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Report to Congress on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities Under the Combating Autism Act of 2006 and Combating Autism Reauthorization Act of 2011 (FY 2010 - FY 2012)

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Introduction

Autism Spectrum Disorder

Autism spectrum disorder (ASD) is a neurodevelopmental condition characterized by persistent impairments in social communication and social interaction, including impaired verbal and nonverbal communication skills and social interactions, restricted, repetitive, and stereotyped patterns of behavior, and difficulty in developing, maintaining, and understanding relationships with others. Depending on the level of severity of the impairments in different areas, ASD can range in overall impact from mild impairment to significantly disabling. Research suggests that ASD may arise very early in brain development, but overt signs and symptoms of ASD usually emerge between 1 and 3 years of age. ASD is a condition that lasts throughout life, but in some individuals, impairments can improve or change to varying degrees over time. Interventions and other services and supports are available to help improve the quality of life for children and adults with ASD, but the needs for earlier identification, improved interventions, and broadly available access to services remain a challenge. With the current prevalence of ASD in the U.S. estimated at 1 in 88 children, ASD continues to be a top national health priority, engaging the collaborative efforts of both federal agencies and private organizations to advance research and improve services to assist individuals and families affected by ASD.1 This report describes the work being done through programs and activities supported by multiple federal departments and agencies to address medical, educational, service and other related needs in order to improve quality of life for children, adolescents and adults on the autism spectrum.

Legislative Background

The Combating Autism Act (CAA) of 2006 (P.L. 109-416, PDF - 142 KB) was enacted on December 19, 2006 to address public concerns about the increasing prevalence of autism spectrum disorder (ASD) and to strengthen federal efforts around this issue. The CAA amended the Public Health Service Act (PDF - 4 MB) to authorize the expansion and enhancement of activities related to ASD research, surveillance, early detection, prevention, treatment, education, and disability programs. The law also reconstituted the Interagency Autism Coordinating Committee as a federal advisory body with specific membership requirements and a charge to provide federal coordination of ASD-related activities, as well as a venue for public input on issues related to ASD. Additionally, the CAA required the Department of Health and Human Services (HHS), in conjunction with the Department of Education, to submit, no later than 4 years after the enactment of the CAA, a Report to Congress on the progress made in implementing provisions of the CAA. This report, the Report to Congress on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities under the Combating Autism Act of 2006 (FY 2006 - FY 2009),2 was submitted in accordance with the requirement. Finally, the CAA authorized $945 million in federal funds to support ASD-related federal efforts through 2011.

On September 30, 2011, Congress enacted the Combating Autism Reauthorization Act (CARA) of 2011 (P.L. 112-32, PDF - 121 KB), which extended the authorizations of the CAA past its sunset date of September 30, 2011 to September 30, 2014. This ensured the continuation of programs authorized by the CAA for another 3 years. Under CARA's provisions, Section 399DD was amended to state, "Not later than 2 years after the date of enactment of the Combating Autism Reauthorization Act of 2011, the Secretary in coordination with the Secretary of Education, shall prepare and submit to the Health, Education, Labor, and Pensions Committee of the Senate and the Energy and Commerce Committee of the House of Representatives a progress report on the activities related to autism spectrum disorder and other developmental disabilities." The CARA also authorized $693 million in federal funds to support ASD-related federal efforts through 2014.

Provisions of the Combating Autism Act of 2006 and Combating Autism Reauthorization Act of 2011

  • Authorizes NIH to expand, intensify, and coordinate ASD research activities, subject to the availability of appropriations, and consolidate research programs to enhance efficiency.
  • Authorizes CDC to conduct ASD and developmental disabilities surveillance and research programs.
  • Increases federal efforts in autism education/awareness, early detection, and intervention, including efforts to increase cultural competency and provider training across several agencies/programs within HHS, including HRSA and ACF, and the Department of Education.
  • Reconstitutes the Interagency Autism Coordinating Committee to coordinate all ASD-related efforts within the HHS, serve as a forum for public input, and provide advice to the Secretary of Health and Human Services on matters pertaining to ASD.
  • Requires a Report to Congress on progress made in implementing the provisions of the CAA.
  • Authorizes $1.64 billion in appropriations for federal ASD-related efforts through September 30, 2014.

Requirements for the CAA Report to Congress

The Combating Autism Act and the Combating Autism Reauthorization Act require reports on federal ASD activities to be submitted to Congress. The following elements are required:

As stated in the CAA, the Report to Congress shall contain the following—

  1. "A description of the progress made in implementing the provisions of the Combating Autism Act of 2006"
  2. "A description of the amounts expended on the implementation of the particular provisions of Combating Autism Act of 2006"
  3. "Information on the incidence of autism spectrum disorder and trend data of such incidence since the date of enactment of the Combating Autism Act of 2006"
  4. "Information on the average age of diagnosis for children with autism spectrum disorder and other disabilities, including how that age may have changed over the 4-year period beginning on the date of enactment of this Act"
  5. "Information on the average age for intervention for individuals diagnosed with autism spectrum disorder and other developmental disabilities, including how that age may have changed over the 4-year period beginning on the date of enactment of this Act"
  6. "Information on the average time between initial screening and then diagnosis or rule out for individuals with autism spectrum disorder or other developmental disabilities, as well as information on the average time between diagnosis and evidence-based intervention for individuals with autism spectrum disorder or other developmental disabilities"
  7. "Information on the effectiveness and outcomes of interventions for individuals diagnosed with autism spectrum disorder, including by various subtypes, and other developmental disabilities and how the age of the child may affect such effectiveness"
  8. "Information on the effectiveness and outcomes of innovative and newly developed intervention strategies for individuals with autism spectrum disorder or other developmental disabilities"
  9. "Information on services and supports provided to individuals with autism spectrum disorder and other developmental disabilities who have reached the age of majority (as defined for purposes of section 615(m) of the Individuals with Disabilities Education Act (20 U.S.C. 1415(m))"

Previous Report to Congress (FY 2006 – FY 2009)

In 2010, the Office of Autism Research Coordination within the National Institute of Mental Health/NIH prepared the Report to Congress required by the Combating Autism Act of 2006 on behalf of the Office of the Secretary of Health and Human Services. The report was submitted to Congress by HHS in December 2010 and was published on the Interagency Autism Coordinating Committee's website for public access. The Report to Congress on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities under the Combating Autism Act of 2006 (FY 2006 – FY 2009)2 describes the efforts of the Interagency Autism Coordinating Committee (IACC), the Department of Education, and eight individual agencies within the Department of Health and Human Services with regard to progress and expenditures made in autism spectrum disorder (ASD) research and services in fiscal years 2006 through 2009. The report also highlights federal research and services activities related to prevalence of ASD, diagnosis and intervention, early screening and intervention, effectiveness and outcomes of interventions and innovative strategies, and services and supports for children and adults. The summary and highlights of the Report to Congress on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities under the Combating Autism Act of 2006 (FY2006-FY 2009) can be found in Appendix ii of this report.

Report to Congress (FY 2010 – FY 2012)

The Report to Congress on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities Under the Combating Autism Act of 2006 and Combating Autism Reauthorization Act of 2011 (FY 2010 – FY 2012) includes updates from the Interagency Autism Coordinating Committee and agencies within the Department of Health and Human Services and from the Department of Education, as required by the CAA and CARA, as well as updates from the Department of Defense and the National Science Foundation. This report describes ASD-related activities and coordination efforts that span multiple federal agencies and departments. The report covers all of the elements required in the CAA/CARA for the period of fiscal years 2010-2012. Some information regarding federal programs and projects in FY 2013 is included in this report, but it should be noted that the information pertaining to FY 2013 may not be complete, as FY 2013 was still underway as this report was being developed.

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NIH publication No. 14-8012

Copyright Information
All material appearing in this report is in the public domain and may be reproduced or copied. A suggested citation follows.

Suggested Citation
U.S. Department of Health and Human Services, Office of Autism Research Coordination, National Institutes of Health (On behalf of the Office of the Secretary). Report to Congress on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities Under the Combating Autism Act of 2006 and Combating Autism Reauthorization Act of 2011 (FY 2010 – FY 2012). February 2014. Retrieved from the Department of Health and Human Services Interagency Autism Coordinating Committee website at: http://iacc.hhs.gov/reports/reports-to-congress/FY2010-2012/index.shtml

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