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

By Barney Calman

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is that children often develop normally until about two years of age, when they suddenly 'regress', becoming mute, withdrawn, refusing to make eye contact and prone to tantrums.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.

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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 Jackson, 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 Jackson family - including Matthew, 24, Rachel, 22, Sarah, 20, Luke, 19, Anna, 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 Carter 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.'

Jacqui with her four sons who all suffer from autism - from left, Matthew, Luke, Ben and Joe

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.

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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 David 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.

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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 Gabriel Stewart, 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 Richard 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.'

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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 Jackson 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

Daily Mail - UK Last updated at 11:00 PM on 31st May 2008

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