A Review of The Complete Guide to Autism Treatments
Freeman, S. K. (2007). The complete guide to autism treatments, a parent's handbook: Make sure your child gets what works! Langley, B.C. and Lynden, WA: SKF Books, Inc.
Reviewed by David Celiberti, PhD, BCBA-D
President, Association for Science in Autism Treatment
Just when we think we have seen everything, we are reminded that with autism treatments anything and everything is possible, particularly given that many individuals have recognized that autism treatment can be a very lucrative business. The array of treatments for autism is indeed quite diverse and taken together can be absolutely overwhelming. Take a few examples:
- "In packing, children are wrapped tightly for up to an hour in wet sheets that have been refrigerated, with only their heads left free. The treatment is repeated several times a week, and can continue for years." (See http://en.wikipedia.org/wiki/Autism_therapies. It is important to note that the lack of scientific evidence to support the use of packing is acknowledged on this Web page.)
- In an article touting the miracle of clay baths in the treatment of autism, a Web site reads: "When selecting a clay for healing and detoxing purposes, it‘s important to remember that not all clays are created equal … There are too many "fly-by-night" companies out there, so make sure you‘re dealing with a reputable seller." (See http://www.theautismnews.com/2009/06/26/battle-autism-with-bentonite-clay.)
- "The Autism Code Program™ makes all this possible by opening a door in the blocked wall of autism, allowing the parents to communicate with their children in a way unknown before. Through their work in the program, the parents form communication with their children solely at the level of consciousness without any interaction with the children, and the children respond to the words being articulated within their parents' inner world." (See http://autismcode.org).
Thankfully, there is a new resource available to help parents and other consumers develop the skills needed to differentiate science from pseudoscience and viable options from nonsense.
Dr. Sabrina Freeman is a prolific writer who has published numerous works related to autism and its treatment. Her latest book, The Complete Guide to Autism Treatments, may indeed be her most important contribution to parents of children with autism, as well as to those professionals who work with this clinical population. It is also noteworthy that Dr. Freeman is the parent of a 21 year-old daughter with autism, and holds a PhD in Sociology from Stanford University, where she specialized in small group research. As will be detailed below, Dr. Freeman shares her perspectives as a mom, which further contributes to the authenticity of this book, and may appeal to parents who may be more amenable to the cautionary words of one who walks in their shoes.
The book is comprehensive, thoroughly researched, and well organized. Throughout, Dr. Freeman communicates a critically important message: individuals with autism deserve access to science-based treatment and their time, their potential, and the overall resources of their families should not be wasted. This message is wholly consistent with the mission of ASAT; therefore, it seemed very fitting to highlight Dr. Freeman‘s book in this issue of Science in Autism Treatment.
The Complete Guide to Autism Treatments is divided into two primary sections. Section I is organized around topics related to the various treatments for autism, of which there are several dozen. Section II highlights basic concepts about science, hypothesis testing, and research methodology. Section I begins with a review of behavior-analytic treatments for autism across home and school settings, as well as within the area of early intervention. The various offshoots of applied behavior analysis are also summarized and evaluated (e.g., intensive behavioral treatments, pivotal response training, positive behavior support, verbal behavior therapy, and fluency training). Then there is a fairly comprehensive subsection related to the myriad of non-behavioral treatments, including those that occur in school, as well as those that are child-initiated or parent-facilitated. These subsections are followed by biomedical therapies, speech and language therapies, and, ultimately, a final section for miscellaneous therapies not better categorized in the above subsections. Each of these subsections is divided, and in some cases divided further, in an effort to capture the more frequently-touted treatments for autism.
It is frankly unfortunate that such an extensive taxonomy is needed simply to categorize all that which is available to consumers, particularly given that the vast majority of treatments proposed for autism lack adequate scientific support. Consumer advocates who think that exposure to many diverse treatment options is a good thing are likely not considering the agonizing decisions parents must make about how best to help their child with autism, or the second-guessing and guilt that may come from worrying that one is not doing enough, or the extraordinary financial burdens that come from paying for numerous treatments out of pocket. Individuals with autism deserve a clearer path to effective intervention.
Parents of children with autism, particularly those with newly diagnosed children, face a dizzying array of options that can be absolutely overwhelming. Do parents of children from any other clinical population have to face these matters to the extent that we see in autism? Quite simply, no. Parents of children with autism deserve all of the information needed to consider possible treatments carefully and to make the most informed decision for their child. Fortunately, this book will be of tremendous help in that regard, for Dr. Freeman‘s review and description of the available research is presented in a careful, thorough and straightforward manner. Each of these treatment subsections is organized around responses to a series of 8-9 questions. These questions are applied to each treatment discussed. (see table at end)
Section II, titled “How do we know what works and what doesn't?” focuses on the scientific method, hypothesis testing, and research methodology. At times, the content may seem somewhat dense, but that speaks more to the complex nature of scientific inquiry than to Dr. Freeman‘s writing style. These more technical sections are preceded by a number of caveats empowering parents to question the “experts” whom they will undoubtedly encounter over the course of their child‘s treatment. There is considerable attention paid to the components of research, data interpretation, and analysis of a study, as well as descriptions of many all-too-common red flags in autism treatment. Section II ends with 57 pages of references!
This book has many notable strengths. The format of nine recurring questions within Section I provides a predictable framework for the reader. In fact, Dr. Freeman‘s careful analysis of the state of the research underlying specific ABA treatments is offered in the same spirit and with the same diligence as the non-behavior analytic treatments. This is critically important, given that the abundance of research in ABA may mistakenly give the impression that all that falls under the umbrella of ABA is well supported empirically. This could not be further from the truth. Although some behavior analysts who are proponents of Positive Behavior Support, Verbal Behavior Therapy, Fluency Training, and Pivotal Response Training may disagree with many of Dr. Freeman‘s specific assertions, the quality of her analyses and the clarity of her concerns contribute to a much less divisive dialogue then we have seen in other books to date.
Proponents of the various treatments would benefit from careful consideration of the suggestions offered in the “What kind of study would I like researchers to do?” section. Far too often, a single study is put forth as validation of an entire treatment and all of its theoretical and conceptual underpinnings. For instance, as Dr. Freeman discusses in her book, a published research study that uses an art-based activity to integrate children with autism with their typically developing peers in no way validates art therapy as a treatment for autism. The type of research that is desperately needed is a well-designed study in which a clearly-developed treatment protocol for art therapy is implemented, and dependent variables are selected that measure core manifestations of autism. Sensory integration is another treatment for which research is sorely needed. In particular, Dr. Freeman recommends that commonly accepted, standardized measures should be used and administered by qualified people who do not know the group assignments of participants. The reader will find that Dr. Freeman has individualized her recommendations based on each treatment‘s existing research history. Execution of these research agendas may enable a number of treatments to live up to their promises.
Perhaps of greatest significance is that the author is writing from the dual perspectives of professional and parent. When speaking as a parent, her commitment to science is unwavering and, appropriately so; she is unapologetic in honestly sharing her perspectives as an informed mother. This is greatly needed at a time when many individuals fear being perceived as close-minded or unwilling to recognize the contributions of other disciplines. Her professional perspective only adds further credence to her stance regarding treatment options. There are wonderful insights throughout the book which will make this resource useful to those who will tend to read this book a few sections at a time. For instance, there is a very interesting discussion at the beginning of the book about participation in research with the caveat that precious time and resources should never be wasted on low-quality research, for not all research is created equally.
There are a few minor concerns. Many readers may have benefited from an introduction to some of the content in Section II at the very beginning of the book. To her credit, Dr. Freeman makes the suggestion to review this content first. I suspect this introduction would have laid a foundation for readers to synthesize the tremendous amount of information in Section I. Organizationally, I believe that the judicious use of tables and charts would have facilitated comparisons across treatments. Clearly, many parents are surrounded by those who support their informed decision making and their commitment to science-based treatment. Unfortunately, there are many other parents who find their efforts punished or derailed by those with competing agendas. Therefore, this comprehensive resource would have been further strengthened by specific and concrete strategies for both managing the behavior of others involved in treatment decisions, and for resisting and responding to pressures exerted by others to “just try” a particular treatment (e.g., the mother-in-law who argues that the gluten-free diet is harmless, so why would one not want to try it).
In summary, I believe The Complete Guide to Autism Treatments is a much needed contribution to the field of autism. The diligence and comprehensiveness of the various treatment reviews make this book an important "go-to" resource for parents and professionals alike. Undoubtedly this is a resource that the reader can expect to pick up time and time again.
For more information about The Complete Guide to Autism Treatments, as well as other books written by Dr. Freeman, please visit www.skfbooks.com
Questions applied to the treatments highlighted in Dr. Freeman's book
|“What is______?”||Dr. Freeman defines the treatment, highlights its purpose or intent with respect to autism, and describes its rationale and theoretical underpinnings. The proponent‘s more significant hypotheses about autism‘s etiology and treatment are often described as well.|
|“What evidence do the practitioners have that this really works?”||Dr. Freeman summarizes and evaluates peer-reviewed research and other possible sources of support (e.g., anecdotal evidence). She reports the results of database searches and is often quite explicit about numbers of articles that fall into categories (e.g., non-published studies, pamphlets, published in peer-reviewed journals, published in non peer-reviewed journals).|
|“What does this therapy actually look like?”||Dr. Freeman describes, often in great detail, the actual procedures associated with the treatment. This information is essential, as many consumers know little about the therapies to which they are subjecting their children. These descriptions are written in an objective, non-partial manner which, when read in isolation, would not necessarily reveal the author‘s stance on a particular treatment. Information about side effects and/or adverse effects is provided when warranted.|
|“What else do I think?”||Dr. Freeman speaks to broader issues that bear relevance when judging the merits of the particular intervention. She reveals her impressions of the treatment in a very forthright and compelling manner.|
|“Would I try it on my child?”||In contrast to the objective and factual tone of her responses to the questions above, here Dr. Freeman offers a more personal take on the treatment: a take that is honest and at times, blunt. Clearly, every child with autism is different, and thus, treatment decisions need to be made in consideration of those differences. Even if readers disagree with Dr. Freeman‘s stance, they will appreciate the candor and thoughtfulness of her position as a fellow parent.|
|“What kind of study would I like researchers to do?”||Perhaps the most insightful arguments can be found in these responses. Dr. Freeman argues that it is not sufficient that treatment proponents simply churn out publishable research, but rather that they design research that carefully addresses questions pertinent to that particular treatment. These may include, but not be limited to, better definition of the independent variable, use of tighter research designs, selection of more appropriate dependent variables, and a clearer demonstration of the relationship between the manipulation of the independent variable and the dependent variables. These particular sections clearly demonstrate Dr. Freeman‘s command of the existing research and what is needed to move forward.|
|“Who else recommends for or against ______ as a method for the treatment of autism?”||Dr. Freeman highlights recommendations from professional-membership organizations such as the American Academy of Pediatrics and the American Speech-Language-Hearing Association, from state and federal government entities, and from other organizations such as Quackwatch. It is important to point out that position papers from organizations represent a consensus among leading scientists and clinicians based on a thorough review of evidence and experience. These recommendations should be an important factor in decision making and I applaud Dr. Freeman for reporting them throughout her book.|
|“So you're still on the horns of a dilemma?”||Dr. Freeman provides further information for those still struggling with their decision for any number of reasons.|
|“What's the bottom line?”||Dr. Freeman offers a “bottom line.” Essentially, based on the scientific research to date, she clearly states when there is either no evidence, not enough evidence, or sufficient evidence to conclude that a particular intervention is effective. What is both striking and incredibly sad, is that for many widely-used treatments for autism, there is NO evidence.|