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Nutrition for ASD 1 Introduction and Background According to the DSM-IV, symptoms of autism spectrum disorders (ASD) are social and communication impairment; restrictive, repetitive, stereotyped patterns of behaviors, interests and activities; and abnormal functioning (APA 2000). Autism spectrum disorders include “classic” autism disorder, Asperger’s disorder, and pervasive developmental disorders, not otherwise specified (PDD-NOS). In addition to the primary diagnosis of ASD - intellectual disability, Down’s syndrome, anxiety disorder, Tourette’s syndrome, learning disability, or seizure might also be present (Feucht & Ogata 2010). Atypical dietary habits are not included in the criteria, but in an earlier edition these were included since it is estimated that close to 90% of children with ASD have problem behaviors associated with mealtimes (Johnson, Handen, Mayer-Costa, Sacco 2008). Feeding behaviors in children with ASD bring significant difficulties to meals, as it is not unusual for a child to display neophobia, adhere to rigid routines, hyper- or hypo-sensitive oral and olfactory senses, a short attention span, be a “slow feeder”, and limit acceptable foods to less than five or ten items (Emond, Emmett, Steer, Golding 2010, Bandini et al. 2010). Due to idiosyncratic texture and taste aversions, it is sometimes extremely difficult, if not impossible, to administer a form of multivitamin and/or mineral supplement, or a liquid nutritional shake. In light of these struggles, it is not surprising that many parents turn to complementary and alternative medicine (CAM) options, with an estimated 15-27% of children placed on the popular gluten-free, casein-free diet (GFCF) (Johnson el al. 2008). While the GFCF diet is the most common and well known alternative, some other unorthodox therapies include: Dr. Haas’ Specific Carbohydrate Diet, a variety of elimination diets, the Feingold diet, megadoses of vitamins and/or minerals, an anti-fungal approach with prescribed vancomycin, Nutrition for ASD 2 and omega-3 fatty acid supplementation (Geraghty, Bates-Wall, Ratliff-Schaub, Lane 2010, Feucht & Ogata 2010). Origin of the Gluten-Free, Casein-Free Diet The GFCF diet originated from Reichelt’s Opioid Excess Theory, which states that people with ASD metabolize gluten and casein incompletely to the peptides, gliadinomorphin and casomorphin (Korn 2010). Approximately 43-76% of children with ASD have increased intestinal permeability – “leaky gut” syndrome – and 30-80% have gastrointestinal distress of some kind (Feucht & Ogata 2010, Geraghty, Depasquale, Lane 2010, Korn 2010). Due to the more porous nature of their gut, it is postulated that the peptides move from the intestine to the blood stream, pass through the blood-brain barrier, and attach to the opioid receptors. Korn describes the resulting effect as a “high” characterized by monotonous body movements, withdrawn demeanor, fascination with parts of objects, and distress over changes in routine – all typical autistic behaviors (2010). Knivsberg insisted that gluten and casein’s peptides negatively impact a child’s attention, brain maturation, social interactions, and ability to learn efficiently (Mantos, Ha, Caine-Bish, Burzminski 2011). In addition to the hypothesized opioid theory, abnormally high levels of tumor necrosis factor (TNF) and inflammatory cytokines are recorded, suggesting that ASD increase the likelihood of a non-IgE-mediated food allergy’s presence (Geraghty, Depasquale, et al.2010). Unfortunately, the foods that are favored the most by children with ASD are: dry cereal, crackers and chips, processed chicken nuggets, bread, and plain pasta – obviously creating a conundrum for parents wishing to attempt the GFCF diet (Feucht & Ogata 2010). For the purposes of this paper, the primary focus is on the evidence, both Reichelt proposed that inadequate metabolism of gluten and casein would not only exacerbate ASD, but also a variety of other disorders which include but are not limited to - postpartum psychosis and schizophrenia (Millward, Ferriter, Calver, Connell-Jones 2009). Unfortunately, these other disorders are beyond the scope of this paper. Nutrition for ASD 3 for and against, that the GFCF diet improves behaviors and physiological symptoms of children with autism spectrum disorders. Reichelt and Knivsberg state that autism has a strong genetic component that manifests itself as chemical changes, but is also influenced by environmental stimuli (2009). One example is that neurotransmitters are made of amino acids, so what is ingested and how it is metabolized has a definite impact on the chemical balance (Korn 2010). Nutrient deficiencies impact mood and behaviors, often increasing anxiety and stress hormones as the body fights chronic inflammation and the demands of a young growing body. Both parents and researchers point out how many of the conduct issues that children with ASD struggle with are remarkably similar to behavioral manifestations of gluten sensitivity and celiac disease. The most commonly cited are: inability to focus, ADHD and autistic behaviors, depression, mood disorders, irritability, and lack of motivation (Korn 2010). The situation is further complicated by a wide array of gastrointestinal disturbances that range from constipation to GERD to intestinal lymphoid hyperplasia (Santhanam and Kendler 2012). Tentative Benefits of GFCF Diet The gluten-free, casein-free diet’s effect on a child with autistic spectrum disorder can take anywhere from two months to four years for improvements to emerge, and then progress is still not guaranteed (Santhanam and Kendler 2012). In a recent two-year long study, Whiteley and his colleagues noted a plateau effect in behavioral improvement after eight months (2012). Notable developments are most likely to be found in the ADHD and aggression categories, although the levels are not statistically significant or consistent (Mantos et al. 2011, Whiteley et al. 2010). Mulloy and colleagues recommend continuing the GFCF diet only if acute behavioral Nutrition for ASD 4 changes are noticed relatively soon after starting the diet - so records of the child’s diet and behavior are imperative (Mulloy, Lang, O’Reilly, Sigafoos, Lancioni, Rispoli 2011). The GFCF Diet to Treat Physiological Symptoms Autism spectrum disorders are multi-faceted because in addition to the behavioral component, a variety of physiological disturbances can occur. While constipation and diarrhea are the most common, children often have other non-IgE-mediated food allergy symptoms (a.k.a. delayed hypersensitivities or T-cell-mediated hypersensitivity) (Feucht & Ogata 2010, Geraghty, Bates-Wall, et al. 2010). Findings suggest that children with ASD are at an increased risk for developing allergies to certain proteins in commonly consumed foods, with signs of reaction emerging throughout the GI tract and on the skin (Geraghty, Depasquale, et al. 2010). Pennesi and Cousino found the most common complaints to be “skin problems, red cheeks, red ears, rash, red ring around the mouth and/or anus, hives, dark circles under eyes, sneezing, stuffed nose, and itchy, watery, red eyes (2012, p.4). This exhibition of inflammation, if chronic in nature, supports the idea that cytokine and TNF activity would increase and the intestinal barrier would tend to be more permeable. Reichelt and Knivsberg claim that many studies have found damage in the intestines, which alters the microflora, and negatively impacts the individual’s nutritional status (2009). One can imagine that parents would be reasonably alarmed at this development, and it is not surprising that Geraghty and colleagues found, in the first part of their investigation, that parents of children with ASD were more likely to believe diet impacts physiological and behavioral conditions (2010). Elder described parents as desperately looking for answers, and with little patience for the paucity of well-conducted studies that always point out the need for more research to be done (2008). If by implementing the GFCF diet, the majority of symptoms Nutrition for ASD 5 clear up, then the parents and/or guardians have a valid reason for staying on the plan. Ideally, after the hypersensitivity is confirmed, then omission of gluten and/or casein would be logical, but parents seldom consult with a healthcare professional before starting a CAM treatment. It should be noted that most children outgrow non-IgE-mediated allergies by the time they turn sixyears-old, so reassessment after several years would be wise (Geraghty, Depasquale, et al. 2010). Gluten and Casein as Substrates Unfortunately, the decrease in physical symptoms after starting the GFCF diet is easier to show than an improvement of social-communication or behavioral issues. Korn postulates that because of the intestinal pathology linked with ASD, there must be malabsorption and/or an opiate effect, which leads to a deficiency of nutrients to the brain and autistic behaviors (2010). Reichelt and Knivsberg go as far as to say that the lack of socially meaningful relationships and epileptic seizures found in some, but not all, cases of ASD are very similar to symptoms of opium and heroin addicts (2009). They also draw on the example of phenylketonuria (PKU) to illustrate that removal of the substrate - phenylalanine for PKU, or gluten and casein for autism – will eliminate the predicament. If negative behaviors improve dramatically after eliminating gluten and casein, then either the child was never autistic or the diet actually improves the demeanor of children with ASD (Korn 2010). So, while there are many anecdotal reports to substantiate the GFCF diet’s claim to fame, there are few consistencies to be found in legitimate research to back up its rather fantastic claims (Elder 2008, Millward et al. 2009). Complications of Alternative Diets and the GFCF Route Many of the alternative therapies and elimination diets used to treat ASD are potentially harmful, and also exacerbate social separation from peers. To name a few possible complications: large doses of EPA/DHA inhibit platelet aggregation, and megadoses of vitamin Nutrition for ASD 6 B6 and magnesium cause peripheral neuropathy. The Specific Carbohydrate Diet eliminates grains, dairy, sucrose, and complex carbohydrates -which are valuable sources of vitamins, minerals, and fiber. Last, but not least, the gluten-free, casein-free diet compromises a growing child’s source of calcium, vitamin D, iron, and protein. Gluten-free and casein-free foods are generally not fortified with the B vitamins and iron, and tend be less acceptable to the average person’s palate. Children with ASD already tend to avoid fruits and vegetables, have late acceptance of solid foods, might avoid animal sources of protein, and some exhibit pica tendencies (Feucht & Ogata 2010, Emond et al. 2010, Geraghty, Bates-Wall 2010). Although the child initiates the majority of food selectivity, parents of children with ASD have also been found to offer less variety of foods to the affected child (Bandini et al. 2010). When combining the fact that the majority of ASD patients prefer starchy foods and tend to be neophobic - the transition to the GFCF diet has the potential to disrupt the entire family system and substantially stress out the child. Since most of the children with ASD who are put on the GFCF diet are young and still have many years to grow, eliminating cow’s milk unnecessarily compromises their bone health. Medication-nutrient interactions also complicate the picture, especially anti-convulsants which adversely impact the metabolism of calcium and vitamin D (Crowe 2012, p. 1105). Both males and females with ASD are at risk for weak bone development and diminished bone cortical thickness. In addition to the exclusion of cow’s milk products, other negative factors are lack of exercise and weight-bearing activities, overall reluctance to eat a varied diet with adequate protein, and digestive problems (Geraghty, Depasquale, et al. 2010, Marcason 2009, Mulloy et al. 2010). Probiotics, which are also naturally found in dairy products, have been suggested in the past to help ASD patients with GI complications. But when food with casein is restricted and Nutrition for ASD 7 the child is unwilling or unable to swallow a pill, it becomes almost impossible for the intestine’s microflora to be revitalized. ASD Cases with Severe Nutrient Deficiencies Surprisingly, the majority of children with ASD have gross growth parameters that are within the normal limits (Feucht & Ogata 2010). Upon further investigation, researchers found that many children ate enough of the few foods they preferred to make up for any nutrient deficiencies that would have otherwise occurred (Geraghty, Depasquale 2010). While most of the children slip by, there are several noteworthy case studies illustrating a diet restrictive enough to cause a deficiency disease. The cases were not confined to undeveloped countries, but ranged across the United States, Wales, and Japan. Pineles reported three cases of autistic children with vitamin B12 and vitamin A deficiencies, which resulted in optic neuropathy (Pineles, Avery, & Liu, 2010). An adolescent boy with severe learning disabilities and autism spectrum disorder presented to Stewart and Latif with bilateral leg pain, significantly stunted bone growth, and near undetectable vitamin D levels. Upon further investigation, the patient was diagnosed with symptomatic nutritional rickets due to poor diet and possible parental negligence (Stewart & Latif 2008). A 17-year-old male with ASD measured 50% height for age and 1025% weight for age, and suffered permanent vision loss because of a severe vitamin A deficiency (McAbee, Prieto, Kirby, Santilli, Setty 2009). Two additional case studies report vision problems in two young boys with ASD, who also had severe vitamin A deficiencies – but with massive doses of intramuscular or oral vitamin A the damage proved to be reversible (Steinemann & Christiansen 1998, Tanoue, Matsui, Takamasu 2012). The characteristic that the seven patients with ASD have in common is a critically limited diet that lacks dairy, fruits, vegetables, and adequate fiber. Usually for several years, the subjects severely self-restricted to Nutrition for ASD 8 simple, processed carbohydrates such as fried potatoes, cookies, bagels, rice balls, and chicken nuggets. These cases serve to demonstrate the measures children with ASD are capable of taking in terms of their diet, which have long-term consequences. To consider implementing a more restrictive diet, like the GFCF model, without due cause is simply inviting more nutrition-related problems down on the situation. Role of the Parents In response to several recent studies on ASD and the GFCF diet, Elder states that, “many of the newer, well-publicized interventions have little literature-based support, and may actually produce hardships for families while creating false hope of miraculous cures”(2008, p. 584). But parents often feel that trying a diet is better than doing nothing at all. Although Mantos noted that it is not clear what benefits the increased attention to structure, meals, and the child might have on pathological symptoms (2011). Not only do they hope for improvement of ASD behaviors, but Akins observed that parents also choose CAM treatments for two other reasons: (1) as an attempt to create an alternative identity for both the parents and the child, and (2) to gain some measure of control in a situation they feel is out of their hands (Akins, Angkustsiri, Hansen 2010). But reality is that by taking this route, treatment resources are diverted down a path with no guarantee of success, and may only serve to increase a child’s social stigmatization. As Millward and her colleagues aptly pointed out, “a child with autism is already restricted in lifestyle by his/her disorder but undergoes a further lifestyle restriction in terms of diet” (2009, p.3). Gaps and Dissonance in Past Research The most recent data records that 1 in 110 children in the United States have an autism spectrum disorder, yet dietetics research in this field is far behind the rapid rise in cases (Akins et Nutrition for ASD 9 al. 2010, Pennessi & Cousino 2012). There is a desperate need for healthcare professionals in this area, and for evidence-based dietary advice to be offered to combat the abundance of fad solutions offered on the Internet. CAM products and practitioners are filling the voids in treatment that are not addressed in the conventional method – with 52-95% of parents of patients with ASD admitting to using it in the past or currently (Akins et al. 2010). But upon further investigation, the Cochrane Review only approved two out of thirty-five GFCF diet studies in their most recently published document – one conducted by Knivsberg in 2002, and another by Elder in 2006 (Millward et al. 2009). A few key shortfalls of the studies are the very small number of subjects, lack of control groups, lack of definition of food selectivity, skewed data, numerous flaws, and bias of the researchers and/or parents (Feucht & Ogata 2010). For the present moment, the research merely demonstrates the possibility of a correlation between improvement of ASD behaviors and the GFCF diet (Mulloy et al. 2010). Caution Required When Making Drastic Dietary Changes To assume that simply eliminating gluten and casein will clear up a myriad of maladaptive behaviors, rituals and routines, social interaction barriers, and physiological symptoms is an alarming display of ignorance on the complexities of a developmental disorder. Autism spectrum disorders impact every aspect of an individual, and so every part must be addressed when searching for a solution. It is also important to take into account that, due to impaired communication skills, some children may not be able to clearly convey discomfort or pain they feel in their gastrointestinal tract or if their sensory routes are overwhelmed. The best strategy is to take note of what had been effective in the past and design an intervention along the same lines – such as starting with foods in the same form that the child already eats, and slowly incorporating new items. Children with ASD operate best when there are consistent, familiar Nutrition for ASD 10 rules, so change will be slow but it is possible (Feucht & Ogata 2010). But Wood and colleagues caution parents and healthcare practitioners to avoid unnecessarily restricting the diet, because it can inhibit the success of a therapeutic feeding treatment (Wood, Wolery, Kaiser 2009). A team consisting of a primary physician, therapist, registered dietitian, and/or speech pathologist may be required to work with a child to assess their stage of development and then help increase the variety of their diet. The research that has been conducted in the past decade and a half shows both enormous potential for discovery or error in future studies, depending on the chosen method of investigation. Anecdotal evidence from parents of improvement in their child’s physiological symptoms is encouraging, but consistency is needed in randomized controlled studies before professional statements of efficacy can be given. While understanding must be extended to parents searching for answers to behavioral issues, it would behoove them to heed the Cochrane Review’s statement that does not support the use of the gluten-free, casein-free diet for the treatment of autism spectrum disorders. There is a glimmer of a correlation between the variables, but in light of the dearth of legitimate research an absolute decision cannot be made as of yet. Nutrition for ASD 11 References Akins, R., Angkustsiri, K., & Hansen, R. (2010). Complementary and alternative medicine in autism: An evidence-based approach to negotiating safe and efficacious interventions with families. Neurotherapeutics, 7(3), 307–319. doi:10.1016/j.nurt.2010.05.002 American Psychiatric Association. (2000). Pervasive developmental disorders. In Diagnostic and statistical manual of mental disorders (Fourth edition---text revision (DSM-IV-TR). Washington, DC: American Psychiatric Association, 69-70. Bandini, L. G., Anderson, S. E., Curtin, C., Cermak, S., Evans, E. W., Scampini, R., Maslin, M., et al. (2010). Food Selectivity in Children with Autism Spectrum Disorders and Typically Developing Children. The Journal of Pediatrics, 157(2), 259-264. doi:10.1016/j.jpeds.2010.02.013 Crowe, Jeanne P. (2012). 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