Most of my 25-year career in ASD has centered on providing services. Throughout that time, I have tried to draw straight lines from research findings to practice, and show how science benefits children with ASD. On the way, I learned is that not all research is equally relevant to service professionals and agencies seeking guidance in helping their students, patients, and clients achieve better lives right now.
Research that evaluates the effectiveness of specific practices is directly relevant because it orients those providing services towards proven interventions. In an outcome research study, a treatment is delivered to people with and/or without ASD under conditions that allow us to attribute any observed improvements to the treatment itself. Ideally, the treatment is delivered to the same kind of people who will participate in the programs we want to improve, and in a manner mimicking real-world conditions.
Several groups have defined objective and rigorous criteria for the amount and quality of outcome research needed to establish a practice as evidence-based (National Autism Center, 2015; Cox et al, 2013; Reichow, Doehring, Cicchetti, & Volkmar, 2011). Each of these groups now includes the single subject experimental designs common to applied behavior analysis in these reviews, dramatically expanding the research that can be used to establish a given practice as evidence-based. These evidence-based practices or EBPs can be prioritized when designing a program for one person or deciding what practices professionals should be trained to deliver.
Consider systematic reviews that have established that a specific technique like differential reinforcement (or DR) is an EBP for decreasing challenging behaviors like aggression or self-injury (Savage & AFIRM, 2017). With this knowledge, a professional can confidently design a whole program of services around DR and related EBPs for challenging behavior. The same body of outcome research can suggest answers to specific questions critical to practice, like how to select the best candidates for DR, how intensively DR must be delivered, and how quickly progress might be seen. These answers can also guide decisions about the kinds of professionals needed to design and deliver a program using DR, and the funding needed to do all this. When these same reviews fail to find similar support for other popular techniques like sensory integration (National Autism Center, 2015; Reichow, Doehring, Cicchetti, & Volkmar, 2011), professionals can consider these findings when establishing treatment priorities. As noted by Dr. Sam Odom, Director of the Frank Porter Graham Child Development Institute at the University of North Carolina, “the challenge has been to develop materials, such as the AFIRM modules, that will help the practitioner choose practices wisely and implement them with fidelity.”
For now, the impact of these EBP reviews is limited: they might establish what treatments are effective and what progress we should expect, but they do not always tell us what outcomes are important to overall success in life. Programs established solely around very specific EBPs can therefore still miss important life outcomes, and there are many important outcomes for which no EBPs have been established. So practitioners must always carefully identify individualized goals, track progress, and look beyond the available outcome research when there is no response to an EBP or there is simply no EBP available. As noted by Dr. Brian Reichow, Associate Professor in the School of Special Education at the University of Florida, “This is especially important when considering the research literature for individuals with ASD, given the heterogeneity of individuals with ASD and the need to identify and utilize effective treatments at the individual level.”
Research that identifies gaps in desired services and quality of life for people with ASD is directly relevant because it orients those setting service-related policy towards areas of critical need. In this kind of research, a population of people with ASD is surveyed with respect to the services they received, the needs they have, and/or the outcomes they achieved. This kind of research can guide decisions about services at every level of delivery.
Consider research that consistently identifies delays in diagnosis for children from underrepresented groups (Dickerson et al, 2017). Using these findings, a service professional might re-assess potential barriers (like the relative lack of referrals from other providers serving families who do not speak English), and decide to offer translated versions of ASD screening instruments to these providers. Similarly, an agency leader may look for barriers built into their own organization (like the difficulties that families living in poverty might encounter in simply getting to an appointment), and create a satellite clinic with easier access to public transportation.
Research on the characteristics associated with ASD is sometimes relevant to service providers. Some research on characteristics associated with ASD has revealed some co-occurring mental health conditions that can complicate ASD and directly impact important life outcomes. This kind of research is clearly relevant to treatment. Consider the debilitating anxiety that occurs in a surprising proportion of people with ASD at some point in their lives, and that is responsive to EBPs like adapted forms of Cognitive Behavioral Therapy or CBT (National Autism Center, 2015). This kind of research can sensitize service professionals to co-occurring anxiety, and perhaps mobilize them to seek CBT. This kind of research can also help agencies to adopt policies to ensure adequate funding for treatment.
Other research studies have focused on characteristics deemed important to theories of ASD’s development, but without clear implications for intervention and/or important life outcomes. Consider one such study describing a new approach to assessing a specific aspect of social understanding that reveals differences between people with and without ASD and that suggests exciting new possibilities about how ASD emerges over development. These findings are unlikely to change the practice of most service professionals. Why? Professionals must decide each day and for each child which treatments are likely to lead to the best outcomes. Without clear guidance about implementation and outcomes, they will probably choose to focus on characteristics with a clear impact, using known, practices with proven effectiveness.
Research on the possible causes of ASD has rarely proven to be relevant to the services provided to children with ASD. Why? Because we have yet to identify any single, specific cause clearly linked to a significant proportion of cases of ASD, or any cause amenable to intervention (Doehring, 2013). To be clear, our understanding of ASD’s causes has influenced services. Almost fifty years ago, for example, neurological and genetic research was used to overturn prevailing psychoanalytic theories and treatments that ascribed ASD to poor parenting. And research refuting links between ASD’s apparent rise and the MMR vaccine have been key to maintaining the high vaccination needed to ensure public health. Of course, research on ASD’s causes might yet suggest new paths to intervention. But until then, such research will remain largely irrelevant to those seeking to improve outcomes now.
Taken together, these distinctions suggest a potential disconnection between the potential benefits of research and the actual outcomes experienced by people with ASD. The challenge for ASD researchers, professionals, and advocates will be to work together to close this implementation gap. As noted by Dr. Fred Volkmar, Editor in Chief of the Journal of Autism and Developmental Disorders, “Research in adults age groups is so severely limited as to be, on some topics, almost nonexistent. We know very little about the needs of adults with ASD and this research gap is a critical one to address as children with ASD move into adulthood.”
Cox, A. et al. (2013). National Professional Development Center on Autism Spectrum Disorders: An Emerging National Educational Strategy. In Doehring, P. (2013). Autism Services Across America: Roadmaps for Improving State and National Education, Research, and Training Programs. Paul H. Brookes Publishing Co., Baltimore, MD
Dickerson, A. et al., (2017). Autism spectrum disorder reporting in lower socioeconomic neighborhoods. Autism, 21(4), 470-480.
Doehring, P. (2013). Autism Services Across America: Roadmaps for Improving State and National Education, Research, and Training Programs. Paul H. Brookes Publishing Co., Baltimore, MD.
National Autism Center. (2015). Findings and conclusions: National Standards Project, Phase 2. Randolph, MA: Author.
Reichow, B., Doehring, P., Cicchetti, D. & Volkmar F. (Eds.). (2011). Evidence-Based Practices and Treatments for Children with Autism. Springer-Verlaug, New York, NY.
Savage, M., & AFIRM Team. (2017). Differential reinforcement. Chapel Hill, NC: National Professional Development Center on Autism Spectrum Disorder, FPG Child Development Center, University of North Carolina. Retrieved from http://afirm.fpg.unc.edu/differential-reinforcement