OBJECTIVES:

To provide an overview and quantitatively demonstrate the reach of the Health Resources and Services Administration’s Maternal and Child Health Bureau autism research program.

METHODS:

We reviewed program reports and internal data from 59 autism research grantees. The US federal Interagency Autism Coordinating Committee’s strategic plan questions were used as a framework to highlight the contributions of the autism research program in advancing the field.

RESULTS:

The autism research program grantees advance research in several ways. Grantees have strengthened the evidence for autism interventions by conducting 89 studies at 79 distinct research sites. A total of 212 708 participants have enrolled in autism research program studies and 361 researchers have contributed to furthering autism research. The program addresses topics that align with the majority of the Interagency Autism Coordinating Committee’s priority topic areas, including advancements in treatments and interventions, services and supports, and identifying risk factors. Grantee products include 387 peer-reviewed publications, 19 tools, and 13 practice guidelines for improving care and intervention practices.

CONCLUSIONS:

The autism research program has contributed to medical advances in research, leveraged innovative training platforms to provide specialized training, and provided access to health services through research-based screening and diagnostic procedures. Autism research program studies have contributed to the development of evidence-based practice guidelines, informed policy guidelines, and quality improvement efforts to bolster advancements in the field. Although disparities still exist, the Health Resources and Services Administration’s Maternal and Child Health Bureau can reduce gaps in screening and diagnosis by targeting interventions to underserved populations including minority and rural communities.

What’s Known on This Subject:

A qualitative description on the purpose and utility of the Health Resources and Services Administration’s Maternal and Child Health Bureau autism research program has been previously presented.

What This Study Adds:

In this study, we provide quantitative indicators on the nationwide reach of the Health Resources and Services Administration’s Maternal and Child Health Bureau autism research program and their alignment with US federal priorities for autism research.

Autism spectrum disorder (henceforth referred to as “autism”) is a range of developmental disabilities affecting an estimated 1 in 40 to 1 in 59 children in the United States.1,2  Characterized by impairments in social communication and interaction and repetitive patterns of behavior, interests, and activities, autism is diagnosed by observation of behaviors.3  Although multiple psychiatric and medical comorbidities are commonly reported among individuals with autism, individuals on the spectrum vary widely in their symptomatic presentation and levels of impairment. Once diagnosed, individuals face additional challenges accessing the array of health, education, and related support services recommended.1  As knowledge advances, access to autism-related services improves and research and treatment guidelines change, yet providers are faced with the challenge of staying informed. Although research on genetic risks and underlying causes of autism remains important, there is an increased need for effective tools and strategies to maximize quality of life and minimize disability while ensuring that individuals with autism are accepted and integrated into community living across the life span.4 

Growing public concerns about increased autism prevalence, increased need for health services, and the increased economic and emotional burden on families culminated in national calls for policy and programmatic actions.1,510  In 2019, the US Congress reauthorized the Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act, authorizing federal investments in research, surveillance, and education activities related to autism and other developmental disabilities (Public Health Service Act, § 399BB[f] [42 U.S.C. § 280i-1(f)], as amended by Autism CARES Act of 2019 [P.L. 116-60]).11  Under the act, the federal Maternal and Child Health Bureau (MCHB) at the Health Resources and Services Administration (HRSA), US Department of Health and Human Services, receives funds supporting autism grants that advance training, research, and the development of comprehensive, coordinated state systems of care. HRSA works to improve health care for geographically isolated and economically or medically vulnerable populations through autism grants, which enable all infants, children, and adolescents who have or are at risk for developing autism to reach their full potential by developing a system of autism services early on, including screening, interdisciplinary evaluations to confirm diagnosis, and evidence-based interventions once diagnosed. These grants reduce barriers to developmental screening and diagnosis, support research to advance evidence-based interventions for autism, promote the development of evidence-based guidelines for interventions, and train professionals to use valid and reliable developmental screening and diagnostic tools.

HRSA’s MCHB autism research program comprises 4 broad applied and translational research program categories (Table 1).11  These programs are aimed at increasing the understanding of autism to improve screening, diagnosis, and treatment. Previous publications have described the purpose and utility of the autism research program.12,13  Briefly, the program supports research studies that advance the current knowledge base for autism, which can lead to improvements in interventions addressing the physical and behavioral health needs of children and adolescents with autism, promote the development of evidence-based guidelines for intervention, validate tools for autism screening or intervention, and disseminate information to health professionals and families affected by autism. In this article, we provide an overview and update on the autism research program; specifically, we (1) examine the reach of our autism research program, (2) explore its efforts to advance the evidence base for autism research and practice, and (3) assess its alignment with federal autism efforts.

TABLE 1

Distribution of HRSA’s MCHB Autism Research Program Grants by Type

Program by TypeNo. GrantsProgram Description
RN The Autism Research Network Program establishes and maintains interdisciplinary, national, multisite, collaborative research to advance the evidence base on the effectiveness of interventions to improve the health and well-being of children and adolescents with ASD and other DDs to advance best practices for early identification. RNs provide the infrastructure to foster research collaboration among experts in the field. The RN grants are Autism Intervention Research Network on Physical Health, Autism Intervention Research Network on Behavioral Health, Developmental Behavioral Pediatrics Research Network, Health Care Transitions Research Network, and Healthy Weight Research Network among Children with Autism Spectrum Disorder and other Developmental Disabilities. 
SIIP The Autism SIIP supports focused research on priority, emerging, and underdeveloped ASD research areas. Priority topic areas being addressed by the Autism SIIP program include longitudinal analysis of risk factors for ASD and other DDs, intervention research, trajectories of child development, and healthy life transitions among adolescents and young adults. The SIIP grants are the Autism Longitudinal Data Project and the Autism Transitions Research Project. 
Autism FIRST 32 The Autism FIRST Program supports interventions designed to improve the health and well-being of children and adolescents with ASD and DDs, with a particular focus on addressing barriers to identification, diagnosis, and services among underserved populations. 
Autism SDAR 20 The Autism SDAR Program supports secondary data analysis of existing publicly available and accessible national databases and/or administrative records to advance best practices and determine the evidence-based practices for interventions that improve the physical and behavioral health of children and adolescents with ASD and DDs. 
Program by TypeNo. GrantsProgram Description
RN The Autism Research Network Program establishes and maintains interdisciplinary, national, multisite, collaborative research to advance the evidence base on the effectiveness of interventions to improve the health and well-being of children and adolescents with ASD and other DDs to advance best practices for early identification. RNs provide the infrastructure to foster research collaboration among experts in the field. The RN grants are Autism Intervention Research Network on Physical Health, Autism Intervention Research Network on Behavioral Health, Developmental Behavioral Pediatrics Research Network, Health Care Transitions Research Network, and Healthy Weight Research Network among Children with Autism Spectrum Disorder and other Developmental Disabilities. 
SIIP The Autism SIIP supports focused research on priority, emerging, and underdeveloped ASD research areas. Priority topic areas being addressed by the Autism SIIP program include longitudinal analysis of risk factors for ASD and other DDs, intervention research, trajectories of child development, and healthy life transitions among adolescents and young adults. The SIIP grants are the Autism Longitudinal Data Project and the Autism Transitions Research Project. 
Autism FIRST 32 The Autism FIRST Program supports interventions designed to improve the health and well-being of children and adolescents with ASD and DDs, with a particular focus on addressing barriers to identification, diagnosis, and services among underserved populations. 
Autism SDAR 20 The Autism SDAR Program supports secondary data analysis of existing publicly available and accessible national databases and/or administrative records to advance best practices and determine the evidence-based practices for interventions that improve the physical and behavioral health of children and adolescents with ASD and DDs. 

HRSA’s MCHB autism research program consists of 4 grant programs. Names of specific grants are included in the table. Data reflect the 2009–2018 project period. ASD, autism spectrum disorder; DD, developmental disabilities; RN, research network.

We analyzed several sources to summarize the overall progress in achieving the autism research program objectives using reports submitted by 59 grantees, awarded from 2009 to 2018, and data regarding grantee products and dissemination to key stakeholders.4  We analyzed program reach examining the following select indicators: research sites, research studies, study participants (primary or secondary data studies), peer-reviewed publications, and researchers involved. We used the 7 strategic plan questions identified by the Interagency Autism Coordinating Committee (IACC), an advisory committee coordinating federal autism activities and advising the US Secretary of Health and Human Services, as a framework to highlight the contributions of the autism research program toward advancing the field and supporting care and practice. These questions highlight key programmatic and policy areas for improving the health and quality of life of individuals with autism. Our categorization of the IACC questions are presented in Table 2.14 

TABLE 2

Categorizations of IACC Questions

IACC Topic AreasIACC Questions
Infrastructure and/or surveillance How do we continue to build, expand, and enhance the infrastructure system to meet the needs of the autism community? 
Life span How can we meet the needs of people with autism as they progress into and through adulthood? 
Service What kinds of services and supports are needed to maximize quality of life for people on the autism spectrum? 
Treatments and/or interventions Which treatments and interventions will help? 
Risk factors What causes autism, and can disabling aspects of autism be prevented or preempted? 
Biology What is the biology underlying autism? 
Screening and/or diagnosis How can I recognize the signs of autism, and why is early detection so important? 
IACC Topic AreasIACC Questions
Infrastructure and/or surveillance How do we continue to build, expand, and enhance the infrastructure system to meet the needs of the autism community? 
Life span How can we meet the needs of people with autism as they progress into and through adulthood? 
Service What kinds of services and supports are needed to maximize quality of life for people on the autism spectrum? 
Treatments and/or interventions Which treatments and interventions will help? 
Risk factors What causes autism, and can disabling aspects of autism be prevented or preempted? 
Biology What is the biology underlying autism? 
Screening and/or diagnosis How can I recognize the signs of autism, and why is early detection so important? 
a

IACC questions are excerpted from the Interagency Autism Coordinating Committee, Office of Autism Research Coordination. 2017 Summary of Advances in Autism Spectrum Disorder Research. Available at: https://iacc.hhs.gov/publications/summary-of-advances/2017/summary_of_advances_2017.pdf. Accessed August 1, 2018.

The autism research program has a broad reach, spanning 20 US States and the District of Columbia, with grantees in some states having multiple research grants and grant types (Fig 1). Since 2009, HRSA’s MCHB has funded 59 autism-focused projects. More than 62% of studies include underserved populations as study participants, examining disparities in access to care and early intervention or challenges with social skills, engagement, and communication at home or at school.

FIGURE 1

HRSA’s MCHB autism research program grantee locations across the United States. The number within each shape signifies the number of grants and/or sites by program type within each state. AL, Alabama; AZ, Arizona; AR, Arkansas; CA, California; CO, Colorado; CT, Connecticut; DC, District of Columbia; DE, Delaware; FL, Florida; GA, Georgia; IL, Illinois; IN, Indiana; IA, Iowa; ID, Idaho; KS, Kansas; KY, Kentucky; LA, Louisiana; ME, Maine; MD, Maryland; MA, Massachusetts; MI, Michigan; MN, Minnesota; MS, Mississippi; MO, Missouri; NE, Nebraska; NV, Nevada; NH, New Hampshire; NJ, New Jersey; MT, Montana; NM, New Mexico; NY, New York; NC, North Carolina; ND, North Dakota; OH, Ohio; OK, Oklahoma; OR, Oregon; PA, Pennsylvania; RI, Rhode Island; SC, South Carolina; SD, South Dakota; TN, Tennessee; TX, Texas; UT, Utah; VT, Vermont; VA, Virginia; WA, Washington; WV, West Virginia; WI, Wisconsin; WY, Wyoming.

FIGURE 1

HRSA’s MCHB autism research program grantee locations across the United States. The number within each shape signifies the number of grants and/or sites by program type within each state. AL, Alabama; AZ, Arizona; AR, Arkansas; CA, California; CO, Colorado; CT, Connecticut; DC, District of Columbia; DE, Delaware; FL, Florida; GA, Georgia; IL, Illinois; IN, Indiana; IA, Iowa; ID, Idaho; KS, Kansas; KY, Kentucky; LA, Louisiana; ME, Maine; MD, Maryland; MA, Massachusetts; MI, Michigan; MN, Minnesota; MS, Mississippi; MO, Missouri; NE, Nebraska; NV, Nevada; NH, New Hampshire; NJ, New Jersey; MT, Montana; NM, New Mexico; NY, New York; NC, North Carolina; ND, North Dakota; OH, Ohio; OK, Oklahoma; OR, Oregon; PA, Pennsylvania; RI, Rhode Island; SC, South Carolina; SD, South Dakota; TN, Tennessee; TX, Texas; UT, Utah; VT, Vermont; VA, Virginia; WA, Washington; WV, West Virginia; WI, Wisconsin; WY, Wyoming.

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The program grantees have advanced research in several ways. As of 2018, the autism research program has produced 387 peer-reviewed articles targeting a broad array of disciplines and subspecialties. Grantees have developed interventions and conducted research on the efficacy of interventions, developed medical and behavioral treatment practice guidelines, created assessment measures and tool kits for caregivers and providers, and developed practice guidelines for standards of care. They conducted studies to improve physical and behavioral health, standardize clinical practice, better understand the transition to adulthood, and assess overweight and obesity among the autism population. Grantees have strengthened the evidence for autism interventions, conducting 89 studies at 79 research sites across the United States (Table 3). Many of the intervention research activities involved families and individuals from underserved populations. A total of 212 708 participants have enrolled in autism research program studies, and 361 researchers have contributed to autism research (Table 3). Grantees produced 13 practice guidelines covering topics such as treatment of anxiety and behavioral problems, weight management and nutrition education, health care transition, and behavioral interventions for social engagement and developed and/or validated and disseminated 19 tools for health care and educational professionals. They created products for families and caregivers to use as resources for overcoming common challenges related to autism. The grantees also provided mentorship to junior investigators ensuring the sustainability of the applied and translational research enterprise and train the next generation of autism researchers.

TABLE 3

Impact of HRSA’s MCHB Autism Research Program by Select Indicators

Program TypeSelect Indicators
No. Research SitesNo. StudiesNo. Participants EnrolledNo. Peer-Reviewed PublicationsNo. Researchers Involved
RN 45 77 27 817 300 218 
SIIP 8600 10 15 
Autism FIRST 31 915 54 123 
Autism SDAR 175 376 23 
Total 79 89 212 708 387 361 
Program TypeSelect Indicators
No. Research SitesNo. StudiesNo. Participants EnrolledNo. Peer-Reviewed PublicationsNo. Researchers Involved
RN 45 77 27 817 300 218 
SIIP 8600 10 15 
Autism FIRST 31 915 54 123 
Autism SDAR 175 376 23 
Total 79 89 212 708 387 361 

Data reflect the 2017–2018 project period. RN, research network.

Since inception, HRSA MCHB has funded 5 national autism research networks (Table 1). In recent studies, authors have identified gaps in our understanding of the risk factors and long-term sequelae of autism. Moreover, the aging of this population raises questions on the ability of the system to transition and care for individuals with autism.15 To improve our understanding of the longitudinal impact of autism in children and families and address health care transition challenges, in 2017, HRSA MCHB established 2 Single Investigator Innovation Programs (SIIPs) (Table 1). The foci of Autism Field-Initiated Innovative Research Studies (FIRST) and Autism Secondary Data Analysis Research (SDAR) Program grants are multidisciplinary (eg, improving access to autism specialized services and reducing social anxiety in schools).

Furthermore, grantees addressed topics that align with a majority of the IACC priority topic areas (Fig 2). In 2017, 13 studies contributed to advancements in treatments and interventions. Eight of the studies identified needed services and supports to maximize quality of life for individuals with autism. Five studies were focused on better understanding the underlying causes of autism, identifying risk factors, and assessing the feasibility of developing preventive strategies. Notably, 3 grant studies were cited in the IACC 2017 Summary of Advances, a publication that represents national scientific advances and progress in the autism field.16 In one study, authors found that prenatal exposure to fever, especially in the third trimester, was associated with the development of autism.17  The results of this study may inform clinical strategies to reduce the incidence of maternal fever and support previous studies revealing a relationship between the prenatal environment and autism. Authors of another study reported the need to ensure optimal levels of folate and B12 to reduce the risk of autism onset.18  Although folate is administered to pregnant women to prevent neural tube defects, this study revealed that very high or very low folate levels and very high B12 levels were associated with increased risk of autism. Authors of another study compared the autism diagnostic criteria from the Diagnostic and Statistical Manual of Mental Disorders in Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, with Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, to determine how changes impacted national autism incidence rates.19  The study found that the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, criteria had relatively high sensitivity (the ability of the diagnostic test to correctly identify people with autism) and near-perfect specificity (the ability of the diagnostic test to correctly identify people without autism).

FIGURE 2

Research coverage according to IACC topic areas, 2017.

FIGURE 2

Research coverage according to IACC topic areas, 2017.

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Autism is a multifaceted disorder with complex and varying symptomologies that can be challenging to detect early.20,21  The heterogeneity of autism presentation leaves many pediatricians unprepared to treat children at risk for autism while striving to conduct recommended clinical screenings and referrals for diagnostic evaluation and treatment. Practice- and field-based research provide platforms for interdisciplinary exchange of ideas in which pediatricians collectively learn to improve care for children with or at the risk of autism.22,23  The autism research program has expanded the national understanding of autism and developmental disabilities, contributed to medical advances, leveraged innovative training platforms to provide specialized training, and provided access to health services through research-based screening and diagnostic procedures. Studies have increased the knowledge base for successful interventions, contributed to the development of evidence-based practice guidelines, and informed policy guidelines and quality improvement efforts to bolster advancements in the field.

Scientific evidence about the effectiveness of autism interventions has increased in recent years in part because of research funds appropriated through Autism CARES.12  Still, there are areas in which evidence is lacking.24,25  Few evidence-based interventions address motor skills, cognitive performance, vocational skills, and mental health.26  Fidelity of interventions in real-world settings, timing and dose of interventions, and long-term or maintenance effects of interventions are uncertain.12,27  Despite significant efforts toward conducting intervention research with minority and underserved populations, socioeconomic, racial, and ethnic disparities in the identification and treatment of children with autism persist.18,2830  Routine standardized developmental screening may reduce disparities in age at diagnosis and possibly reduce racial and ethnic disparities in access to services.2729,31 

There is a need for research that addresses family-specific challenges and incorporates the family perspective. A family-centered research approach engages parents in study design and implementation.32  Several grantees have developed interventions to provide resources for parents of young children and toddlers with autism, such as a comprehensive communication intervention for minimally verbal children with autism and the use of family navigators to improve services for newly diagnosed children, which help decrease parental stress and improve family functioning.

Autism research program studies have enrolled diverse participants and ensured the cultural sensitivity of study materials and reveal that evidence-based and evidence-informed care can improve health care quality and consequently improve health outcomes.22,33  Recruiting underserved children into research studies can be challenging yet is critical for improving their representation in autism research to enhance reach and application to these populations. Similarly, it is important to ensure the participation of rural, non–English-speaking, or low-literacy participants in autism studies. Grantees have implemented telehealth initiatives to alleviate the burden of traveling to and from research clinics and increase scheduling flexibility for underserved families.

Despite concerted efforts to provide early access to screening and diagnosis, disparities exist. The autism research program is reducing gaps in screening and diagnosis by targeting interventions to underserved populations including minority and rural communities.12  Looking ahead, the program will identify opportunities to improve knowledge on emerging issues through applied and translational research.15 Emerging research in this area presents new topics such as fostering inclusive environments focused on neurodiversity, developing proactive health care transitions, expanding care and services for individuals with autism across the life span, engaging families in care and research, and empowering pediatricians and specialists through shared learning.

We thank Ms Erica Caesar, MSPH, MBA, and Insight Policy Research for their contributions in the preparation of this article.

Drs DiBari and Azuine conceptualized and designed the study, drafted the initial manuscript, and reviewed and revised the manuscript; Dr Linares wrote sections of, reviewed, and extensively revised the manuscript; Ms Rocha developed all figures and tables and reviewed and revised the manuscript; Dr Kogan, Ms Park, Ms Raskin Ramos, and Ms Kavanagh critically reviewed the manuscript for important intellectual content; and all authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.

FUNDING: Supported by the Health Resources and Services Administration of the US Department of Health and Human Services. The information, content, and/or conclusions are those of the authors and should not be construed as the official position or policy of nor should any endorsements be inferred by the Health Resources and Services Administration, US Department of Health and Human Services, or the US government.

     
  • CARES

    Collaboration, Accountability, Research, Education, and Support

  •  
  • FIRST

    Field-Initiated Innovative Research Studies

  •  
  • HRSA

    Health Resources and Services Administration

  •  
  • IACC

    Interagency Autism Coordinating Committee

  •  
  • MCHB

    Maternal and Child Health Bureau

  •  
  • SDAR

    Secondary Data Analysis Research

  •  
  • SIIP

    Single Investigator Innovation Program

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Competing Interests

POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.

FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.