Oct 07 2016

CAM Harming Children with Autism

snake-oil1Children with autism are an especially vulnerable population. Just being a child makes you vulnerable, especially when you have any medical condition. You are in the hands of your parents, the health care system, and the state to best look after your needs.

Unfortunately, we frequently see stories in which all three have failed to look after the needs of children (sick or not).

Another such story has surfaced: the BBC reports about a four-year old boy, recently diagnosed with autism, whose parents sought help from a naturopath. This fake doctor prescribed a dozen supplements to the boy (because that’s what they do), apparently telling the parents this would help with their son’s autism. Instead, the boy became extremely ill and would likely have died without critical intervention.

Specifically, he was given a toxic dose of vitamin D (yes, there are toxic doses of vitamins), which caused him to have dangerously high calcium levels. He developed vomiting, extreme thirst, and lost 6.5 pounds in 3 weeks. Fortunately he was treated and has recovered.

The parents, of course, fell terrible. Some might try to portray the parents as being at fault here, but I think they are mostly victims. They were given a serious diagnosis for their young child, one without a cure. I will say at this point that many parents of children with autism say that their children are just different, they love them the way they are, and it is misguided to try to “cure” them. I don’t want to get into that discussion, except to say there is some legitimacy to that point of view but it’s complicated.

Certainly some children with autism, depending on where they are on the spectrum, will face serious challenges in life and may need special services. It is certainly understandable that parents, receiving this diagnosis and grappling with the implications, would feel that it is their responsibility to do everything they can for their child, to explore every option and make sure they are giving them every opportunity to develop to the peak of their potential.

I don’t think you can blame parents for seeking options for their children. While they do carry the responsibility for making well-informed and reasonable decisions for their children, they are also, and perhaps mainly, victims here as well. In seeking options they may be faced with a health care practitioner who superficially looks legitimate and is licensed by the state.

It is not unreasonable for the average citizen to conclude that a profession licensed by the state is likely trustworthy. This, of course, is where the state has completely failed its citizens.

Naturopaths, to put it bluntly, are fake doctors. They are fake because they do not have a professional standard of care that is evidence-based and transparent. They have no standard of care – literally anything goes. What they have is a very loose philosophy with a vague appeal to nature fallacy. That’s it. They use an eclectic combination of disproven, fanciful, and outright pseudoscientific interventions. They may also give some basic nutrition advice, but even there they cannot be trusted because they have no standard of evidence.

I have seen patients receiving dozens of supplements. The most I personally encountered was 60 different supplements from a naturopath, who was also advising the patient to restrict their diet, eliminating types of food they believed were causing their disease. Meanwhile, they completely missed the real diagnosis.

Naturopathic training does not prepare them to be primary care providers or competent diagnosticians, and the interventions they use are mostly nonsense.

This one case is not an outlier – it is typical.

So, the state failed this child and their parents by allowing a pseudoscientist to practice and pretend to be a doctor. The naturopathic profession and this individual naturopath failed the patient and his parents by not having a proper standard and prescribing dangerous quackery. The parents failed by not being sufficiently skeptical, but they really shouldn’t have to be just to avoid being scammed by a fake health care provider sanctioned by the state.

Unfortunately, children with autism are an especially vulnerable population who are subjected to a host of dubious and often harmful alternative interventions. Extreme supplements or dietary changes are one example. They are also given bleach enemas, dangerous chelation therapy, and chemical castration. They are left vulnerable by not being vaccinated.

There is a world of quackery targeting children with autism and their well-meaning and desperate but misguided parents.

The BBC article quotes Jane Harris, director of external affairs at the National Autistic Society, who says this case demonstrates how:

“desperately difficult life can get for families affected by autism especially just before and after receiving diagnoses”.

Her solution?

“This awful case shows we need more professionals in place to give families accurate advice and talk to them about what really helps and how to find the right support.”

Absolutely – the medical profession needs to be more aware of what is happening, they need to educate their patients and parents, and they need to be a better watchdog on quackery and advocate for high standard across all of health care. Too often professionals are “shruggies” who think there is no harm to some useless “touchy feely” but benign interventions. They are wrong.

But that is not the real fix. Education is great but we clearly need better regulation. The state should not licence professions without a system in place to ensure external validity and transparency. They should not licence quacks and then let them regulate themselves.

The primary failure here is one of regulation. The only real solution is to muster the political will for the state to do their proper job. That political will will come when the medical profession gets properly outraged and does their job, when consumer protection groups realize they are failing when it comes to health care, and perhaps when more cases like this are openly discussed and the public is made aware that they are being sold a bill of goods when it comes to alternative medicine.

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