The Great Autism Rip Off!

[Neil Young]

Interesting

 

http://www.mailonsunday.co.uk/health/artic...e-children.html

[sesley]

its sad that these evil so called Doctors if they are Doctors feed on desperate parents who think there is a cure for autism and can't accept their child for who they are. these doctors are no more than those people that travelled the Wild West America with witch doctor potions they just boiled up in a caulderon to cure people of ailments and often ended up killing them with poison.

[lorryw]

Its a very emotive subject. So many parents are desperate and will try anything to find a "cure". Ive been around the block a few times now (my sons almost 23) and I feel incredibly sad when I read of some of the horrendous "cures" parents inflict on children. I was asked to leave one particular website after voicing my concerns and I was subjected to some horrendous on line bullying. I still feel that some of these cures are bordeirng on child abuse.

[CEJesson]

The act is despicable

 

How can this be allowed?

[bid]

Not before time, IMO...

 

Bid

[Canopus]

Snake oil salesmen sums it up.

 

Oh why, oh why isn't anybody doing something to crack down on these rip-off merchants?

[pearl]

Neil, I remember many years ago asking you about signing up for a "Son Rise" course. Your sensible advice to leave well alone saved me a four figure sum and much heartache

 

I do remember that feeling of desperation & casting around for something, anything, that might help, if you choose one route, you cut your child off from others & maybe waste years, & at that time there was little advice, at least you can get factsheets from the NAS these days & do a bit of comparison.

 

Anyhoo as far as alternative remedies goes I'd like to know what Jacquie Jackson is on, she has no right to look so gawjuss in addition to raising all these kids & lecturing around the country, she could at least have the decency to look as kn*ck*r*d as the rest of us!

[cmuir]

Hi

 

One thing that utterly disgusts me are people who cash in on the vulnerability of others eg desperate parents seeking answers and improvements to help their children and improve family quality of life. Thought this article was very interesting, considering It featured Jacqui Jackson...

I recollect only too well buying her book and her son's at a time when I was at my lowest, desperately seeking advice, answers and ultimately a diagnosis for my son. In my opinion, both books told me nothing I didn't already know. I was seeking the benefit of her experiences with her kids eg how they behaved, how she managed them, was there anything she found helpful?, hope for the future, etc. Instead, I felt like I'd been robbed out out �24!!!

 

Caroline.

Edited June 1, 2008 by baddad
edited in line with forum guidelines

[bid]

Caroline, I have to say she makes me feel uncomfortable, too

 

Bid

Edited June 1, 2008 by bid

[Cat]

Yes well the Jackson's books don't really tell it like it is - saying no more for once

 

Cat

Edited June 1, 2008 by Cat

[Flora]

Cat

 

Oooh, tell me more? I'm interested.

 

Flo'

[mossgrove]

Flora and Cat

 

 

If you are about to discuss what I think you are about to discuss, please do it by pm !

 

Simon

Edited June 1, 2008 by mossgrove

[mossgrove]

It was an interesting article. Refreshing to see such an article in the the Mail who had developed an unfortunate habit of printing whatever Andrew Wakefield told them was true, even when it was plainly preposterous.

 

What underpins all of these treatments (Chelation, ABA, dubious injections and the rest) is a fundamental misconception that there is a 'normal' child trapped inside waiting to be freed by whatever treatment is flavour of the month. In truth inside every autistic child is an autistic child. That is not the same thing as saying there are no interventions that will help a child with the issues they face, there are. But there is n 'magic wand' they will make it all go away, and the longer I spend with Autism the more I think it is right that such a magic wand doesn't exist.

 

Simon

[Flora]

Flora and Cat

 

 

If you are about to discuss what I think you are about to discuss, please do it by pm !

 

Simon

 

 

absolutely

[bid]

It was an interesting article. Refreshing to see such an article in the the Mail who had developed an unfortunate habit of printing whatever Andrew Wakefield told them was true, even when it was plainly preposterous.

 

What underpins all of these treatments (Chelation, ABA, dubious injections and the rest) is a fundamental misconception that there is a 'normal' child trapped inside waiting to be freed by whatever treatment is flavour of the month. In truth inside every autistic child is an autistic child. That is not the same thing as saying there are no interventions that will help a child with the issues they face, there are. But there is n 'magic wand' they will make it all go away, and the longer I spend with Autism the more I think it is right that such a magic wand doesn't exist.

 

Simon

 

Well said, Simon

[hev]

wheres that off topic smiley come from then?ive never seen that before!!as off topic is my fave place to be i cant believe i missed it!!

 

anyway sorry to interrupt the serious topic,im just off to read my news of the world from yesterday to see what posh and becks are up to

[mossgrove]

wheres that off topic smiley come from then?ive never seen that before!!as off topic is my fave place to be i cant believe i missed it!!

 

anyway sorry to interrupt the serious topic,im just off to read my news of the world from yesterday to see what posh and becks are up to

 

It's a new one just for mods. I have been desperately waiting for an excuse to use it!

 

Simon

[baddad]

 

me too

 

Simon - I agree with most of what you've said and with this article 'expose', but :

 

Refreshing to see such an article in the the Mail who had developed an unfortunate habit of printing whatever Andrew Wakefield told them was true, even when it was plainly preposterous.

 

It may be plain to you, old sausage, but it certainly isn't to me or many others whose children suffer bowel problems/vomiting/diahhorea/constipation etc...

 

Gluten and dairy free diets have helped my son - no question about it. Now whether his gut condition relates to AW's research or not, and whether the improved behaviour arises from direct (reduction of harmful peptides) or indirect (reduction of stress & discomfort associated with vomiting and constipation) factors I don't know, but I do know, and so do the medical and educational professionals who have seen the benefits, that it has helped.

 

 

[mossgrove]

I should have made it clearer what I was referring to. But I do think you are confusing Andrew Wakefields flawed research into bacteria in the gut with research into intolerance to dairy and gluten in some children with autism. As far as my ailing memory serves the latter is nothing to do with Andrew Wakefield, the only link is that both have something to do with the bowel. If you read what I said

 

That is not the same thing as saying there are no interventions that will help a child with the issues they face, there are.

 

you will see that I didn't say there were no worthwhile interventions, just no cures. So I am still not sure what part of my post you are arguing with!

 

 

The last pro-Wakefield article I read in the Mail started with an over-emotive description of vulnerable child in clinic followed by saying that if a test for bacteria in the child's gut were to come back positive it would mean that Andrew Wakefield was absolutely right about everything all along and none of the criticisms of were valid. No information was offered about how or why it would prove this. I am over-simplifying of course, but the avenging hero stuff was a bit too much to take, especially as much of his work falls apart under scrutiny. He has very cleverly turned the fact that almost all of the scientific community has rumbled him into categorical proof that he must be on to something 'because they don't want you to know'. A clever piece of PR but no substutute for scientific validity.

 

The gluten-free issue is not somthing that Andrew Wakefield has herocially bought to the attention of the world, the lead on this research is at the University of Sunderland and elsewhere and is exactly what I was talking about when I said there are interventions that may work.

 

Andrew Wakefield central assertion was that MMR caused Autism which ironically allies him with the people referenced in the article who imply that Autismis a condition that afflicts 'normal' children. Let's not forget that he too has become very rich by playing on the fears of anxious parents.

 

Simon

 

 

 

me too

 

Simon - I agree with most of what you've said and with this article 'expose', but :

 

 

 

It may be plain to you, old sausage, but it certainly isn't to me or many others whose children suffer bowel problems/vomiting/diahhorea/constipation etc...

 

Gluten and dairy free diets have helped my son - no question about it. Now whether his gut condition relates to AW's research or not, and whether the improved behaviour arises from direct (reduction of harmful peptides) or indirect (reduction of stress & discomfort associated with vomiting and constipation) factors I don't know, but I do know, and so do the medical and educational professionals who have seen the benefits, that it has helped.

 

 

Edited June 2, 2008 by mossgrove

[baddad]

Hi Simon -

 

Wakefield's theories are directly linked to those of Shattock and Savery - the 'leaky gut' wakefield highlights as a potential side effect of Measles virus is one of the explanations for morphine-like peptides crossing the blood/brain barrier.

I totally agree that emotive and under-researched articles from both 'camps' have completely undermined the validity (or otherwise) of wakefield's research, but that doesn't 'prove' anything one way or the other (well, apart from you can't take what researchers/government spin doctors or newspaper reporters at face value!).

Wakefield has never (to my knowledge) claimed that his research would find a 'cure' for autism, or that it had identified a single cause for autism. In fact, his research didn't introduce anything 'new' with regard to measles as a potential cause of autism at all - that had been widely accepted (along with rubella and, indirectly mumps - as a side effect of encephalitis occuring as a result of viral infection) for years. His research just focussed on the potential for measles introduced by vaccines to produce the same effects.

 

I don't think Andrew Wakefiled is a 'hero', and I don't necessarily even think he's right, but I think your assertion that he's 'grown very rich by playing on the fears of anxious parents' (Personally, I have no idea of how much he has in his bank account or what proportion of that money has got there by playing on the fears of anxious parents - and if I read it in a newspaper article 'debunking' him I'd take it with a pinch of salt anyway!), is a personal opinion rather than fact.

 

My original post wasn't arguing anything - because I don't know! i was just pointing it that the term 'plainly preposterous' is a personal opinion, because it isn't plain to me (or many others) at all.

 

To me it comes down to this -

Do I think that introducing three live viruses, all historically linked with autism, into the bloodstream of an infant whose immune system is not fully developed at the single most critical point in its brain's development is a good idea? No.

Do I think there is a potential risk in doing so? Yes.

 

Of course, that might, to many, seem plainly preposterous, and that's fine. Everyone's entitled to an opinion

 

[mossgrove]

Hi Simon -

I think your assertion that he's 'grown very rich by playing on the fears of anxious parents' (Personally, I have no idea of how much he has in his bank account or what proportion of that money has got there by playing on the fears of anxious parents - and if I read it in a newspaper article 'debunking' him I'd take it with a pinch of salt anyway!), is a personal opinion rather than fact.

 

According to the Legal aid peoples own published documents, before legal aid was withdrawn he had been paid a little over �463,000 in 'professional fees' for assistance given to people looking to sue over MMR. This was only one part of the payments he has recieved. He was already employed by a firm of lawyers representing people looking to sue over the MMR vaccine before his research even started, and had already registered a patent for a form of single vaccine before conducting his research reaching his conclusions about MMR Call it personal opinion of you like, it's your perogative!

 

Simon

[baddad]

According to the Legal aid peoples own published documents, before legal aid was withdrawn he had been paid a little over �463,000 in 'professional fees' for assistance given to people looking to sue over MMR. This was only one part of the payments he has recieved. He was already employed by a firm of lawyers representing people looking to sue over the MMR vaccine before his research even started, and had already registered a patent for a form of single vaccine before conducting his research reaching his conclusions about MMR Call it personal opinion of you like, it's your perogative!

 

Simon

 

Hmmm... but I don't have a clue what would be appropriate in terms of professional fees in a situation like this, or what that assistance constituted. He may have been working Cheap!

 

I'm really confused about this 'expert witness/advisor' thing, because while I totally agree that there could be a conflict of interests (but then, the whole history of research is people looking to find things they suspect, isn't it? That's why they test the hypothesis - to see whether it holds up?) the fact remains that if you wanted to sue a drugs company over MMR you'd engage the services of a professional researching in that field... It happens every day in law courts everywhere...

 

I also know nothing of patent law - I'm certainly not qualified to assess how 'normal' his actions would have been in that respect, but presumably if a large pharmacutical company was researching a vaccine and they saw an opportunity arsing from that research they'd patent it. That doesn't necessarily mean their research is flawed or manipulated, it just makes perfect sense.

 

Again, I'm not defending AW - I haven't got a clue whether his research is valid or not. From the details above, you've come to the conclusion he's a 'wrong 'un' and that his research is plainly preposterous. That's fine. I just disagree about the 'plain'

 

[mossgrove]

I didn't actually say his work was preposterous, I said the pro-Wakefield articles were, and it is pretty clear from reading them that the journalists were taking their cue from the man himself.

 

In the pro-Wakefield series of artciles that appeared in the Mail and (strangely) the Observer he said that the prescence of bacteria in the gut in the tests he was doing would vindicate his approach and prove he was right all along Which was a preposterous conclusion as it plain to anyone with even a passing acquaintance with research that it proved no such thing.

 

At the end of the day we will have to agree to differ on this one!

 

Simon

[Emum]

Going back to the Mail article, or rather the comments, was anyone else disgusted by the number of readers who commented that having had one or more children on the spectrum Jacqui had no right to go on to have more children, because of the risk that they would also be on the spectrum! As if it was a foregone conclusion that they would all be on the spectrum, or be unwanted if they were, or her personal choices about the size of family she wanted were any business of anyone else but her and her partner!

[bid]

Going back to the Mail article, or rather the comments, was anyone else disgusted by the number of readers who commented that having had one or more children on the spectrum Jacqui had no right to go on to have more children, because of the risk that they would also be on the spectrum! As if it was a foregone conclusion that they would all be on the spectrum, or be unwanted if they were, or her personal choices about the size of family she wanted were any business of anyone else but her and her partner!

it's so irritating!

 

For example, I was already pregnant with no.2 when no.1 was diagnosed with Dyspraxia, then pregnant with no.3 when he got his AS dx! So if the others had ASD as well I would never have 'known' in time, IYSWIM!

 

Grrrr!!!

 

Bid

[Cat]

My youngest was actually diagnosed before his elder brother. People have no idea how long it can take to either get a diagnosis or make someone listen to you when you say that there is a problem.

 

Cat

[bid]

The thing is, I didn't even think there was really a problem with DS no.1 when he was little...just thought he was very, very clever. It was his reception class teacher who raised a query, by which time I was pregnant with no.2

 

Bid

Edited June 2, 2008 by bid

[mossgrove]

Knowing or not before the others were born is not the issue, and no explanation of the decision to have more children should be required.

 

The whole idea is scandalous!

 

Simon

[bid]

People will always make nasty little comments

 

I even had comments when I had the temerity to be pregnant with no.4, ranging from 'Oh dear, was it planned?' to 'That's greedy!'

 

Bid

[Cat]

When I had DS3 I was quite shocked by the number of people who said 'Oh another boy' to me as if I had just lost out on winning the lottery. When did having three children all the same sex become something that I should feel sad about?

 

Some folk are just plain daft.

 

Cat

[Neil Young]

Neil, I remember many years ago asking you about signing up for a "Son Rise" course. Your sensible advice to leave well alone saved me a four figure sum and much heartache

 

I do remember that feeling of desperation & casting around for something, anything, that might help, if you choose one route, you cut your child off from others & maybe waste years, & at that time there was little advice, at least you can get factsheets from the NAS these days & do a bit of comparison.

 

Anyhoo as far as alternative remedies goes I'd like to know what Jacquie Jackson is on, she has no right to look so gawjuss in addition to raising all these kids & lecturing around the country, she could at least have the decency to look as kn*ck*r*d as the rest of us!

 

Pearl

 

Ah yes, I remember it well........................

 

Perhaps the question all should ask, parents and professionals (those who fund Higashi, ABA or clog dancing therapy!) is "If it doesn't work do I get my money back?"

 

Quid Pro Quo - as Del Boy would say!