Controversial Therapies for Autism and Intellectual Disabilities

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, Second 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, a parents’ primer to find what autism treatment works, relationship therapies, the gluten-free, casein-free diet, evidence-based practices, state government regulation of behavioral treatment, and teaching ethics.

Preface to the First Edition Fad, Dubious, Controversial, Pseudo-Scientific, and Politically-Correct Treatments in Developmental Disabilities Services.

Over the last 25 years the field of mental retardation and developmental disabilities has grown into one of the largest and most complex, and costly, human services systems in the United States and, indeed, in the world. In the United States, this service system, including child, family, and adult services, consumes billions of service dollars annually, at a level greatly disproportionate to the number of people with developmental disabilities served relative to the number of others served through other programs. The breadth and depth of the clinical field, and related research activities, attest to an extensive and now longstanding public policy commitment to the betterment of people with developmental disabilities in the United States and many other nations. At the same time, this field has certain essential features that are common to other human services and that challenge the fidelity and effectiveness of care at the individual, practitioner, provider agency, and local, state, and national service system levels.

These features include shifting philosophical positions that often drive regulatory action and change where and how, but not how well, people with developmental disabilities are served and a broad reliance on the least trained and experienced personnel as the primary agents of service. These features are perhaps inherent both in the nature of the work to be done, which relies upon human agentry as a service delivery process, and on the constraints on resources that are determined first by public policy, and secondarily by the costs of providing services in a manner that conforms to market standards in the general community. Manual labor is involved in much of the work that needs to be done on behalf of people with developmental disabilities, and this work is done in real time. There are fewer opportunities for teaching service recipients self-care skills, fewer educated consumers of services, and there is often a degree of antagonism toward professionals who incorrectly estimate service needs or independence of people with developmental disabilities.

Overview of Autism and Intellectual Disabilities Services

There are also persisting tensions between some of those who advocate for services based on how much costly professional support is really needed. This is because some regard disability as merely a “state of mind” that requires only attitude change on the part of those without disabilities and view the recommendation or offer of professional services as “evidence of discrimination.” In contrast, others advocate for improved, validated, well-reviewed and critically evaluated services and supports for this vulnerable population. Many allied health and human service disciplines do not emphasize scientific training in the preparation of practitioners and professionals. Unfortunately, over time many of these individuals rise to become influential managers in human services. As a result, the developmental disabilities field, like other human services fields, is pervaded by the delivery of services and design of supports that are less effective than they could be, and sometimes even damaging.

Treatments often are provided based on unvalidated or even disproven models of human behavior or methods of intervention. Sometimes people with developmental disabilities may receive services that actually conflict and undermine effectiveness of care. These types of problems are not limited to adult human services. The education of people with developmental disabilities has been affected by the same forces. Expenditures for the education of children with special needs have continued to grow to the point where school districts budgets are stretched thin. Yet, many of these costs are for programs that are ineffective, poorly designed, and inappropriate and that actually retard student progress, or which are selected by practitioners (e.g., special educators, principals) based primarily on their endorsement or marketing by authorities or well-known professionals in education.

Workforce and employment dynamics are not the only factors that undermine the integrity of treatment or intervention. Parents of children with developmental disabilities, in particular parents of children with mental retardation or autism, are continually seeking, ever more assertively, to obtain more efficacious treatments and educational interventions than the ones they are being offered. The research literature documents both the inefficacy and efficacy of a wide variety of treatments and educational methods for children and youth with a variety of conditions.

Research can be used as a fairly reliable guide to what actually works. However, effective treatments or interventions are not always among the choices that professionals inform or offer to parents. Sadly, parents tend to be hesitant to question credentialed professionals about the grounds for their recommendations, sometimes even hesitate to probe professional endorsement of what appear to be quite strange or illogical treatment options. Local professionals, most of whom are not specialists in mental retardation or developmental disabilities, are most likely to recommend that parents use the types of services with which the professionals are most familiar.

These are often not state-of-the-art, sometimes not even appropriate treatment or educational options, but merely the most common, and could be minimally effective or even damaging when used with some disability populations. Even specialists or local educational agencies may recommend methods that fall within their range of skills or that they provide, rather than referring children and families, or dependent adults and their families, to seek more appropriate and better validated alternatives. Despite the fact that a large share of public health care funds is dedicated to services for people with developmental disabilities, generally a small proportion of these funds goes to pay for services delivered by clinical professionals who meet community standards of licensure or certification and who are disability specialists.

One reason why is that fees for services are not lucrative or even, in many cases, competitive with reimbursement under managed care or sufficient to cover practitioner expenses. Specialists in some disabilities are exceedingly hard to find. In the not-forprofit service sector, which dominates adult developmental services, journeyman professionals typically lack funds to attend training in specialized topics, or to attend professional conferences, or to participate in extended training in empirically validated interventions.

Often, as well, the ratio of professionals to the number of people with developmental disabilities they serve can be insufficient to permit them to effectively train and provide ongoing technical assistance to the staff who are often the actual direct therapists who carry out interventions. It is well-established that training is effective only when professional follow-up and technical assistance is available and provided. Thus, while there are numerous threats to the integrity of services, no one element of, or group of people, in the service system is responsible for the fragility of developmental disability services. Furthermore, shifting philosophical bases of care, which drive system reforms, have taken place at a rapid pace and have thereby perpetuated this fragile state.