A Survey to Assess Parent Perspective of the Impact of a Gluten‐Free, Casein‐Free Diet on Their Child’s Symptoms of Autism Spectrum Disorder

Abstract

With the prevalence of Autism Spectrum Disorder (ASD) rising (approximately 1 in 45)1 treatment for the disorder becomes even more important. Families turn to both traditional and alternative medicinal sources for help. The Gluten‐Free, Casein‐Free (GFCF) diet is an example of an alternative therapeutic approach. Study Aims: Our aims were to design and begin initial validation of a survey to evaluate the use and efficacy of the GFCF diet in children with ASD with concurrent gastrointestinal (GI) symptomatology. We also aimed to assess feasibility of the survey in the target population through piloting the survey. This is the first step in determining association of the GFCF diet in children with ASD. Methods: A survey was developed with expert review, meant for completion by parents and primary caregivers of children with ASD. The survey content included demographics, treatments used, GI symptoms (as measured by a modified Rome III parent report form), food allergies and intolerances, and frequency of aberrant behaviors (as measured by the Aberrant Behavior Checklist). Questions regarding diet use (specifically gluten‐free diet, casein‐free diet, or GFCF) were included in the treatment modalities and as well as questions regarding compliance and length of time used. The survey was advertised to our target population and 38 completed responses were obtained for a pilot study. Results: The pilot study revealed questions which were not clear to the target population and required modifications. Data from the responses revealed 14/38 participants who attempted the GFCF diet or its variants with their child, 11 for 3 months or greater. Number of food intolerances was heightened among those who used the diet or its variants. Heightened ABC irritability subscores were noted among those with GI symptoms. Conclusions: The pilot survey developed for this project suggests that the use of the GFCF diet in children with ASD is not only common but also might be a useful therapeutic agent. The need for further validation of the tool is paramount.