Are the parents of children with autism redefining what constitutes standard treatment in medicine? In a new study, researchers found that parents of children diagnosed with an autism spectrum disorder or developmental delay frequently chose complementary and alternative medicine treatments. The University of California, Davis, MIND Institute researchers also discovered that those parents with higher levels of income and education were the ones most likely to use both conventional and complementary approaches when caring for their young children with autism or other developmental delays. Their research appears online today in the Journal of Behavioral and Developmental Pediatrics.

"In our Northern California study population, it does not appear that families use complementary and alternative treatments due to the lack of availability of conventional services," said Dr. Robin Hansen, chief of the Division of Developmental Behavioral Pediatrics in the UC Davis School of Medicine. "Rather, they use the treatments in addition to conventional approaches." Yet these approaches do not include a single Food and Drug Administration-approved medical treatment for the core symptoms of the disorder. "The behavioral and educational interventions for autism have a strong evidence base and [are] well accepted as the most effective treatments for autism," Kathleen Angkustsiri, assistant professor of developmental and behavioral pediatrics at UC Davis, told Medical Daily in an email. "Our study suggests that parents use CAM in addition to (as opposed to instead of) well-established treatments. Although we did not specifically ask them why they chose to use CAM, this finding would suggest that even in the presence of FDA-approved treatments, families would still choose to use CAM."

More Than One Third Of Adults Use CAM

Complementary and alternative medicine (CAM) is the term for medical products and practices that are not part of standard care, which is practiced by medical doctors, nurses, and some others in the healthcare profession. In the National Health Interview Survey of 2007, the most recent statistical year, over one third of all adults (38 percent) reported using CAM sometime during the previous 12 months. The same survey found that 83 million adults spent nearly $33.9 billion on CAM, a significant portion of the total out-of-pocket expenditures on health care. In short, many Americans are investing not only their faith but also their honest cash in non-standard medicine and alternative treatments in an attempt to coax a positive outcome from a negative circumstance. Naturally this raises many questions, including whether or not such treatments might be recognized as standard services reimbursed under both private and government-sponsored insurance plans.

The cause of most neurodevelopmental disorders, including autism, is not known, and so these conditions have no cure. Meanwhile autism spectrum disorders (commonly referred to as ASD), which are characterized by repetitive behaviors, difficulties in social interaction, and often cognitive disability, affect approximately one in 88 children in the U.S. Many of these children suffer from an array of symptoms that make the daily lives of their families nearly impossible to endure. It is perhaps for this reason that parents often seek CAM treatments. To investigate such practices, Hansen and her team of researchers conducted a Childhood Autism Risk from Genetics and the Environment (CHARGE) study, which enrolled 600 children between the ages of 2 and 5 with autism and developmental delay.

Of the total participants, 453 were diagnosed with an autism spectrum disorder (ASD) while 125 had been diagnosed with developmental delay (DD). The researchers found the rate of CAM use more common among children with autism (40 percent) when compared to children with other types of developmental delay (30 percent). The most common CAM treatment? Dietary supplements were used by 24.7 percent of children with autism and 18.4 percent of those with developmental delay. And although the researchers hypothesized that severity might be a deciding factor for CAM use, they found that low-functioning children with ASD were neither more nor less likely to receive CAM than high-functioning children.

Unsafe Alternative Treatments

Virtually all children in both groups received one or more forms of conventional services, though use was higher among ASD children: they were twice as likely as those with DD to have seen a psychologist, six times as likely to have participated in social skills training, and nearly three times as likely to have participated in a behavior modification program. Children within the DD group, though, were nearly twice as likely to have ever received conventional medication for a chronic medical problem, 48 percent as compared to 30 percent among the ASD children, and more likely to have received physical therapy, nutritional consultation, home nursing, and vision services. In particular, nearly seven percent of the ASD children were on the gluten-free/casein-free diet, which eliminates from the total nutritional intake two proteins, gluten and casein, commonly found in wheat and dairy products, respectively. "We were pleased to find that most families utilizing CAM therapies were choosing ones that were low risk," Angkustsiri said. This diet clearly remains somewhat popular, despite the results from a 2010 study conducted at University of Rochester which offered evidence that eliminating gluten and casein from the diets of children with autism had no impact on their behavior, sleep or bowel patterns.

However, the researchers were disheartened to discover that about four percent of the parents had incorporated alternative treatments they deemed potentially unsafe, invasive, or unproven, such as antifungal medications, chelation therapy, and vitamin B-12 injections. Add to this the possibility that parents under-reported their actual use of CAM and possibly more so in instances where they had adopted “aggressive” forms of CAM. After all, the information used in this study was gathered by doctors who questioned each parent about the treatments they chose for their children and previous authors, the researchers note, have demonstrated that parents may be less likely to disclose use of alternative medicines to a physician.

"Our study suggests that pediatricians and other providers need to ask about CAM use in the context of providing care for children with autism and other developmental disorders, and take a more active role in helping families make decisions about treatment options based on available information related to potential benefits and risks," said Dr. Roger Scott Akins, chairman of the Division of Neurodevelopmental Pediatrics at Naval Medical Center Portsmouth, Va. Meanwhile, Irva Hertz-Picciotto, professor of public health sciences and principal investigator for the CHARGE study, stated, “Of course it is reasonable for parents to keep searching for ways to help their children, when there are few effective treatments and none that can help every child.”

Source: Akins RS, Hansen R, Herz-Picciotto I, Krakowiak P, Angkustsiri K. 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. 2014.