UK's NHS Report Suggests Autism Increase Due to Oversight?

London, UK

NHS Autism Report suggests the increase in autism in recent years was all down to an oversight …

Polly Tommey is the mother of a thirteen year old son with autism.She is also the Editor of www.autismfile.com. In both roles, as a mother speaking with other parents day in, day out, and as a journalist dealing withconstantly increasing numbers of calls describing personal crises for the lastten years, she has had direct experience of the increasing pressure being causedby the numbers of people dealing with autism.

Polly, like many others, has also attended conferences, seminars and workshopsworldwide for the last decade and has heard endless research reports and debates on what is the cause of the increase in the prevalence of autism in countriesacross the world.Statistics citing 5 in 10,000 with autism in 1990 increasing to 1 in 100 today have been used bymany from all backgrounds. However it ‘appears’ that it was all now a mistake and that there has been no increase at all … the apparent 95% step up was simply down to an oversight, a lack of awareness and non-diagnosis.Autism isn’t a new problem at all, we’ve had the same level all along – and perhaps, if the data is critiqued, it is actually in decline!

Scepticism surrounds the interpretation of this new report … “Why on earth did this ‘ground-breaking’ news get forced up the news bulletins in the way that it did on Monday evening here in the UK?”, asks Polly, “Are we really able to believe all that we hear on such important subjects, or is there a stronger hand with adifferent agenda behind it?”

A review of the detail behind the headlines will enable any objective reader to draw their own conclusions …

According to a National Health Service report published yesterday (Sept 22nd) 1 in 100 adults in theUK has an Autism Spectrum Disorder (ASD). The report was based on adults living in households throughout England and the assessments were done in two stages. Stage One asked individuals to rate how well they agreed with 20 statements about their likes, dislikes and abilities – such as whether they preferred going to ‘libraries’ or ‘parties’. Stage Two involved a clinical interview designed for adolescents and adults with fluent speech. No-one in thestudy lived in supported accommodation or residential care; everyone in thestudy was verbally fluent. Nonetheless, 1 in 100 had an Autism Spectrum Disorder?

Subsequent news reports are claiming that these figures match the numbers already identified in children, however the children’s figure includes less able, less fluent and non-verbal children. If the full range of ability had been included in the NHS report, alongside the verbally fluent, high functioning adults living at home, there would surely be far more than 1 in 100. So, either there are more adults than children with an ASD and autism is on the decline(!?) or there is something wrong with the report.

Polly comments, “The irony for many families in the UK is that in order to get support for a child with an ASD you have to wait over two years for a diagnosis; if you wait long enough, eventually you will be asked to spend several hours talking in detail about your child’s development, his present behaviour, his speech,language and cognitive ability. You will need to have your child observed athome, at school, in the playground, in the classroom, and then you will need tostart the long process of applying for a Statement of Educational Need to makesure he gets the educational provision he needs. If this fails, which it oftendoes first time around, you will need to do it again, maybe with legalrepresentation, and a significant hole in the bank balance.”

Polly cynically concludes, “So, perhaps the report is good news. Maybe now, ASD diagnosis will be based on a few questions about whether you like ‘libraries’or ‘parties’ best, followed by a 30 minute chat. One thing is clear, however, the report has no relevance to children withautism like my son Billy and the many thousands like him. These are children who the system has so far failed and who, unless something is done now, certainlywon’t be coping as adults, in ordinary ‘English households’, or responding to self-report questionnaires about their social nuances.”

Dr Carol Stott, Scientific Editor of The Autism File Magazine comments on thereport:

Whatever claims are made to the contrary this report tells us very little about the number of adults with ASDs – inEnglandor anywhere else. The main problems with the study are with (a) case-definition, (b) ascertainment (c) diagnostic instruments (d) case identification and (e) statistical power.

There is no clearly stated case-definition anywhere in the report. The cases reported are defined loosely in terms of an initial score on a shortened unstandardised non-peer reviewed version of ascreening tool together with a semi-structured clinical interview – the Autism Diagnostic Observation Schedule (ADOS) – that was not designed to act as astand-alone diagnostic instrument.

The sample selected is not representative of the ASD population. All participants were verbally fluent, living in ordinary households, and able to complete a self-report questionnaire.

The choice of measurement tools is inadequately justified and badly referenced. No details are provided, nor are any sources referenced, on the psychometric properties of the initial screening instrument (AQ-20). The standardized scoring criteria for the ADOS were not followed (using a total cut-off of 10 for Communication + Social Reciprocity, rather than three cut-offs (respectively) of 3, 6 and 10 for Communication, Social Reciprocity and the two combined). Additionally the authors over state the validity of the ADOS as a tool for use in adult populations. Module Four (used in the study) was standardized on a sample of only 70 adults aged between 16 and 44. Ages in the study sample range from 16 – 75.

The technical appendix, which is intended to provide information about the derivation of the AQ-20 is statistically naïve, unclear and potentially inaccurate. It is not clear for example, what is meant by the phrase on pg 16 of Appendix C "….once the final set of predictors had been selected, a regression equation was available for predicting the prevalence of ADOS." Neither is it clear whether General Linear Modelling, Linear Regression or both were used to derive final items.

Finally, inferences are made about the lack of a significant association between age-groups and ASD prevalence without reference to statistical power. In a study of this size, with only 19 identified (unweighted) cases, the likelihood is that the study was underpowered to detect such differences.

A valid and reliable study of the population frequency of a disorder requires clear and robust case definition, validated instruments, standardized procedures and adequate statistical power. An initial evaluation of this report suggests it fails on all counts. A further much more detailed critique is currently being prepared and will be featured in The Autism File Magazine: Scientific Review early in the New Year.

 

Comments

[Robin Rowlands]

John
Since I sent my letter in March I have been isolated and have had to watch the letter discussed cyptically in the media and parliament.

There is dark talk of a constituional crisis.
Rumours that the British Government refused to stand down when so instructed by Her Majesty.

We dance with shadows beyond the veil.
Robin

[Garbo]

Robin --
"he knows whats coming once the American Press smell the blood"

Sadly, I think you are seriously overestimating the American Press. They've been completely feckless when it comes to vaccine issues; they are too beholden to pharma advertising dollars and stock options. They have been complicit in training the American public to regard anyone who questions the safety of vaccines as a village idiot. We are viewed with an unvarnished contempt. You might have the most explosive document in the world, but you are right that "few would believe it" because the media will never present it in a way that leads people to believe, let alone be outraged. The cognitive dissonance is still too great between what people have been taught to believe about vaccines and their sad reality. They still can't wrap their heads around Simpsonwood, and that was ten years ago!

[John Stone]

Robin,

I don't know what you know - or at least don't have any specific idea of what it is, and I am certainly not wittingly party to any state secrets. There are, of course, many appalling things which are not state secrets which are also not reported. You may also be right that the use of D notices is more widespread than I thought.

It wouldn't surprise me given what is in the public domain, that what isn't would be vile beyond words.

John

[Robin Rowlands]

John as you are aware a D Notice is notionally a voluntary agreement / understanding by the media not to cover a story that compromises the security or stability of the nation.

Whilst it cannot be enforced as such the newspaper or TV channel that breaks such a notice will suffer dire consequences.

It would be easy enough for me to issue the letter direct to the USA but to do so would let the British Government of the hook

1. Few would believe it.
2. Once Public the Government UK & USA would not be guilty of suppressing it.

Someone once said the difference between fascism and democracy is that in a fascist state the dissident is buried in the ground, in a democracy the dissident is buried in the crowd.

The NAZI's justified Auschwitz by claiming that:
1. They all acted under orders
2. Jews were not really considered human.

It is encouraging to see that in the Modern World are excuses for GENOCIDE have become so much more sophisticated and people just as happy as ever to avoid such an unpleasant and awkward subject.

Perhaps the USA feel free of it but in a murder the police follow the blood - blood doesn't flush away (but then again it does doesn't it) - blood tends to get everywhere.

In the UK we do not have freedom we have rights - and the rights of the many always outweigh the rights of the few - i think you know in America what this is called.

Obama isn't worried about the British voters it is the American voters he fears and the British Government by putting a D Notice on my letter have let the cat out of the bag.

That is why Obama doesn't want to hug Gordon Brown or have anything to do with him he knows whats coming once the American Press smell the blood

[John Stone]

Sorry correction:-

"We do have an example of an editor of a national newspaper, Roger Alton, losing his job over MMR when in July in 2007 ahead of [the GMC hearing] the Observer published alarming figures about the autism rate. The Observer was pilloried by a journalist (Ben Goldacre) from its sister newspaper, the Guardian, by study author Simon Baron-Cohen and Fiona Fox of the industry lobby group Science Media Centre, though subsequently the story proved to completely correct:"

[John Stone]

Hi Robin,

Many thanks for your remarks. First of all let me say that I am not the author of this article, which has caused confusion on other sites. Let me also say that my opportunities to drink with journalists are few and far between these day.

For the benefit of American readers I should also explain that a D notice, or more correctly these days a DA notice is an injunction forbidding the reporting of certain matters for security reasons, handed out by the UK Ministry of Defence. I have never really been sure how relevant this is to vaccine issues because my impression is that media discipline, which is powerful but not absolute, is largely maintained by other means - but it is also the case that in some instances things that are widely talked about, virtually never come out through mainstream media sources.

For instance, it was never reported over years that the child of Sally Clark died 5 hours after receiving 5 vaccines - although the media wept buckets over her wrongful inprisonment for the infant's murder and after her death, they never reported this basic fact. But then there was an article in the Spectator, which is a mainstream source, and this was even available on the web for two years, though I note it has recently been removed.

Another example of the press not reporting was in April of last year when before a number of senior journalist's Andrew Wakefield refuted the allegations of Richard Horton before GMC, and only a rather weasel report emerged in the news columns of BMJ, downplaying its significance.

We do have an example of an editor of a national newspaper, Roger Alton, losing his job over MMR when in July in 2007 ahead of the Observer published alarming figures about the autism rate. The Observer was pilloried by a journalist (Ben Goldacre) from its sister newspaper, the Guardian, by study author Simon Baron-Cohen and Fiona Fox of the industry lobby group Science Media Centre, though subsequently the story proved to completely correct:

http://www.ageofautism.com/2009/04/autism-the-64-billion-dollar-a-year-question-for-simon-baroncohen-ben-goldacre-fiona-fox-and-autism-.html

So, for all I know Robin may be right about some of it, though I suspect most of it is done by professional intimidation - and I know that many journalists in the British press would like to report and it is the editors, unsure of their ground, who largely chicken-out.

[Robin Rowlands]

Why is Gordon Brown desperate for a hug from Barrack Obama why is Barrack Obama stiff as a board.
Robin Rowlands

[Robin Rowlands]

John Stone
Have you found anybody who will talk to you yet.

Telephones and Email are not the way.

Turn up at your journalist freinds office ask if has time for a A pint.

Tell him you need to talk tell him how parents of autistic children are treted tell him how it hurts tell him how the politicians dont give a damn.

A few more drinks let the journalist talk more than you.

Let him tell you - you dont know the half of it.

Tell him you had heard talk but didn't know what to make of it.

Let him tell you about the letter the letter that is D Noticed don't mention the D Notice that will worry him.

Once he starts talking about the letter sympathise, how ghastly to have such a letter and be powerless to do anything about it.

Look him in the eye ask him for a copy of the letter and the D Notice.

The letter has done for New Labour in Britain it affects not just Britain - the USA France Germany will all take a seismic hit.
Robin Rowlands

[RAJ]

The Guardian article begins with neurodiversity quackery:

http://www.guardian.co.uk/lifeandstyle/2009/sep/24/adults-autism

Darwin, Einstein, Mozart, Beethoven, Newton and even Adolph Hitler have all been diagnosed with autism.

Nothing is more science based than diagnosing the dead which seems to be a peculiar fascination with English authors.

I'm surprised the authors of this study didn't find 1 in 50 or 1 in 25.

[Robin Rowlands]

John Stone
I suppose you are pretty sick of this on going cover up when year after year more and more parents have to suffer what we have all sufferd both in the USA and UK.
If you have freinds in the British Press who will talk to you of record it will have to be of record.
Ask them about me Maybe they will let you have a copy of the non existent letter.
Robin Rowlands We were on the Guardian Site at the same time - well for a while