Storytelling vs. science

Things are not always what they seem.
Things are not always what they seem.

Several organizations exploit vulnerable parents by claiming that they can “cure” their children’s autism through various approaches.

As Left Brain, Right Brain observes, these “autism cure” movements persist because of the power of storytelling:

“Nothing sells unproven “treatments” like testimonials. For autism it has been true since the days of chelation and even before that. Tell people that your “treatment” cures autism and you have testimonials to show it and you can just about guarantee sales.”

As we all know, anecdotes aren’t scientific evidence, but they do appeal to us on an emotional level. Unfortunately, one woman’s recent experience has starkly illustrated just how untrustworthy such stories actually are.

Camile Saulnier (a pseudonym) was recently given a book by Kerri Rivera called “Healing the Symptoms known as Autism”, which prescribed a “Treatment” for curing autism:

“I began looking into the background of CD/MMS and I was extremely concerned to find that MMS (Sodium Chlorite + Citric Acid = Chlorine Dioxide) aka. ‘CD’ was and is being hailed and marketed as a cure for almost every ailment and disease known to mankind, this includes Cancer, Malaria, Aids and Ebola.

I found the man behind MMS to be one Jim Humble, the Arch-Bishop of a rather cult like church named the “Genesis II Church”. Suffice to say I was very worried indeed, I searched further and found that Kerri Rivera the author of the book “Healing the Symptoms known as Autism” is a Bishop within this church.

I voiced my concerns with my friend who was following the Protocol, but she seemed to be un-phased by my doubts. She directed me to the facebook group CDAutism, where she said I will find proof of the recovery stories and thousands of parents giving testimony to the marvelous gains achieved by using the CD Protocol.”

Saulnier was justifiably concerned and spent some time reading the group’s posts, learning that the linchpin of the group’s claims was the collection of testimonials of parents of “recovered” autistic children. Saulnier was skeptical about the reliability of these testimonials, as they were all posted by Kerri Rivera, and so devised a little test to see how Rivera determined what “recovery” was and whether it was the CD treatment that caused “recovery.”

“I had an idea to see for myself, I needed to be sure 100% that everything I was seeing and reading was real before I could even consider using this protocol. I am afraid my worst fears were not only imagined, they are real.

I made a recovery story for my child, based on so many others which I had read, I felt bad doing it as I do not like to pretend but it was for the sole purpose of finding a greater truth.”

Saulnier’s false testimonial was immediately and enthusiastically posted by Kerri Rivera on the group’s website, and the banner proclaiming the number of children “cured” of autism was promptly updated to reflect this false cure. You can read the details of Saulnier’s correspondance with Rivera here.

Now, I’m not at all comfortable with Saulnier’s approach. I don’t believe that it’s ethical to lie. But having said that, it is a fascinating glimpse into the credulity of this segment of the alt-med community. Can you imagine how this would have played out in the science-based medical community? What level of scrutiny would such a story have been subjected to by physicians and medical researchers before they accepted it as true?

Several readers of this blog are persons on the autism spectrum and have contributed their perspectives in discussions on vaccination and autism. I’d particularly love to hear their thoughts on this issue.

6 thoughts on “Storytelling vs. science

  1. JerryA January 15, 2015 / 8:34 am

    Is this “storytelling” or “slick marketing”? Sometimes it is hard to tell the difference, especially when the alt-med purveyors are making a good living off of the so-called cures. Much of alt-med is cheap to produce but quite expensive to buy. Desperate parents will spend money on what is pushed as a cure. After years of expensive medical and psychiatric work, alt-med may seem cheaper, but the mark-up on untrained salesmanship and “natural” cures is a lot more by percentage. What is truly telling is that none of the sellers of these so-called cures will allow a double-blind clinical trial to prove beyond a doubt that there is an improvement in the patients, or will accept the negative results of such a trial. I’m not from Missouri, but I know that if you won’t “show me”, it’s snake oil, not medicine.
    As the step-parent of a young adult on the spectrum, I know the frustration and desperation to try to get a diagnosis that fits the patient, and to try to get help (in school and in life). I know other parents who believe with all of their hearts that going to a gluten-free diet, or taking megadoses of vitamins, or going to a certain alt-med purveyor will be the cure for their kid. Sometimes, that belief is self-reinforcing, even when as an outsider I don’t see any change at all in their kid from this latest miracle cure. It’s storytelling for the parents, a desperate need to see improvement, and marketing for the sellers of these ‘cures’. In the end, the only thing I have found that works is patience, repetition of teaching, and loving my kid. I wish I were better at it. But a cure for autism? No way.

  2. Paul Andreassen January 16, 2015 / 12:08 pm

    In your article you say “Now, I’m not at all comfortable with Saulnier’s approach. I don’t believe that it’s ethical to lie.” This is a false dichotomy that places the entire spectrum of honesty into two mutually exclusive categories – being truthful or lying. If I convince a deranged person to put down their weapon by convincing them that I have a bigger weapon, am I unethical.
    In your profile, you describe yourself as a martial artist. Is it unethical to “feint”?

  3. Anonymous January 16, 2015 / 6:02 pm

    An individual’s story is nothing more than their experience, not a scientifically validated recommendation for anything. It should only ever be taken as a reason to investigate further. These idiots who want the impossible – a “cure” for something that is just another, normal model of human brainstem – should stop this.

  4. sothisisholland January 16, 2015 / 7:05 pm

    It is scary how people can prey upon others using the internet. I once found a website that was selling kits that cost about $100 to test hair for…..metal, I believe? I couldn’t believe it. How many people tested their kids hair using that kit they probably gave their credit card info for….and then promptly accepted their child had “heavy metal poisoning”? Really, something should be done about it. Too many other parents aren’t talking and too many other people are validating this nonsense due to “parental right”.

    Sadly, parents like me are targets of this. I am so glad every day I have never bought into it. And I was pregnant in the midst of H1N1. I’ve never subjected my daughter to these “cures” and never will.

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