Parents of children with autism spectrum disorders know intimately that treatment is as complex as the disorders themselves. There are educational and behavioral interventions, and medication. A new study suggests a large number of families also turn to alternative treatments, such as homeopathic remedies, probiotics and mind-body interventions, in concert with more traditional treatments.
The study, published Saturday in the Journal of Behavioral and Developmental Pediatrics, looked at use of complementary and alternative medicine -- known as CAM -- among more than 450 children ages 2 to 5 with autism, as well as 125 who had been diagnosed with a developmental delay. Forty percent of the children with an autism spectrum disorder had used some form of CAM treatment, compared with 30 percent of children with developmental delays. The children were based in California.
"CAM use is quite prevalent, especially in children with" autism spectrum disorders, said Dr. Kathleen Angkustsiri, an assistant professor of developmental and behavioral pediatrics at the University of California, Davis, MIND Institute and an author of the study. She emphasized that parents used CAM in addition to traditional, evidence-based treatments -- not as a replacement.
"There have been a lot of assumptions, in general, about why people may be using CAM, and I think that was something that was a little different about our study," Angkustsiri continued. "It showed it's not because parents don't believe in or agree with conventional treatments. They're looking for ways to complement it."
The most common types of complementary treatments were dietary supplements, followed by gluten- and casein-free diets. A small percentage of children used mind-body therapies, such acupuncture and meditation, as well as melatonin and probiotics.
But researchers also found that 9 percent of the children had been treated with some form of potentially harmful CAM.
Some had used chelation therapy, used to remove heavy metals from the body. It has been shown ineffective in treating autism -- and unsafe. Others had used treatments the researchers considered invasive, such as vitamin B12 injections. Only one child had used secretin, a drug that has been shown to be ineffective treating autism. The authors said that shows the scientific community has successfully communicated the results of clinical trials to the general public.
Parents who refused vaccines for their children or who delayed the recommended timetable for shots were no more or less likely to pursue alternative treatments for their children than those who had not, the research found. Angkustsiri admitted some surprise about that finding, saying it runs counter to broad perceptions that parents who do not vaccinate are also more likely to pursue "fringe" treatments.
Overall, Paul Wang, senior vice president for medical research at the nonprofit advocacy group Autism Speaks, said he was not surprised by the high use of CAM among children with autism, citing a larger study, published in the journal Pediatrics last year, which found that roughly 30 percent of children had used some form of CAM -- with higher usage among children with gastrointestinal issues.
"This is something that should be discussed openly," Wang said. "Neither parents nor physicians should be shying away from that conversation." Because most children in the study were also using conventional treatments, there is potential for adverse interactions with CAM.
Wang argued that the study highlights the need for greater research into CAM treatment and autism.
"We need to continue to support studies [that] look not only at safety, but whether they could have some sort of benefit," Wang said. "Unfortunately, a lot of physicians are not familiar with this area. As autism has become more and more prevalent, and as we see people educating themselves more and more, that's something we have to tackle."