Controversial Therapies for Autism and Intellectual Disabilities

Fad, Fashion, and Science in Professional Practice

Richard M. Foxx, James A. Mulick, Richard M. Foxx, James A. Mulick

• Publisher: Routledge
• Year: 2015
• ISBN:
  9781317623823
• Edition: 2
• Topic: Education
• Subtopic: Education General

One of the largest and most complex human services systems in history has evolved to address the needs of people with autism and intellectual disabilities, yet important questions remain for many professionals, administrators, and parents. What approaches to early intervention, education, treatment, therapy, and remediation really help those with autism and other intellectual disabilities improve their functioning and adaptation? Alternatively, what approaches represent wastes of time, effort, and resources?

Controversial Therapies for Autism and Intellectual Disabilities, 2nd Edition brings together leading behavioral scientists and practitioners to shed much-needed light on the major controversies surrounding these questions. Expert authors review the origins, perpetuation, and resistance to scrutiny of questionable practices, and offer a clear rationale for appraising the quality of various services.

The second edition of Controversial Therapies for Autism and Intellectual Disabilities has been fully revised and updated and includes entirely new chapters on psychology fads, why applied behavioral analysis is not a fad, rapid prompting, relationship therapies, the gluten-free, casein-free diet, evidence based practices, state government regulation of behavioral treatment, teaching ethics, and a parents' primer for autism treatments.

Part I

General Issues

Chapter 1

Where Do Fads Come From?

Stuart Vyse

But, above all, let it be considered that what is more wholesome than any particular belief is integrity of belief, and that to avoid looking into the support of any belief from fear that it may turn out rotten is quite as immoral as it is disadvantageous.

—Charles Sanders Peirce (1992)

It is wrong in all cases to believe on insufficient evidence; and where it is presumption to doubt and to investigate, there it is worse than presumption to believe.

—William K. Clifford (1886)

What’s in a Fad?

Before anything can be said about how fad therapies emerge and why they are often adopted over more valuable approaches, we must understand what we are talking about. What is a fad therapy in the field of developmental disabilities, and how does it stand in relation to other, nonfad therapies? When language is used to define social or functional categories, it is often because doing so benefits someone by codifying an inherent value system. The motivations behind the establishment of these categories may be honorable or dishonorable. For example, the use of the label “mental retardation,” based on definitions involving intellectual and adaptive functioning, made it possible for a segment of the population to receive educational and social services that enhanced their lives. At the same time, applying this label—as well as providing the services—often made these individuals more susceptible to stigmatization, prejudice, and discrimination (Danforth, 2002; Goode, 2002). Indeed, the current preference for the phrase “person with intellectual or developmental disability” is aimed at diminishing the stigmatizing effect of labeling by referencing a specific aspect of the person—one ability among many—and avoiding a global assessment of the individual.

Throughout this volume the treatments that are its subject will be described using adjectives such as “fad,” “alternative,” “controversial,” “pseudoscientific,” and “unsubstantiated,” among others. It must be acknowledged that these are—in some sense—terms of derision, and they reveal the value system of the authors who use them. I will return to the definition of a fad later, but what of the other terms? For example, if a therapy is “alternative,” it can only be so in relation to some other standard or orthodox therapy (Wolpe, 1999). That which distinguishes orthodox from alternative or unorthodox therapies may or may not be the level of scientific support. A therapy is “controversial” in relation to some issue of controversy brought, presumably, by those who are critical of its use. Thus, just as being honored often has more to do with the honorers than the honored, being controversial may have more to do with the views of a therapy’s critics than with the therapy itself. Absent arguments against it, a therapy might be free of controversy, but being so says nothing of its value. The label “pseudoscientific” is a pejorative adjective that suggests the treatment in question appears to be—but is not—scientific. The therapy may employ a technical jargon that sounds authoritative, and it may include a theoretical support structure that makes reference to genuinely scientific content (e.g., neurotransmitters, the sensory system, the brain), all of which give it the look and feel of a scientifically based treatment. But if these trappings of science are not backed up by reliable evidence, the treatment is a sham that steals some of its appeal from the positive reputation genuine science has acquired over its history. Despite the abundant evidence to the contrary (e.g., Carroll, 2003; Shermer, 1997, and—for that matter—a book like this one), we live in an age of science. Although many people reject scientific thinking in important aspects of their lives, appeals to the scientific basis of a belief, product, or treatment often lend credibility to it. So powerful is the allure of science as a method of argument that some have even attempted to use it to support beliefs that are clearly beyond its limits, such as the existence of an afterlife and the possibility that the dead can communicate with the living (Schwartz, Russek, Nelson, & Barentsen, 2001).

But the label “unsubstantiated” or similar terms, such as “non–evidenced-based treatments” or “treatments unsupported by evidence,” are a more direct indication of the philosophy of this volume. If the chapters that follow share a common bias, it is that developmental disabilities treatments should be backed up by evidence and that scientific evidence is to be valued over other forms. The only way to obtain this kind of evidence is through research conducted according to accepted standards of methodology in the behavioral, social, and medical sciences. This is an admittedly positivist stance, and some postmodernists have argued that objective truth is impossible in the social sciences (Flax, 2013; Gergen, 2001). But these arguments do not hold much sway in this arena. People with developmental disabilities and those who work with and care about them do not always leap to scientific evidence—or sound scientific evidence—as the best way of evaluating treatments for developmental disabilities, but most agree in principle that this is the kind of evidence that should matter. Most believe that a treatment should be chosen not on the basis of whether it is enjoyable to administer, is consistent with the user’s personal philosophy, or seems logical but on the basis of whether it works. Unfortunately, there is less agreement about what constitutes proof of success. Although most of those concerned about people with developmental disabilities are seeking evidence for the treatments they are using, some have not embraced scientific evidence as the most valued kind, and others cannot separate out the good and bad information they encounter. The purpose of this book is to outline the standards for evaluating treatments and help differentiate treatments that have strong scientific support from those that have little or no support.

By using these labels to distinguish various treatments and therapies for developmental disabilities, we are establishing categories on the basis of the presence or absence of scientific support. This value system is also evident in the definition of a “fad” proposed by the editors of this book. A fad, for the purposes of this volume, is defined as “a procedure, method, or therapy that is adopted rapidly in the presence of little validating research, gains wide use or recognition, and then fades from use—usually in the face of disconfirming research, but often due to the adoption of a new fad” (J. W. Jacobson, personal communication, November 11, 2001). So a fad is a therapy that is not supported by scientific evidence and that has a fairly rapid rise and fall. The basic concern, however, is the question of evidence. There are other techniques—equally lacking in support—that nonetheless manage to maintain their popularity over relatively long periods of time. Though they are not fads, these more resilient therapies are also the appropriate concern of many of the chapters to follow. Understanding that these are relative terms, the short life span of a fad may sometimes be evidence of its lack of value, but conversely, the longer life of another therapy is not necessarily evidence of value. If popularity and longevity were correlated with usefulness, a book like this one might not be necessary. But for a variety of reasons, this is not so. In Darwinian terms, scientific support is not the only measure of a treatment’s evolutionary fitness. Other factors may allow it to fill an ecological niche and survive repeated rounds of natural selection.

As we set up these categories of scientifically supported and unsupported—essentially, good and bad—treatments, it is useful to examine one’s motives. Science has a long history of theoretical and technological triumphs, but over the years, scientific arguments have often been used to further unsavory social agendas. The eugenics movement of the late 19th and early 20th centuries attempted to use science to further classist and racist political agendas (Gould, 1981). The system of classification known as the Diagnostic and Statistical Manual of Mental Disorders (DSM; American Psychiatric Association, 2013) is purported to be a scientific aid to research, diagnosis, and treatment, but its publication by a professional organization, the American Psychiatric Association, serves to keep this profession at the top of the heap as the final arbiter of what represents a bona fide mental illness (Greenberg, 2013; Kutchins & Kirk, 1997). The link between this manual and health insurance reimbursement policies raises additional questions about the APA’s motivations in publishing this document. One need only ask who benefits if the manual contains many mental disorders (the current total is approximately 300) rather than just a few.

But in the present case, some of the more disreputable motivations are less of a factor. Yes, we believe in science. This is an ideological stand of sorts. But it is one that benefits no particular product or profession. The most effective treatments described in these chapters have been and are being used by a variety of professionals and nonprofessionals. At this point in history, the promotion of scientific therapies does not benefit any one professional group exclusively. In the years since the first edition of this book appeared, there has been a great expansion in state laws restricting advertisement of behavior analytic services in the United States to those who have achieved certification by a national board (Behavior Analyst Certification Board, 2014), but certification is not restricted to any specific discipline or degree program. In addition, there are few products being sold in connection with a scientific approach to developmental disabilities treatment, and the professional books, periodicals, and manuals that are produced provide little profit motive for their authors and publishers. Certainly individual careers and treatment programs have benefited from the adoption and promotion of scientific therapies, and thanks to the development of state standards, insurance reimbursement for behavior analytic services is often possible. So proprietary and financial motives are at play. But so far, nothing remotely similar to the relationship between the American Psychiatric Association and the health insurance and pharmaceutical industries exists in this case. The primary social motive is improving the lives of people with developmental disabilities through the promotion of evidence-based, high-quality services.

Where Do Fads Come From, and Why Are There So Many?

Why is this book necessary? In a world in which scientifically validated, effective treatments exist for people with developmental disabilities, where do all the ineffective fad treatments come from? Why are they not naturally eliminated from the landscape and replaced by treatments that work? In the remainder of this chapter, I will outline the circumstances—essentially the market demands—that appear to encourage the development and promotion of fad therapies, and I will outline some of the reasons consumers—parents and professionals—choose them over other options. The story is one of the gradual adoption of science as the final arbiter of value, and it mirrors, in many respects, the history of modern medicine. Thus, as an introduction to the circumstances facing the field of developmental disabilities treatment, I will first outline the history of medicine in America. Although the following section is about United States history, the arc of the plot—from nonscientific therapies to scientifically validated ones—takes a similar path in Europe and other areas that have endorsed Western medical procedures. The specific events are different, but the endpoints are the same.

A Brief History of American Medicine

In the United States and other Westernized nations, effective research-validated procedures are now the dominant approach to medical problems, but this is a relatively new development. Rigorous medical research of the kind we value today became a widespread phenomenon only at the beginning of the 20th century. Before then, medical practice both here and in Europe was characterized by a diverse array of practitioners and techniques. Today, in the field of developmental disabilities, scientifically validated techniques exist, but unlike contemporary medicine, these methods have yet to emerge as the single dominant approach to treatment. An examination of the history of Western medicine provides a number of clues to the popularity of alternative, unsubstantiated treatments in developmental disabilities treatment.

American Medicine Before the Revolution

In the colonial period, medical services were provided by a variety of practitioners, the great majority of whom had no formal academic training. Barbers in England and the colonies were authorized to perform surgery, and training was passed on by the apprenticeship method. It was not until 1745 that surgeons separated from barbers to form their own guild (Duffy, 1993). Surgeons were not officially authorized to practice medicine, but in fact, they often served as general practitioners for the lower classes. Apothecaries also served the poor, providing drugs for the treatment of illness, and they were joined by a variety of other trades offering medical services, including folk healers, bloodletters, bonesetters, midwives, and herb doctors, among others.

In the American colonies, particularly in New England, a class of minister-physicians emerged. While studying theology, many ministers who dissented from the prevailing church in England had also studied medicine as an alternative means of employment in the event they were dismissed from the church. As a result, a number of the ministers who arrived in the colonies also provided medical services. Cotton Mather was such a minister-physician, and he wrote a very eloquent medical essay on a measles epidemic of 1713, which claimed five members of his household (Duffy, 1976).

In the 17th century, those colonialists who had received formal training—such as the minister-physicians—were at the top of the medical hierarchy and were the practitioners most likely to treat the ailments of the wealthy. Often these physicians had studied at the great hospitals and universities in England and on the Continent. The American Revolution interrupted contact with British institutions and slowed the adoption of new medical techniques, but by the time of the Revolution, one hospital and two medical schools were in operation in America. A number of medical societies had been formed, and several colonies had established medical licensure laws (Duffy, 1976). Nonetheless, the limited access to academic training meant that the majority of physicians acquired their skills by apprenticeship.

From the Revolution to 1900

Many of the forces that led to modern medicine of the 20th century were present in the period following the Revolution. Throughout the 18th century, physicians had attained the highest status of all those providing medical services, but medicine rarely brought them wealth. Furthermore, their methods were not free from criticism. The most important American doctor of the late 18th and early 19th centuries was Benjamin Rush. Rush attended college in New Jersey and apprenticed with a physician in Philadelphia, but to improve his chances of success as a doctor, Rush traveled to Britain to study medicine. He attended the University of Edinburgh and studied with noted physicians in London and Paris. Upon his return to America, Rush was appointed professor of chemistry at the College of Philadelphia. During the 1770s, Rush was swept up in the political furor o...