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is that children often develop normally until about two years of age, when they suddenly ‘regress’, becoming mute, withdrawn, refusing to make eye contact and prone to tantrums.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.
Desperate: Jacqui Jackson, who has five children with ASD, knows the allure of a promised ‘cure’ all too well
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.
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.
The Jacksons: Back row, from left: Anna, Matthew, Sarah (who along with the four boys also has autism) and Rachel. Front row: Joe, Jacqui and Ben, and Luke
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.
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.’
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 www.researchautism.net.
Here Research Autism Director Richard 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 David O’Connell, 41 Elystan Place, London
Consultation fee: £350
Dr David O’Connell
Recommends: Blood and urine tests, secretin injections once a month, immune globulin infusions and dietary supplements
Richard 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
Richard 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
Richard 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
Richard 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.
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.
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