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UK Government Farce Over New Adult Autism Study

Flawed_story1

By John Stone

A widely publicized report purporting once again to disprove a link between the measles-mumps-rubella shot and autism has been shown to be irretrievably flawed within hours of publication. Launched two days ago in the British media amid headlines like ‘Autism just as common in adults, so MMR is off the hook’ (Guardian HERE) and ‘Autism rates back MMR jab safety’ (BBC HERE)  the study was based on just 19 cases, who were never assessed according to accepted diagnostic criteria for autism, and included adults as young as 16 who would have received MMR vaccine anyway.

The study (HERE) – led by Professor Traolach (Terry)  Brugha - was conducted by the University of Leicester and the prestigious Autism Research Centre of the University of Cambridge, director Professor Simon Baron-Cohen. Despite this, neither standardized psychometric testing for autism, or accepted epidemiological methods were employed in reaching its conclusions , and much of its methodology remains obscure.  The Department of Health has long been under pressure to show that autism was just as prevalent as today before MMR vaccine was introduced in 1988. But rather than dispel such concerns the new report is more likely to support claims of a cover-up.

Given the seriousness of assessing the needs of an autistic population and what environmental or medical issues might be involved in fluctuations in incidence over a period - along with the fact that these questions have been the subject of intense public concern for more than a decade - the failure is manifest. Earlier this year Baron-Cohen expressed his opinion to Age of Autism that in time autism incidence in the present adult population would be shown to be in line with the 1 in 64 figure he had detected in Cambridgeshire school population in the first part of the current decade (Age of Autism HERE). The figures in the new study as stated are in line with the 1 in I00 figure usually accepted for the school population, but are anomalous in several ways. For instance, while the diagnostic criteria seem loose and even whimsical, all cases are “self-reporting” and therefore presumably rather able – the study contains no lower continuum cases. It is almost as if having found a means to “identify” 1 in 100 cases they stopped counting.
Once again officially approved data leaves us at sea. At the head of the present document we find the cryptic statement:

“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 information in this study has been enshrined as official truth.

Against this I note our local data (Haringey). A decade ago, when diagnostic practices were already very much as they are today we had about 1 ASD case coming through to adulthood every year (although the numbers were exploding in the under 11s and particularly the under 7s). The other day I met a friend who monitors these things who said they now come through at the rate of 20 or 30 a year, but next year it was going to be 53. This is real, and it has happened, moreover, in an era in which government was hostile to the expansion of Special Educational Needs. For all the many acrimonious tribunals they still could not keep the lid on it.

Appended are some expert comments on the new study which have been forwarded:- 
 
Brief Comments/General Points

This is not a prevalence study.

The cornerstone of any ‘prevalence’ or ‘incidence’ study is case-definition. If we are to identify cases with confidence, and accurately differentiate cases from non-cases, the case definition must be clearly laid out, with inclusion and exclusion criteria explicitly stated. 

A second major consideration in any study of population frequency is ascertainment; the process by which subjects are brought into the study. It is vital that the sample selected is representative of the population of interest and that those identified as cases within the sample are likely to represent the range of cases in the population with the disorder of interest. 

A third consideration is the choice of measurement tools and methods by which information is gathered. Measurement tools must have known and well referenced psychometric properties in respect of the disorder of interest, and standardization rules with respect to the measurement tools must be followed. Any departure from the standardized administration or interpretation of instruments invalidates their use.

A fourth consideration is statistical power. If inferences are to be made about the statistical significance of within-sample differences (for example in age, sex) the sample size must be sufficiently large to provide adequate statistical power.

Case Definition

• There is no clearly stated case-definition anywhere in the report

• Inclusion / exclusion criteria are not clear

• Experts have NOT reached broad consensus on what constitutes the <diagnostic> category of ASD. In fact, as the authors point out, ASD does not exist as a diagnostic category

Ascertainment

• All identified cases are based initially on self-report, from verbally fluent adults living in ordinary household accommodation: this excludes a large proportion of the population of interest

Derivation of the Instruments – Appendix C

• The authors state that: in order to meet data quality requirements in surveys: validity, reliability, portability, and to minimize respondent burden a self-report questionnaire was needed that could predict ASD caseness. It is by no means clear why such an instrument needs to be self-report.

• The reference given to Baron-Cohen et al. 2001 is to the AG-50. No references are provided for the AQ-20. One can only assume therefore, that no psychometric properties for the instrument are available. With respect to the referenced AQ-50 Baron-Cohen et al. (2001) conclude: The AQ is thus a valuable instrument for rapidly quantifying where any given individual is situated on the continuum from autism to normality. Its potential for screening for autism spectrum conditions in adults of normal intelligence remains to be fully explored.

• The AQ-50 is normed on a very selective population not representative of the range of ASD in the UK. Described thus in Baron-Cohen (2001): In this paper, we report on a new instrument to assess this: the Autism-Spectrum Quotient (AQ). Individuals score in the range 0-50. Four groups of subjects were assessed: Group 1: 58 adults with Asperger syndrome (AS) or high-functioning autism (HFA); Group 2: 174 randomly selected controls. Group 3: 840 students in Cambridge University; and Group 4: 16 winners of the UK Mathematics Olympiad

• The authors claim that ‘…the AQ has been shown in clinical populations to have a good correspondence with ASD diagnosis. ‘ but no reference is provided.

• The ‘modelling’ undertaken to identify AQ-20 items was not General Linear Modelling as stated. Logistic Regression is not GLM. In any case neither logistic Regression nor General Linear Modelling are not the correct procedures to use for item selection. 
 
Identification of Cases

• This aspect of the report is substantially flawed. The authors refer to the fact that gathering data on ‘…both early development and on current day to day functioning over an extended period…’ is not practical. Diagnosis of ‘ASD’ (and therefore accurate estimates of prevalence) are simply not possible in the absence of this information

• As noted earlier, psychometric properties of the AQ-20 in predicting ASD have not been reported elsewhere. Further, it appears that the standardized scoring criteria for the ADOS were not followed in the identification of cases. The authors of the current report refer to a score of 10 or more as being indicative of an ASD. Whilst a score of 10 or more on the Communication and Reciprocal Social Interaction (RSI) sections is necessary for an ‘Autism’ categorisation, it is also necessary to score 3 or over on Communication alone and 6 or over on RSI. Someone scoring a total of 10 points on SRI and 0 on Communication, for example does not meet standardized criteria for an autism categorization.

• Further, the ADOS allows for a ‘spectrum’ categorisation based on a score of 2 or more on Communication, 4 or more on RSI and 7 or more in total. This was taken into account in developing the instrument for use in population studies, but is not taken account of in the main ‘study’.

Several references are either incorrect or misleading:

• On pg 16, the authors refer to the ADOS  as an instrument used to collect information on adult functioning’. In fact the ADOS Module 4 was normed on only 70 adults, aged between 10 and 40 years. No standardization data is referenced for 40+ age ranges, which comprise a high proportion of the current sample.

• Again on pg 16 the authors refer to the ADOS ‘…rarely being used with older adults or in a general population’ then refer us to a study in which aspects of the ADOS algorithm for all modules was evaluated and replicated ‘…using data from children ages 18 months to 16 years’. Given that the current report is focused on 16+ years and on Module 4, this is misleading at best. They go on to state that an additional validation and quality assurance study was undertaken and is reported elsewhere, but they do not reference this.

• Additionally, the ADOS should not be used in isolation as a diagnostic instrument. It is not standardized as a stand-alone diagnostic tool and the diagnostic algorithm does not cover all aspects of the ASD triad. 

Statistical Power

Whilst the authors inform us that no statistically significant differences were generated between smaller range age-groups, they provide no data on this and do not address the issue of power. This is not sufficient justification to make a decision not to adjust for age.

In summary (so far!) the report has substantial flaws in terms of case-Definition, Ascertainment, Instrument Development, Identification of Cases and Statistical Analysis and several references (of those checked so far) are misleading.
General notes to add: the age range includes people who would have received MMR. Anyone born after 1987. We need more information on actual numbers. The total of 19 cases doesn’t appear to fit with the percentages based on unweighted bases.

This may be accounted for by missing data but if so, the issue of missing data should be clearly addressed.

It should surely strike the authors as being a little odd that on the basis of only HFA/AS adults we have a prevalence estimate of 1 in 100. What about all the less able people. Are they suggesting that prevalence has in fact decreased? 

What would happen if this method was applied to the recently completed Cambridge prevalence study?

John Stone is UK Contributor for Age of Autism.
 

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And it gets better (-worse). It seems the lower ranks of the National Health Army are duly obeying their orders on this matter. In connection with my severe adult dental mercury poisoning which starkly began at age 15, I have recently managed to have an appointment with a consultant psych in an attempt to get mercury diagnosis and dental removal treatment. Instead the psych said she did not have the expertise to diagnose mercury, but also noted that I kept refusing to give the short "yes/no" simplistic answers to the unhelpful questions she put. On the basis of this supposedly showing a communication disability on my part she proposed referring me to a higher-level psych as possible diagnosis of autism/Aspergers.

So on the one hand they avoid the officially-denialised diagnosis of dental mercury poisoning. And on the other hand they imagine me as a nice candidate for one of Simon Baron-Cohen's Hidden Horde of adult autists instead.

An excellent demolition of this taxpayer-funded study of which the quality is in inverse relation to its huge number of pages. There's certainly been an increase of autism, caused by a source of mercury. Though I see negligible evidence it has been caused by any vaccinations.

Thank you, Kathy and others: good points.

* Are teachers making things up when they report on more and more children with special needs like ASD diagnoses coming through than years before?

* ASD was happening before the advent of the MMR (particularly associated with the DPT), but if the PTB can make people think there has been no increase of incidence, they will use that 'info' to try to take the MMR off the hook - only to make people wonder what the hell has been causing it all along, then, which query will not take vaccines off the hook. Incidentally, there is info about the adding of aborted fetal cells to various vaccines, which can be associated with such as ASD (brain inflammation/damage from autoimmunity effect), and which has never been studied properly. Add that factor to your list, Kathy...

Indeed: 'They' don't care how toxic our environment has gotten. Why? Because illness & disease generates economic activity. Good health doesn't. End of story.

We're talking about the need for an evolution. Not revolution. Not to give them the satisfaction of 'legally' suppressing any more outraged parents. But evolving by ignoring their systems, and creating new ones, more amenable to people than profit. That means the creation of more and more local economic trading systems (LETS), and a massive swing to CAM (Complementary and Alternative Medicine), and so forth. Don't try to slay the monster. Ignore him. And he'll go away, like the Dodo bird. Extinct. Fini. And not before time.

A shame. The medical profession started out as an honorable one. But it got caught up in the lust for profit, like its other corporate buddies. Well; their choice. And ours is now to toss them in the trash bin. Because children come first. Not profit.

The measles virus is definitely one cause of our severe and PAINFUL gut pains which is the part of my autism I want cured. (I like my brain). I think there are other causes, heavy metals, (sludge fertilizers were a factor in mine). Gluatamate is suspect and its hidden in many foods unde3 30 different names (google) and in every live virus shot. But I knew somebody at a support group I belonged to who got Autism from the disease. And there are folks in history who had painful gut problems who sound like us. Wilber Wilberforce who did for England with clever politicking what we needed a long and bloody war to do in the US (freed the slaves) comes to mind. He acted the way we do and had terrible gut problems. There are others in history. We need to get rid of ALL live virus vaccines. Somebody ALWAYS gets the disease itself no matter how "weakened" the vaccine supposedly is. And that's just common sense!

The BBC reported on the adult autism study and described autism like this:
"People with autism spectrum disorder may suffer a range of problems, including difficulty interacting with other people and communicating their feelings."

The survey reported, "ASD is known to be strongly associated with the presence of learning disabilities and it has been estimated that 7.5%of adults with a learning disability may also have ASD."


What's implied here of course is that adults who have been labeled LD, may actually be autistic. If we just identify them, we'd find the same rate that we see in children everywhere.


Anyone really thinking about this has got to see the flaws in this proposal.


I have yet to see experts like Baron-Cohen and Brugha actually show us the autistic adults displaying the same characteristics of classic autism we see in our children.

Where are the adults whose autism symptoms are undeniable?

Where are the adults in their 40s, 50s, and 60s who don't talk, are in diapers, bang holes in walls, and stim and scream for hours on end?

I know lots of severely autistic kids just around here who would never be able to respond to either set of survey questions:
I would rather go to a library than a party --or-- I would rather go to a party than a library

I don’t particularly enjoy reading fiction --or-- I particularly enjoy reading fiction

I find it hard to make new friends --or-- I find it easy to make new friends

Their autism is so profound that they're in need on constant care and supervision.


These are also the people who should be institutions somewhere as 40, 50, and 60 year olds whose parents are no longer able to care for them.


These are the people I'm waiting to see.


Anne Dachel
Media

With any government you have to have a Dept. of Cover Up with all its branches. I forget the name of the branch that SB-C heads.

Everytime I read another vaccination/ exoneration study, the word Cover Up keeps going around in head to the melody of lolly pop. Coverup, coverup, oh cover-cover-cover

http://www.lyricsmode.com/lyrics/d/daddy_cool/lollypop.html

Just because we don't get a toxin from a vaccine, doesn't mean a toxin from other sources doesn't damage the brain in like or similar fashion in this population? Sushi anyone? Tuna? Amalgams? Coal Fired Plants? Depleted Uranium? Fluoride? Chemotherapy drugs? Tylenol? AN INFECTION of any sort? , Autoimmune issues? Thyroid dysfunction in utero?, Lyme Disease? Metabolic crisis anyone? How about a birth injury? lots of ways to get autism, lots. Subclinical scurvy anyone? How about clnical vitamin D Deficiency? Iron overload or Hemachromatosis? Mold exposure? Pesticides? Endocrine Exposures, or BPA? PLUEEZ, Simon, you can do better than that? An I am JUST a mom....

Well in 78 & 79 my 2 oldest sons had al shots & are ok BUT then in 89 my 3rd. son now 20 was diagonized with austim at 2&half all thing associated with austim happen to him so this deal about taking the survey at age 16 his 1st secizzer almost cost him his life & that was 2 weeks after the mmr i said then & will cont to say & know that the mmr caused his austim he was totaly different the very nite he had it then my 1st. 2 older sons were.

Are you ready for the next media headline?

"Vaccines Vindicated"

subtitled:

"New research from the UK now totals 15 studies finding no relation between autism and vaccines"

Nevermind that the Keystone Cops could have prepeared a more thouough study.

Thank you, John. The extraordinary cavelierness with which Simon Baron-Cohen flipflops his theories caught me sideways today. So I guess he's scrapped the "assortive mating" theory of increased prevalence--i.e., geekettes accessing higher education because of changes in gender roles and mating with geeks to create little Rainmen? And no more IT geeks on planes traveling abroad and mating with hapless women who assume the autism-gene-carrying geek's "strangeness" was simply "foreigness"? He's now just going with the "it's always been with us in these numbers" line? And when the rate becomes 1/20? What will he say then?

What's the point in sticking to one lie when there's such an array of possibilities once you leave the confines of truth?

I think the study was very well "designed" to achieve the outcome ordered up by pharmaceutical interests. It's official-- Simon Baron-Cohen is as corrupt as they come.

The AQ test is itself flawed.I would say it's a lot of BS.The fact it is taken at all seriously,is a prime example of how those who practice the the deadly,yes deadly,ideology of neurodiversity, have become the is being accepted as the determining body for all things autistic..The AQ test is meant to determine Asperger's, not the more severe forms of autism.

Simom Baron.Cohen,is a known neurodiversity advocate,and activist.Perhaps this is the reason why,medical issues aside,there is no mention of any of the obvious behavior,like stimming, eloping,head banging or self mutilation ,anywhere in the AQ.Compare the AQ to the massive forms you have to fill out when you first see a DAN! doctor.

hera said:
And on a side note, it never ceases to amaze me how many scientists have apparently not yet realized that people with severe autism are not able to fill out questionaires.

I can barely write myself.You should see what a mess the forms I sent him were like.

I personally have a hard time believing autism is older than the 1920s.There were autistics in the Boomer and Generation X generations,but most of us were not diagnosed with autism at the time.I'm not talking about the bogus BSers,who have been diagnosed with Asperger's as adults.I'm talking about people who were diagnosed as retarded,or,like myself,had a diagnosis of developmental delay,and a mess of other psychiatric,and developmental problems piled on top of it.I did not have an autism diagnosis as a child,but I spent a large per centage of time in special ed,seeing psychiatrists,and doing what would now be called occupational therapy.

In 1971,when I was eleven,my mother and I were called before a tribunal at a county school building.The point of which was to get my mother to agree to put me in Rosewood Center (Google it.)My mother refused,which is why I am here now,learning about biomed,and seeing a top DAN! doctor. I do not not know what my diagnoses were.The county destroyed my records in 1979.

When I was in school,there were not classrooms full of autistic children,but often there were two or three kids with ASDs other than Asperger's in a school of hundreds of students.It takes an exceptional person,who has a more severe form of autism to seek out a diagnosis for autism as an adult.In my case,it was because I was seeing a doctor for all of my other childhood onset medical problem,and getting nowhere,who told me I was lying when I said I believed I was autistic.In order to prove me wrong,which is what he said at the time,he arranged a full autism evaluation with the head of developmental psychology at the biggest hospital in the state.This was no filling out a rinky-dink AQ form,this was the full nine hour evaluation given to children.

What he found was I was basically at the higher functioning end of Autistic Disorder,much worse off than I thought I was going in.

A better sudy can be found at:

http://www.iancommunity.org/cs/ian_research_reports/adults_on_the_autism_spectrum_september_2009

I have to disagree. I'm 37-years old and was just recently diagnosed with Asperger syndrome. So, yes, it's possible for an extremely high-functioning adult to go undiagnosed for some time. Growing up, I was considered an "odd ball", "out cast", "rude" because I did lack social skills. They didn't diagnose it back then.

My youngest son is a carbon copy of me as a child, and he has PDD-NOS (he displayed symptoms way before he had the MMR vaccine). My uncle was diagnosed with a spectrum disorder (he never had the MMR vaccine) as an adult as well, and his little boy has Asperger syndrome.

I saw this when it broke on the BBC. It was a Kafka-esque article. A new count of prevalence in autistic adults is the same as some but only some of the prevalence counts for youth, therefore absolutely nothing that has started happening within the previous generation could possibly cause autism? And no one even raises an eyebrow at suddenly a 1 in 100 autism number for adults? Somehow that's not the news? Bizarre.

I ask the most pertinent question of all... is the govvernment ever right? Are the pharmaceutical companies, CDC, NIH, FDA, ever right? Are they looking out for you? If we think we are, we truly have become sheeple. Bias, conflicts of interests, powers that be, all want to hide away from known facts. You can manipulate data until black is white, white is black. All I know is autism is becoming an epidemic, I see it, and hear it and feel it. Damage done on kids via vaccines, food stuffs, fluoride, toxins of all kinds. This is not just happenchance. This is designed to depopulate the earth. Get a clue people, you mean nothing to the elite. Our outcry hasn't reached to the levels where people take notice, apparently. Maybe our stance that vaccines "can be made safe" is the entire problem. Show me scientifically if that can happen? Statistically, Cell mediated immunity has lowered in the last few decades, due to these insults. We need to recognize that GENETICALLY speaking, we are no longer able to handle these insults...just like the fish in rivers who have male and femal parts in one fish. Do we think we are that removed from the food chain? The only thing that we can do, is refute findings like this, find the holes, find the junk, and throw it back in their faces, better yet, the thing they fear most is the loss of perception that "we are in this together" and, loss of income...so, in my viewpoint, either we poop or be off the pot so to speak, and BOYCOTT all vaccines. That's going to make them finally notice.

Borderline absurd . . .

Look around - how many autistic adults in our age range (Gen X, Boomers) do we see?

Makes me ill to see these "studies" funded and then trumpeted as "proof" of a pre-ordained conclusion.

Child autism is up 40% in the town of Reading, UK. Or is it that silly silly teachers never noticed those difficult kids with special demands in the past? Ignored them, sort of. And those 186 special, demanding, difficult, screaming kids just managed to get through without any support, without the statement of Special Educational Needs, without even getting noticed by anyone?

http://www.getreading.co.uk/news/education/s/2057692_child_autism_up_40_per_cent_in_reading

p.s. I would like to remind a casual reader that obtaining a Statement of Special Education needs in the UK is EXTREMELY difficult and time consuming. Many children with obvious (autism-related) impairments and disabilities get refused the Statement out of hand, forcing their parents and schools to fight through appeals and tribunals. It is very doubtful that these pending cases were included here, thus the real number of children with autism requiring Statement of special needs in the town or Reading might actually bit a lot higher than 186! higher than 40% increase!!!

Did it have in the study how many of these adults had or have epilepsy. Nursing books says 1 out of 5 autistics have epilepsy?

A silly study they should be ashamed of, and yet, it makes no difference how many flaws are picked out because the bottom line is this study is linked to prestigous Cambridge.

Wow, thank you for breaking down the study.Was going to check how they defined autism,and the number of people involved.Only 19 "autistic" people studied? Oh great.

This study is obviously extremely badly designed.
Wondered if there was a problem with it when it was noted that these "autistic" people required no more medical services than the average person..Dysfunction affecting your life is one of the criteria needed to get an autism diagnosis..

And on a side note, it never ceases to amaze me how many scientists have apparently not yet realized that people with severe autism are not able to fill out questionaires.If there are institutionalized autistic adults out there, this study would never have captured them anyway.

Instead it seems to be equivalent to looking for the number of blind people in the adult population, by sending out a questionnaire asking people if they have ever thought they might need reading glasses; and then commenting that these people surprisingly,really did not need any extra services..

Am pretty sure that if I had tried to pass off a study design like that in grad school, I'd have failed statistics. Or at least had to rewrite the study,stating it was designed to identify only high functioning adults, who by self report had some of the traits of aspergers.

Thank you John Stone for this very detailed summary of the flaws in yet another report trying to illustrate a disassociation of MMR vaccine in autism.
I wonder what the upper age limit of these cases was? I’m remembering the government catch up scheme of 1994, when teams went round schools administering MR to teenagers who were born before 1988. The oldest of these will now be 33 years old. No one under this age should be included in this study.

Great post John!

I sent you this via email an hour ago, but I want to repost it here so everyone can see and give their feedback. I wish I sent you this sooner but I was so caught up with assignments that I simply did not have the time to look the study over as critically:

The vast majority (97-98%) of people with AQ scores from 5-9, who would not have been autistic at all as the average AQ results for NT subjects is around 16 would have been excluded from the final sample as they would not have been selected for the phase II ASOD interview. Therefore they would not have been included in the final results.

If you go to page 29:
http://www.ic.nhs.uk/webfiles/publications/mental health/mental health surveys/Autism_Spectrum_Disorders_in_adults_living_in_households_throughout_England_Report_from_the_Adult_Psychiatric_Morbidity_Survey_2007.pdf

You see that only people with an AQ score above 10 were even likely to be selected for the second phase, and only those with scores of 12 and above were definitely qualified.

But the study only included people with AQ scores of 0-4 who didn't make it past the first phase at all and people with AQ scores of 5 and above who did make it to the second phase and completed their ASOD interviews, even though the vast majority as I've said previously of people with AQ scores from 5-10 were not selected and therefore would have been excluded from the final sample. Yet, the authors then extrapolate their findings from their final sample to the original sample that participated in the first phase as well.

So, it looks to me like we have a serious case of selection bias here in favor of getting a high prevalence result.

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