ARRA IMPACT REPORT:
Autism Spectrum Disorder – Other Surveillance & Infrastructure Needs


Public Health Burden
Current estimates suggest that autism spectrum disorder (ASD) affects as many as 1 in 88 U.S. children.1 ASD is associated with a wide range of developmental issues, but the core symptoms are problems with social interactions and communication skills, as well as repetitive and stereotyped behaviors. Symptoms usually appear before age three, and can cause delays or problems that develop from infancy to adulthood.

Surveillance and Health Outcomes
ASD surveillance provides important estimates of the number of children affected with ASD, and helps describe the characteristics of people with ASD in the general population. Surveillance entails obtaining accurate information about rates and resources, and determining the clinical outcomes of individuals who receive ASD services. The following ARRA-funded projects are examples of this work.

  • Comparing Populations: Using data from the Childhood Autism Risk from Genes and Environment (CHARGE) study, University of California, Davis investigators compared ASD features of Hispanic and non-Hispanic children who had been diagnosed with the disorder. A comparison of diagnostic scores, regressive status, language function, and overall function did not reveal any significant differences between these groups, suggesting that ASD profiles are similar across these populations.2
  • Alternative Health Measures to Guide Clinical Decision Making: Evaluating Quality Another research group at Arkansas Children’s Hospital Research Institute evaluated alternative health measures for children with ASD and their caregivers, including quality adjusted life years, which is an estimate of the number of years added to a patient's life by a specific therapeutic intervention and adjusted for quality of life. The investigators examined the benefits of including such measures in to help guide clinical decision making and ultimately proposed including the Health Utilities Index for use in ASD cost-effectiveness evaluations as a way to improve surveillance.3

Training
Adequate scientific and educational workforces are essential infrastructure for conducting the next generation of ASD research. The following ARRA-supported projects will help increase research training, as well as school-based services, focused on ASD.

  • ASD Services Research & Medicaid: Supplemental ARRA funding to the University of Pennsylvania enabled the hiring of postdoctoral fellows who received extensive methodological and content training in ASD services research, particularly with regard to the role of Medicaid in funding these services.4
  • Genetic and Environmental Risk Factors: ARRA funding enabled the establishment of a dedicated ASD research program at the University of Southern California focused on genetic and environmental risk factors for ASD, including support to hire two new tenure-track faculty members.5
  • Improving School-based Services: Another ARRA project at the University of Kentucky is evaluating the effectiveness of three types of professional development models for improving student and teacher outcomes in community-based public school programs. The goal is to find the best way to improve school-based services for children with ASD.6

Data Sharing
Data sharing is an essential aspect of the ASD research infrastructure that allows investigators to: validate the research results of other investigators; pool standardized information collected by many different researchers to facilitate rapid progress; and, use data collected by others to explore hypotheses not considered by the original investigators.

Partnership to Enhance ASD Dataset Sharing: ARRA funding has advanced the development of an informatics pipeline, enabling Autism Speaks Inc.’s Autism Genetic Resource Exchange and Autism Tissue Program to share data with the NIH National Database for Autism Research (NDAR). The partnership between NDAR and Autism Speaks created greater access to one of the largest repositories of genetic, phenotypic, clinical, and medical imaging data collected from individuals with ASD, making comprehensive datasets available to a larger community of ASD researchers.7,8

Contributing NIH Institutes & Centers

  • National Institute of Environmental Health Sciences (NIEHS)
  • National Institute of Mental Health (NIMH)

  1. http://www.ncbi.nlm.nih.gov/pubmed/22456193
  2. 3R01ES015359-03S2, http://www.ncbi.nlm.nih.gov/pubmed/22399446 - HERTZ-PICCIOTTO, IRVA - UNIVERSITY OF CALIFORNIA DAVIS - DAVIS - CA
  3. Expert Reviews of Pharmacoeconomics and Outcomes Research, in press.
    1R01MH089466-01, http://www.ncbi.nlm.nih.gov/pubmed/22788258 - TILFORD, JOHN M - ARKANSAS CHILDREN'S HOSPITAL RES INST - LITTLE ROCK - AR
  4. 3R01MH077000-03S1, http://www.ncbi.nlm.nih.gov/pubmed/22430453 - MANDELL, DAVID S - UNIVERSITY OF PENNSYLVANIA - PHILADELPHIA - PA
  5. 1P30MH089877-01 - LEVITT, PAT R - UNIVERSITY OF SOUTHERN CALIFORNIA - LOS ANGELES - CA
  6. 5RC1MH089760-02, http://www.ncbi.nlm.nih.gov/pubmed/22271197 - RUBLE, LISA A - UNIVERSITY OF KENTUCKY - LEXINGTON - KY
  7. 5RC1MH089707-02 - LAJONCHERE, CLARA M - AUTISM SPEAKS, INC. - NEW YORK - NY
  8. For more information on the National Database for Autism Research, see http://ndar.nih.gov/.