Re: The great autism rip off (daily mail article)

July 2, 2008

Yes, definitely a word of caution for all parents exploring any treatments for

their neurologically impaired children.

Parents should always exercise caution and make informed decisions not blindly

trusting any doctor of any alopathic or alternative training. Side effects can

be dangerous even when taking something as harmless as aspirin, if certain

unknown conditions are present. At the same time many treatments do pose a

certain known and some less known risks, and doctors can never know them all

ahead of time. That's why I always say no treatment should be done without being

under the supervision of a doctor you trust. Now how do you know you can trust

a doctor? Well, that's more of a philosophical approach to life and politics

and " how we come to know what we know " .

Do we trust everything we read or what we hear on the news? In books and

journal articles? Do we have certain journals and sources we've come to trust

over time? New things are always met with skepticism and there's a lot of

resistance, but sometimes for a good reason. Other times because it goes against

tradition and established corporate interests. The internet has empowered us but

also made it very murky when it comes to knowing what and whom to trust. That's

why these lists and forums are so priceless because we can all speak our minds

and learn from each other as a community of interest.

But there are many things to consider when reading a piece of news like this.

There are always dubious practitioners out there ready to capitalize on people's

desperation like with the Cancer treatments. The thing is, it can and it does

happen with ALL TREATMENTS, NOT just those non-mainstream. Mainstream

treatments become mainstream not necessarily because they work the best or have

been " clinically proven " to be effective, though most do undergo such trials at

least in theory, but because there is usually a lot of financial and political

backbone pro pulsing them them into mainstream practices, changing guidelines,

redefining disease categories and medical practices and creating all sorts of

marketing " fervors " . Sometimes this may well be worth it, other times we find

out decades later that it wasn't the best way to go and people's lives have been

endangered. But that part is usually not published, the medical journals

discreetly move on and get on the new " hype " spurted

by the new funding sources.

Good science shouldn't be like this, but unfortunately we don't always know what

good science is as a recent NY Times article I'll give a link to below

illustrates. The good thing about science is that it never just stops, it is

always in flux, and there are some checks and balances that can't be evaded for

ever, new research brings new insights and yes, there's resistance at first, but

the trends cannot be stopped for too long.

Mammograms for example are praised for saving lives, and yes, I'm sure they can

and have done that in many cases, but less known is the fact that each mammogram

increases the risk of developing cancer considerably, especially in the already

high risk populations and they may not be the best way to screen for cancer

since we now have safer more sensitive screening tools available that can signal

a precancerous growth up to 8 years sooner than a mammogram. But it isn't likely

your doctor will tell you about thermography as an option yet because this too

has become a " turf " battle. Thermograms are safer and better early detection

tool because they can identify precancerous growths, whereas mammograms only

identify the cancer that is already in progress usually for at least 2 to 3

years or more so that's not too early, but the health industry is heavily

invested in mammography, millions of dollars worth, so it's not going to happen

soon unfortunately, So many of us are still

going to get those yearly mammogram recommendations and well, we each have to

decide what the costs and benefits are. The question is, do we really know our

options at this point?

And speaking of high cost, why is it that the US patients pay so much more for

their drugs than anywhere else in the world? Yes those same drugs, not cheaper

off shoots. An then there's the Viox scandal and many like it, the paid big name

doctors who did no research but just attached their names to the documents for

mega bucks.

Yes, it all happens in any field, Western /alopathic medicine included, there

are big time PROFIT seekers everywhere and we should always be cautious. But we

don't read about those as often as they occur. Although I have to hand it to the

NY Times they did publish a recent article on it and highlighted the fact that

fake research (Yes, clinical trials and everything) and phantom medical writing

are all more common practices among the Pharmaceutical Industry than many of us

are aware of or comfortable accepting.

http://www.nytimes.com/2008/04/15/business/15cnd-vioxx.html?_r=1 & em & ex=120840480\

0 & en=e63ce27a659ea15c & ei=5087%0A & oref=slogin

I'm also sure the side effects for Ritalin could make a very similar news story

to the one about the DAN protocols if anyone interviewed the doctors and the

parents of many of the children who are put on it. It even made it to the NBC

news. Yes, Ritalin, the favorite drug of childhood behavioral disorders has been

shown to stunt brain growth. That's how it works.

http://www.cbsnews.com/stories/2007/07/20/health/webmd/main3082458.shtml

Yes, well, I'm sure the clinical trials there have dispelled those myths and

it's up to each parent to decide what is worthwhile treatment for their child

and what can cause more harm than good.

And let's see, until the 50's pediatricians in the US were recommending teething

powders that contained mercury to infants and were the cause of Pink Disease, a

severely debilitating and often fatal mercury poisoning disorder.

http://books.google.com/books?id=BACSR7TXWhoC & pg=PA42 & lpg=PA42 & dq=mercury+teethi\

ng+powder & source=web & ots=A7iT5L9T-G & sig=TmmeqawZvIrbhE7SsgRkcwnM-3s & hl=en & sa=X & o\

i=book_result & resnum=5 & ct=result

The mercury worked really well too because it numbed the gums by destroying the

nerve and well, no more teething, and not all children got the Pink Disease

either, only the more vulnerable, which is why it took them decades to figure it

out.

But my favorite story of all time is Horace Miner's " Body Rituals Among the

Nacirema " It's really great to provide an alternative perspective on cultural

and medical practices, and if you take the time to read it you'll see that

anyone can write an investigative reporting piece like this about any culture,

any practices and make them sound cruel, and bizzare and even completly absurd

and make us wonder " what are those people thinking? " .

The Nacirema 's really worth a read and it may help put the UK autism piece in

perspective. And if you don't get it by the end, type it into google and get

the cliff notes

http://spot.pcc.edu/~rwolf/miner.html

Anyway, just trying to balance things out. Yes, there are " quacks " and

unethical health care practitioners out there of all denominations. The kind

that maybe do more C sections than warranted, more heart surgery procedures than

warranted, prescribe more antidepressants than warranted, more cosmetic

surgery/drug procedures than the Hypocrites Oath would allow, and many people

out there die of prescription medication side effects, especially the more

vulnerable. Here's an interesting perspective on the US medical system

considered the leading cause of death and injury, yet even after reading these

frightening statistics we don't ever consider not going to the doctor any more

do we? We all know there are some inherent risks and we've learned to trust

somehow

http://www.newmediaexplorer.org/sepp/2003/10/29/medical_system_is_leading_cause_\

of_death_and_injury_in_us.htm

So thats' how the world has always been, there's nothing new about this and

parents especially must always exercise caution and common sense ultimately in

choosing the appropriate treatments for their children.

And may we all find the strength, inspiration and resources to do the best we

can for our children!

Elena

kiddietalk <kiddietalk@...> wrote: " Why are they so expensive? What do

you get for your $650? "

To find out -a reporter went undercover to various DANs. Soooooo....

One reason below from the June 4th 2008 article 'The great autism rip-

off ... How a huge industry feeds on parents desperate to cure their

children' which could probably also be titled " What happens when

Dateline meets " Dan " in the UK?

The great autism rip-off ... How a huge industry feeds on parents

desperate to cure their children

By Barney Calman

Last updated at 4:40 PM on 04th June 2008

There is little hope given to parents of children with autism.

Mainstream medicine offers no explanation for the cause of this life-

long learning disability, thought to affect one in 100, and there are

no effective treatments.

Perhaps the most cruel characteristic of the condition, which impairs

communication development and ability to relate to others, is that

children often develop normally until about two years of age, when

they suddenly 'regress', becoming mute, withdrawn, refusing to make

eye contact and prone to tantrums.

Many never take part in mainstream education and some require full-

time care, even as adults.

Desperate: Jacqui , who has five children with ASD, knows the

allure of a promised 'cure' all too well

In the absence of solutions, desperate parents are increasingly

turning to the world of alternative medicine in their search for a

cure.

In this burgeoning market, private doctors and clinics have sprung up

across the UK claiming they can treat or even 'reverse' the disorder.

Recent research published in the Journal Of Developmental And

Behavioural Paediatrics found that a third of parents of autistic

children have tried unproven 'alternative' treatments.

Worryingly, the study claims one in ten has used what the experts

class as 'a potentially harmful approach'.

Jacqui , 43, lectures around the country on Autistic Spectrum

Disorder (ASD). The Blackpool-based mother of seven, five of whom

suffer from ASD, knows all too well the powerful allure of the

promised 'cure'.

After the family - including , 24, , 22, ,

20, Luke, 19, , 18, Joe, 15, and Ben, 11 - appeared in the 2003

BBC documentary My Family And Autism - dramatised in the film

Magnificent 7, in which actress Helena Bonham played a

character based on Jacqui - they were inundated with calls from

alternative practitioners.

Jacqui with her four sons who all suffer from autism - from left,

, Luke, Ben and Joe

'You are so desperate in the early stages, you'll try anything,' says

Jacqui. 'I bought enzymes and supplements from America, which cost a

fortune. I even paid thousands for a special mattress, blankets and

pillows with magnets sewn into them that the sales people promised

would do wonders but, of course, didn't work. Autism is seen by some

people as big business.

'I meet parents who want a cure and spend money in the hope they'll

have a normal child. I try to warn them that there is no evidence any

of these things work, but they'll often go ahead.'

To investigate Jacqui's claims and to discover exactly what is being

offered to parents, I visited five practitioners of 'biomedical'

autism therapies posing as a parent of a three-year-old boy diagnosed

with ASD.

In each case my story - a 'typical' case of an autistic child,

developed with the help of medical experts - was the same: My 'son'

Archie was born on September 15, 2004, after an uncomplicated

pregnancy and birth. He had all the usual baby vaccines, including

the MMR at 14 months, and developed normally until around 18 months

old when he became withdrawn and stopped speaking, refusing to make

eye contact.

Our GP referred us to a specialist who diagnosed him with ASD. I

claimed to be seeking help from more 'forward- thinking' doctors.

During my investigation, I was recommended expensive tests, vitamin

supplements and special diets, ointments, suppositories and

injections to 'flush out toxic heavy metals', bizarre-sounding high-

pressure oxygen chambers and intravenous infusions of hormones - and

told in each case that they could bring about a complete recovery

from autism.

Yet medical experts say there is no evidence to support their claims,

and in fact many of the treatments I was offered were potentially

harmful, and even possibly fatal. The experience left me disturbed at

the lack of regulation surrounding these practices.

The cost of some treatment programmes ran into thousands. Yet some

clinics claimed to have six-month waiting lists. This week, new

legislation aimed at protecting consumers from 'rogue traders' came

into force, prohibiting businesses from making 'false claims' that a

product is able to cure illness.

Although the practitioners stopped short of saying they could 'cure'

autism, each described to me instances of young patients who had been

transformed by their treatments and were able to lead totally normal

lives and participate fully in mainstream education.

The doctors I visited are all linked to the highly controversial US-

based Defeat Autism Now! (DAN!) group - a collection of fringe

academics and doctors. DAN! practitioners often recommend chelation

therapy - injections intended to detoxify the blood of heavy metals,

the treatment that led to the death of autistic five-year-old

Abubakar Nadama, a doctor's son from Batheaston, Somerset, in 2005.

By speaking to autism experts and GPs, I was able to identify five

key players in the DAN! movement in the UK and Ireland.

My first encounter was with Dr O'Connell. His clinic is

promoted by the Autism File, a magazine that supports the DAN!

approach.

Within moments of our first telephone conversation he tells me what,

no doubt, every parent of a child with autism longs to hear: 'Your

son could recover.'

O'Connell claims education programmes for autistic children are

like 'teaching a dog tricks' and instead offers injections of 'a

harmless, naturally produced hormone' called 'secretin' which he

claims can bring about a 'reversal' of autistic symptoms. 'Two-thirds

will improve by more than 30 per cent,' he states.

'Any gains will be permanent.' So, why have I never been told about

this treatment? 'Because doctors in this country are in the dark

ages,' comes the reply.

During our appointment, Dr O'Connell - tall, balding and tanned -

says: 'Nine years ago, I gave the first injection of secretin to a

child. There was a 76 per cent improvement after just one treatment,'

he begins.

He shows me a single sheet of paper covered with columns of numbers

written in biro. 'Each number represents a child I've treated.

Parents fill out a form measuring their child's behaviour before and

after treatment.

'After a single treatment one child, who had never talked, went into

his parents' bedroom and started asking questions.' To be absolutely

sure, I ask him again if this treatment can cause children with

autism to recover completely.

'Yes,' he replies. 'But we don't know why and a few children don't

improve.' It sounds incredible but I'm worried, I say, about my child

having injections of a hormone that isn't offered by mainstream

medics.

'It's totally safe. I've treated more children with autism than any

other doctor in Britain,' he replies. 'The only limiting factor is

money.' Treatment is expensive. The telephone consultation cost £240,

with the second at the office a further £200.

He recommends a battery of blood, urine and stool tests available

only from private clinics, at a cost of £1,546. Subsequent

consultations cost £150, and each monthly secretin injection is £450.

There is also mention of infusions of 'immune globulin' to bolster

the immune system at £550.

'The more injections a child has, the better the result,' he

says. 'Autism can be a life sentence if you do nothing about it. And

the sooner you start treatment, the more chance it will work.'

At no point during our conversations does he ask to see any medical

records. A more sympathetic character is Dr Asha Rekha Chagarlamudi,

a locum GP who runs 'The Autism Clinic' one day a week from her home,

a semi-detached house on a private estate in Bromley, South-East

London. She's a parent of a child with autism, so it would be hard to

believe her motivations are anything but genuine.

Yet she recommends Archie should have intravenous chelation therapy

and 40 sessions of Hyperbaric oxygen therapy (HBOT), which would

involve my 'son' sitting in a decompression chamber similar to those

used by divers suffering the bends.

She takes a medical history and says: 'Archie's symptoms are caused

by inflammation of the brain. Chelation therapy will help eliminate

the poisons from the blood which cause this - and HBOT will reduce

the swelling.

'Chelation is most effective given by intravenous infusion, which you

can only get in America because doctors here won't do it.' She does

not mention the recent death caused by this treatment.

Harley Street-based Dr Damien Downing, who claims to be a 'leading

figure in the field of nutritional health', is also keen on

chelation. During our consultation I'm asked to fill in a

questionnaire to assess the severity of Archie's condition.

Toxins are everywhere, rubbish dumps, incinerators, mobile phone

masts, microwaves, vaccines – this caused your son's autism,' says

Downing, who charges £250 per consultation. `Chelation in the form of

an that is rubbed on to the skin will him of the toxins, and many

children are completely normal after. You must be committed to at a

year of treatment, if not more, before you see results.'

The treatment is a cause for debate even among committed DAN!

practitioners. In Dublin I meet Dr , a specialist in

chelation therapy for adults, who tells me tries to dissuade parents

from giving their autistic children intravenous infusions `not

because it's dangerous, but because it isn't effective in clearing

mercury from the blood'. Consequently, Archie was not suitable for

treatment.

He also warns that some `DAN! doctors' are less than reputable. `All

need to do is attend one conference in the US and you can say you're

DAN! doctor – and many of them aren't medically trained.'

Dr Lorene Amet, of the Autism Treatment Trust in Edinburgh, is one

such non-medic. Her doctorate is in HIV biology although she doesn't

clarify this during the £120 consultation.

Amet takes a medical history, asks about behaviour and diet, and

recommends a series of blood and urine tests that she says are not

available on the NHS because `doctors don't know about them'.

She continues: `The tests give us a complete picture of your child's

health and what has caused his autism. From the results we will

design a diet and supplements plan. He could recover completely but

early intervention is the key – you must act now or you'll regret it.'

I've been offered a bewildering number of treatments, but could any

of them be right? Could any really work? At the end of the

investigation I speak to Mills, a director of Research

Autism, a coalition of parents, those with autism, academics and

medical experts, set up by the National Autistic Society (NAS) and

the Institute of Child Health to study new treatments for autism.

`Your experiences are not uncommon,' he says. `There is no evidence

that any of these treatments work. There is evidence that some do not

work, and even could do harm.'

Mills, who has worked in the field of autism research for the past 30

years, describes the helplessness and despair parents feel when

trying one unsuccessful treatment after another.

`Parents often tell us they weren't made aware of possible negative

effects and many spend thousands, running up bills on credit cards,

on treatments that don't work.

`Many of the practitioners who sell these treatments are no better

than snake-oil salesmen. This kind of hard-sell approach is

completely immoral. Lack of regulation means anyone can set

themselves up and claim to be able to successfully treat autism,

without any proof that it's actually possible,' he says.

Still, I can't help but think that if Archie were real, I'd be

willing to try anything, and pay anything for a chance to help him

live a normal life.

Dr Gillian Baird, consultant paedi-atrician at Guy's Hospital,

London, and a leading expert on autism, explains that although autism

is incurable, some children can improve.

`We know that there is something biologically different about the

brain function of children and adults with autism, but we don't know

what that is or what causes it,' she says.

`There are accounts of treatments that have helped but this is not

the same as evidence. The reason some parents believe they see

improvements is because autism A is a condition that changes over

time. And behav-iour in all of us can be altered by environment and

what we put into our bodies.'

She warns parents that invasive treatments, such as injections, carry

a risk of infection.

Mills advises parents to ask to see research to back up any claims

and ask for copies of any published studies to discuss with a GP or

consultant.

`These practitioners often claim mainstream doctors aren't interested

in helping children get better. This is not only completely untrue

but hurtful. Doctors who devote their lives to working with them

every day would like there to be a successful treatment for autism as

much as anyone – they know just how desperate parents are for an

answer.'

Jacqui urges parents of children with autism to think again

before subjecting them to unproven treatments. `Perhaps we should

begin to look at autism as another way of being, instead of hoping to

find a cure,' she says.

`These doctors promise they can make autistic children " normal " . But

who is to say what normal is?'

For information about autism treatments, visit www.researchautism.net.

Here Research Autism Director Mills gives his verdict on the

treatments recommended by the doctors. The Mail on Sunday then also

offered the doctors a chance to comment on the findings of our

investigation.

THE CONSULTATIONS

Here Research Autism Director Mills gives his verdict on the

treatments recommended by the doctors. The Mail on Sunday then also

offered the doctors a chance to comment on the findings of our

investigation.

Dr O'Connell

Who: Dr O'Connell, 41 Elystan Place, London

Consultation fee: £350

Recommends: Blood and urine tests, secretin injections once a month,

immune globulin infusions and dietary supplements

Cost: £1,996

Mills' verdict: Secretin is a hormone that helps digestion.

Some think its injection will ensure food is properly digested and

stop harmful chemicals from food travelling to the brain.

There is overwhelming evidence from double blind clinical trials to

show that secretin works no better than a placebo in treating autism.

But some studies report there are negative effects. The use of

secretin is not recommended for people with autism.

Dr O'Connell says now: I would agree to treatment only after

examining a child. With any drug there are studies that show it

doesn't work, as well as those that do.

The studies that found secretin didn't work were badly designed. I've

not published my findings in peer reviewed journals because I am

unwilling to submit children to double blind trials.

Dr Lorene Amet

Who: Dr Lorene Amet at the Autism Treatment Trust, 29A Stafford

Street, Edinburgh

Consultation fee: £120

Recommends: Urine tests and tests for DNA oxidation; hair test for

heavy metals; a four-hour appointment to look at test results; wheat

and dairy diet plan; and supplements

Cost: Tests £480, follow-up appointment £400

Mills' verdict: Some children with autism have a higher

incidence of gut problems, and there is anecdotal evidence that diet,

especially one that is wheat and dairy-free, is helpful in treating

the physical and behavioural symptoms of autism, but these are not

regarded as curative treatments. Because autism is so broad and is

not a single condition, there are no specific laboratory tests to

determine the causes.

Dr Lorene Amet says now: We have had positive reports from eight out

of ten parents. Some children do not progress. Mainstream medicine

has failed many of the children we see. We are here to help parents

safely explore alternative treatments. More research is needed and we

are applying for funding.

Dr Asha Rekha Chagarlamudi

Who: Dr Asha Rekha Chagarlamudi, The Autism Clinic, Bromley, South-

East London

Consultation fee: £100 (she later agrees to waive this if there

are 'problems with money')

Recommends: Blood, urine and stool analysis, hyperbaric oxygen

therapy, chelation therapy

Cost: Tests £775, 40 HBOT sessions £400

Mills' verdict: Hyperbaric therapy is the administering of

oxygen at a higher

than atmospheric pressure to a patient in a pressurised chamber to

increase oxygen absorption in bodily tissue. It is usually used for

decompression sickness or carbon monoxide poisoning. Side-effects

include trauma to the ears due to pressure and oxygen toxicity, which

causes nausea, vomiting, convulsions, inflammation and fluid

accumulation in the lungs. There is little evidence it is effective

for autistic children. Use of oxygen has risks and we would advise

caution.

Dr Chagarlamudi says now: HBOT is being given to children with autism

in Dundee on the NHS. There have been no double blind trials but

smaller studies are needed before that happens. Chelation has risks

but is safe when carried out correctly. I make a third less per day

from my autism clinic than I do in general practice. I believe these

treatments do cause improvement in children. Someone has to start

trying to so something or we will never find a cure.

Dr Damien Downing

Who: Dr Damien Downing, 144 Harley Street

Consultation fee: £250

Recommends: Urine toxic metal test and blood deficiency tests.

Dependent on results, chelation therapy - administered topically as

oil rubbed into the skin

Costs: Tests £200, follow-up appointment £150, chelation £97 per

seven applications

Mills' verdict: Chelation can be dangerous. Chemical

compounds injected into the bloodstream, taken orally, topically or

by suppositing, bind to metals that are present in toxic

concentrations which are excreted from the body. There is no

scientific evidence it is effective in the treatment of autism. Side-

effects include nausea, vomiting, headaches and kidney damage.

Dr Downing says now: Heavy metal damage as a cause of autism is

coming to be widely accepted. Many doctors agree that the removal of

metals is the most useful treatment available. There is no evidence

that chelation could be life threatening except when given by

injection.

AUTISM EXPLAINED

The term 'autism' refers not to a single illness but to part of a

wide range of conditions - so-called Autistic Spectrum Disorder

(ASD) - with many features that may or may not be present in a

given child.

Classic autism, which affects one in 100 children in the UK,

according to latest figures, typically involves associated learning

difficulties and problems with language, as well as a tendency for

obsessive and repetitive behaviour, with varying degrees of severity.

Part of the Daily Mail, The Mail on Sunday, Evening Standard & Metro

Media Group

Find this story at

http://www.dailymail.co.uk/health/article-1023351/The-great-autism-rip---How-hug\

e-industry-feeds-parents-desperate-cure-children.html

Many others talking about this

" I had to pinch myself to check I was actually awake and not dreaming when this

landed in my inbox this morning.

This is a truly excellent piece of journalism on autism and the growing CAM

(Complimentary and Alternative Medicine) industry (Small Pharma?) that surrounds

it. And its in the Daily Mail.

I can imagine many people choking on their cornflakes this morning. A little JAB

of reality,

The reporter went to see a few DAN! registered UK docs. The experience wasn’t

pretty. One made outlandish claims for Secretin but didn’t ask for any medical

records. One pushed chelation and never mentioned Tariq Nadama. Another said the

reporter would have to commit to a year of rubbing in a skin cream chelator of

dubiouis eficacy. Dr Lorene Amet failed to disclose that she wasn’t actually a

doctor of medicine (its not uncommon for DAN! ‘doctors’ to not actually be

doctors).

=== message truncated ===

July 2, 2008

Like anything, there are good and bad DAN docs. There is no one set

treatment plan for autism. You should see the run around a friend of

mine is getting while trying to treat her CANCER. Now I understand

why it's so hard to get appropriate treatment for autism and related

illnesses. It is up to us parents to help treat our kids with any of

the A's - apraxia, autism, etc. ASD is HUGE business - so buyer

beware (just as when you pick another doc, buy a car, shop for food).

But don't forget to visit Age of Autism's " Recovery Stories " for a

bit of a lift to see where we've come in the past few years. Kids are

getting help a lot earlier...

Best of luck to all of us,

>

> " Why are they so expensive? What do you get for your $650? "

>

> To find out -a reporter went undercover to various DANs.

Soooooo....

>

> One reason below from the June 4th 2008 article 'The great autism

rip-

> off ... How a huge industry feeds on parents desperate to cure their

> children' which could probably also be titled " What happens when

> Dateline meets " Dan " in the UK?

>

> The great autism rip-off ... How a huge industry feeds on parents

> desperate to cure their children

>

> By Barney Calman

> Last updated at 4:40 PM on 04th June 2008

>

> There is little hope given to parents of children with autism.

>

> Mainstream medicine offers no explanation for the cause of this

life-

> long learning disability, thought to affect one in 100, and there

are

> no effective treatments.

>

> Perhaps the most cruel characteristic of the condition, which

impairs

> communication development and ability to relate to others, is that

> children often develop normally until about two years of age, when

> they suddenly 'regress', becoming mute, withdrawn, refusing to make

> eye contact and prone to tantrums.

>

> Many never take part in mainstream education and some require full-

> time care, even as adults.

>

> Desperate: Jacqui , who has five children with ASD, knows the

> allure of a promised 'cure' all too well

>

> In the absence of solutions, desperate parents are increasingly

> turning to the world of alternative medicine in their search for a

> cure.

>

> In this burgeoning market, private doctors and clinics have sprung

up

> across the UK claiming they can treat or even 'reverse' the

disorder.

>

> Recent research published in the Journal Of Developmental And

> Behavioural Paediatrics found that a third of parents of autistic

> children have tried unproven 'alternative' treatments.

>

> Worryingly, the study claims one in ten has used what the experts

> class as 'a potentially harmful approach'.

>

> Jacqui , 43, lectures around the country on Autistic Spectrum

> Disorder (ASD). The Blackpool-based mother of seven, five of whom

> suffer from ASD, knows all too well the powerful allure of the

> promised 'cure'.

>

> After the family - including , 24, , 22, ,

> 20, Luke, 19, , 18, Joe, 15, and Ben, 11 - appeared in the 2003

> BBC documentary My Family And Autism - dramatised in the film

> Magnificent 7, in which actress Helena Bonham played a

> character based on Jacqui - they were inundated with calls from

> alternative practitioners.

>

> Jacqui with her four sons who all suffer from autism - from left,

> , Luke, Ben and Joe

>

> 'You are so desperate in the early stages, you'll try anything,'

says

> Jacqui. 'I bought enzymes and supplements from America, which cost a

> fortune. I even paid thousands for a special mattress, blankets and

> pillows with magnets sewn into them that the sales people promised

> would do wonders but, of course, didn't work. Autism is seen by some

> people as big business.

>

> 'I meet parents who want a cure and spend money in the hope they'll

> have a normal child. I try to warn them that there is no evidence

any

> of these things work, but they'll often go ahead.'

>

> To investigate Jacqui's claims and to discover exactly what is being

> offered to parents, I visited five practitioners of 'biomedical'

> autism therapies posing as a parent of a three-year-old boy

diagnosed

> with ASD.

>

> In each case my story - a 'typical' case of an autistic child,

> developed with the help of medical experts - was the same: My 'son'

> Archie was born on September 15, 2004, after an uncomplicated

> pregnancy and birth. He had all the usual baby vaccines, including

> the MMR at 14 months, and developed normally until around 18 months

> old when he became withdrawn and stopped speaking, refusing to make

> eye contact.

>

> Our GP referred us to a specialist who diagnosed him with ASD. I

> claimed to be seeking help from more 'forward- thinking' doctors.

> During my investigation, I was recommended expensive tests, vitamin

> supplements and special diets, ointments, suppositories and

> injections to 'flush out toxic heavy metals', bizarre-sounding high-

> pressure oxygen chambers and intravenous infusions of hormones - and

> told in each case that they could bring about a complete recovery

> from autism.

>

> Yet medical experts say there is no evidence to support their

claims,

> and in fact many of the treatments I was offered were potentially

> harmful, and even possibly fatal. The experience left me disturbed

at

> the lack of regulation surrounding these practices.

>

> The cost of some treatment programmes ran into thousands. Yet some

> clinics claimed to have six-month waiting lists. This week, new

> legislation aimed at protecting consumers from 'rogue traders' came

> into force, prohibiting businesses from making 'false claims' that a

> product is able to cure illness.

>

> Although the practitioners stopped short of saying they could 'cure'

> autism, each described to me instances of young patients who had

been

> transformed by their treatments and were able to lead totally normal

> lives and participate fully in mainstream education.

>

> The doctors I visited are all linked to the highly controversial US-

> based Defeat Autism Now! (DAN!) group - a collection of fringe

> academics and doctors. DAN! practitioners often recommend chelation

> therapy - injections intended to detoxify the blood of heavy metals,

> the treatment that led to the death of autistic five-year-old

> Abubakar Nadama, a doctor's son from Batheaston, Somerset, in 2005.

> By speaking to autism experts and GPs, I was able to identify five

> key players in the DAN! movement in the UK and Ireland.

>

> My first encounter was with Dr O'Connell. His clinic is

> promoted by the Autism File, a magazine that supports the DAN!

> approach.

>

> Within moments of our first telephone conversation he tells me what,

> no doubt, every parent of a child with autism longs to hear: 'Your

> son could recover.'

>

> O'Connell claims education programmes for autistic children are

> like 'teaching a dog tricks' and instead offers injections of 'a

> harmless, naturally produced hormone' called 'secretin' which he

> claims can bring about a 'reversal' of autistic symptoms. 'Two-

thirds

> will improve by more than 30 per cent,' he states.

>

> 'Any gains will be permanent.' So, why have I never been told about

> this treatment? 'Because doctors in this country are in the dark

> ages,' comes the reply.

>

> During our appointment, Dr O'Connell - tall, balding and tanned -

> says: 'Nine years ago, I gave the first injection of secretin to a

> child. There was a 76 per cent improvement after just one

treatment,'

> he begins.

>

> He shows me a single sheet of paper covered with columns of numbers

> written in biro. 'Each number represents a child I've treated.

> Parents fill out a form measuring their child's behaviour before and

> after treatment.

>

> 'After a single treatment one child, who had never talked, went into

> his parents' bedroom and started asking questions.' To be absolutely

> sure, I ask him again if this treatment can cause children with

> autism to recover completely.

>

> 'Yes,' he replies. 'But we don't know why and a few children don't

> improve.' It sounds incredible but I'm worried, I say, about my

child

> having injections of a hormone that isn't offered by mainstream

> medics.

>

> 'It's totally safe. I've treated more children with autism than any

> other doctor in Britain,' he replies. 'The only limiting factor is

> money.' Treatment is expensive. The telephone consultation cost

£240,

> with the second at the office a further £200.

>

> He recommends a battery of blood, urine and stool tests available

> only from private clinics, at a cost of £1,546. Subsequent

> consultations cost £150, and each monthly secretin injection is

£450.

> There is also mention of infusions of 'immune globulin' to bolster

> the immune system at £550.

>

> 'The more injections a child has, the better the result,' he

> says. 'Autism can be a life sentence if you do nothing about it. And

> the sooner you start treatment, the more chance it will work.'

>

> At no point during our conversations does he ask to see any medical

> records. A more sympathetic character is Dr Asha Rekha Chagarlamudi,

> a locum GP who runs 'The Autism Clinic' one day a week from her

home,

> a semi-detached house on a private estate in Bromley, South-East

> London. She's a parent of a child with autism, so it would be hard

to

> believe her motivations are anything but genuine.

>

> Yet she recommends Archie should have intravenous chelation therapy

> and 40 sessions of Hyperbaric oxygen therapy (HBOT), which would

> involve my 'son' sitting in a decompression chamber similar to those

> used by divers suffering the bends.

>

> She takes a medical history and says: 'Archie's symptoms are caused

> by inflammation of the brain. Chelation therapy will help eliminate

> the poisons from the blood which cause this - and HBOT will reduce

> the swelling.

>

> 'Chelation is most effective given by intravenous infusion, which

you

> can only get in America because doctors here won't do it.' She does

> not mention the recent death caused by this treatment.

>

> Harley Street-based Dr Damien Downing, who claims to be a 'leading

> figure in the field of nutritional health', is also keen on

> chelation. During our consultation I'm asked to fill in a

> questionnaire to assess the severity of Archie's condition.

>

> Toxins are everywhere, rubbish dumps, incinerators, mobile phone

> masts, microwaves, vaccines – this caused your son's autism,' says

> Downing, who charges £250 per consultation. `Chelation in the form

of

> an that is rubbed on to the skin will him of the toxins, and many

> children are completely normal after. You must be committed to at a

> year of treatment, if not more, before you see results.'

>

> The treatment is a cause for debate even among committed DAN!

> practitioners. In Dublin I meet Dr , a specialist in

> chelation therapy for adults, who tells me tries to dissuade parents

> from giving their autistic children intravenous infusions `not

> because it's dangerous, but because it isn't effective in clearing

> mercury from the blood'. Consequently, Archie was not suitable for

> treatment.

>

> He also warns that some `DAN! doctors' are less than reputable. `All

> need to do is attend one conference in the US and you can say you're

> DAN! doctor – and many of them aren't medically trained.'

>

> Dr Lorene Amet, of the Autism Treatment Trust in Edinburgh, is one

> such non-medic. Her doctorate is in HIV biology although she doesn't

> clarify this during the £120 consultation.

>

> Amet takes a medical history, asks about behaviour and diet, and

> recommends a series of blood and urine tests that she says are not

> available on the NHS because `doctors don't know about them'.

>

> She continues: `The tests give us a complete picture of your child's

> health and what has caused his autism. From the results we will

> design a diet and supplements plan. He could recover completely but

> early intervention is the key – you must act now or you'll regret

it.'

>

> I've been offered a bewildering number of treatments, but could any

> of them be right? Could any really work? At the end of the

> investigation I speak to Mills, a director of Research

> Autism, a coalition of parents, those with autism, academics and

> medical experts, set up by the National Autistic Society (NAS) and

> the Institute of Child Health to study new treatments for autism.

>

> `Your experiences are not uncommon,' he says. `There is no evidence

> that any of these treatments work. There is evidence that some do

not

> work, and even could do harm.'

>

> Mills, who has worked in the field of autism research for the past

30

> years, describes the helplessness and despair parents feel when

> trying one unsuccessful treatment after another.

>

> `Parents often tell us they weren't made aware of possible negative

> effects and many spend thousands, running up bills on credit cards,

> on treatments that don't work.

>

> `Many of the practitioners who sell these treatments are no better

> than snake-oil salesmen. This kind of hard-sell approach is

> completely immoral. Lack of regulation means anyone can set

> themselves up and claim to be able to successfully treat autism,

> without any proof that it's actually possible,' he says.

>

> Still, I can't help but think that if Archie were real, I'd be

> willing to try anything, and pay anything for a chance to help him

> live a normal life.

>

> Dr Gillian Baird, consultant paedi-atrician at Guy's Hospital,

> London, and a leading expert on autism, explains that although

autism

> is incurable, some children can improve.

>

> `We know that there is something biologically different about the

> brain function of children and adults with autism, but we don't know

> what that is or what causes it,' she says.

>

> `There are accounts of treatments that have helped but this is not

> the same as evidence. The reason some parents believe they see

> improvements is because autism A is a condition that changes over

> time. And behav-iour in all of us can be altered by environment and

> what we put into our bodies.'

>

> She warns parents that invasive treatments, such as injections,

carry

> a risk of infection.

>

> Mills advises parents to ask to see research to back up any claims

> and ask for copies of any published studies to discuss with a GP or

> consultant.

>

> `These practitioners often claim mainstream doctors aren't

interested

> in helping children get better. This is not only completely untrue

> but hurtful. Doctors who devote their lives to working with them

> every day would like there to be a successful treatment for autism

as

> much as anyone – they know just how desperate parents are for an

> answer.'

>

> Jacqui urges parents of children with autism to think again

> before subjecting them to unproven treatments. `Perhaps we should

> begin to look at autism as another way of being, instead of hoping

to

> find a cure,' she says.

>

> `These doctors promise they can make autistic children " normal " . But

> who is to say what normal is?'

>

> For information about autism treatments, visit

www.researchautism.net.

>

> Here Research Autism Director Mills gives his verdict on the

> treatments recommended by the doctors. The Mail on Sunday then also

> offered the doctors a chance to comment on the findings of our

> investigation.

>

> THE CONSULTATIONS

> Here Research Autism Director Mills gives his verdict on the

> treatments recommended by the doctors. The Mail on Sunday then also

> offered the doctors a chance to comment on the findings of our

> investigation.

>

> Dr O'Connell

>

> Who: Dr O'Connell, 41 Elystan Place, London

>

> Consultation fee: £350

>

> Recommends: Blood and urine tests, secretin injections once a month,

> immune globulin infusions and dietary supplements

>

> Cost: £1,996

>

> Mills' verdict: Secretin is a hormone that helps digestion.

> Some think its injection will ensure food is properly digested and

> stop harmful chemicals from food travelling to the brain.

>

> There is overwhelming evidence from double blind clinical trials to

> show that secretin works no better than a placebo in treating

autism.

> But some studies report there are negative effects. The use of

> secretin is not recommended for people with autism.

>

> Dr O'Connell says now: I would agree to treatment only after

> examining a child. With any drug there are studies that show it

> doesn't work, as well as those that do.

>

> The studies that found secretin didn't work were badly designed.

I've

> not published my findings in peer reviewed journals because I am

> unwilling to submit children to double blind trials.

>

> Dr Lorene Amet

>

> Who: Dr Lorene Amet at the Autism Treatment Trust, 29A Stafford

> Street, Edinburgh

>

> Consultation fee: £120

>

> Recommends: Urine tests and tests for DNA oxidation; hair test for

> heavy metals; a four-hour appointment to look at test results; wheat

> and dairy diet plan; and supplements

>

> Cost: Tests £480, follow-up appointment £400

>

> Mills' verdict: Some children with autism have a higher

> incidence of gut problems, and there is anecdotal evidence that

diet,

> especially one that is wheat and dairy-free, is helpful in treating

> the physical and behavioural symptoms of autism, but these are not

> regarded as curative treatments. Because autism is so broad and is

> not a single condition, there are no specific laboratory tests to

> determine the causes.

>

> Dr Lorene Amet says now: We have had positive reports from eight out

> of ten parents. Some children do not progress. Mainstream medicine

> has failed many of the children we see. We are here to help parents

> safely explore alternative treatments. More research is needed and

we

> are applying for funding.

>

> Dr Asha Rekha Chagarlamudi

>

> Who: Dr Asha Rekha Chagarlamudi, The Autism Clinic, Bromley, South-

> East London

> Consultation fee: £100 (she later agrees to waive this if there

> are 'problems with money')

>

> Recommends: Blood, urine and stool analysis, hyperbaric oxygen

> therapy, chelation therapy

>

> Cost: Tests £775, 40 HBOT sessions £400

>

> Mills' verdict: Hyperbaric therapy is the administering of

> oxygen at a higher

> than atmospheric pressure to a patient in a pressurised chamber to

> increase oxygen absorption in bodily tissue. It is usually used for

> decompression sickness or carbon monoxide poisoning. Side-effects

> include trauma to the ears due to pressure and oxygen toxicity,

which

> causes nausea, vomiting, convulsions, inflammation and fluid

> accumulation in the lungs. There is little evidence it is effective

> for autistic children. Use of oxygen has risks and we would advise

> caution.

>

> Dr Chagarlamudi says now: HBOT is being given to children with

autism

> in Dundee on the NHS. There have been no double blind trials but

> smaller studies are needed before that happens. Chelation has risks

> but is safe when carried out correctly. I make a third less per day

> from my autism clinic than I do in general practice. I believe these

> treatments do cause improvement in children. Someone has to start

> trying to so something or we will never find a cure.

>

> Dr Damien Downing

>

> Who: Dr Damien Downing, 144 Harley Street

>

> Consultation fee: £250

>

> Recommends: Urine toxic metal test and blood deficiency tests.

> Dependent on results, chelation therapy - administered topically as

> oil rubbed into the skin

>

> Costs: Tests £200, follow-up appointment £150, chelation £97 per

> seven applications

>

> Mills' verdict: Chelation can be dangerous. Chemical

> compounds injected into the bloodstream, taken orally, topically or

> by suppositing, bind to metals that are present in toxic

> concentrations which are excreted from the body. There is no

> scientific evidence it is effective in the treatment of autism.

Side-

> effects include nausea, vomiting, headaches and kidney damage.

>

> Dr Downing says now: Heavy metal damage as a cause of autism is

> coming to be widely accepted. Many doctors agree that the removal of

> metals is the most useful treatment available. There is no evidence

> that chelation could be life threatening except when given by

> injection.

>

> AUTISM EXPLAINED

> The term 'autism' refers not to a single illness but to part of a

> wide range of conditions - so-called Autistic Spectrum Disorder

> (ASD) - with many features that may or may not be present in a

> given child.

>

> Classic autism, which affects one in 100 children in the UK,

> according to latest figures, typically involves associated learning

> difficulties and problems with language, as well as a tendency for

> obsessive and repetitive behaviour, with varying degrees of

severity.

> Part of the Daily Mail, The Mail on Sunday, Evening Standard & Metro

> Media Group

>

> Find this story at

> http://www.dailymail.co.uk/health/article-1023351/The-great-autism-

rip---How-huge-industry-feeds-parents-desperate-cure-children.html

>

> Many others talking about this

>

> " I had to pinch myself to check I was actually awake and not

dreaming when this landed in my inbox this morning.

>

> This is a truly excellent piece of journalism on autism and the

growing CAM (Complimentary and Alternative Medicine) industry (Small

Pharma?) that surrounds it. And its in the Daily Mail.

>

> I can imagine many people choking on their cornflakes this morning.

A little JAB of reality,

>

> The reporter went to see a few DAN! registered UK docs. The

experience wasn't pretty. One made outlandish claims for Secretin but

didn't ask for any medical records. One pushed chelation and never

mentioned Tariq Nadama. Another said the reporter would have to

commit to a year of rubbing in a skin cream chelator of dubiouis

eficacy. Dr Lorene Amet failed to disclose that she wasn't actually a

doctor of medicine (its not uncommon for DAN! `doctors' to not

actually be doctors).

>

> Its a highly revealing piece of a grubby, grasping little world

that preys on the parents of autistic people. Thanks are due to the

Mail for reporting on this so accurately and thoroughly. "

> http://leftbrainrightbrain.co.uk/?p=847

>

> =====

>

July 2, 2008

I know for sure there are some DAN medical doctors who have helped

children and are good people. But. it's very possible many of you may

not need to go to more complex and expensive biomedical methods. I

am not against it -just why do it if you don't have to?

Yes there are good and bad in all professions. But most professions

have standards to protect the public. In regards to children it

appears there is more protection in place in regards to movies than

some of the crazy and possibly dangerous untested treatments some

preschool children are put through. If an SLP is bad they can be

reported. If a teacher is bad they can be reported. If a medical

doctor is bad they can be reported. If a social worker is a

DAN " doctor " -who do you report them to if they are bad?

To me the point of the article is that due to the fact that one can

just attend a DAN conference and call themselves a DAN doctor it's

creating a problem as many desperate parents are not aware that not

all that call themselves doctors are medical doctors. And on the

other side my son's one SLP here Dr. Renai Jonas is listed as a DAN

doctor on some site and she had not a clue. I asked her if she ever

attended a DAN conference and she said it's possible as she attends

conferences all the time -but didn't even know what DAN was! Even if

it is a medical doctor it doesn't mean that person has any background

in pediatrics -or neurology. In my neighborhood I have one neighbor

that is a cardiologist -one that is a podiatrist and one that is an

orthodontist. If any one of them had a child with autism they would

be as clueless as to what to do as anyone else and if any one of them

attended a DAN conference they would be in no better shape than any

of us -probably less so since some of us have had a go at this with

our own children for months or years now. Just because you are a

medical doctor doesn't make you have endless knowledge to every

condition out there. And just because you attend one conference

doesn't give you endless knowledge of how to treat preschool

children. As parents we need to be aware of pros and cons before we

proceed with any type of treatment for our children. Weigh the pros

and cons and in order to do that you have to know the cons -which

this article did a good job of investigative reporting to pull out.

=====

July 2, 2008

Elena, where did you get your facts that each mammogram increases the risk

of developing breast cancer?

-----Original Message-----

Mammograms for example are praised for saving lives, and yes, I'm sure they

can and have done that in many cases, but less known is the fact that each

mammogram increases the risk of developing cancer considerably, especially

in the already high risk populations and they may not be the best way to

screen for cancer since we now have safer more sensitive screening tools

available that can signal a precancerous growth up to 8 years sooner than a

mammogram. But it isn't likely your doctor will tell you about thermography

as an option yet because this too has become a " turf " battle. Thermograms

are safer and better early detection tool because they can identify

precancerous growths, whereas mammograms only identify the cancer that is

already in progress usually for at least 2 to 3 years or more so that's not

too early, but the health industry is heavily invested in mammography,

millions of dollars worth, so it's not going to happen soon unfortunately,

So many of us are still

going to get those yearly mammogram recommendations and well, we each have

to decide what the costs and benefits are. The question is, do we really

know our options at this point?

July 2, 2008

Medical Doctor's don't know everything that is for sure, but for the most

part they do have more knowledge than the average person when it comes to

medical issues. They know more than the average parent. It depends completely

on

the training of the physician and what they have studied. Also, it depends

on the parent and how much they study and learn. To group all DAN Dr's in

one category really isn't fair. Physicians do good things and they do help

people, I have more confidence going to a DAN Dr. that is a physician because

he

does have more knowledge than just a person attending a conference. I don't

believe that a physician that had a child with autism would be just as

clueless as to what to do to help their child. Again, it depends on the

particular physician and what they study and learn in relation to the autism.

Everyone

should check out that a DAN Dr, is just that a MD not just a person

attending a conference. Doctor's go to school to learn things and they do know

more

for a reason. No one has all the answers and no one should claim to cure

autism, at this point that is not possible, children can get better but if

there

were a cure just by going to a DAN Dr, or anyone else for that matter, we as

parents would all be in line to help our kids. Jen

**************Gas prices getting you down? Search AOL Autos for

fuel-efficient used cars.

(http://autos.aol.com/used?ncid=aolaut00050000000007)

July 2, 2008

- I hope you are not implying that ALL DANs are rip offs by

posting this article. I can't believe you would post this.

My son has improved incredibly since we started seeing one in

January. Please join other (MB12/Valtrex & Chelating

kids just to mention a few) and talk to HUNDREDS of parents who have

recovered their kids using the DAN! protocol.

Everyone needs to be well read and educated before going to a DAN!

doctor. As in all areas of medicine, I'm sure there are doctors

that should not be practicing.

The basis of the DAN! protocol is Spot ON! Please read Dr. Bocks

book curing the 4 A's.

Calling these treatments " BIZARRE " is unbelievable (as the woman did

in the article). You are promoting this thought by posting this

article. These treatments ARE HELPING OUR CHILDREN. My son is

proof as is your son. What would you call vitamin E and fish oil?

It's a biomedical treatment in which any DAN! doctor would

recommend. Just because you chose not to go further and seek other

interventions does not make you correct.

I think it's irresponsible of you to post this as if it's a truth

that any DAN! protocol is a quack. I'm very disappointed. I think

you need to do a little more research.

>

> " Why are they so expensive? What do you get for your $650? "

>

> To find out -a reporter went undercover to various DANs.

Soooooo....

>

> One reason below from the June 4th 2008 article 'The great autism

rip-

> off ... How a huge industry feeds on parents desperate to cure

their

> children' which could probably also be titled " What happens when

> Dateline meets " Dan " in the UK?

>

> The great autism rip-off ... How a huge industry feeds on parents

> desperate to cure their children

>

> By Barney Calman

> Last updated at 4:40 PM on 04th June 2008

>

> There is little hope given to parents of children with autism.

>

> Mainstream medicine offers no explanation for the cause of this

life-

> long learning disability, thought to affect one in 100, and there

are

> no effective treatments.

>

> Perhaps the most cruel characteristic of the condition, which

impairs

> communication development and ability to relate to others, is that

> children often develop normally until about two years of age, when

> they suddenly 'regress', becoming mute, withdrawn, refusing to make

> eye contact and prone to tantrums.

>

> Many never take part in mainstream education and some require full-

> time care, even as adults.

>

> Desperate: Jacqui , who has five children with ASD, knows

the

> allure of a promised 'cure' all too well

>

> In the absence of solutions, desperate parents are increasingly

> turning to the world of alternative medicine in their search for a

> cure.

>

> In this burgeoning market, private doctors and clinics have sprung

up

> across the UK claiming they can treat or even 'reverse' the

disorder.

>

> Recent research published in the Journal Of Developmental And

> Behavioural Paediatrics found that a third of parents of autistic

> children have tried unproven 'alternative' treatments.

>

> Worryingly, the study claims one in ten has used what the experts

> class as 'a potentially harmful approach'.

>

> Jacqui , 43, lectures around the country on Autistic

Spectrum

> Disorder (ASD). The Blackpool-based mother of seven, five of whom

> suffer from ASD, knows all too well the powerful allure of the

> promised 'cure'.

>

> After the family - including , 24, , 22,

,

> 20, Luke, 19, , 18, Joe, 15, and Ben, 11 - appeared in the 2003

> BBC documentary My Family And Autism - dramatised in the film

> Magnificent 7, in which actress Helena Bonham played a

> character based on Jacqui - they were inundated with calls from

> alternative practitioners.

>

> Jacqui with her four sons who all suffer from autism - from left,

> , Luke, Ben and Joe

>

> 'You are so desperate in the early stages, you'll try anything,'

says

> Jacqui. 'I bought enzymes and supplements from America, which cost

a

> fortune. I even paid thousands for a special mattress, blankets and

> pillows with magnets sewn into them that the sales people promised

> would do wonders but, of course, didn't work. Autism is seen by

some

> people as big business.

>

> 'I meet parents who want a cure and spend money in the hope they'll

> have a normal child. I try to warn them that there is no evidence

any

> of these things work, but they'll often go ahead.'

>

> To investigate Jacqui's claims and to discover exactly what is

being

> offered to parents, I visited five practitioners of 'biomedical'

> autism therapies posing as a parent of a three-year-old boy

diagnosed

> with ASD.

>

> In each case my story - a 'typical' case of an autistic child,

> developed with the help of medical experts - was the same: My 'son'

> Archie was born on September 15, 2004, after an uncomplicated

> pregnancy and birth. He had all the usual baby vaccines, including

> the MMR at 14 months, and developed normally until around 18 months

> old when he became withdrawn and stopped speaking, refusing to make

> eye contact.

>

> Our GP referred us to a specialist who diagnosed him with ASD. I

> claimed to be seeking help from more 'forward- thinking' doctors.

> During my investigation, I was recommended expensive tests, vitamin

> supplements and special diets, ointments, suppositories and

> injections to 'flush out toxic heavy metals', bizarre-sounding

high-

> pressure oxygen chambers and intravenous infusions of hormones -

and

> told in each case that they could bring about a complete recovery

> from autism.

>

> Yet medical experts say there is no evidence to support their

claims,

> and in fact many of the treatments I was offered were potentially

> harmful, and even possibly fatal. The experience left me disturbed

at

> the lack of regulation surrounding these practices.

>

> The cost of some treatment programmes ran into thousands. Yet some

> clinics claimed to have six-month waiting lists. This week, new

> legislation aimed at protecting consumers from 'rogue traders' came

> into force, prohibiting businesses from making 'false claims' that

a

> product is able to cure illness.

>

> Although the practitioners stopped short of saying they

could 'cure'

> autism, each described to me instances of young patients who had

been

> transformed by their treatments and were able to lead totally

normal

> lives and participate fully in mainstream education.

>

> The doctors I visited are all linked to the highly controversial

US-

> based Defeat Autism Now! (DAN!) group - a collection of fringe

> academics and doctors. DAN! practitioners often recommend chelation

> therapy - injections intended to detoxify the blood of heavy

metals,

> the treatment that led to the death of autistic five-year-old

> Abubakar Nadama, a doctor's son from Batheaston, Somerset, in 2005.

> By speaking to autism experts and GPs, I was able to identify five

> key players in the DAN! movement in the UK and Ireland.

>

> My first encounter was with Dr O'Connell. His clinic is

> promoted by the Autism File, a magazine that supports the DAN!

> approach.

>

> Within moments of our first telephone conversation he tells me

what,

> no doubt, every parent of a child with autism longs to hear: 'Your

> son could recover.'

>

> O'Connell claims education programmes for autistic children are

> like 'teaching a dog tricks' and instead offers injections of 'a

> harmless, naturally produced hormone' called 'secretin' which he

> claims can bring about a 'reversal' of autistic symptoms. 'Two-

thirds

> will improve by more than 30 per cent,' he states.

>

> 'Any gains will be permanent.' So, why have I never been told about

> this treatment? 'Because doctors in this country are in the dark

> ages,' comes the reply.

>

> During our appointment, Dr O'Connell - tall, balding and tanned -

> says: 'Nine years ago, I gave the first injection of secretin to a

> child. There was a 76 per cent improvement after just one

treatment,'

> he begins.

>

> He shows me a single sheet of paper covered with columns of numbers

> written in biro. 'Each number represents a child I've treated.

> Parents fill out a form measuring their child's behaviour before

and

> after treatment.

>

> 'After a single treatment one child, who had never talked, went

into

> his parents' bedroom and started asking questions.' To be

absolutely

> sure, I ask him again if this treatment can cause children with

> autism to recover completely.

>

> 'Yes,' he replies. 'But we don't know why and a few children don't

> improve.' It sounds incredible but I'm worried, I say, about my

child

> having injections of a hormone that isn't offered by mainstream

> medics.

>

> 'It's totally safe. I've treated more children with autism than any

> other doctor in Britain,' he replies. 'The only limiting factor is

> money.' Treatment is expensive. The telephone consultation cost

£240,

> with the second at the office a further £200.

>

> He recommends a battery of blood, urine and stool tests available

> only from private clinics, at a cost of £1,546. Subsequent

> consultations cost £150, and each monthly secretin injection is

£450.

> There is also mention of infusions of 'immune globulin' to bolster

> the immune system at £550.

>

> 'The more injections a child has, the better the result,' he

> says. 'Autism can be a life sentence if you do nothing about it.

And

> the sooner you start treatment, the more chance it will work.'

>

> At no point during our conversations does he ask to see any medical

> records. A more sympathetic character is Dr Asha Rekha

Chagarlamudi,

> a locum GP who runs 'The Autism Clinic' one day a week from her

home,

> a semi-detached house on a private estate in Bromley, South-East

> London. She's a parent of a child with autism, so it would be hard

to

> believe her motivations are anything but genuine.

>

> Yet she recommends Archie should have intravenous chelation therapy

> and 40 sessions of Hyperbaric oxygen therapy (HBOT), which would

> involve my 'son' sitting in a decompression chamber similar to

those

> used by divers suffering the bends.

>

> She takes a medical history and says: 'Archie's symptoms are caused

> by inflammation of the brain. Chelation therapy will help eliminate

> the poisons from the blood which cause this - and HBOT will reduce

> the swelling.

>

> 'Chelation is most effective given by intravenous infusion, which

you

> can only get in America because doctors here won't do it.' She does

> not mention the recent death caused by this treatment.

>

> Harley Street-based Dr Damien Downing, who claims to be a 'leading

> figure in the field of nutritional health', is also keen on

> chelation. During our consultation I'm asked to fill in a

> questionnaire to assess the severity of Archie's condition.

>

> Toxins are everywhere, rubbish dumps, incinerators, mobile phone

> masts, microwaves, vaccines – this caused your son's autism,' says

> Downing, who charges £250 per consultation. `Chelation in the form

of

> an that is rubbed on to the skin will him of the toxins, and many

> children are completely normal after. You must be committed to at a

> year of treatment, if not more, before you see results.'

>

> The treatment is a cause for debate even among committed DAN!

> practitioners. In Dublin I meet Dr , a specialist in

> chelation therapy for adults, who tells me tries to dissuade

parents

> from giving their autistic children intravenous infusions `not

> because it's dangerous, but because it isn't effective in clearing

> mercury from the blood'. Consequently, Archie was not suitable for

> treatment.

>

> He also warns that some `DAN! doctors' are less than reputable.

`All

> need to do is attend one conference in the US and you can say

you're

> DAN! doctor – and many of them aren't medically trained.'

>

> Dr Lorene Amet, of the Autism Treatment Trust in Edinburgh, is one

> such non-medic. Her doctorate is in HIV biology although she

doesn't

> clarify this during the £120 consultation.

>

> Amet takes a medical history, asks about behaviour and diet, and

> recommends a series of blood and urine tests that she says are not

> available on the NHS because `doctors don't know about them'.

>

> She continues: `The tests give us a complete picture of your

child's

> health and what has caused his autism. From the results we will

> design a diet and supplements plan. He could recover completely but

> early intervention is the key – you must act now or you'll regret

it.'

>

> I've been offered a bewildering number of treatments, but could any

> of them be right? Could any really work? At the end of the

> investigation I speak to Mills, a director of Research

> Autism, a coalition of parents, those with autism, academics and

> medical experts, set up by the National Autistic Society (NAS) and

> the Institute of Child Health to study new treatments for autism.

>

> `Your experiences are not uncommon,' he says. `There is no evidence

> that any of these treatments work. There is evidence that some do

not

> work, and even could do harm.'

>

> Mills, who has worked in the field of autism research for the past

30

> years, describes the helplessness and despair parents feel when

> trying one unsuccessful treatment after another.

>

> `Parents often tell us they weren't made aware of possible negative

> effects and many spend thousands, running up bills on credit cards,

> on treatments that don't work.

>

> `Many of the practitioners who sell these treatments are no better

> than snake-oil salesmen. This kind of hard-sell approach is

> completely immoral. Lack of regulation means anyone can set

> themselves up and claim to be able to successfully treat autism,

> without any proof that it's actually possible,' he says.

>

> Still, I can't help but think that if Archie were real, I'd be

> willing to try anything, and pay anything for a chance to help him

> live a normal life.

>

> Dr Gillian Baird, consultant paedi-atrician at Guy's Hospital,

> London, and a leading expert on autism, explains that although

autism

> is incurable, some children can improve.

>

> `We know that there is something biologically different about the

> brain function of children and adults with autism, but we don't

know

> what that is or what causes it,' she says.

>

> `There are accounts of treatments that have helped but this is not

> the same as evidence. The reason some parents believe they see

> improvements is because autism A is a condition that changes over

> time. And behav-iour in all of us can be altered by environment and

> what we put into our bodies.'

>

> She warns parents that invasive treatments, such as injections,

carry

> a risk of infection.

>

> Mills advises parents to ask to see research to back up any claims

> and ask for copies of any published studies to discuss with a GP or

> consultant.

>

> `These practitioners often claim mainstream doctors aren't

interested

> in helping children get better. This is not only completely untrue

> but hurtful. Doctors who devote their lives to working with them

> every day would like there to be a successful treatment for autism

as

> much as anyone – they know just how desperate parents are for an

> answer.'

>

> Jacqui urges parents of children with autism to think again

> before subjecting them to unproven treatments. `Perhaps we should

> begin to look at autism as another way of being, instead of hoping

to

> find a cure,' she says.

>

> `These doctors promise they can make autistic children " normal " .

But

> who is to say what normal is?'

>

> For information about autism treatments, visit

www.researchautism.net.

>

> Here Research Autism Director Mills gives his verdict on

the

> treatments recommended by the doctors. The Mail on Sunday then also

> offered the doctors a chance to comment on the findings of our

> investigation.

>

> THE CONSULTATIONS

> Here Research Autism Director Mills gives his verdict on

the

> treatments recommended by the doctors. The Mail on Sunday then also

> offered the doctors a chance to comment on the findings of our

> investigation.

>

> Dr O'Connell

>

> Who: Dr O'Connell, 41 Elystan Place, London

>

> Consultation fee: £350

>

> Recommends: Blood and urine tests, secretin injections once a

month,

> immune globulin infusions and dietary supplements

>

> Cost: £1,996

>

> Mills' verdict: Secretin is a hormone that helps digestion.

> Some think its injection will ensure food is properly digested and

> stop harmful chemicals from food travelling to the brain.

>

> There is overwhelming evidence from double blind clinical trials to

> show that secretin works no better than a placebo in treating

autism.

> But some studies report there are negative effects. The use of

> secretin is not recommended for people with autism.

>

> Dr O'Connell says now: I would agree to treatment only after

> examining a child. With any drug there are studies that show it

> doesn't work, as well as those that do.

>

> The studies that found secretin didn't work were badly designed.

I've

> not published my findings in peer reviewed journals because I am

> unwilling to submit children to double blind trials.

>

> Dr Lorene Amet

>

> Who: Dr Lorene Amet at the Autism Treatment Trust, 29A Stafford

> Street, Edinburgh

>

> Consultation fee: £120

>

> Recommends: Urine tests and tests for DNA oxidation; hair test for

> heavy metals; a four-hour appointment to look at test results;

wheat

> and dairy diet plan; and supplements

>

> Cost: Tests £480, follow-up appointment £400

>

> Mills' verdict: Some children with autism have a higher

> incidence of gut problems, and there is anecdotal evidence that

diet,

> especially one that is wheat and dairy-free, is helpful in treating

> the physical and behavioural symptoms of autism, but these are not

> regarded as curative treatments. Because autism is so broad and is

> not a single condition, there are no specific laboratory tests to

> determine the causes.

>

> Dr Lorene Amet says now: We have had positive reports from eight

out

> of ten parents. Some children do not progress. Mainstream medicine

> has failed many of the children we see. We are here to help parents

> safely explore alternative treatments. More research is needed and

we

> are applying for funding.

>

> Dr Asha Rekha Chagarlamudi

>

> Who: Dr Asha Rekha Chagarlamudi, The Autism Clinic, Bromley, South-

> East London

> Consultation fee: £100 (she later agrees to waive this if there

> are 'problems with money')

>

> Recommends: Blood, urine and stool analysis, hyperbaric oxygen

> therapy, chelation therapy

>

> Cost: Tests £775, 40 HBOT sessions £400

>

> Mills' verdict: Hyperbaric therapy is the administering of

> oxygen at a higher

> than atmospheric pressure to a patient in a pressurised chamber to

> increase oxygen absorption in bodily tissue. It is usually used for

> decompression sickness or carbon monoxide poisoning. Side-effects

> include trauma to the ears due to pressure and oxygen toxicity,

which

> causes nausea, vomiting, convulsions, inflammation and fluid

> accumulation in the lungs. There is little evidence it is effective

> for autistic children. Use of oxygen has risks and we would advise

> caution.

>

> Dr Chagarlamudi says now: HBOT is being given to children with

autism

> in Dundee on the NHS. There have been no double blind trials but

> smaller studies are needed before that happens. Chelation has risks

> but is safe when carried out correctly. I make a third less per day

> from my autism clinic than I do in general practice. I believe

these

> treatments do cause improvement in children. Someone has to start

> trying to so something or we will never find a cure.

>

> Dr Damien Downing

>

> Who: Dr Damien Downing, 144 Harley Street

>

> Consultation fee: £250

>

> Recommends: Urine toxic metal test and blood deficiency tests.

> Dependent on results, chelation therapy - administered topically as

> oil rubbed into the skin

>

> Costs: Tests £200, follow-up appointment £150, chelation £97 per

> seven applications

>

> Mills' verdict: Chelation can be dangerous. Chemical

> compounds injected into the bloodstream, taken orally, topically or

> by suppositing, bind to metals that are present in toxic

> concentrations which are excreted from the body. There is no

> scientific evidence it is effective in the treatment of autism.

Side-

> effects include nausea, vomiting, headaches and kidney damage.

>

> Dr Downing says now: Heavy metal damage as a cause of autism is

> coming to be widely accepted. Many doctors agree that the removal

of

> metals is the most useful treatment available. There is no evidence

> that chelation could be life threatening except when given by

> injection.

>

> AUTISM EXPLAINED

> The term 'autism' refers not to a single illness but to part of a

> wide range of conditions - so-called Autistic Spectrum Disorder

> (ASD) - with many features that may or may not be present in a

> given child.

>

> Classic autism, which affects one in 100 children in the UK,

> according to latest figures, typically involves associated learning

> difficulties and problems with language, as well as a tendency for

> obsessive and repetitive behaviour, with varying degrees of

severity.

> Part of the Daily Mail, The Mail on Sunday, Evening Standard &

Metro

> Media Group

>

> Find this story at

> http://www.dailymail.co.uk/health/article-1023351/The-great-autism-

rip---How-huge-industry-feeds-parents-desperate-cure-children.html

>

> Many others talking about this

>

> " I had to pinch myself to check I was actually awake and not

dreaming when this landed in my inbox this morning.

>

> This is a truly excellent piece of journalism on autism and the

growing CAM (Complimentary and Alternative Medicine) industry (Small

Pharma?) that surrounds it. And its in the Daily Mail.

>

> I can imagine many people choking on their cornflakes this

morning. A little JAB of reality,

>

> The reporter went to see a few DAN! registered UK docs. The

experience wasn't pretty. One made outlandish claims for Secretin

but didn't ask for any medical records. One pushed chelation and

never mentioned Tariq Nadama. Another said the reporter would have

to commit to a year of rubbing in a skin cream chelator of dubiouis

eficacy. Dr Lorene Amet failed to disclose that she wasn't actually

a doctor of medicine (its not uncommon for DAN! `doctors' to not

actually be doctors).

>

> Its a highly revealing piece of a grubby, grasping little world

that preys on the parents of autistic people. Thanks are due to the

Mail for reporting on this so accurately and thoroughly. "

> http://leftbrainrightbrain.co.uk/?p=847

>

> =====

>

July 3, 2008

Re: To me the point of the article is that due to the fact that one can

just attend a DAN conference and call themselves a DAN doctor it's

creating a problem as many desperate parents are not aware that not

all that call themselves doctors are medical doctors.

No longer true in the U.S. The ARI practitioner list separates

practitioner lists and doctor lists. I am not sure about solely a

conference requirement as well but can't recall the specifics of any

rule change.

July 3, 2008

you probably are a bit newer because I will post anything that

IMO is important reading for this group. If you don't want to read

it then delete it- but why wouldn't you want to read it? The article

was a brilliant work of investigative journalism that shouts caveat

emptor.

I already posted that I know there are some good DAN MDs who have

helped children -you may have missed that. My problem personally is

that this group is for all types of " late talker " children from those

with simple delays in speech to those with apraxia, autism...even

hearing impaired children. Biomedical outside of the basics of fish

oils is a good option for those that need the more extreme because

traditional speech and occupational therapy as well as some fish oils

and vitamin E isn't working -but it's not necessary for but a few.

It's like trying to kill a mosquito with a cannon. It's expensive

and possibly dangerous and overkill -well maybe not in that example

because you'll probably just annoy the mosquito. To me extreme

biomedical approaches are not a first step and again it's a step you

may never need to take. Many of us never did anything more than a

few drops of fish oil with our therapy over the years and the

prognosis over the years has been high -our children blend in the

mainstream. Can you get better than that? I hope the good fortune

of the old timers in this group continues with all of you that are

new on this extreme biomedical road as the conversation used to be

more about therapy and education to help advocate for your child.

That's what we cared about talking about most of the time.

Some of you may have missed it but speechgrl who I answered with this

article is a school based SLP. Isn't there anyone who would like to

ask her a question as I'm sure she can offer help...to just about

everyone with a preschool or school age child!

=====

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