By: Lindsey Knopf
Having a child diagnosed with autism and/or other developmental delays has a profound and wearisome effect on the family. Over the years, the prevalence of autism spectrum disorders has increased dramatically and there is still little known about the causes. Multiple genetic components as well as currently unknown environmental factors probably play a role in the development or presentation of the disorder (Autism Speaks). The diagnostic criteria for ASD are broad. Symptoms vary between individuals and change with the acquisition of developmental skills, making it impossible (at this point in time) to prescribe a single best treatment package for all children with ASD (National Institute of Mental Health). Because of the ambiguity associated with autism, many parents don’t know where to turn for effective treatment. Some become desperate enough to try almost anything that has been claimed to be effective, despite a lack of support from scientific evidence.
Best outcomes for children with autism almost always involve early intensive behavioral therapy (i.e., ABA), but it takes time to see improvements and there is no accurate prognosis. Urgency to find a treatment where positive results are seen instantly after diagnosis has led many parents and professionals to implement “alternative” therapies that are not yet supported by evidence (Lerman et al., 2008). These include many biological Complimentary and Alternative Medicine (CAM) treatments such as, Hyperbaric Oxygen Therapy (HBOT), gluten-free and casein-free diets, dietary supplements, immune therapies, and nonbiological CAM therapies, which include sensory integration therapy, “rebirthing”, dolphin therapy, facilitated communication and many others that fall into the realm of pseudoscience. Pseudoscience involves claims of scientifically supported evidence, which is in fact, lacking or misinterpreted. This usually leads to ineffective treatment that can be wasteful, if not harmful to the family and child. Since the pseudoscience is so commonly practiced with ASD, Behavior Analysts must carefully evaluate therapeutic claims, assess the risks and benefits, and inform their clients of their findings.
Complementary and alternative medicine treatments are commonly used for children with autism for reasons such as perception of safety, recommendations of others, to have more control over the therapies selected, and because of hope for a cure (Levy & Hyman, 2008). However, all treatment selections should be evidence-based. Ideally, this should include peer-reviewed studies with well-defined populations, randomized, large samples, control for confounding factors, and the use of validated outcome measures (Myers & Johnson, 2007). Unfortunately, most CAMs are merely based off of isolated controlled studies, uncontrolled studies, case reports or theories. The few CAM treatments that have been appropriately studied have demonstrated that secretin is not an effective treatment for ASDs and that facilitated communication is not a valid treatment for ASDs (Myers & Johnson, 2007).
Millward et al. (2008) did an extensive literature search attempting to find randomized control trials of gluten and/or casin free diet as an intervention to improve symptoms of autism (i.e, behavior, cognitive, and social functioning). Only 2 controlled studies (with multiple participants) were found and they had conflicting results. Not only is there a lack of evidence to support a GFCF diet as an effective intervention for people with autism, but there were also no studies found that reported on adverse outcomes or potential disadvantages of a GFCF diet. Potential benefits are improvements in communication, attention, and hyperactivity following dietary intervention. Potential disadvantages include increased food refusal as well as spending extra time and money without getting a reduction in problem behavior (Irvine, 2006).
Lerman and his colleagues (2008) evaluated the effectiveness of Hyperbaric Oxygen Therapy for 3 children with autism. They demonstrated that HBOT did not improve task engagement or decrease problem behavior beyond that provided by ongoing behavior analytic services, indicating that the therapy was not worth the associated costs (i.e., time, expense, and potential physical side effects) for these children. Although there is some research that suggests improvements in behavior, attention, and cognition following HBOT, further research is needed to extend to a larger population and to control for confounding variables.
Most CAM treatments have not been adequately studied and lack scientific evidence to support or refute their use. Many popular interventions have yet to be investigated in any way with ASD and most all warrant further research. When families elect to use CAM, they should be encouraged to seek additional information, especially when treatments are based on overly simplified theories and claim to be effective for multiple, unrelated symptoms, when they claim that children will respond dramatically and some will be cured, when anecdotal data is used rather than carefully designed studies to support claims for treatment, if there is a lack of peer-reviewed references, or if the treatments are said to have no potential adverse side effects (Myers & Johnson, 2007). Extraordinary claims demand extraordinary proof. Claims should be based on objective evidence. Society, however, seems to place lesser standards on social sciences and assumes that it is impossible to reliably change human behavior. Scientists deal with probability rather than possibility. We aim to predict and control our subject matter. It is difficult for a non-specialist to identify pseudoscience in unfamiliar disciplines.
If a parent expresses interest in unproven supplemental treatments for his or her child with autism, it is the behavior analyst’s duty to warn them about the lack of scientific evidence of the efficacy of certain procedures. This could not only save a family in need of positive support, valuable time and money, but also help them avoid physical danger. Some treatments such as chelation therapy and “rebirthing” are dangerous and have caused death. However, it is also necessary to be empathetic about the family’s urgency to find relief. “As parents and professionals continue to try new unproven therapies for autism, practitioners with expertise in behavior analysis can assist by obtaining objective, quantifiable data on outcomes for individual children” (Lerman et al., 2008). A therapy that lacks scientific efficacy and has no negative side effects should be accepted if it attenuates a family’s stress and grief. Parents are entitled to do what they want with their children as long as it does not hinder the child’s development. However, using pseudoscientific treatments that attempt to “get the autism out of a person” or using them in lieu of a treatment for autism that has lots of empirical support for its efficacy (i.e., ABA) should be discouraged. A father of a child with autism, James Lieder (2004), discloses this statement, “I stepped into ‘alternative’ medicine up to my neck and waded out again, poorer but wiser. I now realize that the thing the ‘alternative’ practitioners are really selling is hope—usually false hope—and hope is a very seductive thing to those who have lost it. It is really not surprising that people will buy it even when their better judgment tells them not to do so.” True hope should come from effective treatment and observable improvements, not social influence.
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National Institute of Mental Health. (n.d.). Autism Spectrum Disorders. Retrieved April 4, 2010 from, http://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-pervasive-developmental-disorders/index.shtml