Monday, May 28, 2012
Dear Ms. Belluz,
We read with great interest your article entitled, The Battle Over The 'Cure' for Autism (Macleans.ca, January 26, 2012), and applaud your efforts to address and assess a number of treatments for autism which have been popularized in the media over the past several decades - despite the fact that very few have any scientific evidence to support them.
We appreciate your comments about the pitfalls of celebrity endorsements such as the one touted by Jenny McCarthy for gluten and casein-free diets as a treatment for autism. Endorsements such as these, as well as glowing testimonials available in abundance on the Internet, can result in false hope and misdirected investment into treatments that lack scientific support (e.g., hyperbaric oxygen chambers, chelation therapy, acupuncture, etc.), and can distract attention away from interventions that already enjoy a large body of scientific support. Furthermore, we were very pleased that you included Applied Behavior Analysis (ABA) in your article and even noted that it is a treatment for autism that has been well researched.
We wish you would have gone further to share with your readers that ABA is the only treatment for individuals with autism that has more than 40 years of published research supporting its methods executed by hundreds of researchers worldwide. For example, although you note that the "research suggests there are improved outcomes with the use of applied behavior analysis" you also quote Dr. Peter Szatmari (Professor of Psychiatry at McMaster University, Hamilton, Ontario) as saying that although evidence for Applied Behavior Analysis is promising, there are gaps in the literature, such as a lack of comparison studies between ABA treatments.
At face value, this statement has some truth; however, the vast majority of the 400+ treatments for autism lack even a single study published in a peer reviewed journal, nor does it refute the fact that Applied Behavior Analysis has been found to be effective by numerous replication studies involving larger numbers of research participants and hundreds and hundreds of single-case studies. In addition, the effectiveness of ABA has been acknowledged by a number of task forces throughout the US and Canada and by Dr. David Satcher, the former U.S. Surgeon General.
Furthermore, because ABA treatment should be individualized, rely on data-based decision making and continuous evaluation, its procedures typically lead to effectiveness for each individual. At this point in the state of the science, it is beyond debate that ABA is best practice for the treatment of autism spectrum disorder. We hope your readers do not take Dr. Szatmari's comments out of context and believe that ABA should not be considered as a legitimate treatment because of these gaps. Autism treatment is currently a veritable free-for-all, with many providers completely ignoring existing research and with scores of children not given access to the treatments that have the best available support. We think that is wrong clinically and ethically.
In your article you state, "[t]here are a lot of interventions that may make kids better, but nobody would ever say those intervention are cures' That leaves parents in a vulnerable spot." We have three reactions to this comment:
1) Treatment outcome is not black and white, and an exclusive focus on "cure" cheapens the incredible gains that are made by children and adults with autism every day; to learn how to play appropriately at a classmate's birthday party, to ride public transportation to work on a regular basis, to learn to use sign language to communicate one's wants and needs as opposed to engaging in self-injurious behavior are just a few examples;
2) We believe that what puts parents in an even more vulnerable spot is the constant bombardment of messages about sensational new treatments for autism (again often divorced from any basis in science), as well as the fact that many treatment providers ignore scientific evidence when treating autism, and by experts who fail to respect that although the science of autism treatment if not perfect, the existing evidence should be considered a the first course of action; and
3) On a broader level, it is important to appreciate that much of health care constitutes treatments, rather than cures. It is no different in the case of autism.
Thank you for an excellent article! It is critically important that authors such as yourself continue to raise awareness so that parents can become well informed and savvy consumers.
Mary Philips, BA and David Celiberti, Ph.D., BCBA-D
Association for Science in Autism Treatment