Afterword – A decade later

One of the most important books in our field is now ten years old, and a second edition will soon be published. Controversial Therapies for Developmental Disabilities, edited by John Jacobson, Richard Foxx, and Jim Mulick, is a powerful exposé of “fads, follies, and frauds” offered as services to the populations with which ABA is most involved. I was honored to write the afterword for the original volume and have done so again for the updated edition, which will soon be released as Controversial Therapies for Autism and Intellectual Disabilities, with editorship reduced to Foxx and Mulick because of John Jacobson’s passing, memorialized in the new preface. What follows are portions of my contribution to the new edition.

Would it have been too much?

Would it have been too much to expect a decade’s worth of progress? After all, the first edition was more than eye opening in its revelations of the dark underbelly of autism and intellectual disabilities. It was shocking for even professionals in the field to realize the scope of ill-conceived models, practices, and thinking offered in services to people with such well-established behavioral needs. The details exposed by the chapters were even worse. Far-fetched theories, second-rate experimental underpinnings (if any at all), embarrassing reasoning, ineffective outcomes, and the suggestion, in cases, of outright fraud. Describing some of these “therapies” as controversial was too polite by implying that there might be some legitimate basis for debate.

Alas, this second edition provides no relief. If anything has changed, it seems to have only been for the worse. The updated and new chapters paint no less depressing a picture of ways in which people with autism and intellectual disabilities are badly served by professionals and others who presumably mean well. Not only are the same problematic therapies and services still promoted in a marketplace that seems no less uncritical, new approaches lacking any greater merit have appeared to compete for attention and service dollars.

Too discouraging an assessment? It is not evident that any of the approaches identified in the first edition have been slain or even died of natural causes. The poster child of “controversial” therapies, facilitated communication, which seemed to have suffered grievous wounds from utterly unambiguous experimental refutations and widespread rejection by the establishment, appears to have found a new generation of gullible believers and even a new name (supported typing). If this is not enough, it has now been mirrored by a fresh approach called rapid prompting, which seems to differ mainly in moving what is being pointed at instead of the hand doing the pointing.

Other approaches, beliefs, and movements chronicled in the original edition continue to lack credible experimental support, though without apparent harm to their viability. Indeed, just by surviving they gather more adherents and scraps of institutional sustenance. Sensory and auditory integration, special education inclusion, gentle teaching, nonaversive approaches such as positive behavioral support, and more seem to be increasingly acknowledged features of the service delivery landscape. By failing to fade away from informed neglect, if not outright rejection, they seem to instead gain some measure of acceptance.

New chapters expose the apparently insatiable appetite within the special needs community for appealing promises over demonstrated substance. Animal assisted therapies (dogs and dolphins are the favored species), aromatherapy (lavender and cedar are apparently popular), and hands on therapies (neural organizational technique and holding therapy) add New Age overtones to the false hopes they encourage. And how could the treatment menu omit contemporary options such as gluten-free and casein-free diets?

A failure to educate

The pervasiveness of these controversial approaches to addressing the behavioral needs of people with autism and intellectual disabilities begs for explanation. How can there be so many? How can any gain more than a fringe of respectability? How can trained professionals fail to see through the flaws in theory and research methods, not to mention clinical shortcomings? How can established organizations lend legitimacy to unsubstantiated claims? How can families not see that these approaches do not bring their loved ones meaningful improvements?

As before, a number of chapters address these questions. Their answers are thoughtful and substantive, but neither straightforward nor ultimately satisfying. After all is said, it still beggars the imagination that so many people who share a genuine concern for those whose lives are limited by their disability could fail to see through the false promises and failed outcomes.

In my original Afterword, I placed much of the blame on our educational system, arguing that one of the implicit themes integrating these chapters is the failure of our education system to confront and work toward overcoming cultural ignorance. The criticism is not merely that colleges and schools of education fail to teach teachers to teach effectively, but the more damaging complaint that their pervasive influence on educational values and curricula is ineffective in producing an educated populace that has learned how to think critically.

There is no more seminal influence on parents, families, providers, and professionals alike than our shared educational history. It is this history that prepares us to evaluate our experiences and make decisions that will yield important consequences, whether as parents or professionals. It is this history that allows many to be seduced by the approaches cataloged in this book. It might seem a stretch to argue that kindly old education professors are the root of all evil, but it is undeniably true that the power structure of the educational industry, as well as its troops, share undergraduate and graduate degrees from colleges of education. It is this power structure that both generally and specifically influences the K-12 curriculum that spawns an autism and intellectual disabilities community uncritically susceptible to adoption and support of unsubstantiated models and practices.

But what about professional training?

If our system of K-12 education fails to adequately prepare citizens for life in a society that is in so many ways driven by science, at least our system of higher education would seem to offer another chance at overcoming culturally sanctioned ignorance. At least those who choose careers in autism and intellectual disability services might be prepared to bring an informed caution to assessing the marketplace of models, theories, and interventions. Unfortunately, not only is there no such established and widely available career track, the contemporary trend seems to lie in the direction of deprofessionalizing these services.

This lack of explicit career paths means that the opportunity for professional specialization, particularly at the bachelor’s level, is generally not available. Instead of preparing a cadre of professionals sharing a common educational history and explicit skills driven by both science and the needs of the served population, the field of autism and intellectual disabilities – as large and stable an employment market as it is – typically attracts the leftovers, or at least the excess, of social science and liberal arts majors who are not absorbed by the employment markets most consistent with their majors.

It might be argued that psychology and human development are among the most relevant fields of study for a general career track in autism and intellectual disabilities. Unfortunately, this focus is unusual in departments of psychology, which produce bachelor’s graduates with only a scattered and superficial background in the highly diverse field of psychology. Most departments lack even a single faculty member with primary training or experience in autism and intellectual disabilities who would be prepared to teach specialty courses in this area. Although colleges of education at least offer explicit training for those interested in careers serving these populations, the reality of special education or rehabilitation curricula also falls well short of instilling the skills necessary to critically evaluate “fads, follies, and frauds” in educational and intervention services.

There are many reasons for the failure of psychology and education departments to produce graduates prepared to critically evaluate the models and practices offered in the marketplace. At the top of the list is a philosophical framework pervading otherwise potentially valuable courses that is consistent with the general cultural view that human behavior is determined by mental processes. When this challenge is combined with the typical absence of training in what the science of behavior has revealed about how behavior actually works, it is unlikely that the lure of false promises can be overcome, whatever the other benefits of a college education. It might be too much to expect that our educational system would be able to challenge the subtleties of mentalism in a society that has yet to even acknowledge the problem. However, it is not unreasonable to expect that the educational enterprise at least facilitate acceptance of scientific approach to understanding the world.

The “have it your way” zeitgeist

It may be too easy to blame our educational system for failing to produce a citizenry prepared to confront the temptations of market driven therapies and services. After all, the educational industry is unavoidably part of the larger culture, a culture that actively accommodates the enemies of modern science. The prevalence of postmodernism and its ilk is one of the more discouraging sub themes of some of these chapters. The recitation of reasons fads arise tell a story of how the citizens of a society that in so many ways depends on the fruits of science have instead learned to view their experience of the world from a point of view that is impervious to influence from scientific or even lesser forms of objective evidence.

This tendency has only grown over the last ten years, aided by increasingly convenient access to every interest and point of view, no matter how misleading or even absurd. The internet not only provides whatever kind of information each person prefers, it makes it easy to ignore everything else, and studies have shown this is what we tend to do. If you think a new therapy you read about in a Facebook group is going to cure your child’s autism, you can not only quickly learn everything there is to know about it but do so without confronting any contrary information. A few decades ago, you probably wouldn’t have heard of that new therapy (without your attention it might not have gotten off the ground anyway), and your only option would have been to rely on the recommendations of professionals, for better or worse. The profound change we are experiencing in our easy access to information about anything has enormous benefits, but it comes at the price we must pay for some of that information being bogus.

This “have it your own way” attitude, compounded by ignorance of contrary evidence, becomes even more dangerous when it is broadly acceptable in the culture to give personal convictions priority over all other information. It is one thing to believe something that is not true and not know any better. It is much worse when social contingencies demand that personal convictions be respected by others, regardless of their veracity or consequences. The cultural value that personal beliefs are at least valid for the individual and must therefore be accommodated, no matter the cost, makes it difficult to resolve errant beliefs that have problematic outcomes. This form of social correctness removes an important means by which society can limit the damage that might otherwise be caused by personal ignorance.

This cultural value is on display at every turn. We hear politicians denying scientifically accepted evidence about the facts of nature. Parental convictions about the reputed dangers of childhood vaccinations are given sympathetic press, no matter the evidence. It is considered improper to argue about value-based treatment models offered to people with autism and intellectual disabilities. Many might even consider it impolite, if not downright rude, to criticize many of the controversial models, therapies, and viewpoints reviewed in this book, especially in face-to-face conversations with colleagues, other professionals, and parents. Applied behavior analysts, who are in the business of offering a science-based technology, are all too familiar with the demand that they tiptoe around various topics ever so gently, lest they offend someone’s convictions and sensibilities. Perhaps the more formal, scholarly approach of a book such as this is as close as we can get to overt criticism these days.

This social correctness is not just about manners. We all learn to avoid disagreements with others that are a matter of taste or that have trivial consequences. When a person’s beliefs bear on the well being of others, there is reason to be more honest in our reactions. And when we are acting as a credentialed professional providing services on behalf of individuals who are not able to represent their own interests, it might be argued that we are obligated to represent our professional convictions plainly, confronting differing views held by others as necessary.

This book is important because it expresses to colleagues in diverse areas of autism and intellectual disabilities things that may be difficult to say in person. It encourages our students to look at the evidence, think critically, and be constructively candid in their professional dialogs. This book is the little boy observing the emperor’s state of undress, not yet having learned that you are supposed to keep quiet if you don’t have something nice to say. It pushes back against social correctness that insists that we must not confront points of view in the professional arena that are weak or unsubstantiated and harmful to those we serve. It attempts to preserve the obligation of professionals in autism and intellectual disabilities to sell not what they would like to be true, but what is supported by strong evidence.

Finally, this book is especially important for ABA professionals, who may be the last line of defense against the unsubstantiated approaches it catalogs. Its chapter authors have done the hard work of uncovering the backgrounds of these approaches, reviewing the proffered evidence, and thinking through the many issues associated with their continuing appeal – exercises busy practitioners may have little time for. This service is important because although some of these approaches are obviously bogus, others are seductive and their shortcomings can seem subtle. What is so bad about filtering interventions though cultural values, after all, especially when those values might be personally appealing? Is it really important to critique the research methods embodied in studies offered in support of a treatment or educational method? If an intervention seems ineffective but otherwise harmless, why bother confronting it?

In the course of reviewing the controversial approaches, the chapter authors address these and other issues that are important in ABA practice, making this material valuable for ABA student training. ABA practitioners already into their careers should examine this material and recommend it to other professionals and give selected chapters to parents. These are modest ways to fight the good fight, but we must not relent in our efforts to offer people with autism and intellectual disabilities only services that have passed scientific muster.