Supplements For Kids With Autism: Who Do You Believe?
Earlier this month, Autism Speaks touted a study claiming that “few children with autism need most of the micronutrients they are commonly given as supplements”. Their take-away was a headline shouting that supplements “lead to nutrient imbalances”. We are to be impressed because, per their math, this was “the largest study of its kind.”
In this case, size doesn’t matter.
So much went wrong here that I’m not sure where to begin. So I’ll start by saying this is one study you don’t need to believe. Here’s why:
The authors didn’t study what they concluded. Its abstract’s opening statement says: “Little is known about the effect on dietary adequacy of supplements given to children with autism spectrum disorder.”
For now, bear with me, just nevermind that this statement isn’t quite true …there have been thousands of studies, including clinical data and case reports, describing supplements in children with autism. In fact, it looks like there are some 27,500 of them, glancing at Google Scholar.
Okay nevermind. Back to the study. Its concluding statement is…
“Few children with autism (ASD) need most of the micronutrients they are commonly given as supplements.”
The authors set out to examine the “effect” of supplements on “dietary adequacy”. Not the effect of supplements on kids. They also didn’t study what these kids need… So how did they conclude they don’t need supplements that they’re given?
They didn’t evaluate the kids. They didn’t evaluate whether they needed supplements, or if supplements helped them. In fact, they didn’t assess the children’s nutritional needs at all. There is no lab data, no blood work, nothing at all to define what these kids may have actually needed for supplementation. The data set was tabulations on food and supplements the kids ate. After some sparkly statistical gyrations, this data set was compared to government Daily Reference Intakes for healthy kids. That’s it.
The authors didn’t mention that kids with autism might have different nutritional needs than their peers (as you can find perusing those 27,500 studies linked to earlier). Instead, the authors looked at “dietary adequacy”. How do they leap from here to the conclusion that “most” kids with autism don’t need supplements they’re receiving ?
In academic publishing, leaps of faith like this are normally flagged by editorial boards and hand-picked peer-reviewers. But many practicing dietitians and licensed nutritionists (myself included) are concerned that the Journal of the Academy of Nutrition and Dietetics (AND) is too close to industry to be impartial. AND’s stated mission is “improving the nation’s health and advancing the profession of dietetics through research, education and advocacy”. But some nearly 14,000 of their own dietitian members have splintered off to form Dietitians For Professional Integrity – a group demanding that AND out itself for all its corporate sponsorship, and redirect its educational resources for dietitians. AND is supported generously by Coca Cola, Monsanto, ConAgra, PepsiCo, McDonalds, General Mills, the Corn Refiners Association (high fructose corn syrup, anyone? Soda, candy, juice?) and The Dairy Council, to name a few heavy hitters.
The study was published in a journal criticized for industry bias. Remember Kraft Singles earlier this year? AND accepted money to put their “Kids Eat Right” seal of approval on this product, which dropped a well-deserved avalanche of unforgiving satire in their laps. No surprise – AND has long enjoyed sponsorship from global corporations who sell processed, over-sweet, GMO, pesticide-laden, and dairy-rich foods to kids – exactly the kinds of foods that most any kid shouldn’t be eating much of, let alone kids with autism. AND has tiptoed around the autism issue for nearly two decades, skirting training for dietitians in the use of things like supplements, gluten or casein free diets, organic foods, grain free diets, or biomedical tools for kids with autism. When it comes to spear-heading nutrition interventions for children with autism, AND has been a virtual no-show; in fact, you’d be hard pressed to pick an academic nutrition journal that is more tepid, hostile even, that this one, on cutting edge autism-nutrition research.
Shoot, I digress again. Let’s go back to the study. We care about the kids, and whether they might benefit from supplementation, right? We don’t care about oblique semantics on “dietary adequacy”. Well, nevermind. Let’s roll with this, and see how the authors define “dietary adequacy” for these children.
Oh wait – they didn’t do that either. Instead of assessing the kids to see if they were in normal nutrition status (as many children with autism are not, if you actually do the work to find out), these authors cherry-pick one study from Pediatrics to bolster their idea that (a) kids with autism eat like any other kids do and (b) they therefore have no special nutrition needs. And, this study comes from the same lead authors – they cited their own previous study. Based on that, they continued with the house-of-cards strategy that it must be okay to conclude that these kids “don’t need most the supplements” they’re given.
But, if you read the Pediatrics study closely, here’s the most perplexing part: The authors found that with autism do eat more poorly compared to typical peers, especially at ages 4-8 years. In fact, it found that ASD kids ate less vitamins A and C, less zinc, and less food than kids without autism. Kids with autism also had growth problems more often too – either underweight or overweight. Even when their own data shows a problem, the authors brushed it aside. Why the authors white-washed that out of their conclusions is a mystery. But one thing is clear: Citing their own prior study as proof that all these kids, autism or no, generally have the same eating patterns is another fail. Onward they leap to the next misstep: They assume that it’s okay to use Dietary Reference Intakes (DRIs) as a definition of “adequate” for children with autism.
As any nutrition professional knows, DRIs don’t apply to those with chronic health conditions. They are based on healthy people, and intended for use as a guideline only, for healthy people. Here is a quote from the preface of the DRI book for thiamine, riboflavin, niacin, vitamin B6, folate, vitamin B12, pantothenic acid, biotin, and choline (that’s the B vitamin group, and yes, there is a stand-alone tome just for those… it’s over 500 pages long):
“Evidence concerning the use of these nutrients for the amelioration of a disease or disability was not considered because that was beyond the project’s scope of work.”
So there you have it – The authors used an invalid “control”. They self-declared the DRIs a valid baseline or control for this group of kids, when it may not have been. According to the DRIs, you can’t use DRIs for kids with chronic conditions or disabilities as a definition of “adequate”. It’s not scientifically valid. And you can’t use a set of numbers as a control group for children; you need other children.
Many things can change what is “adequate” for kids with autism. Besides quirky food intakes, an inability to efficiently excrete toxic metals, or a simple gene mutation or two for MTHFR or vitamin D receptors, nutrient needs can be quite different for those with autism. Epigenetics, the study of how environmental factors like nutrition or toxicity direct gene expression, is a promising treatment niche for children with autism – but you would never know it reading the latest from Autism Speaks.
What is adequate for these kids? To know that, you must do much more than compare what supplements they eat to DRIs, which is all that this study did. It found supplements given to kids with autism exceed DRI levels, while others remain below DRI levels. These findings don’t tell us much of anything at all, except that children with autism should have professional medical nutrition support, so they can be safely and effectively supported with supplements if needed. It’s a shame that the authors and Autism Speaks chose a headline to shift parents away from exploring this tool, which may be beneficial when used correctly. Each child with an autism diagnosis needs individualized nutrition care from trained, experienced professionals – and contrary to what this article suggests, this help is not likely to come from dietitians who don’t stray from the AND box. Your provider should have years of experience going the extra mile on their own to train in subjects like biomedical interventions, toxicity, gut health, epigenetics and supplementation with autism diagnosis. It’s tough to go this alone as a parent, as it’s arguably the most complex intervention that a child with autism may get. If your care team isn’t savvy on this piece, check out my books, blog, or resources on the web like TACA or MAPS for more support.