By Katie Wright
It is so disheartening that the Autism Treatment Network’s dietary intervention research program has accomplished so little over the course of 5 years. In that time hundreds of thousands of dollars have been wasted in badly designed, poor quality research studies.
Not 1 child has been helped by ATN’s dietary research program and no breakthroughs of any kind have been achieved.
Under the leadership of Dr. Susan Hyman of Rochester NY, ATN’s dietary intervention research has been based on outmoded science. Remember the FDA’s touted nutritional guidelines of the 80s and 90s? Remember the “Food Pyramid”? Remember how the pyramid was about 25% bread and made all of us fat? Well, Hyman studies the “Food Pyramid” of autism dietary intervention research, courtesy of your tax dollars and mine.
Dr. Susan Hyman conducted the same dietary intervention research studies in 2001, 2003, 2009 and again in 2011. All these studies use the same bad design, the same dated recipes, the same selection bias errors and produce the same useless results.
2003 CAM (Hyman labels this complementary, alternative medicine) GF/CF study -- result was no useful insight, no helpful recommendations. Conclusion: more research needed. You will see a theme here…
2005 CAM dietary intervention study, conclusion: no useful insight, more research needed
2005 CAM dietary intervention study, conclusion: basically nothing works, more research needed.
2007 ASD kids might have taste impairment (how about a gastrointestinal impairment? Lets study that!), more research needed.
2008 Doctors need to develop “communications strategies” for dealing w/ CAM parents who employ dietary intervention methods. Somewhat like how parents need “communications strategies” for dealing with troubled teens.
2008 CAM “clinical providers need to understand the efficacy, and lack there of, of CAM.” More research and “communication strategies” needed here as well.
2011 GF/CF diet studied -- no effect -- more research needed.
OK, from 2003 to 20011 Hyman has conducted 7 studies on ASD dietary interventions. None of Hyman’s studies have produced any original insights or discoveries. Later you will read about innovative dietary intervention research completed for a fraction of Hyman’s smallest budget. Groundbreaking emerging research has produced incredible insight as well as extraordinary here-and-now opportunities to help ASD kids in poor health.
It is especially disappointing that Dr. Hyman’s research is devoid of input from an ASD specialist nutritionist, an ASD parent professional or even knowledge of post-2003 dietary interventions. Dr. Hyman fired renowned author, parent and nutrition expert Susan Seruossi in 2009. Seroussi had lobbied for longer trials and the removal of processed food and artificial flavorings and colorings from the study.
Hyman’s GF/CF diet has allowed artificial colors and ingredients, as well as rice and potatoes. Artificial additives/colorings can cause ADHD (present in so many ASD kids). Even the FDA agrees! Not one parent I know who uses GF/CF allows garbage, processed food in their child’s diet. Although potatoes are not technically gluten they have a powerful opiate affect on this subset of ASD kids and lead to ever-stronger cravings for more carbs. Once again, these foods are usually not part of the GF/CF diet.
Hyman does not provide the kids with low oxalate food. This is so important. If you have a hyperactive child the GF/CF diet will be useless if the child is regularly eating high oxalate food. Certain types of nuts, fruits and vegetables have extremely high oxalate levels and will only decrease a child’s ability to focus and sit still. Food high in phenols, like bananas and red grapes, can also lead to hyperactivity. High phenol foods frequently trigger allergic responses in the form of eczema and diarrhea. Old GF/CF diets allowed soy. However soy is a highly processed food and we now know that many ASD kids develop allergy-like symptoms as a result. Coconut milk, now found in most groceries stores, is a far better milk substitute. I could go on and on about why Hyman’s CF/CF diet never gets positive results, but you get the picture.
Most importantly Hyman excludes kids with GI disease and immune dysfunction from her studies. They are THE population who are most likely to benefit from an appropriate intervention dietary intervention!
Imagine doing a verbal intervention study of ProQuoLo on a group of HF to LF ASD kids. This program allows nonverbal kids to have a voice and make choices and requests. The study would produce amazing results if confined to nonverbal kids, but imagine if the study enrolled all types of ASD kids. The outcome would be null. At least half of the kids studied already have speech. Such an intervention would be useless and annoying to them. The positive effect on the subset of severely affected nonverbal kids would be totally lost due to the study design. That is exactly how Hyman’s dietary research work is conducted!
No one is arguing that all ASD children need to be on a special diet. A big % of ASD kids are healthy and do not have GI or immune problems. For these ASD kids the GF/CF diet would be an intrusive, unnecessary intervention. But this is the population Hyman studies! We need to study the specific subsets with GI and immune problems who most likely have nutritional problems and will benefit from a dietary intervention and vitamin supplementation.
Over the past 3 years well-designed emerging ASD research on diet and health has yielded exciting results. Unlike older dietary intervention studies, new nutritional ASD work is scientifically up to date and well designed. Current dietary intervention research studies urinary peptides, gut bacteria, diet and seizures as well as vitamin supplementation. This research, conducted by innovative, open-minded scientists, has really moved the science forward.
2007, Katzen-Luchenta, “the nutrients implicated in lifelong health include iron, zinc, magnesium, selenium… and essential fatty acids…these nutrients lower the risk of neural tube defects, autism and dyslexia. Today’s foods are often processed beyond the cell’s recognition.” * Get rid of processed food! Supplementing with magnesium and omega 3 is so helpful.
2009 Pardo- Gavea, Solis, Anez, “Immunogenic Aspects of Autism.” “Hypersensitivity to specific groups of food such as casein and glueten has become clear.” *key words “certain groups.”
2009 Reichelt, Knivsberg, “The possibility and probability of a gut-to-brain connection in autism.” Excessive levels of urine peptides are found in kids with autism. Their research “shows highly significant decreases (of urinary peptides) after introducing a GF/CF diet with a duration of more than a year. We refer to previously published studies showing (children) improving on this diet who were followed for 4 years. The literature shows abundant data pointing to the gut brain connection.” Hyman’s research studies only last a matter of months.
2010 Masino et al. “Ketogenic diet and epilepsy.” Epilepsy is common among ASD kids. Repeated seizures are frequently treated with powerful, sometimes debilitating medications. Combating seizures via a ketogenic diet is safe and often successful. Positive “therapeutic implications (w/ ketogenic diet) extend to acute and chronic neurological disorders as diverse as brain injury, inflammatory pain and autism…” *
2010 Whitely et al. “GF/CF dietary intervention for children with ASD.” “Our results show that dietary intervention may positively affect developmental outcomes for some children diagnosed with ASD.”
2011 Adams, et al, “Gastrointestinal flora and GI status in children w/ ASD.” “Children with severe autism are more likely to have GI problems. ... Children with autism have higher levels of good bacteria and lower levels of good bacteria." * Obviously appropriate dietary changes can promote a better good/ bad bacteria ratio. This is why phenols and high oxalate food should not be part of any GF/CF diet.
2011 Kalunza-Czaplinska, “vitamin supplementation reduces level of homocysteine in urine of ASD children.” “Our findings may lead to the recommendation of vitamins B6, B12 and folic acid supplementation in the diets of children w/ ASD.”
2011 Kalunza-Czaplinska, “B vitamin supplementation reduces urinary dicarboxylic acids in ASD children.” “Urinary dicarboxylic acids are an important source of information about metabolism and potential problems especially connected with energy production, intestinal dybiosis, and nutritional individuality in autistic children.” B2, B6 and a magnesium supplement reduces the level of dicarboxylic acid in children with autism.
2011 Williams, et al, “Impaired Carb. Digestion and transport and mucosal dysbiosis in the intestines of ASD children with autism.” “Impairment of primary pathway for carbohydrate digestion and transport in enterocytesintestinal bacteria revealed compositional dysbiosis manifest.” *Carbs cause dysbiosis in a subset of ASD kids!
OK, all these studies are basically saying that many, many, many ASD kids have GI problems that can be mediated with appropriate dietary interventions. ASD GI problems are closely related to health status and ASD severity. There is abundant evidence that many ASD kids cannot properly digest carbohydrates and benefit from dietary changes and vitamin supplementation. Why isn’t ATN doing something to help these children? Why is ATN, instead, investing over and over again in useless over-generalized dietary intervention research?
I am not writing this to bash ATN, only to create awareness, within ATN and elsewhere, of the exciting emerging dietary intervention science. I sent a draft of this post to Dr. Dan Coury, president of the Autism Treatment Network. I asked Dr. Coury if he had any comments or corrections. He never responded. If readers want to share dietary research studies that I missed, please do. So the next time any parent goes to an ATN site and they say, “there is no science behind dietary interventions,” you might want to update their information.
Some of my favorite sources:
Katie Wright is a Contributing Editor to Age of Autism.