Comment on Mayo Clinic’s story: "Autism Diet: Are claims true?"

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Comment re:  Autism diet: Are claims true? Autism families need help, not opinionated discouragement from our nations leading scientific institutions. Why do organizations such as the Mayo Clinic spend time and effort trying to maintain a status quo that offers few helpful options. I believe it is irresponsible for them to try to prevent people from trying something that might be helpful. Isn’t the purpose of science to observe, question, and test?  Since when does science defend doing nothing, and how can Mayo Clinic nutritionists NOT believe — diet helps, period! Would they recommend that a diabetic do nothing—not change their diet because it is “neither easily introduced nor easily followed long term” or “you might not see a benefit.” (as they state about autism diets).  Are these good reasons not to try something that’s proven beneficial to so many? They use misleading statements like “Unfortunately, there is no scientific evidence to conclusively support or deny the claims that these autism diet interventions can or will make a significant improvement in the functioning of the child.”  What are they looking for?  There are numerous studies indicating that nutrient deficiencies, food allergies and intolerances, and digestive problems are common among children with autism.  You can see some of these on my blog, and over two hundred scientific references in my book, Nourishing Hope. These authors tout the mainstream party line of denial by saying “there is no evidence to support or deny the claims?” (that autism diets help).  Wouldn’t their time be better spent looking at the existing and emerging research rather than waiting for one single definitive study with a 100% efficacy rate that proves or disproves it? Parents and other laypersons depend on experts with nutrition knowledge to distill the information, study the claims and find answers to support or deny claims based on their knowledge and research.  The research IS out there if one LOOKS for it. The authors state, “As a dietitian, I feel my place in this debate is to inform an interested parent or family member of the complexities of the gluten free casein free diet.”  It seems they see it as a DEBATE that needs to be argued against and that her job is to inform parents of the COMPLEXITIES. I feel very differently.  As a Certified Nutrition Consultant, I should explore what parents are experiencing in their real world applications.  My role is to investigate why autism diets are working.  My role is to notice how it helps a percentage of children.  My role is to apply my nutrition and biochemical understanding to why it helps, and how it can be utilized to help restore health.  My role is to identify any downside (which by the way, is small).  And finally, my role is to support parents, to teach them that diet DOES help, to help them learn how to implement diet, overcome obstacles, and help them do it healthfully.  My role is not to discourage them because diet may be challenging, or because one may not receive maximal results. The authors find it important to remind parents that they “may or may not see any improvement in your child’s condition.”  Why would they prepare people for disappointment?  Thousands of parents have found autism diets helpful.  Just because it is not 100% effective (what is?) they insinuate that it may not be worth trying – because they may not see improvement. In the real world, not seeing improvement is just an invitation to evolve the diet even further – because for most, giving up is not an option – and trying is always better than not. The authors appropriately suggest that parents work with a qualified, nutritionist specializing in the gluten-free/casein-free diet and autism, and to expect that you will need routine appointments to work through the challenges of introducing and following a specialized diet to avoid nutrient deficiencies and build good health. While there is no magic bullet, countless parent experiences indicate that nourishing hope is worth it – no matter what the mainstream naysayers believe. As a Nutrition Consultant who has worked with autism for more than six years, I can tell you that diet does help and it is always worth trying! Julie Matthews Certified Nutrition Consultant
Julie Matthews is a Certified Nutrition Consultant and Educator, globally respected nutrition expert, published researcher, and accomplished author. Her guidance is backed by over twenty years of clinical experience and scientific research with complex neurological and physiological needs; particularly autism, ADHD, and related disorders. Julie is the award winning author of Nourishing Hope for Autism and also the founder of BioIndividualNutrition.com. Download her free guide, 12 Nutrition Steps to Better Health, Learning, and Behavior.

2 Comments

  1. Tina, I appreciate your comment. I understand your point and am glad that you liked my explanation of the benefits of diet for autism.
    Although, I have to slightly disagree. I have heard Jenny McCarthy speak several times and have never heard her use the word “cure,” nor infer that her son has been cured from autism. In fact, she has stated on various TV interviews that she does not believe you can “cure” autism but that children can “recover” from autism. Jenny’s use of analogy is right on – think of autism like getting hit by a bus, while you can’t be “cured” you can “recover.”
    Use of the word “cure” muddies things – and is not the goal of most of my clients. Parents using biomedical and dietary interventions aren’t oriented, I feel, towards a “cure,” rather they seek and apply interventions that help their child as much as possible.
    What does cure mean? Webster’s Dictionary defines cure as: recovery or relief from a disease b: something (as a drug or treatment) that cures a disease c: a course or period of treatment d: spa 1
    3: a complete or permanent solution or remedy
    Western medicine seems to define cure as a permanent solution. Those of us in the holistic health field, myself included, feel that this is not a possible task and is against the nature of health and healing. All people have weaknesses in certain areas of their health based on genetics, lifestyle, and environmental exposures. The goal of nutrition and healing is to support the systems that are in the most need. Many of us see diseases and disorders as imbalances that can “addressed” through healthy solutions: diet, supplementation, exercise, and in some cases medication. We don’t expect that these methods will “cure” someone but that they will help balance the system, restore health, and thus provide relief from symptoms. To me, this is the goal of healthcare—to feel better and heal the system where we can. We don’t expect that this is a “permanently solution,” but something to continually work on.
    To many with autism, the goal is not a “cure” but to live a happy, healthy life, free of as much suffering as possible—and in some cases the disorder seems to be reduced to such an extent they do not meet the criteria any more. Most of us, including Jenny McCarthy, call this “recovery.”
    To me, cure is a concept made up by the medical world, not necessarily the goal of most individuals and parents. I think this distinction between cure and recovery is important so we are not throwing the baby out (the message of the benefit of dietary intervention) with the bathwater (arguing whether the effects are a permanent “cure”).
    Is a child that recovers from autism, cured or not? I contend it does not matter.
    If we wanted to find a “cure” (find a permanent solution) for anything it would be the apathy and hopelessness that pervades the autism community. Too many are unfortunate victims of a system that denies its involvement in the autism epidemic. We all know that the “system” is not helping as they could, and should. But no one deserves to have helplessness thrust upon them – and it saddens me that so many are stuck there – simply because they do not have truthful information – or access to this information.
    It is important that everyone know that hope exists for them, and that by having hope, betterment comes – in many ways, this is the nature of things.
    Julie Matthews

    Reply
  2. As a Nutritionist, you are well aware that there is a fine line between diet helping autism symptoms and “curing” them.
    Those of us on the autism spectrum who alleviate our symptoms through diet are concerned that Jenny McCarthy is claiming that the diet changes “cure” the autism. This is a dangerous distinction, we hope that those promoting diet as a symptom alleviator will highlight the fact that it is only a symptom alleviator.
    Suggesting that parents not try the diet because it MAY not work is akin to suggesting that using it will cure the syndrome.
    I like the way that you have presented the diet as something worth trying rather than something that might cure autism, as those of us on the spectrum know, there is no cure.
    Tina Brooks

    Reply

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