ASAT Supports Proven Treatments and Informed Choice
- ASAT Board of Directors
In an editorial in Autism Research Review International (Vol. 13, No. 3, 1999) entitled “The ABA Controversy,” Dr. Bernard Rimland described the literature and positions of the Association for Science in Autism Treatment (ASAT ) as “nonsensical….counterfactual….indefensible….distorted.” He included ASAT among a group he characterized as the “ABA [applied behavior analysis] is the only way folks.” Dr. Rimland also spent a fair amount of space reviewing the history of what he represented as his personal support for ABA. In response, ASAT would like to acknowledge Dr. Rimland’s contributions to the autism field, and then focus on the real issues here—the health and welfare of people with autism, and the quality of the evidence about autism treatments—rather than anyone’s personal history, or opinions, or support for one treatment approach or another.
Without question, Dr. Rimland had a heroic moment in the 1960s when he challenged the self-assured pronouncements of the psychodynamic, “ refrigerator mother” camp about the cause and treatment of autism. He deserves a place in the annals of autism advocacy as someone who was courageous enough to challenge powerful myths and self-proclaimed authorities, and who compiled the then-emergent evidence that autism is a disorder of brain development that is not caused by bad parenting.
But a review of the past few years of Autism Research Review International (ARRI) reveals a consistent pattern of premature and uncritical promotion of treatment “breakthroughs” in the absence of credible research support. A number of scientific reviewers have concluded that many of those treatments have proved ineffective or harmful. The research that appears to support several other treatments is methodologically weak, and still others have yet to be evaluated carefully. These include anti-fungal treatments, auditory integration training, dimethylglycein, dolphin therapy, drum therapy (“Rhythmic Entrainment Intervention”), facilitated communication, gluten-and casein-free diets, holding therapy, intravenous gamma globulin, secretin, sensory integration therapy, and vitamin megadoses. Two recent and thorough multidisciplinary reviews found that those treatments are far from being “breakthroughs,” or even helpful adjunct treatments for autism, as they have been portrayed in ARRI (see N Y, Maine Issue Evidence-Based Assessments of Autism Interventions in this issue of Science in Autism Treatment ,Vol. 1, Fall, 1999). Consider just a few examples.
Facilitated Communication (FC) was initially given positive coverage in ARRI, which helped spur its widespread, uncritical adoption. Data from numerous controlled studies showing that people with disabilities were not the ones communicating through FC, and reports of families destroyed by false allegations made through FC, were eventually reported in ARRI. By that time, however, hundreds of thousands of taxpayer dollars and uncounted hours had been spent on FC instead of on safe, effective, validated methods for teaching people with autism to communicate for themselves. Based on their own reviews of the scientific evidence, several reputable organizations issued position statements to the effect that FC has no validity or reliability. The first was The American Academy of Child and Adolescent Psychiatry, which stated in 1993 that “Studies have repeatedly demonstrated that FC is not a scientifically valid technique for individuals with autism or mental retardation.’’ This was followed by comparable statements by The American Psychological Association (1994), The American Speech- Language-Hearing Association (1994), The American Association on Mental Retardation (1994), The Association for Behavior Analysis (1995), and The American Academy of Pediatrics (1998). At least 40 controlled studies and numerous legal proceedings have now demonstrated that FC is invalid, unreliable, and harmful; no methodologically sound studies have produced compelling evidence that it is effective. This led the New York State Department of Health (NYSDOH) review panel to conclude, “Because of the lack of evidence for efficacy and possible serious harm of using facilitated communication, it is strongly recommended that facilitated communication not be used as an intervention method in young children with autism.” (New York State Department of Health, 1999).
Auditory integration training (AIT) has been strongly endorsed in the pages of ARRI over the past several years. In contrast, The American Academy of Audiology (1993) and The American Speech-Language-Hearing Association (1994) issued a policy statement and technical report, respectively, to the effect that AIT lacked scientific validity and had potential negative side effects, including hearing loss. In August 1998, the American Academy of Pediatrics declared that “...as yet there are no good controlled studies to support its use,” and further noted that, “Although AIT practitioners declare the technique to be safe, there is some information about both the quality control characteristics of the equipment used and potentially unsafe sound levels produced by it.” The NYSDOH panel found that only one of 16 published articles on AIT with children with autism met established criteria for adequate evidence of efficacy. That study found no major differences between a group of children with autism who received AIT and a group who listened to unmodified music. The panel’s conclusion? “Because of the lack of demonstrated efficacy and the expense of the intervention, it is recommended that auditory integration training not be used as an intervention for young children with autism.” (New York State Department of Health, 1999).
Sensory integration therapy has also been promoted in ARRI, although careful scrutiny of the research on this popular intervention has consistently failed to uncover any sound scientific evidence that it produces meaningful outcomes for people with autism or other developmental disorders .This was the conclusion of both the NYSDOH and the Maine Administrators of Services for Children with Disabilities (MADSEC) review panels; in fact, the NYSDOH literature search found 29 articles on the use of sensory integration therapy, none of which met criteria for adequate evidence of efficacy. Readers are also referred to articles on sensory integration therapy in this issue of Science in Autism Treatment , as well as critical reviews of sensory integration therapy by Arendt, MacLean, and Baumeister (1988), and Shore (1994).
Megadoses of vitamin B6 and magnesium have long been promoted in ARRI, with repeated assertions that they are totally harmless. In contrast, a blue-ribbon panel of reviewers convened by the National Institute of Mental Health stated in 1995 that although most studies of vitamin B6 with children with autism reported improvements,”... all studies had serious methodological problems , and there is no good rationale for using vitamin B6 with this population” (Singh, Ellis, Mattila, Mulick & Poling, 1995). Another recent review of research on Vitamin B6 and magnesium in the treatment of autism concluded, “The majority of studies report favorable response to vitamin treatment. However, interpretation of these positive findings needs to be tempered because of methodological shortcomings inherent in many of the studies” (Pfeiffe Norton, Nelson, & Shott, 1995). The NYSDOH panel reached similar conclusions, and further noted that chronic use of vitamin B6 has been reported to cause peripheral neuropathy (weakness, numbness, and/or unpleasant sensations in the extremities). Children who receive even modest doses over long periods may be at risk for this side effect, but no long - term studies have examined that possibility (New York State Department of Health, 1999). This side effect was also noted by Dr. Victor Herbert in a chapter of the book The Health Robbers: A Close Look at Quackery in America (also see Quackwatch.com). Dr. Herbert stated the facts plainly: “Many substances that are harmless in small or moderate doses can be harmful either in large doses or by gradual build-up over many years. Just because a substance (such as a vitamin) is found naturally in food does not mean it is harmless in large doses” (p. 24).
The most recent treatment to be hailed in ARRI as an effective treatment for autism is the hormone secretin. However, when secretin was presented in a series of media reports last year as possibly the most important discovery in the history of autism,” there was not a single controlled study to support the claim that it produced large , functionally significant improvements in children with autism— merely anecdotal reports. Secretin has been approved only for single dose administrations to test gastrointestinal functioning in adults, with cautions about its potential for producing severe allergic reactions. Whether it is safe to use with typically developing children much less children with compromised central nervous systems—is unknown. Concerned parent, physicians, and other professionals pointed out these facts, along with the fact that the secretin preparation contains other ingredients that have known harmful side effects , including neurotoxicity (see Science in Autism Treatment, Spring,1999). The American Academy of Child and Adolescent Psychiatry issued a policy statement on March 3, 1999 to promote awareness that the use of secretin has not yet been proven safe in controlled studies. Several reputable investigators have conducted or are conducting evaluations of secretin with children with autism; it will be interesting to see what is revealed when placebo and observer bias effects are well controlled, and the children’s functioning is assessed by direct observational measures according to the standards of good science. Meanwhile, secretin continues to be promoted in ARRI.
Could it be that the afore mentioned professional organizations , reviewers, scientists, and parents, along with ASAT, have all been dead wrong about the scientific evidence for these treatments, while Dr. Rimland is correct in asserting that “...several treatment approaches...clearly meet the criterion of scientific validation,” including vitamin and dietary interventions? Is the conclusion reached by the NYSDOH and MADSEC panels and other reviewers that ABA is the best-validated treatment currently available really ludicrous, false, absurd, nonsensical, counterfactual , indefensible, distorted, and wrong , to use some of Dr. Rimland’s terms?
Readers must answer those questions for themselves, of course, but in so doing we urge consideration of the facts presented above, as well as the following: Contrary to Dr. Rimland’s statements, there are many accepted scientific methods for evaluating treatment effects besides double-blind group studies. For instance, there are several other types of research designs in which a group of individuals who receive a specific treatment is compared with a group who receive no particular treatment, or another treatment altogether. There are also single-subject research designs, in which treatment-to treatment comparisons are made with the same individual, and replicated with that individual and others. Moreover, treatment effects can–and should–be measured by methods other than the laboratory assays of substances in the blood or urine that Dr. Rimland espouses. In fact, such substances may have little or no bearing on how an individual listens, learns, walks or talks. Changes in those and other aspects of functioning must be measured directly. There are numerous scientific methods for doing so. Finally, contemporary ABA is much more rich and complex than the “operant conditioning” methods Dr. Rimland says he observed in the 1960s, and has a substantial research foundation.
There are some other important questions we urge readers to consider carefully. How much time can parents, professionals, and people with autism afford to spend in pursuit of every treatment that someone claims is a “dramatic development” or “breakthrough?” How much private and public money continues to be poured into these “options” before they fizzle out (or not), only to be supplanted by another one? How many children are being used as subjects in uncontrolled , unmonitored “experiments” by people who have been encouraged to “press all the buttons,” and “try anything and everything that you think may be helpful”?
Contrary to the implications of the ARRI editorial, The Association for Science in Autism Treatment is not against choice. We are for informed choice. In the realm of autism treatment, ASAT believes that true choice is possible only when those making the choices are fully informed of the degree to which each treatment has been shown to be, or feasibly promises to be, effective and safe in peer- reviewed scientific studies. It is a contradiction of the notion of informed choice to fail to fully disclose the gaps or weaknesses in the evidence about any treatment, and to publicly attack those who raise legitimate questions about the quality of that evidence.
Nor is ASAT an “ABA only” organization. On the contrary, many of the parents and professionals on ASAT’s Board would like nothing better than to find an effective alternative to the hard, expensive, and time-consuming work entailed in ABA programming. ASAT ’ s Advisory Board draws from a variety of disciplines in the biological and behavioral sciences. Our values statement clearly stipulates that A S AT will support any treatment that is shown to be effective or promising in methodologically rigorous studies–not in speculative articles, or testimonials, or surveys, or opinion polls.
At the same time, ASAT does not suggest that anyone’s statements about treatments for autism should be taken at face value, including ours. ASAT’s board and supporters include many professionals and parents with a great deal of knowledge about autism. Nevertheless, we do not claim any exclusive moral high ground because we are parents, or that we have all the answers because we are professionals. We know that we all need to be vigilant about the limits of our knowledge. And, no matter how numerous our supporters, we will not cite opinion polls to buttress our positions. Popularity has never been any guarantee of truth.
ASAT encourages parents and professionals to become informed about the quality of the evidence that supports all claims about autism treatments. We hold that parents have not only the right to choose treatments for their children, but also the responsibility to make sure that those treatments are based on sound evidence of safety and effectiveness. Those who support ASAT’s efforts do so because they know that humane, ethical application of scientific knowledge is necessary to ensure that everyone who is ill, disabled, young, or otherwise vulnerable receives the best possible care. Children and adults with autism deserve no less.
How Credible is the Research on ABA Treatment for Autism?
In his editorial in ARRI, Dr. Rimland referred to only one ABA study, the Lovaas (1987) study of early intensive behavioral intervention. The fact is that something in excess of 550 controlled studies published in the professional literature since the 1960s document the effectiveness of ABA methods for producing functional improvements in many skill domains of people with autism. (DeMyer, Hingtgen & Jackson, 1981; Hingtgen & Bryson, 1972; Matson, et al, 1996).
Dr. Rimland characterized methods of measuring treatment effects in ABA studies as “subjective” and “soft,” and implied that they are not “scientifically replicable.” That is inaccurate. In ABA studies, treatment effects are measured by repeated direct observations of individuals over time. Treatment procedures as well as potential treatment effects are defined in observable, measurable terms. Specific procedures are followed to control for biases inherent in human observations, including verification by trained independent observers, objective measurement criteria, reliability measures, and others. These methods have been well described in the behavior analysis and therapy literature for decades, replicated in thousands of published studies, and widely adopted by many behavioral scientists. Indeed, since autism is currently behaviorally defined and diagnosed, behavioral observation and measurement methods could be incorporated into evaluations of virtually all types of treatments for autism.
Single-subject research methods are among the hallmarks of applied behavior analysis. Controlled comparisons of a particular treatment with no treatment, or with another treatment, are made with the same individual(s). In the single subject approach, treatments are deemed effective only if they result in functional improvements for the individuals involved - effects that are typically much larger, in terms of measure d gains, than effects that are found to be statistically significant in comparisons of averaged data in group research studies. Single-subject designs are particularly useful for evaluating treatment effects in typical education and treatment settings, since most practitioners are concerned with individual clients or learners, rather than groups. Because individuals diagnosed with autism often differ considerably from one another, the intensive focus on the individual also makes single-subject research methods well-suited for studying treatment effects in autism.
Arendt, R.E., MacLean, W.E., Jr., & Baumeister, A.A. (1988). Critique of sensory integration therapy and its application in mental retardation. American Journal on Mental Retardation, 5, 401-411.
DeMyer, M.L, Hingtgen, J.N., & Jackson, R.K. (1981) Infantile autism reviewed: A decade of research. Schizophrenia Bulletin, 7, 388-451
Herbert, V. (1993). Vitamin pushers and food quacks. In S. Barrett & W. T. Jarvis (Eds.) , The health robbers: A close look at quackery in America (pp. 23-44). Buffalo, NY: Prometheus Books.
Hingtgen, J.N., & Bryson, C.Q. (1972). Recent developments in the study of early childhood psychoses: Infantile autism, childhood schizophrenia, and related disorders. Schizophrenia Bulletin , 5, 8-24.
Lovaas, O.I. (1987). Behavioral treatment and normal intellectual and educational functioning in autistic children. Journal of Consulting and Clinical Psychology, 55, 3-9.
Matson, J.L., Benavidez, D.A., Compton, L.S., Paclwaskyj, T., & Baglio, C. (1996). Behavioral treatment of autistic persons: A review of research from 1980 to the present. Research in Developmental Disabilities, 17, 433-465.
New York State Department of Health (1999). Clinical Practice Guideline: The Guideline Technical Report. Autism/Pervasive Developmental Disorders , Assessment and Intervention for Young Children (Age 0-3 Years). Author; 1999 Publication No. 4217.
Pfeiffer, S.l., Norton, J., Nelson, L., & Shott, S. (1995). Efficacy of vitamin B6 and magnesium in the treatment of autism: A methodology review and summary of outcomes. Journal of Autism and Developmental Disorders ,25, 481-493.
Shore, B.A. (1994). Sensory-integrative therapy. Self-lnjury Abstracts & Reviews, 3 (1), 1-7.
Singh, N.N., Ellis, C.R., Mattila, M.J., Mulick, J.A., & Poling, A. (1995). NIMH Psychopharmacology consensus panel handbook: Vitamin, mineral, and dietary treatments for individuals with developmental disabilities. Columbus, OH: Ohio State University, Nisonger Center UAP.
This article originally appeared in an issue of “Science in Autism Treatment”, the newsletter of the Association for Science in Autism Treatment (ASAT). It may not be republished or reprinted without advance permission from ASAT. For reprint permission please contact firstname.lastname@example.org