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Table of Contents   Title Page Copyright Page Introduction   ONE - Engaging Your Providers TWO - Nutrition Therapy 101 THREE - Making Sense of Lab Tests FOUR - Best of All Worlds Special Diet FIVE - Supplements SIX - Shop, Cook, Eat   RESOURCES AND FURTHER READING INDEX ABOUT THE AUTHOR A PERIGEE BOOK Published by the Penguin Group Penguin Group (USA) Inc. 375 Hudson Street, New York, New York 10014, USA Penguin Group (Canada), 90 Eglinton Avenue East, Suite 700, Toronto, Ontario M4P 2Y3, Canada (a division of Pearson Penguin Canada Inc.) • Penguin Books Ltd., 80 Strand, London WC2R 0RL, England • Penguin Group Ireland, 25 St. Stephen's Green, Dublin 2, Ireland (a division of Penguin Books Ltd.) • Penguin Group (Australia), 250 Camberwell Road, Camberwell, Victoria 3124, Australia (a division of Pearson Australia Group Pty. Ltd.) • Penguin Books India Pvt. Ltd., 11 Community Centre, Panchsheel Park, New Delhi--110 017, India • Penguin Group (NZ), 67 Apollo Drive, Rosedale, North Shore 0632, New Zealand (a division of Pearson New Zealand Ltd.) • Penguin Books (South Africa) (Pty.) Ltd., 24 Sturdee Avenue, Rosebank, Johannesburg 2196, South Africa • Penguin Books Ltd., Registered Offices: 80 Strand, London WC2R 0RL, England While the author has made every effort to provide accurate telephone numbers and Internet addresses at the time of publication, neither the publisher nor the author assumes any responsibility for errors, or for changes that occur after publication. Further, the publisher does not have any control over and does not assume any responsibility for author or third-party websites or their content. Copyright © 2009 by Judy Converse All rights reserved. No part of this book may be reproduced, scanned, or distributed in any printed or electronic form without permission. Please do not participate in or encourage piracy of copyrighted materials in violation of the author's rights. Purchase only authorized editions. PERIGEE is a registered trademark of Penguin Group (USA) Inc. The "P" design is a trademark belonging to Penguin Group (USA) Inc. Library of Congress Cataloging-in-Publication Data Converse, Judy. Special-needs kids eat right : strategies to help kids on the autism spectrum focus, learn, and thrive / Judy Converse. p. cm. Includes index. eISBN : 978-1-101-02467-6 1. Autistic children--Nutrition--Popular works. I. Title. RJ506.A9C.92'85882--dc22 2008041405     PUBLISHER'S NOTE: Neither the publisher nor the author is engaged in rendering professional advice or services to the individual reader. The ideas, procedures, and suggestions contained in this book are not intended as a substitute for consulting with your physician. All matters regarding your health require medical supervision. Neither the author nor the publisher shall be liable or responsible for any loss or damage allegedly arising from any information or suggestion in this book. The recipes contained in this book are to be followed exactly as written. The publisher is not responsible for your specific health or allergy needs that may require medical supervision. The publisher is not responsible for any adverse reactions to the recipes contained in this book. Introduction A Nutritionist on the Front Lines I 'm a nutritionist. That's a fuzzy term that gets thrown around a lot by different health care providers of both strong and weak training and experience in it. What it means in my case is that I am a licensed registered dietitian with graduate and undergraduate degrees in nutrition from two universities. I completed 900 hours of supervised training in acute care settings (hospitals), outpatient clinics, and community public health programs such as WIC (the Supplemental Food Program for Women, Infants, and Children). It also means that per my registration and licensure boards, I must maintain 75 hours of approved continuing education hours every five years, or lose both credentials. No slacking off. I completed my graduate training in 1988, my registration status in 1989, and became licensed in 2001 (which was when my state began licensing nutrition professionals). As fate would have it, I was also drawn into the Defeat Autism Now (DAN) community in 1998 and began provider training as soon as it was available. Soon after, I started something I never ever aspired to do, thought of doing, or wanted to do: I began a private practice, for children. This chose me more than I chose it. My own child, then two, had experienced struggles in infancy with feeding, illness, and developmental concerns that I had never heard of in all my training. I was astounded by how little attention our pediatric providers paid to the role of nutrition in his care, how uncurious they were about this piece, and how devoid of information they were about it. Even though I had already encountered many doctors in my training and my own health care who had not studied nutrition, it had never occurred to me that, of all disciplines, the pediatrician would be so disenfranchised from it. After all, if babies can't eat, or can't absorb their feedings normally, they can't sleep, grow, explore, learn, or develop typically. There is nothing more fundamental or essential to a baby's health than nutrition. That was when my training really kicked into gear. I worked hard to right the challenges in my own house with infant and toddler feeding, allergy, growth, development, sleep, and behavior. This was in 1996. Not much of an Internet then. I lived in a coastal New England village with minimal library resources. Between cracking old texts and visiting the library at the Marine Biological Laboratory in Woods Hole, which either had or could order some of the scientific journals I needed, I began piecing answers together that worked well for my own child. As I did this, parents began approaching me for the same help. Of course, I wasn't the only mom in this boat. It simply floored me that, for families like mine, there was almost nowhere to turn for professional guidance on how nutrition matters for children. That is how Nutrition Care for Children came into being, a private practice I created to fill this gap. It's still a tiny practice, but I am contacted now by families nationwide. The irony is that many parents tell me right up front that their child has no nutrition problems. Besides, they often add, the pediatrician has never mentioned any problem, and there are no bowel symptoms. I have never met a child with sensory processing disorder, autism, Asperger's, or ADHD with no nutrition problems, so I let parents discover with me what we can put right for their child, and then we watch the improvements unfurl. If they don't unfurl, then I hope they stay curious with me, and I make referrals to providers who can look at other layers. I would be the first person to tell a family there is no point to special nutrition measures for a child struggling with developmental, behavioral, growth, learning, or allergy problems. But so far, I haven't encountered a situation where nutrition care didn't help. We always find at least one lever worth pulling, one nutritional adjustment, and parents are glad to witness their child improve in ways large and small. Whether your child has as grave a situation as autism, or a daunting but less challenging issue such as sensory processing disorder or nonverbal learning disability, nutrition tools can be effective allies. The nutrition care process is essentially the same for the whole gamut of behavioral, neurological, and developmental diagnoses the CDC says now affects one in six children in the United States today. Because we are talking about child nutrition assessment and care, and not psychosocial or educational evaluation tools, there is a reliable standard in place for this that has existed for decades. Blending this with what have become known as "biomedical" treatment tools makes for a powerful method of enhancing health and learning for these children, no matter what their developmental and learning diagnoses may be. For parents of children with other special needs such as cystic fibrosis, diabetes, Crohn's disease, cerebral palsy, seizure disorders, or global developmental delay, this book might prove a useful read, too. Nutrition care for kids with these diagnoses is easier to access in today's medical landscape than it is for children with autism, so you may feel you have that base well covered. But there may be useful tidbits on the pages that follow--bits of information that might be overlooked by the staff at a major medical center, such as: Children with diabetes may show improvement in blood sugar control when using gluten-free diets; children with cystic fibrosis may have undetected inflammation from foods that further inhibits growth and gain; seizure disorders may improve with aggressive antifungal therapy or supplemental magnesium and pyridoxine. All children benefit from good nutrition support, but not all children get it. Most mainstream MD providers don't use it. All too often, it is not the focus of their training or a key aspect of their treatment methods. Parents of children with autism face a bigger challenge in many ways, because the idea that nutrition supports apply to this condition is still bucked by many a doctor. Finding someone to work with your child on this can be difficult. If there is a silver lining to the autism epidemic, it may be that we are hearing the word "recovery" in the same breath as "autism." As hopeful as that is, many in the autism community bristle at it. While we talk about stroke recovery, cancer cure, diabetes cure, successful treatment for depression, or recovery from traumatic brain injuries, many stumble with "autism recovery," "cure autism," or even "autism is treatable." Some construe the very idea of recovery as a judgment on people with autism who don't want to change their unique talents or personalities. To the contrary, my years in practice have convinced me that we should shed the view that autism is an inflexible, static affliction. It deserves the same determination for improvement that we fling at challenges such as diabetes, cancer, AIDS, or intractable depression. After years of watching children with autism spectrum or sensory challenges find joyful expression of their true personalities, or move toward higher functioning because of good nutrition care and biomedical tools, it is hard for me to remember that most MD providers and many parents are still out of this loop. Whatever your stance on this point, it works to focus on a goal everyone has: good health, contentment, and reaching one's potential, no matter what fate has thrown in your path. If a genetic predisposition has brought autism, cancer, stroke, diabetes, or Parkinson's disease into your life, or whether you view these conditions as entirely triggered by external factors, you are still here to live to the fullest and feel well. This is where therapeutic nutrition strategies really shine. Withholding these strategies from any child is illogical, and it's downright unethical if the child has signs and symptoms relating to nutrition or gastrointestinal (GI) problems. As you will soon discover while you read this book, children with autism diagnoses, sensory integration disorder, or challenges with attention, focus, learning, mood, or behavior often have plenty of nutrition and GI problems. The science and practice that can repair or lessen nutrition and GI problems in children is not new, not novel, not fringy, and not alternative. The new part is looking at these children through this different lens. Of course children function better when problems found with this lens are fixed. Regardless of where you stand on the complex questions of why the diagnosis rates are exploding, or what causes autism, I hope we can agree that good nutrition is essential for all children--something we owe them and are capable of giving them, and something that can benefit them tremendously in their development and quality of life. So, dive in. This book gives parents practical, straightforward information on approaching and using special diets for children with challenges such as autism, sensory integration disorder, attention problems, and more. The information here is based on everything I have been fortunate to absorb, experience, read, learn, and observe for over a decade in practice and as a parent. I am confident in the science that is already published on nutrition strategies for children with the kinds of problems now being found in autism spectrum disorders. For deeper reading on rationale, research, further biochemistry, or whatever you need to know more about, see the resources section, or visit www.NutritionCare.net for more information and support. ONE Engaging Your Providers Working Together on Nutrition Care and Special Diets           U sing nutrition therapies for a child with special needs can be complicated. Parents need support, guidance, expertise, resources, and encouragement for it, while providers need information they can work with to help you. It is a potent therapeutic tool that can work very well, or not work at all. Now is a good moment for pediatric providers of all stripes to learn about it. Thankfully, we already have highly applicable, well-pedigreed knowledge on child nutrition, plus constantly emerging new information about nutrition and autism, that we can put to use right now. But first, we have to close the gap between providers and parents, and broaden the base of providers who know what to do. Nutrition science is a century old at least, but how to use it in practice is what families and providers need help understanding. Here's why that gap exists, and how to be successful in spite of it, with your existing provider team. While some nutrition care measures can be done at home on your own, others require professional guidance and input. Reliable, local resources are a great thing to have, as your child may need refinement of nutrition-related assessment and treatments. The Big Gap At the 2006 annual conference for the American Dietetic Association, I attended a lecture called "Nutrition Management in Pediatric Rehabilitation." It described standards and goals of nutrition care for infants and children with traumatic brain injuries, stroke, or spinal cord injuries. It did not surprise me that these children have a lot of the same problems as children with autism: cognitive and communication impairments, GI concerns, low muscle tone, gross and fine motor problems, sensory processing handicaps, special nutrition needs, seizures, feeding difficulties. What did surprise me was the degree to which brain-injured children are not only cared for, but loved and embraced by our medical culture--a stark contrast to what children with autism receive when seeking GI or nutrition care. Listening to the hospital staff that gave the presentation, I found myself envious of the clinical attention these unfortunate children get without question, not to mention the support parents receive from bereavement counselors, hospital chaplains, or social service staff, all covered by insurance. Most children in my caseload have an autism spectrum diagnosis. They, too, need an entourage of therapists and providers. I would be thrilled to refer the children I meet for just a fraction of these services, which simply do help children recover, and help their families through it. Clinically speaking, these two groups have many similarities, but they have had very different paths to being in a situation that warrants this care. One group had injuries: skateboard crashes, falls off bikes, near drownings, or strokes. They were injured. What about the other group, the ones with autism? That debate is still at a full boil. Were they injured, or were they born this way? It shouldn't matter. There is a gap in our medical landscape today for children with autism, in terms of the nutrition and GI piece. They usually can't access this kind of care, even though, clinically speaking, there are valid similarities between children with brain injuries and children with autism spectrum disorders. The lecture I mention here touted supplementation and special nutrition supports for brain-injured children. They benefit from coordinated GI care, physical and occupational therapies, and nutrition care. So do children with autism. This is not to debate whether autism is a brain injury; it is about providing appropriate, ethical treatment for the kinds of problems kids with autism have. The autism epidemic has triggered a deeper search for treatments for neurological conditions and chronic disease. Experience from practice in other areas of conventional medicine--such as pediatric rehabilitation from traumatic brain injuries--and newer pieces from the functional medicine movement, are wending their way into the universe of mainstream providers who help children with autism. Even though this is happening too fast for medical science loyalists and too slow for desperate parents, it is progress. For many professionals who have served the autism community for a long time, these ideas are not exactly welcome. Ideas that shake the bedrock of anything rarely are. Many parents feel uncomfortable, too, when they bring up whether or not to use a special diet measure with doctors, psychiatrists, psychologists, or neurologists. So far, on balance, pediatricians are not talking much to parents on the use of special diets. They are not recommending them, and not guiding parents who make the decision to use them anyway. This leaves families of affected children in a big gap, a void, which is filled by searching for distant providers who are willing to help, surfing the Net for supplements, protocols, lab tests, and support groups, and bankrupting themselves by paying for all this care out of pocket. Imagine a young snowboarder sustaining a life-changing traumatic brain injury, and the parent then having to search desperately for care, paying for it all, prioritizing all the interventions, discerning which is best, with no input, referral, follow-up, or guidance from a primary care physician, no local services, and no coordination among specialists. This is the common dilemma for families of children with autism spectrum disorders. When a pediatrician is concerned that one of his young patients may have autism or other learning and developmental delays, he does not make a referral for nutrition care. There are many reasons for this, and it is not because the science behind therapeutic nutrition is weak. Knowing these reasons can help you proceed confidently with your conviction to use a special diet for your child, which by the way is well grounded in decades of nutrition science. Knowing why pediatricians and other MDs in the autism landscape are slow to get on board can also help you engage them in your child's care, which is important for a better outcome. A new dialogue between parent and provider is the offshoot. We are embarking on health care for the most disabled generation of children in U.S. history, so it is time for some serious team-work, and thorough review of what we are doing. Parents are taking a lead role more than ever before as they seek partnerships with inquisitive providers, rather than the paternal style of pediatric care provided for previous generations. Here are explanations for why there is debate about using special diets as therapy for children with autism. As you will see throughout this book, it is not for lack of good science--but more about history, some holes and gaps in the care delivery landscape, and controversy over what tools are best for children. Why the Gap Exists: History, Holes, and Controversy For nearly a century, Western medicine has understood a lot about the nutritional biochemistry and physiology that create growth, development, and learning in infants and children. So, knowledge about nutrition as a therapeutic tool is not new. The new part is recognizing that kids with autism and other developmental or learning problems often have undiagnosed malabsorption or bowel problems, inadequate diets, or all of the above. We already know that these will impede learning, growth, behavior, and functioning in all children, not just kids with autism--which means that fixing these problems is all the more crucial for a child with a developmental delay or special challenge. Oddly, this is not much applied in pediatrics nowadays--that's the gap. How has this gap been able to widen, much less begin growing in the first place, since autism was first described in the 1940s? Three reasons: One, history. Autism was given a peculiar set of assumptions and biases created by the first clinicians who encountered it decades ago. Two, holes. These biases managed to stick for decades in large measure due to holes in the training of physicians. In the latter part of the twentieth century, pediatrics, and medicine in general, moved farther and farther away from nutrition and integrative perspectives. Instead, emphasis grew on using pharmaceuticals for symptomatic treatment, and on practice specializations that splintered patients into separate body parts. This model made it acceptable to compartmentalize autism as a disease of the brain only. Three, controversy. The use of special diets for a condition such as autism has been burned into the public consciousness in part by a controversial figure who dared to raise concerns about the single most sacred cow in modern health sciences: vaccines. Put these three reasons together, and it means that most MD providers practicing today in the realm of autism won't go near this special diet stuff, unless they've made a difficult choice to jump the fence and join thousands of parents who just want help. For a doctor, this can mean losing your job, losing your credibility, losing regular income from health insurers who dictate how you practice or prescribe, and starting up your own practice in which you expect families to pay out of pocket. Physicians are trained to regard autism and other learning or developmental diagnoses as brain problems, not whole body problems. Findings about gut or nutrition problems are too new to be incorporated into anybody's training. And most MDs don't study nutrition anyway--their training and practice are focused on pharmaceutical approaches. Lastly, and surely not least, is the mention of vaccines as anything but miraculous. This can clear a room fast (or perhaps fill it fast, depending on which side of the debate you've fallen). Let's take a quick look at these three pitfalls your provider may have hit, in supporting your goals and interest in using a special diet. History: The Dark Ages Autism was first described in the 1940s. Regarded as a psychiatric condition, it had no precedent in the medical literature before then.1 Some of the very first cases ever described included comments on extreme feeding and nutrition issues, but these were regarded as meaningless peculiarities. The odd bowel problems, violent or aggressive behavior after eating, and bizarre self-imposed diet restrictions garnered little attention, other than to be assumed just another of autism's weird psychological features. The children were believed to be incapable of love, communication, connection, or emotion. Hence the now thankfully defunct phrase "refrigerator mothers," which referred to the belief that some mothers were emotionally so frozen, they could not love and care for their children, and this caused autism. This stunning conclusion held sway as the bedrock of truth under autism. It kept curiosity about the physiology of autism to essentially zero for decades. As incredible as that is, remnants of this thinking linger even today. As recently as 2004, a parent reported to me that the neurologist who diagnosed her toddler at a highly respected children's medical center in New England gave this news: "Your child has autism. He will never love you, or be capable of loving you. Don't waste your time loving him, and in fact, you should start now to distance yourself from him. Stop hugging him; he doesn't understand." This is so profoundly wrong, hopeless, and devastating that it leaves me speechless. I shared this with an in-house colleague of the neurologist and was assured that corrective action would be taken. I have never encountered a parent who believed this about his or her affected child. All parents relate moments, even if they are precious few, of affection, recognition, and love with their children affected by autism. This is the type of provider to simply drop like a stone, and walk away. Save your energy for those who will support you. Holes: The Nutrition Disconnect in Modern Pediatrics In spite of solid science on how child nutrition drives development, learning, and growth, a disconnect prevails in medicine today that goes something like this: Sure, kids need good nutrition to grow. But what does that have to do with the brain? And anyway, if nutrition were a big enough problem to injure the brains of kids with developmental or learning disorders, then surely these kids would not grow normally. Kids have to have adequate diets, and healthy intestines to absorb those diets, in order to grow. They're growing, so nutrition is not part of the picture, and there is thus no link between diets, absorption, and what is going on in their brains. Right? Wrong. You may have a chorus of providers telling you something along those lines, or that there is no proof that special diets help children with autism, Asperger's, sensory processing disorder, or other learning and developmental issues. The nutrition piece of the autism puzzle is easy for these providers to miss, and misunderstand. This doesn't mean it is not valid. This means they missed it, because they don't study nutrition, don't do nutrition assessment and monitoring, and don't implement therapeutic diets. Dietitians and nutritionists do that, not psychiatrists, psychologists, neurologists, or pediatricians. Without a referral to a dietitian from one of these providers, you're probably not going to find one. Even if you did, she is probably working in a major medical center with a mixed-nuts caseload of everything under the sun. She does not have the time or freedom to specialize in therapeutic diets for learning and developmental disorders, especially when the physicians above her in her workplace don't consider it a relevant tool. Excerpted from Special-Needs Kids Eat Right: Strategies to Help Kids on the Autism Spectrum Focus, Learn, and Thrive by Judy Converse All rights reserved by the original copyright owners. Excerpts are provided for display purposes only and may not be reproduced, reprinted or distributed without the written permission of the publisher.