Appendix A: List of Acronyms

ACL: United States' Administration for Community Living

ADDM Network: Autism and Developmental Disabilities Monitoring Network

ARC: Australian Research Council

AHRQ: United States' Agency for Healthcare Research and Quality

ARI: Autism Research Institute (U.S. Funder)

ASD: Autism Spectrum Disorder

AS: Autism Speaks (U.S. Funder)

ASF: Autism Science Foundation (U.S. Funder)

AUD: Australian Dollar

Autism CARES Act: Autism Collaboration, Accountability, Research, Education and Support Act of 2014

Autism CRC: Cooperative Research Centre for Living with Autism

BBRF: Brain and Behavior Research Foundation (U.S. Funder)

BCF: Brain Canada Foundation (Canadian Funder)

CAD: Canadian Dollar

CARD: Center for Autism and Related Disorders (U.S. Funder)

CDC: United States' Centers for Disease Control & Prevention

CIHR: Canadian Institutes of Health Research

DoD – Army: United States' Department of Defense – Army

ED: United States' Department of Education

EPA: United States' Environmental Protection Agency

EPSRC: United Kingdom's Engineering and Physical Sciences Research Council

HHS: United States' Department of Health and Human Services

HRSA: United States' Health Resources and Services Administration

IACC: Interagency Autism Coordinating Committee

KBHN: Canada's Kids Brain Health Network

MRC: United Kingdom's Medical Research Council

NASS: Canadian National Autism Spectrum Disorder Surveillance System

NECC: New England Center for Children (U.S. Funder)

NHMRC: Australia's National Health and Medical Research Council

NHS: United Kingdom's National Health Service

NICE: United Kingdom National Institute for Health and Care

NIH: United States' National Institutes of Health

NIHR: United Kingdom's National Institute for Health Research

NSF: United States' National Science Foundation

OAR: Organization for Autism Research (U.S. Funder)

OARC: Office of Autism Research Coordination

OBI: Ontario Brain Institute (Canadian Funder)

PCORI: Patient-Centered Outcomes Research Institute

POND: Canada's Province of Ontario Neurodevelopmental Disorders Research Network

SF: Simons Foundation

SPARK: Simons Foundation Powering Autism Research for Knowledge

U.K: United Kingdom

U.S.: United States

Appendix B: Methods

Data Collection Methods

Canada and United States

The U.S. and Canada collected ASD project information through data calls to each government agency and private organization. Projects were reviewed and coded to the seven research areas by two members of the OARC team.

The funding mechanisms among funders vary, some funders provide an entire project's funding in the first year of an award while other projects receive funding annually during an award period. To maintain consistency in our reporting, funders use the same funding mechanism from year to year.

United Kingdom

U.K. data was sourced from the Dimensions database - a research grant database developed by ÜberResearch (www.uberresearch.com) that covers around 200 funders worldwide. All major U.K. funding organizations are included in the database, as well as many smaller organizations such as Autistica.

Search categories can be created in the Dimensions database using key words, boost terms, exclusion terms and by applying a threshold to remove the long tail of grants that mention the area of interest but are not deemed of a sufficient degree to make it into the final set of grants.

Autistica developed a search category to reasonably represent ‘autism research'. The search expression was derived from the description of autism in the Research, Condition, and Disease Categorization (RCDC) thesaurus. Standard Dimensions filters for country of funder (U.K.) and start year were applied. Boost terms were selected based on descriptions of grants returned in the searches and a threshold score was applied. The search results were then manually scanned for false positives by two members of the Autistica team. Projects were reviewed and coded to the seven research areas by members of the OARC and Autistica team.

In the U.K., all funding organizations follow the same funding mechanism. Each funder provides a project's entire funding in the first year of a project's award period. The subsequent years of a project do not receive any funding.

Australia

Australian data were initially sourced from the Dimensions database¹², in a manner similar to the U.K. data, except that the country of funder specified Australia. Manual searches of publicly-available databases listing research grants awarded by government agencies (ARC and NHMRC) identified a small number of additional grants not listed in the Dimensions database. As data regarding Autism CRC investment in autism research were not available in the Dimensions database, this information was gained from publicly available annual reports published on the Autism CRC website and a direct request to the organisation for further details of their investment portfolio. Finally, the websites of other relevant Australian government entities and major Australian philanthropic organisations were also reviewed.

In Australia, the funding mechanisms mirror those in the UK, with funding recorded as a total amount provided in the first year of a project's award period, and no funding recorded in subsequent years of a project.

Inclusion/exclusion of grants
Grants were excluded from analyses if (1) funding was awarded by a source external to Australia (n = 22), or (2) insufficient information was available regarding the grant or associated research project to determine eligibility for inclusion (n = 9).

Funding Conversion

To compare funding amounts among the countries, the Purchasing Power Parity (PPP) rate for 2016 was used to convert United Kingdom's pound sterling, the Canadian dollar, and the Australian dollar to U.S. dollars.¹³

¹² Data were sourced from Dimensions, an inter-linked research information system provided by Digital Science (https://www.dimensions.ai).

¹³ 2016 Purchasing Power Parity (2016): https://data.oecd.org/conversion/purchasing-power-parities-ppp.htm

Appendix C: Funder Mission Statements

Australia

Government Agencies

Australian Research Council (ARC)

The Australian Research Council (ARC) is Australia's federal funding agency supporting fundamental and applied research and research training across all disciplines. Its purpose is "to grow knowledge and innovation for the benefit of the Australian community through funding the highest quality research, assessing the quality, engagement and impact of research and providing advice on research matters" to the Australian Government. It also brokers partnerships between researchers and industry, government, community organizations and the international community.

National Health and Medical Research Council (NHMRC)

The National Health and Medical Research Council is Australia's leading expert body in health and medical research. They seek to create knowledge and build research capability through investment in the highest quality health and medical research and the best researchers; drive the translation of health and medical research into clinical practice, policy and health systems and the effective commercialization of research discoveries, supporting the pursuit of an Australian health system that is research-led, evidence-based, efficient and sustainable; and maintain a strong integrity framework for research and guideline development, underpinning rigorous and ethical research and relevant and accurate guidelines, and promoting community trust.

Private Organizations

Cooperative Research Centre for Living with Autism (Autism CRC)

Autism CRC was established in 2013 and is the world's first national, cooperative research effort focused on autism, taking a whole-of-life view from diagnosis and the early years, through the school years and into adult life.It includes 56 participant organizations and other partners based around Australia and internationally, and develops unique collaborations with the autism community, research organizations, industry and government. Their mission is to motivate, facilitate and translate collaborative autism research across the lifespan, underpinned by inclusive practices. They are committed to inclusive research practices and coproduction of outcomes with those on the spectrum and their families to ensure their research provides practical and tangible outputs that benefit the community.

Financial Markets Foundation for Children

The Financial Markets Foundation for Children is a charitable organization, whose purpose is the promotion of the health and welfare of children of Australia. The Foundation receives both corporate and individual donations by participants of Australia's financial community to fund research programs and a wide range of other projects designed specifically to improve the health, welfare and well-being of the future of Australia.

Ian Potter Foundation

The Ian Potter Foundation is a major Australian philanthropic foundation that supports and promotes excellence and innovation. Established in 1964, The Foundation has contributed over $200 million to thousands of projects, both large and small, including on autism, with a strong track record of funding projects that respond decisively to key issues and develop our creativity and capacity as a nation. As such, The Foundation maintains a tradition of encouraging excellence and enabling innovation to facilitate positive social change.

Canada

Government Agencies

Canadian Institutes of Health Research (CIHR)

The Canadian Institutes of Health Research (CIHR) is Canada's federal funding agency for health research. CIHR's mandate is "To excel, according to internationally accepted standards of scientific excellence, in the creation of new knowledge and its translation into improved health for Canadians, more effective health services and products and a strengthened Canadian health care system".

Private Organziations

Ontario Brain Institute

The Ontario Brain institute (OBI) is a provincially- funded, not-for-profit research centre focusing on maximizing the impact of neuroscience and establishing Ontario as a world leader in brain research, commercialization and care. OBI funds and manages five Integrated Discovery Programs. OBI supports ASD research through Neurodevelopmental Disorders, one of its five Integrated Discovery Programs. These pan-Ontario programs take a multi-discipline, multi-stakeholder approach to supporting research.

Brain Canada

Brain Canada is a charitable organization that funds innovative, paradigm-changing brain research across Canada. Brain Canada has supported Autism Research through partnerships with the Kids Brain Health Network, the Azrieli Foundation, and others.

United Kingdom

U.K. Research Councils

Economic and Social Research Council (ESRC)

The Economic and Social Research Council (ESRC) is a non-departmental public body funded by a grant-in-aid from the U.K. government. The ESRC are the U.K.'s largest organization for funding research on economic and social issues. The ESRC support independent, high quality research which has an impact on business, the public sector and civil society. At any one time ESRC supports over 4,000 researchers and postgraduate students in academic institutions and independent research institutes. Current ESRC priority areas include: mental health; housing; productivity; understanding the macro economy; climate change; innovation in health and social care; trust and global governance in a turbulent age.

Engineering and Physical Sciences Research Council (EPSRC)

The Engineering and Physical Sciences Research Council (EPSRC) is a non-departmental public body funded by a grant-in-aid from the U.K. government. The EPSRC is the main funding body for engineering and physical sciences research in the U.K. The EPSRC portfolio covers a vast range of fields from healthcare technologies to structural engineering, manufacturing to mathematics, advanced materials to chemistry. EPSRC's mission is to contribute to a healthy, connected, resilient, productive nation.

Innovate UK

Innovate UK is the operating name of the Technology Strategy Board, the U.K.'s innovation agency. It is a U.K. non-departmental public body reporting to the Department for Business, Energy and Industrial Strategy (BEIS). Innovate UK's mission is to accelerate U.K. economic growth by stimulating and supporting business-led innovation.

Medical Research Council (MRC)

The Medical Research Council (MRC) is a non-departmental public body funded by a grant-in-aid from the U.K. government. The MRC's mission is to: encourage and support research to improve human health; produce skilled researchers; advance and disseminate knowledge and technology to improve the quality of life and economic competitiveness of the U.K.; and promote dialogue with the public about medical research. The MRC portfolio covers six broad areas of research: infections and immunity; molecular and cellular medicine; neurosciences and mental health; population and systems medicine; global health; and translational research.

National Institute for Health Research (NIHR)

The National Institute for Health Research (NIHR) was established as part of the U.K. government's health research strategy ‘Best Research for Best Health' (2006) and is funded by the Department of Health and Social Care. It has five objectives: to fund high quality research to improve health; to train and support health researchers; to provide world-class research facilities; to work with the life sciences industry and charities to benefit all; to involve patients and the public at every step. NIHR fund health and care research and translate discoveries into practical products, treatments, devices and procedures. They ensure the NHS is able to support the research of other funders to encourage broader investment in, and economic growth from, health research. NIHR work with charities and the life sciences industry to help patients gain earlier access to breakthrough treatments and. They train and develop researchers to keep the nation at the forefront of international research.

U.K. Charitable Organizations

Autistica

As the U.K.'s leading autism research charity, Autistica exist to harness the potential of cutting-edge science to improve the lives of autistic people and their families. The charity's vision is a long, healthy, happy life for autistic people and their families. They fund and promote ground-breaking research, improve understanding of autism and advance new therapies and interventions. The charity has funded the set up and development of some of the most important U.K. studies and scientific assets in autism, including the BASIS and iBASIS trials, the ASD-UK family database and the Autism Brain Bank. Current Autistica priority areas include: addressing mental health and suicide; physical health; language and communication; epilepsy and autism. Autistica aim to give the autism community a voice in everything they do.

British Academy

The British Academy is the U.K.'s national body for the humanities and social sciences – the study of peoples, cultures and societies, past, present and future. The academy has three principal roles: as an independent fellowship of world-leading scholars and researchers; a funding body that supports new research, nationally and internationally; and a forum for debate and engagement – a voice that champions the humanities and social sciences.

Wellcome Trust

The mission of the Wellcome Trust is to improve health for everyone by helping great ideas to thrive. It is a global charitable foundation, both politically and financially independent. It has a £23.2bn investment portfolio and works with academia, philanthropy, business, governments and civil society around the world. Current Wellcome Trust priority areas include: maximizing the health benefits of genetics and genomics; understanding the brain; combating infectious disease; investigating development, ageing and chronic disease; connecting environment, nutrition and health.

United States

Federal Agencies - Department of Health and Human Services (HHS)

The mission of HHS is to enhance and protect the health and well-being of all Americans by providing for effective health and human services and fostering advances in medicine, public health, and social services. HHS includes more than 300 programs and 11 operating divisions covering a wide spectrum of activities.

Administration for Community Living (ACL)

Formed in 2012, ACL serves as the federal agency responsible for increasing access to community supports, while focusing attention and resources on the unique needs of older Americans and people with disabilities across the lifespan. ACL funds the AutismNOW web resource, which provides information for the ASD community on topics including detection, intervention, education, transition from high school into early adulthood, employment, advocacy, community inclusion, aging issues, and public policy.

Agency for Healthcare Research and Quality (AHRQ)

The mission of AHRQ is to improve the quality, safety, efficiency, and effectiveness of health care for all Americans. Their portfolio includes projects to evaluate the comparative effectiveness of autism interventions and to conduct systematic reviews of the literature on topics such as autism screening and autism interventions, with the goal of evaluating the strength of the evidence supporting practices and identifying gaps in research. AHRQ also funds projects aimed at disseminating information about best practices and other findings from their reviews to researchers, practitioners, the patient community, and other stakeholders.

Centers for Disease Control and Prevention (CDC)

The mission of CDC is to create the expertise, information, and tools that people and communities need to protect their health. This is achieved through health promotion, prevention of disease, injury and disability, and preparedness for new health threats. CDC's autism research portfolio includes projects to collect data on ASD prevalence and risk factors, and projects to improve awareness, early detection, and intervention.

Health Resources and Services Administration (HRSA)

HRSA is the primary federal agency for improving access to health care services for people who are uninsured, isolated, or medically vulnerable. The Maternal and Child Health Bureau (MCHB) supports autism-related programs through its Combating Autism Act Initiative (CAAI), including projects to increase awareness, reduce barriers to screening and diagnosis, promote the development of guidelines for evidence-based practices, and train health care professionals to provide screening as well as diagnostic and early, evidence-based intervention. Flagship programs include the Autism Intervention Research Networks (AIR-B and AIR-P), the Developmental Behavioral Pediatrics Research Network (DBPNet), and the Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program.

National Institutes of Health (NIH)

The mission of NIH is to seek fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to enhance health, lengthen life, and reduce illness and disability. The NIH supports a broad range of research on ASD, including projects on the basic neuroscience of ASD, risk factors, diagnosis, intervention, and services research. One of the flagship autism programs funded by NIH, the Autism Centers of Excellence (ACE), is a collection of research centers and networks across the country that conduct research on ASD. Since 2014, NIH has funded the ServASD initiative, which supports research to develop and test the effectiveness of service strategies to improve functional outcomes in early childhood, transition from youth to adulthood, and adulthood. NIH also funds interdisciplinary data repositories such as the National Database for Autism Research (NDAR) to facilitate the sharing of autism research data among scientists worldwide.

Federal Agencies – Other

Department of Defense (DoD)

The Department of Defense (DoD) is charged with coordinating and supervising all agencies and functions of the government concerned directly with national security and the U.S. Armed Forces. Within the DoD's Defense Health Research Program, the Congressionally Directed Medical Research Program's Autism Research Program (ARP) was established in 2007, with the mission to improve the lives of individuals with ASD by promoting innovative research that advances the understanding of ASD and leads to improved outcomes for those with ASD. The projects that the ARP funds span the scope of the IACC.

The U.S. Air Force (DOD-AF) also funds research on ASD, and is developing a multidisciplinary autism research and services program for military families, part of which involves the creation of a comprehensive registry to provide higher quality data for autism clinical and genetics research.

Department of Education (ED)

Department of Education (ED) The mission of the U.S. Department of Education is to promote student achievement by fostering educational excellence and ensuring equal access. The department funds a portfolio of ASD-related projects relating to development and delivery of educational interventions and services, particularly for children and transition-aged youth. A large portion of ED's funding goes towards developing practitioner training as well as investment in training researchers. ED also supports funding towards a joint initiative between ED, HHS, Department of Labor, and the Social Security Administration called Promoting Readiness of Minors in Supplemental Security Income (PROMISE), which was created to foster improved health, education, and post-secondary outcomes for children ages 14-16 who receive Supplemental Security Income (SSI), as well as their families.

Environmental Protection Agency (EPA)

The mission of the U.S. EPA is to protect human health and the environment. EPA co-funds the Center for Children's Environmental Health (CCEH) at the University of California at Davis with the National Institute of Environmental Health Sciences (NIEHS)/ NIH, which conducts research into how environmental exposure to toxins might interact with a person's genes and immune system to influence the risk and severity of ASD.

National Science Foundation (NSF)

NSF is an independent federal agency, formed by Congress to promote the progress of science and to advance the national health, prosperity, and welfare. NSF funds basic research in biology, mathematics, computer science, and the social sciences as well as technology development, but it does not focus on health or disease-related research. Although NSF does not have a program focused on ASD, it funds several projects that involve basic science or technologies with the potential to be applied to ASD in the future. NSF is a leading funder of projects involving technological interventions and supports, including robotics and virtual reality technologies that could be used to enhance daily living skills and activities of individuals with disabilities.

Private Organizations

Autism Research Institute (ARI)

ARI's mission is to meet the needs of the global autism community through research, networking, education, and support for families and people of all ages on the autism spectrum. ARI is dedicated to developing a standard of care for individuals with autism spectrum disorders and their families, and funds a range of work with a particular emphasis on investigation of the biological underpinnings of autism, including immune and metabolic pathways.

Autism Science Foundation (ASF)

ASF's mission is to support autism research by providing funding and other assistance to scientists and organizations conducting, facilitating, publicizing, and disseminating autism research. The organization also provides information about autism to the general public and serves to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism. ASF funds the Autism Sisters Project, which recruits unaffected sisters of individuals with autism to help researchers understand the female protective effect. ASF also supports the Baby Siblings Research Consortium, a network of researchers studying the earliest behavioral and biological features of ASD. In addition, ASF funds pre- and postdoctoral trainees to conduct basic and clinical research relevant to ASD, including studies focused on a wide range of topics such as identification of biomarkers, molecular and cellular mechanisms, genetic and environmental risk factors, treatments, and service delivery.

Autism Speaks (AS)

Autism Speaks (AS) Autism Speaks is dedicated to promoting solutions, across the spectrum and throughout the life span, for the needs of individuals with autism and their families through advocacy and support; increasing understanding and acceptance of people with autism spectrum disorder; and advancing research into causes and better interventions for autism spectrum disorder and related conditions. AS funds a broad profile of ASD research ranging from basic neuroscience and the molecular causes of autism to implementation and testing of interventions for those diagnosed with autism. Autism Speaks supports the Autism Treatment Network (ATN), a collaboration of 14 specialty centers dedicated to providing families with state-of-the-art, multidisciplinary healthcare for children and teens affected by autism.

Brain and Behavior Research Foundation (BBRF)

BBRF funds basic neuroscience research to elucidate the molecular mechanisms underlying brain disorders and conditions. BBRF's autism research portfolio primarily includes studies on the genetics and molecular mechanisms underlying autism.

Center for Autism and Related Disorders (CARD)

CARD is one of the world's largest organizations using applied behavior analysis (ABA) in the treatment of ASD, and other related disorders. CARD's research portfolio is centered around developing new behavioral interventions, assessing existing behavioral interventions, and developing and implementing training/intervention programs for individuals on the autism spectrum from birth to age 21.

Organization for Autism Research (OAR)

The mission of OAR is to support research that directly impacts the day-to-day quality of life of those with ASD. This includes research to inform and improve education, communication, self-care, social skills, employment, behavior, and adult and community living. In this context, it extends to issues related to family support, the efficacy of service delivery systems, and demographic analyses of the autism community.

New England Center for Children (NECC)

The New England Center for Children is a private, nonprofit autism research and education center dedicated to transforming the lives of children with autism worldwide through education, research, and technology. NECC strives to be a global leader in the provision of effective, evidence-based educational services for the millions of under-served children with autism and their families.

Patient-Centered Outcomes Research Institute (PCORI)

PCORI helps people make informed healthcare decisions and improves healthcare delivery and outcomes by producing and promoting high-integrity, evidence-based information that comes from research guided by patients, caregivers, and the broader healthcare community.

Simons Foundation (SF)/ Simons Foundation Autism Research Initiative (SFARI)

The mission of SF is to advance the frontiers of research in mathematics and the basic sciences. SF's single largest initiative is the Simons Foundation Autism Research Initiative (SFARI), which seeks to improve the diagnosis and treatment of ASD by funding, catalyzing, and driving innovative research of the greatest quality and relevance. The SF ASD portfolio includes research on genetic and cellular factors underlying autism, identification of genetic and environmental risk factors, and development of potential treatments. SFARI supports SPARK, a large autism research project aimed at collecting medical and genetic information from individuals with autism and their family in an effort to increase the power of autism research for knowledge.

Contributors

United States

OARC
National Institute of Mental Health
National Institutes of Health
6001 Executive Boulevard, Room 7215,
Rockville, MD 20892
USA

Email: IACCPublicInquiries@mail.nih.gov
Website: https://iacc.hhs.gov/

Susan A. Daniels, Ph.D.
Director

Oni Celestin, Ph.D.
Science Policy Analyst

Julianna Rava, M.P.H.
Science Policy Health Analyst

United Kingdom

Autistica
St Saviour's House
39–41 Union Street
London SE1 1SD
United Kingdom

Email: friends@autistica.org.uk
Website: https://www.autistica.org.uk

James Cusack, Ph.D.
Director of Science

Cat Hughes, Ph.D.
Research and Grants Officer

Georgina Warner, Ph.D.*
Research Manager

*Individual contributed to the report but is no longer affiliated with the listed organization or agency.

Canada

CIHR

Website: http://www.cihr-irsc.gc.ca/e/8602.html

Elizabeth Theriault, PhD
Senior Consultant, Strategic Initiatives
Institute of Neurosciences,
Mental Health and Addiction

Carolina Koutras, PhD*
Team Lead, Projects and Initiatives
Institute of Neurosciences,
Mental Health and Addiction

Australia

Macquarie University
Balaclava Rd, Macquarie Park
New South Wales 2109
Australia

Website: http://www.mq.edu.au

Liz Pellicano, PhD
Professor of Educational Studies
Faculty of Human Sciences
Email: liz.pellicano@mq.edu.au

Jacquiline den Houting, PhD
Postdoctoral Research Fellow
Department of Educational Studies
Faculty of Human Sciences
Email: jac.denhouting@mq.edu.au

Cover Design
Medical Arts Branch, Office of Research Services, National Institutes of Health

Copyright Information
All material appearing in this report is in the public domain and may be reproduced or copied. A suggested citation follows.

Suggested Citation
Office of Autism Research Coordination, National Institute of Mental Health, Autistica, Canadian Institutes of Health Research, and Macquarie University. 2016 International Autism Spectrum Disorder Research Portfolio Analysis Report. October 2019. Retrieved from the U.S. Department of Health and Human Services Interagency Autism Coordinating Committee website:: https://iacc.hhs.gov/publications/international-portfolio-analysis/2016.