Priorities Established By the Combating Autism Act for Improving ASD Identification: Looking Beyond Ideas and Instruments Towards Implementation

Background: The 2006 Combating Autism Act or CAA is the most ambitious ASD national research strategy to date. In response to growing concerns about ASD’s prevalence and impact, CAA created the InterAgency Autism Coordinating Committee or IACC to establish priorities for federal research funding. Between 2008 and 2013, IACC helped to direct $1.8 billion towards these priorities. The lack of significant improvement in timely and accurate identification, especially for traditionally underserved groups, has led researchers and advocates to question these priorities. Would a greater focus on implementation, disparities, and capacity building be more effective in closing gaps in ASD identification?

Objectives: To establish how much federally-funded research addressing identification between 2008 and 2013, and the publications which resulted, sought to either (1) explore theoretically relevant factors, (2) validate instruments, or (3) test immediately applicable strategies to close gaps, improve implementation, or build capacity.

Methods: Using the Autism Research Database, we identified all federally-funded research grants between 2008 and 2013 that potentially addressed ASD identification. In addition to projects explicitly focused on ASD screening and diagnosis, we included potentially overlapping projects addressing services, lifespan issues, and infrastructure. We have also begun to assemble all publications arising from these grants, using existing federal databases supplemented by Pubmed/Psychinfo searches. We have begun to conduct title, abstract, and full-text reviews of these research projects and publications to identify the subset that clearly focused on identification. Within this subset, we have begun to distinguish between those addressing theoretically relevant factors, those validating instruments, and those testing specific and immediately applicable strategies. Within this last group, we are categorizing articles according to population, focus, and setting.

Results: Almost $500 million of federal research funding addressed the IACC priorities related to Diagnosis, Services, Lifespan, and Infrastructure between 2008 and 2013. Preliminary analyses indicate substantial variability in the extent to which federal funding was directed towards specific and immediately applicable tools or approaches to improve identification. For example, at least 25% of federal research funds targeting Diagnosis addressed questions only of theoretical importance (for example, examining potential biomarkers of ASD). IACC also fell far short of certain key targets related to diagnosis (for example, successfully allocating less than 5% of the desired funding towards improved identification of ASD in adults). Projects clearly intended to immediately improve identification are much more likely to focus on validating tools than addressing disparities or barriers to implementation. Additional analyses are underway to establish whether similar patterns are evident among the research publications generated by these projects.

Conclusions: Available analyses indicate that a relatively small proportion of the research funded by the NIH between 2008 and 2013 tested a specific and immediately applicable tool or approach to improving ASD identification. The paucity of research addressing disparities and implementation barriers limits the immediate impact of the knowledge gained thus far. Implications for future research and policy are discussed.