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CURRENT EVIDENCE FOR DIET THERAPIES IN THE TREATMENT OF AUTISM SPECTRUM DISORDER Melissa Gutschall, PhD, RD, LDN Assistant Professor and Director, Didactic Program in Dietetics Appalachian State University Consultant Dietitian: Southwest Virginia Care Connection for Children (Virginia Department of Health/University of Virginia) Definitions Autism Spectrum Disorder (ASD) Autistic Disorder “This is what most people think of when hearing the word "autism." People with autistic disorder usually have significant language delays, social and communication challenges, and unusual behaviors and interests. Many people with autistic disorder also have intellectual disability.” It is the most severe. (http://www.cdc.gov/ncbddd/autism/facts.html) Asperger Syndrome “Complex developmental and neurological condition that typically appears during the first three years of life. It affects brain function, particularly in the areas of social interaction and communication skills.”(eatright.org) It is a spectrum from mild to severe “People with Asperger syndrome usually have some milder symptoms of autistic disorder. They might have social challenges and unusual behaviors and interests. However, they typically do not have problems with language or intellectual disability.” (http://www.cdc.gov/ncbddd/autism/facts.html) Pervasive Developmental Disorder (PDD-NOS) “Diagnosis applied to children or adults who are on the autism spectrum but do not fully meet the criteria for another ASD such as autistic disorder or Asperger Syndrome.” (http://www.autismspeaks.org/what-autism/pdd-nos) Characteristics Little or no eye contact Nonresponsive to verbal cues Difficulty expressing needs Repetitive words and phrases Insistence on sameness Little social interaction; prefers to be alone Tantrums Inappropriate attachment to objects Prevalence 1 in 88 children More common in boys 1 in 54 boys 1 in 252 girls 1% of North American Population Centers for Disease Control, 2012 Risk Factors Older parents Being a male Having a parent or sibling with the disorder Epilepsy and genetic disorders such as: Fragile X syndrome Tuberous sclerosis Tourette Syndrome Down Syndrome Pre-, peri-, and neonatal factors PROPOSED DIET THERAPIES Proposed Diet Therapies Gluten Free/Casein Free Food Rotation Specific Carbohydrate Gut and Psychology Syndrome Diet (GAPS) Body Ecology Diet Feingold and Failsafe Diets Raw Food Diet Antioxidant Diet Ketogenic Diet Weston A Price Foundation/Traditional Diet Gluten and Casein Elimination Diet (GF/CF) Complete removal of gluten and casein Gluten (found in wheat, rye, barley, oats) Casein (found in milk and milk products) Evidence for Gluten and Casein Elimination diet Double-blind study on 15 children of a gluten free, casein free diet (Elder et al, 2006) Dietary intervention on 149 children (Elder et al, 2006) Notable reports of children being “cured” and acquiring language skills and marked social connectedness. 81% improvement shown in 3 months of intervention Most assessments were made by parents who knew their child was on the diet. Single-blind study on 10 children in both patient and control group (Knivsberg et al, 2002) Observations were performed before and after 1 year. Statistically significant improvements with respect to aloofness, routines and rituals, and responses to learning. Evidence for Gluten and Casein Elimination diet (cont.) Antibodies against gliadin, casein, brain myelin basic protein, egg, corn, and soy measured in 50 children with autism (Vojdani, Pangborn et al, 2003) Significant numbers of children with antibodies against casein and gliadin which can trigger inflammation and immune response. Benefits of the diet using the Childhood Autism Rating Scale (CARS); participants given a supply of compliant food (Elder et al, 2006) No statistical significance was found in the CARS scores, but anecdotal reports found decreased hyperactivity and tantrums and increased language in 7 children. Ingredients to Avoid Casein Casein (sodium caseinate, hydrolyzed casinate) Rennet casein Whey Milk solids Lactose (sodium lactyate) Lactalbumin, lactalbumin phosphate, lactoglubulin, lactoferrin Galactose Caramel color Natural ingredients (call manufacturer) Recaldent (ingredient in whitening chewing gum) Baked goods that contain milk products Butter Cheese Ghee Yogurt Ingredients to Avoid Gluten Wheat (all kinds and forms) Barley Spelt, kamut, einkorn, emmer, duram, semolina, triticale Wheat bran, couscous, graham flour, matzo, wheat germ, cracked wheat, farina, tabbouleh Malt, malt flavoring, malt extract, malt syrup, malt vinegar Rye Untested Oats Hydrolyzed wheat protein Soy sauce (may be made with wheat, look for La Choy brand or one that states gluten free) Seasoning (may use wheat) Marinades (may have wheat or barley) Broth (may be made with wheat) Foods to look for: Gluten free Rice Corn Buckwheat Millet Quinoa Bean flours Amaranth Arrowroot Sorghum Tef/teff Wild rice Casein Free Soy products (some contain milk) Nut products Coconut Look for fortified milk alternatives Soy Almond Rice Hemp Coconut Food Rotation Diet Food rotation rather than elimination to evaluate overall improvement in symptoms Used in conjunction with antibody tests that can help in determining which foods to rotate Rotations can occur daily, weekly, or monthly Eliminate most reactive foods, rotate less reactive foods on a daily basis and consume primarily nonreactive foods Specific Carbohydrate Diet Pioneered as a treatment for ulcerative colitis (Gotschall, 1994) Designed to heal intestinal permeability and combat overgrowth of pathogens in the gut mucosa Started in autism to treat GI symptoms and possibly behavior issues Carbohydrates that aren’t digested or absorbed stay in intestinal tract and result in overgrowth of yeast and bacteria, causing injury and impaired digestion Starve organisms to reestablish intestinal health Specific Carbohydrate Diet Eat single sugars fruits, honey, properly made yogurt, and certain vegetables Allowed foods: proteins (eggs, natural cheese, homemade yogurt) non-starchy vegetables (cabbage, cauliflower, onions, spinach, peppers) variety of nut and nut flours (almonds, brazil nuts, walnuts) soaked lentils and beans Prohibited foods: grains or products with trace amounts of grains Gut and Psychology Syndrome Diet (GAPS) Based on the Specific Carbohydrate Diet Introduced in stages The best foods to include: Fruits should be consumed on their own not with meals because they have a different digestion pattern At every meal consume Eggs, fresh meats (not preserved), fish, shellfish, Fresh vegetables and fruits, nuts and seeds, garlic and olive oil Consume both raw and cooked vegetables natural fats fermented foods homemade meat or fish stock Avoid processed foods Body Ecology Diet Rebuild immunity and intestinal flora (Gates, 2006) Based on traditional healing principles using fermented foods (young coconut kefir and cultured vegetables) Establishment of a slightly alkaline pH to enable beneficial flora to flourish Recommended: Seaweed Grains such as buckwheat, quinoa, millet, and amaranth. Grains are soaked and fermented, sometimes sprouted to allow for easy digestion. Meals are balanced on a 80-20 rule. Non-starchy vegetables make up the bulk with room for starchy vegetables, proteins, and grains. Dairy products aren’t allowed initially but eventually you add raw butter later in the diet. Feingold and Failsafe Diets Elimination of food colors and flavors: nerve cell stimulation (Feingold, 2002) Foods to avoid Group I foods containing natural salicylates: almonds, apples, apricots, berries, cherries, grapes, nectarines, orange, peaches, plums, prunes, tomatoes, cucumbers Group II foods containing food additives and colors: factorymade cereals, instant breakfasts, baked goods, luncheon meats, frozen fish, candies, soft drinks, desserts, and any other foods containing food additives The Failsafe diet reduces food additives, salicylates, amines and flavor enhancers like MSG (Dengate, 2008) Evidence for Feingold and Failsafe Diets Elimination of food additives showed a decline in symptoms of hyperactive patients (McCann et al, 2007) Deficiency of phenol sulfur transferase which helps break down salicylate phenols. Symptoms of salicylate sensitivity: dark circles under eyes hyperactivity difficulty falling asleep at night inappropriate laughing/giggling head banging Raw Food Diet Based on uncooked and unprocessed foods (Jeep et al, 2008) Sprouts, fresh fruits and vegetables, dried fruits, seeds, nuts, gains, seaweed. Heating foods above 116 F is thought to destroy enzymes Recommends soaking seeds and nuts and dehydrating other foods. Retaining natural enzymes and antioxidants in nutrient dense foods Antioxidant Diet Reduce oxidative stress, and thus inflammation, in an overactive immune system (Johnson et al, 1972) Recommended foods include: Fresh vegetables Fresh fruits Cooked legumes/starchy vegetables Whole grains Moderate amounts of lean meat Super foods Broccoli Brussels sprouts Sea vegetables Berries (blueberries, cranberries, goji berries) Ketogenic Diet Pilot study with 30 children using the John-Radcliffe version for 6 months (Evangeliou et al, 2003) Energy intake distribution: 30% MCT oil, 30% fresh cream, 11% saturated fat, 19% carbohydrates, 10% protein Evaluated using CARS scores before and after the intervention 2 significant improvement 8 average improvement 8 minor improvement Weston A Price Foundation Diet or Traditional Diet Consume unprocessed or minimally processed food Traditional fats (animal fats, dairy fats, olive oil, cod liver oil) Organic fruits and vegetables Raw dairy products Soured or lacto-fermented dairy vegetables Whole grains (soaked or soured to neutralize phytic acid) Bone stocks Supports local foods and farms Opposition to veganism and some aspects of vegetarianism Summary of Diet Therapies Limited evidence Contradictions and commonalities among the diets Routine nature of a diet plan Feasibility for family Limiting foods vs. challenges of food acceptance Nutritional Deficiencies Vitamin D levels are lower in autistic children (Kocvaska, 2012) Consumption of more vitamin B6, vitamin E and less calcium (Herndon, 2009) Low intakes of magnesium, zinc, selenium, vitamins A, B-complex, D and E, omega-3 fatty acids, and carnitine (Bandini et al, 2010) Iron deficiency (Reynolds et al, 2012) Reduced absorption of vitamin B12 (Ashwood and Van de Water, 2004) Evidence for Supplementation Use of a broad-based multivitamin and mineral supplement reduced sleep and GI symptoms (Adams and Holloway, 2004) Supplementing L-carnosine improved the Gilliam Autism Scale (Chez et al, 2002) Behavioral improvements when supplementing vitamin B6, folate (Rimland, 1988), omega-3 fats (Amminger, 2007), vitamin C (Dolske, 1993) Oral supplementation with magnesium and vitamin B6 improved social interactions, communications and intellectual function (Mousain-Bosc et al, 2006) Daily supplementation of vitamin C and flax oil improved inattention, hyperactivity, learning problems, and social problems (Curtis, 2008) Nutrition/Medication Interactions Anti-depressants (SSRI’s) Antipsychotics Stimulants Affect appetite and weight Meal/medication regimen Anticonvulsants Calcium (600-1000 mg)/Vitamin D (2000-4000 IU) Treat symptoms rather than cause Nutrition Therapy Summary (Adapted from Strickland E, “Eating For Autism”, 2009) Heal the Child’s Gut Elimination/Challenge Diet Treat Feeding Problems Enhance Cognitive Function Identify and Treat Food Allergies Nutraceuticals and Nutrients Enhance Detoxification and Immune Systems References Elder JH, Shankar M, Shuster J, et al. The gluten-free, casein-free diet in autism results of a preliminary double blind clinical trial. J Autism Dev Disord. 2006; 36:413-420. Knivsberg, A. M., Reichelt, K. L., Hoien, T., & Nodland, M. (2002). A randomized, controlled study of dietary intervention in autistic syndromes. Nutritional Neuroscience, 5, 251–261 Knivsberg, A., Reichelt, K. L., Nodland, N., & Hoien, T. (1995). Autistic syndrome and diet: A follow-up study. Scandinavian Journal of Education and Research, 39, 223–236. Vojdani A, Pangborn JB, Vojdani E, et al. Infections, toxic cheicals and dietary peptides binding to lymphocyte receptors and tissue enzymes are major instigators of autoimmunity in autism. Int J Immunopathol Pharmacol. 2003; 16:189-199. Gotschall E. Breaking the vicious cycle: intestinal health through diet Kirkton, Ontario, Canada: Kirkton Press; 1994. Gates D. The body ecology diet. Bogart, GA: Body Ecology; 2006. Finegold, S. M., Molitoris, D., Song, Y., Liu, C., Vaisanen, M. L., Bolte, E., McTeague, M., Sandler, R., & Wexler, H. Gastrointestinal microflora studies in late-onset autism. Clinical Infectious Diseases. 2002; 35: S6–S16. Dengate S. Fed up. North Sydney, Australia: Random House Australia; 2008. McCann D, Barrett A, Cooper A, et al. Food additives and hyperactive behavior in 3-year-old and 8/9-year-old children in the community: a randomised, double-blinded, placebo-controlled trial. Lancet. 2007;370: 1560-1567. Jeep R, Couey R, Pitman Ellington S. the super-antioxidant diet and nutrition guide. Charlottesville, VA: Hampton Roads Publishing Company; 2008. Johnson RR, McClure KE. High fat rations for ruminants. I. The addition of saturated and unsaturated fats to high roughage and high concetrate rations. J Anim Sci. 1972; 34:501-509. Evangeliou, A., Vlachonikolis, I., & Mihailidou, H. Application of ketogenic diet in children with autistic behavior: Pilot study. Journal of Child Neurology. 2003; 18: 113–118. http://en.wikipedia.org/wiki/Weston_A._Price_Foundation Kocovska E, Fernell E, Billstedt E, Minnis H, Gillberg C. Vitamin D and autism: clinical review. Res Dev Disabil. 2012; 33(5):1541-50. Doi: 10.1016/j.ridd.2012.02.015 References Bandini LG, Anderson SE, Curtin C, Cermak S, Evans EW, Scampini R, Maslin M, Must A. Food selectivity in children with autism spectrum disorders and typically developing children. J Pediatr. 2010; 157(2):259-64. Doi: 10.1016/j.jpeds/2010.02.013. Reynolds A, Krebs NF, Stewart PA, Austin H, Johnson SL,Withrow N, Molloy C, James SJ, Johnson C, Clemons T, Schmidt B, Hyman SL. Iron status in children with autism spectrum disorder. Pediatrics. 2012; 130; Suppl 2: S154-9. Doi: 10.142/peds.2012-0900M. Ashwood P, Van de Water J. A review of autism and the immune response. Clin Dev Immunol. 2004;11:165-174. Adams JB, Holloway C. Pilot study of a moderate does multivitamin/mineral supplement for children with autistic spectrum disorder. J Altern Complement Med. 2004; 10(6):1033-9. Chez MG, Buchanan CP, Aimonovitch MC, Becker M, Schaefer K, Black C, Komen J. Double-blind, placebo=controlled study of L-carnosine supplementation in children with autistic spectrum disorders. J Child Neurol. 2002;17(11):833-7. Rimland B. Controversies in the treatment of autistic children: vitamin and drug therapy. J Child Neurol. 1988;3:S68-S72. Amminger GP, Berger GE, Schafer MR, et al. Omega-3 fatty acids supplementation in children with autism: a double-blind ransomized, placebo-controlled study. Biol Psychiatry. 2007;61:551-553. Dolske MC, Spollen J, McKay S. A preliminary trial of ascorbic acid as a supplemental therapy for autism. Prog Neuropsychopharmacol Biol Psychiatry. 1993;17:76-774. Mousain-Bosc M, Roche M, Polge A, Pradal-Prat D, Rapin J, Bali JP. Improvement of neurobehavioral disorders in children supplemented with magnesium-vitamin B6. II. Pervasive developmental disorder-autism. Magnes Res. 2006; 19(1): 53-62. Curtis L, Patel K. Nutritional and environmental approaches to preventing and treating autism and Attention Deficit Hyperactivity Disorder (ADHD): A Review. Journal of Alternative and Complimentary Medicine. 2008; 14(1):79-85. Ahearn, W. H., Castine, T., Nault, K., & Green, G. An assessment of food acceptance in children with autism or pervasive developmental disorder-not otherwise specified. Journal of Autism and Developmental Disorders. 2001; 31: 505–511. Latif A, Heinz P, Cook R. Iron deficiency in autism and Asperger syndrome. Autsim: The international journal of research & practice. 2002; 6(1):103 Srinivasan P. A review of dietary interventions in autism. Annals of Clinical Psychology. 2009;21(4):237-247. Herndon AC, DiGuiseppi C, Johnson SL, Leiferman J, Reynolds A. Does nutritional intake differ between children with autism spectrum disorders and children with typical development?. J AutismDev Disord. 2009; 39(2): 212-22. Doi: 10.1007/s10803008-0606-2. EATING BEHAVIORS Dietary Management Most individuals with autism have low levels of food acceptance (Ahearn et al, 2001) Most cases require trial and error Record keeping is important to track and develop dietary strategies Add foods before you subtract Eliminate processed foods first “Picky Eating” Sensory feeding problems Hypersensitivities to textures, smells, temperatures, or tastes Slowed progression of feeding development Symptoms from infancy Difficult/slow feeders Late introduction of solids Picky Eater vs. Problem Feeder Picky eater Eat more than 40 different foods Will return to a food Tolerates new foods on plate Eats most food textures 15-25 exposures Problem feeder Eat less than 40 foods Never return to a food Breaks down when presented with new foods Refuses entire categories of textures >25 exposures Possible reasons Anxiety about unknown foods Craving for certain foods Dislike of foods related to GI upset Loss of appetite Sensations – acidity, bitterness, etc. Deficiencies that may affect taste and sensory perception Oral motor issues Food allergies Selective Food Patterns Related to Autism-Associated Behaviors Behavior Need for routine, difficult with transitions Short Attention Span Effect on Eating Mealtime routine Refusal of unfamiliar food, dish or location Limited number of accepted foods Loss of interest in eating after only a few minutes Selective Food Patterns Related to Autism-Associated Behaviors Behavior Sensitivity Easily overwhelmed or overstimulated Impaired social interaction Effect on Eating Restricted/refused intake due to hypersensitivity Less responsive to positive eating behaviors modeled by others INCORPORATING SENSORY EXPERIENCES Myth: “Eating is Easy” Sensory Factors: Visuals Stimulating Calming Brand-packaging Monochromatics Bright, Large multi-color, small shapes, details Rapid movements Fluorescent lighting Total darkness shapes, few details Muted colors Slow movements Dark or low light Sensory Factors: Textures Stimulating Calming Crunchy Gummy Hard Soft Thick Thin Hot/Cold Cool/Warm Gooey Silky Sensory Factors: Smell Stimulating Calming Mint Lavendar Lemon Rose Cinnamon Clove Ammonia Vanilla Coffee Bergamot Sensory Factors: Taste Stimulating Calming Sour Sweet Bitter Salty Spicy Umami Sensory Factors: Sounds Stimulating Chewing, slurping, scraping Loud, fast, erratic Major keys Rock, rap, hip-hop, heavy metal Calming Quiet foods and utensils Soft, slow rhythms Minor keys Classical, folk, country, R&B FEEDING SKILLS Assessing Feeding Skills Age vs. developmental level of child Previous feeding experiences Position Texture/consistency of food and drink Previous food challenges Mouth movement and head position Sensory aspects of feeding and tactile defensiveness Visual/auditory stimuli Assessing Feeding Skills. . . Smell of food Temperature of food Taste of food Utensils used, amount of assistance needed Fluid intake Dental hygiene and oral health/chewing and swallowing ability Developmental Stages Parallel eating and mealtime behaviors Match goals to developmental window: Regulation and Interest (0-3 months) Engagement and Attachment (3-6 months) Purposeful Communication (6-12 months) Sharing and Problem Solving (12-18 months) Creating Ideas (18-36 months) Connecting Emotions and Ideas (36-48 months) Self-reflection (4 yrs. +) INTERVENTIONS -PNCM, 2012 Myth: “She’ll eat when she’s hungry. . .she won’t starve.” Nutrition Interventions – Behavioral Avoid overwhelming the child (offer manageable foods) Introduce foods in familiar forms Slow, gradual changes Consistent with other effective approaches Feeding Therapy: Positive Reinforcement; Non-food rewards Escape Extinction – non-removal of utensil or physical guidance Stimulus Fading – increasing number of bites or amount of food on spoon Nutrition Interventions – Meal Pattern Modify portion sizes Adjust meal and snack schedule Stop grazing-meals have a beginning and end 2 hours between meals and snacks Avoid constant sweet drinks Nutrition Interventions – Feeding Environment Structure – same time each day Appropriate feeding equipment Feeding time Avoidance of distractions Note and monitor behaviors Modeling by parents Nutrition Interventions: Referrals Early Intervention Programs PT/OT/Speech Food availability and resources Registered Dietitian STRATEGIES Myth: “He’ll outgrow picky eating.” Division of Labor in Feeding (Satter) Parent What to serve When to serve Child Whether to eat How much to eat Get Permission (Klein) Trust in the feeding relationship Supports children with complicated sensory challenges Promotes enjoyment and confidence “Adult sets goals – child sets pace” Sequential Oral Sensory (SOS) (Toomey) Transdisciplinary team approach which assess the “whole child”: organ systems, muscles, development sensory, oral-motor, learning/behavior, cognition, nutrition and environment. The SOS Approach focuses on increasing a child’s comfort level by exploring and learning about the different properties of food and allows a child to interact with food in a playful, non-stressful way. Food Chaining (Fraker) Imagine a child with difficulty eating What foods does the child like? Consider nutritional value of the foods What similar but more nutrient dense foods do you want to add first? Food Chaining Map Favorite Foods Alternatives 1 Alternatives 2 Alternatives 3 Alternatives 4 Frozen chicken nuggets Homemade nuggets Nuggets dipped in ketchup Wendy’s chicken Nuggets without nuggets breading Homemade chicken circles Nuggets dipped in hummus Other “fast food” nuggets Other-meat circles Nuggets dipped in gravy McDonalds Burger King Chicken Nuggets chicken Nuggets Non-chicken nuggets Adapted from Roberts, 2012 Food Chaining Map Favorite Foods Alternatives 1 Alternatives 2 Alternatives 3 Goldfish crackers Annie’s Cheesy Bunnies Crackers dipped Veggies dipped in cheese sauce in cheese sauce Vegetable cheese casserole Alternate flavor Goldfish Crackers dipped Veggies dipped in onion dip in onion dip Bread spread with onion dip Cheese flavored Crackers dipped Veggies dipped crackers in hummus in hummus Alternatives 4 Toast with hummus Adapted from Roberts, 2012 Food Chaining Map Favorite Foods Alternatives 1 Alternatives 2 Alternatives 3 Alternatives 4 Pediasure Pediasure with applesauce Pediasure with carrots Pureed carrots Carrots with texture Pediasure with pureed pears Pediasure with peas Pureed peas Bread dipped in peas Pediasure with mashed potatoes Pediasure with beets Pureed beets Beets mixed with hummus Adapted from Roberts, 2012 Changing Diet Journey Fast Food Fast Food + Vegetable Healthy Fast Food Home Cooking Organic Foods/Local Foods Make New Foods Fun Interact with food in a playful way Tolerate E.g., food in the room dog’s dish and child’s dish Touch, smell, taste, sound “Try-it” bowl “What does it sound like when you chew it?” Let child help prepare Eat With others With imagination Role of the RD Identify a picky eater vs. a feeding problem Document suspected feeding problem Initiate and inform interdisciplinary feeding team Assist in developing feeding intervention plan Educate parents on nutritional needs and basic feeding strategies Resources Pediatric Nutrition Care Manual, Academy of Nutrition and Dietetics, 2012 Fraker C, Fishbein M, Cox S, Walbert L. (2007). Food Chaining: The proven 6-step plan to stop picky eating, solve feeding problems, and expand your child’s diet. Philadelphia, PA: Da Capo Press. Susan L. Roberts, MDiv, OTR/L Kay Toomey, PhD www.ellynsatter.com USDA Guidelines, 10 tips series www.mealtimenotions.com Ellyn Satter http://www.sosapproach-conferences.com/about-us/about-kay-toomey Marsha Dunn Klein, MEd, OTR/L http://www.susanlroberts.com/index.html www.choosemyplate.gov Gluten and casein free recipes and shopping lists www.savingdinner.com www.whattofeedyourkids.com QUESTIONS??