Persistence of Complementary and Alternative Medicine (CAM) Use In ASD

Background:  Complementary and alternative medicine (CAM) treatments are widely used as an adjunct to conventional medical treatment for many conditions.  CAM treatments are often recommended by parents, medical providers, and paraprofessionals as potential components of an overall treatment plan but their therapeutic effects have not had careful evaluation.

Objectives:  

The objective of this study is to determine characteristics surrounding CAM use in a large ASD registry, and identify factors associated with the ongoing use of CAM treatments including ASD diagnosis, type of CAM and ongoing use of CAM treatments.

Methods:  

The study population consisted of children and adolescents ages 2 – 18 years entered in the Autism Treatment Network (ATN) Registry.  The ATN collects data on children with ASD at fourteen sites across the US and Canada.  Children with a diagnosis of ASD (autism, Asperger disorder, or PDD-NOS), as determined by comprehensive multidisciplinary evaluation, including ADOS, were included in this analysis.  Upon entry into the registry, parents completed a medical history questionnaire that includes questions about use of CAM treatments, GI symptom inventory, Children’s Sleep Habits Questionnaire (CSHQ), and demographic data. Longitudinal data are collected through annual visits or by phone or mail contact with the family.

Results:  Special diets were the most frequent form of CAM treatment. Overall, 449 (18%) of 2,489 enrolled children were on special diets as part of their treatment plan.  Data at 1 year follow up are available for 568 children.  Of these, 106 (19%) were on special diets with non-significant variation by ASD type (autism, 16%; Asperger disorder. 11%; PDD/NOS, 14%). The most common diets were “other” (64%), casein free (48%), and gluten-free (47%).  At follow up, the most common diets were “other” (61%), gluten free (50%), and casein free (49%). Of the 568 children with follow-up data, 45 (8%) children not on a special diet at baseline were on a special diet at their first annual visi (p<.0001).  Conversely, 25 of the children on a special diet at baseline had discontinued by their first annual visit (p<.0001). Of the 568 children, 57 children not receiving CAM treatments at baseline were receiving CAM at their first annual visit (p<.0001).  Conversely, 36 of the children receiving CAM at baseline were no longer receiving CAM at their first annual visit (p<.0001). 

Conclusions:  

CAM treatments in the form of special diets are commonly used.  Families appear to persist in use of CAM, with 5-10% of CAM families discontinuing use annually.  A similar percentage of families not using CAM will begin use over the course of a year, most of these using special diets.  Health care providers should be aware of the use of CAM among families with a child with ASD, and the trend for families to add or drop these treatments over time.   Educational efforts are important for child health providers to monitor the nutritional concerns of this large group of children.

Support from ATN-CRT-07-02 (Autism Speaks) and UA3MC11054 (MCHB).