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)Skip Over Navigation Links Skip Over Navigation Links
- Interagency Coordination
- Required Elements of the Report to Congress (FY 2010 - FY 2012)
- ASD Progress and Expenditures
- Department of Health and Human Services & Department of Education
- Department of Health and Human Services
- Administration for Children and Families (ACF)
- Administration for Community Living (ACL)
- Agency for Healthcare Research & Quality (AHRQ)
- Centers for Disease Control and Prevention (CDC)
- Centers for Medicare & Medicaid Services (CMS)
- Food and Drug Administration (FDA)
- Health Resources and Services Administration (HRSA)
- National Institutes of Health (NIH)
- Substance Abuse and Mental Health Services Administration (SAMHSA)
- Department of Education (ED)
- Other Agencies and Departments
- Prevalence of Autism Spectrum Disorder
- Average Age of Diagnosis
- Average Age for Intervention
- Average Time between Screening, Diagnosis, and Intervention
- Effectiveness and Outcomes of Interventions
- Agency for Healthcare Research Quality (AHRQ)
- Centers for Medicare & Medicaid Services (CMS)
- Department of Defense (DoD)
- Department of Education (ED)
- Health Resources and Services Administration (HRSA)
- National Institutes of Health (NIH)
- Substance Abuse and Mental Health Services Administration (SAMHSA)
- Adult Services and Supports
- Agency for Healthcare Research Quality (AHRQ)
- Centers for Medicare & Medicaid Services (CMS)
- Department of Defense (DoD)
- Department of Education (ED)
- Health Resources and Services Administration (HRSA)
- National Institutes of Health (NIH)
- Substance Abuse and Mental Health Services Administration (SAMHSA)
- Appendix i. List of Acronyms
- Appendix ii. 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): Summary & Highlights
- Appendix iii. CDC-supported Autism Publications (2010 to August 2013)
ASD Progress and Expenditures
This chapter covers subsections (1) and (2) of Section 399DD of the CAA, which require: (1) "A description of the progress made in implementing the provisions of the Combating Autism Act of 2006", and (2) "A description of the amounts expended on the implementation of the particular provisions of the Combating Autism Act of 2006." In accordance with the statute, details are provided from the agencies and offices within HHS that are involved in ASD research and services activities, including ACF, ACL, AHRQ, CDC, CMS, FDA, HRSA, NIH, and SAMHSA, as well as the Department of Education (ED), Environmental Protection Agency (EPA), Department of Defense (DoD), and National Science Foundation (NSF), which also conduct activities that concern or are related to ASD.
The Department of Health and Human Services
The mission of the Department of Health and Human Services (HHS) is to help provide the building blocks that Americans need to live healthy, successful lives. This mission is fulfilled by providing millions of children, families, and seniors with access to high-quality health care, by helping people find jobs and parents find affordable child care, by keeping the food on Americans' shelves safe and infectious diseases at bay, and by pushing the boundaries of how to diagnose and treat disease. Several agencies within HHS support research and services that address the needs of the people with ASD and their families.
Administration for Children & Families (ACF)
The Administration for Children & Families (ACF) promotes the economic and social well-being of families, children, individuals and communities. ACF programs aim to:
- Empower families and individuals to increase their economic independence and productivity
- Encourage strong, healthy, supportive communities that have a positive impact on quality of life and the development of children
- Create partnerships with front-line service providers, states, localities, and tribal communities to identify and implement solutions that transcend traditional program boundaries
- Improve access to services through planning, reform and integration
- Address the needs, strengths and abilities of vulnerable populations including people with developmental disabilities, refugees and migrants
The ACF does not have any programs or funding specifically focused on provisions of the CAA or for individuals on the autism spectrum. However, ACF funds Head Start services for children with ASD. Table 2 outlines the total funds spent on Head Start services for children with ASD between 2010 and 2012. Head Start promotes the school readiness of children ages birth to 5 from low-income families, including those with ASD, by enhancing their cognitive, social and emotional development. In April of 2013, ACF launched a web page titled "Autism Awareness and Acceptance in Early Childhood Education," which is focused on providing information on ASD to early childhood teachers. The webpage includes fact sheets, helpful tips, advice on finding local resources, and links to multiple relevant websites. The tip sheets, compiled by ACF and the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) at the NIH, contain numerous strategies for working with children with ASD, suggested by experts from across the country. In addition, the site contains a video of a speech given by Linda Smith, the ACF Deputy Assistant Secretary for Early Childhood Development, and a speech in Spanish by Wilma Pastrana, First Lady of Puerto Rico, emphasizing the importance of autism awareness and acceptance.
In addition to the ASD site, ACF has named developmental and behavioral screening a priority in its strategic plan, The ACF Strategic Initiatives. While the focus of this priority in the ACF strategic plan is broad developmental and behavioral screening, rather than screening for specific disorders, the initiative will help inform the early childhood field and ultimately help children with all disabilities, including those with ASD. As part of ACF's activities in this domain, in FY 2012, ACF provided $100,000 in funding to examine the use of a first line screening instrument on Native American reservations. The instrument under study includes, as part of a broader screen of development, an ASD screen. The funds were added to an existing contract with the Tribal Research Council and will serve to assess the cultural sensitivity of each individual item in the screening instrument. Of note, this is the first time a developmental and behavioral screening instrument has been tested or culturally adapted to fit the needs of young Native American children.
The ACF Office of Refugee Resettlement (ORR) helps new populations immigrating into the United States to maximize their potential, providing people in need with critical resources to assist them in becoming integrated members of American society. Resources disseminated by ORR include ASD-related materials developed by ACF and CDC (i.e., Learn the Signs. Act Early) to assist families with recognizing and addressing autism-related needs. ORR is also planning a webinar for its stakeholders on ASD in 2014.
In addition to the activities described above, ACF participates as a member agency on the Interagency Autism Coordinating Committee.
ACF Head Start Funding for ASD-related Activities
|FY 2010||FY 2011||FY 2012||FY 2010-FY 2012|
|Head Start funding for children with ASD||$16.8 M||$19 M||$22.3 M||$58.1 M|
Table 2. Administration for Children & Families Head Start Expenditures for Children with ASD, FY 2010-2012 (Millions).
Administration for Community Living (ACL)
On April 16, 2012, the U.S. Department of Health and Human Services combined the Administration on Intellectual and Developmental Disabilities (AIDD), the Administration on Aging, and the Office on Disability into a new agency called the Administration for Community Living. In addition, the Administration on Intellectual and Developmental Disabilities was known formerly as the Administration on Developmental Disabilities.
The Administration for Community Living (ACL)/Administration on Intellectual and Developmental Disabilities (AIDD) does not receive any appropriations under the Combating Autism Act, and therefore has no direct program or research responsibilities funded by CAA. However, ACL/AIDD programs do serve and support a full range of individuals with disabilities, including those with ASD, through several programs with resources appropriated under the Developmental Disabilities Assistance and Bill of Rights Act of 2000 (P.L. 106-402). These programs are described in this section of the report. Funding from FY 2010-FY 2012 for Autism NOW, a program supported by the AIDD-administered Projects of National Significance that specifically addresses the needs of people on the autism spectrum, can be found in Table 3.
State Councils on Developmental Disabilities (SCDD)
Each state and territory has a Developmental Disabilities Council (DDC) supported by ACL's Administration on Intellectual and Developmental Disabilities (AIDD) that functions to increase the independence, productivity, inclusion, and community integration of people with intellectual and developmental disabilities, including individuals with autism. Council members are appointed by the governor and composed of key stakeholders, including individuals with intellectual and developmental disabilities, parents and family members, and representatives of state agencies and non-governmental organizations that provide services to people with intellectual and developmental disabilities. DDC activities support a variety of systems change and capacity building efforts, including projects demonstrating new ideas for enhancing people's lives, training activities, community education and support, making information available to policy-makers, and working to eliminate barriers to full participation in various life areas such as education, employment, and community living.
Protection and Advocacy Agencies (P&A)
ACL/AIDD supports a Protection and Advocacy (P&A) Agency in each state and territory and a P&A for Native Americans. P&As empower, protect, and advocate on behalf of persons with intellectual and developmental disabilities, including individuals with autism. The P&As are independent of service-providing agencies. They offer a range of services to enhance the quality of life of people with developmental disabilities and resolve problems for individuals and groups of clients, including information and referral for legal, administrative, and other remedies and investigations of incidents of abuse and neglect and discrimination based on disability. The P&As provide an annual opportunity for the public to comment on the objectives and priorities of the system. This gives clients and others in the community an opportunity to voice their needs to the P&A.
University Centers for Excellence in Developmental Disabilities Education, Research and Service (UCEDD)
The University Centers for Excellence in Developmental Disabilities Education, Research and Service (UCEDD) is a grant program of ACL/AIDD that provides a national network of University Centers that conduct interdisciplinary training, exemplary community services, research, and information dissemination activities. This network of 68 University Centers throughout the states and territories positively affects the lives of individuals with developmental disabilities, including individuals with autism and their families, by increasing their independence, productivity, and integration into communities. University Centers engage in a variety of initiatives to address the needs of individuals with ASD. Examples include:
- Over 30 UCEDDs receive Leadership Education in Neurodevelopmental and Related Disabilities (LEND) grants funded under the 2006 Combating Autism Act and administered by the Health Resources and Services Administration's (HRSA) Maternal and Child Health Bureau (MCHB). LEND programs provide long-term, graduate level interdisciplinary training as well as interdisciplinary services and care.
- Multiple UCEDDs provide community-based services such as the Alaska UCEDD's Multidisciplinary Diagnostic Team and Comprehensive Referral for Autistic Spectrum Disorders project that screens, diagnoses, and refers children with autism spectrum disorder and other developmental disabilities.
- UCEDDs are a engaged in a variety of research efforts, such as the Sustainable Implementation of Family-Centered Transition Planning for Young Adults with Autism Spectrum Disorders study co-implemented by the University of New Hampshire Institute on Disability and the University of Maine Center for Community Inclusion and Disability Studies to develop a sustainable process for implementing a Family-Centered Transition Planning model for youth and young adults with ASD.
- UCEDDs maintain a variety of information dissemination activities, which include newsletters specific to autism and webpages that provide resources on autism. UCEDDs also develop presentations to different audiences on autism and provide resources on issues specific to autism across the age span. The Tarjan Center at the University of California, Los Angeles, recently released the PEERS Virtual Coach mobile application, which is a companion to Dr. Elizabeth Laugeson's new book, The Science of Making Friends, and contains important skills, strategies, role-play videos, and tools for making and keeping friends all within a mobile device.
Projects of National Significance (PNS)
The Projects of National Significance (PNS) program, administered by ACL/AIDD, awards grants and contracts that promote and increase the independence, productivity, inclusion, and integration into the community of persons with developmental disabilities. These projects focus on the most pressing issues for people with developmental disabilities across the country. These projects may involve data collection and analysis, research, technical assistance, projects which improve supportive living and quality of life opportunities, projects to educate policymakers, and efforts to create interagency federal collaboration.
With funding from PNS, the Autism NOW National Autism Resource and Information Center began in October 2010 as part of a national initiative of The Arc of the United States. The initiative seeks to empower stakeholders by providing access to high-quality resources and information on community-based services and interventions for people with ASD and their families, through a national dissemination network, regional events, training and technical assistance, and an innovative web presence.
In April 2011, the Autism NOW website was launched. The website provides a dynamic and interactive, highly visible, and effective central point of quality resources and information for members of the autism community. Autism NOW has reached thousands of individuals—including parents and family members, individuals with autism spectrum disorder and other developmental disabilities, advocates, and policymakers—through its website, Facebook and Twitter pages, webinars, summits and conferences, e-newsletters, and personal interactions.
Autism NOW hosts free webinars, allowing self-advocates, families, and professionals to discuss a wide variety of topics affecting autism spectrum disorder and other developmental disabilities. In addition to its online presence, in 2011 Autism NOW conducted five regional summits across the United States that emphasized and created a safe environment for sharing experiences and building community. A total of 650 individuals attended the five summits. After the summits, Autism NOW gathered lessons learned and developed a report, "Light at the End of the Tunnel," (PDF - 528 KB) which was released in December 2011. The report provides demographic information on summit registrants, survey results from attendees, and quotations resulting from round table discussions.
Autism NOW also produces resources such as its employment handbook, An Autistic View of Employment. (PDF - 1.9 MB) This tool aims to help self-advocates better navigate the world of employment. It contains stories, advice, and the perspectives of self-advocates on various aspects of the employment process. Topics covered include the Americans with Disabilities Act, vocational rehabilitation, characteristics of good managers, disclosure and self-care, employment scams, clear communication, and networking.
In 2012, Autism NOW began offering an answer series using YouTube. Visitors to the Autism NOW website can submit questions, and each month experts select two questions and provide 2–4 minute video answers. Topics have included assistive technology and how it can help an individual with an intellectual or developmental disability, self-advocacy, how to obtain a driver's license, and how parents can talk to their son or daughter about sex.
President's Committee for People with Intellectual Disabilities (PCPID)
The President's Committee for People with Intellectual Disabilities (PCPID) is a federal advisory committee to the President and the Secretary of Health and Human Services on matters relating to persons with intellectual disabilities. The PCPID promotes policies and initiatives that support independence and lifelong inclusion of people with intellectual disabilities in their respective communities. The Administration on Intellectual and Developmental Disabilities (AIDD) provides oversight and support for PCPID, which comprises 34 members, including 21 citizen members and thirteen ex officio (heads of cabinet level departments of government) members. A variety of individuals are appointed as citizen members, including individuals with intellectual and developmental disabilities, parents and family members of the individuals with intellectual and developmental disabilities, scientists and professionals employed in the field of intellectual and developmental disabilities, community and business representatives, and systems advocates.
Aging & Disability Resource Centers Program
As the dynamics of care changes considerably with age (both for individuals with autism and that of their caregivers) one of the important issues in autism concerns the provision of appropriate services for older adults with autism. ACL's Aging & Disability Resource Centers Program is a collaborative effort of ACL, CMS, and the Veterans Health Administration (VHA). The program supports state efforts to streamline access to long-term services and support (LTSS) options for older adults and individuals with disabilities, including those with autism spectrum disorder.
In addition to the activities described above, ACL participates as a member agency on the Interagency Autism Coordinating Committee.
ACL/AIDD Funding for Autism NOW Program
|Program||FY 2010||FY 2011||FY 2012||FY 2010-FY 2012|
Table 3. Administration for Community Living (ACL)/Administration on Intellectual and Developmental Disabilities (AIDD) Autism NOW Expenditures FY 2010-2012 (Millions).
Agency for Healthcare Research and Quality (AHRQ)
The Agency for Healthcare Research & Quality (AHRQ) was not named in and did not receive an authorization in the CAA, and has no specific initiatives to implement the CAA. However, AHRQ has supported and continues to support a number of projects with direct relevance to ASD, including the following:
National Patterns in the Outpatient Pharmacological Management of Children and Adolescents with Autism Spectrum Disorder: A recent AHRQ-supported study found that there has been a recent and significant national increase in outpatient psychotropic treatment of young people with ASD. By 2001-2005, psychotropic medicines were prescribed in almost 80 percent of ASD visits, with stimulants, antidepressants, and antipsychotics as the most commonly prescribed medication classes.
- AHRQ Hospital Cost and Utilization Project (HCUP): In 2011, AHRQ published a report on the number of hospitalizations during 2008 and trends in hospitalizations by gender for "Autism/Other Childhood Disorders." Among males, hospitalizations for "Autism/Other Childhood Disorders" ranked the highest of all hospitalizations for mental health and substance abuse disorders.
- U.S. Preventative Services Task Force (USPSTF): AHRQ also provides administrative, research, technical, and dissemination support to the U.S. Preventive Services Task Force (USPSTF), an independent panel of non-federal experts in prevention and evidence-based medicine that conducts scientific evidence reviews of a broad range of clinical preventive health care services (such as screening, counseling, and preventive medications) and develops recommendations for primary care clinicians and health systems. The USPTF is composed of primary care providers (such as internists, pediatricians, family physicians, gynecologists/obstetricians, nurses, and health behavior specialists). This body periodically issues "Recommendation Statements" directed at primary care providers to guide them on issues concerning preventive services in primary care. USPSTF recommendations highlight the opportunities for improving delivery of effective services and have helped others provide preventive care in different populations. USPSTF recommendations have also formed the basis of the clinical standards for many professional societies, health organizations, and medical quality review groups. In 2013, the USPSTF prepared and posted a draft research plan on "Screening for Autism Spectrum Disorder in Young Children" for public comment. The research plan, when it is finalized, will be used to guide a systematic review of the evidence by researchers at an Evidence-based Practice Center. The resulting Evidence Report will form the basis of the USPSTF Recommendation Statement on this topic.
- Computer Assisted Autism Care (CAAC): In this AHRQ-funded project, investigators employed a novel decision support system for implementing clinical guidelines in pediatric practices, known as CHICA (Child Health Improvement through Computer Automation), to aid in ASD screening, diagnosis, and treatment parameters. To evaluate the effect of the CHICA system on ASD treatment and management, researchers assessed children between the ages of 18 months and 5 years with a formal diagnosis of ASD.12
- Innovative Adaptation & Dissemination of CER Products: Autism (iADAPT-ASD): This project will create a website that demonstrates, through state-of-the-art, high definition video, the best practices for treating autism, based on the AHRQ comparative effectiveness report on Therapies for Children with Autism Spectrum Disorders. The website will provide information to parents, educators, and clinicians, to enable them to make more informed decisions about treatments.
- Comparative effectiveness of therapies for children with autism spectrum disorders: Focused on children ages 2-12 years with ASDs, this AHRQ-funded review assessed the comparative effectiveness of therapies including behavioral, educational, medical, allied health, and complementary and alternative medicine (CAM) interventions.
- Comparative effectiveness of interventions for adolescents and young adults with autism spectrum disorders: Focused on adolescents and young adults, ages 13-30 years with ASD, this AHRQ-funded review assessed the comparative effectiveness of therapies including behavioral, educational, medical, allied health, and complementary and alternative medicine (CAM) interventions.
- Center for Education and Research on Mental Health Therapeutics (CERTs): The Mental Health CERTs will build on strong existing collaborations to create a coherent, multidisciplinary program targeting improvement of outcomes of psychotropic medication use. It aims to become a national resource on mental health therapeutics, trusted for its expertise and its independent, rigorous, and objective work. It will bring together outstanding research teams to develop and implement strategies for improving treatment patterns and outcomes in problem areas selected for impact on a population basis, emphasizing the large populations receiving care through major public programs such as Medicare and Medicaid. Most of the work in this grant is on treatment of children with antipsychotics, which includes children with autism, and has led to several research articles such as "National patterns in the outpatient pharmacological management of children and adolescents with autism spectrum disorder."13
- Partnership for Sustainable Research and Dissemination of Evidence-based Interventions: Initiated in 2013, this AHRQ-supported partnership proposes to build new and/or enhance existing capacity in research and dissemination infrastructure that will bridge the gap between clinical and health services research and everyday practice. This collaboration aims to build a knowledge base about how to improve the translation and dissemination of evidence-based health information, interventions, and clinical practices to populations not traditionally reached by such information or practice.
In addition to the activities described above, AHRQ participates as a member agency on the Interagency Autism Coordinating Committee.
AHRQ ASD-Research Funding (FY 2010 – FY 2012)
|Project||FY 2010||FY 2011||FY 2012||Total Funding||ARRA funded|
|Computer Assisted Autism Care (CAAC)||$489,000||$492,000||$490,000||$1,471,000
|Innovative Adaptation & Dissemination of CER Products: Autism (iADAPT-ASD)||$1,486,000||n/a||n/a||$1,486,000
|Center for Education and Research on Mental Health Therapeutics||$800,000||n/a||n/a||$800,000
|Comparative effectiveness of interventions for adolescents and young adults with autism spectrum disorders||$625,000||n/a||n/a||$625,000
|Comparative effectiveness of therapies for children with autism spectrum disorders||n/a||n/a||n/a||$575,000
Table 4. AHRQ-Supported ASD Research FY 2010-2013.
Centers for Disease Control and Prevention (CDC)
The Centers for Disease Control and Prevention (CDC) brings a unique epidemiologic perspective to the effort to fully understand autism spectrum disorder (ASD). This perspective includes reporting data on the occurrence of ASD, contributing to the understanding of risk and protective factors, and working to improve early identification of ASD and other developmental disabilities. CDC conducts both intramural (internal) and extramural (i.e., grant and contract) activities and partners with grantees, federal and state governments and programs, and other stakeholders in these activities. CDC also serves on the Interagency Autism Coordinating Committee (IACC) and both of its subcommittees.
Recognizing the importance of CDC's unique public health role, the Children's Health Act (CHA) of 2000 (P.L. 106-310, PDF - 49 KB) established a scientific infrastructure at CDC for conducting population-based ASD monitoring and research. The Combating Autism Act (CAA) of 2006 (PDF - 142 KB) further strengthened and expanded this infrastructure, affording CDC the ability to conduct ongoing monitoring of ASD over time and across multiple geographic regions of the United States. The Combating Autism Reauthorization Act (CARA) of 2011 (PDF - 121 KB) reauthorized the CAA of 2006 for an additional 3 years, through September 30, 2014. Although the CAA and CARA only provided additional legislative authority to bolster ongoing CDC autism-related activities that were already authorized, the CAA provided the only authorization to support the establishment of the Interagency Autism Coordinating Committee (IACC), an advisory body that has greatly improved communication and coordination among federal agencies and non-federal member organizations in addressing autism issues.
While the CAA/CARA did not provide any new appropriations for CDC's autism work, it supported the implementation of a major, multisite collaborative study conducted by the Centers for Autism Developmental Disabilities Research and Epidemiology (CADDRE), examining what might put children at risk for ASD and other developmental disabilities. The CAA/CARA supported expansion of surveillance to include younger children with ASD and has supported ongoing international efforts through collaboration with Denmark to broaden our understanding of ASD. The CAA/CARA also strengthened CDC's legislative authority for "Learn the Signs. Act Early" (LTSAE) by elevating the national visibility of the importance of increasing awareness of developmental milestones. CAA/CARA further strengthened the capacity of the LTSAE program in educating parents, health care professionals, and early childhood educators about the importance of monitoring a child's developmental milestones, seeking further evaluation when there is a concern, and beginning early intervention services as soon as possible.
Surveillance and Epidemiology
In the time since the enactment of the CAA, CDC has built critical infrastructure to further advance understanding of ASD and has seen these efforts come to fruition. The Autism and Developmental Disabilities Monitoring (ADDM) Network has published the most comprehensive estimates to date of the prevalence of ASD in multiple areas of the United States. CDC has coordinated the ADDM Network to characterize the prevalence and population characteristics of children with ASD in collaboration with State Health Departments or their representatives. The ADDM Network currently conducts surveillance of ASD and other developmental disabilities in 12 geographic areas of the United States. In 2007, CDC published the first estimate of ASD prevalence across multiple areas of the U.S. In 2009 and 2012, CDC published updated ASD prevalence reports and plans to continue publishing these reports every few years.14, 15, 16
These three reports, which cover an eight year span of time and include children born in the 1990s and forward, have informed the understanding of ASD prevalence and the characteristics of children with ASD. They are routinely used to inform policy, improve service provision, and conduct further analyses to understand ASD among the population. A robust dataset now exists which can be used to examine trends in ASD prevalence over time. In addition, these data have been used to better characterize who may be at greater risk for ASD (see Appendix iii. for a full list of CDC-supported ASD publications).
CDC is also leading more focused epidemiologic studies. In October 2010, a member of the public gave testimony at a meeting of the Interagency Autism Coordinating Committee regarding her concerns about the prevalence of ASD among Somali-American children in Minneapolis, Minnesota (where Somali-American children had recently been shown in a study to be up to seven times more likely to receive autism services than their peers, suggesting that autism may be more prevalent in this population). In response to this testimony, several IACC member agencies coordinated efforts to launch a research project that would examine disparities in ASD prevalence and children's participation in special education programs in Minneapolis. Co-funded by the NIH and Autism Speaks through an Association of University Centers on Disabilities (AUCD) research grant in 2011, the CDC National Center on Birth Defects and Developmental Disabilities (NCBDDD) assumed a lead role in investigating this issue in collaboration with the University of Minnesota's Leadership Education in Neurodevelopmental and Related Disabilities (MN LEND) program. Researchers conducting the Minneapolis Autism Prevalence Study are now evaluating autism rates in Somali-American children ages 7-9 years and that of age-matched children in other populations located in Minneapolis via existing surveillance methods (i.e., those used by the CDC Autism and Developmental Disabilities Monitoring (ADDM) Network).
Risk Factors Research
CDC is supporting research on risk factors that may be related to the development of ASD. CDC's CADDRE Network has been successful in implementing the Study to Explore Early Development (SEED), which is currently the largest collaborative scientific study in the United States examining various risk factors for autism. SEED was started in 2006 and seeks to characterize the autism behavioral phenotype and associated developmental, medical, and psychiatric conditions of autism and to understand the genetic and environmental risk factors for autism. SEED risk factor focus areas include genetics, maternal infections, maternal hormonal factors such as infertility conditions and treatments, family history of auto-immune and other immunological conditions, and obstetric risk factors. Other SEED focus areas include gastrointestinal symptoms and disorders in children with ASD and sociodemographic features of children with ASD and their families. By the end of 2010, SEED enrolled more than 3,000 children and their families, and initial findings are due to be released in 2014. These results hold promise for greatly advancing our understanding of ASD etiologies. The CADDRE Network initiated a second phase of SEED, called SEED 2, in 2011 (implemented in 2012). This expansion will allow for more detailed analyses of genetic and phenotypic ASD subtypes. Enrollment and data collection are ongoing. To date, over 1,200 children have enrolled in SEED 2.
Immunization Safety Office
CDC's Immunization Safety Office published a study in the Journal of Pediatrics in 2013 that evaluated the association between immunological-stimulating protein and polysaccharide contents in vaccines and development of autism and adverse neuropsychological outcomes.17 This study was the first of its kind to evaluate the CDC recommended childhood immunization schedule and autism spectrum disorder (ASD). This case-control study was conducted in three U.S. managed care organizations (MCOs) of 256 children with ASD and 752 matched controls to evaluate the number of vaccine antigens (substances, such as bacterial protein fragments, that stimulate an immune system response) were received in the first two years of life and whether or not the number of antigens correlated with the subsequent development of autism. Researchers examined two subcategories of ASD: autistic disorder (AD) and ASD with regression. The findings showed that the amount of antigens from vaccines received on one day of vaccination or in total during the first two years of life is not related to the development of ASD. This study provides relevant data for the current immunization schedule. It strengthens the conclusion of a 2004 comprehensive review by the Institute of Medicine (IOM) that there is not a causal relationship between certain vaccine type and autism.18
CDC, in partnership with the Department of Defense-Autism Research Program (DoD-ARP), conducted the Blood Spot Project to investigate the relationship between development of ASD and the presence of cross-reactive antibodies (antibodies that may have been produced to help the body eliminate infectious agents such as bacteria, but that also bind to human body proteins, also known as antigens) present in pregnant women and infants. The project aimed to investigate whether such cross-reactive antibodies interact strongly with brain tissue molecules in the fetus during pregnancy to subsequently lead to changes in fetal brain development.
Archived dried blood spot (DBS) samples (with consent for use in retrospective research studies) were analyzed to determine whether the developing fetus was exposed to antibodies that react with antigens of bacterial, neural, and endocrine association. The study evaluated archived DBS from newborn children who later developed autism and from others who developed normally and did not develop autism. The results did not reveal any antigen-specific antibody binding that was associated with an increased risk for autism. However, antibody binding to pneumococcal polysaccharide antigens (antibodies produced to respond to the presence of pneumococcus bacteria) was associated with a modest but statistically-significant decrease in risk for ASD, suggesting the potential that this antibody actually provides protective immunity. A manuscript describing these results is in preparation.
CDC is also involved in multiple early identification activities through the "Learn the Signs. Act Early." health education program. Program efforts are helping to change perceptions about the importance of identifying developmental concerns early so that children and their families receive the services and support they need. Since January 2010, more than 3.3 million LTSAE materials have been distributed, and another approximately 1 million items have been downloaded. The LTSAE webpages have received more than 7 million page views by health care professionals, parents, partners, campaign champions, and early child care providers.
"Learn the Signs. Act Early." starts with providing information to help all families with children under the age of five years monitor their child's development. This is important because many developmental delays do not have physical signs and the more parents are aware of what children typically should do at certain ages, the sooner they may be able to recognize when there is a concern. The program provides free tools and resources for families and professionals. For example:
- The Milestone Moments booklet (PDF - 1 MB) is a practical and appealing booklet for parents with milestone checklists, warning signs, and tips for parents. The Milestone Moments brochure (PDF - 2 MB) lists important milestones for parents of children ages 6 months to 4 years in a game board format. These materials are also available in Spanish.
- A children's book, Amazing Me: It's Busy Being 3!, teaches parents about developmental milestones and the importance of tracking them in their young children as they read the book to their toddler.
- The Autism Case Training (ACT): A Developmental Behavioral Pediatrics Curriculum is designed to educate future healthcare providers on fundamental components of identifying, diagnosing, and managing autism spectrum disorder through real life scenarios. The curriculum was developed through a collaborative effort between CDC and the HRSA/MCHB Developmental-Behavioral Pediatrics Fellowship Training Program and has also been endorsed by the American Academy of Pediatrics and the Society for Developmental and Behavioral Pediatrics. The online ACT training, which provides continuing medical education credits, has been approved by the American Board of Pediatrics to meet Maintenance of Certification requirements for pediatricians.
The "Learn the Signs. Act Early." program has also supported multiple evaluation and research projects to inform the content of the information on early developmental monitoring and acting early, and on the strategies used to get this information into the hands of those that need them – parents of young children, healthcare providers, and early care and education providers.
In addition to a range of information resources, "Learn the Signs. Act Early." has worked to establish partnerships to embed the monitoring of early child development into programs and systems that serve young children and their families, including public health programs and childcare centers. There has been a particular focus on reaching low resource families through partnerships with the U.S. Department of Agriculture (USDA) Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) and the Administration for Children and Families (ACF) Head Start programs.
Also as part of the Act Early Network Initiative, CDC has supported three cohorts of Act Early Ambassadors since 2011. These ambassadors identify at least two specific projects they can achieve to improve early identification and linkage to services in their state during their tenure. There are currently 25 Act Early Ambassadors who are state-level leaders from advocacy, early intervention, education, medical, and other systems working to increase collaboration and coordination among programs and services for children with autism and other developmental disabilities. This program has proven to be very effective in expanding the reach of LTSAE materials and in developing and supporting a cadre of professionals at the state level interested in early identification issues. Building on the momentum from the collaborative Act Early state team work, in 2010, CDC collaborated with the Association of Maternal and Child Health Programs to annually fund 10 small grants to states to implement one or two high-priority activities from their Act Early state plans.
CDC personnel have also been actively involved with other federal and non-federal agencies working to improve early identification and linkage to services for children with ASD and other developmental disabilities. For example, CDC and HRSA engage in Autism Coordination meetings and have worked together on initiatives such as the development of the Healthy People 2020 objectives for early screening and start of services for young children with autism and other developmental disabilities. CDC has worked closely with ACF on the HHS Developmental Screening Workgroup to develop tools to improve developmental screening within childcare settings. In addition, CDC has worked with Autism Speaks to provide input and coordination with their "Early Access to Care" initiative to improve early identification of autism.
The following is a description of specific CDC programs strengthened by the CAA/CARA:
- Metropolitan Atlanta Developmental Disabilities Surveillance Program (MADDSP): This project conducts ongoing and systematic monitoring of prevalence of selected developmental disabilities (intellectual disability, hearing loss, vision impairment, cerebral palsy, and autism spectrum disorder) according to various demographic characteristics of children who reside in metropolitan Atlanta. MADDSP serves as the model for the Autism and Developmental Disabilities Monitoring (ADDM) Network and participates as a site in this collaboration.
- Autism and Developmental Disabilities Monitoring (ADDM) Network: This is a collaborative project to characterize the population prevalence and characteristics of children with ASD and other developmental disabilities. Cooperative agreement grants to conduct ADDM Network activities have been awarded to State Health Departments or their representatives to develop and improve programs that track the number of children with ASD in their states. The ADDM Network currently conducts surveillance of ASD and other developmental disabilities in 12 geographic areas of the United States. ADDM surveillance has traditionally focused on 8-year-olds, but recently added a component looking at 4-year-olds in six ADDM sites (see Early ADDM below).
- Autism Spectrum Disorder Surveillance of Younger Children (Pilot Surveillance): In 2006, two ADDM sites (Florida and California) were funded to conduct a pilot project to assess the feasibility of monitoring the early signs of autism in children under the age of 4. FY 2010 was the final year for these pilot projects, but they showed that early ASD surveillance is feasible in helping us better understand the early identification of children with ASD and provided the support to add a new component to the ADDM Network monitoring ASD prevalence and characteristics among children who are 4 years of age (see Early ADDM below).
- Early ADDM Network: In fiscal year 2010, CDC provided supplemental funding to six ADDM sites to track the prevalence of ASD among younger children (4-year-olds) using ADDM methods. These efforts have expanded surveillance focusing on younger cohorts to better understand the population characteristics of young children affected by ASD and to increase awareness of ASD in young children, leading to improvements in early identification efforts. The Early ADDM Network will also allow for follow-up of the same cohorts of children when they are 8 years of age in the ongoing ADDM Network surveillance activities.
- Study to Explore Early Development (SEED): SEED is a multi-site, multi-year collaborative study funded by CDC. It is currently the largest study in the United States to help identify factors that may put children at risk for ASD and other developmental disabilities. The first phase of SEED includes more than 3,000 children who were enrolled when they were ages 3 through 5. This study includes diverse groups from six areas across the country. Additional children are currently being enrolled in the second phase of SEED, which was implemented in 2012.
- Denmark Collaboration: The CDC-Denmark Program was established to examine a variety of public health issues, including ASD and other developmental disabilities – drawing on the unique research resources in Denmark. Denmark has a combination of national public health data systems currently in place that are not found elsewhere in the U.S. or abroad. This unique combination includes more than 200 long established national disease and administrative registries and a complete bio-bank of archived newborn blood samples of all children born in Denmark from 1982 and onwards. Funding for this project ended in FY 2011.
- "Learn the Signs. Act Early.": This program aims to improve early identification of children with autism and other developmental disabilities so they can get the services they need. Many children with a developmental disability are not identified until after entering school; however, early intervention can have a significant impact on a child's ability to learn new skills. CDC's program promotes awareness of healthy developmental milestones in early childhood, promotes early identification of signs of delay, and works with state and national partners to enhance coordination of efforts at the state level to improve screening and referral to early intervention services.
- A complete listing of CDC funded publications is available in Appendix iii.
In addition to the activities described above, CDC participates as a member agency on the Interagency Autism Coordinating Committee.
CDC ASD-Related Expenditures
|CDC Autism Expenditures||FY 2010||FY 2011||FY 2012||FY 2010-FY 2012 Total|
|Autism Surveillance and Research||$21,337,650||$20,700,550||$20,585,784||$62,623,984|
|Autism Awareness ("Learn the Signs. Act Early.")||$3,372,400†||$3,241,675†||$2,762,228||$9,376,303|
Table 5. CDC ASD-related budget expenditures from FY 2010-FY 2012. These expenditures include costs associated with CDC's autism budget lines and infant health budget line in support of programs on autism and other developmental disabilities. Appropriations for these activities are a part of the annual appropriations provided to CDC and are not appropriated under the CAA/CARA.
†In FY 2010, CDC provided $420,000 to HRSA through an interagency agreement and in FY 2011 CDC transferred funds in the amount of $392,028 to HRSA as supplemental support of HRSA 08-144 grantees.
CDC Blood Spot Project Funding (FY 2010 – FY 2012)
|Project||FY 2010||FY 2011||FY 2012||FY 2010-FY 2012|
|Blood Spot Project||$125,000||$62,500||$62,500||$250,000|
Table 6. Funding for Blood Spot Project (Funding for this project is not included as part the CDC's of overall autism budget).
Centers for Medicare & Medicaid Services (CMS)
The Centers for Medicare & Medicaid Services (CMS)'s involvement in implementing the CAA of 2006 in FYs 2010-2013 is focused on Sections 399BB and 399CC, "Autism Education, Early Detection, and Intervention" and "Interagency Autism Coordinating Committee."
Regarding Section 399BB, "Autism Education, Early Detection, and Intervention," CMS has supported items (a)(1) and (6) and also item (c)(v). The former discusses awareness of ASD and evidence-based interventions for people with ASD or other developmental disabilities while the latter specifically references "programs under title XIX of the Social Security Act, particularly the Medicaid Early and Periodic Screening, Diagnostic and Treatment (EPSDT) benefit.
In 2010, CMS issued a report entitled Autism Spectrum Disorders (ASDs) Services Final Report on Environmental Scan (PDF - 2.44 MB) describing the results of an extensive literature review conducted of the scientific evidence regarding the efficacy, effectiveness, safety, and availability of ASD-related Medicaid-funded services and supports, including those funded through federal sources, that support daily living for people of all ages with ASD. The report includes service categories and descriptions, evidence-based services for children, emerging interventions, unestablished interventions, and the same categories for transitioning youth and adults. It also includes an intervention-specific analysis and addresses the economic impact of ASD. The scan highlighted the lack of research into effective services for adults, and interventions that can be implemented successfully in the community. CMS expended approximately $191,000 related to activities to complete the Environmental Scan.
In 2011, CMS issued a report on a nine-state study entitled, Report on State Services to Individuals with Autism Spectrum Disorders (ASD) (PDF - 884 KB), which assessed the implementation of evidence-based/promising practices through the lens of state experience, summarizing the current state of ASD-related services covered by Medicaid and other sources in Arizona, California, Connecticut, Indiana, Maine, Missouri, New Mexico, Pennsylvania, and Wisconsin. The report describes the types of services and supports provided by state and local governments, the sources of funding for programs, and the policy, staffing and implementation issues that states and localities encounter in the administration of programs that serve people with ASD. Approximately $198,000 was expended on activities related to the Nine-state study.
In 2014, CMS issued a report, "Autism Spectrum Disorders (ASD): State of the States of Services and Supports for People with ASD," describing the results of the "State of the States" project. This study assessed existing state programs and supports for families living with ASD in 50 states and the District of Columbia, providing a comprehensive view of services that received support from various federal sources and were made available through state programs across the country. This project is named as an objective in Chapter 7 of the 2011 IACC Strategic Plan and approximately $350,000 has been spent to support this project and related activities.
CMS administers the Medicaid program, Title XIX of the Act, which includes Early and Periodic Screening, Diagnostic and Treatment (EPSDT). The EPSDT benefit entitles children enrolled in Medicaid under age 21 to a comprehensive package of preventive health care and medically-necessary services. EPSDT includes screening, vision, dental, and hearing services as well as "[s]uch other necessary health care, diagnostic services, treatment, and other measures described in section 1905(a) [of the Act] to correct or ameliorate defects and physical and mental illnesses and conditions discovered by the screening services, whether or not such services are covered under the [Medicaid] state plan." The EPSDT benefit includes all mandatory and optional services in Section 1905(a) of the Act such as physical therapy, occupational therapy, speech therapy, and rehabilitative services.
Through Medicaid programs, many states currently offer coverage for services for ASDs through waivers, primarily through Home and Community-Based Services (HCBS) waivers. For these waivers, states develop and operate HCBS programs based on state needs, priorities and legislative direction. All 50 states and the District of Columbia have HCBS or 1115 Research and Demonstration Project waivers for individuals with intellectual or developmental disabilities and many states serve people with ASD under their primary HCBS waiver. More specifically, more than 30 states have explicitly listed autism as a related condition or explicitly included autism in the definition of people served under the state's HCBS waiver for people with intellectual disabilities. Also, states offer ASD waivers for children and some specifically for adults (ages 18+ or 21+). In addition, states are beginning to use the 1915(i) HCBS state plan authority to offer services to individuals with ASD. Furthermore, individuals who meet the supplemental security income (SSI) federal definition of disability may qualify for Medicaid services under a HCBS waiver in their state for individuals with disabilities or under section 1902 of the Social Security Act that may include individuals with autism.
CMS is preparing to implement provisions under the Affordable Care Act in 2014 that will benefit individuals with autism and related conditions. In particular, the Health Insurance Marketplace will expand access to affordable insurance options for individuals on the autism spectrum and families of children on the autism spectrum. In addition, rehabilitative and habilitative services devices, as well as mental health and substance abuse disorder services, including behavioral health treatment, will be covered as essential health benefits required for non-grandfathered health plans, which will include insurance options under the Marketplace.
In addition to the activities described above, CMS participates as a member agency on the Interagency Autism Coordinating Committee.
CMS ASD-Related Expenditures (FY 2010 – FY 2012)
|CMS ASD-related Activities||FY 2010||FY 2011||FY 2012||FY 2010-FY 2012|
|State of the states in services and supports for persons with ASD (2009-2013)||$92,026||$88,154||$0||$180,180|
|Report on state services to individuals with ASD - Nine state study (2008-2011)||$198,348||$0||$0 (Completed)||$198,348|
|Meeting the needs of individuals with ASD through comprehensive services- Environmental Scan (2008-2011)||$40,540||$0||$0 (Completed)||$40,540|
Table 7. CMS ASD-Related Expenditures from FY 2010-FY 2012.
Food and Drug Administration (FDA)
The Food and Drug Administration (FDA)'s mission is to protect and advance public health by ensuring food safety and by helping to speed innovations that provide the nation with safe and effective medical products. The Agency achieves this by applying the latest technology and science-based standards to the regulatory challenges presented by drugs, biologics (i.e., vaccines, blood products, cell and gene therapy products, and tissues), medical devices, food additives, and, since 2009, tobacco. The FDA reviews protocols for clinical trials to assess study design and to ensure the protection of human subjects. FDA also reviews new drug applications to ensure that new drugs are safe and effective. Many clinical studies include individuals with ASD. Drugs used to ameliorate various symptoms of autism including anxiety, depression, aggression, and seizures are a few of the many pharmacologic treatments that are subject to rigorous regulatory review by the FDA.
FDA has a representative on the Interagency Autism Coordinating Committee who provides insight into drug development and regulation. In addition, medical officers from the Division of Psychiatry Products have participated in conferences relevant to clinical trials and drug development for autism treatment. Examples include the Autism Speaks Outcomes Meeting, which focused on clinical assessments for measuring outcomes in clinical trials in the areas of Social Communication and Repetitive Behaviors and Anxiety, and the Foundation for the National Institutes of Health Biomarkers Consortium Autism Initiative Meeting.
Health Resources and Services Administration (HRSA)
Under the Combating Autism Act of 2006 (CAA) and the Combating Autism Reauthorization Act of 2011 (CARA), the Health Resources and Services Administration's (HRSA) Maternal and Child Health Bureau (MCHB) received funding to:
- Increase awareness of autism spectrum disorder (ASD) and other developmental disabilities (DD)
- Reduce barriers to screening and diagnosis
- Support research on evidence-based interventions
- Promote the development of guidelines for evidence-based practices
- Train health care professionals to provide screening, diagnostic and early, evidence-based intervention services for children with a confirmed diagnosis.
To meet these five objectives, MCHB developed and implemented the Combating Autism Act Initiative (CAAI). The CAAI provides grants for training, research, and the development of comprehensive, coordinated state systems of care for ASD and other DD. Four separate but complementary program areas have received CAAI grants:
- Leadership Education in Neurodevelopmental Disabilities (LEND) training programs
- Developmental Behavioral Pediatric (DBP) training programs
- Autism Intervention Research Programs (Autism Intervention Research Network on Behavioral Health (AIR-B Network), Autism Intervention Research Network on Physical Health (AIR-P Network), Developmental Behavioral Pediatrics Research Network (DBPNet), R40 Autism Intervention Research and Secondary Data Analysis Studies)
- State Implementation and State Planning Grants Program
In addition to these grants, MCHB also funded two national resource centers to provide technical assistance to grantees and to promote collaboration within and across the grant programs. The National Combating Autism Interdisciplinary Training Resource Center supports the LEND and DBP grantees by providing technical assistance, disseminating information and resources, and providing program coordination. The State Public Health Autism Resource Center (SPHARC) provides technical assistance to the State Implementation and State Planning Grants to improve systems of care and support the role of State Public Health Agencies in fostering early identification, diagnosis, and intervention of ASD and other developmental disabilities (DD).
To maximize the return on these federal investments, HRSA developed a strategic interdisciplinary approach aimed at ensuring the Initiative's effectiveness and efficiency. The MCHB autism research programs have created three Networks and a cadre of researchers that continue to develop and disseminate evidence about the effectiveness of specific treatments and interventions for ASD and other developmental disabilities. That research informs the work of the training programs and the state grants. Coordination and collaboration across programs and agencies—a key performance indicator for these grants—eliminate redundancies and create synergies that can spur broad improvements in the system of services for ASD and other DD. Finally, by generating new evidence, training professionals in evidence-based practices, and promoting the development of comprehensive, coordinated delivery systems, the CAAI investments are improving access to early and appropriate screening, diagnostic, and intervention services, which should lead to better outcomes for individuals on the autism spectrum for years to come. The sections that follow document specific examples of progress to date.
HRSA's Leadership Education in Neurodevelopmental and Related Disabilities (LEND) grants provide interdisciplinary training to enhance the clinical expertise and leadership skills of professionals dedicated to caring for children with neurodevelopmental and other related disabilities and special health care needs. The Leadership Education in Developmental-Behavioral Pediatrics Program (DBP) provides training for the next generation of leaders in developmental-behavioral pediatrics and to provide pediatric practitioners, residents, and medical students with essential biopsychosocial knowledge and clinical expertise. The 43 LEND and 10 DBP training programs with CAAI funding continued to address the shortage of trained professionals who can provide screening and diagnostic services for ASD and other DD. These programs span 39 states, and their reach extends beyond those states as a result of partnerships formed and services provided across state lines. These programs have focused on:
- Training health professionals to use valid, reliable screening and diagnostic tools and to provide evidence-based interventions for children with ASD or other DD
- Providing continuing education to practicing health care providers
- Providing technical assistance to MCHB Title V agencies, community-based organizations, and other entities that serve children with ASD and other DD and their families
Each year, the LEND and DBP programs enroll long-term fellows that receive at least 300 hours of intensive didactic training and clinical experience working as part of a developmental screening or diagnostic team in hospitals, clinics, and community-based settings. In addition, both programs provide "medium-term" training to medical residents who participate in 40–299 hours of training. Finally, both programs also reach a large number of "short-term trainees" every year who receive up to 40 hours of training (Table 8). Table 9 shows the number of training events delivered per year between 2009 and 2010.
With every subsequent year of funding, the LEND and DBP programs continued to expand their training capacity, as evidenced by the increase in the number of short-, medium- and long-term trainees reached each year since 2010. Collectively, the LEND and DBP programs reached more than 10,500 short-term and more than 3,000 medium-term trainees in 2012. Many of the medium-term trainees are medical residents and practicing professionals who provide direct services to children and families. By preparing these professionals to implement recommended screening practices and to use evidence-based screening tools such as the Modified Checklist for Autism in Toddlers (M-CHAT), the training programs are improving early identification of ASD and other DD.
HRSA Number of Trainees by Fiscal Year and Grant Program
|Number of Trainees by Grant Program||2010||2010||2010||2011||2011||2011||2012||2012||2012|
Table 8. The data for 2010 and 2011 include 39 Leadership Education in Neurodevelopmental and Other Related Disabilities (LEND) programs and 6 Developmental-Behavioral Pediatrics (DBP) programs that had Combating Autism Act Initiative grants at that time. With the reauthorization, 43 LEND and 10 DBP programs received CAAI funding. The data for 2012 comes from these 43 LEND and 10 DBP programs.
*Includes brown bags, grand rounds, workshops, seminars, or presentations. Does not include CE events.
The enrollment of long-term trainees in the LEND and DBP programs has also increased every year since 2010, from 1,391 in 2010 to 1,474 in 2012. The impact of this increase is likely to have far-reaching effects since these long-term trainees typically take on leadership positions in the field, which enable them to direct the training of future physicians and to establish new programs for ASD and other DD.
Data collected from the LEND programs over the past 4 years show the direct impact of these investments on families with a child who screens positive for ASD. In 2010, LEND programs provided interdisciplinary diagnostic evaluations for more than 35,000 infants and children. With the expanded number of LEND grantees and trainees, the LEND programs provided interdisciplinary diagnostic evaluations for close to 56,000 infants and children in 2012. By continuing to meet the growing demand for these services, the LEND programs are reducing wait times for diagnostic evaluation and entry into intervention services. Moreover, because the LEND programs typically target underserved populations, their efforts are also helping to address disparities in early identification of ASD.
HRSA ASD-Related Training Events (FY 2010 – FY 2012)
|Number of university courses addressing screening tools, diagnostic tools, and/or evidence-based interventions||369||10||379||432||8||440||490||12||502|
|Number of participants reached via university courses addressing screening tools, diagnostic tools, and/or evidence-based interventions||8,415||582||8,997||11,079||508||11,587||12,408||594||13,002|
|Number of university courses addressing advocacy, counseling, and coordination of care||250||6||256||350||7||357||505||7||512|
|Number of participants reached via university courses addressing advocacy, counseling, and coordination of care||4,757||137||4,894||7,937||113||8,050||10,266||148||10,414|
|Continuing Education Events|
|Number of continuing education events addressing screening tools, diagnostic tools, and/or evidence-based interventions||721||60||781||805||69||874||806||108||914|
|Number of participants reached via continuing education events addressing screening tools, diagnostic tools, and/or evidence-based interventions||89,092||3,160||92,252||49,989||5,331||55,320||56,958||9,460||66,418|
|Other Training Events|
|Number of other training events addressing screening tools, diagnostic tools, and/or evidence-based interventions||1,665||82||1,747||2,108||146||2,254||1,927||201||2,128|
|Number of participants reached via other training events addressing screening tools, diagnostic tools, and/or evidence-based interventions||51,443||2,398||53,841||51,897||2,691||54,588||63,378||4,708||64,086|
Table 9. Number of Training Events and Participants Reached by Fiscal Year and Grant Program. "Other training events" include trainees who participated in practical/fieldwork that addressed early signs of ASD and other developmental disabilities (DD), screening, diagnosis, and/or evidence-based interventions for ASD and other DD.
HRSA's research programs support national research networks and field-initiated research projects on evidence-based interventions to improve the health and well-being of children and adolescents with autism spectrum disorders and other developmental disabilities. These programs address the needs of underserved populations, such as low-income, racial/ethnic minorities, immigrants, individuals who have limited access to services, and other underserved populations. The Autism Intervention Research Network on Physical Health (AIR-P Network) is a multi-site research network that works to strengthen the evidence base for interventions through research, development of clinical practice guidelines, and the dissemination and transfer of network findings on interventions, guidelines, tools and systems management approaches broadly into practice settings and improved care. MCHB's research programs have made strides in:
- Advancing research on ASD interventions
- Developing evidence-based guidelines to support practitioners and families in providing appropriate care for children with ASD and other DD
- Validating intervention tools
Since 2010, the Autism Intervention Research Network on Physical Health (AIR-P) has completed five studies; published empirically based physician guidelines for the management of gastrointestinal (GI) issues, sleep, and attention deficit hyperactivity disorder (ADHD); and developed 10 tool kits for parents and providers. In addition, this Network currently supports six current/active studies that address an array of medical and related issues associated with ASD, such as obesity induced by antipsychotic medication use, treatment of sleep disorders, gastrointestinal symptoms, and toilet training. See Tables 19, 20, and 23 for a complete listing of AIR-P research studies and products.
The Autism Intervention Research Network on Behavioral Health (AIR-B) is a multi-site research network that works to advance behavioral health for children and adolescents with autism spectrum disorders (ASD). The intervention research conducted by the AIR-B Network is delivered in home and community settings and focuses on underserved and underrepresented groups of children and families. The AIR-B network has forged strong partnerships with community providers to implement evidence-based interventions effectively and sustainably in real-world settings.
The AIR-B Network has completed guidelines for the implementation of psychosocial and related interventions for children with ASD and their families; these guidelines were published in a Pediatrics journal supplement in 2012. In addition, the AIR-B has completed four studies and has four studies in progress. The AIR-B has developed three tools, Playground Observation of Peer Engagement (and Teen Observation of Peer Interaction), Social Networks Survey, and Active Engagement Rating Scale; it is validating two additional tools, ADOS-Change and the Pragmatic Rating Scale. In all AIR-B initiatives, the focus continues to be on underserved, underrepresented, and under-resourced contexts and families of children with autism. The AIR-B has forged strong partnerships with school districts, which is critical in the success of conducting community participatory research with key stakeholders including teachers, paraprofessionals, parents, and administrators. Tables 21-22 list AIR-B research studies and products.
The Developmental Behavioral Pediatrics Research Network (DBPNet) is a multi-site research network that promotes and coordinates research activities in behavioral, psychosocial, and developmental aspects of pediatric care to improve clinical services and health outcomes for, but not limited to, children with autism spectrum disorder (ASD) and other developmental disabilities. The DBPNet also provides the mentoring environment in which to train a new generation of developmental behavioral pediatric researchers.
The DBPNet, initially funded in 2010, has developed consensus research priorities for the field of developmental-behavioral pediatrics and completed a study that assessed research training methods and outcomes at accredited DBP fellowship training programs. One study has been completed and six studies are currently in progress. These studies are listed in Table 10. The DBPNet also launched its Network Web site in 2011, which provides information on the member site's current research activities and will serve as a repository for Network resources.
HRSA Developmental Behavioral Pediatrics Research Network (DPBPNet) Research Studies
|Year Initiated||Study Title||Brief Description|
|2010||What are Important Research Questions in Developmental-Behavioral Pediatrics: The DBPNet Perspective||The primary goal of this study is to identify the most important research questions in developmental-behavioral pediatrics that should be pursued in the next 5 years. A secondary objective is to identify the important research questions that are most feasible for a developmental-behavioral pediatrics research network.|
|2011||A Survey of Research Training in DBPNet Fellowship Programs||This study is a descriptive survey, aimed at characterizing the content and methodologies used for research training in DBP Fellowship Programs. This study provides information on the qualities of programs which promote strong fellowship, scholarly activity, and productivity.|
|2012||Nature of Referrals to Outpatient Services at DBPNet sites||This is a prospective descriptive study of the clinical practices of DB pediatricians at DBPNet sites. The study will: describe the referral population, the reason for referral, the assessment, initial diagnoses, and recommendations for children referred for DBP consultation; quantify the variability of time and resources devoted to initial DBP consultation by referral question and patient characteristics; and describe diagnoses given to children referred for evaluation of ADHD or ASD, but not found to have these conditions.|
|2012||Practice Variation in the Assessment and Management of Attention Deficit Hyperactivity Disorder and Autism Spectrum Disorders by Developmental Pediatricians: A DBPNet Study||This is a prospective descriptive study of the clinical practices of DB pediatricians at DBPNet sites to describe practices and identify variations in the practices of DB pediatricians related to the assessment and management of ADHD and ASD.|
|2012||Extracting Electronic Health Record Data on Use of Psychotropic Medications in DBPNet: Costs, Feasibility, and Practice Variation||This is a retrospective descriptive study to: collect already existing data from EHRs at multiple sites within DBPNet to determine the feasibility and costs of collecting and sharing deidentified data, describe the diagnoses seen in DBP practice and the use and laboratory monitoring of psychotropic medications by site, clinician and child characteristics.|
|2013||Maternal Immune Status and Autism Severity||This study proposes to replicate the presence of maternal autoantibodies in mothers of children with ASD in a geographically diverse population utilizing the DBPNet and determine the association of these antibodies with autism severity and behavioral impairments.|
|2013||Family Navigation to Reduce Disparities in Timely Autism Diagnosis and Access to Early Intervention||This project will assess the feasibility of patient navigation, a care management approach designed to target patients from underserved populations who have been identified as at-risk for a specific condition and are likely to face a variety of barriers to diagnosis and quality care, to support early diagnosis and receipt of recommended services among young children at-risk for autism from low-income minority families.|
Table 10. Developmental Behavioral Pediatrics Research Network (DBPNet) Research Studies.
The R40 MCH Autism Intervention Research Program supports applied research and secondary data analysis studies (SDAS) on evidence-based practices for interventions to improve the health and well-being of children and adolescents with autism spectrum disorders (ASD) and other developmental disabilities. The 17 currently funded R40 research projects are addressing several high-priority topics pertaining to ASD. Three studies specifically address issues surrounding the transition to adulthood. Other studies are assessing the effectiveness of various interventions and practices intended to improve outcomes for children with ASD and to support their families. Several R40 studies also focus on minority and underserved populations. Table 11 lists completed and active studies.
A total of six 1-year secondary data analysis studies (SDAS) were completed in 2011. These studies addressed disparities in access to care and quality of care, health care utilization and financing for children with autism and their families, and transition services for young adults reaching the age of majority.
The Developmental Behavioral Pediatrics Research Network (DBPNet), initially funded in 2010, has developed consensus research priorities for the field of developmental-behavioral pediatrics and completed a study that assessed research training methods and outcomes at accredited DBP fellowship training programs. One study has been completed and six studies are currently in progress. These studies are listed in Table 12. The DBPNet also launched its Network Web site in 2011, which provides information on the member site's current research activities and will serve as a repository for Network resources.
The 17 currently funded R40 research projects are addressing several high-priority topics pertaining to ASD. Three studies specifically address issues surrounding the transition to adulthood. Other studies are assessing the effectiveness of various interventions and practices intended to improve outcomes for children with ASD and to support their families. Several R40 studies also focus on minority and underserved populations. Table 13 lists completed and active studies.
A total of six 1-year secondary data analysis studies (SDAS) were completed in 2011. These studies addressed disparities in access to care and quality of care, health care utilization and financing for children with autism and their families, and transition services for young adults reaching the age of majority.
HRSA R-40 Research Grants
|Year Initiated||Grant Type||Study Title||Brief Description|
|2009||Multiyear||Supporting the Well-Being of Families of Young Children With Autism Spectrum Disorders||The objective of this project is to determine whether an evidenced-based empowerment strategy, Problem Solving Education (PSE), targeted to mothers of young children with ASD, promotes family well-being by decreasing the burden of maternal depressive symptoms and parenting stress and improving maternal social functioning.|
|2009||Multiyear||Parent-Mediated vs. Center-Based Intervention for Toddlers With ASD: A Randomized Control Trial||This study evaluates whether a parent-mediated intervention and center-based intervention provided by a clinician yield comparable outcomes for minority and underserved toddlers with ASD. Results of this study will impact Part C intervention paradigms, and initiate a series of studies aimed at determining active ingredients of early intervention, moderators, and mediators of treatment response, and how best to translate evidence-based findings into community practice involving young minority and underserved children with ASD.|
|2009||Multiyear||Family-Centered Transition Planning for Students With Autism Spectrum Disorders||This study demonstrates a Family-Centered Transition Planning model designed to empower families and high school students with autism spectrum disorder transitioning to adult life. The model has 3 components, designed to empower families and transitioning students to take a leading role in the process of transition planning.|
|2009||Multiyear||Telehealth Delivery of a Family-Focused Intervention to Reduce Anxiety in Youth With Autism Spectrum Disorders in Rural Colorado||This study develops and evaluates the use of interactive televideo technology to deliver a promising mental health intervention to families of children with ASD who are geographically removed from specialty medical centers.|
|2009||Multiyear||Assessing a participant directed service system for low income children with ASD||This study evaluates a Medicaid supportive services waiver program in Massachusetts that uses a participant direction (PD) model to choose and manage services for young children with ASD and their families.|
|2009||SDAS||The Effectiveness of Special Education Services for Children With Autism: A National Longitudinal Study||This study assesses the effectiveness of special education services for children with ASD by measuring the effect of high quality treatment on outcomes. Outcomes considered include key measures of academic, social, behavioral, functional, and motor skills.|
|2009||SDAS||Services and Outcomes for Transition Age Young Adults with Autism Spectrum Disorders: Secondary Analysis of the NLTS2 and RSA 911||This study conducted descriptive and predictive analyses of the factors associated with and influencing a successful transition into adulthood for young adults with ASD using secondary data sources.|
|2010||SDAS||Autism Insurance Policy and Access to Care for Children With Autism: A State-Level Analysis||This study seeks to determine to what extent state insurance policies on autism are associated with better access for children with autism. The investigators had 3 aims: 1) assess whether access to care for children with autism varies across states, 2) assess the extent that state characteristics, such as insurance policy on autism, enhance access to care for children with autism, and 3) identify the states that have achieved the best access to care for children with autism for future study.|
|2010||SDAS||Medical Service Utilization by Medicaid-Eligible Children With Autism in Georgia: An Analysis of One Year of Claims and Provider Data||This study examines the service utilization patterns of children diagnosed with autism living in urban and rural areas of Georgia using Medicaid fee-for-service data from calendar year 2005. This is one of the first studies to use a large administrative dataset to study rural and urban differences in the utilization of health services in a publicly-insured population of children in the United States.|
|2010||Multiyear||Transition to Adult Health Care for Youth With Autism Spectrum Disorders||This study sought to understand barriers to transition for youth with ASD and to uncover current best practices. This information was used to design and test the feasibility of intervention strategies for improving the health care transition.|
|2010||Multiyear||Predictors of Effects of Propranolol on Language & Connectivity in Autism||The aim of this study was to examine how markers of sympathetic reactivity predict response to propranolol in autism. Unlike other agents under exploration for treatment of core features of autism, propranolol is available in a generic form and is inexpensive, increasing its availability for underserved patients.|
|2010||SDAS||Racial and Ethnic Disparities in Family Burden and the Access, Service Utilization, and Quality of Health Care for Children With Autism||This study has 4 aims: 1) To identify the extent and correlates of racial and ethnic disparities in health care access, health care quality, and health service utilization of Black and Hispanic children with autism and other developmental disabilities; (2) To examine differences in the health care access, health care quality, and health service utilization of Hispanic children with autism and other developmental disabilities by 1 dimension of acculturation and parental primary language.|
|2010||Multiyear||Use of a Family Navigator in Families with Children Newly Diagnosed with Autism Spectrum Disorder||The objective of this study is to determine whether an evidenced-based strategy, Patient Navigation, for families of young children newly diagnosed with ASD, improves the services the children receive, decreases the burden of parenting stress, and improves family functioning.|
|2010||Multiyear||Improved Identification of Autism Among Latino Children||The overall goal of the present project, a collaboration of researchers, primary care providers, and families, is to provide evidence for the effectiveness of a "Supported Screening" model to enhance identification and successful referral for Latino children.|
|2010||Multiyear||A Parent-to-Parent Model of Service Coordination for Families of Preschool Age Children with ASD||The purpose of this study is to investigate the effects of a culturally compatible parent-to-parent model of service coordination on the outcomes of preschool ages children just diagnosed with ASDs and their families.|
|2010||Multiyear||Parent-Implemented Training for Autism Through Teleconsultation (PITA-T)||The purpose of this study was to conduct innovative research on an evidence-based intervention that improves the health and well-being of children with ASDs.|
|2010||Multiyear||Evaluating the Impact of Early Intervention Services on Young Children with Autism: A State Systems Approach||The aim of the proposed study is to model a cost-effective approach to evaluating the impact of participation in early intervention systems on children with ASDs and their families that can be used in New York, other states, and nationally for program evaluation and quality improvement purposes.|
|2011||Multiyear||Controlled Trial of Sertraline in Young Children with Fragile X Syndrome||This project is a controlled trial of sertraline, a selective serotonin reuptake inhibitor (SSRI), for the treatment of children with fragile X syndrome (FXS) who are between 24 and 68 months of age.|
|2011||SDAS||Autism Intervention Challenges for Low-Income Children||This study addresses the important gaps in our knowledge about the challenges that disadvantaged or underserved children with ASD face accessing early intervention services and participating fully in intervention programs.|
|2011||Multiyear||Comprehensive Support for Families With Autism: A Parent-Based Mentoring Approach||This study is aimed at developing a novel intervention to improve quality of life for families who have children newly diagnosed with autism. The intervention uses a comprehensive strategy to determine individual challenges and develop coping strategies, train families in systems of care, and provide emotional support.|
|2011||Multiyear||Behavioral Treatment Through In-Home Telehealth for Young Children with Autism||The goals of this study are 1) to evaluate the effectiveness and efficiency of delivering an empirically validated behavioral treatment for challenging behavior in young children with ASD by using an in-home telehealth to reach underserved areas of a rural state, and 2) to evaluate the relation of family variables to treatment outcomes and acceptability of treatment procedures.|
|2011||Multiyear||Studying the Impact of Service-Learning on Career Development, Self-determination, and Social Skill Building for Youth with Autism Spectrum Disorders||This study will use a pre-test/post-test control group design to investigate the impact of the intervention using field-tested, standardized scales pertaining to 3 variables: career development, self-determination, and social skills.|
|2011||SDAS||Transition-Age Young Adults With Autism: The Role of Self-Determination, Social Skills, Job Search, Transportation, and Rehabilitation Services in Employment Outcomes||The objective of this project is to support the design of effective transition services and supports for students with autism by identifying personal and programmatic factors that are related to positive employment outcomes. The specific goals of this research project include documenting the roles of 4 domains—self-determination, social skills, job search strategies, and transportation—in promoting the transition of youth with autism into employment following high school.|
|2011||SDAS||Access, Quality, and Financial Implications of the Transitions of Children With Autism||This study builds on earlier research that identifies state‐level Medicaid and private insurance strategies to improve access and reduce financial burden. The proposed study will determine when families are most at risk of problems accessing care for their children and most at risk of incurring financial burden, to best target effective policy strategies.|
|2011||Multiyear||Efficacy of the Home TEACCHing Program for Toddlers With Autism||This study examined the efficacy of this home-based, manualized intervention program for toddlers with autism in a randomized controlled study comparing the HTP to a services-as-usual (SAU) control condition.|
|2012||Multiyear||Predicting Obstructive Sleep Apnea in Down Syndrome||The overarching goal of this study was to develop a tool that is comfortable, practical, and effective for diagnosing OSA in individuals with Down syndrome.|
|2012||Multiyear||Efficacy of a Qigong Massage Methodology for Children With ASD Ages 3-11 Years||This study replicated and expanded on previous work by conducting a larger, Phase-2 trial of the efficacy of the QST intervention in the younger than age 6 group and an exploratory trial in the 6- to 11-year-old group (45 children).|
Table 11. R-40 Research Grants by Year.
HRSA MCHB's Combating Autism Act Initiative (CAAI) Funding (FY 2010 – FY 2012)
|Programs||FY 2010||FY 2011||FY 2012||FY 2010-FY 2012|
|Leadership Education in Neurodevelopmental Disabilities (LEND) training programs||$27,423,411||$28,740,816||$28,128,964||$84,293,191|
|Developmental Behavioral Pediatrics (DBP) training programs||$1,904,628||$1,901,217||$1,857,203||$5,663,048|
|MCH Autism Intervention Research Networks (Physical Health, Behavioral Health and Developmental Behavioral Pediatrics)||$4,013,405||$7,602,509||$6,096,710||$17,712,624|
|MCH Autism Intervention Research Program||$4,103,084||$3,761,878||$3,938,931||$11,803,893|
|State Implementation Programs†|
|State Implementation Grants and State Planning Grants||$4,485,824||$3,107,487||$2,997,671||$10,590,982|
Table 12. Maternal and Child Health Bureau (MCHB)'s Combating Autism Act Initiative (CAAI) Funding.
*In addition to these grants, HRSA/MCHB awarded $571,915 in FY 2010, $637,641 in FY 2011, and $666,201 in FY 2012 to support a National Combating Autism Interdisciplinary Training Resource Center to coordinate the training program grantees, provide technical assistance to the training programs, and to ensure coordination between CAAI projects. In addition to these grants, HRSA/MCHB awarded $275,000 per year in FY 2010, 2011, and 2012 to support a state Public Health Coordinating Center to coordinate with the state implementation grantees to develop and implement a strategy for defining, supporting, and monitoring the role of state public health agencies in assuring that children and youth with ASD and other DD receive early and appropriate identification, diagnosis, and intervention.
† In FY 2010 and FY 2011, CDC made interagency transfers to HRSA in the amounts of $420,000 and $430,800, respectively. The total in the table for FY 2010 includes $399,000 in transfer funds from CDC for implementation of "Learn the Signs. Act Early." This includes supplements to four states (AK, WA, UT, MO) for $99,750 each. The total in the table for FY 2011 includes $392,028 in transfer funds from CDC for implementation of "Learn the Signs. Act Early." This includes supplements to four states (AK, WA, UT, and MO) for $98,007 each. This table reflects grant totals only; additional costs associated with operating the program include a PHS evaluation tap as required by the appropriation, salaries, rent, travel, and other costs.
State Implementation and Planning Grants
The State Implementation Grants implement existing state plans to improve access to health care and related services for children and youth with Autism Spectrum Disorder (ASD) and other developmental disabilities (DD). The State Implementation Planning Grants develop state plans to improve the system of services for children and youth with special health care needs who have ASD and other developmental disabilities. Eighteen State Implementation Grantees (SIGs) and four State Planning Grants (SPGs) worked at the local, regional, and state levels to improve access to coordinated, comprehensive, timely, and evidence-based screening, diagnostic, and intervention services for ASD and other DD. By taking a public health approach that includes identifying available resources and gaps in services, building awareness among professionals and the public of the need for early identification and intervention for ASD, and building a more integrated system of services for ASD, the SIGs and SPGs have achieved significant gains that will continue to spur improvements past their grant periods. States implemented different approaches in their efforts to improve services. Strategies included: partnering with existing programs, such as the U.S. Department of Agriculture (USDA) Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) to promote regular developmental screenings for this underserved population; training primary care practices on medical home concepts and how to develop care coordination plans for children with special health care needs; and piloting quality improvement learning collaboratives to increase early screening and reduce wait times for diagnostic services.
Although SIGs do not generally provide direct services, many states have seen measurable improvements in access to and coordination of services following their efforts to improve systems of care for individuals with ASD and other DD. Specific improvements reported by SIGs include the following:
- Improved access to timely ASD screening for underserved populations (Alaska, Maine)
- Increased universal screening practices (Utah, Hawaii)
- Decreased time between screening and diagnosis (Utah, Maine)
- Measurable improvements in the provisions of comprehensive, coordinated, community-based care (Vermont, Nevada, Rhode Island)
In addition to the activities described above, HRSA participates as a member agency on the Interagency Autism Coordinating Committee.
National Institutes of Health (NIH)
In accordance with mandates outlined by the Combating Autism Act of 2006 (CAA), P.L. 109-416 (PDF - 142 KB) and the Combating Autism Reauthorization Act of 2011 (CARA), P.L. 112-32 (PDF - 121 KB), the National Institutes of Health (NIH) has developed and promoted research initiatives designed to address the needs of children and families affected by Autism Spectrum Disorder (ASD). Under its general Public Health Service Act authorities, NIH follows the mandates of the CAA through the award of competitive grants and contracts, as well as through its support for the intramural research program. Funding for autism activities at NIH are provided through NIH's annual appropriations, and in 2009 and 2010, NIH supported some autism related activities through funds provided by the American Recovery and Reinvestment Act (P.L. 111–5, PDF - 1 MB).
NIH Intra-Agency Coordination
In 1997, at the request of Congress, the NIH formed an internal Trans-NIH Autism Coordinating Committee (NIH/ACC) to enhance the quality, pace, and coordination of autism research efforts at the NIH. Since then, the NIH ACC has been instrumental in planning trans-NIH research initiatives to advance the understanding of autism. Currently, staff from seven NIH Institutes and Centers (ICs) serve on the committee. The NIH ICs represented include the National Center for Complementary and Alternative Medicine (NCCAM), Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), National Institute on Deafness and Other Communication Disorders (NIDCD), National Institute of Environmental Health Sciences (NIEHS), National Institute of Mental Health (NIMH) and National Institute of Neurological Disorders and Stroke (NINDS). The National Institute of Allergy and Infectious Diseases (NIAID) participates but is not a member of the committee. The National Institute on Drug Abuse (NIDA) is not a member of the committee, but future efforts of the institute include issues related to comorbidity, marijuana use, and prescription drug use for autism youths (particularly as they reach adolescence). In addition to program staff from each of these ICs, the NIMH Office of Autism Research Coordination (OARC) and the NIMH National Database for Autism Research (NDAR) Office, participate in NIH ACC meetings, keeping NIH program offices abreast of their activities and coordinating on projects of mutual interest. The NIH ACC continually monitors the NIH autism research portfolio and the agency's progress toward meeting the goals of the Interagency Autism Coordinating Committee (IACC) Strategic Plan for ASD Research.
NIH-supported research has improved the ability to screen and diagnose ASD earlier in life; advanced our understanding of the potential causes of autism; and informed innovative treatments, interventions, and services for individuals with ASD.
Early detection means the possibility of early intervention
Although clinicians usually consider 18 to 24 months to be the earliest time to make a diagnosis of ASD, electroencephalography (EEG) and brain imaging studies of children at risk show reproducible differences in brain activity before 12 months of age.19, 20 A study supported through the American Recovery and Reinvestment Act (ARRA) identified an innovative technique for advancing accurate, early diagnosis of ASD. Using a brain imaging technology known as diffusion tensor imaging (DTI), researchers discovered deficits in neuronal fibers that conduct long-distance communications between brain regions. The investigators were able to use this non-invasive, anatomically based imaging technique to distinguish–with high accuracy–between individuals with ASD and those serving as controls. Another group of ARRA-funded researchers also demonstrated an accurate method to assess the risk of ASD in infancy through the analysis of older affected siblings as predictors of ASD recurrence. In this prospective study, investigators analyzed data from 664 infants who had older siblings with ASD and were able to develop a reliable estimate of the risk for ASD among these infants via the Autism Diagnostic Observation Schedule (ADOS) and a clinical diagnosis from an expert clinician conducted at 36 months.21 Additionally, investigators at an Autism Center of Excellence demonstrated the feasibility and effectiveness of conducting a 5-minute screener, consisting of a simple survey that can be filled out by a parent during a child's 1-year well-baby check-up that can be used to detect subtle signs of ASD around the age of one year.22
Understanding the underlying causes of autism will likely lead to improved treatment and risk reduction
Three studies point to potentially modifiable risk factors for ASD. First, as part of the Childhood Autism Risk from Genes and Environment (CHARGE) study, researchers found a protective association in children and mothers who carried a common genetic variant linked to inefficient folate metabolism. This finding indicates that a sufficient amount of supplemental folic acid in the first month of pregnancy may reduce a child's risk for ASD.23 Second, a separate large population-based study in Norway, designed to examine the potential role of a number of prenatal and perinatal risk factors, found evidence supporting a protective role for folic acid. Initial results demonstrate that prenatal folic acid supplementation is associated witha decreased risk for autism.24 Third, reports of specific genetic mutations that cause alterations in the synthesis of carnitine, a chemical involved in fat metabolism, suggest that dietary treatments may be helpful in treating some forms of ASD.25 Three independent studies by the Autism Sequencing Consortium found that an increased risk of ASD was associated with spontaneous genetic mutations found more commonly among older fathers.26, 27, 28 Finally, several environmental factors, such as exposure to air pollution, agricultural pesticides, and antidepressants, have been reported to increase ASD risk, mostly based on exposure during pregnancy.29, 30, 31
Funding Opportunity Announcements
The NIH continues to encourage rigorous, evidenced-based research on ASD through both investigator-initiated and targeted Funding Opportunity Announcements (FOAs). Overall NIH funding for ASD research (excluding 2010 ARRA funds) increased by 5.7 percent from FY 2010 to FY 2011, and by 13.9 percent from FY 2011 to FY 2012. The three standing FOAs that broadly solicit ASD research (PA-13-216, PA-13-217, PA-13-218) continue to encourage research that addresses the objectives of the IACC Strategic Plan for Autism Spectrum Disorder Research. NIH has intensified efforts to bring much-needed treatments and interventions to affected individuals through several targeted FOAs that invite research on services for individuals with ASD across the lifespan (RFA-MH-14-100, RFA-MH-14-101, RFA-MH-102). In addition, a number of FOAs that were not specifically focused on ASD were successful in stimulating research studies relevant to ASD (PAR-11-177, PA-11-283, PAR-13-195, and PAR-13-213). For more information about ASD research projects funded by the NIH, please refer to the IACC portfolio analysis web tool or the NIH RePORT website.
Building Resources and Infrastructure
The IACC Strategic Plan highlights the importance of data sharing. Most autism researchers whose research involves human subjects have now made data sharing with the NIH National Database for Autism Research (NDAR) part of their proposed research. Sharing data with NDAR will allow other researchers to use and extend the initial research. In addition, other private and public autism organizations such as the Autism Genetic Resource Exchange (AGRE), the Autism Tissue Program (ATP), and the Interactive Autism Network (IAN) are now linked with NDAR. Collectively, this means that de-identified data from more than 61,000 consenting research participants are available across more than 400 clinical, imaging, and genomic instruments for secondary analysis by other qualified researchers. NDAR now holds over 100 terabytes of data, including genomic data from 10,000 subjects and imaging data from 600 subjects. All data within NDAR are harmonized (e.g., uses the same names for each piece of data collected) and validated (e.g., reported values are consistent with the expectations for that piece of information) to a community-established common data definition. More than 900 peer-reviewed papers refer to data that have been deposited in NDAR, and papers based on data pulled from NDAR are starting to appear.
NIH is also contributing to research infrastructure to accelerate the pace of ASD research. For example, one objective of the IACC Strategic Plan involves donation of brain and tissue samples to biobanks and subsequent access and use of these biospecimens by ASD researchers. The NIH Brain and Tissue Bank for Developmental Disorders is a dedicated pediatric repository for tissues from individuals with autism and other developmental and hereditary conditions. The bank is designed to systematically collect, store, and distribute brain and other tissues for research dedicated to the improved understanding, care, and treatment of individuals with developmental disabilities, including ASD.
Autism Centers of Excellence
NIH continues to support the Autism Centers of Excellence (ACE) program described in the CAA of 2006. Initially funded in FY 2007-FY 2008, the ACE program is composed of both individual research centers at a single institution and networks of research teams at different institutions working together on a common research problem. The ACEs are designed to conduct intensive and coordinated research programs into the causes of ASD and to develop and disseminate new interventions and treatments. In 2012, NIH made nine new ACE awards—three centers and six networks—to be funded over 5 years. In 2013, two additional networks were awarded. The Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), the National Institute of Mental Health (NIMH), the National Institute of Neurological Disorders and Stroke (NINDS), the National Institute on Deafness and Other Communication Disorders (NIDCD), and the National Institute of Environmental Health Sciences (NIEHS) support the ACE program. The newly awarded ACEs will address a variety of critical research areas, such as using brain imaging technology to chart brain development of children at risk for ASD; identifying potential environmental and familial factors that may confer autism risk; investigating sex differences in ASD; evaluating the effectiveness of widely-used treatments to improve social interaction and communication, including exploring mechanisms of verbal communication and new interventions for minimally verbal children with ASD; and developing effective in-school and at-home interventions for youngsters with ASD.
In 2011, through a National Association of University Centers on Disabilities (AUCD) research grant, the NIH co-funded the Minneapolis Autism Prevalence Study, headed by the CDC. Details on this study can be found within the CDC's description of ASD progress and expenditures in Table 5.
NIH-Wide Research Programs
NIH has initiated activities focused on identifying environmental and genetic risk factors for ASD, as recommended in objectives of the IACC Strategic Plan, such as the Early Autism Risk Longitudinal Investigation (EARLI), a clinical study that is following mothers and babies through pregnancy during the first 3 years of life. Because the study is relatively new, very few babies have reached the critical period of three years when a definitive ASD diagnosis can be made. To date, the study has issued one publication describing the study design and benefits, but has not yet published results.32
On the NIH campus, federal scientists in the NIMH Division of Intramural Research Program (DIRP) are running clinical studies on ASD, as well as a screening protocol to provide careful diagnostic evaluations to assess the presence of ASD symptoms. The DIRP is also conducting in-depth studies that follow children with ASD over the course of several years. Over 750 individuals have taken part in these studies, which have allowed researchers to explore potential brain markers that may be associated with ASD. Results of these studies include identification of a deficiency of the Rapid Eye Movement (REM) phase of sleep in children with ASD relative to typical children. A randomized controlled trial is now underway to determine if increasing REM sleep will benefit children with ASD. The NIMH DIRP also collaborates extensively with researchers in the external academic research community across the US. Together they conduct state-of-the-art investigations in areas such as neuroimaging, genome sequencing (to identify novel genetic abnormalities), and studies of "at-risk" populations, such as toddlers showing early signs of ASD and children with rare genetic abnormalities known to increase risk for ASD.
The Fogarty International Center's Brain Disorders in the Developing World: Research across the Lifespan (FIC BRAIN) program aims to enhance research capacity in the neurosciences in low- and middle-income country settings and has supported investigators working on ASD in Uganda, India, and Jamaica. Limited data exist on the prevalence of neurodevelopmental disabilities (NDDs) in developing countries. To address this issue in Uganda, FIC-funded investigators modified an existing, culturally-appropriate, neurodevelopment assessment tool to include questions on ASD. The researchers administered the household survey, door-to-door, to 1,169 children 2-9 years of age in both rural and urban settings.33 Follow-up clinical assessments were used to validate the accuracy of the survey. While the adapted survey successfully screened children with NDDs, it was no more successful than the original survey in identifying individuals with ASD. Nevertheless, the investigators suggest that strategies to develop more culturally-specific questions to screen for ASD may improve the sensitivity of this survey in the future. FIC BRAIN researchers funded in Jamaica are also engaged in studies to understand risk factors for ASD. One study demonstrated that both advanced maternal and paternal age are jointly associated with childhood ASD in Jamaica.34 A second FIC BRAIN-supported study found no link between blood mercury concentration acquired via seafood consumption and ASD in Jamaican children ages 2-8 years.35 The FIC BRAIN program has funded the International Clinical Epidemiology Network (INCLEN) in Delhi to conduct NDD screenings that will include questions on ASD at five different sites around India on a pilot sample of 953 cases and controls.
The NIMH Center for Collaborative Genomic Studies on Mental Disorders houses a large collection of samples from patients with ASD and their families. The Center stores and distributes biomaterials (DNA samples and cell lines), clinical data, and genetic data to aid researchers in identifying genetic variants involved in causing ASD. The Center has a collection of over 26,000 DNA samples from ASD patients and their family members, including approximately 9,000 samples from the Autism Genetic Resource Exchange—a program of Autism Speaks. The Center also provides links to the genetic data for biomaterials stored in other public data repositories, such as the NIH Database of Genotypes and Phenotypes and the National Database for Autism Research. The NIMH Stem Cell Resource, a recent expansion of the Center, stores stem cells and provides these cell lines to investigators.
The Center has enabled large scale genome wide association studies (GWAS) and sequencing efforts in ASD, such as the Psychiatric Genomic Consortium and the Autism Sequencing Consortium. The Center stores genetic data from GWAS studies on 7,015 cases and 8,755 case controls. Several significant genetic signals associated with ASD were found through these studies. Such findings establish the contribution of rare genetic variations and deletions or duplications of genetic material in the development of ASD, and identify the elements of shared genetic risk with other psychiatric disorders.
NIH Autism Funding by Institute/Center (FY 2010 – 2012)
|Participating Institutes/Centers||FY 2010 actual ARRA||FY 2010 Actual Base||FY 2011 Actual||FY 2012 Actual|
Table 13. National Institutes of Health Autism Funding (Dollars in Thousands).
NIH Autism Centers of Excellence (ACE) Program Funding
|Institutes||FY 2010 Actual||FY 2011 Actual||FY 2012 Actual|
Table 14. NIH expenditures (Dollars in Thousands) on the Autism Centers of Excellence (ACE) program, which includes centers (P50s), a cooperative agreement (U01), and networks (R01s).
In addition to the activities described above, the NIH participates as a member agency on the Interagency Autism Coordinating Committee.
Substance Abuse and Mental Health Services Administration (SAMHSA)
The Substance Abuse and Mental Health Services Administration (SAMHSA) does not have any programs or funding specifically focused on provisions of the CAA or for individuals on the autism spectrum. SAMHSA did not receive any American Recovery and Reinvestment Act (ARRA) funds and so did not implement ARRA-specific programs in 2009 or 2010.
Comprehensive Community Mental Health Services for Children and Their Families Program
The only SAMHSA program that involves individuals with autism spectrum disorder (ASD) is the Comprehensive Community Mental Health Services for Children with Serious Emotional Disturbances (PDF - 4.5 MB) (the short title for this program is Child Mental Health Initiative (CMHI)) which serves children and youth with serious emotional disorders. The service population of this program includes children with ASD only if there is a co-occurring serious emotional disturbance (Section 561 of the Public Health Service Act, as amended). The CMHI grant program provides funding to develop the infrastructure for a coordinated system of services and supports and to provide services to an eligible population. Children and their families served in this program are provided a full system of family-driven services and supports, delivered in home and community-based settings or in the least restrictive environment. Services are individualized, strengths-based and culturally competent. The system of care includes formal treatments and services and natural and community supports that are wrapped around the child and family to promote full functioning in the community. Services are coordinated by a Child and Family Team that individualizes services to the specific needs of the child.
Children with ASD, compared to children with other diagnoses, were most often referred to CMHI program services because of disruptive behaviors, social interaction difficulties and unusual behavior and less likely referred for drug use, truancy or running away. Some of the children with ASD had family histories of mental illness, substance abuse and domestic violence. In the CMHI treatment population, caregivers reported that over 18 percent of children with ASD had been physically abused and over 16 percent had been sexually abused.
In 2011, 24 1-year System of Care Expansion Planning grants were awarded to prepare states/communities for service delivery implementation at an approximate total of $18 million. In 2009 and 2010, 29 grantees received approximately $9 million each, for 6 years, with ascending match requirements. Out of 6,418 cases with a diagnosis from these 29 CMHI-funded communities, there were 180 total cases on the autistic spectrum (equivalent to 2.8 percent of all children/youth with a diagnosis served in CMHI).
Behavioral Health Electronic Clinical Quality Measure Development Project
In FY 2012, SAMHSA supported the Behavioral Health Electronic Clinical Quality Measure Development project (funding: $450,000 in FY 2011 awarded in FY 2012), which developed, tested, and validated electronically-specified clinical quality measures related to primary care screening for depression, suicide, drug use, alcohol use, trauma, and autism. These clinical quality measures were designed for potential inclusion in the Centers for Medicare & Medicaid Services (CMS) Electronic Health Record (EHR) Incentive Program, which is a program that provides incentives to eligible professionals and hospitals for adopting, implementing, upgrading, or demonstrating meaningful use of certified electronic health record technology to improve and enhance patient care. The project was coordinated with the HHS Office of the National Coordinator for Health Information Technology (ONC) and CMS measurement development, testing and validation activities. The project aimed to develop consensus on the issues surrounding clinical quality of care measures, define additional quality measures that need to be developed to support quality care, complete technical and electronic specifications, and perform field testing when necessary. These measures may be used to facilitate the measurement of disparities in early diagnosis and screening.
Department of Education (ED)
The Department of Education (ED) supports programs to develop and implement interventions for individuals with ASD. Although the Department of Education (ED) does not receive appropriations under the Combating Autism Act, ED does contribute significantly to ASD-related services and supports under the Individuals with Disabilities Education Act (IDEA). IDEA Part B and Part C authorize formula-based grants to states to improve results for infants, toddlers, children, and youth with disabilities, from ages birth through 21. Under IDEA Part C, states must make available appropriate early intervention services to infants and toddlers with disabilities from birth through age two. Under IDEA Part B, states must make available a free, appropriate, public education to eligible children with disabilities, including children with autism, from ages 3 through 21.
Institute of Education Sciences
ED's Institute of Education Sciences (IES) houses the National Center for Special Education Research (NCSER), which supports research designed to improve educational and developmental outcomes for infants, toddlers, children, and youth with disabilities or those at risk for disabilities. NCSER's Autism Spectrum Disorders topic funds projects that develop or test the effectiveness of comprehensive preschool and school-based interventions that improve the developmental, cognitive, communicative, academic, social, behavioral, and functional outcomes of children with ASD. Additional grant programs within NCSER support research targeted toward a single outcome (e.g., social) or focused on infants and toddlers with ASD. The ED Small Business Innovation Research (SBIR) program, which provides funds to small businesses for the research and development (R&D) of commercially viable education technology products, has funded a number of projects aimed at helping children with autism. The Postdoctoral Research Training in Special Education program supports programs within institutions of higher education that train postdoctoral fellows in conducting special education research, with some programs including autism research as a training focus. In FY 2012, NCSER began funding a new Research and Development Center, the Center for Secondary Education in Students with Autism Spectrum Disorders. These programs are not specifically in place to implement the CAA. NCSER is authorized through the Individuals with Disabilities Act (IDEA; P.L. 108-446, PDF - 422 KB) that amended the Education Sciences Reform Act to include NCSER as the fourth IES Center.
Department of Education Institute of Education Services (IES) ASD-Related Funding
(FY 2010 – FY 2012)
|FY 2010||FY 2011||FY 2012||FY 2010-FY 2012|
|IES funds for autism||$11,716,635||$5,630,463||$8,342,165||$25,689,263|
Table 15. Institute of Education Sciences (IES) total funds spent on projects with a specific focus on autism. These total amounts include three postdoctoral research training program grants in which autism research is just one of several training foci. The remaining awards are National Center for Special Education Research-funded research projects that have a total or partial focus on children with autism.
Please also note that these are the total funds actually provided to the projects in the fiscal years specified above. For grants awarded in 2010, the entire award amount was forward funded in 2010 no matter how many years the project period included, which accounts for the higher expenditure that year relative to the next 2 years. In 2011 and 2012, most awards were not fully forward funded, though some were forward funded an additional year.
Office of Special Education Programs (OSEP)
Office of Special Education Programs (OSEP) funds grants with a focus on ASD. These grants are not specifically in place to implement the CAA. OSEP funds grants that prepare doctoral level personnel to conduct research and teach within the area of ASD. OSEP also funds grants that prepare master's level personnel (e.g. early interventionists, special educators, and related services providers) to serve children with ASD. Additionally, OSEP funds State Personnel Development Grants, which provide funds to State Educational Agencies to provide in-service professional development to special educators. Grantees may focus the professional development on ASD. The authority to administer these grants is in Section D of the Individuals with Disabilities Education Act.
OSEP also funds projects that, while they may not focus specifically on children with ASD, generate products and services that are relevant to children with ASD. For example, OSEP funds the Center on Positive Behavioral Interventions and Supports (PBIS). This Center gives schools capacity-building information and technical assistance for identifying, adapting, and sustaining effective school-wide disciplinary practices and provides resources on how to prevent and address challenging behavior. In 2012, the Department of Education released a Restraint and Seclusion: Resource Document that outlines principles for educators, parents and other stakeholders to consider when developing or refining policies and procedures for schools to support positive behavioral interventions and avoid the use of restraint and seclusion. While this publication is not specific to children with ASD, it is relevant to children with ASD and other disabilities.
Department of Education Office of Special Education Programs (OSEP) ASD-Related Funding (FY 2010 – FY 2012)
|FY 2010||FY 2011||FY 2012||FY 2010-FY 2012|
|Office of Special Education Programs||$2,500,000||$3,000,000||$2,000,000||$7,500,000|
Table 16. Office of Special Education Programs (OSEP) Expenditures by FY. The amounts expended were not specifically for the implementation of the CAA. The grants are authorized under Part D of the Individuals with Disabilities Education Act. The amounts are new awards to prepare doctoral level and master level personnel with a focus on autism spectrum disorder.
OSEP also supports the National Professional Development Center on Autism Spectrum Disorders, a multi-university center to promote the use of evidence-based practice for children and adolescents with autism spectrum disorder. The Center works in coordination with each state's Department of Education and IDEA Part C agency to provide professional development to practitioners who serve children from birth through age 21 years with autism spectrum disorder. The Center has developed resources and modules on evidence-based practices for children with autism spectrum disorder and provided training to professional development providers and practitioners on the use of these evidence-based practices.
Through Parent Training and Information Centers across the nation, ED provides training for parents of children with ASD. These parent centers, comprised of Parent Training and Information Centers (PTIs) and Community Parent Resource Centers (CPRCs), provide training and assistance to families of children with disabilities, including families of children with autism. These Centers provide a variety of services including one-to-one support and assistance, workshops, publications, and websites, and they help families to:
- Better understand their children's disabilities and educational, developmental, and transitional needs
- Communicate more effectively with special education, early intervention, and related services professionals
- Understand their rights and responsibilities under the Individuals with Disabilities Education Act (IDEA)
- Connect with other local, state, and national resources that assist children with disabilities
National Institute on Disability and Rehabilitation Research (NIDRR)
The National Institute on Disability and Rehabilitation Research (NIDRR), in the U.S. Department of Education, is authorized by the Rehabilitation Act to fund research related to disability in general. There is no authorization that specifically addresses research in the area of ASD.
Department of Education NIDRR ASD-Related Funding (FY 2010 – FY 2012)
|FY 2010||FY 2011||FY 2012||FY 2010-FY 2012|
|NIDRR Funds for ASD Research||$1,695,286||$2,032,996||$2,375,664||$6,103,946|
Table 17. National Institute on Disability and Rehabilitation Research (NIDRR) Funds for ASD Research by FY. Amounts expended were not specifically for implementation of the CAA.
The Office of Postsecondary Education (OPE) grant program is authorized under The Higher Education Act of 1965, as amended, Title VII, Part B. One small part of this grant's activities is related to autism, but this grant program is specifically targeted for undergraduate students who are going to study in Brazil to take coursework on items such as, "cross-linguistic communication disabilities in children resulting from diverse etiologies; including cleft lip and/or palate, children with speech disorders, hearing impairment, and autism spectrum disorders." The grant was first awarded in FY 2010 as a 4-year grant. So far, two annual reports for this grant have been submitted and do not yet reference autism-related activities. The primary component of this grant is student exchange between the U.S. and Brazil. In FY 2009, an award was made to Texas A&M University for a project to develop a research-based Master's Degree in Education Interventions for Autism. An innovative Teacher Quality evaluation model was embedded within the degree program to respond to the call in the professional literature for a Teacher Quality evaluation model in special education. No new monies were expended for this project in following fiscal years. This grant has now been completed, a final reported received, and a response prepared.
Interagency Committee on Disability Research (ICDR)
Authorized by the 1973 Rehabilitation Act, the Interagency Committee on Disability Research (ICDR) was established "to promote interagency disability research coordination and collaboration, and enhance communication and information sharing among federal agencies and stakeholders conducting rehabilitation research programs and activities." The mission of the ICDR is to identify, assess, and coordinate all federal programs, activities, projects, and relevant plans with respect to research related to rehabilitation of individuals with disabilities. To fulfill this mission, the ICDR:
- Gathers information from individuals with disabilities and their representatives
- Recommends activities to be funded through grants, contracts, cooperative agreements and other mechanisms
- Promotes joint research
- Seeks to prevent unnecessary duplication of research efforts
- Encourages a cohesive strategic program of federal disability and rehabilitation research
The ICDR continuously secures input from a broad range of stakeholders with diverse interests and perspectives, thus utilizing the spectrum of knowledge and experience available from subject matter experts within the federal government and the non-federal community. Individuals serving in positions designated as an ICDR member by the President provide leadership and oversight for the committee. These individuals are referred to as ICDR statutory members. Through committee activities, the statutory members secure the input of other federal departments, offices, and agencies that are referred to as non-statutory members.
In addition to the activities described above, the Department of Education participates as a member agency on the Interagency Autism Coordinating Committee.
Other Agencies and Departments
The Environmental Protection Agency, Department of Defense, and the National Science Foundation are not mentioned in and do not have programs authorized under the CAA or CARA, but they have provided information about their relevant programs and projects in this report to help Congress understand their contributions to the federal ASD effort, along with HHS and ED.
Environmental Protection Agency (EPA)
The U.S. Environmental Protection Agency (EPA) aims to protect human health and the environment through such activities as the development and enforcement of environmental regulations, the support of grants and laboratories for scientific research and the publication of materials for public access. The EPA does not receive appropriations under the CAA or CARA, but EPA has collaborated with the National Institute of Environmental Health Sciences (NIEHS) to establish the Center for Children's Environmental Health (CCEH) at the University of California, Davis. Research at this Center focuses on understanding risk factors that may contribute to a person's susceptibility to neurodevelopmental disorders such as autism. Researchers at CCEH study how environmental exposures can interact with a person's genes and immune system to influence the risk and severity of autism. Through both epidemiological and rodent models, the center's scientists are looking into how environmental triggers affect brain development. They are also examining how biological markers, such as those related to immune system dysfunction, could help clarify why some children develop these disorders. Ultimately, their aim is to improve autism diagnosis and treatment and better inform the public about managing and preventing developmental disorders such as autism. In fiscal years 2006-2013, both EPA and NIEHS each contributed close to $4 million in funding to support the CCEH and the Center is expected to receive additional grants of about $4 million from each agency (about $8 million total) between fiscal years 2013 and 2017.
Department of Defense (DoD)
Department of Defense-Autism Research Program (DoD-ARP)
The Department of Defense, United States Army Medical Research and Material Command, Office of Congressionally Directed Medical Research Programs (CDMRP) executes and manages funding programs under the Defense Health Research Program. The Defense Health Research Program is appropriated yearly by the US Congress designating funding programs for a variety of diseases, conditions and injuries that affect military families, including autism. The DoD-Autism Research Program (DoD-ARP) was first established through language in the 109th United States Congress, House of Representatives Conference Report (H.R. 5631) in FY 2007 with an appropriation of $7.5 million for research on Autism Spectrum Disorder in the military. Following in FY 2008 through FY 2013, the DoD-ARP has continued through the Defense Health Program with additional appropriations. From FY 2007-FY 2013, a total of $47.4 million has been designated for research into ASD through an addition to the Department of Defense appropriation bill. This program is not authorized or funded through the Combating Autism Act.
From the beginning of the program, the vision and mission of the ARP has been to improve the lives of individuals with ASD now by promoting innovative research that advances the understanding of ASD and leads to improved outcomes. The initiative to improve lives of individuals with ASD now has spurred the funding of important work including the recent study, highlighted by the IACC ASD Research Portfolio Analysis, by Dr. Paul Patterson from the California Institute of Technology where he showed that beneficial gastrointestinal bacteria can ameliorate both immune and behavioral issues associated with ASD.36
Environmental exposures and probable effects on the development of ASD have been one of the focus areas of the ARP through the funding years. In an effort to understand the causative agents of ASD, Drs. Alberto Ascherio (Harvard School of Public Health), Marc Weisskopf (Harvard University), and Susan Santangelo (Massachusetts General Hospital) were funded by the ARP in a joint effort and examined maternal risk factors for ASD. Dr. Weisskopf reported that exposure to high pollution levels during pregnancy may increase the risk of ASD.37
One critical initiative of the ARP is funding research which will help allow greater access to early intervention for children with ASD. Access to professionals trained in early intervention is an issue for those in demographically underserved areas as well as military families due to deployments and reassignments. To address this issue, the ARP funded Dr. Wayne Fisher at the University of Nebraska Medical Center to develop a technology based early intervention service training for paraprofessionals. Through telemedicine training of paraprofessionals within remote or demographically underserved areas, Dr. Fisher is answering one critical need in the ASD community today – access to care.
Each year the advisory board of the ARP, consisting of scientists, clinicians, psychologists, and consumer advocates, reviews and revises the initiatives and focus areas of the program to respond to the needs of the research and consumer community alike. The ARP is a partnership between the Department of Defense, researchers, and consumers with a mission to improve the outcomes of individuals with autism now.
Office of Community Support for Military Families with Special Needs (OSN)
The Department of Defense (DoD) Office of Community Support for Military Families with Special Needs (OSN) is responsible for establishing policy and overseeing the implementation of the Exceptional Family Member Program (EFMP) and the provision of early intervention services and special education within the DoD. The EFMP is a multi-component mandatory enrollment program serving military families with special needs and includes identification of the family member's special needs and enrollment in the program as well as assignment coordination and family support. Over 126,000 military family members are enrolled in the EFMP, including children and adults who have autism spectrum disorder (ASD).
All military installations currently have either a full-time or part-time EFMP family support staff person or point of contact for military families with special needs. Military OneSource is also a DoD-funded "one-stop" call center providing resources and support to military services members and their families 24 hours a day, 7 days a week. One important component of Military OneSource is the telephonic consultations that are available from their Special Needs Specialty Consultants. In 2012, over 2,500 military families received special needs consultations. Military OneSource also has a Special Needs/EFMP web page providing military families with special needs, including ASD, with access to 12 online learning modules on a variety of disability-related topics as well as other valuable information, tools and resources.
The OSN has been collaborating with the U.S. Department of Agriculture under a memorandum of understanding (MOU) that addresses certain research efforts by land-grant universities and the Cooperative Extension Services. The following research has been conducted:
- Education Services for Military Dependent Children with Disabilities: In 2010, the Ohio State University conducted a review to identify special education services for children age 3 to 21 in public schools near installations with a large military population that serve military children. More specifically, the review included the access and availability of evidence-based educational practices for military dependent children with ASD, intellectual disabilities and emotional disorders. A review of early intervention services for infants and toddlers with disabilities (birth to 3) in 15 states with high concentrations of military families was also conducted. A product of the review has been the development of an online Education Directory for Children with Special Needs. The directory provides families with tools and resources to help with the transition to a new location such as information to make informed decisions about the availability of educational services and to assist with making a smooth transition from one public school district to another within the United States. The directory will be expanded this year to include all 50 states.
- Medicaid Study: West Virginia University has conducted field research, data and regulatory analyses for the Medicaid Study to determine to what extent military families with special needs are accessing Medicaid Waiver services and to examine the issues families face when attempting to access these services especially as they relocate from state to state. Qualitative data has been gathered from the six joint military base installation site visits. An analysis of findings is being conducted and findings and recommendations for legislative or policy changes will be published this year.
- Benchmark Study: Cornell University and the Beach Center of the University of Kansas has conducted a benchmark study to identify the concerns of military families with special needs, the support they require, and the systems that have been effective in providing services. The research team has conducted focus groups with military families from all of the Services. The final report will be published in 2013 and include recommendations for OSN and the military Departments for the standardization and enhancement of EFMP family support services across DoD.
- The Family Support Metrics project, a continuation of the Benchmark Study, supports the Department in its efforts to standardize outcome data for families using the EFMP family support program. Cornell University, in coordination with OSN, is conducting a study to develop standardized metrics across the DoD on program activities and family outcomes for the EFMP family support services. The set of reporting requirements based on research findings will provide actionable data so that the OSN and military Services can assess services being provided and how well Service member and family member needs are being met.
Although the Department of Defense (DoD) is not one of the federal agencies identified under the 2006 Combating Autism Act (CAA), the Department is pleased to report on recent developments regarding TRICARE benefits designed to help meet the needs of all military families affected by ASD.
TRICARE offers physician services, pharmacy coverage, psychosocial treatment, psychological testing, occupational therapy (OT), physical therapy (PT) and speech and language pathology (SLP) for the treatment of ASD to all eligible TRICARE beneficiaries under the TRICARE Basic Program, which is the medical benefit plan of the Military Health System (MHS). A separate program, the Extended Care Health Option (ECHO), offers supplemental services to Active Duty Family Members (ADFMs) with a qualifying physical or psychologically disabling condition, including ASD. Prior to July 26, 2012, Applied Behavior Analysis (ABA) provided by Board Certified Behavior Analysts at the master's-level (BCBA) or doctoral-level (BCBA-D) has been offered to ADFMs under ECHO and its predecessor program since 2001. In 2008, the Department implemented the ECHO Enhanced Access to Autism Services Demonstration (or ECHO Autism Demonstration) for ADFMs to provide ABA reinforcement under a tiered service delivery model where ABA reinforcement is administered by ABA "technicians" or "tutors" working under the supervision of a BCBA. The number of beneficiaries receiving services for ASD under ECHO has almost tripled, from 2,292 beneficiaries in FY 2009 shortly after the ECHO Autism Demonstration began to a total of 6,560 beneficiaries in FY 2012. Government costs for ECHO program participants with an ASD diagnosis in FY 2012 totaled $107.7 million dollars. The ECHO Autism Demonstration continues to provide ABA under the tiered model described above to ADFMs.
Since July 26, 2012, TRICARE has cost-shared ABA provided by BCBAs and BCBA-Ds under the TRICARE Basic program for all eligible TRICARE beneficiaries, both ADFMs and Non-ADFMS (e.g., retirees, eligible Reservists, and eligible family members). On June 25, 2013, DoD published this revised TRICARE Basic Program policy and a new policy, the ABA Pilot for Non-Active Duty Family Members (NADFMs) (PDF - 185 KB), which was scheduled to begin July 25, 2013. The ABA Pilot is authorized by Section 705, National Defense Authorization Act FY 2013 for 12 months and requires DoD to submit a report to Congress regarding the cost of extending this coverage, as well as any recommendations for additional legislation, within 270 days of enactment. The ABA Pilot will offer one year of ABA reinforcement under the tiered service delivery model (analogous to the ECHO Autism Demonstration for ADFMs) to NADFMs for the first time.)
Department of Defense-Air Force (AF)
The Department of Defense-Air Force (AF) first became involved with ASD research in 2008 when it was designated to manage a congressionally funded project sponsored by Senator Deborah Pryce (R-OH). The project, Comprehensive Clinical Phenotyping and Genetic Mapping for the Discovery of Autism Susceptibility Genes (2009-2012; Nationwide Children's Hospital, Ohio), was a collaborative effort between Nationwide Children's Hospital (NCH); Wright Patterson Medical Center (WPMC), Wright Patterson Air Force Base; and Dayton Children's Medical Center (DCMC). The purpose of this project was to develop a multidisciplinary autism research and services program for military families enrolled at WPMC as well as other central Ohio families enrolled at NCH. The specific aims of the project included expansion of the Central Ohio Registry for Autism (CORA) to provide higher quality data for autism clinical and genetics research and expansion of clinical services to WPAFB families through a subcontract with DCMC. The final aim included identification of autism susceptibility variants in candidate genes by gene sequencing at NCH's Center for Molecular Human Genetics, as well as screening for regulatory polymorphisms by measuring allelic mRNA expression imbalances at The Ohio State University.
In 2012, the AF, using research, development, technology, and evaluation dollars, funded the follow-on effort, A Collaborative Translational Autism Research Program for the Military (2012-2015; Nationwide Children's Hospital, Ohio). This collaborative research project enables the continued expansion of the CORA as well as the performance of exome sequencing on at least 60 individuals in CORA per year (20 trios of an affected child and both parents) and whole transcriptome RNA sequencing to discover new DNA variants affecting regulation and expression of RNA in the brain. The project proposes to enroll 150 families from central Ohio in which one or more family members have a diagnosis of an ASD. Approximately 50 percent of the families will be enrolled in collaboration with developmental pediatricians at WPMC. Families enrolled in CORA will be able to participate in cutting edge molecular and genetic research studies. Direct benefits to families from WPMC will include improved clinical care through the interaction of the WPAFB developmental pediatricians with an experienced clinical geneticist with expertise in the genetics of autism. In addition, families will receive a newsletter twice a year that will contain important information about autism, CORA, and ongoing research studies. Medically significant findings from the research will be shared with families who have indicated on the consent forms that they wish to receive this information.
In addition to the activities described above, the Department of Defense participates as a member agency on the Interagency Autism Coordinating Committee.
National Science Foundation (NSF)
The mission of the National Science Foundation (NSF) is to promote the progress of science; to advance the national health, prosperity, and welfare; and to secure the national defense. NSF is the only federal agency whose mission includes support for all fields of fundamental science and engineering, except for medical sciences. NSF has awarded numerous research grants through the years that include research on ASD and other developmental disabilities. These research awards, including current active awards, have been made across NSF's nine directorates.
In addition to NSF's contributions to the 2013 White House Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative via the agency's existing neuroscience and cognitive sciences portfolios, NSF's research awards in ASD fall under a portfolio that emphasizes education and learning research. One project highlighted in a NSF March 2013 article entitled, "NSF-funded Superhero Supercomputer Helps Battle Autism," describes a novel way of identifying a process in the brain that can be used to guide the development of treatments for mental disorders such as autism. A NSF article from January 2013 entitled, "Exploring the Brain's Relationship to Habits," describes a researcher's study of neurological conditions where repetitive movements commonly occur, including autism, and how the research may lead to novel treatments and therapies. In addition to these examples, NSF's Human Resource Development division within the Directorate for Education and Human Resources includes a Research in Disabilities Education Program. The National Science Foundation does not participate as a member agency on the Interagency Autism Coordinating Committee.
NSF Funding for Research Projects on Topics Related to ASD (FY 2010 – FY 2012)
|FY 2010||FY 2011||FY 2012|
|National Science Foundation (NSF)||$12,222,206||$1,428,639||$6,539,622|
Table 18. This table indicates the total amount expended in fiscal years 2010-2012 in support of basic science projects on topics related to autism spectrum disorder.
NIH publication No. 14-8012
All material appearing in this report is in the public domain and may be reproduced or copied. A suggested citation follows.
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