|Project Title||Principal Investigator||Institution|
|Early ASD surveillance - 1||Windham, Gayle||California Department of Health|
|Early ASD surveillance - 2||Wetherby, Amy||Florida State University|
|IACC Strategic Plan Objective||2008||2009||2010||2011||2012||Total|
|Expand the number of ADDM sites in order to conduct ASD surveillance in children and adults; conduct complementary direct screening to inform completeness of ongoing surveillance; and expand efforts to include autism subtypes by 2015. |
IACC Recommended Budget: $16,200,000 over 5 years
|N/A ||7.L |
|7.L. Funding: The recommended budget was partially met, but it is noted that the full funding of the ADDM sites is reflected in Objective 7.I. and thus there may be underrepresentation of funding in this category. |
Progress: Supplements have been provided to six ADDM sites by CDC to collect data from a younger cohort (4-year-olds) in addition to the 8 year olds currently studied; two other ADDM sites have received supplements from CDC to conduct surveillance studies among 15 to 18 year olds. Despite these expansions, further work is needed to better understand prevalence in both younger and older populations. A current project at UNC is reassembling those who participated in TEACCH to conduct a study of long-term outcomes. Also, Paul Shattuck has published studies on young adults with disabilities seeking services that have revealed a significant drop in services use and access post- high school, along with an increased likelihood to remain living with a parent or guardian. In addition, the Utah cohort (mentioned in Question 6) has been used for studies related to adults with autism, with a recent paper identifying health risks and causes of mortality.
Remaining Gaps, Needs and Opportunities: While subtypes were included as part of this objective, with the changes in the DSM to eliminate subtypes, this portion of the objective may no longer be relevant. In the future it may be more useful to collect data on characteristics of children and adults with ASD who participate in studies.