Have you ever found yourself at the pharmacy thinking, “now HERE’S a job anyone can do. A bit of math, a decent memory. How hard can it be?” Or looked at your prescription and thought, “you know, I’ll bet I could throw together something twice as effective in my kitchen.” Yeah, me neither; and yet some autism cures have parents doing pretty much that.
My toddler was recently diagnosed with Sensory Processing Disorder with a suggestion that we keep an eye out for Autism Spectrum Disorder. Within hours of leaving the clinic, I wandered down the rabbit hole of alternative autism cures, among which were pages by parents using the Cutler Protocol, which is based on a chelation cure proposed by Dr. Andrew Cutler in his 1999 book on Mercury poisoning. The promise is that chelating agents will remove heavy metals that Cutler claims cause all sorts of things, including mercury poisoning (which he apparently contracted from his fillings).
Never mind that a 2009 study found no increased mercury in children with autism than in their peers, those using the Cutler Protocol blame heavy metals for their children’s conditions.
The protocol consists of capsules parents fill with concoctions they make using complicated guidelines, and give to children many times a day in cycles for months or years. The capsules apparently pull the heavy metals out of their blood, and cure them, no doctor required.
Those complicated guidelines are hard enough when it comes to mixing the concotions, and harder still on the strict schedule they demand.Below are the instructions for only two of the chelators (you can see the entire, list here). There are so many ways this could go wrong, between bad math to accidents with frequency, and tedium of drugging your child at 11 times a day (see below):
DMSA: every 4 hours,including at night
ALA: every 3 hours, including at night
DMSA + ALA (together): same as ALA, every 3 hours, including at night.Dosage:
DMSA (alone or in combination with ALA): 1/8 to 1/2 mg of DMSA per pound of body weight, per dose
ALA (alone or in combination with DMSA): 1/8 to 1/2 mg of ALA per pound of body weight, per dose
So, I’m supposed to calculate the dosage myself for each item, powder it and mix it up, encapsulate it and give to my child at specific intervals around the clock. Are you kidding me? The drive to the natural foods store to get the stuff takes me past four pharmacies housing people well-trained in the way the body reacts to medicines, nutrition, minerals and vitamins.
If that weren’t enough, we also pass the clinic, with doctors and nurses who know a tad more about medicine than this former English teacher.
I am all for DIY when it comes to making my kids a sensory board, but I’ll be damned if I’m going to engage in DIY medicine (as if a few days spent reading the internet somehow trumps years of medical school and residencies).
So this is already not an option. But, I’m a fan of overkill so let’s break down why it’s not real medicine.
The thinking person’s guide to autism provides this list of questions for identifying pseudoscientific cures for autism, which I answered using Cutler’s website and his comments in online discussions (archived here).
- Does this practitioner or vendor promise miracles that no one else seems to achieve? Yep.There is no known cure for autism.
- Is the person promising the outcome also asking me for money? Sort of. When asked on a Yahoo group for his consulting fee, he says there is none (May, 2000). However, his CV lists him as a “Detox Consultant.” Every site suggests that you buy his book, and the complex guidelines make it difficult to follow without it.
- Do I find any scientific research supporting their claims, or are there only individual (often emotional) testimonials of effects? His CV shows a complete lack of peer reviewed articles on this topic. Perhaps he is simply modest. Surely his published research will pop up on Google Scholar.Again, nothing.
But that’s ok, explains Cutler when asked to cite a source. “Considering how inaccurate and limited journal articles are. . .it is often necessary to make personal observations to really figure anything out. This is SCIENCE. The system where nothing counts unless it is written in the properly blessed book or journal is RELIGION. Don’t let any “doctor” sacrifice your kid to their cult of the “medical religion” just because you have real information from a source their “high priests” haven’t blessed.” (April, 2000)
In the looking glass world of pseudoscience “cures,” science-based-medicine equals “religion,” and “high priests” are scientists performing controlled studies. I’m going to mosey on back to the rational side of the glass and wait for information to be “written in the properly blessed book or journal” before I force my child to submit to an invasive treatment regimen.
- Does the practitioner or vendor promise a blanket “cure” for unrelated disorders, such as grouping together allergies and autism; or autism and ADHD; or autism, diabetes, cancer, and allergies? Heck Yes.His book excerpt provides a list of 44 diseases caused by mercury poisoning that cover almost all body systems, Taking the Cutler Protocol is like shopping a buy one get 44 free sale. And, who can resist a sale?
- Does the practitioner or vendor have strong credentials as an expert in the therapies they’re promising, or in the field of autism? No. Back in that CV we learn Cutler’s degrees consist of a B.S. in Physics and a PhD in Chemistry–both are impressive, but none make him qualified to practice medicine or recommend medical treatment.
So, by this measure, the Cutler Protocol only cures the fat wallet you used to have before buying the supplements required to complete it and the sleep you got before waking your kid at all hours of the night.
For further reading, I suggest an article at Science Based Medicine on the fundamental problem with “autism bio med” cures like this and the misunderstanding their practitioners have regarding the nature of an autism diagnosis.
(featured image by Deek)
I love this post! I have a son with autism and SPD, and am part of a closed FB group of other autism moms in my city. Occasionally there is a woo storm (anti-vaxxers most often), but mostly the group offers support, advice and a safe place for celebrating small gains and venting. I posted the link to this article on the group and it was really well received! We all try and support each other, if the treatments do no real harm, like a GF/CF diet. However if someone is considering something like chelation, hyperbaric treatments or bleach enemas there is usually a huge amount of moms trying to talk that person out of it.
Thanks for the article!
I’m glad to hear it!
I really value my SPD support group as I wrestle with how to be the best parent I can in this situation, but I kind of wish ours was a little more like yours! The Facebook groups I’m a member of (more U.S. based) tend to be more tolerant (I’m not sure that’s quite the word I want) of pseudo-science, which frustrates me since I think that treatments without at least some decent proof of success (or at least mitigating symptoms) just don’t deserve to be held up side by side with more proven ones as if they are on equal footing. I hadn’t seen chelation therapy in my group, fortunately, but hyperbaric treatments, essential oils, and chiropractors come up often (the last two just aren’t all that dangerous, I know).
Yeah, we have members who use essential oils, craniosacral therapy, naturopathic treatments and, of course, homeopathy. Periodically I post about homeopathy, but it is pretty hard to convince someone experiencing the placebo effect that they are experiencing the placebo effect and confirmation bias.
I try not to get into to many battles, but do present the science of stuff if it seems relevant and useful.
Hi,
Thanks for this article. I agree that chelation is something that needs to be researched thoroughly and approached carefully. I am not convinced it is ever appropriate for children. I find it is very important to me to read both sides of every argument. I’m a big believer in holistic medicine, but feel it must be approached in an educated manner. I realized reading your comments though that I’m likely not your target audience or at least my holistic leanings make me a minority ?. I do have to say that as a mother of a child on the spectrum, it baffles me when people lump nutrition, like gf/cf diets, in pseudoscience. Nutrition is absolutely the farthest thing from pseudo science there is! I’m not saying everyone needs to go that direction, but to not acknowledge that highly processed foods are probably not the best idea for a population shown to have a higher than average rate of gut imbalance is, in my opinion, irresponsible. I’ll agree to disagree on the dismissal of essential oils and homeopathy and I’m assuming Chinese medicine (even though they have all been practiced for far longer than traditional medicine)…but please let’s not ever call the food and fuel we put in our own and our child’s body pseudoscience!
Since this popped up in a google search, I feel I’m allowed to comment even though I don’t agree. So many things wrong with this post, though I agree with many opinions here. First, Drs. and Pharmacists are given very little training in nutrition. They are trained in how to use drugs. It’s time for parents to refuse to accept that only a Pharmacist or Dr. can make a decision that benefits their child, especially when Drug and Insurance companies incentivize Drs. Second, it’s time to rely on more than a 2009 study on just mercury. That was a long time ago, and since vaccines, baking powder etc. contain aluminum, that is a huge consideration that you’ve left out. (See documentary Injecting Aluminum to hear expert Drs. on aluminum tell you that you’re operating with an entirely false sense of security). Next, parents using the Cutler Protocol are supposed to TEST their child for heavy metals so they have a baseline. Not all Autism is cause by heavy metals, but if your child TESTS positive for heavy metals, you aren’t in left field if you want to do something about it. Even if it’s hard, and repetitive. Good parents don’t mind doing hard, inconvenient things to help their children, especially when other methods and multiple Drs. have failed. Next, ALA, DMSA, etc. aren’t DRUGS, so stop pretending a parent using this protocol is “drugging” their kid multiple times per day. As far as peer reviewed science regarding these ingredients, they aren’t drugs. You can’t patent natural things like vitamins, minerals, esssential oils, DMSA or ALA, so you don’t sound very impressive talking about how there isn’t any peer reviewed material. If you can’t patent something and sell it, there is no incentive to fund clinical trials. Yeesh. Regarding the link between metal toxicity and allergies, ADHD, etc., you list many autoimmune diseases that are in fact caused by heavy metals and are widely known to do so. Loads of this stuff is listed right on vaccine inserts. Dr. Cutler may have profited from his book, but he also commented freely on facebook to any parent who asked it of him. He is now dead and people are still using his protocol, and the supplements, so Amazon can probably thank him for all the supplement sales, that he didn’t profit from. So last, I’ll say, that for some Autism, depending on what caused it, there is no cure; however, there is a cure for metal poisoning, and when you cure that, the symptoms it was causing are bound to go away. Metal, loves to store itself in fatty tissue, like your brain. Vaccines contain aluminum and propylene glycol, which opens the blood brain barrier. We know this because propylene glycol is used in cancer drugs to – OPEN THE BLOOD BRAIN BARRIER. If you think you can inject yourself with those two items and not end up with metal in your brain, well….you have too much metal in your brain.