One problem is that a good deal of the solid research about autism lies in academic journals behind an Internet paywall, open only to people who have a university library card or can afford the journals’ exorbitant prices ($35 or more per article). Says neuroscientist Sophia Colamarino: “In today’s information age, where essentially anything said by anyone can be made accessible within a matter of moments, it is unfortunate that families have easy access to all BUT the most scientifically valid information, that which can be found in scientifically reviewed research literature.” NIH and Autism Speaks have tried to remedy this situation by requiring its research grant recipients to put any resulting peer-reviewed research papers on the PubMed Central online archive, but this policy affects only a fraction of the literature on autism.Another challenge consists of translating research into practice.
At The Journal of Autism an Developmental Disorders, Ann M. Sam, Ann W. Cox, Melissa N. Savage, Victoria Waters, and Samuel L. Odom have an article titled "Disseminating Information on Evidence-Based Practices for Children and Youth with Autism Spectrum Disorder: AFIRM"
There is now great demand for knowledge about intervention practices that work. This demand is pushed by the increased prevalence of autism spectrum disorder (ASD; Baio et al. 2018), recognition that ASD is a condition that has substantial life-long implications (Howlin and Magiati 2017), and evidence that children, youth, and adults with ASD benefit from intervention and instruction programs (Wong et al. 2015). Yet, just knowing which practices are effective and are supported by research is not enough to lead to increased use of such practices. Implementation and diffusion sciences both emphasize the need to translate such scientifically-based information into practical information that service providers can use in their work with children and youth with ASD and their families (Dingfelder and Mandell 2011; Fixsen et al. 2013). The purpose of this paper is to describe one approach that translated information about evidence-based practices into practical information for use in programs for children and youth with ASD, report the utilization of such a dissemination effort by consumers, and examine the evaluation of such information by consumersThe abstract:
Comprehensive reviews of the research literature have identified that focused ntervention practices for children and youth with autism spectrum disorder have evidence of producing positive developmental and learning outcomes. The Autism
Focused Intervention Resources and Modules (AFIRM) project has translated evidence-based practices identified by Wong et al. (Journal of Autism and Developmental Disorders 45(7):1951–1966, 2015) into online learning modules. The purpose of this paper is to describe (1) the process for translating the research literature into practical information that practitioners can use, (2) its dissemination through a freely accessible website, (3) the use of the modules by over 64,500 users located in the United States and abroad, (4) knowledge gained as a result of completin the modules, and (5) consumers’ evaluations of modules usefulness and relevance.
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