Author: Sabrina Freeman, Ph.D.
Publisher: SKF Books
Year of Publication: 2003
Reviewed by: Kenneth F. Reeve, Ph.D.
Parents of children who are afflicted by autism spectrum disorders are well aware of the need to serve as effective advocates for their children. To obtain funding and services for empirically validated treatments, parents must often go up against a phalanx of misinformed individuals and agencies, including therapists, physicians, teachers, school districts, and insurance companies. While it is disconcerting enough to have to struggle with these parties for effective treatment, imagine the battle that needs to be waged when an entire government fights to withhold funding for an empirically validated intervention. Such a story is described in Sabrna Freeman’s Science for Sale in the Autism Wars, which the book’s publisher describes as “the real-world story of a landmark legal battle between children with autism versus government and their academic mercenaries.” Dr. Freemanis Executive Director and Founder of Families for Early Autism Treatment of British Columbia (FEAT of BC), author of the popular book Teach Me Language, and mother of an autistic teenager.
In Science for Sale, Freeman relates the events that unfold when a group of parents sues the government of British Columbia (BC). The lawsuit (Auton vs. British Columbia) argues that the province’s failure to provide health care insurance for “medically necessary” treatment for autism discriminates against those who are mentally disabled. The specific type of treatment for which the parents are fighting is “Lovaas-style” Applied Behavior Analysis (ABA) therapy. This approach, pioneered in the late 1960s by Ivar Lovaas, Ph.D. and refined during 30 years of research, is now widely known as Early Intensive Behavioral lntervention (EIBI.) In an attempt to block the funding for the therapy, the BC government has a panel from its Office of Health Technology Assessment (BCOHTA) develop a report called Autism and Lovaas Treatment: A Systematic Review of Effectiveness Evidence for use in the government’s legal defense. This report attempts to discredit Lovaas’s work by using distortions, selective reporting of the research literature, and questionable ethical practices.
Part one of Science for Sale outlines the specific strategies and assertions used by the BCOHTA report, while explaining the counter arguments that effectively refute its assertions. For example, the report implies that Lovaas went beyond his data by claiming a “cure” for autism. As Freeman points out, however, Lovaas merely claimed that 47% of children in his study were rated “indistinguishable” from their typically developing peers following intensive behavioral intervention,
The BCOHTA also alleges that Lovaas’s research design was not adequate to support the conclusions Lovaas drew because the children were not adequately randomized into study and control groups. The BCOHTA implies that the children in the different treatment groups might have been different prior to any intervention and that these differences may have led to improvements in the outcome indicators following the 40 hours of intensive behavioral intervention. As Freeman notes, however, the BCOHTA’s assertion glosses over the fact that Lovaas used a fairly rigorous participant “matching” procedure to ensure that an equal number of individuals with particular characteristics appeared in each group.
Freeman also points out various discrepancies in the logic used by the BCOHTA to assess what constitutes “proper” research designs to judge effectiveness. Their report asserts that Lovaas’ therapy based on applied behavior analysis (ABA) is at best viewed as “experimental” because it did not use a proper randomized-groups research design. Strangely, the BCOHTA does not question the validity of the vast research literature generated from basic and applied studies in behavior analysis as a whole, even though many of these studies use variations of single-subject research and not randomized group designs. Freeman asks why rgw BCOHTA accepts ABA as a valid discipline but rejects Lovaas’s findings even though Lovaas’ research design more closely approximates what the BCOHTA minimally requires to assess an intervention’s effectiveness. In addition, if an entire discipline such as ABA is accepted at face value by the BCOHTA, why isn’t a specific intervention based on the principles of this discipline also seen as valid?
Freeman also strikes at the ethical practices of the BCOHTA in developing its report on Lovaas therapy. In British Columbia. the government oversees the financial operation of the province-funded health insurance system. In addition, the same BC government is responsible for setting policy on health issues, such as those pertaining to best practices for treatment of autism and other neurological disorders. Freeman argues that this produces an ethical dilemma for the BC government because need to remain cost-effective conflicts with the treatment needs of the neurologically disabled. Such a conflict may have led to a report that is biased against Lovaas therapy, given its high expense. In addition, although the BCOHTA repeatedly tries to come across as objective in their report of Lovaas therapy, one has to wonder again about the report’s biases since the BCOHTA’s main funding sources come from the BC government’s Ministry of Health, the direct target of the parent group’s lawsuit.
Other questionable ethical practices used in the BCOHTA include an overreliance on authors critical of Lovaas and the omission of important pieces of autism research that support Lovaas. Perhaps most telling example of selective use of the research literature is omission of a study that purportedly shows no beneficial effects from BC’s current interventions in place for autism! Freeman also compares the report on Clinical Practice Guidelines for Autism and Pervasive Development Disorders by the New York State Department of Health’s Early Intervention Program to that of the BCOHTA. While the New York report benefited from peer review and from a large independent panel of autism and ABA experts, the BCOHTA report was written by a much smaller panel of individuals who worked for the BC government, had no experts in either autism, neurological disorders, or ABA, and who minimally circulated their report for peer review. Given these deficiencies, one has to strongly question the validity of the BCOHTA’s findings.
Once the reader is presented with the arguments and counter arguments of the lawsuit in the first part of the book, Freeman then provides verbatim sections of dialogue, drawn from actual court records, between the lawyers and witnesses. This second section of the book has some redundancies because the lawyers representing the parents essentially repeat the counter-arguments against the BCOHTA report as outlined in the first part of the book. However, I experienced a great deal of satisfaction as the weak arguments made by the BCOHTA “experts” were dramatically refuted; and being privy to these arguments beforehand made the courtroom drama a much more exciting read.
As in any good showdown, the question that remains is: “Who won?” It is somewhat disappointing that Freeman answers this at the beginning of the second section. The BC Supreme Court ruled in favor of the parents by declaring that early intensive behavioral intervention (EIBN) is medically necessary and that the BC government violated the constitutional rights of the children in question by not funding this treatment. The court also ruled that the BCOHTA report was biased in its findings. Although this court ruling is already fairly well known in the autism community through news reports, the drama that builds in the courtroom dialogue in the might have been better served by saving this “happy ending” for the end of the book. Instead, Freeman concludes the book on a more somber note by pointing out that the government of BC has appealed the court’s ruling and has still not implemented the funding of ABA through the province’s health care system. Thus the final outcome of the conflict is not yet known.
Science for Sale in the Autism Wars is a must read for any interventionist and parent who is involved in the life of someone affected by an autism spectrum disorder. It should also be on the bookshelves of those who provide legal counsel and advocacy for the rights of autistic individuals. Besides being an interesting read, Friedman’s book provides a step-by-step guide for arguing against those who assert that ABA lacks a scientific basis and is not an effective educational intervention. For any person who has been inspired to fight against pseudoscientific and nonscientific information by famous skeptics, Science for Sale is a “candle in the dark” in the field of autism treatment.
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Dr. Reeve is Chair, Psychology Department, Caldwell College, New Jersey. This article was originally published in slightly different form in the Summer 2004 issue of “Science in Autism,” the newsletter of the Association for Science in Autism Treatment (ASAT).
This article was posted on September 19, 2004.
