The Department of Health and Human Services (HHS) has issued its Report to Congress on Young Adults and Transitioning Youth with Autism Spectrum Disorder
According to IACC’s analysis of the ASD research portfolio (including both federal and private funders), funding allocated to projects on lifespan issues, including the transition to adulthood, represented the smallest segment of ASD research funding. In 2015, projects on lifespan issues received 2 percent ($6.1 million) of overall combined federal and private ASD funding, similar to the investments made in previous years; this percentage does not change when including only federal sources. When considering only the topic of transition, the proportion is less than 2 percent of total funding. In terms of number of projects rather than percentage of funding, lifespan issues again were 2 percent of the entire ASD research portfolio, with 34 projects across both federal and private sources; of these, 21 were devoted to transition issues.
As can be seen in Table 2, programs currently supporting research related specifically to the transition to adulthood among youth and young adults with ASD were found in only four agencies: NIH, HRSA, ED, and DOD. In 2013-2016, only 18 federally-funded research projects focused on transitioning youth and young adults with ASD were newly awarded across these four agencies; seven of these were in response to NIH’s Services Research for Autism Spectrum Disorder across the Lifespan (ServASD) Initiative, and four were in response to autism-specific research programs within HRSA. Across all federal agencies surveyed, only six investigator-initiated research projects focusing on transitioning youth and young adults with ASD were funded through broadly targeted programs: four projects through investigator-initiated extramural research programs in NIMH and NICHD, one study in response to ED’s (NCSER) cross-disability call for research on transition, and one investigator-initiated research project funded through DOD.