Do Physicians and Parents Communicate about Complementary and Alternative Treatments for Children with Autism Spectrum Disorders?

Background:  Complementary and Alternative Medicine (CAM), including dietary interventions, are highly prevalent in children with Autism Spectrum Disorders (ASD).   Parent surveys estimate that 52-95% of these children are treated with CAMs and diets (Harrington et al, 2006; Wong et al. 2006).While CAM use among this population appears ubiquitous, no data exist on how autism specialists document the topic or discuss use of CAMs or specialty diets in their clinical encounters with these families.

Objectives:  To examine: a) the prevalence of CAMs and dietary treatments; and b) the concordance between parent - and clinician documentation of CAM and diet use in children with ASD.

Methods: Data from 160 children, ages 2 to 16 years (M = 5.6y; SD = 3.2y), who were enrolled in a local-registry project at an urban outpatient autism center, were used for this study. All children in this study have an ASD diagnosis confirmed by a clinician and the Autism Diagnostic Observation Schedule (Lord et. al, 2002). Parent’s documentation of CAM and diet use in their children was gathered from a custom form which captured up to 6 dietary and 15 CAM treatments. Clinician documentation of such was gathered via chart review from appointments between 2008 and 2010. Bivariate analyses were employed to examine demographic differences between children that were and were not using these treatments. Positive predictive value (PPV) was calculated to examine the proportion of subjects using CAM/diets via parent-report that were also documented by clinicians.

Results:  A total of 23 (15%) and 24 (15%) parents reported CAM and/or diet use among their children, respectively. Of these, 19 (47%) were only using 1 CAM or diet, 13 (32%) were receiving 2, and the remaining 8 children were using 3 or more (max = 13). The most common CAMs and diets reported by parents were vitamins, and gluten- and casein-free diets (both n=14), respectively. No demographic differences (age, gender, race/ethnicity, education) were found between children using CAMs compared with those children who were not. However, children on specialty diets were significantly younger than those not receiving the intervention (t = 2.87, p < .01). Of those with parent-reported CAM use, 60 % was also document by clinicians. For children using a specialty diet, 54% was reported by clinicians. This resulted in a PPV of 56% and 54% for CAM and diets, respectively.

Conclusions:  Prevalence of CAMs and dietary treatments were far less than those reported in the literature. However, these data are consistent with those collected by Coury et al. (2010, 2011) using a similar, albeit, much larger sample.  Low concordance between clinicians and parents was observed when the parent reported CAM and/ or dietary intervention. Taken together, these findings indicate that a substantial proportion of children may be being treated with CAM and/or diets either without the clinician’s knowledge or documentation of such. This could potentially lead to missing harmful treatments and/or interactions using current or prospective medical intervention by the treating provider or other providers who rely on this documentation.