Written by Daniel Mruzek, PhD, BCBA-D
A colleague recently passed along a website that illustrates how Maine’s recently published Interventions for Autism Spectrum Disorders: State of the Evidence can be used as a resource for evaluating potential treatment options (see Lora Perry’s summary on p. 4 of this issue). The website is maintained by a company called Nourish Life and showcases a nutritional supplement called Nourish Life Speak™, “a nutritional product designed and formulated to support normal speech development and maintenance.” The “starter kit” for this supplement costs $49.95 + shipping and handling.
The website contains examples of common proclamations often found in the marketing of non-validated treatments, including lavish testimonials, boldly proclaimed (yet subtly qualified) benefits, science-like phrases and vague references to research findings. One claim in particular on the website caught my eye: “New Study Shows 97% of Children Improving with Omega-3 and Vitamin E Nutritional Formulation”. Indeed, this new study (Morris & Agin, 2009), published in the journal Alternative Treatments and linked at the product website, reports that 181 out of 187 participating families reported “dramatic improvements in a number of areas, including speech, coordination, eye contact, behavior, sensory issues, development of pain sensation, and GERD [gastroesophogeal reflux disease] symptoms” following use of Vitamin E and polyunsaturated fatty acid supplements (p. 36). Though these results seem compelling at first glance, weaknesses in this retrospective study greatly limit conclusions that can be derived from it. The most important features of good treatment research, including random selection of study participants and use of a “no treatment” comparison group, were not used. Rather, the study participants were reportedly parents of children with apraxia who provided, via a questionnaire on a web site or “personal communication,” an after-the-fact opinion regarding their use of a supplement. It is reasonable to assume that people voluntarily responding to an on-line questionnaire at a particular web site or communicating to an expert in the field of nutritional supplements may have an especially strong and/or unique opinion to share. For this reason, it is impossible to know how a more representative group might have rated the pills.
No mention is made of an assessment of the reliability of the data, such as blind “double-checks” to ensure that the questionnaire results are tallied properly, or attempts to ensure the validity of the data, such as examining whether particular responses on a web-based questionnaire are actually associated with improvements in a child’s health or behavior. There is no indication that participant histories, such as other interventions they used with their children, are accounted for or even recorded.
Furthermore, the study includes very little information regarding the nature of the questionnaire or personal communication data (e.g., response to multiple-choice questions that may bias a response, open-ended questions that may be hard to quantify or characterize) or how these data were analyzed. In fact, the description of the study methodology (how it was conducted) was so sparse, that independent researchers would not be able to replicate it to verify the results.
The authors briefly acknowledge these limitations: “Many of our conclusions are speculative in the absence of controlled clinic trials” (p. 41). In other words, despite the touting that the study receives at the Nourish Life Speak™ website, possible benefits derived from the supplement remain unproven.
By the way, a disclaimer noted on the first page of the Morris and Agin study indicates that the first author maintains a patent application for a nutritional formula licensed to Nourish Life, a relationship that further highlights the need for objective measures and other key scientific controls to measure the validity of the research.
Faced with a variety of marketing tactics, how can parents confidently investigate possible treatments for their children? One way is to ask the marketer or practitioner, “What is the scientific evidence that this treatment is effective?” A legitimate marketer or practitioner will appreciate the question and accurately report the state of the science. However, some may not be forthcoming in their response and, instead, rely on testimonials and often misleading research claims to state their case. A second strategy parents can utilize is speaking to a trusted professional with an understanding of the scientific background of the treatment in question. The professional can report on the state of the scientific evidence with regard to a treatment under consideration or recommend others who are more knowledgeable in a specific area.
Maine’s recently published Interventions for Autism Spectrum Disorders: State of the Evidence highlights a third option that, like the Scientific Summaries On Interventions On Autism available at the ASAT website, may be viewed as a “quick reference” approach to investigating new treatment options. For example, Omega-3 Fatty Acid supplements were judged by the Maine panel as having insufficient evidence, because available scientific data are limited in scope and inconclusive in findings (p. 33). Given that the Nourish Life Speak™ nutritional supplement appears to have Omega-3 Fatty Acid as a key ingredient, a parent can use this information as an important consideration in evaluating the claims made by the company marketing this product.
Parents have a right to know the “state of the science” for treatments they are considering for their son or daughter with autism. Reports such as the Interventions for Autism Spectrum Disorders: State of the Evidence provide a quick means of cross-checking information provided to them about a particular treatment. Parents do not have to rely on the information provided by merchandisers for decisions regarding treatments for their children and their hard earned dollars – whether merchandisers provide that information on a web site or through “personal communication”!
Do you have a particular treatment topic that you would like considered for a future edition of Science Corner? Feel free to send your ideas to Daniel_Mruzek@urmc.rochester.edu.
References
Maine Department of Health and Human Services & Maine Department of Education (2009). Interventions for Autism Spectrum Disorders: State of the evidence. Portland, ME: University of Southern Maine.
Morris, C. R., & Agin, M. C. (2009). Syndrome of allergy, apraxia, and malabsorption: Characterization of a neurodevelopmental phenotype that responds to omega-3 and vitamin E supplementation. Alternative Therapies, 15, 34–43.
SpeechNutrients™ by Nourish Life . (n.d.) Nutritional support for health speech development. Retrieved from https://lifetrients.com/
