Autism: how unorthodox treatments can exploit the vulnerable

A diagnosis of autism can make it tempting to turn to alternative treatments. But weighing up the scientific evidence is crucial - and potentially life-saving

What’s in the bottle? It’s important to use critical thinking before using a preparation or treatment, even if it’s been suggested with the best of intentions. Photograph: Unknown/Bettmann/Corbis

As a rule of thumb, the more desperate and vulnerable you are the easier you are to exploit, with anything from financial advice to lifestyle tips. A diagnosis of an incurable disease; a child with a serious developmental disorder: these are circumstances that see many people seek unorthodox solutions, either as a way of coming to terms with what has happened, or in an attempt to find a treatment that perhaps the mainstream has not yet embraced, but which will give relief or cure.

However, some alternative products and techniques are not merely controversial, they are potentially dangerous. Recently in mainland Ireland, a number of parents have been interviewed by police as part of an on-going investigation with the Health Products Regulatory Authority. These parents are thought to have administered a substance known as MMS to their autistic children. MMS has been known variously as Master Mineral Solution, Miracle Mineral Solution and Miracle Mineral Supplement.

MMS is the brain-child of Jim Humble, a former scientologist turned health evangelist, who styles himself as the archbishop of the Genesis II Church of Health. MMS is promoted as a healing solution, and the church’s website links to testimonials attributing it with being effective for a range of ailments, including autism, Aids, cancer and malaria. Yet a chemical analysis of MMS shows it to be a slightly more earthly concoction: bleach.

Specifically, MMS is about 28% sodium chlorite, a toxic compound which has been shown to cause acute renal failure. Ingestion of even a gram can cause nausea, vomiting and occasionally life-threatening haemolysis. Were this not bad enough, users are directed to add an acidic agent, such as citric acid, and ingest the resultant mixture. The acid reaction with sodium chlorite yields chlorine dioxide: a powerful and toxic bleaching agent. Naren Gunja, director of the New South Wales poisons information centre in Australia, has likened taking MMS to being “a bit like drinking concentrated bleach”. Symptoms of ingestion tend to be consistent with corrosive injuries: vomiting, violent stomach pains, diarrhoea and even respiratory failure, if mixed wrongly. The substance pops up with depressing regularity, prompting health warnings from the Canadian and UK authorities, among others. Its supporters cite this toxicity as evidence the product is working. In the Irish case, it is alleged in at least one report that the solution was administered to autistic children orally, and in some cases rectally via enema.

This has raised timely questions over how “treatments” can circumvent stringent laws on medical interventions across Europe and beyond. Part of the reason is that MMS and preparations like do not classify themselves as medicines. In the case of MMS, it had circumvented the possibility of regulatory inspection by marketing itself as a “water purifier” – a valid description of the its chemical nature, but not its intended application, leading the Irish Health Productions Regulatory Authority to describe the methods of MMS promoters as “underground and unorthodox”. 

Of course, officially, the cheerleaders of MMS and Genesis II do not sell it for legal reasons. Instead it is available in return for a monetary donation and evangelised as a lifestyle choice, complete with guides on using the solution as an enema or how to prepare baby bottles for adults and children with the toxic solution. Despite this legal distancing, BBC obtained under-coverage footage last month of a UK MMS promoter (who is listed as a supplier on the Genesis II church website and styles himself as a reverend of the church) selling MMS and advising on its use for a child with autism. Such is the concern about the effects of the product and its appeal to the vulnerable that Trading Standards officers attended a recent MMS seminar in Surrey to ensure no MMS products were being sold and to distribute advice from the UK Food Standards Agency.

MMS, its suppliers and the Genesis II Church are but a tiny part of a bigger problem – the sheer range of dubious therapies aimed at autistic people and their families. These therapies tend to offer a simple root cause for the disorder and claim their invention can reverse it. This in itself is misleading: the question of what causes autism is an open and complex one. There is considerable evidence for a strong predominant genetic determinant, but no single smoking gun gene has yet been located. Environmental factors, too, have been suggested, but evidence for these is rather mixed. The complexity of the disorder, plus the sheer variation in how it can manifest suggest a complex condition with an array of modifying variables. Therefore, even if offered with the best of intentions, unproven therapies can have dangerous consequences. 

Given the uncertainty around autism, therefore, there are plenty of practitioners rushing to fill the vacuum with all sorts of ostensible cures – frequently at a price. And too often this cost not only monetary, but poses a threat to the physical and mental health of vulnerable families. Despite the plethora of well-marketed options, so far none of them have shown through clinical tests or approved trials that they are effective. The spread of lifestyle advice and supplements being offered ranges from relatively benign interventions such as gluten-free diets or raw camel milk, to potentially dangerous ideas like MMS.

One particular theory which refuses to vanish hails back to the autism-vaccination scares of the early 2000s. While peak panic subsided by the early 2000s, we still wrestle with the fallout from scores of children who were not immunised due to parental apprehension. 2011 alone saw over 26,000 cases of measles in Europe, including 9 deaths and 7288 hospitalisations, with the 2013 outbreak in Wales infecting more than 1200 and resulting in at least one death. 2014 infections in the UK surged to 20-year highs and even America, once practically measles-free, has seen a rise in infection rates, with 678 cases in 2014. A single infected person visiting Disneyland lead to at least 150 cases of the disease this year, with authorities noting that “substandard vaccination compliance is likely to blame for the 2015 measles outbreak”. To add insult to injury, the narrative linking the MMR vaccine to autism continues to fuel unorthodox therapies for autism.

Chelation therapies are one such class of intervention, based on the belief that vaccines are somehow damaging and can be “flushed” out with certain chemical. This is often coupled with the belief that metals such as mercury, which may be present in some vaccines, cause “heavy metal” damage and need to be flushed out, despite the well-documented scientific studies showing this to be unfounded. It is also a potentially a dangerous belief. Academics have expressed their concern about the use of chelation therapy in children with autism after the death of a child. Although this death was believed to have been through an error in administering the therapy, a review of practice around children with autism led to the report authors expressing serious concern about the safety of methods and drugs being used.

One prominent variation of the vaccine/autism link is the theory espoused by former physician Mark Geier. He believes that testosterone binds to the mercury in vaccines to cause autism, a hypothesis which has been vigorously rebutted by leading endocrinologists. Nevertheless, Geier and his son David offered treatment to counteract the interaction of testosterone and mercury by prescribing autistic children with Lupron. Lupron is an incredibly potent medication which can shut down bodily hormone production, with serious attendant risk of damage. It is also used to chemically castrate sex offenders.

These interventions were not only potentially damaging, but costly. An exposé in the Chicago Tribune reported treatment costing an eye-watering $5000 per month in addition to about $12,000 in tests. Grier senior has frequently appeared as an expert witness in vaccine damage trials, attesting to their danger, despite the fact that the American Academy of Paediatrics refer to “numerous conceptual and scientific flaws, omissions of fact, inaccuracies, and misstatements” in his most-cited study. In 2013 the last of his medical licenses in the US was revoked. 

Other therapies offered for autism are based on the idea that autism is an auto-immune disorder, although this has certainly not been proven. One popular treatment is the immune system-modulating protein Gc protein-derived macrophage activating factor, or Gc-MAF for the sake of brevity. In 2008, a flurry of excitement was whipped up over the supposedly miraculous results of this protein in cancer treatment, but these claims were subsequently retracted when the evidence for them was shown to be dubious. But while science might be self-correcting, the market for alternative medicines is nothing of the sort. Gc-MAF treatments are now offered for a large range of illnesses, including autism and cancer, with the science behind the treatment being strongly criticised by groups including Cancer Research UK. This doesn’t stop vulnerable patients being charged high fees and possibly harmed: the First Immune clinic in Switzerland offered the therapy for about €5000 a week. This clinic is currently under investigation with all its equipment seized over five suspicious deaths last year. Sadly, the First Immune clinic is far from alone in offering treatments such as Gc-MAF which have not been properly approved for medical use. 

So if these therapies are ineffectual at best and dangerous at worst, why do they remain so popular and profitable? Fierce belief in a theory the face of conflicting scientific evidence is a topic I’ve touched on before. Claims of conspiracy are often thrown about when scientific scepticism about a therapy is voiced: we saw it when company Immuno biotech alleged that the chemotherapy is a killer or when Alliance for Natural Health claimed that the Medicine and Healthcare products Regulatory Agency MHRA is a corrupt organisation putting patients at risk. Searching “autism” on Natural News immediately yields articles claiming a giant pharma / CDC / media conspiracy is at hand. As I have previously written for this paper, these myths are nothing new and readily debunked.

There is another stronger and sadder reason why these therapies might remain popular, despite the warnings of medical and health professionals. It’s because they hold the promise of relief. Autism can be a challenging disorder to manage or live with, with many people with autism not having the communication skills to function independently . This can be stressful for both those affected and their caretakers, with the promise of a miracle cure perhaps alluring enough to take exceptional risks and suspend critical thinking.

But perhaps the stigma of autism spectrum disorder is partly to blame. Irish campaigner and leader of Autistic Rights Together (ART) Fiona O’Leary has worked to bring critical attention to the activities of the Genesis II church. Fiona is on the autism spectrum, and is a mother to two autistic children. The negative view taken of those who are neurologically atypical is something she herself addresses directly: “... the continuous negative rhetoric and misinformation parents have been convinced of due to large anti-vaccination movements is that autism in an acquired disease, and their children are toxic, polluted; trapped - I believe the real issue is acceptance” .

Protecting vulnerable families from unproven and potentially dangerous treatments is a priority for ART, who are pushing for legislation to prevent any dubious operators exploiting gray areas of the law. Yet the international scope of the problem makes this a daunting and perhaps Sisyphean task. It seems a depressing reality that while desperate people exist to exploit, scientific reality will often be ignored and dubious fictions substituted in its stead. 

Source : theguardian

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