1 in 100: How the UK Government Arrived at the Adult Autism Figures
By John Stone
UPDATE April 10, 2015. Revisiting this article five and half years on there are a small number of additional points. For clarity the original survey from 2007 from which this data was derived was looking for instances of Asperger Syndrome only. No mention was made of "higher-functioning autism" until the Eurekalert Press Release in 2008 but by 2009 both the terms "Asperger" and "high-functioning autism" had disappeared to be replaced simply by "autism" but it was the same data-set re-labelled to give a false idea of what was being surveyed. It can also be pointed out that not only were the diagnostic tests non-standard, and diluted the criteria for diagnosis but also that the assessments were not carried out by people qualified to make a diagnosis of autism. In the end it is impossible to say that there were any real cases of Asperger Syndrome let alone autism in this survey. Finally, the survey, originally published as National Statistics, was re-published as peer review study which came to be cited by Thomas Insel, Director of the national Institues of Mental Health, and Chair of the Interagency Autism Coordinating committee (here, here and at IACC meetings) as if it was a credible source.
[Original article] Sometimes events across the pond seem connected. Just a few days ago the UK National Health Service’s Information Centre announced its new survey, which purportedly showed adult incidence of Autistic Spectrum Disorders running at the rate of 1 in 100 – according to them exactly the same rate as for schoolchildren, thus clearing MMR vaccine (or any other vaccine exposure for that matter) from being implicated in autism. Never mind that the rate was projected from a base of just 19 unconfirmed cases, or that the survey included young adults born between 1986 and 1991 who may have had MMR, or that the study had only high functioning and Asperger cases in it, or that the autism rate amongst schoolchildren in the UK runs at more like 1 in 64 - what an excellent opportunity for the US National Institute of Mental Health to concede that the autism rate for US children was also now 1 in 100, up from 1 in 150. There is now an official statistic they can cite that a rate of 1 in 100 for autism in both children and adults is perfectly normal, and nothing whatever to worry about.
To set the very curious British adult autism survey in context it is enlightening to return to the Eurekalert media announcement of May 2008 ‘University of Leicester to lead adult autism audit’ (HERE . We read:
“Professor Terry Brugha, Professor of Psychiatry in the Department of Health Sciences is spearheading the study in conjunction with a team of research experts including the the National Centre for Social Research (NatCen), Research Autism and Professor Simon Baron-Cohen of the Autism Research Centre. It will report in 2009.”
Interesting, first of all, to note that though it does not anticipate the result of the survey it does go on to cite a 1 in 100 autism rate figure for children in the UK:
“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. “
But perhaps the most astonishing statement from the 2008 press release in retrospect is this:
‘The prevalence study will make use of new data collected in 2007 by NatCen and Professor Brugha’s team to record the number of adults with Asperger's syndrome and high functioning autism. There will also be an additional part to the study on the number of people with autism who have more complex needs and learning disabilities. The aim of the combined research will provide good epidemiological information in terms of prevalence and the characteristics and problems of this group.’
The new report, therefore, is based not on the full range of ASDs but solely on the data collected for the “Asperger syndrome and high functioning autism” by Prof Brugha in 2007; the “additional part” on “more complex needs and learning disabilities” has not been included at all, if it was ever conducted. On the other hand the report has been incorrectly published under a title which suggests that it is in fact a survey of all Autistic Spectrum Disorders “Autistic Spectrum Disorders in adults living in household throughout England” (HERE) , and this was how it was announced to the media.
Other key questions arise:-
One is: why, if this report includes only people with Asperger’s Syndrome and high functioning autism - and only represents a proportion of ASDs - is the figure so high?
The diagnostic methodology has already been heavily criticised by Dr Carol Stott (HERE ).
Stott complained about the use of non-standard tests both in the initial phase 1 population screening – the specially created AQ-20 (Autism Quotient) - and in phase 2 the use of ADOS (Autism Diagnostic Observation Schedule), which is not well-established for adults, and which was not scored in a standard way. It also seems the more standard SCID (Structural Clinical Interview for DSM-IV Disorders) was carried out in phase 2 but the results not published. However, the single oddest feature is having screened 7,400 people in phase 1 and having retained 630 with the most likely psychiatric profiles for intensive screening in phase 2, they then hypothesised that apart from the 19 cases actually identified in phase 2 they had missed a further 53 in phase 1. This is puzzling: it would be rational to calculate you had missed some – particularly given drop-outs – but to calculate that you had missed nearly three-quarters puts the whole process in doubt, not least because the original purpose was that of charting unknown territory.
A second is: how can statistics compiled for only the segment of ASDs comprising Asperger Syndrome and high functioning autism be included in UK National Statistics as representative figures for all ASDs (at least those living in households)?
This seems to be an over-riding objection even before you consider methodology. An inscription at the head of the publication states:
“This new set of statistics has not been formally assessed for compliance with the Code of Practice for Official Statistics. However, the Statistics Authority has agreed that, in view of the fact that the statistics are the product of secondary analysis of existing National Statistics, they can be designated as National Statistics. The producer body has confirmed that the new statistics are produced to the same standards as the existing ones.”
So, the Statistics Authority waived the necessity for compliance with its standards on the basis of assurances from the authors, or the institutions supporting them. On the other hand the fact that the statistics may derive in some way from National Statistics could not in itself ensure integrity.
Other issues:-
--While the report did not refer to MMR or the vaccine/autism issue it was used by the NHS Information Centre to bolster MMR (Guardian, BBC ) it was not mentioned that study included young adults born in the years 1986 to 1991 who would have had MMR.
--Inclusion in the study was based on the willingness and ability of selected members of the public to answer questions on the telephone in the first phase and cooperation with a complex psychiatric assessment in the second phase. The results are self-selecting and unrepresentative.
--The 19 cases were unrepresentative of the population at large, including no one from an ethnic minority, and a low ratio of females to males (the usual ratio of males to females with ASD being about 4 to 1, but here 9 to 1).
--In an exercise in faux statistical precision, the study authors assign a “95% confidence interval” to their 1% estimate, but it is hard to see how you can repeat what has not been achieved in the first place.
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Irrespective of cause it is tragic to see the great issue of autism prevalence betrayed in this way. What is actually shown here is that if the figure for adults provided by the survey was genuine it would still only be a relatively small fraction of cases in total: i.e. missing out low functioning ASDs, people living in institutions, all ethnic minority cases, perhaps half of females etc., but still coming up with the magic 1 in 100 – and the true rate of adult ASDs would be well in excess of 1 in 50, with all the most difficult cases left out and apparently still invisible. If we have learnt anything about adult autism cases it is that they are rather hard to find, so the 1 in 100 figure for what is apparently a small fraction is absurdly high and very poorly accounted. This study does not increase our knowledge: it just makes matters very much worse.
Little over three months ago Simon Baron-Cohen responded enigmatically to Anne Dachel of Age of Autism: “I agree we need a good prevalence study of ADULTS with autism spectrum conditions, and I haven't seen a study like this!” Baron-Cohen obviously knew about this study which conspicuously does not now have his name on it as a co-author, despite this having been publicly announced in May 2008. It does, however, still have the imprimatur of Baron-Cohen’s Autism Research Centre. This whole episode has been immensely damaging and must corrode further the autism community’s trust in public institutions - eloquent testimony to what the British government really thinks about MMR and autism.
John Stone is UK Contributing Editor for Age of Autism.
This was written in The Daily Mail in 2007, 3 years after the Study was completed, so already this data is 8 years out of date. It would suggest the figure I have already quoted of 1 in 52 needs to be adjusted to an even higher number such as 1 in 40, judging by the speed autism has multiplied in the last 25 years.
"Last year a study suggested the figure may be as high as one in 86, and now the Cambridge team say it could be as high as one in 58.
It is not known whether the rise is down to better diagnosis of the condition, or because the numbers with autism are actually rising.
Professor Baron-Cohen and his team arrived at their estimate by studying the incidence of autism and ASD among 12,000 children at Cambridgeshire primary schools between 2001 and 2004".
Read more: http://www.dailymail.co.uk/health/article-466966/One-58-British-children-autistic-new-figures-reveal.html#ixzz1qta9VWsT
Posted by: John Ivens | April 02, 2012 at 11:13 AM
Thanks John I agree the other drugs that are damaging mitochondria and msg damage are missed. I will add antidepressants to your list and add a site msgtruth for further consideration. There is a flowchart at msgtruth which is quite interesting. The list of drugs that cause mitochondrial dysfunction is a google search away to anyone interested.
Posted by: sandy | October 09, 2009 at 03:32 PM
And when I wrote to Professor Baron-Cohen about the survey finding one in 100 adults with autism, he was very polite but would only say, "Please direct communication about this study to the lead author and investigator of this study, Prof Terry Brugha."
Certainly someone who's cited as a national expert on autism in Britain should have had more to say.
Anne Dachel
Media
Posted by: Anne Dachel | October 07, 2009 at 07:46 PM
Michelle, as far as I am concerned if "autism" goes undisgnosed you don't have it. If you can talk on the phone and answer a questionnare you don't have the disorder my son has. They are taking a mild or self-diagnosed condition and calling it autism. This is the Big Lie.
Posted by: julie | October 07, 2009 at 01:48 PM
Thanks everybody for your posts, and your supportive comments.
Lorene - as for your last sentence - I just wanted to point out that there was supposed to be just such a part to the present study and it did not materialise. When the chips were down, with more than a decade of unsupported claims, and with all the resources of the British government they could not document these cases - so it is already rather late in the day.
Gatagorra: an interesting speculation but we just don't know. One question is how many spectrum cases there were using the supressed SCID/DSM-IV results. I presume not more than 19.
Michelle. Yes, I completely believe there will be cases of adults that have been missed, as well others that have not been certainly identified by this study.
One thing that appalls me about this survey is not simply that I don't believe its headline conclusions, but also that it is so very badly done. For all generations of autistic people it is a travesty, and tells you nothing about the real shape and social implications of the problem. This was not the way to do this job.
Posted by: John Stone | October 07, 2009 at 01:26 PM
I think this is great information; however, as a mother of two Autistic children I have read enough books and seen enough children that I can clearly see undignosed adults, especially at my job in the computer career field. This tends to be an area that is suited well for those with Autism.
Posted by: Michelle Houchin | October 07, 2009 at 11:30 AM
Thanks for pointing out some of the flaws of this adult survey. The screen targets Asperger and not ASD as a whole group, and the 19 individuals found as having ASD based on ADOS-4 (a module designed for verbal ASD adults) are insufficient to reach any solid conclusion. I would also like to add the following information that can be found in the paper:
p30 “If the selected respondent was not capable of undertaking the interview alone for reason of mental or physical incapacity, the option was available for a proxy interview conducted with another member of the family... The information collected was not sufficient for selection probabilities to be calculated, and therefore selected respondents interviewed via proxy respondent were not eligible for a phase 2 interview”
It was reported that 58 interviews were conducted by proxy from an initial screen of 13,171 addresses... These 58 cases may represent the rest of the spectrum, excluding Asperger Syndrome (as these individuals can answer the AQ phase I survey). They may also include other types of disability, it is unknown. These data would therefore suggest that at most, there is 0.4% of the addresses (that exclude communal or institutional settings) with a level of autism that is more severe to that of Asperger. Does this population reflect the ASD population we have today? It does not match today’s statistics, therefore the population is changing, unlike what the paper tries to argue. I suspect though, there will soon be some papers rushing in to say that institution and communal settings are packed with more severe cases of adults with ASD.
Dr. Lorene Amet
Autism Treatment Trust
Edinurgh/UK
Posted by: Lorene Amet | October 07, 2009 at 11:09 AM
I'm in the midst of reading a book right now-- "Drug-Induced Dementia: The Perfect Crime"-- that has me convinced that Brugha's study may very easily be including adult-onset drug induced dementias (rates which are also exploding) and trying to pass them off as childhood-onset autism. In point of fact, there are some terrible similarities between all these conditions since apparently the effects of certain psychoactive drugs mimic much of the specific oxidative stress and mitochondrial dysfunction seen in vaccine injuries and even environmental schizophrenia. The symptom profile for drug-induced brain injury is frighteningly similar but on close inspection (which Brugha avoided), the differences could be seen, particulraly in terms of history of onset and health history. Stereotypes, OCD, robotic behavior, violent outbursts, severe sensory disorders, tics and seizures, emotional withdrawal, speech and language disorders are all part and parcel with drug injuries.
I know the author was conscious of the overlaps becuase I corresponded with her about it in 2007 when she was in the midst of writing the book. She described herself as a fan of Dr. Wakefield, found his theory brilliant and answered some of my questions about ways in which drugs can induce many of the same cellular markers and clinical symptoms of autism.
It occurred to me that some of the individuals in the study themselves might also try to pass themselves off as autistic because of the very slim margin by which ASD may be less socially stigmatized (just at the moment due to industry's positive-poster-childing of individuals with autism) at least relative to straight out brain damage in all its modern, pharmaceutically-mediated forms ("bipolar disorder", OCD, etc.).
It's predictable that those with moderate-but-non-autistic vaccine/environmental injuries twenty or so years ago could have been made worse over the years. Many of the typical methods of "treating" vaccine injured children, whether they're subclinically injured and labeled "ADHD" or noticably injured and labeled ASD, worsen the specific damage wrought by vaccines on a cellular level, including the destruction of glutathione. It's not at all unlikely that a child born in 1980 who developed either mild behavioral issues or seizures from that year's batch of shots and who went on to be treated for years with either stimulants or anticonvulsants (or both and more), could conceivably have gone from mildly learning impaired and non-autistic to crossing the least severe edge of the spectrum eventually.
The perfect crime indeed. We have to demand better substantiation of the health histories of those being deemed "adults with autism". This is fraud.
Posted by: Gatogorra | October 07, 2009 at 10:19 AM
John Stone as always you are direct and to the point.
Stats has always been my weakness (just like the rest of the population), and the corrupt use this to make the general population's eyes glaze over and accept what the courrupt wants from them.
Posted by: Benedetta | October 07, 2009 at 09:29 AM
..."it is tragic to see the great issue of autism prevalence betrayed in this way."
What a great line this is! Thanks, John for breaking this down and showing how the pieces fit together to show a picture of deceit and biased reporting. Simon Baron-Cohen has some explaining to do. The lengths some are going to as they manipulate the truth (and the facts along the way) are disturbing. The lack of moral and ethical conscience are glaringly obvious here.
Posted by: Teresa Conrick | October 07, 2009 at 06:51 AM
They better go find some more adults with autism, before autism prevalence in children doubles again.
With 3bn worth of toxin-and-dangerous-adjuvants-laden swine flu vaccine being handed around right now, with young children and pregnant women being primary targets, lets brace ourselves for that point in future when autism prevalence figures are revealed for 2009 and 2010 birth cohorts.
They better find many more adults with autism by then.
Posted by: Natasa | October 07, 2009 at 05:33 AM
John you are a genius.
This is one science I find hard to get to grips with, scientists have been blinding us with it since the introduction of MMR. Beautifully explained.
Shame on them.
Posted by: Alli Edwards | October 07, 2009 at 02:35 AM