful to Prof Brugha for his response of 23 August.   The peer reviewers seem not to have noticed the missing the ADOS data?  Two of three of the ADOS Module 4 scores are missing from the from dataset provided to the NHS Information Centre for Health and Social Care by NATCEN [1].  
It seems inappropriate to claim a calibrated diagnostic instrument like the ADOS has been applied when it has not been.  


The authors reported [2] that they applied Module 4 of the Autism Diagnostic Observation Schedule [the ADOS].  It seems not to have been followed.

The ADOS Module 4 provides for and requires the use of all three Module 4 scores in classifying each case.  If the ADOS had been applied, the three Module 4 scores for each case would be in the dataset.  They are not there.  

The dataset contains only one of three of the ADOS scores required for each claimed  “case”.  Omitting two of the three inevitably includes as “cases” individuals whose scores were below the required thresholds of the ADOS.

I have not been able to find a statement by the authors that they abandoned two of the three Module 4 scores, nor have I been able to find an explanation.  If there is one, perhaps Professor Brugha might be kind enough please to provide a reference by document, page and paragraphs of a publication by the authors reporting that deviation from the ADOS and the reasons for it?

Module 4 does not apply to lower functioning non verbally fluent cases and is not applicable for use in their diagnoses [3].  Thus the study could not cover all adults across the autistic spectrum in any event.

Professor Brugha appears to proffer a reason for the change of the term “Asperger’s Syndrome” to “ASD” in 2009.  He suggests it was done in 2009 because in 2013, [four years after the statistics were published in the UK], the American Psychiatric Association did not include the term in their diagnostic manual for America.  The rest of the world however in 2016 appears to still to use “Asperger's Syndrome” which appears in ICD-10-CM Diagnosis Code F84.5.

And what of the 13 missing potential cases omitted without mention by the authors? The authors reported [after the event] that they relied solely upon the >=10 ADOS Module 4 cut-off [4].  Regardless of their reasons the ADOS Module 4 was not applied yet the authors claimed to have applied it.   

32 cases in the dataset are above the ADOS Module 4 combined score minimum cut-off. 13 omitted cases have a combined score meeting the cut-off of >=7 and <10.      [For a verbally fluent case on the autistic spectrum the minimum combined score cut-off is >=7.  For a verbally fluent case of autism the combined score cut-off is >=10.]  [5].

These were not diagnoses using the ADOS and no claim to that effect should have been made.
Additionally what the authors reported was:

“The recommended threshold of a score of 10 or more on the phase two ADOS assesment was used to indicate a case of ASD.” [6]

The ADOS recommended combined score to qualify as a potential case was and remains >=7 for autistic spectrum disorder.  The >=10 threshold is used to indicate a case of higher functioning autism.

From what Professor Brugha says here it is clear that the method of diagnosis he and his colleagues employed is unique and was unvalidated at the time [which is obviously the case].  He also thereby confirms it still has not been validated 10 years later.  Aside from obvious potential author bias, in science researchers do not validate their own work.  The lack of independent validation of the authors’ methods is not corrected by publication of a paper by the same authors claiming the method was valid.  

Scientific peer review occurs when many other teams of researchers attempt to repeat and reproduce the same work independently thereby either supporting or falsifying it.

Journal “peer review” is not scientific peer review. It does not validate authors’ claims.  It is a modern development of questioned value including amongst the ranks of leading journal editors: “the practice of peer review is based on faith in its effects, rather than on facts.” [7].  It is effectively a method of vetting papers for publication, whether valid or not.  

This also by implication confirms the results are not now and were not then comparable to the internationally accepted methods of diagnoses employing over two decades diagnostic instruments including the ADOS.  As the statistics are not comparable to any other diagnoses under the ADOS, they do not seem to be support for the proposition that “The proportion of true cases of autism is not changing”.  

It is unsurprising therefore that the UK Statistics Authority’s May 2016 Assessment Report of these statistics [8] stated [in a diplomatically British way]:

“…. HSCIC might have helpfully labelled these statistics as ‘experimental’. …. HSCIC might consider ….. whether it is appropriate to label the statistics as ‘experimental’ until the fitness for purpose and robustness of the outcomes can be determined ...”

Even if the ADOS had been followed, which it had not been, Module 4 cannot be used for diagnosis across the full autistic spectrum.  Module 4 is for verbally fluent adults and adolescents.  It is not for those not verbally fluent.  The study by design could not identify the full range of Autistic Spectrum Disorder [ASD] but only higher functioning cases which are primarily Asperger’s Syndrome.  

A later study was commissioned, paid for out of public funds and published in 2012 to include lower functioning cases [9].  The outcome was a different prevalence figure.  Accordingly, the proposition that “The proportion of true cases of autism is not changing” is confounded as the proportion changed just by carrying out a further study.



The ADOS is also not a stand-alone diagnostic instrument so even if it had been followed, it would still not have been sufficient.  Diagnosis requires use of the Autism Diagnostic Interview–Revised [ADI-R] and the ADOS algorithm criteria together with the application of clinical judgement [10].  The ADI–R and the ADOS alone are less reliable in detecting more subtle cases of autism-spectrum condition. [11]  The ADI–R provides a cutpoint for classic autism [12], [13] which are predominantly non verbally fluent cases.  Those are cases which the ADOS Module 4 does not address.  Professor Brugha’s team’s efforts were and could only have been for verbally fluent higher functioning participants and not the full range of ASD.

And then there is the officially published “correction” about the scope of the study [14] which some may consider misleading:

“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.”

It is inappropriate for the authors to claim in the “correction” that the Autism Diagnostic Observation Schedule was used.  It was not.  That is apparent from the evidence already cited above and it even if it had been applied Module 4 is insufficient for the task.

It also seems inappropriate for the authors to claim in the “correction” that the Autism Quotient was used. It was not. The authors created their own short series of 20 questions and called it "AQ-20".  It is not the Autism Quotient.  It is not accepted nor recognised nor proven as a screening tool. The Autism Quotient in contrast is a set of 50 questions which is part of a series of diagnostic tools and instruments which have been calibrated to achieve consistency in identifying cases and in diagnoses.  
In addition the authors confirmed AQ-20 was not fit for its purpose as a screening tool stating "The AQ-20 was only a weak predictor of ADOS-4 cases." [15].  So not only was the Autism Quotient not used, what was used in its place did not work.  That also appears to have had implications for weighting the resultant data.

The authors’ study seems also not "designed to pick up on the full range of ASD" as is apparent from the evidence already cited above.

The claim the ADOS is "not able to differentiate between subtypes" is inappropriate.  The cut-off are used as an aid for that purpose.  Had the ADOS been used appropriately, the 19 cases scoring >=10 would have been indicative of possible higher functioning autism cases.  The other 13 cases scoring >=7 and <10 would have been indicative of possible Asperger’s Syndrome cases.

Of course, the ADOS on its own is not a standalone diagnostic tool in any event.

These appears to have been was no ethical approval granted for the original survey and interviews of adults to cover the full autistic spectrum.  Ethical approval was sought expressly for and then granted for a study solely of adults with Asperger’s Syndrome [16].  

An application to amend was made for an extension to include people with learning disability.  [17]  It appears that was not followed through and was not included in the published results.  Accordingly, the published statistics were of adults with higher functioning autistic conditions and not across the ASD spectrum.  It seems inappropriate for the authors to have suggested the contrary.

The later 2012 published study [referred to above] included lower functioning cases and the outcome was a different total prevalence figure across the two studies.  

As the departures from the standard methods show this still leaves the original [2007] study as not being of verbally fluent adults with Asperger’s Syndrome under the established methods - which methods include the application of the ADOS.  

The published statistics appear to be, as Professor Brugha now confirms, an experimental study employing unvalidated methods, save for the authors’ claims after the event to have validated them in the same study in which they were used.  

The authors are asked to provide please a description of the weighting scheme.  There appears to be none published.  The references Professor Brugha cites do not address the issue.  If Professor Brugha believes that to be incorrect perhaps he might specify by document, page and paragraphs where such a description can be found.  It would assist if the development of the weighting scheme was set out with a chronology of when and how it was developed.

The method for weighting of data should have been determined and set out in advance and not after the data has been collected.  The failure of the “AQ-20” as a screening tool to predict the most likely cases will however have resulted in a predetermined weighting scheme being unlikely to be reliable. If the AQ-20 had been expected to identify about 80% of potential cases, it failed to achieve that.  Weighting based on such an expectation would correct for the 20% not selected for interview. 618 participants were screened for interview using AQ-20 from approximately 7400.  So an overall weighting factor above about 1.25 might be higher than would be expected in such a circumstance. Whilst the mean weighting was approximately 3.8, each case was allocated a specific weight given to a precision of two decimal places, totalling 71.64.  No cases have the same weight aside from two and the range of weights is wide from 19.04 to 0.68:  19.04, 11.09, 6.31, 4.75, 3.85, 3.41, 3.33, 3.28, 2.22, 2.22, 2.17, 1.93, 1.55, 1.43, 1.3, 1.18, 1.07, 0.88, 0.68.

It also seems questionable ethically and lawfully to obtain sensitive personal medical data by telling participants that they are taking part in a general “health and wellbeing” survey when in reality they are being assessed for having specific mental health disorders.  That appears to lack the necessary informed consent.  It seems potentially not compliant also with legal requirements to protect sensitive personal data.  

Professor Brugha appears quick to suggest there is no increase in ASDs based on a study of 19 cases – his own – which appears less than robust.  And at the same time, whilst presenting the impression a diagnostic instrument, ADOS, was applied in that study, it appears that it was not.  What was applied is a substantially different regimen which has not been validated by any other researchers.  ADOS in contrast has been in extensive use internationally and has been developed and calibrated over many years.  The argument that ADOS can be supplanted with a new unique and substantially untested experimental approach because ADOS has not been tested on UK adults seems unconvincing.

John Stone is UK Editor for Age of Autism.
    
REFERENCES


[1]  Freedom of Information Reference NIC-40939-Y2QCZ 17/3/2010
[2]  eg. Page 16. Autism Spectrum Disorders in adults living in households throughout England Report from the Adult Psychiatric Morbidity Survey 2007 Section 2.2.2 Assessment of ASD. C Phase two assessment: Autism Diagnostic Observation Schedule (ADOS)
[3]  page 208 “Algorithms and Use of the ADOS-G for Classification” of Lord et al [2000] The Autism Diagnostic Observation Schedule–Generic: A Standard Measure of Social and Communication Deficits Associated with the Spectrum of Autism.  Journal of Autism and Developmental Disorders, Vol. 30, No. 3, 2000.
[4]  eg. Page 13. Autism Spectrum Disorders in adults living in households throughout England Report from the Adult Psychiatric Morbidity Survey. 2007: Chapter 2 Autism Spectrum Disorders. Summary Diagnostic.
[5] “Diagnostic Algorithms and Use of the ADOS-G for Classification” of Lord et al [2000] The Autism Diagnostic Observation Schedule–Generic: A Standard Measure of Social and Communication Deficits Associated with the Spectrum of Autism.  Journal of Autism and Developmental Disorders, Vol. 30, No. 3, 2000.
[6] Page 13. Autism Spectrum Disorders in adults living in households throughout England Report from the Adult Psychiatric Morbidity Survey. 2007: Chapter 2 Autism Spectrum Disorders. Summary.
[7] Dr Richard Smith*. (2006) Peer review: a flawed process at the heart of science and journals. J R Soc Med April 2006 vol. 99 no. 4 178-182  * former Editor-in-Chief BMJ
[8] Assessment Report 326 - National Study of Health and Wellbeing in England - Adult Psychiatric Morbidity Survey 23 May 2016
https://www.statisticsauthority.gov.uk/publication/national-study-of-health-and-wellbeing-in-england-adult-psychiatric-morbidity-survey/
Accessed 22 Sept 2016
[9] Estimating the Prevalence of Autism Spectrum Conditions in Adults - Extending the 2007 Adult Psychiatric Morbidity Survey [NS]
Publication date: January 31, 2012
http://digital.nhs.uk/catalogue/PUB05061/esti-prev-auti-ext-07-psyc-morb-surv-rep.pdf
Accessed 22 Sept 2016
[10] Baron-Cohen et al (2009) Prevalence of autism-spectrum conditions: UK school-based population study. Page 502 The British Journal of Psychiatry (2009) 194, 500–509. doi: 10.1192/bjp.bp.108.059345
[11] ibid
[12] ibid citing Lord C, Rutter M, Le Couteur A. Autism Diagnostic Interview – Revised: a revised version of a diagnostic interview for caregivers of individuals with possible pervasive developmental disorders. J Autism Dev Disord 1994; 24: 659–85.
[13] ibid citing Bishop DV, Norbury CF. Exploring the borderlands of autistic disorder and specific language impairment: a study using standardised diagnostic instruments. J Child Psychol Psychiatry 2002; 43: 917–29.
[14].  NHS Digital - Adult Psychiatric Morbidity in England - 2007, Results of a household survey [NS] Publication date: January 27, 2009
http://digital.nhs.uk/pubs/psychiatricmorbidity07
Accessed 22 September 2016
[15] 2012 Brugha et al Validating two survey methods for identifying cases of autism spectrum disorder among adults in the community Psychological Medicine, Cambridge University Press
[16] 21/04/2006 letter NATCEN to Royal Free Hospital and Medical School Local Research Ethics with Research Ethics Application.
[17] NATCEN Email 04 June 2008 with the 4th Notice of Substantial Amendment and documents Amendment Request Ref 06/Q050 1/71

Comments

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Reader

Jeanne J and Susan, I can promise you that anyone in education knows that the numbers of learning disabled and those with autism started becoming obvious in the late eighties. By this point and somewhere in between then and now, things are so out of control that it's mind boggling. We could hardly scrape together an army any more.

Jenny Allan

John-OOPS! -and I thought Pub Med were showing some integrity!

John Stone

Jenny

I fear that it was only my comment that was removed from the Pubmed website after a "complaint".

Jenny Allan

Thank you John for your meticulous research and lobbying. Prof Brugha's 2009 UK adult autism survey, is an affront to science. He has allowed himself to be 'bought' by the medical/political establishment. These days so called 'surveys' are designed to 'discover' pre-determined findings. This has nothing to do with science and everything to do with propaganda and spin.

Prof Traolach Brugha should be ashamed of himself. I'm very pleased his flawed 'survey' and subsequent connected papers were taken down from Pubmed Commons,

John Stone

Just to note the historical sequence. The UK National Autistic Society started to float a near 1 in 100 figure for the adult population in 1998, the Department of Health statistic for children had risen to 1 in 100 by 2005 but this was at least x5 a decade before, but then they stopped counting - they knew it was going to go higher because of Baron-Cohen's 2004 survey (but only published in 2009 after much controversy) which showed that for every 3 cases diagnosed there were 2 others not yet diagnosed. Then Brugha et al chime in with their adult 1 in 100 survey in 2009.

However, while Department of Health stopped counting the children in 2004 it has been necessary to keep track in education. So, for example, in Scotland the level has risen to 1 in 58 in 2015, but this will be much higher in younger children (the rate goes up every year but even then not all will yet have received their diagnosis). The message is that the DH should quit their bland and unconvincing reassurances and get to the bottom of what is happening (supposing they don't know).

Jeanne J

Susan,
I am an occupational therapist that has worked in special education since 1980. You really have hit the nail on the head. Whereas the medical community was asleep at the wheel when autism was exploding in the schools, we in the special education community - special educators, and all related service providers - first noticed the influx of children labeled PDD-NOS in the late '80's. By the early '90's, it was quite unmistakable the number and spectrum of children with autism had been increasing in both our separate public school and the regular schools. This was long before the so-called expansion of the spectrum in 1994 that the talking heads use as the reason for the increase. It also should be noted that this occurred at the elementary level - not secondary. If someone wanted to really design a longitudinal study on the real increase in autism, what they should do is look at these increases:
-year and # of classes for ASD added on since 1977 (education of all children act was first implemented)
-number of OT's, PT's, Speech Paths, Behavior specialist added yearly.
-yearly changes in curriculum to support children with autism in classrooms, including ABA-style instruction, visual supports, behavior supports, voice-output devices.
-yearly increase in number of sensory supports added into all classrooms to support students.
I could go on. But really, since our alphabet soup agencies (CDC, AAP, NIH, HHS, MOUSE) can't seem to figure out if there is a real increase, there really are TONS of other societal institutions that unmistakably know that there is a real increase in autism, beginning from the young child.

One more thing - because, as Anne Dachel calls it, the tsunami of those same younger children are now aging out of the schools, the number of transitioning youth fairs, special events, etc. has also just exploded in the last 3 years. Gee, what did we do with all of those adults before now???

John Stone

Dear Barry,

You are taking my words out of context. I made it quite clear which data I was citing.

Barry

Susan

At least some of the real data exists

**************

And we know it's real... because pharma funded researchers are telling us it's real ??

The only thing you can trust these days, is what you can verify with your own two eyes.

John Stone

Susan

At least some of the real data exists - I cited some of it in a comment below. I keep some of our local data also. From the mid-90s we were having to improvise new provision. If there had been many autistic children before they had managed to survive remarkably well without being identified in mainstream schools. A local established severe learning difficulty school we visited was not coping with autistic children, and though very nice would not have been suitable. Central government was always keen to clamp down on the numbers of statements of special educational need, setting quotas, but the position was hopeless. I suppose I am particularly angry about this. In 2000 I tried to write an article for a national newspaper about this extraordinary phenomenon which was being brushed under the carpet and the National Autistic Society briefed against me. The experts it seemed were bare-faced liars. One thing among many I can't forgive them was the extreme difficulty of those years, made so much worse by the denial and cover-up.

There is, btw, much real data for the US.

In 1996 the borough appointed a full time school's autism advisor and the list of cases just kept growing till it was beyond her.

susan

It would be interesting to ask teachers who have been in the profession for 20 or more years what they think the increase of children 'on the spectrum' is. Not scientific, I know, but would probably be more realistic than the above 'research'.

Jeannette Bishop

Thank you for explaining further. I don't know how you keep these details straight, while it appears the authors themselves perhaps struggle almost as much as me ("struggle" is my attempt at diplomacy)?

John Stone

Jeannette

It was not in fact a phone survey. They did visit people's homes but it is certainly a strange assumption that cases would be verbally fluent and cooperative. As we know it was originally touted in 2007 (after it had been conducted, but before it was published) as a survey detecting Asperger cases alone - but by 2009 it had become all ASDs, although this was seemingly an impossible claim. Oddly the "cases" with Asperger type scores were excluded in 2009 (although they would have been ASD cases too) but the remaining cases as we have seen were heavily weighted (mean x3.8). But the full data for none of the cases has ever been made available. In one instance they calculated (from where?) that they had missed 19.04 similar cases in the phase one screening.

Morag MacDonald Lyons

Nomenclature bedlam and meyhem going around in ever decreasing circles?
Good common sense study evaluations at
Alliance for natural health uk
Don't get sold a strawberry balenced on top of a big dollop of sheeps droppings, Its not a good deal !

Jeannette Bishop

Thank you for continually challenging this "research." I assume the premise of determining that the autism rate hadn't changed via conducting a phone survey was that they assumed (or had research indicating) that lower functioning cases had not been missed in the past and were the same in both populations?

Betty Bona

@Bill,
I'm not sure there are any true "mental illnesses". I think that "mental illness" is just a catch phrase for when authorities can't or don't want to find the true organic cause of suffering that affects the mind. PTSD, especially in soldiers, is a perfect example of categorizing something as mental illness in order to avoid study into the organic issues involved. Although the trauma is quite real and the stress caused by the trauma can definitely contribute to the organic issues, no amount of counseling a person with PTSD will result in a "cure" for that portion that is truly organic. Relieving the stress can definitely help, and occasionally the organic issues will subside with that relief, but then it is possibly the reduction in cortisol that has caused the lessening of the symptoms of the organic issues. Still an organic thing.

I am seeing something new in people who look like they have early onset Alzheimer's but don't fit the medical profile from the testing they are able to do. I didn't know they were able to determine that from testing, but apparently some claim they can. So the psychiatrists say it is a mental health issue like PTSD instead of an organic issue like Alzheimer's. Almost everyone's life has trauma, but it's especially easy to find in people with a family history of autoimmunity or, of course, in soldiers who have experienced war. So psychiatrists make money on counseling the person to get over the childhood trauma of growing up with a mother sick with lupus or a sibling with autism or the atrocities of war or whatever, when the person really has an organic issue causing the brain fog that needs to be treated. (and that condition may have been caused by modern medicine, vaccines, or the toxin filled diet they had). I think psychiatry has a place in the autism world, but it should be clear that its purpose is to institute the best coping skills possible given the organic issues. And it should be clear that biomedical treatment for the organic issues is a must.

 ciaparker

Bill,
I don't see the difference between the mind and the brain, since it is the brain damage of autism which causes the mind to work abnormally.

John Stone

Bill

Thanks for your comment. Without going into the issue of whether psychiatric conditions may also be caused by physical impairment or damage I agree with you about autism though it remains the case that some psychiatrists are involved in autism diagnosis and treatment - also, of course, it results in highly stressful effects. But I guess there all sorts of problems of definition when you get into the mind/body problem.

Bill

This is a serious question, and I ask for, and invite any answers here:
Since when is "ASD", or "Aspbergers", a *psychiatric* disorder?
Given what's claimed as "Autism", it seems very different from what's claimed as "mental illness".
Wouldn't those of you with autistic children agree that it's not so much the *mind* that's affected in autism, as it is the *brain*? Neurology deals with the brain and the 4 nervous systems, and the pseudoscience of psychiatry purports to deal with the "mind". Yet, psychiatry doesn't even have a good working definition of what that "mind" truly is!
And, I'm asking these questions coming from a context of realizing that society is NOT ready to deal with what the future holds for autistic persons. The so-called "medical community" seems both unwilling, and unable & unprepared, to address these issues HONESTLY....

Hans Litten

http://www.bbc.co.uk/news/health-37440809

Childhood vaccinations 'down again'

The percentage of under-twos in England receiving most routine vaccinations is down slightly for the third year in a row, NHS figures show.
Uptake of the first dose of measles mumps and rubella (MMR) vaccine, given at around one-year-old has also fallen - to 91.9% coverage in 2015-16.
MMR coverage has been falling in recent years, the NHS Digital data shows.
In the UK, the target for immunising children is 95%, which is enough to prevent the diseases spreading,


I say GOOD !!!

John Stone

James

It is very disturbing. I don't want to preempt anything Prof Brugha might say, but on the face of it this all started in the immediate aftermath of the Wakefield press conference in 1998. The UK National Autistic Society cobbled together a paper Wing and Potter, not peer reviewed but oft quoted by the Department of Health)) claiming that incidence of autism was ~1 in 100 in the adult population. (It would be very interesting to see how the membership of the NAS rocketed in the years following 1990 - I saw some figures once). In the 1999 school survey the rate was 1 in 500 for 11 to 15 year olds and 1 in 250 for 5-10 year olds - but bear in mind that both groups were monitored by the same services and they would be more likely to get a dignosis as they got older if they had the condition (in many Asperger/high functioning cases the issue will only become acute at secondary level). So really there was a powerful upward trend and this continued to 2004/5 when in the next school survey the figure had arrived at 1%: this was the point at which the Department of Health stopped counting (and 12 years later there has never been another school survey).

http://www.ageofautism.com/2016/02/the-true-data-revealed-adult-autism-data-fabrication-in-the-united-kingdom-part-3.html

So, an awful lot hung on this 1% figure for the claim that autism was stable - Brugha and colleagues were making the point yet again in the letter to which I posted my comment last month on Pubmed Commons (and in the US context). The Brugha research too was repeatedly cited by Thomas Insel, head of the US NIH despite its apparent weaknesses and it has been cited as a model in the Hillary Clinton autism policy document. I don't want to get party political but the paper has clearly filled a policy requirement: that of how you could explain the rising numbers of autistic children without admitting there was a real problem.

James Grundvig

This reminds me of the 5 Danish Studies and the Poul Thorsen cooked science, data and manipulations. Let's change the goal posts and the size of the field when the results doesn't favor our team. It appears Brugha is Thorsen without the millions stolen in Autism research money.

Benedetta

Ditto what Angus Files said.

And an added prayer.

How Long Father in Heaven will we have to put up with the deceit of men in the maiming and killing of our children? Please Father, not much longer.

Angus Files

Another study not worth the web space its written on and that's before conflicts of interests are discussed.

Superbly researched and written John as always.

MMR RIP

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