The great autism rip off (daily mail article)

[Guest guest]

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they suddenly 'regress', becoming mute, withdrawn, refusing to make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

© 2008 Associated Newspapers Ltd

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).

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

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