Dear Ms. Pearson,
Thank you for your straightforward report on the findings of a recently published study in the Journal of Behavioral and Developmental Pediatrics, indicating that the use of complementary and alternative medicine (CAM) is common in families of young children with both autism and developmental disabilities (Huffington Post Online, January 11, 2014). CAM has been defined by the National Center for Complementary and Alternative Medicine (NCCAM) as “a group of diverse medical and health care systems, practices, and products that are not presently considered to be part of conventional medicine” (NCCAM, 2000). By definition, CAM is a group of diverse treatments and as such, there are varying levels of scientific evidence and safety to users within the group. Pediatricians would often be one of the first points of contact for the families of young children with autism; it is therefore critical that pediatricians be familiar with both evidence-based treatments, as well as CAM.
Conducting a cursory Internet search of “autism treatment” will result in a staggering amount of information available to parents who are engaged in the daunting and overwhelming process of handling an autism diagnosis. Given that currently there are over 450 advertised treatments for autism, it is not altogether surprising to learn that the use of CAM is so common. The results of the current JDBP study yield a few interesting points regarding the specific use of CAM in families with autism, chiefly that 1) parents report using CAM in addition to traditional, evidence-based treatments, not as a replacement, 2) parents report believing in “conventional treatments,” but are looking for ways to complement them, 3) the most commonly used complementary treatments included dietary supplements, followed by gluten and casein-free diets, 4) nine per cent of respondents reported that their child had been treated with some form of potentially harmful form of CAM, and finally, 5) that parents who refused vaccines for their children or those who delayed the recommended vaccine schedule were no more or less likely to pursue alternative treatments for their children than those who had not. We would like to share some thoughts about these findings.
The items we previously referenced were identified as concerning for a few reasons. First, parental reports might not account for the child’s full treatment history, and second, these reports may underestimate or misrepresent treatment history. While it is encouraging that parents report that the use of CAM is to “complement” the “traditional, evidence-based” treatments, there are also some concerns surrounding this use as well. In theory, a particular CAM will be used in addition to evidence-based treatment and the two will work in conjunction to ameliorate symptoms of autism. However, it is not as simple as concurrently using two treatments; in fact, the addition of CAM may compete with the demands already in place with the traditional therapy. Careful data collection would be required, and is suggested for practitioners to ensure that introduction of the CAM had the desired effect. Furthermore, it is important to note that CAM may be pursued at the expense so or in lieu of “traditional, evidence-based” treatment.
You reported that the authors state these results indicate “the scientific community has successfully communicated the results of clinical trials to the general public.” However, we are unsure about whether or not the results truly support such an assumption. While it certainly provides interesting new insights into the use of CAM for children with autism and also about some beliefs and patterns of responding of those families, it is only one of a few studies on the subject, and participants were not asked whether or not available research guided their choices. It is also important to bear in mind that these results are based on a relatively small sample size of families in California, and that further research should be conducted.
In your article, Paul Wang, senior vice president for medical research at the nonprofit advocacy group, Autism Speaks, says of CAM, “We need to continue to support studies [that] look not only at safety, but whether they could have some sort of benefit.” We agree with this statement and would encourage proponents of various CAM treatments to conduct research about these treatments, their effects and their interactions with other, more traditional treatments. The burden of proof should fall on CAM proponents to scientifically demonstrate their claims and to share those findings accurately. Additionally, we strongly encourage pediatricians to investigate these treatments and remain up to date on the most current literature as it becomes available, so that they can best advise parents on CAM interventions and maintain the safety of their patients with autism.
Thank you for an excellent article. In 2012 the Association for Science in Autism Treatment (ASAT) published Autism Treatment Reviews for Physicians: The Take Home Message (https://asatonline.org/resources/articles/autismtreatment), which summarizes the evidence available in the medical literature, including the American Academy of Pediatrics (AAP) guidelines, to help medical professionals manage their patients with autism. We encourage you to access this and other information when preparing future articles about autism and autism treatment, as these resources may reach families and professionals who read your work. When journalists share the results of scientific studies, they raise awareness and help to disseminate evidence-based information so that parents can become more well informed and savvy consumers.
Elizabeth Callahan, BA, BCaBA and David Celiberti, PhD, BCBA-D
Association for Science in Autism Treatment
Akins, R.S., Krakowiak, P., Angkustsiri, K., Hertz-Picciotto, I., & Hansen, R.L. Utilization patterns of conventional and complementary/alternative treatments in children with autism spectrum disorders and developmental disabilities in a population-based study. Journal of Behavioral and Developmental Pediatrics, 35(1), doi: 10.1097/DBP.0000000000000013.
Halliday, P., Houston, Z., Kinney, E., & Myers, S.M. (2012). Autism treatment reviews for physicians: The take-home messages. Science in Autism Treatment, 9(2), p. 1-6.
National Center for Complementary and Alternative Medicine (2000). Expanding horizons of healthcare: five year strategic plan 2001-2005. Washington, D.C.: U.S. Department of Health and Human Services.