January 29, 2019
It is generally understood that it is difficult to translate ASD research into better outcomes for children with ASD if they are not promptly and properly diagnosed. In this context, our persistent failure to close gaps in timely and accurate identification of ASD in children is truly remarkable. Consider the Centers for Disease Control's most recent update regarding ASD's prevalence: the wide variations in reported prevalence from state to state (from 1 in 34 in New Jersey to 1 in 77 in Arkansas), the high median age of the earliest diagnosis (52 months), and the low percentage of children who had received a comprehensive developmental evaluation by 36 months of age (42%).
These and other marginal improvements in ASD identification over the past decade are especially alarming given the increasing investments in research in ASD: between 2008 and 2015 alone, more than $2.5 billion was mobilized for research in the US through the Combating Autism Act and other related campaigns. How has this happened? Do we know where we are going? How we will get there? What kind of tools, what kind of vehicle we will need? When we might hope to arrive? When can we hope to see delays in diagnosis really begin to decrease for all children, regardless of who they are or where they live? In another 5 years? 10 years? 20 years? Ever?
One answer may lie in the kind of research we have prioritized. In a presentation last year at IMFAR, I reviewed all projects funded through the National Institutes of Health (NIH) from 2008 to 2013 focused on ASD identification, and found only 9 projects (or 1% of total NIH funding for ASD research) focused on improving ASD identification among community providers. This is part of a broader pattern of research funding that has heavily favored basic research (e.g., into the causes, characteristics, and course of ASD) over applied research.
So what can we do? One solution may lie in the creation of a roadmap that describes precisely what we need to learn from research to translate better understanding of ASD into better practice and better outcomes. In this series of essays, I outline the rationale and structure for such a research roadmap to address ASD screening. This roadmap focuses on research conducted on the most widely-studied and recommended tools for ASD screening; those derived from the Checklist for Autism for Toddlers (CHAT), and its variants. This includes the original CHAT, the Modified CHAT (M-CHAT), and the Quantitative CHAT (Q-CHAT), grouped together here as the CHAT family (CHAT+). This roadmap offers an important new perspective for viewing research by breaking research down into specific stages to track progress and identify gaps. This can help program and policy leaders set new priorities and re-allocate resources as needed, ensuring that research can more effectively help people with ASD to achieve important life outcomes.
Listed below are individual essays in this series: I draw out a comprehensive research roadmap, describe the underlying rationale and structure, and illustrate how the stages of research are aligned with other elements in an integrated network (like training, policy, and services). Other essays in development will highlight the watersheds between different stages of research (basic to clinical research, and from clinical to implementation research), and reveal how each stage of research requires different resources and expertise. This series of essays is written to reach beyond researchers and experts in ASD, to a broader audience of professionals and policy leaders. It is intended to supplement other presentations and publications in preparation for a more traditional academic audience. Some of these other works will describe research conducted using the roadmap to systematically categorize more that 110 peer-reviewed research studies on CHAT+ since 1992. Other works will also extend analyses presented at IMFAR in 2018 to include all research funded in the US from 2008 through 2015.
Frankly, driving without a roadmap is never a good idea! We might know where we want to go, but we do not know how we will get there. Maybe we do not end up driving recklessly off a cliff in pursuit of a dream, but we just drive slowly to the only possible destination we can imagine... more OJ than Thelma and Louise. Or we might know where we want to go, but need a better car to get there. Maybe we can engineer an improbable escape despite our jalopy, but we are more likely to just putter slowly down the road, slowing traffic along the way... more Jed Clampett than Jason Bourne.
Click on the following to see what we might hope to eventually achieve with the right car and the right map.
A Screening Research Roadmap
This summary diagram illustrates how each stage of research on ASD screening practices can help to ensure continued progress towards important outcomes for people with ASD.
An integrated network
De-constructing the network of services, training, policy, and advocacy gives us a renewed appreciation for the unique role that research can play in improving outcomes.
Roadmap: Rationale and structure
Defining the specific steps, components, and milestones within each stage of research can help to break progress down into more manageable steps that can be addressed one study at a time.
Stages of research
When we understand how different stages of research influence different elements of this network, we begin to see the cascading effects of gaps in implementation research on outcomes.
Stages of Research: Critical watersheds
When are the results of research ready for use in the clinic? For widespread dissemination? These watersheds define the designs, participants, and measures needed to progress towards impact.
Stages of Research: Resources required
Each stage requires different types of scholarship, partnerships, funding, and training. These differences reveal how traditional researchers must adapt to undertake implementation research.