Autism—a complex and pervasive developmental disability—usually becomes evident in early childhood, although signs and symptoms vary.According to CDC, autism begins before age 3 and lasts throughout a person’s life. Some children show signs of autism within the first few months of life. In others, symptoms might not appear until 24 months or later. Still other children with autism seem to develop typically until 18 to 24 months of age and then stop gaining new skills or lose the skills they once had. Signs and symptoms of autism include a child not responding to his or her name by 12 months; not pointing at objects to show interest by 14 months; avoiding eye contact and wanting to be alone; repeating words or phrases over and over; and flapping hands, rocking, or spinning in circles. Individuals with autism might have challenges with showing or talking about their feelings and might also have trouble understanding the feelings of others. Diagnosing autism can be difficult; however, early intervention services can greatly improve a child’s development. There is no medical diagnostic test available for autism. As a result, doctors consider a child’s behavior and development to make a clinical diagnosis. By age 2, a diagnosis by an experienced professional can be considered very reliable. However, according to CDC most children do not receive a diagnosis until after age 4. There is no single cause of autism, but a variety of factors are suspected of causing or contributing to autism, including environmental, biological, and genetic sources. While there is no known cure, research shows that early intervention services can greatly improve a child’s development. Because of the complexity of this disorder, individuals with autism have diverse needs for medical and mental health care as well as an array of educational and social services. The CAA authorizes and directs HHS to conduct specific autism-related activities, which may include funding external organizations to conduct these activities through grants, contracts, and cooperative agreements. The CAA amended sections of the Children’s Health Act of 2000—which required HHS to conduct activities related to autism research, surveillance, and coordination—by revising some sections and repealing other sections of that law as well as establishing new requirements.CAA authorized, but did not appropriate, federal funding to carry out these activities in fiscal year 2007 through fiscal year 2011. HHS agencies responded to the CAA with new or continuing autism activities. In fiscal year 2008, HRSA created the Combating Autism Act Initiative in response to specific directives included in the CAA. Through this initiative, HRSA expanded its existing training programs to include an autism-specific component and established new autism research and state grants. HRSA conducts all of its Combating Autism Act Initiative programs under the authority of the CAA. HRSA staff told us that they have not analyzed whether the agency’s new programs could be conducted under other HRSA authority. HRSA expanded two of its preexisting training programs—the Leadership Education in Neurodevelopmental and Other Related Disabilities (LEND) and the Developmental-Behavioral Pediatrics (DBP) training programs— through supplemental funding to existing grantees and awards to new grantees. These two training programs account for the majority of HRSA spending under its Combating Autism Act Initiative; however, HRSA was funding these programs prior to enactment of the CAA.Combating Autism Act Initiative, LEND and DBP grantees are required to include an autism component in their training. Among other things, the programs train health care professionals, such as pediatric practitioners, residents, and graduate students, to provide evidence-based services to children with autism and other developmental disabilities and their families; and train specialists to provide comprehensive diagnostic evaluations to address the shortage of professionals who can confirm or Under the rule out an autism diagnosis. According to HRSA, as a result of these training programs, the number of health professionals enrolled in autism courses increased from 1,887 in academic year 2008-2009 to 4,256 in academic year 2010-2011 and the number of diagnostic evaluations increased from 12,390 in academic year 2008-2009 to 44,102 in academic year 2010-2011. Additionally, HRSA created new autism research programs to fund studies that are intended to advance the current autism knowledge base and lead to improvements in interventions that address the health and well-being of children and adolescents with autism and other developmental disabilities. HRSA also provided grants to establish two research networks that focus on the physical and behavioral health needs of children and adolescents with autism. These networks conduct research on evidence-based practices for interventions, promote the development of evidence-based guidelines for intervention, validate tools for autism intervention, and disseminate information to health professionals and the public, especially families affected by autism. HRSA also funded new state implementation and planning grants to implement plans to improve access to comprehensive, coordinated health care and related services for children and youth with autism and other developmental disabilities. Twenty-two states received grants from fiscal years 2008 to 2011 to implement their autism plans. These plans vary by state, but common elements include a focus on partnerships between professionals and families of children and youth with autism, access to a culturally competent family-centered medical home, access to adequate health insurance and financing of services, early and continuous screening for autism and other developmental disabilities, community services organized for easy use by families, and transition services for youth entering adult health care. Table 1 provides information on the specific autism-related programs HRSA initiated or expanded—by increasing funding and the number of grantees—as a result of the CAA. NIH and CDC continued the autism activities each implemented prior to the enactment of the CAA, but did not create new programs as a direct result of the CAA. Some of these activities had been undertaken in response to the Children’s Health Act of 2000, which, like the CAA, charges NIH with expanding, intensifying, and coordinating research on autism. In addition, under both laws, CDC is required to conduct activities related to establishing regional centers of excellence to collect and analyze certain information on autism. Since the enactment of the CAA, NIH continued to fund, expand, and coordinate autism research through its Autism Centers of Excellence and autism-specific grants and contracts. According to agency officials, NIH awards these grants and contracts under its general Public Health Service Act authorities and not under the specific authorities provided in the CAA.fund its regional centers of excellence for autism epidemiology and other activities, such as an awareness campaign on autism and other developmental disabilities. While enactment of the CAA did not result in any change to CDC’s autism activities, CDC officials stated that the CAA provided additional focus on these efforts. According to CDC officials, the CAA’s enactment also strengthened the agency’s Learn the Signs. Act Early. awareness campaign by elevating the importance of increasing awareness of developmental milestones to national visibility. See appendix I for a list of NIH’s and CDC’s autism efforts. As required by the CAA, the Interagency Autism Coordinating Committee (IACC)—initially established under the Children’s Health Act— restructured its membership and assumed additional responsibilities to coordinate autism efforts within HHS. The CAA reauthorized the IACC and specified that the IACC include both federal and nonfederal members. IACC membership expanded to include 11 nonfederal members that represented individuals with autism and parents of children with autism. In addition, it included members of the autism advocacy, research, and service-provider communities in accordance with the CAA’s membership requirements. The CAA also directed the IACC to develop and annually update a strategic plan and summary of advances in autism research, and monitor federal autism activities. Since fiscal year 2007, the IACC issued several reports as a means to coordinate HHS autism efforts and monitor federal autism activities, some of which were specifically required by the CAA, such as the development of an autism strategic plan and a summary of advances in autism research.appendix II for a description of the documents produced by the IACC. In addition to the changes to the IACC, in 2008, NIH created the Office of Autism Research Coordination (OARC) within the National Institute of Mental Health (NIMH) to coordinate and manage the IACC and related cross-agency activities, programs, and policies. OARC assists the IACC by conducting analyses and preparing reports for the IACC, assisting with the IACC’s strategic planning and autism research monitoring, and providing logistical support for IACC meetings. It also supports communications through the IACC website and press releases, and responds to inquiries from the public and other government agencies.OARC officials told us that although HHS could establish an advisory committee similar to the IACC under other authority, the CAA has provided the IACC with greater visibility and increased involvement of the public and federal agencies, through, for example, the annual update of the IACC’s autism strategic plan. While the CAA authorized appropriations for HRSA, NIH, and CDC autism activities, the CAA did not appropriate funds for this purpose. Instead, to fund these activities, HRSA, NIH, and CDC used funds appropriated to the agencies annually through the budget and appropriations process for the purpose of carrying out a variety of programs. Reinvestment Act of 2009. And, according to CDC officials, the agency redirected a portion of its funding for infant health activities to support pilot projects implementing the agency’s awareness campaign on autism and other developmental disabilities. The IACC’s funding increased significantly from fiscal year 2006 to 2011. From fiscal year 2008 through fiscal year 2011, as directed by Congress in the annual HHS appropriations act, the Secretary of Health and Human Services transferred funds to NIMH for the IACC. From fiscal year 2006 through fiscal year 2011, the IACC also received funds from the annual NIH appropriation. See appendix III for information on the funding for these agencies’ and the IACC’s autism-related activities.