Conducted by David Celiberti, PhD, BCBA-D
President, Association for Science in Autism Treatment
As our newsletter readers and website visitors are well aware, parents of children with autism are confronted by an overwhelming array of treatment options, most of which are not scientifically validated. I had the opportunity to interview Tom Zane and Suzanne Letso, and asked them about their experiences countering pseudoscience in the treatment of autism. Their biographies are provided at the end of the interview.
Q: Thank you both for participating in this interview. Tom, please share with us how you first became concerned about pseudoscience.
Zane: Well, it seems like we have been confronted and challenged by pseudoscience for a long time. Being a behavior analyst, and thus committed to data-based decisions and a scientific approach towards autism treatment, I often saw treatments being implemented which either didn‘t make sense or were not working. Upon reviewing the literature about the treatment, often I quickly learned that there was simply nothing published, no solid, valid research evidence showing that the treatment worked, or had actually ever been tested! Another influence on my thinking came from my experiences within a School of Education in which we prepared regular and special education teachers. The faculty members were not behavior analytic, but more traditionally trained and prepared, and I saw how little instruction the teachers-in-training had in analysis, science, and data-based decisions. I won‘t say that pseudoscience was actively promoted, but I believe that it was tolerated.
Q: Suzanne, although you are now heavily immersed in the field of autism, your initial career path was different. Please tell us about some of your experiences both in your prior career and as a parent.
Letso: Actually, I became concerned about pseudoscience in autism treatment well before I ever heard of behavior analysis and, in fact, the industry in which I worked required a level of scientific validation. I was a marketing executive working in the medical industry prior to my son‘s diagnosis of autism. At that time, I was responsible for collaborating with surgeons and other medical professionals to compile empirical evidence related to newly emerging surgical products and procedures that could potentially improve the mortality and morbidity rates of patients. We couldn‘t ask the FDA to approve a new surgical device based solely upon parent testimonials or philosophical assertions without definitive evidence. Yet when I asked for the research to support the treatments suggested for my son, no one could produce any compelling evidence that met the same standards long recognized within the medical community in which I worked. Just when I started to believe that there was absolutely no autism treatment with adequate scientific evidence, another parent shared her copy of “Let Me Hear Your Voice” and the first two Lovaas studies. It was a “eureka” moment for me.
Q: As you both pointed out, varying degrees of respect for science can be found within many diverse fields. Suzanne, in light of your marketing background, are there differences in presentation style between those that support scientifically validated treatment and those that do not?
Letso: In a sense it is a very uneven playing field when you compare the promotion of pseudoscientific treatments with the ways in which scientifically-validated treatments are described to the public. In stark contrast, scientists, including the behavior analytic scientist-practitioner, are very careful to describe the limits of their research, and make every effort not to overstate the effects of the treatment under study. Pseudoscientific proponents often describe their treatments in value-ladened, emotional terminology and often promise extraordinary outcomes that go well beyond the available evidence.
Unfortunately, it is difficult, if not impossible, to disarm autism-specific pseudoscience in a time, place, and culture that routinely embraces pseudoscientific claims in other areas of day-to-day life. Perhaps we would have a greater chance of minimizing the appeal of pseudoscientific interventions for high stakes disabilities such as autism if we can first convince others that there is benefit to utilizing a scientific approach in general. Unfortunately the 20-second sound bite rules the marketing world and our perceptions of what is “good for us” is often shaped by messages that are at best unclear and not founded in good science. Do 4 out of 5 dentists really recommend a particular brand of gum? If only 5 dentists were asked, or if each dentist had a stake in the gum company than the statistic would be less believable than if an independent market research firm conducted a nationwide survey of all dentists. Statistics can deceive as well as inform yet it is virtually impossible for each of us to assess the credibility of every claim for every sales pitch we are bombarded with each day. However, being able to differentiate between the relatively innocuous and critical issues that warrant further investigate is as important a skill to develop as learning how to evaluate the overall quality of the evidence when we do decide to look beyond marketing claims and headlines. The inquiring mind that wants to know – and to raise questions – is far more likely to be receptive to information about what works and what doesn‘t when their child can‘t talk, won‘t look at them, and is falling further and further behind with each passing day.
Q: Suzanne, these are excellent observations. Tom, what lessons should advocates of scientifically-validated treatments learn from the resilience of pseudoscientific treatments?
Zane: This is a good question. First, we need to realize that many people have different opinions and definitions of what constitutes “scientifically-validated.” A colleague and I are currently reviewing the criteria for evidence, as promulgated by various organizations around the country. There is quite a disparity that exists, ranging from the reliance on “clinical judgments” to levels of statistical significance. So, first, we who advocate scientifically-validated treatments need to understand that we don‘t have the monopoly on how that is defined. Second, we need to be able to argue persuasively for why our definition of empirical evidence matters the most. Last, I would say that the major focal point for our efforts in this area has to be parents. They are the ones who make the decisions as to what treatments to select for their children. They hold the power. We need to effectively communicate with parents as to what criteria should guide their treatment decision-making and that using such criteria may enhance the outcomes for their children.
Q: In your view, what strategies seem to be the most effective? What strategies seem less effective?
Zane: Primarily, take data on the effect of these treatments. Data should show that they are not working in most cases. Attempt to establish, a priori, criteria for when a treatment will be withdrawn due to ineffectiveness. We need to confront this on a child-by-child basis. In addition, as I noted above, we need to effectively communicate with parents to “sell” our view of evidence and criteria for effectiveness. If parents were to accept our vision of this world, then we would see a reduction in use of these wild treatments.
With respect to less effective strategies, assuming that we have all the right answers and that professionals and parents should simply listen to us, is one bad idea. Another bad strategy is not recognizing the possibility of a method working for a particular child. We need to be able to make the argument that, although extensive research may show a lack of effectiveness, a particular method might work for an individual child, for at least a brief period of time. By making this recognition, we won‘t come across as close-minded and inflexible.
Q: Those are excellent points. What are some suggestions you would make to behavior analysts working on multi-disciplinary teams in public school settings where there may not be a shared commitment to science-based treatment?
Zane: First and foremost, be a team player, in that you always show respect and thoughtful consideration. However, second, always go to the literature and the research. Try to educate the team about the importance of science-based treatment. Talk about how science guides clinical practice in other professions, such as medicine. When specific treatments are discussed, report on the extent of the literature. For example, Relationship Development Intervention (RDI) has only one published so-called study attempting to assess effectiveness, and that was done by the developer of the treatment. When facts like these are pointed out, often the argument is won. Another strategy that has been successful for me was to encourage administration to adopt an organization-wide policy that reflects a commitment to evidenced-based practice. What this means is that the organization is committed to using only those treatments that have empirical evidence of effectiveness, defining what will constitute evidence, and developing a procedure for someone to propose the use of a treatment that may or may not have evidence. Institutionalizing such a policy has gone a long way in filtering out possible fad treatments.
Letso: Selecting goals and objectives that will have social validity within the school setting, as well as those that are most likely to be successful, quickly can go a long way to help other professionals see that what we do works and can enhance the quality of life for the student, family, and school community.
Q: Given the significant impact that pseudoscience has had on distracting consumers from treatments that have significant scientific support such as applied behavior analysis, what should organizations, such as the Association for Behavior Analysis International (ABAI,) do differently to address this issue?
Zane: First, ABAI should continue to promote science in autism treatment and never waver from that commitment. Second, we need to talk more about how science-based treatments promote the dignity and welfare of the clients we serve—that is, by implementing evidenced-based treatments, clients and consumers are more likely to make progress and be more independent. Third, ABAI should respond to reports of pseudoscientific and faddish treatments. ABAI needs to disseminate information regarding the lack (if in fact there is a lack) of evidence to support particular treatments that are popular in autism. ABAI needs to become a rapid responder to wild claims that are promoted in the press and in our society.
Letso: ABAI, ASAT, and other national or local agencies should all take a leadership role in the dissemination of accurate information about pseudoscientific treatments at every opportunity. Issuing position statements and producing scholarly comparison of treatment effects are important contributions. However, translating this information into the everyday language of the general population is also vitally important if we want the general population to understand the information we share with them. It isn‘t always easy to describe what we do without putting our listeners to sleep.
Q: Moving forward, what are the three most important things needed to attenuate the influence of pseudoscience?
Zane: First, we need to model pro-science, pro-evidence behavior. We need to use evidenced-based treatment in our work and to publicize science and the importance of its use in autism treatment. Second, we need to police our field and minimize or eradicate the use of pseudoscience treatments by behavior analysts! As frightening as that seems, it is the case that some behavior analysts actually are certified both as behavior analysts and as practitioners of other therapeutic models that are not deemed effective through controlled research. We behavior analysts have to consistently promote our adherence to science and scientific methodology. And, third, we need to continually explore, through our science, treatments that are effective. The more treatments that are demonstrated to be effective, the less need there will be by some people to rely on unproven treatments.
Thank you very much for sharing your experiences and insights with us. As you know, the issues you raise are central to ASAT’s mission and initiatives and we appreciate all your efforts.
Dr. Thomas Zane is an Associate Professor in the School of Education, and the Founder and Director of the Center for Applied Behavior Analysis at The Sage Colleges in Troy, New York. Dr. Zane earned his Bachelor‘s and Master‘s degree in psychology at Western Michigan University and his doctorate in Applied Behavior Analysis at West Virginia University. He has served as a Post-Doctorate Research Associate at the University of Massachusetts, Professor at Mount Holyoke College, and Johns Hopkins University Department of Psychiatry. He is a licensed psychologist in New York and Massachusetts. Dr. Zane has published in various journals and books, presented at regional, national, and international conferences, and been an invited lecturer in Ireland and the Republic of China. His research interests include teacher training, staff development, and evidenced-based practice in autism. As part of his duties at Sage and the Center for Applied Behavior Analysis, he offers a Master‘s of Science Degree in Applied Behavior Analysis and Autism, a distance-learning graduate program.
Suzanne Letso is the co-founder and CEO of the Connecticut Center for Child Development, Inc. (CCCD) in Milford, Connecticut. Mrs. Letso currently serves as a Scientific Advisory Council member for the Organization for Autism Research, member of the Board of Directors for the Association of Professional Behavior Analysts, as Chairperson for the Connecticut Association for Behavior Analysis Public Policy and Legislative Action Committee, and is Vice President of the Board of Directors for Marrakech, Inc. She has participated in the establishment of a number of other service organizations and autism-related initiatives over the last 15 years. Mrs. Letso holds a B.A. in Elementary Education from Southern Connecticut State University, a MA in Leadership from Duquesne University, and is a Board Certified Behavior Analyst. Prior to her work related to behavior analysis, Mrs. Letso worked as a marketing executive for international medical product manufacturers, where she was involved in new product, business, and venture capital start-up initiatives. In addition, she has been involved in organizational assessment and development of for-profit enterprises in other fields. Mrs. Letso is the parent of a 19 year old son with autism.