Complementary and Alternative Medicine Use in a Large Pediatric Autism Sample

Discussion

We found substantially higher rates of CAM use in children who have classic autism compared with children and youth who have Asperger’s or PDD-NOS. Parents also reported higher rates of CAM use if their child had certain co-existing conditions, specifically GI symptoms, seizures, or evidence of behavior problems, although children taking psychotropic medications had lower use of special diets. This report extends previous work related to CAM usage among children and adolescents who have ASD^4–6 by documenting associations of CAM use with co-existing medical conditions.

The CAM use in this clinical population is similar to that of children and adolescents who have other chronic health conditions, although the rates reported are somewhat lower than in other studies reporting on children with ASD.^4,5 Our findings may better reflect the prevalence of CAM use in similar populations because interest in the topic may bias samples of volunteers for online surveys. Furthermore, our sample is fairly young, with less exposure to CAM. Kemper et al³ reported rates varying from 30% to 70% among children who have chronic conditions. In another study, 74% of 112 children with ASD in a referral practice reportedly use CAM, especially dietary supplements and additions.¹⁰ In 2 pediatric practices, 95% of children used CAM, mainly dietary treatments, melatonin, chiropractic therapy, antifungal agents, and sensory integration.¹¹ The initial medical history regarding CAM use did not specify melatonin or sensory integration as CAM treatments, thus leading to lower rates of identification in this population. More than 30% of 284 newly diagnosed children with ASD used CAM; 9% of them used potentially harmful CAM, such as chelation, antibiotics, or excessive amounts of vitamins.⁵ In our population, a small percentage reported using CAM treatments that have been identified as potentially harmful (chelation reported in <4% of children). In the report by Levy et al, surprisingly, Latino children had much higher rates of CAM use than did white or African-American children. Our findings are similar to those of Valicenti-McDermott et al,⁶ in a much smaller sample, in which reports of food allergies and behavior problems were associated with increased CAM use.

How these clinical characteristics of children affect the use of CAM is unclear, and our data do not directly address mechanisms underlying use. Parents of children who have classic autism may view their child’s condition as more severe and seek alternative treatments to complement other care the child receives. Families seek to address problematic behaviors or symptoms by using CAM; therefore, parents whose children have GI symptoms may particularly try both dietary changes and other CAM treatments to improve their child’s nutrition and symptoms. Dietary and nutritional concerns are among the most prominent questions that parents ask about their children who have autism. Families whose children experience the feeding problems and food aversion that are common among children with autism might tend toward nutritional supplementation either to compensate for perceived dietary deficiencies or as a primary treatment. Why children who have seizures have higher rates of CAM use is unclear, although the presence of seizures may also indicate more clinical severity to parents, encouraging them to seek alternative therapies. Parents whose children use psychotropic medications, conversely, may feel that they have active and somewhat effective treatments and turn to alternative treatments less than other families.

This study has several limitations. Essentially all information comes from parent report, without having confirmatory information from other observers or measures of the child’s findings or health status. The registry questions regarding CAM did not include a number of commonly used CAM therapies, such as melatonin, herbal remedies, massage, or sensory integration. Thus, this study may have underestimated CAM use. Families participating in the ATN registry represent a population with generally more access to large medical centers in large metropolitan areas and may not be as representative as those with transportation barriers to receiving care. Families participating in the ATN registry may also represent a group more willing to participate in clinical research and more oriented toward conventional medicine, which may not be as representative of CAM users in general. Several of the measures used indicate symptoms rather than provide actual indicators of specific conditions (eg, the GI symptom questionnaire and the CBCL). As a cross-sectional study, the data do not allow any determination of cause and effect. For example, the study cannot determine whether GI symptoms in children led to higher rates of CAM use or alternatively whether higher rates of CAM use caused more GI symptoms. It will help to develop better longitudinal measures that will allow determination of the effects of CAM use on key child outcomes.

This study provides strong evidence associating certain medical conditions with differential use of CAM among families raising children with ASD. As with other CAM use, it will help to determine more about the potential synergistic effects of CAM with medical treatments as well as ways that CAM use may interfere with improvement in medical conditions. The review by Huffman et al¹² also documents the need for substantially more study of the efficacy of CAM among children who have neurodevelopmental disabilities. The common CAM treatments (ie, special diets, vitamin and nutrient supplements) have the potential to affect conventional treatments recommended by practitioners operating in the medical home model, and primary care providers should inquire about and be aware of CAM use in their patients and families.¹³ The American Academy of Pediatrics has called for pediatricians to establish a dialogue with families surrounding CAM, encouraged education of both consumers and clinicians regarding CAM, and sought better evidence of CAM treatments to guide clinical practice.¹⁴ Our study points out the importance of understanding more about parents’ motivations to use CAM and especially how their children’s other health conditions influence those motivations.