to be cross my ds has measles because other parents didn't vaccinate their children

[snickersnack]

He's 11 months old, poor little thing . Fortunately he's going to be ok - he got off quite lightly, I think - but it was scary and he was really poorly for a day or so. Spent 10 hours in A&E yesterday while he had chest x-rays, blood tests, IV fluids etc. Now we're just waiting to see if his sister,who's 2, gets it - she's had one dose of MMR already so fingers crossed she's immune.

We live in an area where immunisation rates are among the lowest in the country. Now I have to go and tell all parents of the other babies he's met recently that their children might be at risk as well...

this from the US Centers for Disease Control is interesting given the recent payout for a child's autistic like condition being triggered by the MMR.

I know one person who is being tested for mitochondrial disease and has autism but I wonder whether it is more widespread. I did see 20% mentioned somewhere but that could be a figure plucked out of thin air. My eyes widened at the mention of a movement disorder as I was planning to ask the paed whether she thinks ds1 might have a movement disorder next time I see her (he makes strange movements - kind of gets stuck in spasms - she's previously ruled out seizures). Especially as ds1 regressed after an illness. Recently there have been a number of publications concerning catatonia type conditions in autism as well (a few published by Lorna Wing so biggish names).

Flexi, I don't think your answers are good enough really, for someone so sure that it's not MMR. Does it not puzzle you?

Autism was virtually unheard of. Now it is on everyone's lips. Several hundred parents had enough evidence that their children regressed after vaccination to launch a lawsuit. Many others have not pursued claims but say their child was also affected.

Does it not interest you, and puzzle you, that in the years since the MMR has been introduced, autism has shot up, and that parents have this direct evidence of regression?

How can you say: that's not it? How can you say: we don't know what it causing this -- but we know it's not MMR?

How could the government say it, before any further research was done? How could they possibly know?

Flexi just read most of your previous posts, and I can't work out if you are sure that MMR has not triggered autism in children.

But I am amazed that this vast, vast epidemic can be brushed aside with a categorical denial -- whatever it is, we know it's not vaccination induced.

I think they have shown that MMR isn't causing the increase, not alone anyway.

I did see a paper in Gut journal 2006 giving a model that would explain the increase in autoimmune conditions such as MS, type 1 diabetes (which has also increased massively) etc. It didn't mention autism - although many think in some cases it is autoimmune. Anyway the model was very similar to that proposed by Wakefield and others to account for one way in which autism might be triggered. Basically the gut is leaky for some reason, so things get through which shouldn't. Various different factors could make the gut leaky- in the case of the MMR children and according to Wakefield's theory that would be measles virus. But in other cases it could be something else and the gut might be leaky in a different way. What actually passes through and then triggers the autism or other autoimmune condition could be anyone's guess and could be a wide range of things.

It made sense to me. Especially for our family. Both ds1 and ds3 have leaky guts. Their 3 year old cousin has type 1 diabetes (as does dh's sister). DS3 is fine so far, but hasn't had added potential risk factors such as gluten or antibiotics. (If you saw my thread of a few weeks ago he's gone gluten free again). Interestingly if you type type 1 diabetes and gluten into google you'll get a whole load of published papers concerning a leaky gut and gluten in combination triggering type 1 diabetes. It's like reading various autism papers. Milk proteins have also be suggested in combination with leaky gut to trigger type 1 diabetes - ditto autism.

Even that won't explain all cases, better diagnosis will feature in some, difficult births others, but it might explain the increase in regressive and severe autism.

Interestingly CoteDAzur due to the increase in availability of antenatal testing - more pregnancies of babies with down syndrome are being terminated than are being born. In 2002 - first year it was seen - only know cause that was the year my dd1 (who happens to have down syndrome was born ) more pregnancies were terminated because they knew the baby would be born with down syndrome. So whilst childhood and infant mortality is on the decrease - not for all groups.

I am sure better diagnosis does feature Yurt, and I certainly wouldn't blame MMR for all of it, not at all. I'm sure thimerosol has played a part, and the connection between the autistic spectrum and the large increase in autoimmune disorders and allergies (also epidemic, it seems) is very interesting.

Yurt1 I'm sure you have seen this but have you read any of Trevor Gunn's work? He is convinced that vaccinations cause the gut wall to leak and are partly to blame for allergies.

You can see that effect in ds1's school as well eidsvold.

I haven't read any of Trevor Gunn. Will look him up. Thanks.

But yurt, gluten has been part of the human diet for around 12,000 years. Why do you think it should (might) be involved in increasing cases of autism now? Certainly in many societies where bread forms one of the staples of diet, autism is NOT on the increase. I was just talking to my friend who grew up in the Amazon, for example, and he was saying just how much bread they used to eat (every meal), but never saw a case of autism whilst growing up.

Also, what happened to the theory (Baron-Cohen) that autism is an extreme form of the male brain? And something linked to testosterone levels in the womb? It would be interesting, and important, I think, to know the ratio of kids diagnosed with autism who were apparently born with a disorder, and those who developed it regressively later.

Gluten has been part of the diet, but leaky guts might not have been so common. That's the general theory behind these diabetes/autoimmune/autism + leaky gut models.

It's not just gluten anyway- one sensible paper I saw about diabetes was discussing the value (or not) of gluten/milk free diets for those at risk. They made the point that there were so many potential triggers it would be better to focus efforts on repairing the gut/making sure it didn't become leaky in the first place. I think that's right, although I still keep gluten out of ds1 and ds3's diet as I can't bear the bruises on their heads when they have it.

Simon Baron-Cohen's work is entirely on HFA/AS. I don't think he's gone near a severely autistic child in his research history I don't know about AS/vHFA but I don't think his theory of mind stuff really fits with severe autism anyway. His view is that someone becomes autistic because they have an innate problem with theory of mind. My view (not just mine- others too- Stuart Shanker has written a great piece on this) is that in the case of severe autism at least the main problem is with sensory processing- this prevents co-regulated interactions and that will of course affect the development of theory of mind.

Autism is lots of different things. There's actually been a bit of a move very recently to reflect this in the literature. SBC's work does reflect AS well I think, (from the limited amount I know) but it I really don't think it applies to the ds1's of this world. I want to ask him his view about how he sees the research I'm doing (on the severe end of the spectrum) fits in with his work, but I want to wait until I have a completed manuscript to send, or until I can corner him at a conference or something. For example an extension of his work has led to the suggestion (not by BC AFAIK but by people using his theories) that children like ds1 remain mute because they have zero/no theory of mind at all. It's just not true, and you can see that in daily interactions but very few people have looked at this end of the spectrum. If you read the Psychology type literature (and other types as well actually) I reckon over 90% relates to HFA/AS. It's not even clear whether its the same condition as say non-verbal severe autism (controversial perhaps but I remain to be convinced).

If you read the (very limited) literature available that has been written by non-verbal people with autism - they tell a similar story. Mainly of movement difficulties, of problems initiating movement and responses, of real problems initiating voluntary behaviour and sometimes of processing things like speech/vision etc

Some people with higher functioning autism (and sometimes AS) describe similar difficulties with sensory processing, but less so with initiating movements.

The whole sensory processing side is a very neglected area of research though which is a shame as I don't think you can understand autistic behaviours without considering it. But things like executive function have been studied in people with HFA. IN fact the people really affected by executive function difficulties are likely to be the more severely affected, but this group just doesn't get worked with (because it's very difficult to for all sorts of reasons, both practical and ethical).

I am afraid that I haven't read all 28 pages but I thought people might be interested in this: this page
It is from Veronika Robinson, editor of mother magazine who is against any vaccination her reasons are on this page:this page

You have to scroll down to Vaccination awareness and then further down to Thursday August 30th 2007. I was very firmly on the side of vaccinations but I am no longer so sure.

I worked for a while in the research section of a university/hospital department of developmental neuropsychology where studies were being carried out on various childhood neuropathologies, including autism. They did tend to stick to HFA and AS subjects, as you say. But the work on speech and language was v. interesting. When you talk about non-verbal autism, are you referring to lack of speech, or absence of any form of communication? (As I am sure you are very aware, speech doesn't equal language ability). I am an archaeologist, so not too knowledgable about all this, but very interested in language ability and what role it plays in the development of our species. Also, my ds reacted quite worringly to a vaccine recently, so I am reluctant to continue until I know more....

non-verbal generally used (in autism) to mean lack of speech. It has commonly been assumed that older non-verbal children are pretty ropey in all areas of communication, but actually recent studies using a variety of methodologies are showing that not to be the case. There's a paper by Morton Ann Gernsbacher that's really interesting- a case study of a non-verbal boy dxed with severe learning difficulties who once taught to type was found to be very bright indeed.

The work I did recently I found all the children (who were in the main non-verbal or without useful language- so they might have had odd words used inappropriately)were pretty good communicators in their own settings with familiar people (again a problem with research in a lab).

Would be interested in the work your dept did on speech and language- was orginally a Zoologist so find the evolutionary side of things interesting too.

i think you should write a book yourself yurt. Honestly!

Re gluten, there is a theory that one reason for the rise in intolerances is that the faster fermentation involved in modern bread production (as little as 45 mins instead of many hours or even days) means the yeast has not had a chance to work on the wheat in a way that made the gluten more easily tolerated. I only know this from this guy and he is a baker not a scientist so it may be dodgy! But it might be one answer to PhDiva's question as to why bread is a problem now when it hasn't been for millennia.

Kathy, that is interesting!

yurt, the work done there was mainly on the FOXP2 gene, the mutation of which was identified by the researchers there as responsible for the development of language abilities in modern humans. A large family living in west London all exhibited various forms of speech dyspraxia and apraxia as well as some motor skills difficulties, and it was the study of their DNA which led to this discovery. For those looking for genetic clues to autism, this gene and the neighbouring ones are believed to be responsible in part.

The paper by Morton Ann Gernsbacher that you metion reminds me of a case (at the same research unit) where a boy suffering verbal amnesia was able to recall everything in detail when he wrote it down, but when asked how his day was, he didn't have a clue.

also, re: non-verbal forms of communication, some studying the paleolithic era believe that sign-language developed before verbal language (hence, for example, the shrinking of the iris in the modern human eye in order to display more white area, so eyes could be used as a very effective form of communication, etc..). Has any study been done on the alternative ways autistic-spectrum kids communicate?

The case study by Morton Ann Gernsbacher probably related to the boys very severe dyspraxia/apraxia (probably common in a lot of severe autism cases)

I know a tiny bit about the FOXP2 gene, wonder how widespread it is.

I'm doing research on the ways severely (including non-verbal) autistic children communicate

Would do Ruty- but it's taken me ages to put together a 5000 word paper, let alone a book

Sorry am just dashing off out (to meet a mumsnetter!), but will come back to this very interesting discussion later.....

To answer earlier questions, I really don't think the MMR is the cause of autism. Autism is a very large diagnostic category and I think it would be far too simple to put down all the autistic cases to one vaccination. I think that we will ultimately find that there are many causes that happen to cause a similar disease picture. If you were under the impression that I am not sure about my position I hope this clears it up. I have perhaps been a little vague as I don't want to offend or upset people posting on here as I am aware that there are some very passionately held opinions.
Also, in reference to my comment about improvements in child mortality, it would seem reasonable that mortality is more improved in children with disabilities than the general population giving rise to a greater proportion of these children surviving to diagnosis and hence increasing the number seen in the population.

fleximum - re "it would be far too simple to put down all the autistic cases to one vaccination."

Nobody is saying MMR is the cause of all autism!

What Wakefield suggested and parents of many regressed children argue is that some children (a small minority) regress from normal to severely autistic following MMR.

This was said many times on this thread.

at the success of government's Straw Man tactics ("See all these studies show rate of autism doesn't change (much) with/without MMR") that the question has to be reminded over and over again.

I was just answering the question put to me earlier in the thread which seemed to be suggesting that. My opinion - and I stress that it is just my opinion - is that there is yet to be any good evidence that the MMR is the cause of any autism. Please don't all jump in at once with the data and websites and books. I have seen the references in this thread and when I have time I will look at them all, but from the information in the general medical press, I cannot see clear proof of a link at the moment.

Re communication & autistic people.

Did you see last month's Wired magazine?

I think you will find this article interesting.

flexi - I wish there was lots of data to throw your way. Following the Wakefields very public professional crucifixion, there is (that I'm aware of) no direct follow-up of which children might show severe reactions that might lead to regression to autism following MMR, and why.

I don't believe in anything without proof, but I also know that some pharmaceuticals have been administered as 'safe' for years before scientific studies were done to prove and explain the damage done to the victims. Meanwhile, anecdotal evidence was all women had. (ex: Thalidomide

I wouldn't even listen to 'anecdotal evidence' for existence of UFOs, validity of astrology, or even the soi-disant existence of God.

However, when talking about permanent damage to our precious babies, the risk is just too great to ignore, and until science steps in, all we have is anecdotal evidence from parents of affected children. I cannot readily conclude that all these people, who are obviously intelligent and articulate parents (like yurt), are collectively hallucinating, or are madly looking for someone/something to blame for their misfortune. Can you?

"I cannot readily conclude that all these people, who are obviously intelligent and articulate parents (like yurt), are collectively hallucinating, or are madly looking for someone/something to blame for their misfortune. Can you?"

Wish I could have put it like this -- encapsulates it perfectly.