The Rochester Autism-Diet Study: What Went Wrong, What You Should Know by Judy Converse MPH RD LD • All About Autism Series 2011

This post is generously submitted for the 2011 All About Autism Series ~ by  Judy Converse, MPH RD LD:

You’ve probably 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 – hmmm, for some reason – really gets legs and is off and running. Well, it got under my skin, not only because the study was poorly designed (in spite of the researchers calling it “the most controlled to date” on nutrition interventions for children with autism) but, as it turns out, I was born in the hospital where it was done.

The most trotted-out study in the US press on this topic, generated from the very same halls where I was born? That struck me as an interesting juxtaposition.

I contacted Lenny Schafer, editor of the Schafer Autism Report, on the University of Rochester’s attempt to look at effects of GF CF diet for autism. I wanted to throw the light of day on the study’s flaws – so many, in fact, it was doomed from the start to bury or defeat a beneficial effect. The tragedy is that the meta-message has become “diets don’t help children with autism” when it should be “diets may help some, but we aren’t sure who, unless we screen these children more vigorously for nutrition and GI problems.” Here’s the run down on what went wrong:

- This is a too-small study, and its authors acknowledge that. It contained only 14 children 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 only saw it in 12 children, then it is also invalid to say you saw no effect in only 14 children. The fact is, both findings deserve more study.

Growth data wasn't part of the study

- Children with autism who had any gastrointestinal symptoms were excluded. This means that the very children who might benefit from a nutrition intervention were purposely left out. Why? Again, 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?

- No mention is made of what protein sources replaced gluten and casein. If soy was allowed, this will confound progress, because soy protein forms the same opiate-like peptides in those who have maldigestion, and is often antigenic. Using it as a daily protein replacement (soy milk, soy yogurt, tofu, edamame or other soy foods) will mask any benefit of removing gluten and casein.

- The study duration was too short duration to notice a significant effect. In fact, it did notice a positive effect, but it did not reach statistical significance. Would it, with a more appropriate length trial? Children with autism have shown two problems with food proteins (including gluten and casein): One, they have an antigenic response to it. This can be in the form of an allergy (IgE) or sensitivity (IgG) reaction. Two, they have inadequate digestion of these proteins, and will show either an enzyme deficit, or an excess of poorly digested peptides from food proteins in urine. In either scenario, it typically takes several weeks for these aberrant food reactions to diminish, and for peptides to be excreted. A four week trial is inadequate to demonstrate significant change, and this is what parents usually report in my practice.

- A weak pre-trial nutrition assessment was done, which screened for iron status, vitamin D level, and IgE food allergy to wheat or dairy. 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, if their nutrition status improved, or if the GF CF diet was even indicated for them. Many nutritional co-morbidities are documented in children with autism, including low body mass index, low ferritin (this will drop and impair functional ability, behavior, and sleep before frank anemia emerges), other vitamin and mineral deficiencies, lack of essential fatty acids and omega 3 fatty acids, and so on. We also don’t know if bowel infections were an issue in these children, a piece which can impair digestion, absorption, and stooling.

- 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.

The study errs in its very premise, that we can test a single diet as a treatment for autism. The study authors then picked children with autism who may have been least likely to respond, tested them too briefly, and left in unknowns about foods allowed and other nutrition or GI problems. The design is akin to randomly choosing a group of kids with autism, doing a minimal developmental assessment, then giving all of them Abilify; then, declaring all psychiatric medications to be of no value to children with autism, if the Abilify didn’t show a significantly helpful trend. Diets treat nutrition problems or metabolic disorders; if autism is frequently accompanied by these, instead of being a purely psychiatric condition, let’s call it what it is and do the job right. We can screen children with autism for nutrition problems beyond the sparse, low sensitivity tests these authors used. Based on the hundreds of nutrition assessments I have done on children with autism over the last decade, it’s clear that this is a population at larger-than-typical nutritional risk. Leaving these problems untreated, or presuming a single nutrition strategy can suit them all, is the wrong take home message.

Judy Converse is a licensed registered dietitian with a master’s degree in public health (nutrition major) and a bachelor of science degree in human nutrition and foods. She’s written books, testified before a Congressional subcommittee and her state legislature for safer vaccines, done lots of lecturing, blogging, article and chapter writing, and maintains her pediatric nutrition practice, Nutrition Care For Children LLC.  She’s also a mom of a child who nearly paid with his life in 1996, for following the recommended vaccination schedule. That searing experience redirected Judy’s life, changed forever her perspective on public health policy and her university degree training, and led her to publish her first book in 2002, a memoir of her family’s experience. She has devoted her work since to helping children with myriad special needs with nutrition supports, bringing these promising and effective interventions to an underserved population. Her work with hundreds of children has culminated in two more books with Penguin/Perigee - including Special Needs Kids Go Pharm-Free – to give families the tools and information she never had as a new mom. Judy lives in Colorado with her husband and best friend Chris, her son Ben, and two cats.

Both Judy and I hope you have found this information enlightening….what’s your take?

Week 2 Giveaway

4 Responses to The Rochester Autism-Diet Study: What Went Wrong, What You Should Know by Judy Converse MPH RD LD • All About Autism Series 2011

  1. Nutrition is a tricky thing. I think what we eat definitely effects how our bodies work. Everyone’s body works a bit differently as I am learning now with my Hashimoto’s.

  2. Gina says:

    Thanks for passing this information along. We too are still finding nutrition to be a difficult avenue to negotiate, but we’re working on it. Thanks Judy!

  3. Jean Nicol says:

    Judy, have you heard of The Eating Game? (www.theeatinggame.ca) It is making a difference in the lives of many children who have eating challenges. They are aving fun planning their own healthy meals every day. They are eating these meals! It was invented for a child with autism but helping many picky or poor eaters who are not autistic.

  4. I’ve seen the press refer to the study from the University of Rochester. Its sad that children with autism who had any gastrointestinal symptoms were excluded.It wasn’t fare.

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