Life, Animated, a new award-winning documentary about Owen Suskind, a young adult with autism, shows how his family learned to communicate and to connect with him through Disney films. It beautifully illustrates how there is no one-size-fits-all solution for families to follow. This is not always an easy message for families of persons with autism to internalize, however.
In the work that we do as a developmental pediatrician and a speech-language pathologist and intervention researcher, we see that when a child receives a diagnosis of autism, parents often look for a clear path to treatment. Usually, by the time they come to us, they already will have looked online for answers. Online, they will be faced with a dizzying array of choices for possible treatments, from essential oils to speech therapy. It can be confusing when blog posts and celebrity profiles suggest one approach for intervention while peer-reviewed scientific publications may suggest another one. When deciding between a compelling anecdote with a video on a blog versus a chart with means and standard deviations, it is not surprising that parents may choose an easier-to-digest but non-evidence-based intervention.
Many of these interventions are termed complementary and alternative treatments. They are either done in addition to conventional treatment or completely outside of it. According to the 2012 National Health Interview Survey, approximately 11.6 percent of children had been given or undergone a complementary treatment in the past year, including dietary supplements. Some of the more common treatments seen in our practices include the gluten-free/casein-free diet, dietary supplements including omega-3 fatty acids, and melatonin.
Susan E. Levy and Susan L. Hyman from the University of Pennsylvania School of Medicine and the University of Rochester School of Medicine, respectively, published a review of the evidence surrounding complementary and alternative treatments. They found that some practices have emerging evidence to support their use, and others do not. For example, one treatment that has evidence against its use is secretin, while melatonin has emerging evidence to support that it can be helpful.
Researchers from Harvard and Southwestern Vermont Medical Center examined the prevalence of parents who give complementary and alternative treatments to their children with autism. Of the 112 parents surveyed, 74 percent of children were treated with complementary and alternative medical treatments. These were not found to be harmful but not necessarily helpful either. Generally, more is known about usage rates of these treatments than their efficacy and safety.
It is understandable that these treatments are popular. Evidence-based medical treatments like speech and language therapy and behavior-based interventions may not be accessible to every family compared with complementary and alternative medical treatments. Plus, the latter give parents something to do and something to do today. It can restore a sense of control when circumstances seem so out of their control. Further, unproven non-medical treatments may seem safer, less expensive, or a faster option than medical treatments.
The increase in complementary and alternative treatments is having a real impact on kids’ health, however, as well as the relationship between families and physicians, as parents and clinicians may disagree about what powerful anecdotes say versus what the research says.
While we understand why complementary and alternative treatment options are compelling, we cannot in good conscience endorse their use. Ultimately, quality, evidence-based interventions will be most effective for helping their child. Thus, we need to bridge the gap by increasing efforts to make those options more accessible to families of all financial means and geographic locations.
Further, since complementary and alternative methods are growing in popularity, to better help families make the right decisions, clinicians need to create an open, non-judgmental space that includes a dialogue about these different paths of intervention. They cannot dismiss complementary and alternative ones out of hand or make parents feel bad for considering or using them. They do need to respectfully discuss the risks and benefits of possible treatments, suggest what may be most effective, and then partner with parents to monitor their child’s progress.
Researchers and clinicians also can help parents and caregivers make more informed decisions by making their study findings more accessible, both on- and offline. Of course, this is easier to do when clinicians and researchers, like us, work together. For instance, Dr. Roberts and her colleague, Dr. Kaiser, at Vanderbilt University studied early interventions for young children with language delays and found preliminary evidence supporting the benefits of caregiver involvement in the children’s therapies. Now this research informs how Dr. Bauer counsels the parents of children in her clinics. When they inquire if they should be involved in their children’s therapies, she can point to this research to say that there is evidence that it can be beneficial for them to be part of it.
Parents do not want to miss out on treatments that could help their child. By working together in a more intentional way, clinicians, researchers and parents can make a treatment plan individualized to each child that can best help her or him thrive
Increasing parents’ access to medical interventions cannot change overnight, but the crucial first step can be for clinicians and researchers to acknowledge the full range of interventions and talk parents through them in a non-judgmental way.