International Portfolio Analysis Report
Autism Spectrum Disorder Research
Purpose and Goals for International Analysis
Over the past nine years in the United States (U.S.), the Office of Autism Research Coordination (OARC) at the National Institutes of Health (NIH) has published an annual national autism spectrum disorder (ASD) research portfolio analysis report. The report provides comprehensive information about autism research funding and helps monitor ASD research efforts across the country. Outside of the U.S., other countries have been supporting ASD research, but there has never been an effort to track global investment. To achieve a first assessment of global ASD research, four countries collaborated to compile and analyze funding of ASD research within their countries and assess the composition of each research portfolio. The comparison of portfolios revealed areas of emphasis, similarities, differences, and gaps across the portfolios. The analysis fostered international collaboration and identified global trends in ASD research funding in the hopes of accelerating and inspiring research that will benefit the autism community.
The purpose of this report is to present the current landscape of ASD research in the United States, the United Kingdom, Canada, and Australia. Information on ASD research funding was collected and analyzed by the OARC in the United States, Autistica in the United Kingdom, the Canadian Institutes of Health Research (CIHR) in Canada, and Macquarie University in Australia. The report will compare levels and types of investment among countries, such as where research is being funded, what types of agencies and organizations support ASD research, and what research areas received funding. The analysis of the 2016 international research portfolio sheds light on areas for future research partnerships and areas in need of additional support in order to create a global ASD research portfolio that comprehensively addresses the needs of people on the autism spectrum worldwide.
Please note: The terms "person with autism," "person with ASD," "autistic person," and "person on the autism spectrum" are used interchangeably throughout this report. Some members of the autism community prefer one term, while others prefer another. We respect the different opinions within the community on the use of this language and do not intend to endorse any particular preference. In addition, the terms "autism" and "autism spectrum disorder (ASD)" are used interchangeably throughout this document unless otherwise noted.
Countries included in the International ASD Research Portfolio Analysis
The United States is the largest global funder of ASD research. Within the U.S., both federal government agencies and private organizations provide funding for autism research. In addition, some ASD research initiatives are funded through public-private partnerships between federal agencies and private organizations. Starting in 2006, the U.S. government enacted a series of laws to bolster federal agency efforts related to ASD research, services and supports, and interagency coordination. The latest in this series, the Autism Collaboration, Accountability, Research, Education and Support (Autism CARES) Act of 2014 (P.L. 113-157) authorizes a variety of federal agency activities that support autism research, services, provider training, and surveillance programs. The Autism CARES Act also authorizes the Interagency Autism Coordinating Committee (IACC), an advisory body composed of federal officials from multiple U.S. government departments and agencies, as well as community stakeholders, including autistic adults, family members, leaders of autism research, advocacy, and service organizations. The broad membership of the IACC provides a diverse range of expertise and viewpoints to inform U.S. autism efforts. The IACC is charged with responsibilities including coordination of federal agency efforts, gathering public input, and providing collective advice and recommendations to government agencies on priorities for ASD research, services, and policy.
The IACC is required by the Autism CARES Act to develop and annually update a Strategic Plan for autism spectrum disorder that will provide guidance to government agencies and partner organizations on priorities for autism research, services, and policy. The Strategic Plan was recently revised to the current edition, the 2016-2017 IACC Strategic Plan for Autism Spectrum Disorder, which describes progress across the different areas of ASD research and provides a set of 23 objectives that address research, services, and policy needs identified by the IACC using input gathered from public stakeholders and experts. OARC, the lead contributor of this global portfolio analysis report, manages the IACC and produces additional reports including an annual analysis of the U.S. autism research portfolio, the IACC Strategic Plan, the annual IACC Summary of Advances in ASD Research, and additional reports on federal government activities related to autism.
Prevalence estimates for autism in the U.S. are provided by the Centers for Disease Control and Prevention (CDC) through population-based ASD surveillance and research conducted by the Autism and Developmental Disabilities Monitoring (ADDM) Network. Since 2000, the ADDM surveillance has resulted in the most robust estimates to date of the prevalence of ASD in the U.S. Currently, the CDC estimates that about 1 in 59 8-year old children in the U.S. have been identified with ASD. Several U.S. federal agencies and private organizations are investing in research to understand the causes and biology of autism, diagnosis and interventions, trajectories and outcomes, and how best to support individuals, families and communities affected by autism.
The National Institutes of Health (NIH) is the largest funder of autism research in the U.S. and globally, with an investment of $281 million in 2018,1 spanning research on diagnosis, underlying biology, risk factors, treatment, and services. Other major U.S. government funders of ASD research include the CDC, which supports research on surveillance, epidemiology, and early identification; the Health Resources and Services Administration (HRSA), which funds research on physical and behavioral health and services; the Department of Education (ED), which supports research on educational interventions and training for teachers; and the Department of Defense (DoD), which funds biomedical research on ASD and novel treatments and interventions for people on the spectrum. The Simons Foundation, Autism Speaks, and the Autism Science Foundation are examples of private, non-profit organizations that also support autism research in the U.S. To date, based on an analysis of 18 U.S. government agencies and private organizations, approximately 80% of U.S. autism research is funded by government sources.2
The United Kingdom (U.K.) has supported autism research through the efforts of public body agencies and private, non-profit organizations for many years. The government has established the Autism Act (2009), which set out responsibilities for local authorities and the National Health Service (NHS) to improve services for autistic adults, including a diagnostic pathway in every area, training for key professionals, local plans and a local autism lead. Updated statutory guidance was published in 2015. Also, the government authorized the 'Fulfilling and Rewarding Lives' (2010), later updated to 'Think Autism' (2014), which is a national strategy for autistic adults. The implementation of the strategy is overseen at the senior level by a cross-departmental Adult Autism Programme Board, led by the Department of Health. In 2018, the implementation model of the Strategy was refreshed and an overarching objective to improve autistic people's life expectancy was introduced. The Department of Health and Social Care has committed to review the Strategy in full in 2019. Following lobbying by Autistica and other autism charities, the UK's NHS adopted autism (alongside heart disease, cancer and mental health) as a clinical priority for the first time in 2018. Also, the National Institute for Health and Care (NICE) Guidelines set out recommendations for local children's services, including what pathways to diagnosis should look like and the types of support that should be available post-diagnosis.
In the U.K., the prevalence of autism is estimated to be 1 in 100 people.3 The estimated rate is based on a population survey performed by the U.K.'s National Health Service. The prevalence data includes information on the adult prevalence rate, which is the only known prevalence study to have been done of an adult autism population.
Many of the U.K.'s autism research initiatives are spearheaded by Autistica, the UK's national autism research charity. The organization'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 autism-UK family database, and its research network, Discover. Autistica aims to give autistic people and their families a voice in everything they do, from contributing to their Strategy, to making choices on funding calls, to actively running research projects.
In 2017, Autistica launched 'Discover' - the first national network for autism research. Discover is driving a step-change in autism research by linking autistic people with institutions carrying out autism research, parents and caregivers, charities, NHS Trusts, hospitals and care providers. It is encouraging research to focus on what matters most to autistic people and their families. Also, Discover is streamlining the U.K. autism research focus by uniting organizations, coordinating infrastructure, holding a national autism research conference annually, and commissioning research via the network. Discover is sustaining U.K. autism research by training the next generation of autism research leaders and is increasing links with the community by incentivizing and supporting outreach to local communities and supporting autistic people to undertake research.
In Canada, ASD research efforts are largely driven by the government, but are also supported by private organizations, mostly through public-private partnerships. While Canada does not currently have legislation specifically focused on advancing ASD efforts, government agencies are bolstering research efforts related to ASD through chair programs, salary support, research grants and training awards. The Government of Canada also supports surveillance and skill development projects related to ASD.
In Canada, one in 66 children and youth between five and 17 years of age are diagnosed with ASD.4 The prevalence rate is based on data collected through the Canadian National Autism Spectrum Disorder Surveillance System (NASS). To understand the causes of ASD and to find new treatments, the Government of Canada and several leading private and non-profit organizations are supporting the work of a vibrant research community.
As Canada's health research agency, the Canadian Institutes of Health Research (CIHR) is a primary investor in ASD research. CIHR is composed of 13 Institutes and collaborates with partners and researchers to support the discoveries and innovations that improve health and strengthen Canada's health care system. It is an independent agency and is accountable to Parliament through the Minister of Health. Through CIHR's Institute of Neurosciences, Mental Health and Addiction's strategic leadership and collaboration, CIHR advances research relating to neurosciences, mental health and addictions in Canada. In 2012-13 and 2016-17, CIHR has invested over $40M in research related to autism. As part of this overall investment, 171 research projects were supported across the country, including six clinical trials spanning a breadth of research areas from behavioral neurosciences and stem cell biology to psychology and education. CIHR also supports the Kids Brain Health Network (first trans- Canadian network dedicated to the improvement of assessments, treatments, and scientific knowledge surrounding neurodevelopmental disabilities), and CHILD- BRIGHT. The CHILD-BRIGHT network supports research into new treatments and services for children with brain- based development disabilities, such as autism, so that they can have an improved quality of life.
The Government of Canada supports research professors and their scientific initiatives through the Canada Research Chairs Program (CRCP). In 2012, Health Canada partnered with CIHR, Autism Speaks Canada,the Canadian Autism Spectrum Disorders (ASD) Alliance, Kids Brain Health Network (formerly NeuroDevNet) and the Sinneave Family Foundation to support funding a research professor as a Chair in Autism Spectrum Disorders Treatment and Care Research. This program was specifically created to bridge the significant gap for the translation of research into relevant and efficient treatments and/or standards of care for children and adults with ASD. CIHR is currently supporting three other Chairs (research professors) through the Canada Research Chairs program at leading Canadian institutions, focusing on the biology of ASD, developmental neurogenetics, and translational therapeutics. Additionally, a significant portion of CIHR investments in the area of ASD support the Kids Brain Health Network, funded through the federal Networks of Centres of Excellence program. This network is dedicated to understanding the genetic and environmental causes of neurodisabilities, such as ASD.
Public-private partnerships play a crucial role in ASD research in Canada. Genome Canada, a not-for-profit private organization that is funded by the Government of Canada, has supported ASD research through two large flagship initiatives, the Autism Genome Project and the Autism Spectrum Disorders: Genome to Outcomes Initiative. These initiatives were collaborative and international in scope, and helped identify the genetic risk factors for ASD, charting the path for the development of better diagnosis and personalized care for ASD patients.
Autism research in Australia is supported by both government funding and private organizations. Australia does not currently have legislative guidance or a national strategy for autism research. However, the government has played an important role in establishing cooperative research programs, national policies on services for persons with disabilities, and universal diagnostic standards.
Prevalence estimates of autism in Australia vary. Government statistics estimate 164,000 Australians had autism in 2015 (Australian Bureau of Statistics [ABS] Survey of Disability, Ageing and Carers), representing an overall prevalence rate of 0.7%, or about 1 in 150 people.5 However, in a nationally representative sample of children, 1.5 – 2.5% of participant children (approximately 1 in 66 to 1 in 40) were reported to be autistic.6 Overall, it is likely that the prevalence of autism in Australia is similar to that in other countries included in this analysis.
In 2013, the Cooperative Research Centre for Living with Autism (Autism CRC) was established, under the Australian Government's Cooperative Research Centers Program, as the world's first national cooperative research center focused on autism. As a private organization, the Autism CRC receives government funding to assist in achieving the goals of the research center. Autism CRC takes a whole-of-life approach to autism research, investing in projects across three research programs, "Early Years", "School Years", and "Adulthood". The organization makes a progressive commitment to inclusive research, placing the autistic community at the center of its research efforts. Autism CRC's stated mission is "to motivate, facilitate, and translate collaborative autism research across the lifespan, underpinned by inclusive practices".
In a revolutionary reform to Australian disability support services and funding, the National Disability Insurance Scheme (NDIS) came into effect in 2013 and began its national rollout in July 2016. The NDIS aims to provide all Australians (under the age of 65) who have permanent and significant disabilities with funding for supports and services. It is underpinned by a person-centred model of service delivery in which people with disabilities and their families/carers are involved in the decision-making processes that affect them. This model is designed to allow individuals more choice and control over the design of the supports and services they receive. Autistic Australians are the single largest disability group represented in the NDIS and constitute approximately one third of all NDIS participants.7
In 2016, a review of autism diagnostic practices in Australia, jointly commissioned by the Autism CRC and the Commonwealth Department of Social Services, found that diagnostic practices varied considerably between states and territories, especially in regional and remote settings.8 The review recommended a minimum national standard for autism diagnosis across Australia. In 2018, the National Guideline for the Assessment and Diagnosis of Autism Spectrum Disorders in Australia, supported by the Autism CRC and the National Disability Insurance Agency, was launched.9 The Guideline promises to provide greater consistency in the diagnostic process for autism across Australia, regardless of location.
Historically, autism research in Australia has been driven by a number of small autism-specific research centers based within universities and other research organizations. Until recently, the bulk of autism research has been funded by two federal government entities: National Health and Medical Research Council (NHMRC), which primarily funds health and medical research; and Australian Research Council (ARC), which provides funding for research across science, the social sciences and the humanities. The establishment of Autism CRC led to a significant increase in Australian investment in autism research, with funding increasing from approximately $14 million AUD between 2008-2012, to approximately $44 million AUD between 2013-2017, an increase of 215%.10 Autism CRC shifted the landscape of autism research in Australia, providing a focused and consistent national approach to autism research and facilitating nation-wide collaboration.
IACC Strategic Plan Framework
To provide a structure for this international portfolio analysis, we used the framework of the U.S.'s IACC Strategic Plan for ASD. As previously mentioned, the IACC Strategic Plan organizes ASD research around seven research priority areas represented as community-focused "questions." The questions are divided further into research objectives that address key research needs, gaps, and opportunities identified by the Committee. For the most recent edition, 2016-2017 IACC Strategic Plan for Autism Spectrum Disorder, each question in the Strategic Plan includes three to four primary objectives and one cross-cutting objective on the topic of ASD in females. In total, the U.S. monitors progress towards 23 objectives in the 2016-2017 IACC Strategic Plan.
Following the development of the IACC Strategic Plan, OARC began issuing a series of IACC ASD Research Portfolio Analysis Reports to provide the IACC with comprehensive information about the status of autism research funding among federal agencies and private research organizations in the U.S. The reports align data on individual research- related projects with a question and objective in the IACC Strategic Plan, providing an accounting of how much funding has supported projects related to Strategic Plan objectives and highlighting funding trends. This information has been used to help the IACC in their efforts to monitor ASD research efforts and track progress made each year on the objectives in the IACC Strategic Plan. This information also provides guidance to stakeholders as they make funding decisions towards ASD research.
For this report, we will be analyzing international funding trends in alignment with the seven research priority areas or "questions" in the IACC Strategic Plan. The seven research questions are represented by the following research priority areas: Diagnosis & Screening, Biology, Risk Factors, Treatments & Interventions, Services, Lifespan Issues, and Infrastructure & Surveillance (Figure 1). This report will not go further to measure international funding towards the IACC Strategic Plan's 23 objectives, as these are research goals that U.S. stakeholders established as priorities for U.S. ASD research. Instead, the purpose of using the existing U.S. IACC Strategic Plan structure is to provide a standard framework among the four countries to compare and analyze investments among different ASD research areas. Project information will therefore only be assessed at the research topic level.
Figure 1. The research priority areas of the 2016-2017 IACC Strategic Plan for ASD Research are represented by the icons to the left of each question.
1 NIH Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC). https://report.nih.gov/categorical_spending.aspx
2 Office of Autism Research Coordination, National Institute of Mental Health, on behalf of the Interagency Autism Coordinating Committee (IACC). 2016 IACC Autism Spectrum Disorder Research Portfolio Analysis Report. January 2019. Retrieved from the U.S. Department of Health and Human Services Interagency Autism Coordinating Committee website: https://iacc.hhs.gov/portfolio-analysis/2016/index.shtml
3 The NHS Information Centre, Community and Mental Health Team, Brugha, T. et al (2012). Estimating the prevalence of autism spectrum conditions in adults: extending the 2007 Adult Psychiatric Morbidity Survey. Leeds: NHS Information Centre for Health and Social Care
4 Public Health Agency of Canada. Autism Spectrum Disorder Among Children and Youth in Canada 2018: A report of the National Autism Spectrum Disorder Surveillance System. March 2018. https://www.canada.ca/en/public-health/services/publications/diseases-conditions/autism-spectrum-disorder-children-youth-canada-2018.html
5 Bent, C. A., Dissanayake, C., & Barbaro, J. (2015). Mapping the diagnosis of autism spectrum disorders in children aged under 7 years in Australia, 2010–2012. The Medical Journal of Australia, 202, 317-320; Bent, C. A., Barbaro, J., & Dissanayake, C. (2017). Change in autism diagnoses prior to and following the introduction of DSM-5. Journal of Autism and Developmental Disorders, 47, 163-171.
6 Randall, M., Sciberras, E., Brignell, A., Ihsen, E., Efron, D., Dissanayake, C., & Williams, K. (2016). Autism spectrum disorder: Presentation and prevalence in a nationally representative Australian sample. Australian and New Zealand Journal of Psychiatry, 50(3), 243-253. doi:10.1177/0004867415595287
7 National Disability Insurance Scheme (2019). COAG Disability Reform Council Quarterly Report, 31 March. Available at https://www.ndis.gov.au/about-us/publications/quarterly-reports
8 Taylor, L., Brown, P., Eapen, V., Harris, A., Maybery, M., Midford, S., ... & Whitehouse, A. (2016). Autism Spectrum Disorder Diagnosis in Australia. Are we meeting best practice standards? Brisbane, Australia: Cooperative Research Centre for Living with Autism.
9 Whitehouse, A., Evans, K., Eapen, V. & Wray, J. (2018). A national guideline for the assessment and diagnosis of autism spectrum disorders in Australia. Brisbane, Australia: Cooperative Research Centre for Living with Autism.
10 den Houting, J., & Pellicano, E. (2019). A portfolio analysis of autism research funding in Australia, 2008-2017. Journal of Autism and Developmental Disorders, advance online publication. doi:10.1007/s10803-019-04155-1