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Amber Chase U3A1

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u03a1 Project – Controversial Treatments

AMBER CHASE Applied Behavior Analysis Capella University

u03a1 Project – Controversial Treatments

You might think of autism spectrum disorder (ASD) as a new problem because it has become so much more prevalent in recent years. Since its discovery 60 years ago, autism has been puzzling, fascinating and massively researched. Autism was once thought to be very rare. Studies in several countries sought to identify children with autism through a canvass of hospitals, clinics, physicians, special schools, and other institutions found a prevalence of about 4 children with autism per 10,000 children in the general population (Rapin, 1997). In ASD, many parents resort to alternative treatments and these are generally perceived as risk free. Among these, the most commonly used is the gluten-free/casein-free diet. A gluten-free/casein-free diet is also known as the GFCF diet. A GFCF diet is one of several alternative treatments for children with autism. When following this strict elimination diet, all foods containing gluten (found in wheat, barley and rye) and casein (found in milk and dairy products) are removed from the child's daily food intake. The popularity of these diets indicates a need for more research into their efficacy. The first author to establish an association between shizophrenia and the foods containing gluten was Dohan (Mari-Bauset, S., Zazpe, et all., 2014). The withdrawal of Gluten improved symptoms and their reintroduction worsened them (Mari-Bauset, S., Zazpe, et all., 2014). For children with ASD these diets involve significant changes to their routine and changes to their routine can have either a good or a bad effect on their behavior. Additionally, elimination diets works against efforts to improve the social integration of children with ASD, in that they are not able to eat the same foods as their peers. There are relatively few original studies on elimination diets that analyze the impact of foods on behavior in ASD. Consequently, many parents wonder whether if the use of this diet will make any kind of difference in the behavior of their child. Some people also believe that children with autism restrict their own intake, because they prefer bland food like white bread. This diet is based on the theory that children with autism may have an allergy to higher sensitivity to foods containing gluten or casein. With this, many people think that eliminating them from their diet will change a child's behavior. It could also have the opposite effect and make a child's behavior worse. There may be some scientific merit to the reasoning behind a gluten-free/casein-free diet. Researchers have found abnormal levels of peptides in bodily fluids of some people who have symptoms of autism. Still, the effectiveness of a GFCF diet for autism has not been supported by medical research; in fact, a review of recent and past studies concluded there is a lack of scientific evidence to say whether this diet can be helpful or not. Unfortunately, eliminating all sources of gluten and casein is so difficult that conducting randomized clinical trials in children may prove to be very difficult. The studies by Elder et al and Knivsberg et al reported here were developed from Cochrane systematic review by Millward et al. Knivsberg et al reported three outcomes, which show significant difference for GFCF diet compared to the non-diet group as evaluated by
DIPAB (standard evaluation instrument used on Danish children) (Widyahening, I., & Ismail, R., 2011). Those outcomes were overall autistic traits, social isolation, and general ability in communication and interaction. Two outcomes showed insignificant difference: cognitive function which was assessed based on “Leiter International Performance Scale” (LIPS), and motor ability which assessed based on “Movement Assessment Battery for Children”. Several of these studies demonstrated significant improvements in intervention vs control groups, and Millward et al. reported the appearance of a possible diet-related autism phenotype that seems to be emerging supportive of a positive dietary effect with slight improvement in certain groups with autism spectrum disorders. On the other hand, Knivsberg et al, did not observe any improvement after introduction of the elimination diet, but rather behavioral regression due to stigmatization. Elder et al and Knivsberg et al did not find any improvement in the behavior of participants in the intervention group (Mari-Bauset, S., Zazpe, et all., 2014). The evidence to support gluten-free, casein-free diets is limited and weak, such dietary restrictions being associated with social rejection, stigmatization, deficits in socialization and integration, and a misuse of resources, as well as potential adverse biomedical effects. In evaluating treatment options, families should avoid hasty decisions that may result in falling prey to unsubstantiated or even bogus claims. Until the GFCF diet is further researched, parents should consider the following before implementation: 1. While GFCF foods are more readily available, the diet can be costly, time-consuming, and more difficult in geographic areas that lack the appropriate ingredients. 2. At least one family member should accurately record food intake and review the effects of the GFCF diet on symptoms regularly with health care providers. 3. Families need plans about how to ensure dietary compliance at home and in different settings (i.e. school, home of friends or family). It is often helpful to identify another parent or professional who has implemented the diet and can offer practical advice for food preparation and compliance. 4. The child’s health should be evaluated by a professional prior to diet implementation. If the child is eligible, then health and weight should be monitored to avoid compromising nutritional status. (Elder, (2013).
The University of Rochester study found that, for the 14 children monitored, a GFCF diet didn’t result in a change in sleep habits, bowel habits, activity or core symptoms of autism. The studies should be used to arm parents with scientific evidence, so they can weigh the pros and cons before adopting a restrictive diet for their child. The hope is that parents will go into these diets with their eyes open, and even if there seems to be anecdotal improvement, that they try the child off this restrictive diet after a while to see if it actually makes a difference. Usually children with an ASD are on many interventions at the same time, and they have spurts of developmental progress. It is difficult to isolate the intervention that was critical.


Elder, PhD, RN, FAAN, J. (2013). Autism and the Gluten-Free, Casein-Free (GFCF) Diet. Retrieved November 1, 2015, from
Mari-Bauset, S., Zazpe, I., Mari-Sanchis, A., Llopis-Gonzalez, A., & Morales-Suarez-Varela, M. (2014). Evidence of the Gluten-Free and Casein-Free Diet in Autism Spectrum Disorders: A Systematic Review. Journal of Child Neurology, 1718-1727.
Rapin, I., M.D. (1997). Autism. The New England Journal of Medicine, 337(2), 97-104. Retrieved from
Widyahening, I., & Ismail, R. (2011). Is gluten free and casein free (GFCF) diet effective for individuals with autism? Med J Indones Medical Journal of Indonesia, 114-114.

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