U.S. Department of Health & Human Services
Email Updates Font Size Print Download Reader
Obama Administration’s Commitment to Supporting Individuals on the Autism Spectrum and their Families
The latest figures from the Centers for Disease Control and Prevention (CDC) reaffirm that autism is a critical public health issue that deeply impacts the lives of millions of Americans. The Obama administration recognizes the importance of this health issue and it continues to work to improve the lives of individuals on the autism spectrum and their families by supporting research, improving supports and services, and working closely with the entire community.
Autism is a developmental disability characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors. Early identification and intervention can greatly improve a child’s trajectory in life. Parents should talk with their child’s doctor as soon as possible if they believe there is a possibility that their child has autism or other developmental delays.
The Combating Autism Act and the Interagency Autism Coordinating Committee (IACC)
In 2011, President Obama signed into law the “Combating Autism Reauthorization Act of 2011,” which continues important investments in research, early detection and supports and services for both children and adults on the autism spectrum. It also reauthorizes the Interagency Autism Coordinating Committee (IACC), which is a Federal advisory committee that coordinates all efforts within the Department of Health and Human Services concerning autism and advises the Secretary of Health and Human Services on Federal activities related to autism. Through its inclusion of both Federal and public members, the IACC helps to ensure that a wide range of ideas and perspectives are represented and discussed in a public forum.
On March 29, 2012, we announced the newest members of the Coordinating Committee, including representatives of the diverse individuals and families impacted by autism and related conditions.
Supports and Services for Individuals on the Autism Spectrum and their Families
Through the Combating Autism Act, the Department of Health and Human Services (HHS) is investing in strategies to enable infants, children and adolescents who have, or are at risk for developing, autism and other developmental disabilities to reach their full potential by:
HHS has also partnered with The Arc of the United States to establish a National Resource and Information Center on Autism Spectrum Disorder and Other Developmental Disabilities (Center). The Autism NOW Project (http://www.autismNOW.org ) is collaborating with several partners, including the Autistic Self Advocacy Network, the Autism Society of America and several ADD Network entities to engage and leverage a national network of disability, aging, and family organizations. The Center provides high-quality resources and information related to community-based experiences (e.g. education, employment, recreation, transportation, early intervention and child care), and evidence-based interventions for autism service providers, researchers, families and people with autism and related conditions.
Maternal and Child Health
HRSA’s Maternal and Child Health (MCH) research investments in autism and related conditions include critical efforts that address the health care needs and improve services that result in improved health and well-being of children and adolescents with ASD and other developmental disabilities and their families. Consistent with HRSA’s mission as the access agency to provide services to underserved populations, these autism intervention research programs have a critical role in addressing the needs of underserved populations and barriers to receipt of evidence-based interventions.
Investing in Autism Spectrum Research
In FY 2012, the National Institutes of Health (NIH) invested an estimated $169 million in research on autism and related conditions. This program of research is guided in part by the objectives set out in the IACC Strategic Plan with particular research focus on:
Examples of autism research investments include:
Autism Centers of Excellence (ACE). This NIH-wide program includes six centers, focusing research on risk factors for autism and related conditions, early brain development and functioning, and the biological bases of core autism and related conditions symptoms—repetitive behaviors, communication difficulties, and social impairment—and five networks focusing on causes, characterization, and improved treatment. Data from the ACEs, along with all new NIH-funded autism and related conditions research is expected to be shared through the NIH National Database for Autism Research
National Database for Autism Research. This NIH-supported resource provides qualified autism and related conditions researchers access to an extensive database of biomedical information on individuals with autism and related conditions and their families. Current NDAR users have access to data from 25,000 research participants. Most recently, data from Autism Speaks’ Autism Genetic Resource Exchange (AGRE) and Autism Tissue Program were federated and now share data through NDAR. The data is protected by a Certificate of Confidentiality, which protects the privacy of study participants.
Identifying autism and related conditions Risk-Factors. NIH-supported research has continued to investigate the causes of autism and related conditions and in particular the possible role that environmental risk-factors may play in causing autism and related conditions, particularly with regard to how genetic vulnerability and environmental exposures may place individuals at greater risk for autism and related conditions.
Screening and diagnosis of autism and related conditions. Findings from NIH-supported research are shedding new light on how cognition differs among children with autism and related conditions in comparison to children who do not have autism and related conditions, as well as how new tools might help clinicians and researchers identify infants and toddlers potentially at-risk for autism and related conditions.
Research to improve services and interventions for autism and related conditions. NIH has encouraged and supported cutting-edge research to address the need for services and behavioral interventions needed by individuals with autism and related conditions and their families such as studies of behavioral interventions among very young toddlers; studies of social skills intervention for high functioning children with autism and related conditions and tools to help youth with autism and related conditions or other disabilities develop and maintain skills needed for successful employment.
Autism Intervention Research Networks on Behavioral Health and Physical Health. The Autism Intervention Research Networks on Behavioral Health (AIR-B) and Physical Health (AIR-P) conduct research on evidence-based practices, develop and update guidelines, validate tools for interventions, and disseminate critical information.
Developmental Behavioral Pediatrics Research Network (DBPNet). In addition to NIH’s investments, HHS’s Health Resources and Services Administration is implementing the Developmental Behavioral Pediatrics Research Network The DBPNet ($200,000 per year to Children’s Hospital of Philadelphia) has established a collaborative multi-center scientific and clinical research network that promotes coordinated research activities and addresses health issues for children with autism and related conditions and other developmental disabilities across 12 sites.
Supporting State Efforts to Address Autism:
State Councils and Protection and Advocacy Systems. These entities partner with state governments, local communities, self-advocates, family members and the private sector to help people with developmental disabilities reach their maximum potential through greater independence, productivity and increased integration in their communities.
State Protection and Advocacy Agencies. The State Protection and Advocacy Agencies (P&As) provide services to individuals with developmental disabilities based on the Developmental Disabilities Assistance and Bill of Rights Act of 2000. These efforts include: the protection and advocacy of legal and human rights; information and referral; investigation of complaints of violation of rights of individuals with developmental disabilities, including autism; working to resolve complaints through mediation, alternative dispute resolution and litigation. In FY 2012, $40.9 million was invested in these efforts.
State Councils on Developmental Disabilities. The State Councils on Developmental Disabilities (SCDD) are charged with identifying the most pressing needs of people with developmental disabilities in their state or territory. Councils work to address these needs through systems change and capacity building efforts that promote self-determination, integration and inclusion for people with developmental disabilities. SCDD efforts include: training; technical assistance; barrier elimination; coalition development and citizen participation; informing policymakers; advocacy, capacity building and systems change; demonstration of new approaches to services and supports. In FY 2012, $74.8 million in federal funding was invested in these efforts.
Medicare & Medicaid and Autism and Related Conditions
The Centers for Medicare & Medicaid Services (CMS) provides a wide array of health-related services to beneficiaries with autism and related conditions enrolled in Medicaid, Medicare, and the Children’s Health Insurance Program.
The Medicaid program in particular supports children, youth, and adults with autism and related conditions who have limited income and resources, and meet certain eligibility criteria. Because Medicaid is a State-based program, available care and services may vary from State to State, and according to age. In addition to physical health services, Medicaid programs provide strong support for community living through home and community-based services such as respite care and employment supports. A list of Medicaid “waiver” and demonstration programs, some that assist people with autism and related conditions, is available at: http://www.cms.gov/MedicaidStWaivProgDemoPGI/MWDL/list.asp?intNumPerPage=all.
CMS has also engaged in research on autism and related conditions services, publishing a 2010 environmental scan describing the evidence base on autism services, available at: http://www.impaqint.com/files/4-content/1-6-publications/1-6-2-project-reports/finalasdreport.pdf and a 2011 report that described autism services activity in nine states: http://www.cms.gov/apps/files/9-State-Report.pdf . CMS is developing a “State of the States” report to present quantitative and qualitative data on autism services across the United States, expected in late 2012.
The Affordable Care Act and Autism and Related Conditions
The Affordable Care Act contains important provisions for individuals with autism and related conditions and their families. Under the new health care law:
Department of Education
Department of Labor
If You’re Concerned – Help is Available
If you think your child might have autism or related condition or you think there could be a problem with the way your child plays, learns, speaks, or acts, contact your child’s doctor, and share your concerns.
If you or the doctor is still concerned, ask the doctor for a referral to a specialist who can do a more in-depth evaluation of your child. Specialists who can do a more in-depth evaluation and make a diagnosis include:
At the same time, call your state’s public early childhood system to request a free evaluation to find out if your child qualifies for intervention services. This is sometimes called a Child Find evaluation. You do not need to wait for a doctor’s referral or a medical diagnosis to make this call.
Where to call for a free evaluation from the state depends on your child’s age: