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Growth data wasn’t part of the study

You may have seen the press often refer to a study from the University of Rochester that claims to debunk whether special diets help children with autism. This is one of those studies that gets legs and is off and running. Well, it got under my skin. Not only was this study on nutrition interventions for autism diagnoses poorly designed (in spite of the researchers calling it “the most controlled to date”) – turns out, I was born in the hospital where it was done! The challenge was on.

The study’s flaws are many. In fact, I couldn’t help but notice that it appeared designed to bury or defeat a beneficial effect from using a special diet measure for an autism diagnosis. The take-away from this work was essentially that “special diets don’t help children with autism” – when it should be “diets may help some kids with autism, but we can’t know which ones, unless they are screened for nutrition and GI problems.”

Don’t lose heart, and don’t believe this fail of a study. Here’s what went wrong:

It was too small – and its authors acknowledge that.  Only 14 children were in the test group.  By contrast, Dr. Andrew Wakefield got roundly criticized for noticing an effect in only 12 children, in his original Lancet piece on autism and gastrointestinal features. We can’t have it both ways: If it’s invalid to see an effect because you saw it in only 12 children, then it’s also invalid to say you saw no effect in only 14 children. The fact is, both findings deserve more study.

Children with gastrointestinal symptoms were excluded – meaning that the very children who might benefit from a nutrition intervention were purposely left out! Why? Again, lead author Susan Hyman MD acknowledges this flaw: “The study didn’t include children with significant gastrointestinal disease. It’s possible those children and other specific groups might see a benefit.” In fact, one child who was found to have celiac disease was excluded as well – an obvious candidate for improvement on a GF diet. Another was excluded for iron deficiency. Thank goodness these kids were initial candidates. How else would their parents have learned that their children had serious problems known to impair learning, growth, development, and immune function, treatable only with a nutrition intervention? It’s incredible that this study actually left out kids with the most to gain from a gluten / casein free diet!

Was soy allowed? Nobody knows – No mention is made of what protein sources replaced gluten and casein. If soy was allowed, this is a sure fail. It will confound progress, because soy protein forms the same opiate-like peptides in those who have maldigestion, can be constipating or cause bloating, and is often inflammatory. Using it as a daily protein replacement (soy milk, soy yogurt, tofu, edamame or other soy foods) will erase benefits of removing gluten and casein.

It was too short – Study duration was only four weeks – too short to notice a significant effect from removing gluten or casein. This is because it can take three to six months for antibodies to foods to drop, and several weeks for diet-sourced opiate peptides from foods to drop also. The authors cut the trial too short – but get this: The authors did notice a positive effect, but it did not reach statistical significance. With a more appropriate length trial, a statistically significant effect may well have been seen. Typically, in my clinical practice, benefits are just starting to emerge at about week three or four of a GF CF trial; I recommend a three to four month trial before drawing conclusions.

Nutrition assessment was partial and weak – A weak pre-trial nutrition assessment was done. It screened for iron status, vitamin D level, and IgE food allergy to wheat or dairy. It left out screening for IgG food reactions, bowel infections, other gut health concerns, other mineral or vitamin status,  or growth impairments. There was no post-trial nutrition assessment, and there’s no mention of standards like body mass index or growth parameters. This means we have no idea what these kids’ nutrition diagnoses actually were at the start. We also never learn if their nutrition status improved during the trial, or if the GF CF diet was even indicated for them. Many nutrition problems are documented in children with autism, including low body mass index, growth failure, low ferritin, other vitamin and mineral deficiencies, low essential fatty acids and omega 3 fatty acids, bowel infections, and so on. The authors had an opportunity to get a good work up on these kids pre and post trial, but passed on it.

Was the food truly “blinded”? – Though the authors made an effort to “blind” the food, it’s a stretch to think that food can indeed be blinded – especially for children with autism. These tend to be kids with extremely picky appetites and a fierce radar for ingredients and textures they either want, or hate. But we’re left in the dark on how successful that was for families in the study.

The study errs in its very premise – that we can test a single diet as a treatment for autism, which isn’t exactly possible. Kids with autism vary for their nutrition and GI concerns, and may need different treatment protocols for these.

It’s a fail. The study authors picked children with autism who were least likely to respond, tested them too briefly, and permitted confounders like soy, other nutrition deficits, or GI problems. This design is akin to randomly choosing a group of kids with autism with widely varying and unassessed differences in behavior or functional ability, giving all of them Ability for two weeks, and then, when results are lackluster, declaring all psychiatric medications to be of no value to children with autism.

Special diets treat nutrition problems. Autism is often accompanied by these. Call it what it is and do the job right. You can screen children with autism for nutrition problems beyond the sparse, low sensitivity tests these authors used. Work from there to help your child learn, grow, thrive, eat, sleep, and behave better. Help them to potential. Start with my E-Book Five Essential Lab Tests For Kids With Autism – this can define the workable pieces most likely to help your child, and help with how to get these tests done as cheaply as possible. Here’s to your kids’ health, wellness, and happiness!