Biomedical therapy for autism - response to recent Singapore press reports
|
Biomedical therapy for autism recently came under heavy criticism in two reports in The Straits Times: Autism 'cures': helpful or harmful? (11 August 2008) and Desperately seeking a cure (16 August 2008).
Earlier in the year, the Singapore Medical Council ordered doctors to stop using Hyperbaric Oxygen Therapy (HBOT) and nutritional supplements - two key elements of the biomedical approach - for the treatment of autism.
It was reported in The Straits Times that the Ministry of Health has set up a committee to scrutinise alternative autism treatment and make recommendations to families. The chairperson of the committee has already called to question the safety of CFGC diets, health supplements and injections.
We stand by our belief that biomedical therapy is safe and that it plays an important part in the recovery process of an autistic child. We have also written to The Straits Times to clarify points raised in its reports about the alleged "harm" and "lack of evidence" of biomedical therapy.
However, The Straits Times informed us that they will NOT PUBLISH the letter, citing "lack of space" as an excuse. In any case, our letter to ST Forum was restricted to 400 words. Below is our fulller response:
Autism treatment has been in the news in Singapore with two major reviews by senior journalists within a week. While the commentary by Dr Andy Ho has been largely factual, the other report relied substantially upon hearsay while lamenting the lack of evidence in complementary medical practices.
The reports, epecially the first, were also peppered with emotive words like "bewildering", "bizarre" and "voodoo". Cutting through the emotive use of adjectives, this article seeks to comment on the issues raised. Comments will be limited to biomedical therapy in autism.
| |
The use of drugs off label
By and large, doctors who practise complementary medicine are suspicious of drugs. They prefer evidence-based use of nutritional supplements where possible.
The use of Avandia and Actos, two drugs which Dr Andy Ho described as "ptotentially deadly", is not widespread in biomedical treatment. Where a drug is used in biomedical therapy, it is usually used to treat a co-occurring condition such as an established yeast infection.
Mercury, vaccines and autism
Whether mercury or some other substances in vaccines contributed to the increased cases of autism in recent decades is being debated hotly within the scientific community.
There are data both ways - those that show a link between mercury and autism, and those that show no link. Click here to read more about mercury and autism.
One set of data used to prove that there is no link between autism and vaccines was mysteriously erased from the database of the US Center for Disease Control. This has sparked accusations of a pro-vaccine cover-up because now nobody can verify the data, nor can anyone dispute that the data was not properly interpreted. The battles are being fought in the US where freedom of information is enshrined in the US constitution.
We have not seen the last word on this issue. Just in case the wind blows the wrong way, it is best for respectable medical professionals - and parents of young children - to keep an open mind on the issue.
Whatever the outcome, there are published papers that show autistic children do have more body burden of mercury compared to non-autistic children.
| |
There is a mistaken notion among people not involved in biomedical therapy that chelation is used to treat autism. This is not the case. Chelation is used to treat heavy metal toxicity.
If a heavy metal burden is established in an autistic child, chelation is justified. Clinically, such children have been known to show reduction in autistic symptoms, sometimes dramatically.
Click here to read more about the role of chelation in biomedical therapy.
The drug of choice for chelation in autistic children is DMSA. This is a FDA approved drug for chelation in cases of acute lead poisoning, even in children. There are many published research papers that show DMSA to be also effective in chelating mercury and other heavy metals.
The use of chelation in chronic mercury poisoning is known as off label use. Two drugs, Risperidone (Rispidol) and methylphenidate (Ritalin) are often used off label in autism treatment as well (see comments below).
Off label use of drugs is widespread and appears to be a generally accepted practice. Off label use of drugs is not quack medicine as suggested by people not familiar with biomedical therapy.
Contrary to popular belief, there has been no death associated with the use of DMSA.
The case of the death of one autistic boy while undergoing chelation involved the improper use of another chelation drug called EDTA. This drug is normally dripped into the blood stream over two to three hours. In this instance, the doctor concern had injected the drug instead.
Click here to read more about the case of Abubakar Tariq whose autopsy showed that he, in fact, died from accident - not from chelation.
Nevertheless, EDTA is not the drug normally used in biomedical therapy for autistic children. Neither is intravenous administration, as implied by the ST article.
DMSA is normally administered orally, as a skin cream or as a suppository. Perhaps those who are constantly crying wolf over the dangers of chelation would care to make this distinction in the future and stop the fear mongering.
Nonetheless, there are risks involved in the use of DMSA in autistic children. This is why a medical doctor should be willing to take responsibility for patient safety.
However, some parents are already doing chelation on their own. It is therefore in the best interest of families for the government to draw up proper medical guidelines and allow doctors to administer chelation in Singapore officially.
Other issues of safety like special diets and nutritional therapy have also been called to question.
Special diets
There are published papers that show the CFGF (Casein Free Gluten Free) Diet to be safe and very useful in reducing autistic symptoms in most autistic children. Those who doubt this obviously have not read the papers nor have any clinical experience in guiding families with the diet.
Click here to read a more detailed response about the CFGF Diet, and here to learn more about the benefits of the CFGF Diet for children with autism.
Nutritional supplements
With regard to nutritional supplements in biomedical therapy, supplements are available freely in the open market. With very few exceptions, these have a very large data base of long term safety, even in mega doses.
Perhaps the only nutrient not generally available is injectable methylcobalamin (an active form of Vitamin B12). This is not a new therapy. Doctors have been injecting people with methylcobalamin safely for decades.
Methylcobalamin is water soluble and is completely non-toxic even at super mega doses. Since 2002, there has been some hardcore scientific evidence that show the normalising of dysfunctional biochemistry of autistic children with the injection.
Click here to read more about Vitamin B12 therapy for autism.
HBOT
Hyperbaric Oxygen therapy (HBOT) is also not new, although it is a recent addition to biomedical therapy for autism. HBOT itself has been around for decades. Many hospitals, including Tan Tock Seng Hospital and Singapore General Hospital, offer HBOT.
HBOT involves having a patient enter a pressurised chamber and breathing pure oxygen for an hour or more. The safety and efficacy of this procedure have been well established in published papers. FDA has approved it for non-healing diabetic wounds, clostridial myositis and neurological conditions like acute traumatic ischemias.
Off label, HBOT has been used for neurological conditions like chronic and acute stroke, Alzheimer's Disease, cerebral palsy, ADD, depression, dementia, comma, epilepsy and autism.
Some research has implicated clostridia (a bacterium) infection in autism. Clostridia is a very persistent bacteria, just like yeast. They can also be found in the intestines and are very hard to eradicate. HBOT seems to kill clostridia.
Click the following links to learn more about HBOT in biomedical therapy for autism:
While not every child undergoing HBOT has benefited, no one has ever been reported to be harmed. On the contrary, many families have reported benefits.
In the US, soft HBOT chambers of up to 4 psi without oxygen are approved by the FDA for home use as a Class IIa medical device. In Singapore, however, HBOT and Nutritional Therapy were recently forbidden for autism use by authorities in Singapore for "lack of evidence".
Level of Evidence
In medical science, the highest level of evidence is replicable multi-centre double blind control trials. Even with such a level of evidence, it is accepted that not every patient will benefit from the therapy. Some may even suffer adverse reactions.
The design of such trials dictate that a single mode of therapy be evaluated for its impact on the symptoms of the disease while controlling for influences from other therapies.
In the case of multi-causal complex condition like autism, it is almost impossible to design such trials. Try telling families to stop ABA, Speech Therapy and Occupational Therapy while undergoing a drug or HBOT trial and there will be few takers for the trial.
So such gold standard evidence are unlikely to be found in autism treatment. To demand for such levels of evidence before something like biomedical therapy can be approved for use in autism would be most unwelcomed by parents.
There are also no such gold standard trials in generally acceptable interventions like ABA, Speech Therapy and Occupational Therapy. Yet, parents use them because they have seen improvements in their children. Any therapy that is not useful will soon die a natural death, whether it is officially recommended or not.
The Issue of Costs
Autism therapy is necessarily costly because of the individualised nature of the therapy. Even group sessions have to be kept small.
Families sending their children to NCSS, MCYS and MOE sponsored schools typically spend about $8,000 a year (including special transport arrangements). Yet, the fees are already heavily subsidised by the government and voluntary welfare organisations.
Sometimes, families realise that what is being provided by such schools may not be enough if their children were to attain some measure of independence in life. Private offerings of acceptable (and government paediatrician recommended) therapies can easily amount to $12,000 to $30,000 a year. Biomedical therapy typically falls within the lower end of the range.
Gullible parents and recovery stories
With such large stakes, most parents do make it a point to research and question their consultants before embarking on biomedical therapy. Parents who can afford the therapy are generally well-educated. They include PhDs, MScs, engineers, lawyers and even medical doctors. Many continue the treatment because they see the benefits.
There are some families whose children are now essentially undistinguishable from other children in the normal primary schools they attend. Some families are willing to be interviewed by reporters.
It is hoped that The Straits Times, having deem it fit to print two damning reports about biomedical therapy within a week, will take up the offer to interview parents who have succeeded in recovering their children to a high level of independence with the help of biomedical thearpy.
What then could be the Real Objection to Biomedical Treatment?
We speculate that the lack of gold standard evidence may not be the real reason why biomedical therapy is frowned upon. There are many generally accepted treatments that do not rest on such stringent criteria as well.
The drug Risperidone was approved in 2007 by the FDA for use only in aggressive behaviour in autistic children. However, it is now generally used to treat autistic children, whether aggressive or not. We see nothing wrong with this, as long as the side effects are acceptable and the child benefits.
Risperidone has been found to cause weight gains, diabetes, high cholesterol and even deaths in elderly dementia patients. It has a long history of use in schizophrenia but not in autistic children. The long-term side effects in the autistic population are largely unknown.
Yet its use in autism is tolerated because the therapy is regarded as "generally acceptable" practice. HBOT and nutritional therapy, while far safer, are not "generally acceptable" and therefore not welcomed.
Timely review
The decision by MOH to form a committee of experts to review autism treatment is timely and welcomed. A lot is at stake for families of autistic children in Singapore. We are confident that the committee will do its due diligence before making its recommendations to the families.
We feel the committee should go further than that. We recommend that the committee should weigh the available evidence and come up with practical guidelines for doctors so that the more sympathetic ones will dare come forth to help parents.
Such guidelines should not be just based on the availability of academic gold standard evidence. Such kind of evidence for autism will not be available within the foreseeable future. Doing so could well upset parents who are looking for practical and helpful information. Guideline should consider relative safety, sound theory and patient feedback.
Families need something reasonable that can help their children now. If they cannot find a doctor willing to support them, they will naturally seek out non-medically trained people who are willing to help.
But parents are no fools; they have been scrutinising their consultants for qualifications and knowledge.
We, too, wish the committee well.
We also extend our well wishes to the families affected by autism that they will get the practical support that is so badly needed.
John Yeo, MSc
16 August 2008.
| |