Here we provide a brief profile of a selection of AutismOne speakers. Please note some red flags worth considering as you assess the accuracy and validity of their messages.
- Many are not experts in the topics they speak about. It is, of course, not a requirement to be an expert to speak about something, even to speak about it knowledgeably. However, if non-experts disagree with experts and scientific consensus, they require very strong evidence to back up their argument. Demand that evidence.
- Many are trying to sell you something. This does not automatically imply that someone is wrong. Obviously, there are many people in the world who sell products that do exactly what they claim their products do. However, when someone is selling a product, consider the motives and the bias and approach their claims skeptically, especially if those claims are in disagreement with existing evidence.
- Many are promoting ideas that may have plausibility and may have an effect, yet have not been demonstrated to be both safe and effective (the gold standard for any intervention). It is unethical to promise a result that has not yet been demonstrated. It is a violation of informed consent to be dishonest about the known risks and benefits of a treatment. This is discussed in more detail here at Science-Based Medicine. Ethics demands that parents must be appropriately informed about both risks and benefits to any strategy. Beware of claims that sound too good to be true or do not adequately address both risks and benefits.
- Many rely exclusively on testimonials and anecdotal evidence. While these can provide insight into topics worthy of study, they are not reliable forms of evidence on their own. Personal stories are subject to many types of confirmation bias, as described here. This is why we demand evidence from properly designed studies to control for bias. If these studies haven’t been done, it is ethical to be transparent about where evidence is lacking, as well as the evidence that exists.
Dr. David Gorski sums up the issues with testimonials and anecdotal evidence for autism “treatments” in this article: “The antivaccine movement and “autism biomed” versus “outgrowing” autism“.
A commonly misunderstood aspect of autism and autism spectrum disorders (particularly by antivaccinationists and believers in the quackery known as “autism biomed”) is that autism is not a condition of developmental stasis. It is a condition of developmental delay. Autistic children can and do exhibit improvement in their symptoms simply through growth and development. However, parents who subject their children to “autism biomed” quackery of the sort championed by Jenny McCarthy and others seem to view autism as a condition of developmental stasis. That’s why they so easily and predictably attribute any improvement in their children to whatever quackery du jour they are using on them. It’s also why, in order to determine whether a given intervention in autism has any real effect, randomized controlled trials are required. Indeed, it’s not so difficult to see why, if you take into account the widespread belief that autistic children do not improve, along with parents’ imperfect human memories riddled with confirmation bias, confusing correlation with causation, and other confounders like regression to the mean, so many parents believe that “autism biomed” treatments have actually helped their children. Moreover, improvements observed in autistic children tend to be uneven, with periods of little change interspersed with periods of rapid development.
Stay tuned for info on each day’s schedule.
Click on each day for a list of speakers for that day. There, you can read descriptions of the speakers and follow the links to science-based resources related to their claims.