Report to Congress
on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities
FY 2014 - FY 2018
Since the enactment of the Combating Autism Act in 2006, and its most recent reauthorization under the Autism CARES Act of 2014, federal agencies, in partnership with the community, have made significant strides in addressing many of the pressing needs of individuals and families affected by ASD. In the period covered by this report (FY 2014 - FY 2018), federally-funded programs and projects have increased knowledge on the prevalence of ASD in the U.S. population and how early in life ASD can be detected.
Recent studies supported by NIH have uncovered distinct differences in the brain development of children with ASD, as early as 6 months of age (i.e. before a formal diagnosis can currently be made). Federally-supported research is also revealing more about how autism develops and what risk factors may be involved. Studies supported by multiple agencies, including CDC, EPA, and NIH, have identified potential contributions to ASD risk from diverse environmental risk factors including dietary factors, air pollutants, and pesticides. Future research activities will need to weigh the impact of each of these factors in order to best develop personalized treatments for Individuals with ASD.
Advances in screening and diagnosis in ASD are also needed to maximize outcomes for people with ASD. Researchers are developing new screening and diagnostic tools that are more sensitive to ASD symptoms as well as more easily adopted by care practitioners. NIH-funded researchers are working to establish an evidence base for the impact of universal ASD screening by age 2. Meanwhile, activities funded by the CDC and other agencies aim to reduce the amount of time between initial ASD screening and first diagnostic evaluation. Combined, these efforts will likely lead to an increase in the number of children with ASD receiving early intervention, which has been demonstrated to lead to better behavioral outcomes.
While CDC most recently estimated the prevalence of autism in U.S. 8-year-old children at 1 in 59, data suggest that some racial disparities in diagnosis are decreasing. Agencies are increasingly harnessing the power of technology to facilitate information dissemination and service accessibility. For example, the Milestone Tracker app developed by the CDC educates parents about typical milestones during early childhood development. Research funded by AHRQ will enhance electronic health records, increasing their operability across systems. Additional efforts by ACF, HRSA, NIH, ED, and other agencies to increase outreach and service accessibility in underserved populations will potentially further reduce disparities in screening, diagnosis, and intervention.
NIH- and HRSA-supported studies of conditions that often co-occur with ASD (such as gastrointestinal disorders, sleep disruptions, and epilepsy) are contributing to intervention strategies. Also, panels of experts, such as those convened through the HRSA Autism Intervention Research Programs, are rapidly assembling guidelines to help individuals with ASD, families, and practitioners address these needs in the context of daily living. NSF supports several basic and applied science projects encompassing topics related to ASD in its neuroscience and cognitive sciences portfolios and Research in Disabilities Education Program. NSF also funds projects exploring computer simulation and robotics technologies that may have applications in helping people with ASD and other disabilities acquire important communication and social skills.
ED-funded activities to develop and evaluate educational interventions, as well as provide guidance for schools on how to make school environments safe and conducive to learning for students with disabilities, are improving the ability of schools to meet the needs of students on the autism spectrum. Through comparative analyses of the effectiveness of computer-assisted care and mental health therapeutics, AHRQ is similarly providing communities with valuable guidance on the evidence base of such therapies and interventions.
Recently, federal agencies have increased their attention on adolescents and adults with ASD. Both this Report and the Report to Congress on Young Adults and Transitioning Youth with Autism Spectrum Disorder have highlighted federal efforts to address this population as they age out of the public education system. ED supports several vocational rehabilitation programs to prepare and support young adults as they seek and gain employment. ACL provides assistive technologies that increase the independence of those with communication difficulties. HRSA-supported activities prepare individuals with ASD as the transition from pediatric to adult medical care. Additional research is needed to understand how to best meet the service needs of adults with autism as they continue their education, enter the workforce, seek appropriate housing, and otherwise live their lives to their maximum potential.
Recruiting and retaining trained care practitioners for individuals with ASD has long been an issue; this problem is particularly acute in rural and other underserved communities. Activities at agencies such as CMS, DOJ, DOL, HRSA, HUD, and SSA are identifying and evaluating best practices among services and supports across the country to bolster this workforce. Meanwhile, agencies including DoD, HRSA, IHS, SAMHSA, and NIH are developing practitioner training and disseminating information to individuals and families affected by ASD through toolkits, websites, and telehealth delivery systems to reach more isolated parts of the community.
Federal ASD efforts have greatly benefitted from increased interagency coordination in the period covered by this report. The Interagency Autism Coordinating Committee has engaged new federal partners that bring enhanced insight into services and support systems for individuals with ASD. Several multi-agency efforts, such as Birth to Five: Watch Me Thrive! (ACF, CDC, ED), the Center for Children's Environmental Health (EPA, NIH), and the Accessible Transportation Technologies Research Initiative (ACL, DOT), will combine individual agency expertise in order to maximize effectiveness. The designation of a National Autism Coordinator and the convening of the Federal Interagency Workgroup on ASD (FIWA) has improved collaboration and information-sharing among federal agencies and departments. In particular, the completion of the Report to Congress on Young Adults and Transitioning Youth with ASD has identified key opportunities for enhanced collaboration in federally-funded research and services activities for this population.
To ensure continuing coordination among federal agencies and between federal and private partner organizations, the Interagency Autism Coordinating Committee will continue to provide strategic guidance and a forum for public input into federal planning efforts, helping federal agencies and members of the public work together toward meeting the needs of the autism community. While the collaborative efforts of federal and state agencies and community partners have resulted in many research advances and improvements in services, all acknowledge the growing needs of the community and the work that remains to be done. Continued collaborative efforts between the public and private sectors will be essential to drive the innovations that will lead to improved identification, interventions, services, and policies that will enhance the lives of people with ASD and their families.