The great autism rip-off ... How a huge industry feeds on parents desperate to cure their children

[Guest guest]

The great autism rip-off ... How a huge industry

feeds on parents desperate to cure their children

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

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

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becoming mute, withdrawn, refusing to make eye contact and prone to tantrums.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.

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.

'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, a

former GP. 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, who I guess to be in his

early 60s - 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 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 oil that is rubbed

on to the skin will rid him of the toxins, and

many children are completely normal after.

'But you must be committed to at least 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 he

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 you need to do is attend one conference in

the US and you can say you're a 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 paediatrician 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 is a condition

that changes over time. And behaviour 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.

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.

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.

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.

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.

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.

________________________________