Report to Congress
on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities
FY 2014 - FY 2018
Appendices
Appendix i: List of Acronyms
AAP: American Academy of Pediatrics
ABA: Applied Behavioral Analysis
ACC: NIH Autism Coordinating Committee
ACD: Comprehensive Autism Care Demonstration
ACE: Autism Centers of Excellence
ACF: Administration for Children and Families
ACL: Administration for Community Living
ADA: Americans with Disabilities Act
ADDM: Autism and Developmental Disabilities Monitoring
ADFM: Active Duty Family Member
ADOS: Autism Diagnostic Observation Schedule
AHRQ: Agency for Healthcare Research & Quality
AI/AN: American Indian/Alaska Natives
AIDD: Administration on Intellectual and Developmental Disabilities
AIR-P: Autism Intervention Research Network on Physical Health
AIR-B: Autism Intervention Research Network on Behavioral Health
AOSI: Autism Observation Scale for Infants
ARP: Department of Defense Autism Research Program
ASD: Autism Spectrum Disorder
ASPE: Office of the Assistant Secretary for Planning and Evaluation
ATRP: Autism Transitions Research Project
ATTRI: Accessible Transportation Technologies Research Initiative
Autism CARES Act: Autism Collaboration, Accountability, Research, Education, and Support Act of 2014
BJA: Bureau of Justice Assistance
CAA: Combating Autism Act of 2006
CAAI: Combating Autism Act Initiative
CARA: Combating Autism Reauthorization Act of 2011
CCEH: Center for Children's Environmental Health
CDC: Centers for Disease Control and Prevention
CDMRP: Congressionally Directed Medical Research Programs
CER: Comparative Effectiveness Review
CHA: Children's Health Act of 2000
CHIP: Children's Health Insurance Program
CMHI: Children's Mental Health Initiative
CMS: Centers for Medicare & Medicaid Services
CORA: Central Ohio Registry for Autism
CSESA: Center on Secondary Education for Students with Autism Spectrum Disorders
DBP: Developmental Behavioral Pediatrics
DBPNet: Developmental Behavioral Pediatrics Research Network
DD: Developmental Disability
DD Act: Developmental Disabilities Assistance and Bill of Rights Act
DHA: Defense Health Agency
DoD: Department of Defense
DoD-Army: Department of Defense-Army
DoD-AF: Department of Defense-Air Force
DOJ: Department of Justice
DOL: Department of Labor
DOT: Department of Transportation
DSM: Diagnostic and Statistical Manual of Mental Disorders
EBM: Evidence-Based Medicine
ECHO: Extended Care Health Option
ED: Department of Education
EEG: Electroencephalogram
EHR: Electronic Health Record
EMR: Electronic Medical Record
EPA: Environmental Protection Agency
EPSDT: Early and Periodic Screening, Diagnosis, and Treatment Program
ETA: Employment and Training Administration
FACA: Federal Advisory Committee Act
FDA: Food and Drug Administration
FIRST: Field Initiated and Innovative Research Studies
FIWA: Federal Interagency Workgroup on ASD
FOA: Funding Opportunity Announcement
FXS: Fragile X Syndrome
FY: Fiscal Year
HCBS: Home and Community-Based Services
HCT-RN: Health Care Transitions Research Network for Youth and Young Adults with ASD
HHS: Department of Health and Human Services
HRSA: Health Resources and Services Administration
HUD: Department of Housing and Urban Development
HW-RN: Healthy Weight Research Network
IACC: Interagency Autism Coordinating Committee
IC: NIH Institutes and Centers
ICDR: Interagency Committee on Disability Research
ICP: Indian Children's Program
ID: Intellectual Disability
IDEA: Individuals with Disabilities Education Act
IEP: Individualized Education Program
IES: Institute of Education Sciences
IHE: Institution of Higher Education
IHS: Indian Health Service
IWG: Interagency Workgroup
LEAP: Learning Experiences—An Alternative Program for Preschoolers and Parents
LEND: Leadership Education in Neurodevelopmental Disabilities
MADDSP: Metropolitan Atlanta Developmental Disabilities Surveillance Program
M-CHAT: Modified Checklist for Autism in Toddlers
M-CHAT-R/F: Modified Checklist for Autism in Toddlers Revised with Follow-up
MCH: Maternal and Child Health
MCHB: Maternal and Child Health Bureau
MHS: Military Health System
NAC: National Autism Coordinator
NADFM: Non-Active Duty Family Member
NBB: NeuroBioBank
NCATS: National Center for Advancing Translational Sciences
NCBDDD: National Center on Birth Defects and Developmental Disabilities
NCCIH: National Center for Complementary and Integrative Health
NCCJD: National Center on Criminal Justice and Disability
NCEE: National Center for Education Evaluation and Regional Assistance
NCER: National Center for Education Research
NCES: National Center for Education Statistics
NCI: National Cancer Institute
NCSER: National Center for Special Education Research
NDAR: National Database for Autism Research
NEI: National Eye Institute
NHGRI: National Human Genome Research Institute
NHIS: National Health Interview Survey
NHLBI: National Heart, Lung, and Blood Institute
NIBIB: National Institute of Biomedical Imaging and Bioengineering
NICHD: Eunice Kennedy Shriver National Institute of Child Health and Human Development
NIDA: National Institute on Drug Abuse
NIDCD: National Institute on Deafness and Other Communication Disorders
NIDCR: National Institute of Dental and Craniofacial Research
NIDILRR: National Institute on Disability, Independent Living, and Rehabilitation Research
NIEHS: National Institute of Environmental Health Sciences
NIGMS: National Institute of General Medical Sciences
NIH: National Institutes of Health
NIH RePORTer: NIH Research Portfolio Online Reporting Tool
NIMH: National Institute of Mental Health
NINDS: National Institute of Neurological Disorders and Stroke
NDAR: National Database for Autism Research
NLM: National Library of Medicine
NLTS 2012: National Longitudinal Transition Study 2012
NSCH: National Survey of Children's Health
NSF: National Science Foundation
OARC: Office of Autism Research Coordination
OD: Office of the Director, NIH
OJP: Office of Justice Programs
ORR: Office of Refugee Resettlement
OSEP: Office of Special Education Programs
OSERS: Office of Special Education and Rehabilitative Services
PCP: Primary Care Provider
PDD: Pervasive Developmental Disorder
PROMIS: NIH Patient Reported Outcome Measurement Information System
PTI: Parent Training and Information Centers
RCT: Randomized Controlled Trial
RFC: Residual Functional Capacity
RSA: Rehabilitation Services Administration
SAMHSA: Substance Abuse and Mental Health Services Administration
SBIR: Small Business Innovation Research
SDAR: Secondary Data Analysis Research Program
SEED: Study to Explore Early Development
SOE: Strength of Evidence
SSA: Social Security Administration
SSDI: Social Security Disability Insurance Program
SSI: Supplemental Security Income Program
STEPS: Stepped Transition in Education Program for Students with ASD
THBCE: Telebehavioral Health Center of Excellence
TPSID: Model Comprehensive Transition and Postsecondary Programs for Students with Intellectual Disabilities
TSC: Tuberous Sclerosis Complex
UC: University of California
UCEDD: University Centers for Excellence in Developmental Disabilities Education, Research, and Service
USDA: U.S. Department of Agriculture
USPSTF: U.S. Preventative Services Task Force
VR: Vocational Rehabilitation
WIC: Special Supplemental Nutrition Program for Women, Infants, and Children
WIOA: Workforce Innovation and Opportunity Act of 2014
Appendix ii: Report to Congress on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities under the Combatting Autism Act of 2006 and the Combatting Autism Reauthorization Act of 2011 (FY 2010 – FY 2012): Summary and Highlights
Cross-Agency Coordination
The Interagency Autism Coordinating Committee (IACC) consists of 15 public and 15 federal members (in 2013) who convene on a regular basis (16 times in 2010, 10 times in 2011, 20 times in 2012, and 26 times in 2013) to coordinate all efforts in autism spectrum disorder (ASD) research within HHS and provide advice to the Secretary of HHS on ASD research and services.
The Office of Autism Research Coordination (OARC) at NIH provides coordination for IACC member agencies, support for all IACC activities and publications, and serves as a liaison between the IACC and federal agencies, Congress, and the public.
The IACC developed and has annually updated a Strategic Plan for ASD Research. The first IACC Strategic Plan was issued in 2009 and updates were issued in 2010, 2011, 2012, and 2013.
Since 2008, the IACC has published the ASD Research Portfolio Analysis Report, which is a comprehensive analysis of both federally and privately funded autism research projects and funding. The analysis tracks research progress made under the IACC Strategic Plan. The 2009 IACC ASD Research Portfolio Analysis Report was published in 2011, and the 2010 IACC ASD Research Portfolio Analysis Report was published in 2012.
Each year, the IACC publishes the Summary of Advances in ASD Research, which is a lay-friendly summary of research articles identified by the committee as having made the greatest impact on the field of autism (the 2007, 2008, 2009, 2010, 2011, and 2012 editions are available on the IACC website).
The IACC and OARC strive for a high level of public engagement and transparency by actively disseminating all committee activities, decisions, and publications through the IACC website, webcasts, webinars, newsletters, print materials, listservs, RSS feeds, and Twitter updates. The IACC seeks input from the public on a frequent basis through open comment periods during every full committee meeting and formal Requests for Information (RFI). An RFI was issued in June 2010 concerning the 2011 update to the IACC Strategic Plan.
ASD Surveillance, Awareness, and Outreach
In 2012, CDC's Autism and Developmental Disabilities Monitoring (ADDM) Network published autism prevalence data indicating that 1 in 88 children in the U.S. has an autism spectrum disorder. Since 2006, the ADDM Network has been tracking and providing the most comprehensive estimates to date of the prevalence of ASD in multiple areas of the U.S. The CDC also played a lead role in conducting more focused epidemiologic studies of ASD among Somali-American children in Minneapolis.
CDC's "Learn the Signs. Act Early." campaign has played an important role nationwide in raising awareness about early developmental milestones. The CAA/CARA strengthened the capacity of the program in educating parents, health care professionals, and early childhood educators about the importance of monitoring a child's development, seeking further evaluation when there is a concern, and beginning early intervention services as soon as possible. Since 2011, the CDC has supported three cohorts of Act Early Ambassadors, who work to improve early identification and linkage to services in their state during their tenure.
Through Parent Training and Information Centers across the nation, ED provides training for parents of children with ASD. Parent Centers, comprised of Parent Training and Information Centers (PTIs) and Community Parent Resource Centers (CPRCs), provide training and assistance to families of children with disabilities, including families of children with autism.
ACF launched a web page titled "Autism Awareness and Acceptance in Early Childhood Education," which is focused on providing information on ASD to early childhood teachers, including 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), contain numerous strategies for working with children with ASD, suggested by experts from across the country.
With funding from ACL, the Autism NOW National Autism Resource and Information Center began in October 2010 as part of a national initiative of The Arc of the United States. The initiative seeks to empower stakeholders by providing access to high-quality resources and information on community-based services and interventions for people with ASD and their families, through a national dissemination network, regional events, training and technical assistance, and an innovative web presence.
Investigating the Causes of Autism
CDC's Centers for Autism and Developmental Disabilities Research and Epidemiology (CADDRE) network supports the Study to Explore Early Development (SEED) program, which is the largest study in the United States dedicated to identifying factors that put children at risk for autism (including genes, health conditions, and environmental exposures). By the end of 2010, SEED enrolled more than 3,000 children and their families, and initial findings are due to be released in 2014. These results hold promise for greatly advancing our understanding of ASD etiologies. A second phase of SEED was initiated in 2011 (implemented in 2012). This expansion will allow for more detailed analyses of genetic and phenotypic ASD subtypes. By 2013, over 1,200 children have enrolled in SEED 2.
CDC's Immunization Safety Office published a study in the Journal of Pediatrics in 2013 that evaluated the association between immunological-stimulating protein and polysaccharide contents in vaccines and development of autism and adverse neuropsychological outcomes.17 The findings showed that the amount of antigens from vaccines received on one day of vaccination or in total during the first two years of life is not related to the development of ASD. This study strengthens the conclusion of a 2004 comprehensive review by the Institute of Medicine that there is not a causal relationship between certain vaccine type and autism.
CDC, in partnership with the Department of Defense-Autism Research Program (DoD-ARP), conducted the Blood Spot Project to investigate the relationship between development of ASD and the presence of cross-reactive antibodies present in pregnant women and infants. The results did not reveal any antigen-specific antibody binding that was associated with an increased risk for autism. However, antibody binding to pneumococcal polysaccharide antigens was associated with a modest but statistically-significant decrease in risk for ASD, suggesting the potential that this antibody actually provides protective immunity.
EPA has collaborated with the National Institute of Environmental Health Sciences (NIEHS) to establish the Center for Children's Environmental Health (CCEH) at the University of California, Davis. Research at this Center focuses on understanding environmental risk factors that may contribute to a person's susceptibility to neurodevelopmental disorders such as autism. They are also examining how biological markers, such as those related to immune system dysfunction, could help clarify why some children develop these disorders.
DoD-Army's Autism Research Program (ARP) aims to improve the lives of individuals with ASD now by promoting innovative research that advances the understanding of ASD and leads to improved outcomes. Environmental exposures and probable effects on the development of ASD have been one of the focus areas of the ARP through the funding years.
In 2013, NIH's Autism Centers of Excellence (ACE) comprised 11 research centers and networks at major research institutions and universities across the country. ACE researchers are actively working to identify the causes of ASD and develop new and improved treatments.
NIH is also accelerating the pace of ASD research discoveries through large-scale, unprecedented resource and data-sharing initiatives. Most autism researchers whose projects involve human subjects have now made data sharing with the NIH National Database for Autism Research (NDAR) part of their proposed research. In addition, other private and public autism organizations are now linked with NDAR, meaning that de-identified data from more than 61,000 consenting research participants are available across more than 400 clinical, imaging, and genomic instruments for secondary analysis by other qualified researchers.
Development of Evidence-Based Autism Treatments
Through funds provided by the Combating Autism Act Initiative (CAAI) under the CAA, HRSA established two national networks, the Autism Intervention Research Network on Physical Health (AIR-P) and the Autism Intervention Research Network on Behavioral Health (AIR-B) that are allowing researchers to gather data from different sites in order to identify promising treatments and interventions for autism.
- Since 2010, the AIR-P Network has completed five studies; published empirically based physician guidelines for the management of gastrointestinal issues, sleep, and attention deficit hyperactivity disorder (ADHD); and developed 10 toolkits for parents and providers.
- The AIR-B Network has completed and published guidelines for the implementation of psychosocial and related interventions for children with ASD and their families. The AIR-B has also developed three tools, Playground Observation of Peer Engagement (and Teen Observation of Peer Interaction), Social Networks Survey, and Active Engagement Rating Scale; it is validating two additional tools, ADOS-Change and the Pragmatic Rating Scale.
AHRQ completed two Comparative Effectiveness Reviews (CERs) to provide a comprehensive synthesis of evidence examining the benefits and harms associated with various therapies for children (ages 2-12), and for adolescents and young adults (ages 13-30).
Innovative Screening, Diagnosis, and Intervention Investments
NIH supports several ongoing efforts to improve methods for ASD screening and diagnosis. An NIH-funded study supported by the American Recovery and Reinvestment Act identified an innovative brain imaging technique for advancing accurate, early diagnosis of ASD. Additionally, investigators at an Autism Center of Excellence demonstrated the feasibility and effectiveness of 5-minute parent survey that can screen for subtle signs of ASD during a child's 1-year well-baby check-up.
High-Quality Training of ASD Practitioners and Service Providers
Through funds provided by the CAAI under the CAA, HRSA supports two programs that focus on professional and community training of health professionals in ASD diagnosis and treatment: the Leadership Education in Neurodevelopmental Disabilities (LEND) and Developmental Behavioral Pediatrics (DBP) training programs. The training efforts supported by these programs are effectively reducing barriers to screening and diagnosis by increasing professional capacity and raising awareness about ASD among providers in the community. The capacity of these training programs increased every year between from 2010 to 2012.
ACL's Administration on Intellectual and Developmental Disabilities (AIDD) supports the University Centers for Excellence in Developmental Disabilities Education, Research and Services (UCEDD) to fund interdisciplinary training, exemplary services, technical assistance, and information/dissemination activities in community settings.
ED supports the National Professional Development Center on Autism Spectrum Disorders, a multi-university center to promote the use of evidence-based practice for children and adolescents with ASD. The Center has developed resources and modules on evidence-based practices for children with ASD and provided training to professional development providers and practitioners on the use of these evidence-based practices.
Best Practices in Service Provision
An AHRQ-funded project, Innovative Adaptation & Dissemination of CER Products: Autism (iADAPT-ASD), will create a website that demonstrates, through state-of-the-art, high definition video, the best practices for treating autism, based on the AHRQ comparative effectiveness report on Therapies for Children with Autism Spectrum Disorders.
In 2011, CMS issued a Report on State Services to Individuals with Autism Spectrum Disorders (ASD), summarizing a nine-state study which assessed the implementation of evidence-based/promising practices covered by Medicaid through the lens of state experience. The report describes the types of ASD-related services and supports provided by state and local governments, the sources of funding for programs, and the policy, staffing and implementation issues that states and localities encounter in the administration of programs that serve people with ASD.
In 2014, CMS issued a report, Autism Spectrum Disorders (ASD): State of the States of Services and Supports for People with ASD, describing the results of the "State of the States" project. This study assessed existing state programs and supports for families living with ASD in 50 states and the District of Columbia, providing a comprehensive view of services that received support from various federal sources and were made available through state programs across the country.
ED's Office of Special Education Programs (OSEP) funds the Center on Positive Behavioral Interventions and Supports (PBIS), giving schools capacity-building information and technical assistance for identifying, adapting, and sustaining effective school-wide disciplinary practices and provides resources on how to prevent and address challenging behavior.
In 2012, ED released a Restraint and Seclusion: Resource Document that outlines principles for educators, parents and other stakeholders to consider when developing or refining policies and procedures for schools to support positive behavioral interventions and avoid the use of restraint and seclusion.
ASD Services and Supports across the Lifespan
SAMHSA oversees the Congressionally-mandated Comprehensive Community Mental Health Services for Children and Their Families Program (short title: Child Mental Health Initiative (CMHI)), which provides funding to develop the infrastructure for a coordinated system of services and supports and to provide services to children with serious emotional disorders. Children and their families served in this program are provided a full system of family-driven services and supports, delivered in home and community-based settings or in the least restrictive environment.
ACL/AIDD supports Developmental Disabilities Councils (DDCs) in every state and territory. DDC activities support a variety of systems change and capacity building efforts, including projects demonstrating new ideas for enhancing people's lives, training activities, community education and support, making information available to policy-makers, and working to eliminate barriers to full participation in various life areas such as education, employment, and community living.
TRICARE has recently expanded availability of applied behavior analysis (ABA) services for eligible beneficiaries. In addition to expanding services available to Active Duty Family Members (ADFMs), DoD launched a pilot program in 2013 to revise coverage of applied behavior analysis (ABA) services for Non-Active Duty Family Members (NADFMs).
ACL/AIDD also manages the Protection & Advocacy (P&A) Agencies program which supports agencies in each state to that protect the legal and human rights of people with autism and other developmental disabilities. The P&As empower people by offering information and referral services for legal, administrative, and other remedies to resolve problems and by investigating incidents of abuse and neglect and discrimination based on disability.
In 2010, ACL/AIDD launched the Autism NOW National Autism Resource and Information Center, providing access to high-quality resources and information on community-based services and interventions for people with ASD and their families, through a national dissemination network, regional events, training and technical assistance, and an innovative web presence. Autism NOW has reached thousands of individuals—including parents and family members, individuals with autism spectrum disorder and other developmental disabilities, advocates, and policymakers—through its website, Facebook and Twitter pages, webinars, summits and conferences, e-newsletters, and personal interactions.
To access the complete report, please refer to the Report to Congress on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities Under the Combating Autism Act of 2006 and the Combatting Autism Reauthorization Act of 2010 (FY 2010-FY 2012).
Appendix iii: CDC-Supported ASD Publications (2014 to May 2018)
Autism and Developmental Disabilities Monitoring (ADDM) Network
Baio J, Wiggins L, Christensen DL, et al. Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2014. MMWR Surveill Summ 2018;67(No. SS-6):1-23.
Bakian AV, Bilder DA, Carbone PS, Hunt TD, Petersen B, Rice CE. Brief Report: Independent validation of autism spectrum disorder case status in the Utah Autism and Developmental Disabilities Monitoring (ADDM) Network site. Journal of Autism and Developmental Disorders. July 2014.
Bakian AV, Bilder DA, Carbone PS, Hunt TD, Petersen B, Rice CE. Centers for Disease Control and Prevention. Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2010. MMWR Surveill Summ. 2014;63(SS02);1-21.
Christensen DL, Baio J, Van Naarden Braun K, Bilder D, Charles J, Constantino JN, Daniels J, Durkin MS, Fitzgerald RT, Kurzius-Spencer M, Lee LC, Pettygrove S, Robinson C, Schulz E, Wells C, Wingate MS, Zahorodny W, Yeargin-Allsopp M. Prevalence and characteristics of autism spectrum disorder among children aged 8 years—Autism and Developmental Disabilities Monitoring Network, 11 sites, United States, 2012. MMWR Surveillance Summary. April 2016.
Christensen DL, Bilder DA, Zahorodny W, Pettygrove S, Durkin MS, Fitzgerald RT, Rice C, Kurzius-Spencer M, Baio J, Yeargin-Allsopp M. Prevalence and characteristics of autism spectrum disorders among 4-year-old children in the Autism and Developmental Disabilities Monitoring Network. Journal of Developmental and Behavioral Pediatrics. January 2016.
Dickerson AS, Rahbar MH, Han I, Bakian AV, Bilder DA, Harrington RA, Pettygrove S, Durkin M, Kirby RS, Wingate MS, Tian LH, Zahorodny WM, Pearson DA, Moyé LA 3rd, Baio J. Autism spectrum disorder prevalence and proximity to industrial facilities releasing arsenic, lead or mercury. Science of the Total Environment. July 2015.
Durkin MS, Maenner MJ, Baio J, Christensen D, Daniels J, Fitzgerald R, Imm P, Lee LC, Schieve LA, Van Naarden Braun K, Wingate MS, Yeargin-Allsopp M. Autism spectrum disorder among us children (2002-2010): Socioeconomic, racial, and ethnic disparities. Am J Public Health 2017;107:1818-1826.
Maenner MJ, Rice CE, Arneson CL, Cunniff C, Schieve LA, Carpenter LA, Van Naarden Braun, Kirby RS, Bakian AV, Durkin MS. Potential impact of DSM-5 criteria on autism spectrum disorder prevalence estimates. JAMA Psychiatry. March 2014.
Rubenstein, E, Daniels, J, Schieve, LA, Christensen, DL, Van Naarden Braun, K, Rice, CE, Bakian, AV, Durkin, MS, Rosenberg, SA, Kirby, RS, Lee, LC. Trends in special education eligibility among children with autism spectrum disorder, 2002-2010. Public Health Rep. 2018;133(1):85-92.
Schieve LA, Clayton HB, Durkin MS, Wingate MS, Drews-Botsch C. Comparison of perinatal risk factors associated with autism spectrum disorder (ASD), intellectual disability (ID), and co-occurring ASD and ID. Journal of Autism and Developmental Disorders. March 2015.
Schieve LA, Tian LH, Baio J, Rankin K, Rosenberg D, Wiggins L, Maenner MJ, Yeargin-Allsopp M, Durkin M, Rice C, King L, Kirby RS, Wingate MS, Devine O. Population attributable fractions for three perinatal risk factors for autism spectrum disorders, 2002 and 2008 Autism and Developmental Disabilities Monitoring (ADDM) Network. Annals of Epidemiology. January 2014.
Soke GN, Maenner MJ, Christensen D, Kurzius-Spencer M, Schieve LA: Brief report: Estimated prevalence of a community diagnosis of autism spectrum disorder by age 4 years in children from selected areas in the United States in 2010: Evaluation of birth cohort effects. J Autism Dev Disord 2017a;47:1917-1922.
Study to Explore Early Development (SEED)
Andrews SV, Ellis SE, Bakulski KM, Sheppard B, Croen LA, Hertz-Picciotto I, Newschaffer CJ, Feinberg AP, Arking DE, Ladd-Acosta C, Fallin MD: Cross-tissue integration of genetic and epigenetic data offers insight into autism spectrum disorder. Nature Communications 2017.
Andrews SV, Ladd-Acosta C, Feinberg AP, Hansen KD3, Fallin MD: "Gap hunting" to characterize clustered probe signals in Illumina methylation array data. Epigenetics Chromatin 2016.
Bradley CB, Browne EN, Alexander AA, Collins J, Dahm JL, DiGuiseppi CG, Levy SE, Moody EJ, Schieve LA, Windham GC, Young L, Daniels JL: Demographic and operational factors predicting study completion in a multisite case-control study of preschool children. Am J Epidemiol 2018.
DiGuiseppi CG, Daniels JL, Fallin DM, Rosenberg SA, Schieve LA, Thomas KC, Windham GC, Goss CW, Soke GN, Currie DW, Singer AB, Lee LC, Bernal P, Croen LA, Miller LA, Pinto-Martin JA, Young LM, Schendel DE. Demographic profile of families and children in the Study to Explore Early Development (SEED): Case-control study of autism spectrum disorder. Disability and Health Journal. January 2016.
DiGuiseppi C, Levy SE, Sabourin KR, Soke GN, Rosenberg S, Lee LC, Moody E, Schieve LA: Injuries in children with autism spectrum disorder: Study to explore early development (seed). J Autism Dev Disord 2017.
Ladd-Acosta C, Shu C, Lee BK, Gidaya N, Singer A, Schieve LA, Schendel DE, Jones N, Daniels JL, Windham GC, Newschaffer CJ, Croen LA, Feinberg AP, Daniele Fallin M. Presence of an epigenetic signature of prenatal cigarette smoke exposure in childhood. Environmental Research. January 2016.
Mitra I, Tsang, K, Ladd-Acosta C, Croen L, Aldinger, KA, Hendren, RL, Weiss, LA: Pleiotropic Mechanisms Indicated for Sex Differences in Autism. PLoS Genetics 2016.
Moody EJ, Reyes N, Ledbetter C, Wiggins L, DiGuiseppi C, Alexander A, Jackson S, Lee LC, Levy SE, Rosenberg SA: Screening for autism with the SRS and SCQ: Variations across demographic, developmental and behavioral factors. J Autism Dev Disord 2017;47:3550-3661
Rosenberg SA, Moody EJ, Lee LC, DiGuiseppi C, Windham GC, Wiggins LD, Schieve LA, Ledbetter CM, Levy SE, Blaskey L, Young L, Bernal P, Rosenberg CR, Fallin MD: Influence of family demographic factors on social communication questionnaire scores. Autism Res 2018.
Rubenstein E, Edmondson Pretzel R, Windham GC, Schieve LA, Wiggins LD, DiGuiseppi C, Olshan AF, Howard AG, Pence BW, Young L, Daniels J: The broader autism phenotype in mothers is associated with increased discordance between maternal-reported and clinician-observed instruments that measure child autism spectrum disorder. J Autism Dev Disord 2017.
Rubenstein E, Schieve L, Bradley C, DiGuiseppi C, Moody E, Thomas K, Daniels J: The prevalence of gluten free diet use among preschool children with autism spectrum disorder. Autism Res 2017.
Rubenstein E, Wiggins LD, Schieve LA, Bradley C, DiGuiseppi C, Moody E, Pandey J, Pretzel RE, Howard AG, Olshan AF, Pence BW, Daniels J: Associations between parental broader autism phenotype and child autism spectrum disorder phenotype in the Study to Explore Early Development. Autism 2018.
Schieve LA, Drews-Botsch C, Harris S, Newschaffer C, Daniels J, DiGuiseppi C, Croen LA, Windham GC: Maternal and paternal infertility disorders and treatments and autism spectrum disorder: Findings from the study to explore early development. J Autism Dev Disord 2017;47:3994-4005.
Schieve LA, Tian L, Dowling N, Croen L, Hoover-Fong J, Alexander A, Shapira SK: Associations between the 2nd to 4th digit ratio and autism spectrum disorder in population-based samples of boys and girls: Findings from the Study to Explore Early Development. J Autism Dev Disord 2018.
Schieve LA, Tian LH, Drews-Botsch C, Windham GC, Newschaffer C, Daniels JL, Lee LC, Croen LA, Fallin MD: Autism spectrum disorder and birth spacing: Findings from the study to explore early development (SEED). Autism Res 2017.
Singer AB, Aylsworth AS, Cordero C, Croen LA, DiGuiseppi C, Fallin MD, Herring AH, Hooper SR, Pretzel RE, Schieve LA, Windham GC, Daniels JL: Prenatal alcohol exposure in relation to autism spectrum disorder: Findings from the study to explore early development (seed). Paediatr Perinat Epidemiol 2017.
Singer AB, Windham GC, Croen LA, Daniels JL, Lee BK, Qian Y, Schendel DE, Fallin MD, Burstyn I: Maternal exposure to occupational asthmagens during pregnancy and autism spectrum disorder in the Study to Explore Early Development. J Autism Dev Disord 2016.
Soke GN, Rosenberg SA, Hamman RF, Fingerlin T, Rosenberg CR, Carpenter L, Lee LC, Giarelli E, Wiggins LD, Durkin MS, Reynolds A, DiGuiseppi C: Factors associated with self-injurious behaviors in children with autism spectrum disorder: Findings from two large national samples. J Autism Dev Disord 2017b;47:285-296.
Soke GN, Rosenberg SA, Rosenberg CR, Vasa RA, Lee LC, DiGuiseppi C: Self-injurious behaviors in children with autism spectrum disorder enrolled in the Study to Explore Early Development. Autism 2017.
Wiggins LD, Barger B, Moody E, Soke G, Pandey J, Levy S: Brief report: The ADOS calibrated severity score best measures autism diagnostic symptom severity in pre-school children. J Autism Dev Disord 2017a.
Wiggins LD, Levy SE, Daniels J, Schieve L, Croen LA, DiGuiseppi C, Blaskey L, Giarelli E, Lee LC, Pinto-Martin J, Reynolds A, Rice C, Rosenberg CR, Thompson P, Yeargin-Allsopp M, Young L, Schendel D. Autism spectrum disorder symptoms among children enrolled in the Study to Explore Early Development (SEED). Journal of Autism and Developmental Disorders. June 2015.
Wiggins LD, Reynolds A, Rice CE, Moody EJ, Bernal P, Blaskey L, Rosenberg SA, Lee LC, Levy SE. Using standardized diagnostic instruments to classify children with autism in the Study to Explore Early Development. Journal of Autism and Developmental Disorders. October 2014.
Wiggins LD, Tian LH, Levy SE, Rice C, Lee LC, Schieve L, Pandey J, Daniels J, Blaskey L, Hepburn S, Landa R, Edmondson-Pretzel R, Thompson W: Homogeneous subgroups of young children with autism improve phenotypic characterization in the study to explore early development. J Autism Dev Disord 2017b.
Appendix iv: HRSA-Supported ASD Research Details
Number of Trainees by Fiscal Year and Grant Program | ||||||
---|---|---|---|---|---|---|
FY 2014 | FY 2015 | |||||
Trainee CategoryTrainee type |
FY 2014LEND |
FY 2014DBP |
FY 2014Total |
FY 2015LEND |
FY 2015DBP |
FY 2015Total |
Trainee typeShort term |
LEND12,547 |
DBP2,683 |
Total15,230 |
LEND12,547 |
DBP2,683 |
Total15,230 |
Trainee typeMedium term |
LEND3,703 |
DBP431 |
Total4,134 |
LEND3,196 |
DBP441 |
Total3,637 |
Trainee typeLong term |
LEND1,297 |
DBP48 |
Total1,345 |
LEND1,339 |
DBP50 |
Total1,389 |
Table 26. Number of HRSA-supported trainees by fiscal year and grant program. Source: Discretionary Grant Information System
Autism Intervention Research Network on Physical Health (AIR-P) Studies | ||
---|---|---|
Year Initiated | Study Title | Brief Description |
Year Initiated2016 |
Study TitleTwo-Phase Study of Probiotics for Quality of Life Through Gastrointestinal (GI) and Emotional Stability in Youth With ASD and Anxiety: Single-Site Pilot Trial Followed by 3-Site RCT |
Brief DescriptionThis study aimed to improve quality of life for children with ASD and their parents by exploring the microbiome-mental/physical function connection for ASD, GI dysfunction, and anxiety to potentially improve GI and emotional function. |
Year Initiated2016 |
Study TitleFirst Impressions: Strategies To Enhance Initial Adult Care Visits for Transitioning Youth With ASD |
Brief DescriptionThis study aimed to test an intervention designed to prepare youth and their families for the transition to adult care, increase the capacity of physicians and office staff in primary care adult clinics to welcome referred youth with ASD. The study also intended to establish a single point of contact in the adult primary care office by working with community health center pediatric and adult primary care clinics. |
Year Initiated2016 |
Study TitleA Novel Walking Route Pilot Program Aimed at Promoting Physical Activity in Children With Autism |
Brief DescriptionThis study aimed to increase physical activity levels among children with ASD by creating a walking route protocol for the children, determining the feasibility of using walking routes as a new physical activity opportunity, and determining the preliminary efficacy of walking routes for children with ASD who are obese. |
Year Initiated2016 |
Study TitleStudy of Oxytocin in ASD To Improve Reciprocal Social Behaviors |
Brief DescriptionThis study aimed to investigate the effects of intranasal oxytocin, a bone anabolic hormone, on bone mineral density (BMD) and structure in children with ASD by conducting BMD assessments. |
Year Initiated2016 |
Study TitleDevelopment of a Resiliency Program for Parents of Children With Autism Spectrum Disorder |
Brief DescriptionThis study aimed to implement a national parental resiliency program by refining the resiliency treatment program consisting of eight virtual 1-hour group sessions. |
Year Initiated2016 |
Study TitleClonidine and Trazodone for Sleep Disturbance in Children With ASD |
Brief DescriptionThis study aimed to evaluate the feasibility of conducting a large multisite trial of Clonidine and Trazodone for sleep disturbance to address the general lack of systematic data available to guide practitioners by testing the efficacy of Clonidine following a brief sleep hygiene intervention. |
Year Initiated2015 |
Study TitleExtension for Community Healthcare Outcomes (ECHO) Autism |
Brief DescriptionThis study aimed to increase provider knowledge, improve clinical practice, and enhance self-efficacy in the care of children with autism spectrum disorder (ASD) by assessing the impact of a collaborative telehealth intervention using ECHO technology with primary care providers. |
Year Initiated2015 |
Study TitleImproving Participation in Dental Care and Oral Health Outcomes for Underserved Children With ASD |
Brief DescriptionThis study aimed to improve home dental hygiene, oral health, and compliance with dental procedures in underserved populations with ASD by comparing the efficacy of the AIR-P Dental Toolkit with a combined regimen involving the toolkit and a parent-mediated behavioral intervention. |
Year Initiated2015 |
Study TitlePhysical Exercise To Reduce Anxiety in Underserved Children With ASD |
Brief DescriptionThis study aimed to provide critical insight into the feasibility and efficacy of a physical exercise intervention to reduce anxiety in children from underserved families and aid in the development of an evidence-based physical exercise intervention toolkit for the treatment of anxiety as well as other behaviors and improvement of physical health in children with ASD from underserved populations. |
Year Initiated2015 |
Study TitleExploration of the Development and Trajectory of Daily Living Skills in Children and Adolescents With Autism Spectrum Disorder |
Brief DescriptionThis study aimed to (1) explore the effects of demographic variables (e.g., age, gender, race, family size) and individual variables (i.e., IQ, ASD symptomatology, internalizing/externalizing symptoms, and language abilities) on the development of daily living skills as measured by the Vineland Adaptive Behavior Scales, 2nd Edition; (2) determine if there are subtypes of daily living skills in children and adolescents with ASD; and (3) explore the trajectory of daily living skills development over time using longitudinal data. |
Year Initiated2015 |
Study TitleExploration of the Relationship Between Race/Ethnicity and Behavioral Co-Morbidities and Medication Treatment in Children With Autism Spectrum Disorder |
Brief DescriptionThis secondary data analysis aimed to understand whether disparities in diagnosis and treatment of behavioral co-morbidities in children with ASD exist by exploring in a population of children with ASD the relationship among (1) race/ethnicity; (2) behavioral co-morbidities (attention deficit hyperactivity disorder [ADHD], anxiety, depression, aggression, and disrupted sleep); and (3) the use of medications for those co-morbidities. |
Year Initiated2015 |
Study TitleCharacterizing Underserved Populations Participating in the ATN: Evaluating Disparity Through Demographic Influences |
Brief DescriptionThis secondary data analysis of populations participating in the Autism Treatment Network (ATN) aimed to (1) understand the disparity of services found in ASD populations, including those with low socioeconomic status; (2) expand the ability to generalize the results; and (3) share the findings with clinicians, social workers, and the public, which would lead to earlier diagnosis and treatment of ASD by examining demographic factors found to affect the age of diagnosis. |
Year Initiated2014 |
Study TitleEffectiveness of Early Intensive Behavioral Intervention Services for Children With Autism Spectrum Disorders |
Brief DescriptionThis study aimed to identify variation in the receipt of early intensive behavioral intervention (EIBI) services for children with ASD in relation to the severity of the condition and other characteristics and to calculate qualit zadjusted life year gains for children with ASD from EIBI services. |
Year Initiated2014 |
Study TitleCommunication Deficits and the Motor System in ASD: Dissecting Patterns of Association and Dissociation Between Them |
Brief DescriptionThis study aimed to understand the relationship between motor, language, and social measures in individuals on the autism spectrum by exploring the ATN database. |
Year Initiated2014 |
Study TitleRelationship Between Subtypes of Restricted and Repetitive Behaviors and Sleep Disturbance in ASD |
Brief DescriptionThis study aimed to explore the relationship between insistence on sameness behaviors and repetitive sensory motor behaviors associated with sleep disturbance in individuals with ASD by examining factors related to immune markers and whole blood serotonin. The study also intended to determine how stress response, gastrointestinal disorders, immunity, and the serotonin system interact in ASD. |
Year Initiated2014 |
Study TitleBone Accrual Rates in Boys With Autism Spectrum Disorder |
Brief DescriptionThis study aimed to reexamine boys with ASD and controls from an earlier AIR‐P research study and evaluate changes in BMD over time and to examine volumetric BMD, microarchitecture, and strength estimates. |
Year Initiated2014 |
Study TitleExpanding Capacity of Primary Care To Care for Children With Autism Spectrum Disorder |
Brief DescriptionThis study aimed to incorporate an evidence‐supported toolkit and clinical pathway for identifying and managing associated physical problems for primary care clinicians by developing a system to support primary care clinicians in caring for children with ASD. |
Year Initiated2014 |
Study TitleImproving Hospitalizations for Children With ASD: Testing the Cost and Clinical Efficacy of Integrated Behavioral Intervention |
Brief DescriptionThis study aimed to implement and test a specific brief Applied Behavior Analysis model for assessing and responding to severe challenging behavior during acute medical and behavioral hospitalization for children with ASD. The study also intended to evaluate the impact of this program by conducting a randomized trial across both medical and psychiatric hospital settings to improve outcomes at the child (e.g., medical/behavioral needs); family (e.g., improved satisfaction with care); provider (e.g., improved morale and sense of efficacy in providing care); and system (e.g., diminished stays, dramatic reduction in costs and noncompensated care) levels. |
Year Initiated2012 |
Study TitleTreatment of Overweight Induced by Antipsychotic Medication in Young People With ASD |
Brief DescriptionThis double blind, placebo‐controlled randomized trial aimed to determine whether metformin can decrease weight gain among children with ASD on atypical antipsychotic medication. |
Table 27. Autism Intervention Research Network on Physical Health (AIR-P) studies.
AIR-P Tools and Guidelines | |
---|---|
Tool/Guideline Name | Brief Description |
Tool/Guideline NameEEG Guide for Parents |
Brief DescriptionParents and providers may have concerns or questions about how to help children with ASD successfully complete an EEG. Two toolkits (one for parents and one for providers) were made available to provide information about the EEG procedure, how a child's ASD diagnosis might affect his or her experience, and how to help children with ASD successfully prepare for and complete an EEG. |
Tool/Guideline NameEEG Guide for Providers |
Brief DescriptionParents and providers may have concerns or questions about how to help children with ASD successfully complete an EEG. Two toolkits (one for parents and one for providers) were made available to provide information about the EEG procedure, how a child's ASD diagnosis might impact his or her experience, and how to help children with ASD successfully prepare for and complete an EEG. |
Tool/Guideline NameGuideline on the treatment of irritability and problem behaviors |
Brief DescriptionThe combined AIR-P/ATN network developed systematic ways to assess and treat irritability and problem behaviors when they coexist with ASD. This guideline provides methods for managing this and other coexisting conditions for which management was previously highly variable or sporadic. This guidance is intended for parent and professional communities. |
Tool/Guideline NameGuideline on treatment of anxiety |
Brief DescriptionThe combined AIR-P/ATN network developed systematic ways to assess and treat coexisting conditions such as ASD and anxiety. This guideline provides methods for managing this and other coexisting conditions for which management was previously highly variable or sporadic. This guidance is intended for parent and professional communities. |
Tool/Guideline NameMelatonin and Sleep Problems: A Guide for Parents |
Brief DescriptionMelatonin is a common medicine a doctor or healthcare provider may suggest to help improve sleep. This toolkit provides parents with information about melatonin and helps parents decide if melatonin is right for their child. |
Tool/Guideline NamePuberty and Adolescence |
Brief DescriptionAll parents eventually face the challenge of teaching their children about the natural changes of puberty. However, parents of preteens with ASD may need the help of additional strategies to ease the transition. This tool provides guidance on the subject of puberty that can be directly applied to preteens with ASD. The tool aims to increase families' understanding of puberty and their ability to adapt to these changes with confidence. |
Table 28. AIR-P tools and guidelines.
Autism Intervention Research Network on Physical Health (AIR-P) Studies | ||
---|---|---|
Year Initiated | Study Title | Goal of Study |
Year Initiated2015 |
Study TitleMind the Gap |
Goal of StudyThis study aimed to address the critical need to increase access to care for underresourced children with ASD and their families by conducting several focus groups and interviews with parents of low-income, minority children with ASD across different sites (UCLA, UC Davis, U Penn, and U Rochester) to better understand challenges, barriers, and needs in the community. |
Year Initiated2015 |
Study TitleBuilding Better Bridges |
Goal of StudyThis study aimed to identify the barriers to successful transitions between educational systems for children with ASD by conducting focus groups and interviews with parents of children with ASD across different sites (UCLA, UC Davis, U Penn, and U Rochester) to identify transition barriers. The findings informed an intervention to improve transition outcomes for children with ASD and their families. |
Year Initiated2011 |
Study TitleRemaking Recess |
Goal of StudyRemaking Recess is an intervention that focuses on increasing social engagement between children with ASD (ages 5–11 years old) and their typical peers during the less structured times of the school day. Trained interventionists worked with school staff members (particularly the one-on-one aides) to employ strategies that aimed to increase the quantity and quality of peer engagement. |
Year Initiated2011 |
Study TitleTools for Teachers |
Goal of StudyThe STAT (Schedules, Tools, and Activities for Transitions in the Daily Routine) intervention was designed to improve behavior and transitions among students with ASD in special education classrooms by using behavioral strategies found in functional routines to address classroom management and environmental structures in these classrooms. |
Table 29. Autism Intervention Research Network on Behavioral Health (AIR-B) studies.
AIR-B Tools | |
---|---|
Tool Name | Description |
Tool NamePARTNER |
DescriptionThis tool consists of surveys to measure the impact of engagement on the interagency collaboration of community partners. |
Tool NamePlayground Observation of Peer Engagement |
DescriptionThis tool is an approach to coding and observing the way that children interact with each other on the playground. Using this measure, one can track a child’s engagement in activities, engagement with each other, and whether they initiated and responded to others. Use of this tool can help to determine the efficacy of interventions and areas where additional support is needed. |
Tool NameRemaking Recess Booklet |
DescriptionThis booklet was developed to improve the social inclusion of elementary school-aged children with ASD through facilitated interactions with their peers. This booklet provides school personnel with naturalistic strategies to use within their daily routine and during interactions with their students with ASD and their peers. |
Tool NameSocial Dynamics of Intervention |
DescriptionThis network tool explores the different networks and individuals supporting the student with ASD as they transition through school. |
Tool NameSocial Menus |
DescriptionSocial menus are an intervention tool created to generate conversations and increase engagement between children with ASD and their peers during lunch time at school. Much like “ice-breakers,” these menus are fun and interesting ways for children to connect with the students around them. |
Tool NameSocial Networks |
DescriptionThis tool is a measure of children’s interconnectivity in the classroom. Children are asked to name their closest friends and recall who hangs out with whom. This information is then used to track how well children integrate with their peers’ social structure, noting who is popular, who is isolated, and who is in between. |
Tool NameSTAT Manual |
DescriptionThis manual was developed to support the STAT program. The manual’s goal is to provide professionals with guidelines for assisting K–5 students with ASD in daily classroom routine transitions. |
Table 30. AIR-B tools.
Developmental Behavioral Pediatrics Research Network (DBPNet) Studies | ||
---|---|---|
Year Initiated | Study Title | Brief Description |
Year Initiated2018 planned |
Study TitleAutism Diagnostic Observation Schedule (ADOS) Study |
Brief DescriptionThis study aimed to identify when the ADOS is needed or not needed to enhance clinical decisionmaking regarding an ASD diagnosis. |
Year Initiated2018 planned |
Study TitleA Retrospective Description of the Effectiveness and Adverse Effects of Stimulants and Alpha-2 Agonists Used by Developmental-Behavioral Pediatricians for the Treatment of ADHD in Preschool Aged Children |
Brief DescriptionThe primary objectives of this study were to determine the percentage of preschool-aged children with ADHD who responded positively to stimulants and alpha-2 agonists (A2A) based on a review of data in the EHR and to determine if there was a difference in the positive response rate to these two classes of medication. The secondary objectives were to describe the type and frequency of adverse effects to stimulants and A2A when prescribed for the treatment of preschool-aged children for ADHD. |
Year Initiated2017 |
Study TitleEnhancing Care of Children With Complex Autism |
Brief DescriptionThis study aimed to assess the effect of an educational intervention on shared decisionmaking in the care of children with complex ASD. |
Year Initiated2015 |
Study TitleProject EARLY |
Brief DescriptionThis study aimed to determine if a family navigator could improve access to ASD diagnostic and treatment services (including early intervention services) and improve outcomes for children who screen positive for ASD at pediatric primary care centers serving low-income communities. |
Year Initiated2014 |
Study TitlePreliminary Validation of Selected Pediatric PROMIS Measures in Children With ASD |
Brief DescriptionThis study aimed to examine the validity of three NIH PROMIS measures (Stress Experiences, Family Involvement, and Peer Relationship) in children with ASD. |
Year Initiated2014 |
Study TitlePreliminary Validation of PROMIS Self-Report Measures of Peer Relationships and Psychological Stress in Youth With ASD |
Brief DescriptionThis study investigated the validity of two measures developed as part of NIH PROMIS when completed by youth aged 12–17 with ASD reading at a third grade level and by their parents. |
Year Initiated2013 |
Study TitleMaternal Immune Status and Autism Severity |
Brief DescriptionThis study investigated whether mothers of children with ASD have specific antibodies in their blood that predict the severity of ASD in their children. The study was conducted to determine if findings at one DBPNet site could be replicated at two other sites. |
Year Initiated2012 |
Study TitleExtracting Electronic Health Record (EHR) Data on Use of Psychotropic Medications in DBPNet: Costs, Feasibility, and Practice Variation |
Brief DescriptionThis study aimed to determine the feasibility of using EHR data for research on the clinical practices and variation in clinical practices across sites by extracting data on the diagnoses children received and the psychotropic medications prescribed at three DBPNet sites. |
Year Initiated2011 |
Study TitleDevelopmental-Behavioral Pediatrics Practice Variation in the Diagnosis and Treatment of ADHD and Autism |
Brief DescriptionThis study aimed to identify similarities and differences in the assessment and treatment of ADHD and ASD across sites. |
Year Initiated2011 |
Study TitleWhat Is the Scope of Practice for DBPs at Academic Medical Centers |
Brief DescriptionThis study aimed to identify the reasons that children are referred to developmental and behavioral pediatricians (DBPs). |
Table 31. Developmental Behavioral Pediatrics Research Network (DBPNet) studies.
Healthy Weight Research Network (HWRN) Studies | ||
---|---|---|
Year Initiated | Study Title | Goal of Study |
Year Initiated2017 |
Study TitleTrajectory of Body Mass Index in Children With Autism Spectrum Disorders: A Follow-Up to a Feeding Intervention |
Goal of StudyThis project followed up with participants from a randomized controlled (wait-list) trial on parent training for feeding, in which 42 parents of children with ASD aged 2–7 learned behavioral strategies to increase their children's acceptance of new foods, improve their children's behavior during meals, and teach self-help skills related to meals. |
Year Initiated2017 |
Study TitleExploring Physical Activity Among Preschoolers With Developmental Delay and Autism |
Goal of StudyThis study aimed to (1) develop a reliable observational instrument to measure the PA of preschoolers with developmental delay (2) describe the PA behaviors of preschoolers with DD in the preschool setting; and (3) identify associations between the PA behaviors of preschoolers with DD and features of the social and physical environment within the preschool setting. |
Year Initiated2017 |
Study TitleDoes Food Addiction Mediate the Relationship Between BMI and Autism Spectrum Disorder? |
Goal of StudyThis study sought to identify possible psychological mechanisms underpinning overeating and its links to increased body mass index (BMI) in children with ASD. |
Year Initiated2017 |
Study TitleFacilitating Management of Overweight and Obesity in Children With Autism in Primary Care |
Goal of StudyThis project sought to provide an in-depth understanding of the potential barriers and facilitators to the successful implementation of guideline-recommended care or interventions for children with ASD. |
Year Initiated2017 |
Study TitleHow Concerned Are Parents About Obesity in Their Children With ASD? (working title) |
Goal of StudyThis study aimed to use newly released data from the 2016 National Survey of Children's Health to update obesity prevalence estimates and explore how parental concern may differ between parents of children with and without ASD. |
Year Initiated2016 |
Study TitleHWRN Research Agenda Survey |
Goal of StudyA survey was developed to obtain input on the HWRN research agenda. The survey was disseminated to HWRN members, associate members, newsletter subscribers, and through community networks. |
Year Initiated2015 |
Study TitleDiet Quality, Parental Perceptions and Weight Gain Among Adolescents With Intellectual and Developmental Disabilities |
Goal of StudyThis study aimed to identify important predictors of diet quality among adolescents with IDDs enrolled in an ongoing treatment trial. Funding from HWRN allowed the team to leverage a larger NIH-funded study to obtain data on key variables hypothesized to play important roles in influencing diet quality and weight loss for adolescents with an IDD. |
Year Initiated2015 |
Study TitleAn Adaptive Research Design to Optimize Weight Management Intervention in Young Children |
Goal of StudyThis study aimed to determine the impact of a pilot adaptive weight management intervention on health outcomes for families of 4- to 8-year-olds with ASD and overweight, and to evaluate the acceptability and feasibility of the intervention. |
Year Initiated2015 |
Study TitleUsing Dance to Promote Fitness and Well-Being in Adolescent Girls With Intellectual Disabilities |
Goal of StudyThis pilot study tested the feasibility of a 10-week dance intervention for 16–20 adolescent girls with IDs that included group dance classes held at a YMCA and an at-home practice component. Changes in cardiorespiratory fitness and participants' physical self-perception were evaluated. |
Year Initiated2015 |
Study TitleContextual Correlates of Regular Physical Activity (PA) in Children With and Without Intellectual Disability (ID) |
Goal of StudyResearchers conducted an exploratory secondary data analysis using data from the National Center for Health Statistics of the PA of youth with and without IDs. |
Year Initiated2015 |
Study TitleThe Effect of Age on the Prevalence of Obesity Among US Youth With Autism Spectrum Disorder |
Goal of StudyThis study sought to assess the association between age and the prevalence of obesity among children with and without ASD in the 2011–2012 National Survey of Children's Health. |
Year Initiated2015 |
Study TitleManagement of Overweight and Obesity in Children With Autism Spectrum Disorders by Developmental and Behavioral Pediatricians |
Goal of StudyThis project aimed to understand how developmental pediatricians viewed obesity in the population of children with ASD/DDs. Using electronic medical records available from three DBP practices in DBPNet, the study examined the prevalence of obesity in children with ASD/DDs and determine the extent to which this problem is identified by DBPs. Factors associated with providers' identification of obesity were examined. |
Year Initiated2014 |
Study TitleBecoming Obese: The Incidence of Obesity in Early Elementary Grade Schoolchildren With Autism Spectrum Disorder (working title) |
Goal of StudyThis study sought to compare incidence of obesity between children with and without ASD in second grade and third grade using data from the Early Childhood Longitudinal Study-Kindergarten cohort. |
Year Initiated2014 |
Study TitleFamily-Based Weight Loss Treatment for ASD (FBT-ASD) |
Goal of StudyThis project implemented a weight-loss treatment that combines parenting skills and weight-loss strategies tailored for parents of overweight and obese children ages 5–13 with a diagnosis of ASD. |
Year Initiated2014 |
Study TitlePromotion of Physical Activity in Adolescents With Intellectual and Developmental Disabilities |
Goal of StudyThis 12-week pilot study explored using technology to deliver a physical activity program to 30 adolescents with intellectual and developmental disabilities (IDDs) using video conferencing via tablet computer. |
Year Initiated2014 |
Study TitleIntellectual Disability Is Associated With Increased Risk for Obesity in a Nationally Representative Sample of US Children |
Goal of StudyThis study sought to determine the prevalence of obesity in children aged 10–17 with IDs in comparison to children without an ID in the U.S. population. The study also compared family meal frequency, physical activity, and sedentary behavior of those with and without and IDs. |
Year Initiated2013 |
Study TitleInfluence of Race/Ethnicity and Sex on Food Selectivity Among Children With Intellectual Disabilities (ID) |
Goal of StudySelective eating is linked to poor nutrient intake and may put children at increased risk of adult chronic disease. Research has suggested that children with developmental disabilities (DDs) are more food selective than typically developing children, but race/ethnicity and sex differences have not been explored. Therefore, this study examined food selectivity in a diverse community-based convenience sample of children with IDs aged 3–8 years. |
Table 32. Healthy Weight Research Network (HWRN) studies.
HWRN Tools and Guidelines | |
---|---|
Tool Name | Description |
Tool Name"Let's Go" toolkits by Maine Medical Center and HWRN |
DescriptionThese toolkits support professionals who work with children with IDs and DDs. The objective of these toolkits is to provide resources for creating opportunities for all children to lead healthy lives. The toolkits aim to increase healthy eating and physical activity and decrease the risk of obesity among children with these disabilities. |
Tool NameAssessing Community Satisfaction With Community Based Participatory Research |
DescriptionThis survey assesses the satisfaction of HWRN Advisory Board members and conference participants with their level of their engagement in projects about children and families with disabilities. |
Tool NameExpert Panel Recommendations on Obesity Management by Primary Care Providers for Children With ASD |
DescriptionThe expert panel prepared the first set of recommendations on obesity management in children with ASD for dissemination to the public. |
Tool NameMeasure of Adaptive Behaviors Surrounding Eating |
DescriptionThis tool is used by clinicians and researchers to assess adolescents' ability to engage in behaviors such as assisting with meal preparation and feeding themselves. These questions respond to a lack of appropriate existing measures to assess engagement in adaptive behaviors surrounding eating. Although this new adaptive eating behaviors measure is not fully validated, it provides a useful tool for research and clinical communities interested in assessing adaptive behaviors surrounding eating. |
Tool NameNutrition Education Workshops for Adults With Disabilities |
DescriptionThis manualized series of 11 workshops is a 6-month interactive curriculum for people with DDs and their care providers. Its development was supported in part by a 2014 grant from the National Institutes of Health. |
Tool NamePositive Health Practices Curriculum for Adults With Developmental Disabilities |
DescriptionThis manualized intervention—available in paper and web-based formats—promotes healthy eating and physical activity for adults with disabilities. Its development was sponsored in part in 2015 by the Pennsylvania Office of Developmental Programs' Department of Public Welfare. |
Tool NameStrategies to Optimize Healthy Eating on a Low Budget |
DescriptionThis tool was developed for people on a limited food budget to assist in buying and preparing healthy food. Because many people with disabilities have modest incomes, the tool provided information on how they and their families can navigate this difficult subject. |
Tool NameVideo Sports Illustrated for Children With Disabilities |
DescriptionThis interactive tool shows a video of children with disabilities playing half a dozen sports: baseball, soccer, swimming, track and field, basketball, and Wii-sports. Children who watch the video have the opportunity to describe their level of enthusiasm for each sport. At the end, they list their two favorite sports. Because the tool is visual rather than verbal, it is most appropriate for children with disabilities who have communication difficulties. |
Table 33. HWRN tools and guidelines.
Healthy Weight Research Network (HWRN) Studies | ||
---|---|---|
Year Initiated | Study Title | Goal of Study |
Year Initiated2017 |
Study TitleCollaborative Improvement Network for Transition in Residency Training |
Goal of StudyMedicine-Pediatrics residency training programs will be recruited for a collaborative improvement network to conduct rapid cycle improvement tests to refine and optimize the process of implementing the Health Care Transition Curriculum for Primary Care Residents. |
Year Initiated2016 |
Study TitleA National Research Agenda for the Transition of Youth With Autism |
Goal of StudyA Delphi survey was distributed to HCT-RN Advisory Board members that asked them to rate lists of research topics according to perceived importance. Participants asked to provide their ratings in multiple phases because the list of topics presented was refined over the course of each round of participant ratings. The top-rated research topics set the official HCT-RN research agenda. |
Year Initiated2015 |
Study TitleStakeholder Perspectives on Research and Practice in Autism and Transition |
Goal of StudyThis study aimed to identify gaps in current research and practice, as well as current research infrastructure needs. Key-informant interviews were conducted with researchers, professionals/clinicians, young adults with ASD, and parents of young adults with ASD. |
Year Initiated2015 |
Study TitleA Health Care Transition Curriculum for Primary Care Residents: Identifying Goals and Objectives |
Goal of StudyMedical professionals with expertise in healthcare transition were recruited to participate in a survey to assist in the development of a healthcare transition curriculum for primary care physicians using a modified Delphi process to determine curricular goals and objectives, feasibility of developing activities for objectives, and appropriateness of objectives for specified learners. |
Table 34. Health Care Transitions Research Network (HCT-RN) studies
HWRN Tools and Guidelines | |
---|---|
Tool Name | Description |
Tool/Guideline NameMedical Summary for Young Adults With Intellectual Disabilities or Developmental Disabilities (Essential Clinical Information) |
Brief DescriptionThis summary of key medical record elements contains essential, disease-specific information needed for communication between pediatric and adult clinicians. This record is to be completed by the pediatric or other sending clinician, shared with the youth and family, and then sent to the receiving adult clinician. |
Tool/Guideline NameSelf-Care Assessment for Parents and Caregivers of Young Adults With Intellectual Disabilities or Developmental Disabilities |
Brief DescriptionThis assessment tool is filled out by the parent and/or caregiver of the youth with IDs and used by the adult care team to assess any remaining gaps in self-care knowledge and skills or additional issues that must be addressed to ensure optimal management of the medical condition(s). |
Tool/Guideline NameSelf-Care Assessment for Young Adults With Intellectual Disabilities or Developmental Disabilities |
Brief DescriptionThis assessment tool, written at a fourth grade literacy level, is to be filled out by the youth with IDs and used by the adult care team to assess any remaining gaps in self-care knowledge and skills or additional issues that must be addressed to ensure optimal management of the medical condition(s). |
Tool/Guideline NameTransition Care Guideline |
Brief DescriptionConsensus-building activities to establish transition care guidelines occurred during the HCT-RN Design Meeting through the designated Quality Improvement and Practice work group. The HCT-RN developed transition care guidelines in collaboration with key stakeholders as part of the network's overall mission to promote best practices in healthcare transitions in national professional organizations for physicians. |
Tool/Guideline NameTransition Readiness Assessment for Parents and Caregivers of Youth With Intellectual Disabilities or Developmental Disabilities (Pediatric) |
Brief DescriptionThis assessment tool is filled out by parents and/or caregivers of the youth with IDs and then used by the pediatric or clinical care team to facilitate conversation about the youth's needs for management of his/her health and healthcare. This tool indicates the elements related to the clinical condition that should be assessed and documented by the transferring pediatric practice. |
Tool/Guideline NameTransition Readiness Assessment for Youth With Intellectual Disabilities or Developmental Disabilities (Pediatric) |
Brief DescriptionThis assessment tool is filled out by the youth with intellectual disabilities (IDs) and then used by the pediatric or clinical care team to facilitate conversation about the youth's knowledge and skill needs for management of his/her health and healthcare. This tool is written at a fourth grade literacy level and indicates the elements related to the clinical condition that should be assessed and documented by the transferring pediatric practice. |
Table 35. HCT-RN tools and guidelines.
Field-Initiated Innovative Research Program (FIRST) Studies | ||
---|---|---|
Year Initiated | Study Title | Brief Description |
Year Initiated2014 |
Study TitleComparative Efficacy of a Self-Directed and Therapist-Assisted Telehealth Parent Training Intervention for Children With ASD |
Brief DescriptionThis study aimed to examine the effect of ImPACT Online—a novel, telehealth parent-mediated intervention for children with ASD—on parent and child outcomes to identify moderators and mediators of treatment response and to identify predictors of parent adherence to the program. |
Year Initiated2014 |
Study TitleA Controlled Trial of Sertraline in Young Children with ASD |
Brief DescriptionThis study aimed to assess the effects of sertraline treatment in children with ASD aged 24–72 months. |
Year Initiated2014 |
Study TitleScreening and Linkage to Services for Autism (SaLSA) |
Brief DescriptionThe overall goal of SaLSA was to test the effectiveness and feasibility of patient navigation to facilitate screening follow-up and referral, diagnostic evaluation, and linkage to services in young minority and disadvantaged populations. |
Year Initiated2014 |
Study TitleParent Mediated Interventions in Autism: The Search for Meaningful Outcomes |
Brief DescriptionThis study aimed to partner with families to redefine "success" in parent-mediated interventions with very young children with ASD. The goal of the study was for parents and families to influence clinical practice and intervention outcomes research. |
Year Initiated2014 |
Study TitleInvestigation of Teacher-Mediated Toilet Training Using a Manualized Moisture Alarm Intervention |
Brief DescriptionThe purpose of this study was to develop a teacher-mediated model of toileting instruction for children with ASD in school settings that incorporates an innovative, manualized moisture pager intervention and compare its efficacy with a standard behavioral treatment. |
Year Initiated2014 |
Study TitleDoes Mindfulness Training Enhance Early Evidence-Based Parent-Coaching Interventions? |
Brief DescriptionThis study aimed to develop a novel treatment paradigm that could significantly increase the efficacy of parent training programs and positively impact children, caregivers, and families in both the short term and long term. |
Year Initiated2014 |
Study TitleComprehensive Communication Intervention for Minimally Verbal Children With Autism |
Brief DescriptionThis study built on the existing Joint Attention, Structured Play, Engagement and Regulation and Enhanced Milieu Teaching (JASP-EMT) intervention to test the effectiveness of a comprehensive communication intervention (i.e., JASP-EMT-Plus, or JEP), which includes a direct teaching component to improve spoken language and social communication, and to reduce the proportion of children with ASD who are minimally verbal at age 5. |
Year Initiated2013 |
Study TitleImproving Part C Services and Outcomes for Underserved Children With ASD |
Brief DescriptionThis study aimed to increase Part C practitioners' implementation of EIBI practices. Providers were trained with a professional development program to improve caregiver-child engagement outcomes and improve child social and communication outcomes. |
Year Initiated2013 |
Study TitleAddressing Health Disparities in Autism Diagnosis, Service Utilization, and School Engagement Among Young Children Living in the Circle of Promise |
Brief DescriptionThe goal of this intervention was to increase ASD diagnosis and reduce disparities in diagnosis and service-use outcomes by providing universal access to the diagnostic process to all EI-enrolled children in Boston's Circle of Promise. |
Year Initiated2013 |
Study TitleToddlers and Families Together: Addressing Early Core Features of Autism |
Brief DescriptionThe goal of the study was to test the efficacy of a group-based intervention, Toddlers and Families Together (Together), for families of young children with or suspected of having ASD. The intervention targeted behavior regulation, joint attention, and play to improve maternal health and child developmental outcomes. |
Table 36. Field-Initiated Innovative Research Program (FIRST) studies.
Secondary Data Analysis Research Program (SDAR) Studies | ||
---|---|---|
Year Initiated | Study Title | Brief Description |
Year Initiated2015 |
Study TitleMedical Care Utilization and Costs Among Transition-Age Young Adult Medicare Beneficiaries With Autism Spectrum Disorder |
Brief DescriptionThis study examined healthcare use and costs associated with medical care among transition-aged young adults with ASD who were moving from pediatric to adult care providers. The study also analyzed racial and ethnic differences in utilization and potential disparities between young adults with ASD and young adults with other IDs. |
Year Initiated2015 |
Study TitleRacial and Ethnic Disparities in Autism Diagnosis and Educational Therapy Utilization: Quantifying the Contribution of Modifiable Mediators |
Brief DescriptionThe purpose of the study was to advance understanding of the composition of racial and ethnic disparities in ASD diagnosis and treatment among children using the framework and methods put forth in the Institute of Medicine's 2003 report Unequal Treatment. The study aimed to determine the extent to which geography contributes to racial and ethnic disparities in ASD diagnosis and treatment. |
Year Initiated2015 |
Study TitleFamily Adversity and Health Disparities for Young Children With Autism |
Brief DescriptionThis study aimed to examine whether racial and ethnic disparities in timing and receipt of diagnosis and treatment for children with ASD vary based upon adverse family experiences. |
Year Initiated2014 |
Study TitleRacial and Ethnic Disparities in Diagnostic and Health Services of Children With Developmental Disabilities |
Brief DescriptionThis study assessed whether there were significant differences in pathways to diagnosis, early service utilization, and care among racial and ethnic minority children with ASD/DDs. Informed by Goldberg and Huxley's pathway to care model, this study examined several stages of help seeking, including parental perceptions of problems, use of primary care services, recognition within primary care, and referral to or use of specialty care services among children with ASD/DDs. |
Year Initiated2014 |
Study TitleMaking a More Effective and Efficient SCQ |
Brief DescriptionThe purpose of the study was to develop a more effective and more efficient Social Communication Questionnaire (SCQ) as a screening instrument for early identification of ASD. The revised version of the SCQ addresses measurement bias according to age, gender, and ethnic group, as appropriate. |
Year Initiated2014 |
Study TitlePeer-Victimization of Adolescents With ASD: Filling the Knowledge Gaps to Create Anti-Bullying Interventions |
Brief DescriptionThis study aimed to examine peer victimization in adolescents with ASD who spend most of the day in a regular education setting. The study examined relationships between peer victimization and both academic outcomes and ASD symptoms. |
Year Initiated2014 |
Study TitleTough Choices: Autism, Private Health Insurance and Family Out-of-Pocket |
Brief DescriptionThe purpose of this study was to develop firmer evidence about the relationships between private health insurance plans and family needs. The researchers hypothesized that families value low-deductible plans, and that low-deductible plans expose families to unanticipated expenditures. |
Year Initiated2014 |
Study TitlePatterns and Variations in Emergency Department Visits for U.S. Children With Autism: A Rural-Urban Comparison |
Brief DescriptionThe purpose of this study was to determine whether disparities in emergency department utilization exist between children with ASD in rural versus urban settings. |
Year Initiated2013 |
Study TitleA Longitudinal Analysis of Maternal Depression and Its Associations With Child Obesity and Health Care Use |
Brief DescriptionThis was one of the first U.S. studies to longitudinally examine the associations between maternal depression, child obesity, the moderating effect of children's healthcare use, and the mediating effect of parenting behaviors using a nationally representative sample. |
Year Initiated2013 |
Study TitleTrends in Racial and Ethnic Health Care Disparities for Children With Autism/DD |
Brief DescriptionThis study examined whether racial and ethnic disparities in healthcare quality, access, and utilization for children with ASD/DDs have diminished over time. The study examined longitudinal population trends and correlates of disparities between Black, Latino, and White children with ASD/DDs. |
Year Initiated2013 |
Study TitleAccess to Therapy for Children With Autism: A Population-Based Analysis |
Brief DescriptionThe purpose of this study was to examine access to therapy services among children with ASD before and after the implementation of the Combating Autism Act of 2006. |
Year Initiated2013 |
Study TitleDental Homes for Medicaid-Enrolled Children With ASD in the Iowa I-Smile Program |
Brief DescriptionThis study compared dental home and preventive dental care utilization rates for Medicaid-enrolled children by ASD status, examined the factors associated with having a dental medical home, and assessed the outcomes of having a medical home—specifically, the use of an emergency department for nontraumatic dental problems and the use of the operating room for dental treatment under anesthesia. |
Table 37. Secondary Data Analysis Research Program (SDAR) studies.
Autism Longitudinal Data Project | ||
---|---|---|
Year Initiated | Study Title | Brief Description |
Year Initiated2017 |
Study TitleAutism Longitudinal Data Project |
Brief DescriptionThis project leverages the 20 year Boston Birth Cohort to examine the role of maternal and cord blood metabolomes, placental histological findings, and in utero fetal growth patterns in relation to the risk of ASD; and integrate multidimensional data to develop early prediction models and test interventions using both empirical data and virtual birth cohort. |
Table 38. Autism Longitudinal Data Project.
Autism Transitions Research Project (ATRP) | ||
---|---|---|
Year Initiated | Study Title | Brief Description |
Year Initiated2017 |
Study TitleFactors Associated with Healthy Life Outcomes and Access to Needed Services among Transition Age Youth |
Brief DescriptionSecondary data analysis using Social Security Administration and the Vocational Rehabilitation system as well as national surveys of Social Security beneficiaries, college students and recipients of services via State Developmental Disabilities agencies. Aims are to describe changes over time in the size, demographics, health and disability characteristics (i.e. needs), access to services and related life outcomes, and to describe the distribution and correlates of access to services and related life outcomes. |
Year Initiated2017 |
Study TitleService Network Coordination and Social Capital |
Brief DescriptionMixed methods approach to adapt a method to measure transition-aged youth and adolescents (TAYA) social capital and the coordination of intervention team members. The aims are to adapt a measure of social capital for the postsecondary transition, and to pilot test the adapted social capital measure with TAYA, their parents and transition coordinators before and after high school leaving. |
Year Initiated2017 |
Study TitleTransition Odyssey |
Brief DescriptionTo develop and pilot test a scalable interview protocol to understand TAYA, family and provider insights about the transition process, the genesis of disparities and factors that influence outcomes. The aims are to understand the unique transition-related service access experiences of TAYA, and to understand participant perspectives about what constitutes healthy life outcomes. |
Table 39. Autism Transitions Research Project (ATRP).
State Implementation, Planning, and Innovation in Care Integration Grants | ||
---|---|---|
Period of Performance | State | Grantee |
2013 Planning Grants | ||
Period of Performance9/1/2013–8/31/2016 |
StateNH |
GranteeNew Hampshire Department of Health And Human Services |
Period of Performance9/1/2013–8/31/2016 |
StateAR |
GranteeUniversity of Arkansas |
Period of Performance9/1/2013–8/31/2016 |
StateMA |
GranteeUniversity of Massachusetts |
Period of Performance9/1/2013–8/31/2016 |
StateTX |
GranteeUniversity of Texas Health Science Center Houston |
Implementation Grants | ||
Period of Performance9/1/2013–8/31/2016 |
StateNC |
GranteeUniversity of North Carolina At Chapel Hill |
Period of Performance9/1/2013–8/31/2016 |
StateMD |
GranteeParents' Place of Maryland |
Period of Performance9/1/2013–8/31/2016 |
StateOR |
GranteeOregon Health & Science University |
Period of Performance9/1/2013–8/31/2016 |
StateVA |
GranteeVirginia Commonwealth University |
Period of Performance9/1/2014–8/31/2016 |
StateGA |
GranteeGeorgia State University Research Foundation |
Period of Performance9/1/2014–8/31/2016 |
StateAR |
GranteeArkansas Children's Hospital Research Institute |
Period of Performance9/1/2014–8/31/2016 |
StateIA |
GranteeUniversity of Iowa—School of Medicine |
Period of Performance9/1/2014–8/31/2016 |
StateMI |
GranteeMichigan Department of Community Health |
Period of Performance9/1/2014–8/31/2016 |
StateMN |
GranteeDepartment of Health Minnesota |
Innovation in Care Integration Grants for Children and Youth With Autism Spectrum Disorders and Other Developmental Disabilities |
||
Period of Performance9/1/2016–8/31/2019 |
StateWA |
GranteeWashington State Department of Health |
Period of Performance9/1/2016–8/31/2019 |
StateDE |
GranteeUniversity of Delaware |
Period of Performance9/1/2016–8/31/2019 |
StateRI |
GranteeThe Autism Project |
Period of Performance9/1/2016–8/31/2019 |
StateWI |
GranteeUniversity of Wisconsin System |
Table 40. State Implementation, Planning, and Innovation in Care Integration Grants
Appendix v: Selected NIH- and EPASupported UC Davis Center for Children's Environmental Health (CCEH) Publications
Edmiston E, Jones KL, Vu T, Ashwood P, Van de Water J. Identification of the antigenic epitopes of maternal autoantibodies in autism spectrum disorders. Brain Behav Immun. 2018 Mar;69:399-407. [PMID: 29289663]
Goodrich AJ, Volk HE, Tancredi DJ, McConnell R, Lurmann FW, Hansen RL, Schmidt RJ. Joint effects of prenatal air pollutant exposure and maternal folic acid supplementation on risk of autism spectrum disorder. Autism Res. 2018 Jan;11(1):69-80. [PMID: 29120534]
Hertz-Picciotto I, Schmidt RJ, Krakowiak P. Understanding environmental contributions to autism: Causal concepts and the state of science. Autism Res. 2018 Apr;11(4):554-586. [PMID: 29573218]
Jones KL, Croen LA, Yoshida CK, Heuer L, Hansen R, Zerbo O, DeLorenze GN, Kharrazi M, Yolken R, Ashwood P, Van de Water J. Autism with intellectual disability is associated with increased levels of maternal cytokines and chemokines during gestation. Mol Psychiatry. 2017 Feb;22(2):273-279. [PMID: 27217154]
Jones KL, Pride MC, Edmiston E, Yang M, Silverman JL, Crawley JN, Van de Water J. Autism-specific maternal autoantibodies produce behavioral abnormalities in an endogenous antigen-driven mouse model of autism. Mol Psychiatry. 2018 Jun 28. [PMID: 29955164]
Jones KL, Van de Water J. Maternal autoantibody related autism: mechanisms and pathways. Mol Psychiatry. 2018 Jun 22. [PMID: 29934547]
Kerin T, Volk H, Li W, Lurmann F, Eckel S, McConnell R, Hertz-Picciotto I. Association Between Air Pollution Exposure, Cognitive and Adaptive Function, and ASD Severity Among Children with Autism Spectrum Disorder. J Autism Dev Disord. 2018 Jan;48(1):137-150. [PMID: 28921105]
Kim D, Volk H, Girirajan S, Pendergrass S, Hall MA, Verma SS, Schmidt RJ, Hansen RL, Ghosh D, Ludena-Rodriguez Y, Kim K, Ritchie MD, Hertz-Picciotto I, Selleck SB. The joint effect of air pollution exposure and copy number variation on risk for autism. Autism Res. 2017 Sep;10(9):1470-1480. [PMID: 28448694]
Krakowiak P, Walker CK, Tancredi D, Hertz-Picciotto I, Van de Water J. Autism-specific maternal anti-fetal brain autoantibodies are associated with metabolic conditions. Autism Res. 2017 Jan;10(1):89-98. [PMID: 27312731]
Rose DR, Yang H, Serena G, Sturgeon C, Ma B, Careaga M, Hughes HK, Angkustsiri K, Rose M, Hertz-Picciotto I, Van de Water J, Hansen RL, Ravel J, Fasano A, Ashwood P. Differential immune responses and microbiota profiles in children with autism spectrum disorders and co-morbid gastrointestinal symptoms. Brain Behav Immun. 2018 May;70:354-368. [PMID: 29571898]
Schmidt RJ, Kogan V, Shelton JF, Delwiche L, Hansen RL, Ozonoff S, Ma CC, McCanlies EC, Bennett DH, Hertz-Picciotto I, Tancredi DJ, Volk HE. Combined Prenatal Pesticide Exposure and Folic Acid Intake in Relation to Autism Spectrum Disorder. Environ Health Perspect. 2017 Sep 8;125(9):097007. [PMID: 28934093]
Schmidt RJ, Schroeder DI, Crary-Dooley FK, Barkoski JM, Tancredi DJ, Walker CK, Ozonoff S, Hertz-Picciotto I, LaSalle JM. Self-reported pregnancy exposures and placental DNA methylation in the MARBLES prospective autism sibling study. Environ Epigenet. 2016 Dec;2(4). pii: dvw024. [PMID: 28781890]
Schroeder DI, Schmidt RJ, Crary-Dooley FK, Walker CK, Ozonoff S, Tancredi DJ, Hertz-Picciotto I, LaSalle JM. Placental methylome analysis from a prospective autism study. Mol Autism. 2016 Dec 15;7:51. [PMID: 28018572]
Cover Design
Medical Arts Branch, Office of Research Services, National Institutes of Health
Copyright Information
This report is a Work of the United States Government. A suggested citation follows.
Suggested Citation
U.S. Department of Health and Human Services, National Institutes of Health, Office of Autism Research Coordination (On behalf of the Office of the Secretary). Report to Congress on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities, under the Autism Collaboration, Accountability, Research, Education and Support (Autism CARES) Act of 2014. March 2019. Retrieved from the U.S. Department of Health and Human Services Interagency Autism Coordinating Committee website: https://iacc.hhs.gov/publications/report-to-congress/2018/.