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IACC Home > Publications > Report to Congress > ASD Progress
Report to Congress Cover 2018

Report to Congress

on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities

FY 2014 - FY 2018

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Table of Contents | Appendices

ASD Progress and Expenditures


This chapter covers subsections (A) and (B) of Section 399DD of the Autism CARES Act, which require: (A) "A description of the progress made in implementing the provisions of the Autism CARES Act of 2014;" and (B) "A description of the amounts expended on the implementation of the particular provisions of the Autism CARES Act of 2014." 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, IHS, and SAMHSA, as well as ED and DoD. Additional details are provided from EPA, HUD, DOJ, DOL, NSF, SSA, and DOT, which also conduct activities that concern or are related to ASD.

Department of Health and Human Services

The mission of the U.S. Department of Health and Human Services (HHS) is to enhance and protect the health and well-being of all Americans by providing for effective health and human services and fostering advances in medicine, public health, and social services. HHS includes more than 300 programs and 11 operating divisions covering a wide spectrum of activities. The 10 HHS operating divisions represented in this report support research and services that address the needs of individuals with ASD and their families.

Administration for Children and Families

The Administration for Children and 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 to have a positive impact on quality of life and the development of children;
  • Improve access to services through planning, reform and integration;
  • Create partnerships with front-line service providers, states, localities, and tribal communities to identify and implement solutions that transcend traditional program boundaries; and
  • Address the needs, strengths and abilities of vulnerable populations including people with developmental disabilities (DD), refugees and migrants.

The ACF does not have any programs or funding specifically focused on provisions of the Autism CARES Act or for individuals on the autism spectrum. However, ACF funds Head Start services, including those for children with ASD. 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. Table 3 outlines the total funds spent on Head Start services for children with ASD between 2014 and 2017.

In April of 2013, ACF launched a web page, "Autism Awareness and Acceptance in Early Childhood Education," which focuses 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 to the ASD website, ACF has focused its attention on developmental and behavioral screening. While the emphasis of this priority is broad screening, rather than screening for specific disorders, the initiative has helped 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 the Tribal Early Childhood Research Center to do a feasibility study of the Survey of Well-Being of Young Children. The study examined the use of a first-line screening instrument on Native American reservations. The instrument includes an ASD screen as part of a broader screen of development. The study assessed the cultural sensitivity of each individual item in the screening instrument. This was the first time a developmental and behavioral screening instrument had been tested or culturally adapted to fit the needs of young Native American children. The results of this feasibility study were published in 2015, and additional information and resources from the study are available online.

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.

Interagency Coordination and Implementation of the IACC Strategic Plan

ACF serves as a member agency on the Interagency Autism Coordinating Committee (IACC) and the Federal Interagency Workgroup on ASD (FIWA). ACF research activities described above address Question 1 (Screening and Diagnosis) of the IACC Strategic Plan.

ACF Head Start ASD-Related Expenditures, (FY 2014 - FY 2018)
FY 2014 FY 2015 FY 2016 FY 2017

FY 2014

$21.8M

FY 2015

$24.1M

FY 2016

$31.6M

FY 2017

$29.2M

Table 3. ACF Head Start Expenditures for Children with ASD, FY 2014 - FY 2017 (Millions)


Administration for Community Living

The Administration for Community Living (ACL) works to increase access to community support systems for older Americans and for people with disabilities across the lifespan. Its main activities and statutory authorities include administration of disability programs that support community living from which individuals with ASD may benefit.

National Institute on Disability, Independent Living, and Rehabilitation Research

The National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) within ACL conducts research and development in disability and rehabilitation (including research and development in ASD) as authorized by the Workforce Innovation and Opportunity Act (WIOA), 45 CFR Part 1330.

Research in autism currently funded by NIDILRR is field initiated, i.e. the projects were developed and proposed by researchers in the field. None of these projects were agency-directed, but they do address Questions 4, 5, and 6 of the IACC Strategic Plan.

Current projects include work in the following areas:

Administration on Intellectual and Developmental Disabilities

The Administration on Intellectual and Developmental Disabilities (AIDD) within ACL provides oversight of the following programs authorized under the Developmental Disabilities Assistance and Bill of Rights Act (DD Act):

  • State Councils on Developmental Disabilities
  • Protection and Advocacy Systems
  • University Centers for Excellence in Developmental Disabilities (UCEDD)

These programs carry out a variety of activities in states and territories to assure that individuals with DD and their families participate in the design of and have access to needed community services, individualized supports, and other forms of assistance that promote self-determination, independence, productivity, and integration and inclusion in all facets of community life.

Interagency Coordination and Implementation of the IACC Strategic Plan

ACL participates as a member agency on the IACC and the FIWA.

While the DD Act programs listed above do not focus specifically on individuals with ASD, their work to improve the quality of life of individuals with DD will address the needs of such individuals in the following areas under the 2016-2017 IACC Strategic Plan for ASD:

  • Question 5 (Services)
    • Scale up and implement evidence-based interventions in community settings.
    • Reduce disparities in access and in outcomes for underserved populations.
    • Improve service models to ensure consistency of care across many domains with the goal of maximizing outcomes and improving the value that individuals get from services.
  • Question 6 (Lifespan Issues)
    • Support development and coordination of integrated services to help youth make a successful transition to adulthood and provide supports throughout the lifespan.
    • Support research and implement approaches to reduce disabling co-occurring physical and mental health conditions in adults with ASD, with the goal of improving safety, reducing premature mortality, and enhancing quality of life.
    • Support research, services activities, and outreach efforts that facilitate and incorporate acceptance, accommodation, inclusion, independence, and integration of people on the autism spectrum into society.

In addition, NIDILRR is funding research efforts that address these two Questions with results as described above.

ACL/NIDILRR ASD-Related Expenditures, (2014-2018)
2014 2015 2016 2017 2018

2014

$1,856, 443

2015

$1,728,392

2016

$2,073,019

2017

$1,222,987

2018

$1,189,960

Table 4. ACL/NIDILRR funding* for projects focused on ASD, 2014-2018
*funded under the Workforce Innovation and Opportunity Act (WIOA)

Agency for Healthcare Research and Quality

The Agency for Healthcare Research and Quality (AHRQ) produces evidence for the nation focused on health care safety and quality. AHRQ does not receive funds from the Autism CARES Act but does support research to determine the effectiveness and outcomes of interventions for individuals with ASD. These research projects and AHRQ publications are described below.

AHRQ-funded Research Projects

"Adapting Electronic Medical Record to Measure Medical Outcomes in ASD Populations" aims to better understand the hospital-based and outpatient healthcare utilization patterns of patients with ASD. The researchers will develop methods for using an Electronic Medical Record (EMR) to capture and to measure medical treatment utilization patterns among patients with ASD, including primary care, specialty, and urgent care/emergency department use. They will also create the necessary data warehouse to support this comparative effectiveness research of medical treatments in patients with ASD. In the long term, the experience and data generated by this Mentored Research Scientist Development Award are expected to lead to larger studies implementing comparative effectiveness research using multi-site data warehouses.

"Creating Integrated Healthcare Services for People with Autism Spectrum Disorder" supported a conference that aimed to stimulate new and different approaches to the provision of medical care to people with ASD across the lifespan. The conference brought together healthcare providers to promote interdisciplinary discussion of ways enhance integrated healthcare services for people with ASD. It is expected that, over time, better integration of care will reduce costs, improve treatment outcomes, and improve the quality of life for people with ASD. Goals for participants and panelists at the conference included: a) defining and describing the ideal environmental, behavioral, and/or individual supports during the provision of medical care to people with ASD; b) identifying barriers to the delivery of integrated care in emergency departments and in-patient acute care settings; c) proposing technology or information system improvements to eliminate the barriers to inter-professional communication, across acute care settings; and d) defining measures to demonstrate effectiveness of policies to improve treatment outcomes and efficiency of care.

"Reducing Disparities in Timely Autism Diagnosis through Family Navigation" proposes to test the feasibility of an intervention to decrease disparities in timely ASD diagnosis that occur at a critical point in the continuum of the delivery of ASD services for young children. The patient navigation model has been implemented to reduce institutional- and individual-level barriers to cancer diagnoses and has demonstrated efficacy in both improving adherence to follow-up visits after a screening abnormality and decreasing the time from an abnormal screen to diagnostic resolution. This study will assess a novel application of patient navigation to support families of low-income and minority children, ages 15 months to 3 years. The researchers have reframed the model from patient to family navigation and will focus on a defined episode of care, beginning with an abnormal autism screen and ending with the completion of the diagnostic assessment.

"A Deliberative Approach to Develop Autism Data Collection in Massachusetts" is a health services research grant funded in 2016 that involves a deliberative citizen jury, the majority of which are individuals on the autism spectrum, to provide guidance to the Massachusetts Executive Office of Health and Human Services regarding the creation of a statewide registry for ASD. A patient registry is a collection of standardized information about a group of patients who share a particular condition or experience. When complete, the registry will provide an integrated data system to track diagnosis, treatment, services, and outcomes for individuals with ASD, with the long-term goal of improving coordination of care and disseminating information on best practices. The registry will also provide a way to track services and outcomes for various subpopulations of autistic individuals in Massachusetts.

"Partnership for Research & Dissemination of Evidence-Based Medicine in Autism" proposes to use innovative methods to develop customized content (including videos, webisodes, and interactive media products) of existing evidence-based medicine (EBM) products for ASD. The researchers will then disseminate this content through technology-based and social media channels to enable rapid and easy downloading by targeted stakeholder audiences, including parents of children with ASD as well as teachers and health care providers of autistic individuals from underserved populations. The trans-disciplinary team proposes to extend this work and develop a highly effective, unified, and sustainable high-throughput dissemination strategy to improve the use of customized EBM products at health and educational systems, clinical practice, caregiver, and family levels.

"Enabling large-scale research on autism spectrum disorders through automated processing of EHR using natural language understanding" aims to increase the utility of electronic health records (EHR) by developing scalable and effective computational methods to capture structured data from the text contained therein. This will be particularly advantageous in advancing knowledge about ASD and other mental health disorders, where records describe symptoms and interventions that are highly individualized and are often composed of rich data not easily captured in structured templates. This project has the potential to significantly shift away from the current paradigm of relying on small-scale data from individual ASD interventions and the lack of integration between different data sources, to leveraging information from existing large-scale data sources to propose novel analyses and hypotheses.

AHRQ Publications

Medical Therapies for Children with Autism Spectrum Disorder — An Update

The goal of this systematic review, published in 2017, was to evaluate the comparative effectiveness and safety of medical interventions for children with ASD. Studies of medical interventions that included at least 10 children with ASD were included. The 76 unique comparative studies meeting the inclusion criteria included 72 randomized controlled trials (RCTs), 2 non-randomized trials, and 2 retrospective cohort studies; populations, treatment approaches, and outcomes assessed varied across studies. Risperidone and aripiprazole ameliorated challenging behaviors in the short term, but with clinically significant side effects [high strength of evidence (SOE)]. Methylphenidate and atomoxetine were also associated with improvements in hyperactivity in small short-term RCTs (low SOE), with improvements maintained over 6 months for atomoxetine (low SOE for longer term effects). Methylphenidate was associated with clinically significant harms (low SOE), while atomoxetine was associated with clinically moderate harms (low SOE). Omega-3 fatty acid supplementation, N-acetylcysteine, and tetrahydrobiopterin failed to show benefits (low SOE). Evidence for other interventions and outcomes studied was insufficient. While the conduct of studies has improved considerably over time (i.e., growing number of RCTs and use of standardized measures), data on longer term (≥6 months) results and harms of most interventions are lacking. Similarly, more research is needed to understand characteristics of the child or treatment that modify outcomes, whether effectiveness of interventions generalizes across different settings such as the home or school, and how components of interventions may drive effects.

Interventions Targeting Sensory Challenges in Children with Autism Spectrum Disorder — An Update

The goal of this systematic review, published in 2017, was to evaluate the effectiveness and safety of interventions targeting sensory challenges in children with ASD. Studies included 20 RCTs, 1 nonrandomized trial, and 3 retrospective cohort studies (3 low, 10 moderate, and 11 high risk of bias); populations, intervention approaches, and outcomes assessed varied across studies. Some interventions targeting sensory challenges may produce modest short-term (<6 months) improvements, primarily in sensory-related outcomes and outcomes related to ASD symptom severity; however, the evidence base for any category of intervention is small, and durability of effects beyond the immediate intervention period is unclear. Sensory integration–based approaches improved outcomes related to sensory challenges (low SOE) and motor skills (low SOE), and massage improved sensory responses (low SOE) and ASD symptoms (low SOE). Environmental enrichment improved nonverbal cognitive skills (low SOE). Auditory integration–based approaches did not improve language outcomes (low SOE). Some positive effects were associated with other approaches studied (music therapy, weighted blankets), but findings in these small studies were not consistent (insufficient SOE). Data on longer term results are lacking, as are data on characteristics that modify outcomes, effectiveness of interventions across environments or contexts, and components of interventions that may drive effects. In sum, while some therapies may hold promise and warrant further study, substantial needs exist for continuing improvements in methodologic rigor in the field.

Therapies for Children With Autism Spectrum Disorder: Behavioral Interventions Update

This 2014 update of a prior systematic review of interventions for children (0–12 years) with ASD focused on recent studies of behavioral interventions. Sixty-five unique studies comprising 48 randomized trials and 17 non-randomized comparative studies (19 good, 39 fair, and 7 poor quality) were included in the analysis. The quality of studies improved compared with that reported in the earlier review; however, assessment of the SOE and confidence in the stability of effects of interventions in the face of future research, remains low for many intervention/outcome pairs. Early intervention based on high-intensity applied behavior analysis over extended timeframes was associated with improvement in cognitive functioning and language skills (moderate SOE for improvements in both outcomes) relative to community controls in some groups of young children. The magnitude of these effects varied across studies, potentially reflecting poorly understood modifying characteristics related to subgroups of children. Early intensive parent training programs modified parenting behaviors during interactions; however, data were more limited about their ability to improve developmental skills beyond language gains for some children (low SOE for positive effects on language). Social skills interventions varied in scope and intensity and showed some positive effects on social behaviors for older children in small studies (low SOE for positive effects on social skills). Studies of play/interaction-based approaches reported that joint attention interventions may demonstrate positive outcomes in preschool-age children with ASD when targeting joint attention skills (moderate SOE); data on the effects of such interventions in other areas were limited (low SOE for positive effects on play skills, language, social skills). Studies examining the effects of cognitive behavioral therapy on anxiety reported positive results in older children with IQs ≥70 (high SOE for improvements in anxiety in this population). Smaller short-term studies of other interventions reported some improvements in areas such as sleep and communication, but data were too sparse to assess their overall effectiveness. In summary, despite improvements in the quality of the included literature, a need remains for studies of interventions across settings and continued improvements in methodologic rigor. Substantial scientific advances are needed to enhance our understanding of which interventions are most effective for specific children with ASD and to isolate elements or components of interventions most associated with effects.

Genetic Testing for Developmental Disabilities, Intellectual Disability, and Autism Spectrum Disorder

This Technical Brief collects and summarizes information on genetic tests clinically available in the United States to detect genetic markers that predispose to DD. It also identifies, but does not systematically review, existing evidence addressing the tests' clinical utility. This Brief primarily focuses on patients with idiopathic or unexplained DD, particularly intellectual disability, global developmental delay, and ASD. Patient-centered health outcomes (e.g., functional or symptomatic improvement) and intermediate outcomes (e.g., changes in clinical decisions or family reproductive decisions, and the tests' diagnostic accuracy and analytic validity) are examined. A search of the Genetic Testing Registry database identified 672 laboratory-developed tests offered by 63 providers in 29 states. The authors also identified one test cleared by the Food and Drug Administration. Common genetic testing methods used include array comparative genomic hybridization, microarray, DNA sequencing (the Sanger method or next-generation sequencing), and polymerase chain reaction. The authors did not identify any studies that directly assessed the impact of genetic testing on health outcomes. Most of the clinical studies identified for indirect assessment of clinical utility are case series reporting on a test's diagnostic yield.

Screening for Autism Spectrum Disorder in Young Children, Systematic Evidence Review for the U.S. Preventive Services Task Force

This systematic review, published in 2016, examined the evidence about benefits and harms of routine screening for ASD in primary care settings, explicitly focusing on studies of screening instruments for use in young (≤36 months of age), unselected populations (e.g., universal screening approaches). The authors identified 17 unique screening studies reported in 22 papers. The most commonly studied tool was the Modified Checklist for Autism in Toddlers (M-CHAT), including the most recently available variant (M-CHAT-Revised with Follow-up [M-CHAT-R/F]), which has a positive predictive value of 48 percent in diverse populations of children ages 16 to 30 months. Forty-two studies of good and fair quality addressed interventions for young children. Among these, 20 studies overall measured cognitive outcomes and 11 reported greater benefit for the intervention group compared to the control group. Language outcomes were significantly improved in treatment versus comparison arms in 13 of 28 studies assessing language. Twelve studies focused on play and interaction and typically measured joint attention as the outcome. Nine out of 10 studies evaluating joint attention outcomes reported greater benefit in the treatment arm compared to the control arm. None of the studies focused on screen-detected children. In summary, early intensive interventions demonstrate statistically significant improvements in cognitive and language outcomes in children compared to eclectic treatments obtained in the community or other comparison groups, although the studies are generally small, and, within the studies, some children benefit while others do not. The authors found no studies that directly compared long-term outcomes of screened versus non-screened children. More research is needed to determine the benefits and harms of screening the general population.

Interagency Coordination and Implementation of the IACC Strategic Plan

AHRQ serves as a member agency on the IACC and FIWA. AHRQ-funded projects and agency activities address the following areas of the IACC Strategic Plan: Question 1 (Screening and Diagnosis), Question 4 (Treatments and Interventions), Question 5 (Services), and Question 7 (Infrastructure and Surveillance).

AHRQ ASD-Related Expenditures*, (FY 2014 - FY 2018)
FY 2014 FY 2015 FY 2016 FY 2017 FY 2018 Total

FY 2014

$763,292

FY 2015

$740,158

FY 2016

$276,836

FY 2017

$424,762

FY 2018

$146,202

Total

$2,351,250

Table 5. AHRQ ASD-Related Expenditures on research projects listed above.
*Note: AHRQ does not have a specific budget dedicated to ASD research; rather, these grants were funded through AHRQ's investigator-initiated health services research grant mechanisms and contract mechanisms.

Centers for Disease Control and Prevention

The Centers for Disease Control and Prevention (CDC) brings a unique public health perspective to the effort to fully understand 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 DD. 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.

Recognizing the importance of CDC's unique public health role, the Children's Health Act of 2000 established a scientific infrastructure at CDC for conducting population-based ASD monitoring and research. The CAA and the CARA 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 Autism CARES Act of 2014 reauthorized CDC's work for a further five years and expanded the epidemiological focus to include children and adults. Although the CAA, CARA and Autism CARES Act only provided additional legislative authority to bolster ongoing CDC autism-related activities that were already authorized, the Autism CARES Act focus on the transition from childhood to adulthood has broadened the focus of CDC's work.

While the Autism CARES Act did not provide any new appropriations for CDC's autism work, it strengthened CDC's unique surveillance and supported the continued expansion to explore autism at younger ages. The Autism CARES Act allowed CDC's public health research to expand to include more children, allowing exploration into more risk factors, and development of a pilot project to understand the transition to adolescence and adulthood. The Autism CARES Act continued support for "Learn the Signs. Act Early." and the mission of 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 Monitoring

ADDM Network

CDC's autism surveillance activities continue to advance the understanding of ASD with support from the Autism CARES Act. CDC's surveillance data provide a clear picture of the impact of autism on the nation's families and communities and are the foundation for national, state, and local policy and planning. Since 2000, the Autism and Developmental Disabilities Monitoring (ADDM) Network has conducted population-based ASD surveillance on geographic populations ranging in size from 172,335 to 407,578 8-year-old children, totaling nearly 2.5 million children. The ADDM surveillance has resulted in the most robust estimates to date of the prevalence of ASD in the United States. This information provides the foundation for research into who is likely to develop autism, why autism develops, and how to best support individuals, families, and communities affected by autism.

The ADDM Network currently conducts surveillance of ASD, and other DD, among children aged 8 years whose parents or guardians reside within in 11 geographic areas of the United States. In 2014, 2016, and 2018 CDC published updated prevalence reports. The 2018 report is the first to compare surveillance case status based on two different diagnostic systems [i.e., Diagnostic and Statistical Manual of Mental Disorders (DSM) Fourth Edition – Text Revision and DSM-5]. By applying both the previous (DSM-IV) and current (DSM-5) diagnostic criteria to generate prevalence estimates based on the different surveillance case definitions, CDC provides a direct evaluation of the impact of revised diagnostic criteria on prevalence trends. The 2014, 2016, and 2018 data inform the understanding of ASD prevalence and the characteristics of children who have ASD, and are used to monitor progress toward CDC's Healthy People 2020 objectives. A list of publications using ADDM Network data can be found in Appendix iii.


Surveillance in Younger Children: Early ADDM

In 2010, CDC also began collecting data on 4-year-old children with ASD, using the same methodology as ADDM Network surveillance, to better understand ASD in younger children. This surveillance is called the Early ADDM Network and currently includes sites in six states that are part of the ADDM Network (described above). Early ADDM surveillance of ASD among 4-year-old children helps health care providers, educators, and policy makers better understand the characteristics of young children affected by ASD and improve early identification efforts. Findings from Early ADDM Network provide valuable information about the early identification of children with ASD, age at first comprehensive evaluation, and differences in characteristics, such as intellectual disability, among 4-year-old children with ASD compared to 8-year-old children with ASD in the same communities. Data published from Early ADDM Network in 2016 suggest that progress has been made over time in identifying some children with ASD at younger ages, but with a concerning racial disparity: black preschool-aged children with ASD were less likely than white preschool-aged children with ASD to be evaluated for developmental concerns by age three years. (Appendix iii)


National Health Interview Survey

The National Health Interview Survey (NHIS) is a nationally representative household survey conducted by the National Center for Health Statistics, which monitors the health of the civilian noninstitutionalized population living in the United States on a broad range of health topics, including the presence of developmental disorders among children. The NHIS collects data continuously throughout the year with an annual release, thereby allowing for annual prevalence estimates of ASD, ID, attention-deficit/hyperactivity disorder, developmental delay, and learning disability. The NHIS is not named in nor does it receive authorization under the Autism CARES Act, but is authorized by title 42, United States Code, section 242k.

Research

The Autism CARES Act supports CDC research on risk factors that may be related to the development of ASD. CDC's Study to Explore Early Development (SEED) is the largest collaborative scientific study in the United States examining various risk factors for autism. SEED was started in 2006 and has multiple goals:

  • To understand the genetic and environmental risk factors for autism. SEED explores risk factors during pregnancy and the early years of life, including genetics, maternal infections, maternal hormonal factors (such as infertility conditions and treatments), family history of autoimmune and other immunological conditions, and obstetric risk factors.
  • To characterize the autism behavioral phenotype and associated developmental, medical, and psychiatric conditions of autism.
    • SEED's description of the full spectrum of autism can help better define autism and guide research into risk factors and interventions.
    • SEED comparison of health conditions and health-related issues (such as sleeping and eating patterns) can help improve care for children with ASD.

Between 2007 and 2016, SEED enrolled more than 6,000 children, aged 2 through 5 years, and their families in the first two phases of data collection (SEED 1 and SEED 2). The third phase of SEED, SEED 3, was funded in 2016, and enrollment and data collection are ongoing. Altogether, the six SEED 3 sites are expected to enroll over 2,100 children and their families.

CDC began publishing findings from SEED data in 2014 (See Appendix iii). These results provide valuable information about the spectrum of behaviors and characteristics of children with ASD and contribute to understanding risk factors, including fertility treatments and maternal chronic medical conditions such as diabetes and hypertension. As findings from SEED continue to be analyzed and published, SEED will continue to advance understanding of ASD etiologies and phenotypes. The expanded sample size from SEED 3 will allow SEED investigators to explore research questions in more depth, such as considering how risk factors and health conditions might vary by ASD subtypes or by different demographic groups, such as boys versus girls.

Exploring the Needs of Autism in Transition

With direction from the Autism CARES Act, SEED began exploring the transition from childhood to adulthood for people with ASD. Research on people with ASD becomes more challenging as they age from children to adults. In 2016, CDC funded a pilot extension of SEED, called SEED Teen, to explore if the unique infrastructure of SEED could reach adolescents with autism. The goals are to better understand the following:

  1. Research methods for capturing the needs of adolescents and adults
  2. How children with and without ASD develop as they become adults
  3. The health care and social service needs of adolescents with and without ASD and other DD
  4. The needs of families caring for adolescents with and without ASD and other DD.

SEED Teen will be piloted in four of the SEED 1 sites, pending Office of Management and Budget approval. Findings from the SEED Teen pilot will guide future research into this critical transition from childhood to adulthood. Results from SEED Teen will inform services and treatments for teenagers with autism and other DD and their families and add insight into similarities and differences between teens with autism and teens without autism and teen development overall.

Early Identification

CDC's "Learn the Signs. Act Early." program improves early identification through education and tools to identify developmental concerns so that children and their families receive the services and support they need as early as possible. Between May 2013 and December 2017, more than 16 million "Learn the Signs. Act Early." materials were distributed. The "Learn the Signs. Act Early." webpages have received more than 25 million page views and are utilized by health care professionals, parents, early childcare providers, partners, program champions, and other early childhood professionals.

The core activity of "Learn the Signs. Act Early." is providing information to help all families with children under the age of five years monitor their child's development. This is important because the signs of developmental delays can be subtle; the more parents are aware of and track their child's developmental milestones, the sooner they may be able to recognize a potential concern. The program provides free tools and resources for families and professionals, which have been evaluated through multiple methods. New materials shared in 2014-2018 include the following:

  • Milestone Tracker App makes it easy for parents to track, support, and celebrate their young child's development, as well as take action when there is a developmental concern. This free app offers illustrated and interactive milestone checklists, tools to discuss development and concerns with a health care provider, and reminders for appointments and developmental screening.
  • Where is Bear? A Terrific Tale for Two-Year-Olds is an award-winning book that engages children while parents learn about important child development milestones.
  • Milestones In Action is a photo and video library that provides parents and caregivers with a visual format for understanding developmental milestones. The library includes photos and videos of children showing each developmental milestone and is an excellent resource to assist parents as they complete developmental milestone checklists.
  • Watch Me! Celebrating Milestones and Sharing Concerns is a free online training course that provides early care and education providers with tools and best practices for working with families to monitor every young child's development and for helping children with developmental delays get the early support they need. The course is approved for continuing education credit.

In addition to a range of information resources, "Learn the Signs. Act Early." has worked to establish partnerships to integrate developmental monitoring into programs and systems that serve young children and their families, including public health programs and childcare programs. There continues to be 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), the Health Resources and Services Administration (HRSA) Maternal, Infant, and Early Childhood Home Visiting and Healthy Start programs, and the Administration for Children and Families (ACF) Child Care Development Fund and Early Head Start/Head Start programs.

CDC has also supported five cohorts of Act Early Ambassadors since 2011. Ambassadors are state or territorial leaders working to increase collaboration and coordination among early childhood programs and improve early identification. There were 45 ambassadors in the 2016-2018 cohort. By May 2018, the program brought additional ambassadors on board and has an ambassador in 49 states, the District of Columbia, and all but two territories. This program has proven to be very effective in putting developmental monitoring into practice. Act Early Ambassadors continue to succeed in integrating developmental monitoring resources into state or territory-wide early childhood systems, including child care, home visiting, maternal-child health programs, Help Me Grow, early intervention, and care coordination.

CDC continues to collaborate with the Association of Maternal and Child Health Programs to fund 12 small, two-year grants to states and territories to strengthen early identification systems and improve coordination of early intervention services for children with autism and other DD. CDC has actively collaborated with other federal agencies and non-federal organizations working to improve early identification and linkage to services for children with ASD and other DD. For example, CDC and HRSA continue to engage in Autism Coordination meetings. CDC worked closely with ACF and the Department of Education to lead Birth to Five: Watch Me Thrive!, a coordinated federal effort to encourage healthy child development, universal developmental and behavioral screening for children, and support for the families and providers who care for them. CDC and the American Academy of Pediatrics (AAP) are collaborating in several ways to improve early identification in pediatric health care settings including a messaging campaign, quality improvement projects, and participating in AAP's National Early Childhood Screening Initiative.

Interagency Coordination and Implementation of the IACC Strategic Plan

Understanding autism and its impact on families has been a focus of the National Centers on Birth Defects and Developmental Disabilities (NCBDDD) at CDC for the past 20 years, and it continues to be a major component of its activities. CDC participates as a member agency on the IACC and FIWA. CDC-funded projects and agency activities address the following areas of the IACC Strategic Plan: Question 1 (Screening and Diagnosis), Question 3 (Risk Factors), Question 5 (Services), and Question 7 (Infrastructure and Surveillance). Moreover, NCBDDD scientists served on three IACC Strategic Plan workgroups: Question 1 (Screening and Diagnosis), Question 3 (Risk Factors), and Question 7 (Infrastructure and Surveillance). NCBDDD science and communication investments such as the ADDM Network, SEED, and "Learn the Signs. Act Early." address each of these strategic plan objectives; numerous other science and communication products are in progress that will facilitate implementation of these and other IACC Strategic Plan goals.

Listed below are a sample of materials developed from NCBDDD programs and their relation to the IACC Strategic Plan.

Question 1: How can I recognize the signs of autism, and why is early detection so important?

  • "Learn the Signs. Act Early" milestone tracker application, "Watch Me! Training," milestone booklets and checklists, and children's books (e.g., Where is Bear? A Terrific Tale for Two Year Olds).
  • Moody, E.J., Reyes, N., Ledbetter, C., et al. (2017). Screening for autism with the SRS and SCQ: Variations across demographic, developmental and behavioral factors in preschool children. Journal of Autism and Developmental Disorders, 47(11), 550-3561.

Question 3: What causes autism, and how can disabling aspects of autism be prevented or preempted?

  • Singer, A.B., Windham, G.C., Croen, L.A., et al. (2016). Maternal exposure to occupational asthmagens during pregnancy and autism spectrum disorder in the Study to Explore Early Development. Journal of Autism and Developmental Disorders, 46(11), 3458-3468.
  • Schieve, L.A., Drews-Botsch, C., Harris, S., et al. (2017). Maternal and paternal infertility disorders and treatments and autism spectrum disorder: Findings from the Study to Explore Early Development. Journal of Autism and Developmental Disorders, 47(12), 3994-4005.

Question 7: How do we continue to build, expand, and enhance the infrastructure system to meet the needs of the autism community?

  • Christensen, D.L., Baio, J., Van Naarden Braun, K., et al. (2016). Prevalence and characteristics of autism spectrum disorder among children aged 8 years — Autism and Developmental Disabilities Monitoring Network, 11 sites, United States, 2012. Morbidity and Mortality Weekly Report Surveillance Summaries, 65(3), 1-23.
  • Baio J, Wiggins L, Christensen DL, et al. (2018). Prevalence of autism spectrum disorder among children aged 8 years — Autism and Developmental Disabilities Monitoring Network, 11 sites, United States, 2014. Morbidity and Mortality Weekly Report Surveillance Summaries, 67(No. SS-6), 1–23.
CDC ASD-Related Expenditures, (FY 2014 - FY 2017)
CDC Autism Expenditures FY 2014 FY 2015 FY 2016 FY 2017 FY 2014-FY 2017 Total

CDC Autism Expenditures

Autism Surveillance and Research*

FY 2014

$17,831,094

FY 2015

$18,884,512

FY 2016

$16,086,159

FY 2017

$17,766,661

FY 2014-FY 2017 Total

$70,568,426

CDC Autism Expenditures

Awareness of Developmental Milestones and Early Identification ("Learn the Signs. Act Early.")**

FY 2014

$2,499,907

FY 2015

$3,046,689

FY 2016

$2,568,604

FY 2017

$4,154,815*

FY 2014-FY 2017 Total

$12,270,015

CDC Autism Expenditures

Total

FY 2014

$20,331,001

FY 2015

$21,931,201

FY 2016

$18,654,763

FY 2017

$21,921,476

FY 2014-FY 2017 Total

$82,838,441

Table 6. CDC ASD-Related Expenditures, FY 2014 - FY 2017
* Autism Surveillance and Research is authorized under the Autism CARES Act. 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 Autism CARES Act.
** Awareness of Developmental Milestones and Early Identification ("Learn the Signs. Act Early.") is authorized under the Autism CARES Act. These expenditures include costs associated with CDC's autism budget lines, infant health budget line, and public health leadership 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 Autism CARES Act.

Centers for Medicare & Medicaid Services

The Centers for Medicare & Medicaid Services (CMS) is committed to strengthening and modernizing the nation's healthcare system to enhance quality, accessibility, and improved outcomes in the most cost-effective manner possible. CMS administers several programs that are available to individuals with disabilities, including those with ASD. These programs do not receive appropriations from the Autism CARES Act.

The Medicaid program is a state-federal partnership which provides health coverage to millions of Americans, including eligible low-income adults, children, pregnant women, elderly adults, and people with disabilities. States establish and administer their own Medicaid programs and determine the type, amount, duration, and scope of services within federal laws, regulations, and other requirements. CMS also provides guidelines to states about various topics. Federal law requires states to provide certain mandatory benefits and allows states the choice of covering other optional benefits. The Medicaid program is funded jointly by states and the federal government.

Medicaid's Early and Periodic Screening, Diagnostic and Treatment (EPSDT) benefit includes a comprehensive array of preventive, diagnostic, and treatment services for low-income infants, children, and adolescents under age 21. The EPSDT benefit requires screening services as well as physical, mental, vision, hearing, and dental services for such persons under age 21 that are needed to correct or ameliorate a physical or mental condition.

CMS issued an informational bulletin on July 7, 2014 that provided information on approaches available for providing services to eligible individuals with ASD under the Medicaid program. CMS has approved a number of state plan amendments that include ASD treatment services for children and/or that update their state plans with reimbursement methodologies for ASD treatment services.

Medicare is the federal health insurance program for people who are 65 or older, certain younger people with disabilities, and people with end-stage renal disease (permanent kidney failure requiring dialysis or a transplant).

The Children's Health Insurance Program (CHIP) provides health coverage to eligible children, through both Medicaid and separate CHIP programs. CHIP is administered by states, pursuant to federal requirements.

The Medicaid Health Home State Plan Option, authorized under the Affordable Care Act (section 2703), allows states to design Health Homes to provide comprehensive care coordination for Medicaid beneficiaries with chronic conditions. States receive enhanced federal funding during the first 8 quarters of implementation to support the roll out of this integrated model of care; thereafter, they will receive their regular service match rate. The new SUPPORT for Patients and Communities Act includes an amendment that would extend the enhanced match for 2 additional quarters for health home services only, under a substance-use-disorder-focused health home state plan amendment.

Health Home services include:

  1. Comprehensive Care Management
  2. Care Coordination and Health Promotion
  3. Comprehensive Transitional Care, including appropriate follow-up, from inpatient to other settings
  4. Patient and Family Support (including authorized representatives)
  5. Referral to Community and Social Support Services, if relevant
  6. Use of health information technology to link services, as feasible and appropriate

CMS issued a State Medicaid Director Letter #10-024 (Nov. 6, 2010) that indicates services must be person- and family-centered, include self-management support to individuals and their families, and provide access to individual and family support services. Individual and family supports could include providing caregiver counseling or training on: skills to help the individual improve function, obtaining information about the individual's disability or conditions, and navigating the service system. In addition, individual and family supports could include helping families identify resources to assist individuals and caregivers in acquiring, retaining, and improving self-help, socialization, and adaptive skills, and providing information and assistance in accessing services such as self-help services, peer support services, and respite services. These supports and services are available to those who meet the eligibility requirements, including individuals with ASD.

The Home and Community Based Authorities provide opportunities for adults and children to receive Home and Community Based Services (HCBS) as an alternate to institutional settings. These programs allow states to provide services to various targeted populations which include those with intellectual and/or developmental disabilities (including persons diagnosed with ASD), physical disabilities, and mental illness. States may provide HCBS to certain populations, and they manage their own waiting lists. The Center for Medicaid and CHIP Services has published information on HCBS, including guidance. CMS is available to provide technical assistance to states on the various HCBS options, including state plan amendments and HCBS waivers. Additionally, CMS has published ASD-related guidance on the implementation of the Community First Choice State Plan Option, another home and community-based services option available to states to promote community integration.

Interagency Coordination and Implementation of the IACC Strategic Plan

CMS participates as a member agency on the IACC and FIWA. While CMS is not directly involved in implementing the IACC Strategic Plan, services provided by the agency are available to individuals with ASD and their families.

Food and Drug Administration

The mission of the Food and Drug Administration (FDA) 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. 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.

On May 4, 2017, FDA held a public meeting to hear perspectives from individuals with autism, caregivers, and other patient representatives on the most significant health effects and currently available therapies for autism. FDA conducted the meeting as part of the Agency's Patient-Focused Drug Development initiative, an FDA commitment under the fifth authorization of the Prescription Drug User Fee Act (PDUFA V) to more systematically gather patients' perspectives on their condition and available therapies to treat their condition. A "Voice of the Patient" report summarizing the input provided by patients and patient representatives at this meeting was published on February 1, 2018.

Interagency Coordination and Implementation of the IACC Strategic Plan

FDA has a representative on the IACC who provides insight into drug development and regulation. While FDA is not directly involved in implementing the IACC Strategic Plan, agency activities impact individuals with ASD and their families.

Health Resources and Services Administration

The Health Resources and Services Administration (HRSA) is the primary federal agency for improving healthcare to people who are geographically isolated, economically or medically vulnerable. Under the Autism CARES Act of 2014, HRSA received funding to increase awareness of ASD and other DD; reduce barriers to screening and diagnosis; support research on evidence-based interventions; promote the development of guidelines for evidence-based practices; and train health care professionals to provide screening, diagnostic, and early, evidence-based intervention services for children with a confirmed diagnosis. To meet these objectives, HRSA funded grant programs in three areas: Training, Research, and State Systems Development. HRSA also funded two national resource centers to provide technical assistance to and promote collaboration among grantees.

Through their collective efforts, HRSA's programs are increasing access to early and appropriate developmental screening, diagnostic, and intervention services, and improving effectiveness of support services available to youth making the transition to adulthood. A description of significant progress follows.

Training Programs

HRSA supports 52 Leadership Education in Neurodevelopmental and Other Related Disabilities (LEND) training programs and 10 Developmental-Behavioral Pediatric (DBP) training programs to address the shortage of trained professionals who can provide screening, diagnostic services, and treatment for children and youth with ASD/DD. Programs are in 44 states, with partnerships that extend to the six remaining states and several U.S. territories. In 2016, HRSA expanded the LEND program from 43 to 52 grants.

Interdisciplinary clinics associated with the LEND and DBP training grants are making evidence-based interdisciplinary services available across the nation, particularly in underserved communities. The LEND programs provide interdisciplinary clinical training and leadership development to professionals from multiple disciplines who have a role in identifying, evaluating, or caring for children with ASD/DD. The DBP training programs prepare developmental-behavioral pediatric fellows with essential biopsychosocial knowledge and expertise, and for leadership roles as teachers, investigators, and clinicians. Each year, the LEND and DBP programs enroll long-term fellows to receive at least 300 hours of intensive didactic training and clinical experience working in hospitals, clinics, and community-based settings that provide diagnostic or intervention services for children and youth with ASD/DD. Collectively, the programs also provide 40–299 hours of training to others, including medical residents, to increase their understanding of ASD/DD and make them aware of emerging evidence regarding ASD evaluation and interventions.

In FY 2014 and FY 2015, the LEND and DBP programs collectively reached more than 1,300 long-term trainees, 3,500 medium-term trainees, and 15,000 short-term trainees (see Table 26). By preparing these professionals to implement recommended screening practices and use evidence-based diagnostic tools, the training programs are improving early identification of ASD/DD. The training programs also reach an extensive network of providers with continuing education, reaching 203,289 and 212,833 participants in FY 2014 and FY 2015, respectively.

Data collected from the LEND and DBP programs show the direct impact of these investments on families with a child who screens positive for ASD. The programs provided interdisciplinary diagnostic services for more than 108,000 infants and children in FY 2014 and more than 112,000 in FY 2015. By continuing to meet the growing demand for services, the programs are reducing wait times for diagnostic evaluation and entry into intervention services. The training programs are helping to address disparities in early identification of ASD by expanding their reach to underserved populations through innovative mechanisms, including telehealth and tele-consultation.

Research Programs

HRSA's research programs support national research networks, field-initiated research projects, secondary data analyses and single investigator innovation projects to advance the evidence base on effective interventions to improve the health and well-being of children and adolescents with ASD and other DD. These programs address the needs of underserved populations, such as low-income, racial/ethnic minorities, individuals who have limited access to services, and other underserved populations. The research programs promote the development of evidence-based guidelines for intervention, validate tools for screening and intervention, and disseminate information to health professionals and the public.

The Autism Intervention Research Network on Physical Health (AIR-P) provides national leadership in research designed to improve the physical health and wellbeing of children and adolescents with ASD/DD. From FY 2014-2018, AIR-P had 26 active studies, published two empirically based guidelines for the management of anxiety and treatment of irritability and problem behaviors (published in a 2016 Pediatrics Supplement), and developed 11 toolkits for parents and providers on topics such as preparing for and completing an electroencephalogram (EEG), melatonin and sleep, and puberty and adolescence. AIR-P research studies 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. AIR-P is also investigating how a collaborative telehealth intervention using Extension for Community Healthcare Outcomes Autism technology may increase provider knowledge, improve clinical practice, and enhance the self-efficacy of providers in their care of children with ASD. See Tables 27-28 for a complete listing of AIR-P research studies and products.

Autism Intervention Research Network on Behavioral Health (AIR-B) seeks to advance evidence-based behavioral treatments for children with ASD, particularly those in underserved and minority communities. AIR-B has forged strong partnerships with school districts to conduct community participatory research with teachers, paraprofessionals, parents, and administrators with community providers to implement evidence-based interventions effectively and sustainably in real-world settings. AIR-B completed six studies and has two RCTs in progress. AIR-B developed three tools and one practical guideline: Schedules, Tools, and Activities for Transitions in the Daily Routine (STAT) Manual, AIR-B Social Dynamics of Intervention (SoDI), the AIR-B PARTNER Tool, and a guideline for facilitating more successful transitions within the daily routine for children with ASD.

One intervention, Remaking Recess, was effective in increasing social engagement between children (ages 5-11 years) with autism and their typical peers during the less structured times of the school day. Tables 29-30 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 ASD/DD. One study, for example, is assessing the ability of a family navigator to improve access to ASD diagnostic and treatment services and outcomes. Ten active DBPNet studies are listed in Table 31. DBPNet developed consensus research priorities for the field of developmental-behavioral pediatrics and completed a study that assessed research training methods and outcomes at accredited Developmental and Behavioral Pediatrics (DBP) fellowship training programs. DBPNet also provides the mentoring environment in which a new generation of developmental behavioral pediatric researchers are trained.

The Maternal and Child Health (MCH) Research Network on Promoting Healthy Weight (HW-RN) among Children with ASD/DD is an interdisciplinary, multi-site research forum for scientific collaboration and infrastructure building, providing national leadership in research that furthers scientific understanding of obesity risk factors and facilitates the development of interventions designed to improve the health and well-being of children with ASD and other DD. The HW-RN has implemented 17 research studies on topics including nutrition, physical activity, and weight management in this subpopulation. A total of 6 toolkits are under development or in the pilot phase and one clinical guideline is underway (see Tables 32-33). HW-RN provided the first nationally representative estimates of obesity in children and adults with ASD/DD, along with obesity-related risk factors for this population. The HW-RN also published a groundbreaking study that found that although there has been an age-related decline in obesity prevalence in the typically developing population, no such decline has occurred among children with ASD.

MCH Health Care Transitions Research Network (HCT-RN) for Youth and Young Adults with Autism Spectrum Disorders (ASD) was funded from 2014 through August 2017, as an interdisciplinary, multi-center research forum for scientific collaboration and infrastructure-building, with a focus on research designed to improve healthcare transitions and promote an optimal transition to adulthood among youth and young adults with ASD, including optimal physical, psychosocial, educational, and vocational outcomes. HCT-RN addressed the critical lack of research on life course influences at the person, family, community, health system, and policy levels prior to, during, and following the transition of youth and young adults with ASD from pediatric to adult health care settings. HCT-RN had 11 active research studies, finalized five tools, and published five clinical guidelines for transitioning youth, parents/caregivers, and providers to facilitate the transition from pediatric to adult health care. These research studies, tools, and toolkits are listed in Tables 34-35. In addition, the HCT-RN published three National Autism Indicators Reports, which continue to draw attention to the issue of transition to adulthood and are a resource for researchers, policymakers, and the public.

The Autism Intervention Research Program supports multi-year applied research and secondary data analysis research on evidence-based practices for interventions to improve the health and well-being of children and adolescents with ASD/DD. This program consists of the Autism Field Initiated and Innovative Research Studies (Autism FIRST) program and the Autism Secondary Data Analysis Research (Autism SDAR) program. The 17 currently-funded research projects are addressing several high-priority topics pertaining to ASD. Several studies focused on disparities in access to care, quality of care, and health care utilization. Some studies are testing parent- or teacher-mediated interventions, or increasing the capacity of families and schools to help improve developmental outcomes for children with ASD/DD. Other studies are assessing the effectiveness of medical or behavioral interventions and practices intended to improve outcomes for children with ASD and support their families. Tables 36-37 list both ongoing and completed studies.

The Autism Single Investigator Innovation Program was established in 2017 and supports two distinct projects: The Autism Longitudinal Data Project (ALDP) and the Autism Transitions Research Project (ATRP). ALDP supports the implementation and completion of research studies that examine longitudinal data on ASD and other DD, to study risk factors for these conditions, the effects of various interventions, and trajectories of child development over the life course. The ALDP will provide leadership and education in studies of ASD intervention using longitudinal methods which address the following: physical and behavioral aspects of development and assessment at different stages of life course development, underserved populations, including minority, urban or rural populations, early life origins and onset, maternal and perinatal origins, high-risk populations, development and course of condition, and primary prevention (See Table 38). The ATRP supports the implementation and completion of programmatic research studies that examine factors associated with healthy life transitions among adolescents and young adults with ASD who are transitioning to adulthood. ATRP's goals are to: 1) advance the evidence base available to researchers, providers, policy makers, educators, adolescents and young adults with ASD and their families, and the public regarding factors associated with healthy life (physical, social, mental health, and educational/occupational) outcomes among this population; 2) address the critical need that exists for ASD transitions research that targets the social environment and not just the individual; and 3) provide national leadership and education in research on healthy transitions to adulthood for this population. Findings from the programmatic series of three ATRP studies will advance the evidence base on factors associated with healthy life outcomes among adolescents and young adults with ASD in order to improve transition care and services for this population (See Table 39).

State Implementation, Planning, and Innovation in Care Integration

Between 2013 and 2014, MCHB awarded grants to 13 states with the goal of improving access to comprehensive, coordinated services, including health care, education, and social services, for children and youth with ASD/DD. Four states received grants to develop strategic plans for improving the state's system of care for children with ASD/DD, and nine states with existing plans received grants for implementation. MCHB awarded grants to four states in 2016 under a new program title, Innovation in Care Integration for Children and Youth with Autism Spectrum Disorders and Other Developmental Disabilities. The Innovation grants aim to promote integration of services for children and youth with ASD/DD across health care, education, and social service systems and improve access to appropriate screening, referral, diagnosis, care coordination, and intervention services. Furthermore, to facilitate peer learning and the widespread implementation of effective practices, 2016 grantees formed a learning community through which participants could share their successes and challenges, engage in collaborative problem-solving, and test rapid-cycle improvement strategies.

Data provided by state grantees indicate measurable improvements in screening and referral practices. State grantee activities included forming quality improvement learning collaboratives with pediatric practices to increase screening rates and working with communities to strengthen infrastructure and increase the number of professionals using reliable, valid tools to identify children with ASD. Table 40 lists the state grantees.

Additional Investments

HRSA supports two additional investments through the Title V Maternal and Child Health Services Block Grant Program (Section 501(a) of Title V of the Social Security Act). This program intends "to improve the health of all mothers and children consistent with the applicable health status goals and national health objectives…." Administered through well-established federal/state partnerships, states have broad discretion in implementing programs that meet their specific priority needs. The grantees are public health programs that are responsible for assessing needs in their state for the entire MCH population and prioritize programs to meet those needs. States and jurisdictions use their Title V funds to design and implement a wide range of MCH and Children with Special Health Care Needs (CSHCN) activities, which may include children with ASD.

The National Survey of Children's Health (NSCH), funded and directed by HRSA, provides national and state level estimates of key measures of child health and well-being of American children 0-17 years old. Information is collected annually on factors including access to and utilization of health care, receipt of care in a medical home, family interactions, parental health, school and after-school experiences, and neighborhood characteristics. The NSCH includes questions on the prevalence of ASD, as well as age at diagnosis, type of provider who gave the diagnosis, parent assessment of condition severity, and types of ASD treatment received. The NSCH is supported through the Special Projects of Regional and National Significance (SPRANS) of Title V Maternal and Child Health Services Block Grant Program (Section 501(a) of Title V of the Social Security Act).

Interagency Coordination and Implementation of IACC Strategic Plan

HRSA participates as a member agency on the IACC and FIWA. In addition, HRSA MCHB utilizes the IACC Strategic Plan to inform the development of its research funding opportunities, promoting the support of autism research investments that address the IACC Strategic Plan while also addressing the authorizing legislation and HRSA's mission. Research and training programs together are addressing all seven of the IACC Strategic Plan Questions. One particular area of focus is research to advance the evidence base on the effectiveness of clinical and behavioral interventions to improve the physical and behavioral health of children and adolescents with ASD (IACC Strategic Plan Question 4). HRSA research programs are also working to improve early identification of ASD and other DD, to reduce disparities in early detection and access to services, and to improve outcomes for underserved populations (IACC Strategic Plan Question 1). Research and Training programs are expanding and enhancing the research and services workforce, accelerating the pipeline from research to practice, and developing an interdisciplinary workforce with the clinical expertise and leadership skills to provide the best possible services and supports for children with ASD and other DD and their families (IACC Strategic Plan Question 7). These programs are also advancing the knowledge base and implementing approaches to ensure successful transition of youth with ASD into adulthood (IACC Strategic Plan Question 6). HRSA investments are supporting the optimal health and well-being of children and adolescents with ASD and other DD from the earliest stages of identification, effective treatment and comprehensive coordinated care, and support for transition and care into adulthood.

HRSA ASD-Related Expenditures, FY 2014 - FY 2017
Program Title FY 2014 FY 2015 FY 2016 FY 2017
Training Programs

Program Title

Leadership Education in Neurodevelopmental Disabilities (LEND) training programs (T73)

FY 2014

$27,938,271

FY 2015

$28,004,199

FY 2016

$31,079,181

FY 2017

$31,655,250

Program Title

Developmental Behavioral Pediatrics (DBP) training programs (T77)

FY 2014

$1,903,362

FY 2015

$1,833,323

FY 2016

$1,948,555

FY 2017

$1,848,853

Program Title

Interdisciplinary Resource Center (UA5)

FY 2014

$659,182

FY 2015

$666,201

FY 2016

$627,141

FY 2017

$621,000
Research Programs

Program Title

MCH Autism Intervention Research Networks (Physical Health, Behavioral Health and Developmental Behavioral Pediatrics) (UA3; UJ2 FY 2017)

FY 2014

$4,893,750

FY 2015

$5,774,704

FY 2016

$5,824,895

FY 2017

$6,524,914

Program Title

MCH Autism Intervention Research Program (R40; Replaced by R41 FY 2017)

FY 2014

$4,587,081

FY 2015

$3,782,969

FY 2016

$2,577,301

FY 2017

$598,740
State Implementation Programs

Program Title

State Implementation Grants and State Planning Grants (H6M)

FY 2014

$2,956,984

FY 2015

$2,916,786

FY 2016

$1,680,000

FY 2017

$1,680,000

Program Title

Technical Assistance Center (U01)

FY 2014

$272,103

FY 2015

$275,000

FY 2016

$455,000

FY 2017

$455,000

Program Title

Total

FY 2014

$43,210,733

FY 2015

$43,253,182

FY 2016

$44,192,073

FY 2017

$43,383,757

Table 7. HRSA Autism CARES Act Funding, FY 2014 - FY 2017


Indian Health Service

The Indian Health Service (IHS) is responsible for providing federal health services to American Indians and Alaska Natives. The provision of health services to members of federally-recognized Tribes grew out of the special government-to-government relationship between the federal government and Indian Tribes. This relationship, established in 1787, is based on Article I, Section 8 of the Constitution, and has been given form and substance by numerous treaties, laws, Supreme Court decisions, and Executive Orders. The IHS is the principal federal healthcare provider and health advocate for Indian people, and its goal is to raise their health status to the highest possible level. The IHS provides a comprehensive health service delivery system for approximately 2.2 million American Indians and Alaska Natives who belong to 573 federally recognized tribes.

The IHS does not have any programs or funding specifically for individuals on the autism spectrum. However, as a federal health care organization, IHS does provide services to American Indian/Alaska Natives (AI/AN) patients with ASD. As part of the IHS mission to raise the physical, mental, social, and spiritual health of American Indians and Alaska Natives to the highest level, IHS is committed to providing education, training, consultation, and resources to clinicians treating patients with ASD through the IHS Indian Children's Program (ICP). The ICP has historically been a regionally-based program that provided consultative services to AI/AN youth diagnosed with neurodevelopmental disorders, including ASD. In 2016, the ICP transitioned to the IHS Telebehavioral Health Center of Excellence (THBCE) to become a national program. The TBHCE currently provides training and support to clinicians regarding behavioral health, family, and social issues facing AI/AN youth diagnosed neurodevelopmental disorders, including ASD. These services are available to all IHS, Tribal, and urban Indian providers and include no-cost continuing education credits. From FY 2014 through FY 2017, 76 webinars on ASD and autism-related topics were provided, with a total of 2,216 clinicians trained.

To complement these training opportunities and to further support providers, the ICP also provides twice monthly, provider-to-provider consultation clinics that address ASD, Fetal Alcohol Spectrum Disorders, and other neurodevelopmental issues experienced by AI/AN youth.

Interagency Coordination and Implementation of the IACC Strategic Plan

In addition to the activities described above, IHS participates as a member agency on the IACC and FIWA. While IHS is not directly involved in implementing the IACC Strategic Plan, services provided by the agency are available to individuals with autism and their families.

IHS ASD-Related Expenditures, (FY 2014 - FY 2017)
FY 2014 FY 2015 FY 2016 FY 2017

ASD-focused spending

ASD-focused spending

FY 2014

$10,500

FY 2015

$16,500

FY 2016

$52,500

FY 2017

$36,000

Table 8. IHS Funding for ASD-related Activities, FY 2014 - FY 2017 *
*The amounts reflected do not account for direct health services for the treatment and management of autism.

National Institutes of Health

The National Institutes of Health (NIH) is the nation's medical research agency. NIH makes coordinated efforts to invest in a wide range of ASD research.

NIH Research Programs

  • Autism Centers of Excellence (ACE): NIH created the ACE Program in 2007 with a series of five-year awards to launch an intense and coordinated research program into the causes of ASD and to find new treatments. The second iteration of the ACE Program launched in FY 2012. In 2017, new ACE grants were awarded where ASD research efforts focused on studying infant social interactions to identify signs of ASD in early infancy, evaluating if early developmental screening lowers the average age of ASD diagnosis and leads to earlier interventions and improved outcomes, examining how ADHD may influence the diagnosis and treatment of ASD, investigating how ASD differs among girls and boys particularly during the transition from adolescence into adulthood, and developing interventions appropriate for different subtypes of children with ASD. The National Institute of Mental Health (NIMH), the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), the National Institute on Deafness and Other Communication Disorders (NIDCD), the National Institute of Neurological Disorders and Stroke (NINDS), and the National Institute of Environmental Health Sciences (NIEHS) support the ACE Program.
  • The Children's Environmental Health and Disease Prevention Research Centers: The Children's Environmental Health and Disease Prevention Research Centers is a long-standing program jointly supported by NIEHS and the Environmental Protection Agency (EPA) to fund research on understanding how genetic and environmental factors interact to influence children's health and to engage with communities and healthcare providers to improve dissemination and translation of research findings. The University of California (UC) Davis Center for Children's Environmental Health (CCEH), which focuses its research on environmental risks for autism, is one of the few NIEHS/EPA Children's Environmental Health and Disease Prevention Research Centers that has been continuously funded. For more than a decade, the UC Davis CCEH has supported interdisciplinary research to understand the risk of autism from environmental exposures and underlying biologic mechanisms that confer these risks as well as helped to prepare the next generation of autism researchers. Recent research has focused on understanding the influence of environmental exposures (including air pollution and pesticides) on metabolic, immune, and epigenetic risks for autism diagnosis. Several publications have resulted from CCEH supported research (Appendix v). Work under the UC Davis Center ends in May 2019 and future funding for Children's Environmental Health and Disease Prevention Research Centers remains uncertain.
  • National Database for Autism Research (NDAR): Data from over 115,000 consenting, de-identified research participants are available for secondary analysis by other qualified researchers. All data within NDAR are harmonized (e.g., the same names for each piece of data collected are used) and validated (e.g., values are consistent with other projects) to a community-established common data definition. At the NIH, most newly awarded human-subject grants related to ASD are or will be contributing raw data to NDAR (PMID: 26446859), and are expected to share analyzed data specific to published results using NDAR's Study feature. Furthermore, the NDAR platform now supports the sharing of human subjects research data in most mental health and certain substance use initiatives.
  • NIH NeuroBioBank (NBB): Supported by NIMH, NINDS, and NICHD, the NBB is a network of Brain and Tissue Banks which aim to systematically collect, store, and distribute post-mortem brain and other tissues for research to improve understanding, care, and treatment of individuals with developmental, neurological, and movement disorders. Each of the six sites collects approximately 100 brains/year. NIH coordinates sharing post-mortem brain tissue with the neuroscience community.
  • Consortium on Biomarker and Outcome Measures of Social Impairment for Use in Clinical Trials in ASD: NIMH, NICHD, NINDS, the Foundation for the NIH, and the Simons Foundation Autism Research Initiative, funded a four-year, multisite project to test several EEG, eye tracking and lab-based measures to determine if they can be used to identify subtypes of ASD, or serve as early indicators of treatment response, and improve clinical research tools for studying ASD. The project will receive a total of $28 million to test and refine clinical measures of social impairment in ASD in order to better evaluate potential behavioral and drug therapies. The researchers will conduct a multi-site study of preschool (4-5 years) and school-aged (6-11 years) children, both with and without ASD, over the course of several months. Research sites include Yale University, Duke University, the University of California at Los Angeles, the University of Washington, and Boston Children's Hospital.
  • Services Research for ASD across the Lifespan (ServASD): Since 2014, NIMH has issued a series of Funding Opportunity Announcements (FOAs) based on the objectives underpinning the 2012 and 2013 editions of the IACC Strategic Plan. The Services Research for Autism Spectrum Disorder across the Lifespan (ServASD) FOAs were framed to address the seven Question areas from these two Strategic Plans and focused on stimulating new research to develop and test the effectiveness of service system interventions to improve functional and health outcomes for people with ASD at three key life stages: early childhood, transition from youth to adulthood, and adulthood. In 2014, NIMH funded a three-component initiative that resulted in funding 12 studies:
    • Research on Early Identification and Linkage to Services for ASD
    • Pilot Research on Services for Transition-Age Youth
    • Pilot Studies of Services Strategies for Adults with ASD
    In an effort to further expand the science base for services research addressing transition-age youth and adults with ASD, two FOAs (Pilot Research on Services for Transition-Age Youth and Pilot Studies of Services Strategies for Adults with ASD) were re-issued, resulting in funding for 5 additional studies.
  • Biomarkers to Enable Therapeutics Development in Neurodevelopmental Disorders: NINDS – in collaboration with NICHD, NIMH, the National Center for Advancing Translational Sciences (NCATS), and several non-profit organizations – sponsored a workshop on biomarker development for neurodevelopmental disorders strongly associated with ASD and intellectual disability (ID) in December 2017. Workshop discussions focused on physiological and functional biomarkers that can enable clinical trial readiness and success, with participants from basic, translational and clinical research; industry; the FDA; and funding organizations.
  • Clinical trials in ASD-related Disorders
    • NINDS is supporting two new clinical trials on ASD-related conditions that will be informative to the broader ASD research and patient community.
      • The NINDS PREVeNT trial (NCT02849457) is a study that builds on recent work showing EEG biomarkers can predict seizure activity prior to onset in infants with Tuberous Sclerosis Complex (TSC). This trial will test whether presymptomatic treatment with anti-seizure medication prevents development of epilepsy in infants with Tuberous Sclerosis Complex and if treatment improves cognitive and behavioral outcomes or reduces risk of developing ASD.
      • NINDS, NICHD, and NIDCD will test whether an mGluR5 inhibitor, in combination with an intensive language intervention, can boost language learning in children with Fragile X Syndrome (FXS) as part of the NeuroNext clinical trial network. This study (NCT02920892) will also identify biomarkers that are correlated to developmental outcome measures, and assess whether the intervention alters developmental trajectory of children with FXS including whether they develop autism.
  • Developmental Synaptopathies Consortium: NINDS, NICHD, and NIMH support the Developmental Synaptopathies Consortium, which includes teams of researchers conducting mechanistic studies of genetic conditions related to ASD and ID, to uncover shared molecular pathways and potential new therapeutic targets. Many genes have been implicated in a spectrum of rare disorders associated with autism, and they appear to converge on a few common pathways. Deeper understanding of the shared pathophysiology may elucidate mechanisms of other causes of ASD, and pave the way for shared treatment possibilities. This consortium has projects related to three well-established genetic syndromes that are associated with high penetrance for ASD: TSC1/2, PTEN, and SHANK3 mutations.
    • Advances from this consortium include:
      • Utility of the Autism Observation Scale for Infants in Early Identification of Autism in Tuberous Sclerosis Complex: In this study, investigators used the Autism Observation Scale for Infants (AOSI), a semi-structured assessment designed as a research tool to evaluate ASD-related areas of concern, to identify early predictors of autism risk in children with tuberous sclerosis complex. At 12 months of age, an AOSI total score cutoff of 13 could predict ASD with the Autism Diagnostic Observation Schedule-2 (ADOS-2) at 24 months (specificity of 0.89) AOSI total score was also associated with a diagnosis with Autism Diagnostic Interview-Revised (ADI-R) at 24 months. This study demonstrates the utility of the AOSI as a tool to identify TSC infants most at risk for developing autism and in need of early intervention. (PMID: 28844798)
      • Development of an Objective Autism Risk Index Using Remote Eye Tracking: In this study, investigators created an objective eye-tracking risk index for ASD by using remote eye tracking among children with or without ASD diagnosis. In initial and replication samples, the autism risk index had high diagnostic accuracy and was strongly associated with ADOS-2 severity scores. This eye-tracking based risk index may provide a useful objective measure of autism in children at risk and could inform clinical diagnosis and intervention effects (PMID: 27015721).

Other Relevant Research Advances

  • Molecular Mechanisms of UBE3A Genetic Contributions to Autism: NINDS-funded investigators explored potential mechanisms by which elevation of UBE3A activity, a gene implicated in both autism and Angelman syndrome, increases risk for autism. The researchers discovered that an autism-linked mutation in an upstream regulation site, T485, leads to abnormal elevation of UBE3A and impaired synapse formation. Further, the researchers demonstrated that targeting upstream regulators of this pathway with pharmacological interventions could reduce UBE3A activity, suggesting potential therapeutic strategies (PMID: 26255772).
  • Autism Birth Cohort study: NINDS supported the Autism Birth Cohort study, which is nested within the Norwegian Mother and Child Cohort Study, to search for factors associated with autism risk. Use of folic acid supplementation around conception was associated with a lower risk of autism (PMID: 23403681), and paternal obesity was found to be an independent risk factor for autism in a father's child (PMID: 24709932).
  • Identifying Chemicals that Cause Similar RNA Expression in Autism, Aging, and Brain Disorders: NICHD-, NIEHS-, and NINDS-supported investigators found that mouse brain cells exposed to a pesticide and some fungicides showed patterns of RNA that are similar to RNA expressed in brain cells from humans with autism, advanced age, or neurodegenerative disorders. Cells exposed to these chemicals showed decreased effects after treatment with a compound that can help protect microtubules and other cellular functions (PMID: 27029645).
  • Genes in Somatosensory Neurons Underlie Tactile and Behavioral Deficits in ASD: Investigators supported by NINDS and the National Institute on Dental and Craniofacial Research (NIDCR) found that deletion of the genes Mecp2 or Gabrb3 in peripheral somatosensory neurons in mice caused synaptic and mechanosensory dysfunction, tactile impairments, and deficits in social interaction and anxiety-like behaviors. Restoring Mecp2 expression rescued the deficits. These data indicate a role for mechanosensory processing dysfunction in behavioral impairments in mouse models of ASD (PMID: 27293187).
  • Mutations of the SHANK3 gene are associated with ASD: NINDS- and NIMH-supported researchers found that SHANK3 mutations were associated with impaired Ih (hyperpolarization-activated cation) channels in human neurons. The mechanism by which SHANK3 mutations cause synaptic dysfunction may contribute to ASD and related disorders (PMID: 26966193).
  • ASD in Adulthood: NIMH funded a longitudinal study of brain and cognitive changes during mid-to-late adult life in individuals with ASD (R01MH103494). NIMH also funded a randomized control trial in adults with ASD examining the effects of a cognitive rehabilitation intervention that targets social and cognitive functioning and integrates computer-based training with a group-based curriculum (R01MH106450). Results from this study are expected sometime in 2021.

NIH Autism Funding Opportunity Announcements (FOAs)

Interagency Coordination and Implementation of the IACC Strategic Plan

NIH-funded research addresses all 7 Question areas of the IACC Strategic Plan. The NIH Institutes and Centers (ICs) engaged in funding research on ASD make ongoing efforts to address objectives of the Strategic Plan that align with the research priorities as defined by their respective ICs. These efforts are facilitated through regular monthly meetings of the NIH Autism Coordinating Committee (ACC), an internal committee that communicates information about research initiatives and results. The NIH ICs represented on the ACC include NICHD, NIDCD, NIEHS, NIMH, and NINDS. OARC and the NIMH National Database for Autism Research (NDAR) office also participate in NIH ACC meetings.

The NIH Director, as well as the directors of NICHD, NIDCD, NIEHS, NIMH, and NINDS, are all members of the IACC. NIH also participates as a member agency of the FIWA.

NIH ASD-Related Expenditures by Institute/Center (FY 2014 - FY 2018)
Participating Institutes/Centers FY 2014 Actual FY 2015 Actual FY 2016 Actual FY 2017 Actual FY 2018 Estimate*

Participating Institutes/Centers

National Center for Advancing Translational Sciences (NCATS)

FY 2014 Actual

77

FY 2015 Actual

78

FY 2016 Actual

301

FY 2017 Actual

263

FY 2018 Estimate*

–

Participating Institutes/Centers

National Center for Complementary and Integrative Health (NCCIH)

FY 2014 Actual

–

FY 2015 Actual

–

FY 2016 Actual

5

FY 2017 Actual

327

FY 2018 Estimate*

–

Participating Institutes/Centers

National Cancer Institute (NCI)

FY 2014 Actual

209

FY 2015 Actual

270

FY 2016 Actual

321

FY 2017 Actual

321

FY 2018 Estimate*

–

Participating Institutes/Centers

National Eye Institute (NEI)

FY 2014 Actual

52

FY 2015 Actual

452

FY 2016 Actual

396

FY 2017 Actual

403

FY 2018 Estimate*

–

Participating Institutes/Centers

National Human Genome Research Institute (NHGRI)

FY 2014 Actual

809

FY 2015 Actual

1,654

FY 2016 Actual

1,952

FY 2017 Actual

1,044

FY 2018 Estimate*

–

Participating Institutes/Centers

National Heart, Lung, and Blood Institute (NHLBI)

FY 2014 Actual

–

FY 2015 Actual

418

FY 2016 Actual

418

FY 2017 Actual

418

FY 2018 Estimate*

–

Participating Institutes/Centers

National Institute of Biomedical Imaging and Bioengineering (NIBIB)

FY 2014 Actual

–

FY 2015 Actual

131

FY 2016 Actual

–

FY 2017 Actual

–

FY 2018 Estimate*

–

Participating Institutes/Centers

Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)

FY 2014 Actual

31,345

FY 2015 Actual

31,523

FY 2016 Actual

35,487

FY 2017 Actual

38,506

FY 2018 Estimate*

–

Participating Institutes/Centers

National Institute on Drug Abuse (NIDA)

FY 2014 Actual

–

FY 2015 Actual

–

FY 2016 Actual

–

FY 2017 Actual

226

FY 2018 Estimate*

–

Participating Institutes/Centers

National Institute on Deafness and Other Communication Disorders (NIDCD)

FY 2014 Actual

6,844

FY 2015 Actual

6,594

FY 2016 Actual

7,887

FY 2017 Actual

7,384

FY 2018 Estimate*

–

Participating Institutes/Centers

National Institute of Dental and Craniofacial Research (NIDCR)

FY 2014 Actual

719

FY 2015 Actual

633

FY 2016 Actual

618

FY 2017 Actual

622

FY 2018 Estimate*

–

Participating Institutes/Centers

National Institute of Environmental Health Sciences (NIEHS)

FY 2014 Actual

8,912

FY 2015 Actual

12,111

FY 2016 Actual

14,186

FY 2017 Actual

15,717

FY 2018 Estimate*

–

Participating Institutes/Centers

National Institute of General Medical Sciences (NIGMS)

FY 2014 Actual

2,789

FY 2015 Actual

3,006

FY 2016 Actual

2,178

FY 2017 Actual

3,659

FY 2018 Estimate*

–

Participating Institutes/Centers

National Institute of Mental Health (NIMH)

FY 2014 Actual

113,877

FY 2015 Actual

127,634

FY 2016 Actual

135,365

FY 2017 Actual

140,746

FY 2018 Estimate*

–

Participating Institutes/Centers

National Institute of Neurological Disorders and Stroke (NINDS)

FY 2014 Actual

20,819

FY 2015 Actual

21,276

FY 2016 Actual

25,133

FY 2017 Actual

23,974

FY 2018 Estimate*

–

Participating Institutes/Centers

Office of the Director (OD)

FY 2014 Actual

534

FY 2015 Actual

1,454

FY 2016 Actual

7,312

FY 2017 Actual

10,587

FY 2018 Estimate*

–

Participating Institutes/Centers

NIH Roadmap for Medical Research (Roadmap)

FY 2014 Actual

1,105

FY 2015 Actual

391

FY 2016 Actual

157

FY 2017 Actual

374

FY 2018 Estimate*

–

Participating Institutes/Centers

National Library of Medicine (NLM)

FY 2014 Actual

48

FY 2015 Actual

48

FY 2016 Actual

–

FY 2017 Actual

–

FY 2018 Estimate*

–

Participating Institutes/Centers

Total NIH

FY 2014 Actual

188,138

FY 2015 Actual

207,672

FY 2016 Actual

231,717

FY 2017 Actual

244,571

FY 2018 Estimate*

260,000

Table 9. National Institutes of Health Autism Funding, FY 2014 - FY 2018 (Thousands of Dollars) Table shows all NIH expenditures on ASD, as reported through the NIH Research Portfolio Online Reporting Tool (NIH RePORT) for Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC) (Total NIH FY 2018 data are an estimate based on the FY 2017 actual)
*FY 2018 data have not been finalized in RePORT RCDC and are estimated.

NIH Autism Centers of Excellence (ACE) Program Expenditures
Institutes FY 2014 FY 2015 FY 2016 FY 2017

Institutes

National Institute on Deafness and Other Communication Disorders (NIDCD)

FY 2014

1,818

FY 2015

1,788

FY 2016

1,781

FY 2017

150

Institutes

Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)

FY 2014

10,409

FY 2015

8,304

FY 2016

9,580

FY 2017

10,409

Institutes

National Institute of Mental Health (NIMH)

FY 2014

9,907

FY 2015

9,625

FY 2016

7,103

FY 2017

14,247

Institutes

National Institute of Neurological Disorders and Stroke (NINDS)

FY 2014

3,464

FY 2015

1,361

FY 2016

2,271

FY 2017

933

Institutes

National Institute of Environmental Health Sciences (NIEHS)

FY 2014

200

FY 2015

200

FY 2016

200

FY 2017

250

Institutes

Total NIH

FY 2014

25,798

FY 2015

21,278

FY 2016

20,935

FY 2017

25,990

Table 10. Table 10. NIH funding (Thousands of Dollars) of the Autism Centers of Excellence (ACE) program, which includes centers (P50s) and cooperative agreements (U01).

Substance Abuse And Mental Health Services Administration

The Substance Abuse and Mental Health Services Administration (SAMHSA) leads public health efforts to advance the behavioral health of the nation. SAMHSA's mission is to reduce the impact of substance abuse and mental illness on America's communities.

Since 1993, SAMHSA has implemented the Congressionally-mandated Comprehensive Community Mental Health Services for Children with Serious Emotional Disturbances Program, also known as the Children's Mental Health Initiative (CMHI). CMHI serves children and young adults (birth through 21) who are at risk for or meet criteria for serious emotional disturbance. Approximately 3.7% of this population also has a comorbid pervasive developmental disorder (PDD), which may include ASD.

This initiative provides funds to public entities to create "systems of care," which are defined as a spectrum of effective, community-based services and supports for children and youth with or at risk for mental health or other challenges and their families, that is organized into a coordinated network, builds meaningful partnerships with families and youth, and addresses their cultural and linguistic needs, in order to help them to function better at home, in school, in the community, and throughout life.

From FY 2011 to FY 2015, SAMHSA funded 127 CMHI grants to support expansion of systems of care. These included 50 one-year Expansion Planning grants, as well as 77 four-year systems of care Expansion and Sustainability grants to stimulate the widescale adoption of the system of care approach. These grants promote the expansion of system of care services and supports, including infrastructure development and collaboration and partnership between child-serving systems (e.g., child welfare, education, juvenile justice, primary care and substance abuse services and systems, and strategic financial planning), so that the system of care framework can be brought to scale and sustained after grant funding has ended. The most recent Report to Congress on this program details outcomes from a national evaluation of nine demonstration grants and presents information on Expansion and Sustainability grants.

Interagency Coordination and Implementation of the IACC Strategic Plan

SAMHSA participates on the FIWA. While SAMHSA is not directly involved in implementing the IACC Strategic Plan, services provided by the agency are available to individuals with autism and their families.

Department of Education

The mission of the U.S. Department of Education (ED) is to promote student achievement and preparation for global competitiveness by fostering educational excellence and ensuring equal access. ED supports programs to develop and implement evidence-based practices for services to youths and postsecondary students, as well as programs for individuals with disabilities who have graduated from high school or a postsecondary institution and are seeking vocational rehabilitation services. Although the Department of Education does not receive appropriations under the Autism CARES Act, ED does support ASD-related services, supports, and research through programs administered by ED's Institute of Education Sciences, the Office of Special Education and Rehabilitative Services, and the Office of Postsecondary Education. An overview of these programs is provided below.

Institute of Education Sciences

The Institute of Education Sciences is the independent research, evaluation, and data collection arm of the Department of Education. IES's mission is to provide scientific evidence on which to ground education practice and policy, and to share this information in formats that are useful and accessible to educators, parents, policymakers, researchers, and the public. Each of the four IES Centers supports work related to ASD. The programs and projects administered by the four IES Centers are described below.

National Center for Special Education Research

The National Center for Special Education Research (NCSER) funds research on ASD under several of its standing research topics. The Autism Spectrum Disorders topic supports research on comprehensive school-based interventions (i.e., interventions that directly target, in a coordinated fashion, multiple outcomes) intended to improve outcomes for students identified with ASD or at risk for ASD. Additional grant programs within NCSER support research on ASD targeted toward a single outcome (e.g., social outcomes under the Social and Behavioral Outcomes to Support Learning topic) or improving developmental outcomes such as communication skills for infants, toddlers, and preschoolers at risk for or identified with ASD under the Early Intervention and Early Learning in Special Education topic. NCSER's Transition Outcomes for Secondary Students with Disabilities topic includes projects that focus on the improvement of transition outcomes of secondary students with disabilities, many with ASD. In 2012, NCSER funded the Center on Secondary Education for Students with Autism Spectrum Disorders (CSESA) to develop and test a comprehensive, school-based intervention to improve the cognitive, communicative, academic, social, behavioral, functional, and transition outcomes of secondary students with ASD. CSESA also disseminates information regarding evidence-based practices and reviews of research.

NCSER's Early Career Development and Mentoring in Special Education program supports researchers in special education and early intervention in their first years at institutions of higher education as they develop their own line of independent research, including those focused on students with ASD. NCSER's Postdoctoral Research Training in Special Education Program supports the training of postdoctoral fellows within institutions of higher education in the conduct of special education and early intervention research, with some programs including autism as a focus of research.

National Center for Education Evaluation and Regional Assistance

Through the Special Education Studies and Evaluation program, the National Center for Education Evaluation and Regional Assistance (NCEE) supports large-scale studies focused on children or youth with disabilities, including those with ASD. The National Longitudinal Transition Study 2012 (NLTS 2012) supports the collection of data on the characteristics, school experiences, and outcomes after high school for a nationally representative sample of over 10,000 transition-aged youth with disabilities (ages 13-21), including approximately 1,000 youth with ASD. In 2017, NCEE released reports using NLTS 2012 data that included comparisons of youth with individualized education programs (IEPs) to youth without IEPs, as well as outcomes for youth by disability category.

National Center for Education Statistics

The National Center for Education Statistics (NCES) conducts longitudinal surveys as part of its mission to collect and analyze data related to education in the United States. The Early Childhood Longitudinal Study, Kindergarten Class of 2010-11 (ECLS-K:2011), is a part of a series of longitudinal studies supported by NCES that provide information about children's cognitive, social, emotional, and physical development as well as their home environment, educational activities, school and classroom environment, classroom curriculum, and before- and after-school care. This study included a nationally representative sample of kindergartners selected from public and private schools in 2010-11 with approximately 2,570 students with disabilities and approximately 1,570 of those students followed through fourth grade. Approximately 240 of these students were reported by their parents as having an ASD diagnosis.

National Center for Education Research

The National Center for Education Research (NCER) supports the Department of Education's Small Business Innovation Research (SBIR) program, which funds the development and testing of education technology products to improve education outcomes. One priority area within the SBIR program focuses on improving outcomes for children with or at risk for disability. As part of this priority area, NCER has supported the development of products aimed at improving outcomes for students with ASD. NCER may also support projects focused on students with disabilities under their Postsecondary and Adult Education research topic and their Researcher-Practitioner Partnerships in Education Research program, though no studies focused on ASD have been funded to date under these programs.

Office of Special Education and Rehabilitative Services

OSERS supports programs to assist states and school districts in serving children and youth with disabilities, provides for the rehabilitation of youth and adults with disabilities, and supports discretionary grant programs to improve the lives of individuals with disabilities. Through its two main components, the Office of Special Education Programs (OSEP) and the Rehabilitation Services Administration (RSA), OSERS supports a comprehensive array of programs and projects that support individuals with disabilities, including individuals with ASD. OSEP administers IDEA and RSA administers the Rehabilitation Act of 1973, as amended by WIOA.

Office of Special Education Programs

The Office of Special Education Programs (OSEP) is responsible for overseeing the administration of IDEA to assist eligible children and youth with disabilities, including those with ASD. OSEP provides funding to states to make available early intervention services to infants and toddlers with disabilities under IDEA Part C. OSEP also provides funding to states, and through them to local educational agencies, to assist in making a free appropriate public education available to children with disabilities, ages three through 21, under IDEA Part B. Through these formula grants, children with ASD are served as part of all children with disabilities."Autism" is one of the thirteen disabilities that is included in IDEA's definition of "child with a disability" in 20 U.S.C. 1401(3). OSEP also provides funds through IDEA's Part D discretionary grants to benefit children with disabilities, including some grants that have a focus on improving services for children with ASD. These grants are not specifically in place to implement the Autism CARES Act. OSEP currently funds 22 grants that prepare master's level personnel (e.g., early interventionists, special educators, and related services providers) to serve children with disabilities, including children with ASD, or doctoral level personnel to conduct research and teach children with disabilities, including within the area of ASD.

OSEP also funds projects that generate products and services that are relevant to children with ASD even though they do not focus specifically on children with ASD. Some examples include:

  • The Center on Positive Behavioral Interventions and Supports (PBIS), which provides schools with 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 including behavior related to ASD;
  • The State Personnel Development Grants program, which authorizes competitive grants to State Educational Agencies to provide in-service professional development to personnel serving children with disabilities, including children with ASD;
  • The IRIS Center, which develops evidence-based professional development and college coursework instructional modules that have addressed aspects of ASD; and
  • Autism Focused Intervention Resources and Modules (AFIRM), which are professional development modules that address instructional and behavioral interventions for young children with ASD.

In addition, through Parent Training and Information Centers across the nation, OSEP funds training and information for families of children with disabilities, including children with ASD. These parent centers, comprised of Parent Training and Information Centers (PTIs) and Community Parent Resource Centers (CPRCs), provide a variety of services including one-to-one support and assistance, workshops, publications, and resource-rich 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 IDEA; and
  • Connect with other local, state, and national resources that assist children with disabilities.

Rehabilitation Services Administration

The Rehabilitation Services Administration (RSA) is responsible for overseeing the administration of the Rehabilitation Act of 1973 (Rehabilitation Act), as amended by title IV of WIOA, to assist individuals with disabilities, including those individuals with the most significant disabilities, to achieve competitive integrated employment. RSA funds state vocational rehabilitation agencies under titles I, III, and VI of the Rehabilitation Act to assist them in providing training and services to individuals with disabilities, including individuals with ASD. RSA also assists states to provide supported employment services to individuals with the most significant disabilities, including the provision of ongoing support services, to enable them to succeed in competitive integrated employment. Under WIOA, there is a heightened emphasis on serving students and youth with disabilities. The Rehabilitation Act authorizes the provision of pre-employment transition services to students with disabilities, the provision of extended services to youth with the most significant disabilities seeking supported employment outcomes, and requirements under section 511 of the Rehabilitation Act for youth with disabilities under section 511 for youth seeking subminimum wage employment to ensure an informed choice regarding opportunities for competitive integrated employment. Additionally, under title I of the Rehabilitation Act, RSA funds discretionary grants for the American Indian Vocational Rehabilitation Services program to provide services to American Indians with disabilities who live on or near reservations. Individuals with ASD, including students and youth with ASD, are served through all of these programs.

RSA awards discretionary grants, including four career pathways grants to assist individuals with disabilities, a national Parent Training and Information center (PTI), and seven state/regional PTIs to support families of students and youth with disabilities, including those with ASD.

Office of Postsecondary Education

OPE works to strengthen the capacity of colleges and universities to promote reform, innovation and improvement in postsecondary education, promote and expand access to postsecondary education and increase college completion rates for students, and broaden global competencies that drive the economic success and competitiveness of the nation.

The Model Comprehensive Transition and Postsecondary Programs for Students with Intellectual Disabilities (TPSID), in ED's Office of Postsecondary Education (OPE), provides grants to institutions of higher education (IHE) or consortia of IHE to enable them to create or expand high quality, inclusive model comprehensive transition and postsecondary programs for students with ID.

TPSID projects establish model comprehensive transition and postsecondary programs that:

  1. serve students with ID;
  2. provide individual supports and services for the academic and social inclusion of students with ID in academic courses, extracurricular activities, and other aspects of the institution of higher education's regular postsecondary program;
  3. with respect to the students with ID participating in the model program, provides a focus on —
    1. academic enrichment;
    2. socialization;
    3. independent living skills, including self-advocacy skills; and
    4. integrated work experiences and career skills that lead to gainful employment;
  4. integrate person-centered planning in the development of the course of study for each student with an ID participating in the model program;
  5. participate with the coordinating center established under section 777(b) in the evaluation of the model program;
  6. partner with one or more local educational agencies to support students with ID participating in the model program who are still eligible for special education and related services under IDEA, including the use of funds available under part B of such Act to support the participation of such students in the model program;
  7. plan for the sustainability of the model program after the end of the grant period; and
  8. create and offer a meaningful credential for students with ID upon the completion of the model program.

ED also supports the coordinating center under Sec 777(b) of the Higher Education Act of 1965, as amended - Part D - Programs to Provide Students with Disabilities with a Quality Higher Education. The coordinating center works with IHE that offer inclusive comprehensive transition and postsecondary programs for students with intellectual disabilities, including institutions funded under the TPSID Program. The coordinating center provides technical assistance to IHEs that offer comprehensive transition and postsecondary programs for students with intellectual disabilities, and it will work with these programs to evaluate program components and recommend standards for such programs.

Based on program-level data collected by the TPSID Coordinating Center, approximately 27 percent of the students served by the TPSID program had autism, most in conjunction with an ID. The percentage breaks down as follows:

  • In Cohort 1 (2010-2015) there were 545 students identified as having autism, a number that represents approximately 25 percent of the full population of 2,170 TPSID students.
  • In Cohort 2 (2015-2018) there were 275 of 1,016 TPSID students (approximately 27 percent) were identified as having autism.
  • The overall percentage of students served who indicated that they had autism is 26 percent (for both cohorts).

Interagency Coordination and Implementation of the IACC Strategic Plan

The Department of Education participates as a member agency on the IACC and FIWA.

ED-funded projects and agency activities address the following areas of the IACC Strategic Plan: Question 1 (Screening and Diagnosis), Question 4 (Treatments and Interventions), Question 5 (Services), Question 6 (Lifespan Issues), and Question 7 (Infrastructure and Surveillance). Within the ED's Institute of Education Sciences, the National Center for Special Education Research continues to encourage a broad range of research on ASD in its field-initiated research competition. This research includes the development and testing of innovative interventions (including programs, policies, and practices) intended to improve the developmental and education outcomes for students identified with or at risk for ASD from birth through Grade 12. It also includes support for evaluating new or widely-used interventions for efficacy and effectiveness. The grants funded are those rated highly for their research rigor and significance to the field by peer-reviewers, and as evidenced by the projects reported elsewhere in this document, are often relevant to the objectives of the Strategic Plan developed by the IACC.

ED ASD-Related Expenditures (FY 2014 - FY 2017)
Office FY 2014 FY 2015 FY 2016 FY 2017 Total

Office

IES*

FY 2014

$18,720,177

FY 2015

$35,406,514

FY 2016

$27,329,600

FY 2017

$20,204,788

Total

$101,661,079

Office

OSERS

Office

84.325D & 84.325K

FY 2014

AFIRM

FY 2015

$10,000,000

FY 2016

$8,000,000

FY 2017

$7,250,000

Total

$35,750,000

Office

AFIRM

FY 2014

$400,000

FY 2015

$0

FY 2016

$0

FY 2017

$0

Total

$400,000

Office

Total

FY 2014

$29,620,177

FY 2015

$45,406,514

FY 2016

$35,329,600

FY 2017

$27,454,788

Total

$137,811,079

Table 11. Department of Education Funding for ASD Activities.
* IES projects with a focus or partial focus on children/youth with autism are included.

Department of Defense

The U.S. Department of Defense (DoD) is charged with coordinating and supervising all agencies and functions of the government concerned directly with national security and the United States Armed Forces. This report provides details on research and service and support activities in the Army (DoD-Army) and the Air Force (DoD-Air Force), as well as the health care activities of the Military Health System (MHS).

Army

Autism Research Program

The DoD Autism Research Program (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 $7.5M for research on ASD in the military. Following in FY 2008 through FY 2017, the DoD ARP has continued through the Defense Health Program with additional appropriations. From FY 2007-2017 a total of $74.4M has been designated for research into ASD through an addition to the DoD appropriation bill. This program is not authorized or funded through the Autism CARES Act.

The ARP is a partnership between the DoD, researchers, and consumers. 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. This sense of urgency has resulted in funding research aimed at having an immediate impact on those with ASD. Examples include:

  • A study conducted by Drs. Nancy Minshew and Shaun Eack (University of Pittsburgh) to investigate the use of Cognitive Enhancement Therapy (CET) for adults with ASD. Findings showed that CET improves neurocognition, social cognition and employment in adults with ASD.
  • Dr. Christopher Lopata (Canisius College) is investigating the use of an innovative outpatient psychosocial treatment, MAXout. The effects of this treatment on social and computation skills in children with ASD are currently being studied.
  • A clinical trial conducted by Dr. James Adams (Arizona State University) is investigating the use of Microbiota Transfer Therapy in adults with ASD to reduce gastrointestinal problems often seen in those with ASD as well as several related symptoms of autism.

Over the past several years the ARP has focused efforts on funding interventions that support ASD youth during the transition to adulthood. Examples include:

  • A study being conducted by Dr. Paul Wehman (Virginia Commonwealth University) is looking at the effects of a job internship program for transition aged military dependents with ASD. Individuals with ASD often experience unemployment and underemployment; this study has the potential to increase employment, social communication and overall quality of life for those military dependents with ASD.
  • The use of virtual reality smart glasses for people with ASD to enhance their transition into a workplace environment is being investigated by Dr. Joseph Salisbury (Brain Power LLC). By combining off the shelf technology with software to visualize workplaces and interact with job coaches, this study has the potential to promote independence for those with ASD.
  • The Carolina Autism Transition Study, which is conducted by Dr. Laura Carpenter (Medical University of South Carolina), is assessing service utilization patterns for individuals with ASD during the transition from adolescence to adulthood. This study will identify critical time periods where individuals with ASD are at risk of losing support services or encountering negative life events. Findings from this study will allow for large scale efforts to target specific ASD youth at certain time points to minimize these issues.

Another critical initiative of the ARP is to fund research to understand and alleviate co-occurring conditions that are often observed in those with ASD. Examples of projects funded in this area include:

  • Dr. Zohreh Talebizadeh (Children's Mercy Hospitals and Clinics) found that a particular gene, RXFP3, may contribute to the higher rate of obesity seen in those with ASD. Obesity and its complications are twice as common in children with ASD.
  • Dr. Cade Nylund (Uniformed Services University of the Health Sciences) conducted a retrospective analysis of health system records to identify co-morbid conditions observed with ASD. This study found that there is almost a two times increase in the odds of a child with ASD developing obesity complications including Type 2 diabetes, hypertension and hyperlipidemia. Anxiety disorders are very common in individuals with ASD, but little is known about the early risk factors for anxiety in the disorder.
  • Drs. Geraldine Dawson, Kimberly Carpenter and Brian Boyd (Duke University and University of North Carolina Chapel Hill) are conducting an in-depth study to investigate the inter-relationship between sensory over-responsivity, attention and anxiety symptoms to identify early risk factors for anxiety disorders in individuals with ASD.

Each year the advisory panel 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 panel will utilize the information contained in the 2016-2017 IACC Strategic Plan when developing the ARP's objectives for the coming year and beyond. The ARP will continue to complement the funding efforts of the various funding agencies within the IACC, while keeping the program's sense of urgency at the forefront.

Interagency Coordination and Implementation of the IACC Strategic Plan

In addition to the activities described above, DoD-Army participates as a member agency on the IACC and FIWA. DoD-Army-funded projects and agency activities address the following areas of the IACC Strategic Plan: Question 1 (Screening and Diagnosis), Question 2 (Underlying Biology), Question 3 (Risk Factors), Question 4 (Treatments and Interventions), Question 5 (Services) and Question 6 (Lifespan Issues).

Air Force

The Department of Defense-Air Force (DoD-Air Force) first became involved with ASD research in 2008 when it was designated to manage a Congressionally-funded project sponsored by Senator Deborah Pryce of Ohio. The project, Comprehensive Clinical Phenotyping and Genetic Mapping for the Discovery of Autism Susceptibility Genes (2009-2012) 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, DoD-AF executed Research, Development, Technology, and Evaluation dollars to fund a follow-on effort titled, "A Collaborative Translational Autism Research Program for the Military" (2012-2015) which formally closed out in 2016. This collaborative research project with the NCH enabled the continued expansion of the CORA with the addition of 65 families (259 individuals) being enrolled in the existing CORA, including 26 families from Wright-Patterson Air Force Base (WPAFB). Ninety-six percent of these families had a chromosomal microarray analysis performed. Exome sequencing was performed on 210 individuals from both projects with the identification of 7 clinically relevant, likely pathogenic variants in probands related to their ASD diagnosis. Transcriptome analysis and subsequent analysis in CORA trios of 14 single nucleotide polymorphisms in relevant genes found a significant association between a variant in the serotonin receptor 2A gene that modulates its expression. Preliminary data also suggest an association between ASD and the immune-related genes C4A and DEFA3. Finally, using a mouse model for an X-linked gene involved in cholesterol synthesis, it was demonstrated that behavioral abnormalities consistent with a role for the pathway in neural development and, perhaps, ASD. Families enrolled in CORA were able to participate in cutting edge molecular and genetic research studies. Direct benefits to families from WPMC included improved clinical care through the interaction of the WPMC developmental pediatricians with an experienced clinical geneticist who has expertise in the genetics of autism. In addition, families received a newsletter twice a year that contained important information about autism, CORA, and ongoing research studies. Medically significant findings from the research were shared with families who indicated on the consent forms that they wish to receive this information.

The research was distributed through the following means:

Publications:

  • Smith Herman GE, Hansen-Kiss, E, Wolfgang S, & Barrie, E. A Collaborative Translational Autism Research Program for the Military. 2016: Defense Technical Information Center, available at: http://www.dtic.mil/dtic/tr/fulltext/u2/a631878.pdf
  • Whole transcriptome RNA-Seq allelic expression in human brain. BMC Genomics. 2013; 14:571.
  • Smith RM, Banks W, Hansen E, Sadee W, Herman GE. Family-based clinical associations and functional characterization of the serotonin 2A receptor gene (HTR2A) in autism spectrum disorder. Autism Res. 2014; 7(4):459-467.
  • Smith RM, Webb A, Papp AC, Newman LC, Handelman SK, et al. Whole transcriptome RNA-Seq allelic expression in human brain. BMC Genomics. 2013; 14:571.

Abstracts and Posters:

  • Banks W, Cunningham D, Hansen E, Ratliff-Schaub K, Butter E, et al. Exome sequencing of 43 sporadic cases with an autism spectrum disorder in a local cohort of families identifies severe de novo variants and implicates additional genes in ASD pathogenesis. Poster presented at the American Society of Human Genetics Annual Conference; 2014 Oct 18-22; San Diego.
  • Wang H, Lintner K, Hansen E, Zhou B, Wu YL, et al. DEFA3/A1 and complement C4A are medium effect-size risk factors for human autism spectrum disorders (ASD). Poster presented at the American Society of Human Genetics Annual Conference; 2013 Oct 23-26; Boston.

Presentations:

  • Smith R. Identifying common functional regulatory polymorphisms in autism spectrum disorders using RNA AmpliSeq. Presentation to the Society of Neuroscience Annual Conference; 2013 Nov 9-13; San Diego.

Interagency Coordination and Implementation of the IACC Strategic Plan

While DoD-AF is not a member of the IACC or the FIWA, Air Force-funded projects address Question 2 (Underlying Biology) of the IACC Strategic Plan.

Military Health System (MHS)/TRICARE

TRICARE offers comprehensive medical care to over 9.4 million beneficiaries (active duty service members, military retirees, and their eligible family members), including over 2 million children. This also includes over 29,000 individuals diagnosed with autism spectrum disorder. The MHS includes physician and other licensed independent provider services, pharmacy coverage, psychosocial treatment, psychological testing, occupational therapy, physical therapy, and speech and language pathology for the treatment of ASD to all eligible TRICARE beneficiaries under the TRICARE Basic Program, which is the medical benefit plan of the MHS. A separate but related TRICARE 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. The Department has provided coverage for Applied Behavior Analysis (ABA) services to family members of active duty service members since 2001 under either the ECHO program or a demonstration project. Coverage for retiree family members was added on July 26, 2012.

On July 25, 2014, all prior ABA service programs were consolidated into one demonstration, the Comprehensive Autism Care Demonstration (ACD), which provided a consistent ABA benefit program to all TRICARE eligible beneficiaries diagnosed with ASD. Approximately 14,500 TRICARE eligible beneficiaries are currently enrolled in the ACD, with over 25,000 ABA providers rendering ABA services. Participation in ABA service programs has significantly increased since FY 2009, when 2292 beneficiaries receiving ABA services. For FY 2017, the ACD costs totaled $268 million dollars. The ACD was originally scheduled to end December 31, 2018, however, the ACD has been extended until December 31, 2023 to obtain more information on how to classify ABA services under the TRICARE benefit and best serve military beneficiaries with ASD. The ACD removed all quantitative and non-quantitative limits on ABA services, including dollar caps, hour caps, and age caps. Over the course of the demonstration, the Defense Health Agency (DHA) has hosted various round table and information sessions for interested stakeholders to include but not limited to: ABA providers, Active Duty military providers, advocates, families, and congressional staff. Additionally, current ACD initiatives include TRICARE quality management audits, outcome measures, parent surveys, and DoD Office of the Inspector General audits. The Department is currently working on a number of improvements to the ACD, including enhanced support to parents and caregivers, improved care coordination, and ensuring that services are directed to those beneficiaries who will benefit the most, with the focus always being on helping military beneficiaries diagnosed with ASD to reach their maximum potential.

Most services for military beneficiaries are provided through a contracted network of civilian providers, however several military treatment facilities have recently developed programs to support beneficiaries diagnosed with ASD and their families. These initiatives include

  • The Fort Belvoir Community Hospital (FBCH) Autism Resource Center (ARC), which is designed to provide resources for beneficiaries newly diagnosed with ASD and their families.
  • The Joint Based Lewis McCord Center for Autism Resources, Education and Services (JBLM CARES) program which provides patient-centered care services for beneficiaries diagnosed with ASD and their families during the transition period of locating purchased care services.
  • The Play & Language for Autistic Youngsters (P.L.A.Y.) Project, first launched within the MHS at Wright Patterson Air Force Base (WPAFB), which provides training of a portable parent-focused early childhood intervention to beneficiaries diagnosed with ASD.

To acquire additional information on ABA services under TRICARE, the Defense Health Agency has been working with the Congressionally Directed Medical Research Program (CDMRP), which has awarded a $7 million contract to a research group from the University of Rochester. The results of the CDMRP study will further DHA's understanding of the impact of ABA services delivered to ACD participants and aims to provide important data regarding the most beneficial amount of ABA services. Additionally, findings from this study may benefit the larger community of individuals diagnosed with ASD and their families in several ways, including but not limited to, offering more choices to families, potentially identifying response to treatment through predictive factors, and lowering cost while increasing access. The CDMRP study was awarded September 2018. This study will provide an annual report starting in 2020 and has a duration of five years.

Interagency Coordination and Implementation of the IACC Strategic Plan

TRICARE participates as a member agency on the FIWA.

Other Agencies and Departments

The Environmental Protection Agency, National Science Foundation, Social Security Administration, and the Departments of Housing and Urban Development, Justice, Labor, and Transportation are not mentioned in and do not have programs authorized under the Autism CARES Act, 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, ED and DoD.

Environmental Protection Agency

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 Children's Environmental Health and Disease Prevention Research Centers (Children's Centers), an extramural grant program jointly funded by EPA and the National Institute for Environmental Health Sciences (NIEHS), has a goal of understanding how environmental factors affect children's health, and promoting translation of basic research findings into intervention and prevention methods to prevent adverse health outcomes. While the Children's Centers are not specifically in place to implement the Autism CARES Act, ASD research has been supported by the following authorities:

  • The Safe Drinking Water Act, Section 1442, 42 U .S.C. 300j-l
  • The Toxic Substances Control Act, Section I 0, 15 U.S.C. 2609
  • The Federal Insecticide, Fungicide, and Rodenticide Act, Section 20, 7 U.S.C. 136r
  • The Clean Air Act, Section 103, 42 U.S.C. 7403
  • The Clean Water Act, Section 104, 33 U.S.C. 1254
  • The Solid Waste Disposal Act, Section 8001, 42 U.S.C. 6981
  • The National Environmental Policy Act, Section 102(2)(F)

The 2013 EPA Children's Centers award to UC Davis was funded under EPA's Science to Achieve Results (STAR) grant program and focuses on environmental risk factors for ASD and developmental delays. Specifically, the UC Davis center studies the epigenetic mechanisms of toxicant exposure on immune function; develops and applies new biomarkers of autism risk; characterizes the potential health effects of environmental exposures and various life stages; and predicts long-term clinical and behavioral consequences. The environmental chemicals that this center examines with regard to ASD include polybrominated diphenyl ethers (PBDEs), perfluorooctanoic acid (PFOA), perfluorooctanesulfonic acid (PFOS), and pesticides. EPA funding for this project totaled $1,867,642 from FY 2014-2018 and was awarded by EPA in incremental payments.

Several notable research findings have resulted from this project. Children's Centers researchers have identified potential links between air pollution, pesticides, occupational exposures, phthalates, and risks of ASD. Some examples are listed in Appendix v. Work under the UC Davis Center ends in May 2019 and future funding for Children's Environmental Health and Disease Prevention Research Centers remains uncertain.

Interagency Coordination and Implementation of the IACC Strategic Plan

EPA participates as a member agency on the IACC and FIWA. EPA-funded research addresses Question 3 (Risk Factors) of the IACC Strategic Plan.

Department of Housing and Urban Development

The U.S. Department of Housing and Urban Development (HUD) works to strengthen the housing market in order to bolster the economy and protect consumers; meet the need for quality affordable rental homes; utilize housing as a platform for improving quality of life; and build inclusive and sustainable communities free from discrimination. HUD administratively enforces several civil rights laws prohibiting housing discrimination, including the Fair Housing Act, Section 504 of the Rehabilitation Act, and the Americans with Disabilities Act (ADA). With few exceptions, the Fair Housing Act covers housing throughout the country.

Section 504

Section 504 provisions apply to recipients of HUD financial assistance, including the Community Development Block Grant, Public Housing, Multifamily, Housing Choice Voucher, and other programs. HUD's Section 504 regulations (at 24 CFR § 8.4c) permit exclusion of non-disabled persons from the benefits of a program if the program is limited by federal statute or executive order to individuals with disabilities, and also permits exclusion of a specific class of individuals with disabilities from a program if the program is limited by federal statute or executive order to a different class of individuals. However, HUD does not have disability-specific programs, such as housing specifically for persons with ASD.

Section 811 Supportive Housing for Persons with Disabilities

Section 811 program, HUD provides funding to develop and subsidize rental housing with the availability of supportive services for very low- and extremely low-income adults with disabilities.

Interagency Coordination and Implementation of the IACC Strategic Plan

While HUD is not directly involved in implementing the IACC Strategic Plan, services provided by the agency are available to individuals with disabilities, including those with ASD and their families.

Department of Justice

The U.S. Department of Justice (DOJ) ensures fair and impartial administration of justice for all Americans.

Civil Rights Division

Within DOJ, the Civil Rights Division works to uphold the civil and constitutional rights of people with disabilities, including people with ASD and other DD. The Division coordinates the activities of the various federal agencies that have obligations under Section 504 and Title II of the ADA.

The Educational Opportunities Section enforces anti-discrimination statutes in elementary and secondary schools and institutions of higher education, including the ADA, Section 504 of the Rehabilitation Act, the Equal Educational Opportunities Act, Title VI of the Civil Rights Act, and upholds rights under the 14th Amendment to the U.S. Constitution in educational settings.

  • In August 2016, DOJ filed suit against the State of Georgia for allegedly discriminating against students with disabilities in its operation of the Georgia Network for Educational and Therapeutic Supports (GNETS), a statewide network of segregated special education programs operated by the State. Approximately 4,000 students are enrolled in segregated GNETS facilities across the State, including students with autism. GNETS facilities are often far from students' homes and lack appropriate resources.
  • Since 2014, DOJ has reached numerous agreements with school districts to ensure that English learner (EL) students who have disabilities, including students with autism, receive the educational services to which they are entitled. Most recently, in August 2018, DOJ reached an agreement with Providence, Rhode Island public schools under the Equal Educational Opportunities Act. Under the agreement, the school district will provide appropriate services to EL students with disabilities and will effectively communicate with limited-English proficient parents about their children's educational programs.

The Disability Rights Section administers and enforces the ADA to achieve equal opportunity for people with disabilities in the United States. The Section also coordinates the activities of federal agencies under Section 504 of the Rehabilitation Act and Title II of the ADA. Key concepts that are common to DOJ's section 504 and ADA regulations include: reasonable accommodations/modifications; program accessibility; and effective communication.

  • ADA Requirements: Testing Accommodations was released in 2015 to ensure that people with disabilities who are taking standardized examinations for the purpose of gaining entry to high school, college, or graduate programs, or for those attempting to obtain professional licensure or certification for a trade, have the opportunity to fairly compete for and pursue such opportunities. The guidance addresses a testing entity's obligation to offer exams in a manner that is accessible to people with disabilities and does not measure a person's disability, but instead measures the individual's aptitude or achievement level.
  • ADA Requirements: Effective Communication was released in 2014 to ensure that state and local governments, as well as businesses and nonprofit organizations that serve the public, communicate with people with vision, hearing, or speech disabilities in a manner that is equally as effective as their communication with people without disabilities.
  • In collaboration with ED's Office for Civil Rights and Office of Special Education and Rehabilitative Services, DOJ released Frequently Asked Questions on Effective Communication for Students with Hearing, Vision, or Speech Disabilities in Public Elementary and Secondary Schools in 2014 to address the obligation of public schools to meet the communication needs of students with disabilities.

The Special Litigation Section enforces Title II of the ADA, the Civil Rights of Institutionalized Persons Act, and Section 14141 of the Violent Crime Control and Law Enforcement Act of 1994. The Section's work has addressed conditions at healthcare facilities for individuals with disabilities, the rights of individuals with disabilities to live in their communities and not be unnecessarily segregated in institutional facilities, and the appropriate diversion of individuals with disabilities from the criminal justice system.

Office of Justice Programs

The DOJ Office of Justice Programs (OJP) provides leadership to federal, state, local, and tribal justice systems through national dissemination of state-of-the art knowledge and practices, and the provision of grants, training, and technical assistance for the implementation of crime and violence reduction strategies. Within OJP, the Bureau of Justice Assistance (BJA) provides leadership and assistance to local criminal justice agencies that improve and reinforce the nation's criminal justice system. BJA works to reduce and prevent violent and drug-related crime, support law enforcement, and combat victimization.

In 2013 BJA funded The Arc of the United States, Inc.'s project for the National Center on Criminal Justice and Disability (NCCJD), to build a national resource center to address challenges the justice system faces when it encounters people with disabilities in the areas of law enforcement, courts, and corrections. The Center's "Pathways to Justice" initiative works to increase capacity of criminal justice professionals to respond to individuals with disabilities by providing training, technical assistance, and education. The Center brings together professionals from the disability and criminal justice fields to share expertise and provides training using a team approach, with the goal of becoming the go-to resource in their community or state on issues related to criminal justice and disability. The program had a budget of $800,000 in FY 2013-2017 and is currently providing technical assistance through the "Serving Safely" initiative, under a cooperative agreement between Vera Institute of Justice and the Bureau of Justice Assistance. Products and resources developed through the Serving Safely program are made publicly available to law enforcement and their behavioral health partners. The Pathways to Justice initiative was established pursuant to the Edward Byrne Memorial Justice Assistance Grant Program (42 USC 3751(a) et seq.), and funding for the Serving Safely initiative is provided through the Consolidated Appropriations Act, 2017 (P.L. 115-31) 131 Stat 135, 203.

Interagency Coordination and Implementation of the IACC Strategic Plan

DOJ participates as a member agency of the FIWA.

Question 5 of the 2016-2017 IACC Strategic Plan emphasizes the implementation of evidence-based interventions in community settings. The Office of Justice Programs, Bureau of Justice Assistance provided grant support to The Arc to fund the NCCJD, which serves as a resource focusing on people with ID and DD who interact with the criminal justice system as suspects, offenders, victims, or witnesses. The NCCJD's "Pathways to Justice" initiative works to increase the capacity of criminal justice professionals to respond to individuals with disabilities by providing training, technical assistance, and education.

Question 6 of the Strategic Plan emphasizes activities that facilitate and incorporate acceptance, accommodation, inclusion, independence, and integration of people on the autism spectrum into society. DOJ works continually to ensure the accommodation, inclusion, independence, and integration of people with ASD by upholding the civil and constitutional rights of people with disabilities, including people with ASD and other DD.

Department of Labor

The U.S. Department of Labor (DOL) works to improve full access to gainful employment opportunities for all Americans, including Americans with disabilities. DOL also supports career pathways for youth and adults through its support for workforce development and job training programs. The ASD-relevant initiatives described below have received funding since FY 2014, but they are not specifically in place to implement the Autism CARES Act of 2014.

American Apprenticeship Grants

The Employment and Training Administration (ETA) within DOL has funded 2 American Apprenticeship Initiative Grants, which are authorized by the American Competitiveness and Workforce Improvement Act of 1998 (ACWIA), as amended [Section 414(c)].

The AHIMA Foundation received an award in 2015 for its Managing the Talent Pipeline in Health Information Apprenticeship program. This five-year grant (2015-2020) supports the development of a competency-based, on-the-job training program in health informatics for approximately 1,200 recent college graduates and working learners. This training program supports on-ramps for participants to health care data management careers. It also incorporates a medical coding apprenticeship with a track specifically for adults on the autism spectrum. The total amount of this award is $4,919,839.

ETA also awarded an American Apprenticeship grant to Managed Career Services, Inc. in 2015 for its OpenTech LA Regional Apprenticeship Collaborative. This five-year grant (2015-2020) supports the development of a collaborative that connects youth and young adults to apprenticeship and pre-apprenticeship programs in the Los Angeles, California metropolitan area. This collaborative proposes to support 300 apprentices and 200 pre-apprentices in fields including health information technology, biotechnology, computer programming, and computer systems. One of OpenTech LA's 18 partner organizations is the Exceptional Minds Studio, a computer animation studio with a three-year vocational training program for young adults on the autism spectrum. Participating young adults receive customized instruction in digital animation and visual effects, earn two to three certifications for Adobe software programs, and complete work readiness courses. Students at the Exceptional Minds studio have recently worked on television and movies that include Game of Thrones, The Hunger Games, and Dr. Strange. The total amount of this award is $2,974,070.

H-1B Tech Hire Partnership Grant

ETA awarded a H1-B Tech Hire Partnership Initiative Grant grant to the Exceptional Family Center in 2016 for its Next Step Job Training and Employment Partnership. This five-year grant (2016-2021) supports the development of a market-driven, job training and employment partnership to train and employ individuals on the autism spectrum in three California counties (Kern, Inyo, and Mono). Targeted job seekers are young adults aged 18-27 who are out of secondary school and diagnosed on the autism spectrum. The Next Step partnership proposes to support job development in health care and information technology for approximately 450 people on the autism spectrum over a four-year period. It includes boot camps for training on soft skills to improve employability and job performance; these camps incorporate trainings on effective communication, workplace behavior, and independent living skills. The partnership also supports employer education to reduce workplace barriers. The total amount of this award is $3,997,504 and is authorized by the ACWIA, as amended [Section 414(c)].

Pathways to Careers: Community Colleges for Youth and Young Adults with Disabilities Demonstration Grants

The Office of Disability Employment Policy (ODEP) awarded Pathways to Careers Demonstration grants to Pellissippi State Community College (PSCC) in Knoxville, TN and Onondaga Community College (OCC) in Syracuse, NY in 2014. These grants to PSCC and OCC support researching, developing, testing, and evaluating innovative approaches to providing comprehensive, coordinated, and integrated inclusive education and career development to youth and young adults with disabilities aged 14-24. The grants also increase institutional capacity within the community college system by building an evidence base of policies and practices that are most effective in helping youth and young adults with disabilities to thrive. As of fall 2018, approximately 43 percent of students who participate in PSCC's Universal Pathways to Employment Project identify as persons on the autism spectrum. Approximately 22 percent of students who participate in OCC's Pathways to Careers project identify as persons on the autism spectrum.

Interagency Coordination and Implementation of the IACC Strategic Plan

DOL participates as a member agency on the FIWA. While DOL is not directly involved in implementation of the IACC Strategic Plan, DOL-funded projects and agency activities broadly impact individuals with disabilities and their families, including those with ASD.

DOL ASD-Related Expenditures (FY 2014 - FY 2018)
Initiative Funded FY 2014 FY 2015 FY 2016 FY 2017 FY 2018

Initiative Funded

American Apprenticeship Grant to AHIMA Foundation

FY 2014

FY 2015 - FY 2018

$4,919,839*

Initiative Funded

American Apprenticeship Grant to Managed Career Services, Inc.

FY 2014

FY 2015 - FY 2018

$2,974,070*

Initiative Funded

H-1B Tech Hire Partnership Grant awarded to Exceptional Family Center

FY 2014

FY 2015 - FY 2018

$3,997,504*

Initiative Funded

Pathways to Careers Demonstration Grant awarded to Onondaga Community College

FY 2014

$978,453

FY 2015

$1,024,323

FY 2016

$812,616

FY 2017

$978,573

FY 2018

$978,453

Initiative Funded

Pathways to Careers Demonstration Grant awarded to Pellissippi Community College

FY 2014

$1,028,869

FY 2015

$1,028,716

FY 2016

$989,441

FY 2017

$991,625

FY 2018

$1,028,000

Initiative Funded

Pathways to Careers Demonstration Grants: Combined Funding for both grants by FY

FY 2014

$2,007,322

FY 2015

$2,053,039

FY 2016

$1,802,057

FY 2017

$1,970,198

FY 2018

$2,006,453

Table 12. DOL funding for ASD-related activities.
*ETA awards its full grant amount in total; the total budgeted amounts per fiscal year for each of their grants are not publicly sharable.

National Science Foundation

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. While NSF does not have an ASD research program, the agency has awarded numerous research grants through the years that include research on ASD and other DD. These research awards, including current active awards, fall under a portfolio that emphasizes neuroscience, cognitive sciences, and education and learning research. The NSF's award search website offers the public the opportunity to learn about specific NSF awards.

Interagency Coordination and Implementation of the IACC Strategic Plan

NSF does not participate as a member agency on the IACC or FIWA, but it has continued efforts to regularly monitor the agency's funding of basic science and science education research about, and including, persons with ASD. NSF conducts searches of the IACC Autism Research Database searches to avoid funding duplication. NSF participates in the Interagency Committee on Disability Research as a statutory member, to monitor and contribute to interagency actions relevant to basic science and science education research about, and including, persons with disabilities. NSF also monitors the implementation and progress made on implementation related to the IACC Strategic Plan by virtually observing the quarterly IACC meetings, reviewing the relevant IACC reports, and examining the annual and final reports of NSF-funded projects about, and including, persons with ASD. NSF-funded research projects address all seven Question areas of the IACC Strategic Plan.

IHS ASD-Related Expenditures, (FY 2014 - FY 2017)
FY 2014 FY 2015 FY 2016 FY 2017

Year

Number of Projects (Awards)

FY 2014

15

FY 2015

9

FY 2016

16

FY 2017

7

Year

Total Obligations

FY 2014

$2,881,721

FY 2015

$1,291,726

FY 2016

$4,777,599

FY 2017

$1,921,163

Table 13. NSF basic science and science education funding related to, or including, persons with ASD.


Social Security Administration

The mission of the Social Security Administration is to deliver quality Social Security services to the public. SSA administers two disability programs authorized under the Social Security Act – the Social Security Disability Insurance program (SSDI; title II) and the Supplemental Security Income (SSI) program (title XVI). Under these programs, the SSA evaluates claims involving allegations of ASD for both adults and children. These programs are not specifically in place to implement the Autism CARES Act.

Currently, over 300,000 individuals with a primary impairment of Autistic Disorders receive SSI payments, including almost 175,000 children and over 125,000 adults. Relatively few SSDI beneficiaries have an Autistic Disorder (<65,000).

SSA follows a five-step sequential evaluation process for evaluating adult disability claims:

  • Consider whether the adult is engaging in substantial gainful activity.
  • Consider whether he or she has a severe medically determinable impairment. At this step, SSA considers allegations of ASD in conjunction with the medical and other evidence to establish the medically determinable impairment and its severity.
  • Consider whether the severe medically determinable impairment(s) meets or medically equals one of the listings. At this step, ASD is considered under mental disorders listing 12.10 in 20 CFR Part 404, Subpart P, Appendix 1. If the adult does not have an impairment that meets or medically equals a listing, SSA determines the residual functional capacity (RFC) resulting from the ASD and any co-existing medically determinable impairments.
  • Determine whether the person's RFC would permit him or her to perform any past relevant work he or she may have.
  • Determine whether the person's RFC would permit him or her to perform any other work that exists in the national economy.

SSA follows a three-step sequential evaluation process for evaluating child disability claims: First, we

  • Consider whether the child is engaging in substantial gainful activity.
  • Determine whether the child has a severe medically determinable impairment that meets or medically equals a listing. At this step, ASD is considered under mental disorders listing 112.10 in 20 CFR Part 404, Subpart P, Appendix 1.
  • Determine whether the child's ASD and co-existing medically determinable impairments functionally equal the listings, using the whole child approach.

In FY 2017, SSA processed 20,592 initial adult claims for ASD. Of those claims, 63.4 percent were found to meet our requirements and were allowed benefits. SSA processed 35,296 initial child claims for ASD and 81.4 percent were allowed benefits. Overall, 74.8 percent of adult and child claims for ASD were allowed compared with an overall allowance rate for initial claims of 34.7 percent.

For calendar year 2017, the sum of the monthly payment amounts at the time of the award for the 25,786 SSI children recipients with a primary diagnosis of autistic disorders was $15,993,742, while the sum for 12,367 SSI adult recipients with a primary diagnosis of autistic disorders was $7,641,597.

The sum of the monthly benefit amounts at the time of the award for the 9,840 Title II beneficiaries (SSDI) with a primary diagnosis of autistic disorders was $6,265,226.

SSA recently began working with researchers at the A.J. Drexel Autism Institute to produce research describing participation in the SSI program by adults with ASD. The first publications from this work, describing general trends of adult SSI participation by this population, are expected to be available in 2019.

Interagency Coordination and Implementation of the IACC Strategic Plan

SSA participates as a member agency on the IACC and FIWA. While SSA is not directly involved in implementing the IACC Strategic Plan, services provided by the agency are available to individuals with disabilities, including those with ASD and their families.

Department of Transportation

The U.S. Department of Transportation (DOT) works to ensure transportation that is fast, safe, efficient, accessible and convenient to improve the quality of life of people in the United States.

The DOT's Accessible Transportation Technologies Research Initiative (ATTRI) is a joint multi-modal, multi-agency initiative, co-led by the Federal Highway Administration, Federal Transit Administration, and Intelligent Transportation Systems Joint Program Office, with support from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) within HHS/ACL, and other federal partners. The ATTRI Program is leading efforts to develop and implement transformative applications to improve mobility options for all travelers, particularly those with disabilities. ATTRI research focuses on removing barriers to transportation for people with visual, hearing, cognitive, and mobility disabilities. Emerging technologies and creative service models funded by ATTRI will offer all Americans enhanced travel choices and accessibility at levels once only imagined. DOT has awarded application development funding for Wayfinding and Navigation, Pre-trip Concierge & Virtualization, Safe Intersection Crossing with NIDILLR awarding a grant in the Robotics and Automation technology area.

Working together, the four technology areas will provide the basis for an accessible transportation network that is far more economical, expansive, and welcoming than we have now, which is of increasing importance not only to travelers with disabilities, but to all travelers in the United States. A number of ATTRI technology sites are exploring different solutions and applications are envisioned to assist travelers with cognitive disabilities including those with ASD.

The ATTRI program is not specifically in place to implement the Autism CARES Act and is executed using the Fixing America's Surface Transportation Act (FASTACT) and other DOT authorizing legislation or other authority that supports the conduct of the DOT program(s).

Interagency Coordination and Implementation of the IACC Strategic Plan

DOT participates as a member agency on the FIWA. While DOT is not directly involved in implementing the IACC Strategic Plan, DOT-funded research and activities broadly impact individuals with disabilities, including those with ASD and their families.

Elements
Progress
Prevalence

 
Interagency Autism Coordinating Committee
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