ASD-Related Research Projects Not Included in the IACC Portfolio Analysis

This section contains lists of projects that are not specifically focused on autism, but may be helpful in understanding the broader landscape of ongoing research on disabilities and other topics that may be relevant to autism

Department of Education, Institute of Education Sciences (IES)

Award Period	Investigator	Title	Website
Award Period 2011-2012	Investigator Sarah Carroll	Title National Household Education Survey	Website http://nces.ed.gov/nhes/
Award Period 2008-2017	Investigator Gail Mulligan	Title Early Childhood Longitudinal Study, Kindergarten Class of 2010-11	Website http://nces.ed.gov/ecls/kindergarten2011.asp
Award Period 2007-2015	Investigator Steven Ingels (RTI)	Title High School Longitudinal Study	Website http://nces.ed.gov/surveys/hsls09
Award Period Ongoing	Investigator Drew Malizio	Title National Assessment of Educational Progress	Website http://nces.ed.gov/nationsreportcard/aboutnaep.asp
Award Period 2007-2013	Investigator Thomas Fiore	Title Evaluation of the IDEA Personnel Development Program	Website http://ies.ed.gov/ncee/projects/evaluation/disabilities_personnel.asp
Award Period 2010-2015	Investigator Jose Blackorby	Title Study of Early Intervention and Special Education Personnel and Services	Website http://ies.ed.gov/ncee/projects/evaluation/disabilities_persserv.asp
Award Period 2010-2015	Investigator John Burghardt	Title National Longitudinal Transition Study 2012	Website http://ies.ed.gov/ncee/projects/evaluation/disabilities_ideatrans.asp
Award Period 2007-2011	Investigator Alan Werner	Title IDEA National Assessment Implementation Study	Website http://ies.ed.gov/pubsearch/pubsinfo.asp?pubid=NCEE20114026
Award Period 2008-2013	Investigator Mengli Song	Title Study of School Accountability for Students with Disabilities	Website http://ies.ed.gov/ncee/projects/evaluation/disabilities_students.asp
Award Period 2009-2014	Investigator Tamara Daley	Title National Evaluation of the IDEA Technical Assistance and Dissemination Program	Website http://ies.ed.gov/ncee/projects/evaluation/disabilities_idea2004.asp
Award Period 2007-2013	Investigator Jill Constantine, Neil Seftor, Scott Cody	Title What Works Clearinghouse	Website http://ies.ed.gov/ncee/wwc/interventionreport.aspx?sid=295
Award Period 2007-2013	Investigator Jill Constantine, Neil Seftor, Scott Cody	Title What Works Clearinghouse	Website http://ies.ed.gov/ncee/wwc/SingleStudyReview.aspx?sid=10011
Award Period 2007-2013	Investigator Jill Constantine, Neil Seftor, Scott Cody	Title What Works Clearinghouse	Website http://ies.ed.gov/ncee/wwc/SingleStudyReview.aspx?sid=10011
Award Period 2004-2011	Investigator Elaine Carlson	Title Pre-Elementary Education Longitudinal Study	Website http://ies.ed.gov/ncser/projects/datasets_peels.asp
Award Period 2001-2011	Investigator Mary Wagner; Lynn Newman, Renée Cameto	Title National Longitudinal Transition Study-2	Website http://ies.ed.gov/ncser/projects/datasets_nlts2.asp
Award Period 2012-2014	Investigator Bonnie Doren, Christopher Murray, Ketih Zvoch	Title Examining malleable factors associated with school and post-school outcomes of economically disadvantaged youth with disabilities: A secondary analysis of data from the National Longitudinal Transition Study (NLTS2)	Website http://ies.ed.gov/funding/grantsearch/details.asp?ID=1242
Award Period 2011-2014	Investigator Karrie Shogren	Title Exploring the predictors and outcomes of selfdetermination for secondary students with disabilities using NLTS2	Website http://ies.ed.gov/funding/grantsearch/details.asp?ID=1100

Appendix B

ASD Research Progress on IACC Strategic Plan Objectives: Summary of Years 2008 to 2012

The tables include data (project numbers and funding) from Federal and private funders of ASD research for years 2008 through 2012, as aligned with the objectives of the 2011 IACC Strategic Plan. They also include summaries (based on discussions during the 2013 IACC Strategic Plan Update Workshop) of progress on reaching the goals of each objective, as well as remaining gaps, needs, and opportunities. Please note the following:

During the updating of the Strategic Plan from 2008 to 2010, the wording and numbering of objectives changed. Data included in each Portfolio Analysis Report from 2008 to 2012 was categorized at the time with respect to the most recent iteration of the Strategic Plan where the objectives had changed. For the purpose of this five-year comparison, data from the Portfolio Analyses conducted in 2008 and 2009 were aligned with the most recent objectives, found in the 2011 Strategic Plan. The full wording of the 78 objectives listed in the 2011 Strategic Plan is depicted in the left column of the table.

The middle five columns of the table contain the data (project numbers and funding) for each individual year from 2008 to 2012, with the objective number (as it appeared in the annual Portfolio Analysis) listed above it. The IACC recommended budget listed below the project data represents the most updated budget listed in the 2011 Strategic Plan. If the recommended budget has been revised since 2008, the year the revision took place is found in parentheses following the budget figure. Therefore, if there is no mention of a revision, the IACC recommended budget has remained constant from 2008 to 2011. The annual project status for each objective from 2008 to 2012 is indicated within the table by colored highlighting of the objective number. An objective is considered active if its status is green or yellow, and inactive if its status is red.

• Any objective colored green has funding which is greater than or equal to the recommended funding for that year (determined by annualizing the recommended budget associated with that objective); any objective colored yellow has actively funded projects, but with funding that totals less than the annualized recommended amount; any objective colored red has no active, funded projects.⁹
• Objectives whose overarching aim (e.g., the ultimate goal of the research, irrespective of the number of projects or the budget for the objective) were achieved/partially achieved either in a previous year, with less annual funding than was recommended, or with funding that was not captured in the portfolio analyses,¹⁰ are colored pale green/pale yellow.

The far right column of the table lists the sum of the total funding aligned with each objective from 2008 to 2012.

• Highlighting of each total gives an indication of the overall progress toward completing each objective.
• green highlighting indicates that funding fully meets the recommend budget. yellow highlighting denotes that funding for a particular objective partially meets the IACC recommended budget, while red highlighting indicates that there has been no funding towards the particular objective.
• Objectives whose overarching aim (e.g. the ultimate goal of the research, irrespective of the number of projects or the budget for the objective) was achieved/partially achieved either with a lower funding level than was recommended or with funding that was not captured in the portfolio analyses, are colored pale green/pale yellow.

⁹Please note that while the green, yellow, and red indicators suggest a funding status for each year and that looking across all years may give some indication of a trend, some agencies and organizations provide all the funding for multiyear grants in a single year, resulting in the appearance of “decreased funding” in other years; projects completing the objectives may still have been ongoing in the years where the funding appears to be decreased. Thus, it is important to note the numbers of projects in looking across the chart, and to keep in mind that in a series, where, for example, most of the indicators are green, that the objective is likely to be largely “complete” according to the funding-based measure.

¹⁰Reasons why funding for certain projects may not have been captured in the portfolio analyses include projects that were supported by funding that was not specific for autism (i.e., projects that benefited autism but were supported by general neuroscience or developmental disorder funding) or projects supported by funders that did not participate in the portfolio analysis in a given year.

Appendix C

Subcategory Definitions

Question 1: Screening and Diagnosis

Diagnostic and screening tools: This subcategory includes projects that are developing new autism diagnostic and screening tests, as well as those establishing the usefulness of new or revised assessments for autism symptoms. It also encompasses projects aimed at adapting clinical assessments into other languages for use in multi-lingual community settings and non-U.S. countries.

Early signs and biomarkers: Projects which use a variety of methods to search for signs of autism in very young children (generally under age 3) that could be used for diagnosis, such as eye-tracking, physiological measures, and autism-specific behavioral patterns are included in this subcategory. More examples include projects investigating metabolic measures, such as the levels of specific chemicals, hormones, or proteins in the blood that could be used as biomarkers of the disorder.

Intermediate phenotypes/Subgroups: Included in this subcategory are projects aimed at identifying distinct subgroups of people with autism, or those that share common morphological, physiological, or behavioral features. Projects in this subcategory use a variety of methods to identify and distinguish these groups.

Symptomology: These projects seek to define the broad range and severity of autism symptoms, including both biological and behavioral characteristics. Among these studies are some that examine how children and adults with autism vary in their development of social communication and language. Other projects seek to understand the emergence of problem behaviors and how neurocognitive impairments can contribute to symptom development and phenotypic variability in those with an autism diagnosis.

Question 2: Biology

Cognitive studies: These are studies of psychological and mental processes, including memory, producing and understanding language, solving problems, and making decisions. Projects in this subcategory consist of those that investigate theory of mind, social cognition and empathy, understanding facial expressions of emotion (and how and why this is impaired in ASD), and recall and memory.

Computational science: Computational methods and modeling allow for the synthesis and study of large and complex sets of data. Some projects in this subcategory collect extensive experimental biological and behavioral data and use powerful computing techniques to reveal new insights. Other aspects of computer science are also included, such as developing statistical modeling techniques to better understand the biology of autism.

Co-occurring conditions: Research on conditions that often co-occur with ASD is included here, such as seizures/epilepsy, sleep disorders, gastrointestinal dysfunction, wandering/elopement behavior, attention deficit hyperactivity disorder (ADHD), and familial autoimmune disorders.

Developmental trajectory: Projects in this subcategory often include longitudinal studies following various aspects of biological and behavioral development in the same individuals over time. Examples include brain growth, face processing, change in neural connectivity over time, and development of communication skills and language processing. These studies often compare children with ASD to typically developing children or to their unaffected siblings.

Immune/Metabolic pathways: These projects focus on understanding the biological mechanisms of metabolism and the immune system that may be altered in autism, typically in cells and animal models. This largely includes studies on inflammation and inflammatory molecules (i.e., cytokines), as well as on the role of mitochondria, energy metabolism, and oxidative stress. Also included in this group are projects seeking to identify specific immune and metabolic triggers in early prenatal and post-natal life, such as maternal infection, maternal autoantibodies, and toxic exposures.

Molecular pathways: This subcategory includes studies on specific molecules and proteins (other than the immune and metabolic systems) that may be involved in the development of ASD and related genetic disorders (e.g., fragile X syndrome and Rett syndrome). Many of these projects use animal and cellular models to explore the biological effects of specific candidate genes and to identify common molecular pathways, including alterations in synaptic functioning and intracellular signaling cascades.

Neural systems: Studies in this subcategory explore the structure and activity of the brain and underlying neural systems involved in autism, including functional connections between brain regions. Many projects seek to identify the precise neural networks underlying communication and language processing, social interactions, and behavioral issues. These studies frequently employ imaging techniques, such as functional magnetic resonance imaging (fMRI) and diffusion tensor imaging (DTI), and other physiological measures of brain activity, such as electroencephalography (EEG).

Neuropathology: These projects typically include post-mortem examination of brain tissue from ASD individuals. Many of the studies in this subcategory explore how the architecture of the brain may be altered in individuals with autism or how gene expression varies in different areas of the brain.

Sensory and motor function: Projects in this subcategory explore the neural underpinnings of motor skills and abilities in children with ASD and assess visual, auditory, and other sensory processes in the brain.

Subgroups/Biosignatures: Because there is so much heterogeneity among individuals with autism, research to understand how certain subgroups of individuals that share certain behavioral or biological characteristics could help understand some of the underlying biology in ASD. This can be done by searching for certain biological factors ("signatures"), such as hormone levels or structural abnormalities in the brain, that define a particular subgroup. Many of these projects try to make the connection between certain genes with a known or suspected link to autism and the observable characteristic, or phenotype, that they cause.

Question 3: Risk Factors

Environmental risk factors: This subcategory includes a number of projects investigating potential environmental risk factors for autism. Example projects include studies of the effects of the microbiome, environmental contaminants and toxins, maternal dietary factors, medications taken during pregnancy or to induce labor, assistive reproductive treatments, child and maternal response to immune challenge, and registries where many of these factors can be tracked simultaneously.

Epigenetics: Epigenetics is the study of heritable changes in gene function that occur without a change in the DNA sequence (such as methylation of DNA). Environmental factors can cause these changes in gene expression, and projects in this subcategory seek to identify some of the environmental influences that may lead to these epigenetic changes.

Gene-Environment: These studies search for combinations of environmental risk factors and genetic susceptibility that increase the risk for ASD. (Note: While epigenetic studies often fit this definition, they are tracked separately for strategic planning purposes.)

Genetic risk factors: Projects in this subcategory seek to identify new genes that are implicated in increased risk for ASD or to better understand genetic risk factors that were previously identified.

Question 4: Treatments and Interventions

Behavioral: Projects in this subcategory involve a wide array of behavioral research and training methods, including applied behavior analysis (ABA), cognitive-behavioral therapy, discrete trial training, Early Start Denver Model, imitation training, joint attention training, Lovaas method, pivotal response training, sibling-mediated interventions, and social skills training.

Complementary, dietary, and alternative: This subcategory includes research on acupressure; acupuncture; antioxidants; cholesterol supplementation; glutathione metabolism; nutritional supplements, vitamins, and minerals; probiotics; and special diets (e.g., gluten-free, casein-free).

Educational: Nearly all research in classroom settings falls under this subcategory, including curricula, educational best practices, inclusive education programs, math and reading training, positive behavioral supports, special education programs, TEACCH (Treatment and Education of Autistic and Related Communication- Handicapped Children), and the “Social Stories” approach.

Medical/Pharmacologic: This subcategory includes research on drugs (e.g., antidepressants, anticonvulsants, antipsychotics, anxiolytics, melatonin, and stimulants) to treat autism and its co-occurring conditions, as well as medical therapies such as transcranial magnetic stimulation (TMS).

Model systems/Therapeutic targets: Animal models mimicking behaviors of ASD and those that are being used to develop or test new drug treatments, as well as cell lines used to discover new drug targets or to screen potential drug candidates, are included in this subcategory.

Occupational, physical, and sensory-based: Therapies in this subcategory encompass art therapy, motor training (including fine motor skills such as handwriting as well as gross motor training involving balance and posture), music therapy, occupational therapy, pet (animal) therapy, physical activity plans and exercise therapy (bike riding, swimming), physical therapy, sensory integration, therapeutic horseback riding, training in self-care and daily living skills, and vocational rehabilitation.

Technology-based interventions and supports: Augmentative and alternative communication (AAC), computer applications and software, picture exchange communication system (PECS), social robots, teleconferencing, video modeling and virtual reality (including virtual and 3D environments to mimic social situations), and wearable sensors are all examples of the types of technology in the projects in this subcategory.

Question 5: Services

Community inclusion programs: This subcategory includes research on programs that provide instruction in social, communication, and leisure skills to enable individuals with autism to participate in sports, recreation, and social-integration activities in fully integrated settings and to build successful relationships with others.

Efficacious and cost-effective service delivery: This subcategory includes research on programs involving web-based curricula and interventions as well as telehealth methodology, all of which could benefit those in underserved areas. Various parent training projects (to deliver a behavioral therapy, for example) using webbased methods such as teleconsultation and video feedback make distributing the training programs costeffective and accessible across the country. Studies to improve dental care are also in this subcategory for effective service delivery.

Family well-being and safety: Studies in this subcategory evaluate issues of caregiver stress and measures of quality of life for individuals with ASD and their families, as well as assess programs to help parents navigate the service system after their child receives an ASD diagnosis. It also surveys safety issues for those with autism, including wandering and bullying.

Practitioner training: Projects in this subcategory include projects to develop and evaluate programs to increase skill levels in service providers, including medical providers, direct support workers, parents and legal guardians, education staff, and public service workers.

Services utilization and access: These projects include surveys of service systems available in different states, evaluations of patterns of medical service use among children with autism, development of comprehensive online resource for autism services, and specific efforts in several states to model and evaluate coordination of services for people with autism. They also evaluate disparities in diagnosis and service utilization as well as barriers to access for racial and ethnic minorities.

Question 6: Lifespan Issues

Due to the small number of projects (35 in 2011 and 34 in 2012) and the significant overlap between topics covered in these projects, no subcategories were created for this question in the 2011-2012 Portfolio Analysis Report. As the research field grows, subcategories that encapsulate the scope of projects in this question may be defined in the future.

Question 7: Infrastructure and Surveillance

Biobanks: A biobank is a type of biorepository which stores human biological samples for use in research. Projects in this subcategory support collection of DNA and tissue samples from autism patients.

Data tools: These projects include bioinformatics databases to store genetic, phenotypic, and other medical information from autism patients. They also support infrastructure for several of these major databases to interact.

Research infrastructure: This subcategory includes coordinating centers that support multiple research projects by running tests, analyzing data, and providing statistical analyses. These projects also support facilities that operate large, shared instruments used by several scientists to test research samples.

Research recruitment and clinical care: Projects in this subcategory help increase participation in research studies and conduct medical evaluations for the participants, often collecting data that can be used for multiple studies.

Research workforce development: Workshops, conferences, and training programs that serve to expand the research workforce, enhance interdisciplinary research training, and recruit early-career scientists into the ASD field are included in this subcategory.

Surveillance and prevalence studies: Research that measures autism prevalence in the U.S. and internationally is contained in this subcategory, including the Autism and Developmental Disabilities Monitoring 9ADDM) Network sites maintained by the Centers for Disease Control and Prevention (CDC).

Interagency Autism Coordinating Committee Member Roster

Chair

Federal Members

Public Members

Office of Autism Research Coordination Staff Roster

About the IACC

The Interagency Autism Coordinating Committee (IACC) is a Federal advisory committee charged with coordinating all activities concerning autism spectrum disorder (ASD) within the U.S. Department of Health and Human Services (HHS) and providing advice to the Secretary of HHS on issues related to autism. It was established by Congress under the Children’s Health Act of 2000, reconstituted under the Combating Autism Act (CAA) of 2006, and renewed under the Combating Autism Reauthorization Act (CARA) of 2011 and the Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act of 2014.

Membership of the Committee includes a wide array of Federal agencies involved in ASD research and services, as well as public stakeholders, including self-advocates, parents of children and adults with ASD, advocates, service providers, and researchers, who represent a variety of perspectives from within the autism community. This makeup of the IACC membership is designed to ensure that the Committee is equipped to address the wide range of issues and challenges faced by families and individuals affected by autism.

Under the CAA and subsequent authorizations, the IACC is required to (1) develop and annually update a strategic plan for ASD research, (2) develop and annually update a summary of advances in ASD research, and (3) monitor Federal activities related to ASD.

Through these and other activities, the IACC provides guidance to HHS and partners with the broader autism community to accelerate research and enhance services with the goal of profoundly improving the lives of people with ASD and their families.

For more information about the IACC, see http://www.iacc.hhs.gov.