‘Outlandish therapies’ exploit families of autistic children

Opinion: Misinformation about autism leaves many at risk from ‘purveyors of snake oil’

Due to continuous misinformation, some parents are convinced that autism in an acquired disease

Due to continuous misinformation, some parents are convinced that autism in an acquired disease

 

For as long as people have fallen ill, there are those who hawk dubious elixirs bereft of efficacy. In the late 1800s, Clark Stanley amassed a fortune with such an ointment, allegedly drained from the skin of rattlesnakes – which, in reality, consisted primarily of mineral oil.

Since then, “snake-oil” has become a catch-all term for ostensibly medical but utterly ineffectual concoctions. Yet even now snake-oil treatments remain resolutely popular, ranging from the merely useless to the actively harmful. The single contemptible trait uniting these diverse cure-alls is that they are inevitably pushed most aggressively upon the desperate and vulnerable, such as those diagnosed with incurable diseases, chronic conditions or terminal illness.

Children with developmental disorders are frequently targeted with unorthodox wares. In particular, families of autistic children are mercilessly pursued by purveyors of snake-oil, with potentially deadly results.

Miracle Mineral Solution is but one example of this. The innocuously named MMS is a product created by Jim Humble, a one-time Scientologist who more recently styles himself as archbishop of the Genesis II Church of Health & Healing.

Miracle Mineral Solution (MMS) is a product created by Jim Humble, an-ex Scientologist who now styles himself as “archbishop” of the Genesis II Church of Health & Healing.
Miracle Mineral Solution (MMS) is a product created by Jim Humble, an-ex Scientologist who now styles himself as “archbishop” of the Genesis II Church of Health & Healing.

Marketed as a cure

The mixture is heralded as having amazing curative potential, effective for ailments as diverse as Aids, cancer and malaria. Most frequently, it is marketed as a cure for autism, with suppliers charging €30 a bottle and pitching expensive seminars to the parents of autistic children. But far from being heaven-sent, chemical analysis of MMS reveals it as a somewhat more terrestrial compound: bleach.

More specifically, MMS is about 28 per cent sodium chlorite, and toxic enough to induce acute renal failure. Ingestion of even a gram can result in nausea, vomiting and occasionally even life-threatening haemolysis.

Ingesting such a mixture would a bit like drinking concentrated bleach

As if to compound matters, MMS users are advised to add an acidic agent before ingesting. The resultant reaction yields chlorine dioxide, a dangerously toxic bleaching agent.

It is hard to overstate how inadvisable ingesting such a mixture would be. In the words of Naren Gunja, director of  New South Wales Poisons Information Centre, this would be “a bit like drinking concentrated bleach”.

Symptoms that follow ingestion are consistent with corrosive injuries – violent pains and spasms, vomiting, diarrhoea and sometimes respiratory failure.

Yet despite the insanity of such an intervention, proponents insist the acute toxicity is evidence that the cure is working. And buoyed by the unfounded promises made by MMS evangelists, the substance is regularly peddled to parents of autistic children. Consequently it arises with concerning regularity the world over, and to date has prompted health warnings in Canada, Australia and the UK.

It recently cropped up in Ireland. In 2015, the Garda interviewed a number of parents who were using the substance on their autistic children. In some cases, administration was not only oral but through bleach enema.

MMS is as a dangerous form of quackery which, in essence, entails aspects of child abuse

The same year, the Genesis II church held a seminar for the parents of autistic children in Kildare; attendees were charged a €350 donation fee. Following investigations by the HPRA and the Garda, Patrick Merlehan was convicted in October 2016 for supplying MMS in Ireland.

In addition, a Belfast doctor, Finbar Magee, was declared not fit to practise by the General Medical Council for promoting MMS.

Not fit to practice

While no parents were charged in the investigation, the spectre of abuse is hard to overlook. Barnardos Ireland chief executive Fergus Finlay has described MMS as “a dangerous form of quackery which, in essence, entails aspects of child abuse”.

Alarmingly, legal action across the world has not been enough to deter MMS-autism advocates selling the harmful substance, and a proliferation of Facebook pages and forums hail it as a miracle cure.

MMS is in some respects a microcosm of a much larger problem, and one of the many outlandish therapies targeted at the families of autistic people.

Unsurprisingly, diet is often fixated upon, with gurus claiming all manner of nutritional shifts for staving off or curing autism. Much of this is based on the implicit assumption that autism spectrum disorder is a form of food hyper-sensitivity, despite there being no evidence to buttress this conjecture and plenty against it.

One school of therapies pivot on the assumption autism is the result of toxic damage, and offer to “flush out” the harmful agents

The causative or curative agent changes with food fads. Most recently a gluten-free diet for autism has gained popular appeal. But the evidence is entirely anecdotal, and doesn’t appear to survive objective scrutiny, with a 2015 study finding no improvements in behaviour, symptoms, sleep habits or bowel function for autistic children on gluten-free, casein-free diets.

Dietary interventions are at least relatively harmless – others are not so benign. One school of therapies pivots on the assumption that autism is the result of toxic damage, and offer to “flush out” the harmful agents. 

Such “chelation therapies” have some application for heavy metal poisoning, but there is no evidence to support this modality for autism. Despite that, an estimated 7 per cent of all autistic children worldwide have been subjected to chelation therapy.

This is unpleasant as well as useless, raising the risk of needless liver and kidney damage – a fact reiterated strongly by medical professionals after the death of a five-year-old child in 2005. Others take this further still, such as former US physician Mark Geier who charged $5,000 (€4,600) per month to administer Lupron, a potent hormone disrupter used to chemically castrate sex offenders.

Others still cling to long discredited theories to peddle their nonsense, such as the assertion that autism is an auto-immune disorder, for which extensive, dangerous and ineffectual immune therapies are offered at eye-watering prices. The mantra that cannabis or cannabis oils “cures” autism is also depressingly common despite there not being an iota of evidence to support it. 

Misunderstood condition

To understand why so much sound and fury is directed to autistic people, it’s important to understand that the condition is frequently misunderstood. Autism is a somewhat nebulous term to many, but is in essence a neuro-developmental disorder, affecting social interaction and communication. It is complex and variable, manifesting in highly idiosyncratic ways, with individuals ranging from the non-commutative to highly functional.

Simplistic stories promising clear causes and ready cures are irrevocably facile and ultimately damaging

The question of what “causes” autism remains an open one, with evidence to date strongly suggesting a predominant genetic determinant. And importantly, there is no known “cure” for autism. For all their intuitive allure, simplistic stories promising clear causes and ready cures are irrevocably facile and ultimately damaging. Even so, simple and fundamentally wrong-headed mindsets persist, to our collective detriment.

Another aspect of autism that can lead to enduring confusion is the sheer scope with which it can manifest. While some forms of autism are hard to manage, it bears remembering that autism is a spectrum, and to assume extreme forms are the norm is misguided. The reality is that many who are neuro-atypical live perfectly full and happy lives.

Of course, some types can be incredibly hard to manage, with non-commutative forms being perhaps the most difficult. Sadly, even if cures aren’t invoked, the techniques promised to “unlock” nonverbal autistics are perhaps even more suspect.

Of these, facilitated communication (FC) is perhaps most notorious. In this a facilitator helps direct a patient’s arm to a screen or keyboard so that they may apparently communicate. By the late 1980s, FC had reached the apex of its popularity and wondrous stories of “unlocked” patients abounded.

Some patients even “wrote” books with their facilitators, and were hailed as savants. But the hallmarks of pseudoscience were apparent, and by 1991 more than 40 studies showed only evidence of wishful thinking and self-delusion.

Despite being long debunked, related methods still hold cruel sway over families of nonverbal autistics, in which the promise of communication is clung to despite being sadly illusory.

It would be remiss of me to ignore the elephant in the room that lingers at the fringe of any public discussion of autism: vaccination. It bears repeating at the outset that there is absolutely zero link between autism and vaccination, yet in the public consciousness these two topics have become so linked that uncoupling them is a vital exercise.

Blame for this evanescent link can be cast firmly at the feet of disgraced former physician Andrew Wakefield, who suggested in a 1998 paper that there might be a link between autism and the Measles-Mumps- Rubella (MMR) vaccine. In spite of public health authorities and scientists casting doubt on this assertion from first utterance, an inevitable panic ensued, and vaccination rates fell far below the threshold for herd-immunity.

As a direct consequence, a number of damaging and deadly outbreaks of measles occurred, including one in Dublin which claimed the lives of three children.

Unmitigated fraud

In time, the investigative work of Brian Deer discredited Wakefield. His paper retracted, Wakefield was struck off the medical register for ethics violations of an almost unfathomable nature.

While Wakefield remains a discredited scientific pariah, the lie of autism as “vaccine damage” is now so common it has been absorbed as a central myth in many of the pseudo-scientific panaceas peddled for autism. But implicit in this is an autism stigma, replete with an extremely dehumanising assumption – that autistic people are so fundamentally defective they need to be “cured” at any cost.

Some of the rhetoric involved even borders on the eugenical, such as Cease (Complete Elimination of Autistic Spectrum Expression), which promises to end autism through homeopathy. Given that the central tenets of homeopathy have been utterly debunked, this would be laughable was it not for the ominous language.

Quite understandably, many in the autism community do not appreciate being used as a horror story. Autistic Rights Together director Fiona O’Leary is one such individual. She been instrumental in exposing the Irish MMS movement and tackling the use of autistic people as props in the agenda of others.

In O’Leary’s words: “Due to continuous misinformation, we’ve seen parents convinced that autism in an acquired disease, and their children are toxic, polluted, trapped – but I believe the real issue is acceptance.”

She reserves a special level of contempt for Wakefield and followers, who “are exploiting the autistic community and using them as pawns for their reckless campaign”.

Even with his scientific reputation in tatters, Wakefield commands an impassioned audience and impressive income. His film Vaxxed played to dedicated audiences, including a supportive Donald Trump – despite every assertion made within being roundly disproven. Wakefield accuses his critics of being vested interests.

Sadly, the renaissance of the anti-vaccine movement again threatens to reduce autistic people to mere cyphers in a poisonous narrative. In such a crucible, it’s hardly surprising that autistic people and their families are especially vulnerable to exploitation. They deserve both protection from unproven and potentially dangerous “treatments”, and societal respect for their neuro-diversity.

Still, the daunting volume of misinformation on the topic, both online and off, renders even this basic obligation a herculean task, and leaves many at perpetual risk from misguided fools or abject charlatans. 

David Robert Grimes is a physicist and cancer researcher at Oxford University, as well as an Irish Times columnist. Dr Grimes was a joint winner of the 2014 John Maddox Prize for Standing up for Science. See davidrobertgrimes.com. Twitter: @drg1985

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