Dear Mr. Cukan,
Thank you for your “consumer beware” advice in your article (“Companies may face legal action for false claims about products to cure autism,” Upi.com, April 25, 2014). You are right: false and misleading claims should result in legal action to protect the consumers. We are writing to give more depth to the positive side of this report — that there are therapies that are considered to be effective for individuals diagnosed with an Autism Spectrum Disorder (ASD). Please note that our organization, the Association for Science in Autism Treatment, was quoted in the Food and Drug Administration’s (FDA’s) original Consumer Update.
You report that a number of companies have been warned by the FDA for making misleading claims about products and therapies claiming to treat or cure autism. To support this account, you sought accuracy of information from FDA’s national health fraud coordinator, Gary Coody, to avoid inadvertent error or misinterpretation. For that, we applaud you. You correctly reported the FDA’s warning against bogus autism treatments, bringing attention to some of the most dangerous therapeutic derivatives touted by the media.
To complement your cautionary analysis, we would like to direct consumers to the U.S. Government’s conclusions about effective autism treatment. For example, the Centers for Disease Control (CDC) states, “Research shows that early intervention treatment services can greatly improve a child’s development… A notable treatment approach for people with an ASD is called Applied Behavior Analysis (ABA).” In October 2009, the Maine Department of Health and Human Services in partnership with the Department of Education published a comprehensive review of the state of the evidence for autism intervention. This report gives the common professional understanding of research and evidence-based practice for autism.
In the Maine report, a wide variety of interventions were evaluated for the state of the evidence on the individual therapies. For example, while Early Intensive Behavioral Intervention was rated as having “Established Evidence,” Hyperbaric Oxygen Treatment was rated as having “Preliminary Evidence,” and Intravenous Chelation using Edetate Disodium was rated as having “Evidence of Harm.”
It is frightening to think that sellers of dubious products, many with doubtful benefits, boast that they are “FDA approved.” It can be difficult to figure out which therapies have the FDA’s critical stamp of approval — or what advertised therapies have actually been vetted for use with the autism population. It is especially egregious that families may be directed to harmful treatments when other treatments proven to be effective are readily available.
We thank you for recognizing that the only suitable use for some autism treatments is as the basis of a lawsuit.
Leanne Tull, MADS, BCBA, and Eric V. Larsson, PhD, LP, BCBA-D
Association for Science in Autism Treatment
References:
Brown, M. J., Willis, T., Omalu, B., & Leiker, R. (2006). Deaths resulting from hypocalcemia after administration of edetate disodium: 2003-2005. Pediatrics, 118(2), e534-e536.
Centers for Disease Control (2014). Autism Spectrum Disorder. Available at: http://www.cdc.gov/ncbddd/autism/treatment.html#ref (accessed May 5, 2014)
Maine Department of Health and Human Services & Department of Education (2009). Interventions for autism spectrum disorders: State of the evidence: Report of the children’s services evidence-based practice advisory committee. Available at: http://www.maine.gov/dhhs/ocfs/cbhs/ebpac/asd-report2009.pdf (accessed May 2, 2014).
