Video of Dr Wakefield speaking at the annual meeting of the Association of American Physicians and Surgeons. This story IS going to come out.

[Beachcomber]

Video of Dr Wakefield speaking at the annual meeting of the Association of American Physicians and Surgeons. The story is coming out in the US.

Issues that come up of particular note;

The UK government's decision to use Urabe strain MMR despite information showing it to be unsafe.

Information showing Deer's BMJ articles to be defamation.

Info on how the single mumps Urabe vaccine did not cause meningitis in the way the Urabe MMR did - clear evidence of viral interference in combined live vaccines. Posing a serious question over the safety of the MMR vaccines.

How Professor Walker Smith alerted the government to the work at the Royal Free and the potential problem with the MMR in 1996.

How Dr Wakefield wrote a 250 page report on the inadequate safety data on the MMR, to highlight the problem and argue the case for single vaccines.

A copy of the ethics committe approval for the Lancet case report.

So you don't know enough about it tonhave an opinion, butnyou know thatnthe highly complex and technical evidence was fabricated?

Yes, I do know that evidence was fabricated and certain people lied in order to discredit Wakefield. However, I cannot say whether i believe that Wakefield's findings were right or wrong.

I think I understand your point of view Malibu.

You are saying that you don't know whether Wakefield et al's scientific findings are correct, but that you were witness to some dishonest behaviour with regards to the disciplinary/political side of things.

Is that a fair understanding?

Which certainly with regards to the GMC, is totally valid - the GMC did not examine the validity or quality of Wakefield's scientific findings at all. They were perfectly clear on that. The science in the Lancet paper has never been shown to be wrong (forgive me I do not count Deer's witterings in the BMJ which only show that he does not understand the processes of clinical gastroenterology, despite having them spelt out to him at the GMC).

The GMC went after ethics and conduct. There is no judgement made on the contents of the paper itself.

Although the recently published Lewis Report, gives evidence that a report on the diagnoses of the Lancet children had been prepared for the hearing, (saying very similar things to Deer) but it never came to light at the GMC. Which certainly has me asking some questions.

Malibu can you expand any on the areas that you feel were not quite right? Obviously you would need to be very careful what you said on a public forum and not mention specific people. You have to go down the, 'it was my opinion that perhaps blah blah blah' route.

Well here's one way of tackling the problem of autism.

The American Psychiatric Association (APA) is going to change the definition in the DSM criteria. That will cut the numbers down quick sharp. It won't help the children or treat them so that they lose their diagnosis. No, it will just disappear them away. Which of course will render all epidemiological studies monitoring the rates of ASD useless.

Bang! and the autistic have gone!

Good work guys!

No one at the APA is able to tell us what causes autism, how to cure it, or how to prevent it, but they seem happy to again play with the definition. We need to ask why this is happening.

The truth is, many people want the autism epidemic to somehow disappear and changing the definition is one way to do that.

These moves will probably mean that a lot of children will no longer be able to access the services they need. The insurance companies in the US are gonna love this one.

Why does the term 'adding insult to injury' spring to mind?

I have only skim read your link, Beach (really shouldn't be here - far too much to do!), but the DSM gets re-wrtitten every so often, and the diagnostic criteria tightened/relaxed/tinkered with.

in theory, the proposed changes to the dx criteria for ASD are, in one way, a good thng. they propose getting rid of the distinction between AS/HFA/autism, as a dinstinction of severity of need. which is a good thing. as it stands, it is impossible to tell the degree to which an individual is affected by their ASD from the dx, although that does nt stop many people making some quite big assumptions about how an individual is affected. eg a person could have AS, asumed by many to be the 'milder' end of the spectrum, but in reality be more affected by sensory and emotional issues (to the extent that they cannot live their lives fully) than my dd is ('severe' ASD)

but yes, in reality, it is a way to tinker with the numbers, claim over-diagnosis for so many years was the cause of the dx numbers shooting up, while not collecting data on the different subsets of autism (and we know that autism is not one thing).

Thanks for commenting silverfrog.

I agree with you that 'the spectrum' is a clumsy tool with regards to need.

But then I don't think ASD as a condition should be 'owned' by the psychiatrists and their DSM. As you say autism is not one thing, and with the increasing knowledge about the physiological elements, we need to stop the pretence that autism belongs to the shrinks.

But that means opening up a whole can of worms.

Forgot to say - I agree with you that this is a way of not examining too closely the different manifestations and subgroups of this thing we call autism.

Beachcomber, I've read the sulphation information (on the autismfile site)- I understand it, and it seems a plausible root cause of both autism and the bowel problems.

But you do realise that if this sulphation theory is right, and it does sound promising; that would mean autism is essentially a genetic problem...?

As silverfrog says, surely more accurate diagnosis of autism is a good thing? And, in fact, more likely to separate out different sub-groups instead of lumping them all in together.

By the way, your age of autism link says, "Since many experts still adamantly claimed that there was no real increase, someone somewhere should have been eager to find the misdiagnosed/undiagnosed 40, 50, and 60 year olds out there with autism, especially those with classic autism whose symptoms are undeniable. This was never done.", but on my mammoth google quest yesterday this turned up. I guess they missed it.

And while I'm clogging up the thread ... said mammoth Google quest was because it occurred to me yesterday that the UK is now an experiment in MMR removal. Vaccination rates fell from, what, 95%-ish to 80%-ish after MMR-gate?
Enough to detect a rise in measles cases, certainly.

I wonder if autism rates in the UK fell over that period? I couldn't actually find up-to-date info on the first 2 pages of google results, and got distracted by other stuff.

Boulevard - it will do the exact opposite, sadly.

several distinctions in dx will be got rid of, and all 'autism' lumped together under one dx.

instead of actually separating out, including proper criteria (sensory for eg), and splitting up and defining in terms of need rather than umbrella headings (as done now).

hte new DSM criteria will do nothing to address the 'severity' of disability (for want of a better way of putting it) which is what has been one of the problems so far with the separate (and not always making sense) dx's at the moment.

I always took that the was a recent massive increase in people "on the spectrum" as a given. Is that not necessarily true? Are there any bigger studies than the one Boulevard linked to?

from Boulevard's bbc link - the UK dx rate in 2009 was not 1 in 100. it was more like 1 in 80 (talking children dx). I cannot remember exact numbers (sorry), but the highest the dx rate in the UK has been is 1 in 64, I believe (again, children).

the rate in the US was around 1 in 100 at that time, iirc, but comparing UK adults to US children's dx rate would not make sense.

1 in 100 is often quoted, as it is easy to remember. but it has not been that figure for some time.

Do we have any sort of figure for adults?

apparently 1 in 100, seeker. according to that study.

but i haven't looked into adult numbers thoroughly. and most of the stuff I am looking at is talking about current dx rates, or rates in children etc.

Here you are seeker

Right, now I'm even more confused. It looks as if historically 1:100 people are on the spectrum, but now 1:80 children are being diagnosed. I thought there was much higher %age increase than that. Am I reading it wrong?

depends on what you mean by 'historically', seeker.

go back 15, 20 years and the rates were more like 1 in 10,000 (or less)

I though "autism" as a separate and distinct diagnosis only came about in the second part of the last century?

not sure where you are going with that (as in, don't see the relevance to rates today, or in the 1990s, for eg)

Aside from my earlier posts, this subject is very interesting. I have just got back from the US and the reclassification story was all over the news. It really does seem like a cost-saving measure.

So, is it really the case that 1:100 are autistic? That is shocking. I remember when I was at school there was one girl who I guess you could describe as autistic maybe, just one. I asked my DH and he couldn't recall anybody he knew growing up who would fit this diagnosis. To hear that it is now 1:100... How? What has happened? What other theories are there apart from vaccinations? Sorry to bring your debate down a little, but a brief summary might be helpful to those of us who are interested but not up to speed with the latest theories and statistics.

Thanks.

Ok. I am going to be flamed for this. But it seems to me that if I, for example, hqd been a child with autism in the 60s, the chances are that I would not have been diagnosed. I would probably hqve been either not diagnosed at all, or given one of the hideous blanket terms used for mental disability at the time. If I had been at the high functioning end, there would have been plenty of jobs I could hqve done ( in a time of full employment the are always loads of jobs that people with particular difficulties or skills could do). If I was severly affected, then I would just have been istitutipnalized, with the people with schizophrenia and a wide range of other conditions. Maybe now, as a middle aged woman, I would be recognising myself in the descriptions of the spectrum that are available now. I know this is happening to a lot of people. I know tht many people reject the "increase in diagnosis" theory, but it does seem to make sense at some level.

Boulevard, Age of Autism is an American organisation (although they do report on UK issues too). I don't know if the writer is referring to the US with that phrase, but I imagine she is as she was speaking about autism rates in America.

You could always alert them in the comments to the survey you are talking about - it may be of interest to them. Having said that, it would be problematic to extrapolate anything about US adult rates from a UK survey.

I found the survey itself problematic on many levels. Here is a link to it.

In particular the sample size is very small. Of a population of just over 40 million people, the survey did the following;

Conducted an initial phase 1 interview with 7461 people (a questionnaire).
Selected 849 people from that questionnaire as scoring high for possible autism.
Conducted phase 2 assessments with 630 of those 849
Considered that 19 of the 630 fit the survey criteria for autism (using the Autism Diagnostic Observation Schedule).

Now 19 out of 7461 is not 1%. The survey discusses weightings used for a whole bunch of factors that I kind of skimmed over. I guess this is where they came up with the 1% figure. (You'll have to read those yourself if they really matter to you I'm afraid!)

I also found the method used to assess Verbal IQ to be problematic - interviewees were required to read for this. The words they were asked to read were difficult, some of them uncommon words and many of them with non-instinctive pronunciation. A person of limited schooling would have struggled with this. A person with limited literacy skills would have found it nigh on impossible. The score was in relation to how well the word was pronounced. Perhaps this technique is standard but it seemed highly problematic to me.

This survey was just that; a survey - it was an assessment which found 19 cases of adults who could be considered to be on the spectrum according to the methods of the survey. They did not use the DSM criteria (although to be fair, the ADOS used may well be identical to the DSM criteria. I don't know.). And they did not make a diagnosis.

What this report did not do was count adults with an autism diagnosis. It surveyed a group and made an assessment based on survey criteria.

I found the reporting in the BBC also highly problematic!

Particularly this;

Latest autism figures should dispel any fears about the MMR jab being linked to the condition, say experts.

The NHS Information Centre found one in every hundred adults living in England has autism, which is identical to the rate in children.

Mmm, not quite that simple on reading the actual survey.

Personally I didn't like the way this very limited survey was used to make some rather large claims. I also didn't like how it was used as an MMR pushing vehicle. The word 'survey' did not appear in the BBC article although 'study' 'report' and 'findings' all featured.

However if this survey raises the issue of adults with autism, who may not be getting the support they need, then that is something very positive.

Don't have time to comment on the sulphation stuff. Not ignoring you with that.

Hi again Malibu. You said the following earlier and I didn't have time to answer you. Work done, kids in bed so have a moment now!

How? What has happened? What other theories are there apart from vaccinations? Sorry to bring your debate down a little, but a brief summary might be helpful to those of us who are interested but not up to speed with the latest theories and statistics.

These are very good questions indeed. You are not bringing things down at all, you are asking fundamental questions. Personally I believe the data which shows ASD rates to have risen significantly - there are other posters who will disagree and quote different data to mine.

The main reason for the disagreements over whether there are more children with autism, than there used to be, is really to do with disagreements as to the cause of autism. I think regressive autism is a physiological illness that is the result of an environmental insult (or trigger if you prefer). There are others who disagree with this analysis and they say that autism is a genetic disorder and a psychiatric condition.

In my mind, there is no doubt that genes play a role in the development of autism. However, twin studies have made it seem likely that genes play only a very limited role. To use a crude analogy - 2 children catch chicken pox, one of them sails through the illness and is fine. The other suffers serious complications. There will be many reasons why the children deal with this illness differently - nutritional status, age of exposure, etc. There will no doubt be genetic factors too. But without the environmental trigger of the chicken pox the complications in the second child would not have occurred.

If autism rates are rising significantly, that poses a problem with the 'mainly genetic' cause argument, as human genes do not mutate quickly enough to account for the speed of the apparent change in rates and manifestations of autism. Hence why so many studies have been done to show that autism is no more common now, than it was in the past.

I think there are various environmental triggers for developing autism - we know that babies with congenital rubella syndrome can be born autistic as a result of prenatal rubella infection in the mother for example. I think the balance of evidence point to vaccines as another trigger. In fact we know this can happen because it has been documented in various court settlements, such as those of Bailey Banks and Hannah Poling. For me the question is not 'do vaccines cause autism' but 'in how many children have vaccines caused autism and what can we do to help those children and prevent more children being damaged in this way'.

There are plenty of people on here who disagree vehemently with my opinion. I shall leave it to them to tell you about the other theories which exist to explain what has happened to affected children. I know of no convincing ones.