Newsletter
Volume 29 | 2006 | Number 3
Evidence-Based Practice and Autism Spectrum Disorders
By Dr. Susan M. Wilczynski
Medicine, psychology, education, and other fields of study are consistently coming to the same conclusion: Evidence-based practice is critical for patient care. Evidence-based practice involves the integration of research findings with clinical judgment and patient values (Sackett et al., 2000). In order to engage in evidence-based practice, service providers must have access to clear, concise information about the strength of evidence supporting different treatment options. For this reason, expert panels have been convened to evaluate empirical evidence on every topic from heart disease and cancer to nocturnal enuresis and attention deficit hyperactivity disorder (ADHD). After examining available research conducted to date, these panels have forwarded a series of practice guidelines to assist educators and service providers in making treatment decisions and in producing informed consumers. Is there any reason to believe autism spectrum disorders should be different?
Perhaps even more alarming than the increase in diagnosed cases of autism spectrum disorders is the exponential growth of 'miracle elixirs' for this set of disorders. In the absence of true scientific support, advocates for these approaches often cloak themselves in the garb of science by providing shocking figures on the number of children they have 'cured' (Green, 1999). Although scientist-practitioners often express surprise that parents would consider these unsupported treatments, it should be perfectly expected that parents would make such requests given their urgent need to help their children. Yet, in order to remain consistent with ethical standards requiring the use of empirically-supported treatments (Behavior Analyst Certification Board, 2004), service providers must both be aware of the strength of evidence supporting a broad range of intervention alternatives and be able to help parents and other consumers understand their import. Unfortunately, parents are often confronted with educators and service providers who are insufficiently familiar with the research literature. The uncertainty expressed by some educators and service providers speaks volumes when placed in contrast with the absolute certainty offered by proponents of 'cures.'
To be fair, many educators and service providers do not specialize exclusively in the treatment of one population and it is difficult to keep abreast of research outcomes when more than one population is served. Even when educators and service providers remain up-to-date on the latest research findings, they are still likely to find it helpful to be armed with an independent evaluation of the literature to share with parents and other consumers. In a climate where the need is so urgent, the alternatives so abundant, and the ability to keep updated on the latest research findings so difficult, evidence-based guidelines are absolutely critical.
Recognizing the importance of practice guidelines regarding autism spectrum disorders is not entirely new. In 2001, the National Research Council published a report examining the scientific, theoretical, and policy literature involving young children with autism spectrum disorders. Unfortunately, no conclusions could be drawn regarding treatment of older children and adolescents because this fell outside the purview of their examination. Also, because the research reviewed was conducted prior to the year 2000, it may be rapidly becoming outdated as a great deal of treatment research continues to be published. Currently, efforts are underway to complete the National Standards Project, a collaborative effort to systematically evaluate educational and behavioral treatment options for individuals under 22 years of age. The goal is to provide practice guidelines and information about the strength of scientific evidence supporting a broad range of interventions for autism spectrum disorders. The National Standards Project is expected to provide useful data regarding the effectiveness of both comprehensive programs designed to address all core deficits associated with autism spectrum disorders and focused interventions designed to either increase developmentally appropriate skills or decrease severe problem behaviors.
The National Standards Project may help promote evidence-based practice in the treatment of autism spectrum disorders by providing critical information about research-supported interventions. However, evidence-based practice involves more than merely having access to information about the quality and quantity of research supporting specific interventions. The results of the National Standards Project would need to be integrated with clinical judgment and patient values to truly reflect an evidence-based approach to autism services.
Debate remains among professionals endorsing evidence-based practice regarding the extent to which scientific research, clinical expertise, and patient values should be emphasized when making treatment decisions (APA, 2006). Well-reasoned arguments against an overemphasis on scientific research have been made. For example, drawing conclusions from published research is somewhat limited due to the unlikelihood of studies involving direct replications, simple extensions, and non-significant findings being published. Thus, if an insufficient number of studies support a particular intervention because replications and extensions are less likely to be published, should practitioners really shy away from using these interventions? In contrast, should practitioners only consider selecting interventions with the highest level of research support even though they know unpublished studies with non-significant findings may exist?
The National Standards Project, like all of its predecessors in evidence-based practice, must acknowledge that clinical judgment and patient values play an important role in determining which treatment to pursue. Of course, clinical judgment should always be informed by data. A consistent reliance on single-case design methodology to evaluate the effectiveness of an intervention should be employed whenever services are provided to children with autism spectrum disorders. Ideally, selection of the initial treatment approach would be influenced by the strength of evidence supporting an intervention and data would guide the continuance, modification, or termination of the intervention. Finally, the extent to which patients, families, and other consumers endorse a treatment approach should also influence intervention selection. Educators and service providers will have to respectfully inform patients, families, and other consumers about research-supported interventions, help them understand the importance of clinical judgment and data-based decision-making, as well as balance their ethical mandates with patient values as they maneuver through the sometimes difficult waters of evidence-based practice. This certainly requires a great deal of skill and careful consideration; it cannot be gleaned from any practice guideline. However, without a careful analysis of the educational and behavioral intervention literature, a crucial component of evidence-based practice is lost and patient care will be undermined. Certainly, controversy about autism treatment decisions will continue; however, solid information about the quality and quantity of research is necessary to move the field forward.
References
American Psychological Association. (2006). Evidence-based practices in mental health: Debate and dialogue on the fundamental questions. Baltimore, MD: United Book Press, Inc.
Behavior Analyst Certification Board. (2004, August). Behavior analyst certification board guidelines for responsible conduct for behavior analyst. Retrieved October 3, 2006, from http://www.bacb.com/pages/conduct.html.
Green, G. (1999). Science and ethics in early intervention for autism. In P. M. Ghezzi, W. L. Williams, & J. E. Carr (Eds.), Autism: Behavior Analytic Perspectives. Reno, NV: Context Press.
National Research Council. (2001). Educating children with autism. Washington, DC: National Academy Press.
Sackett, D. L. Straus, S. E., Richardson, W. S., Rosenberg, W., & Haynes, R. B. (2000). Evidence-based medicine: How to practice and teach EBM (2nd Ed.). London: Churchill Livingstone.