Short report: Patterns of US federal autism research funding during 2017–2019

Abstract

In 2017, the Interagency Autism Coordinating Committee, a federal advisory panel consisting of autism researchers and community members, recommended that funders of autism research prioritize research projects on: (1) treatments/interventions, (2) evidence-based services, and (3) lifespan issues. We sought to describe research funding since this recommendation was made. We searched the databases of the three largest federal funders of autism research in the United States (National Institutes of Health, Department of Education, and Centers for Disease Control and Prevention) for grants awarded during 2017–2019. We categorized grants as follows: autism screening and diagnosis, biology, risk factors, treatments and interventions, services, lifespan issues, or infrastructure and surveillance. We found that funding patterns remained largely consistent during 2017–2019. Biological research received a relative majority of funding (32.59%), followed by treatments and interventions (22.87%). While given higher funding priority by the Interagency Autism Coordinating Committee’s recent budget recommendation, fewer funds were awarded to research areas like services (5.02%) and lifespan issues (2.51%), indicating a misalignment between funding patterns and the Interagency Autism Coordinating Committee budget recommendation. These findings emphasize the need for autism research funding to align with the Interagency Autism Coordinating Committee budget recommendations to best meet the needs of the autism community, particularly autistic younger, middle-aged, and older adults. Lay abstract In 2017, an advisory board consisting of autism researchers and community members recommended that funders of autism research prioritize research projects on: (1) treatments/interventions, (2) evidence-based services, and (3) lifespan issues. To describe funding in these areas since this recommendation was made, we searched the databases of the three largest federal funders of autism research in the United States. We found that the largest portion of federal funding during 2017–2019 was awarded to research on the biology of autism (32.59%) and treatments and interventions for autism (22.87%). Less funds were awarded to research areas that are high funding priorities by the Interagency Autism Coordinating Committee budget recommendation including services (5.02%) and lifespan issues (2.51%). Our findings emphasize that autism research funding is not consistent with the Interagency Autism Coordinating Committee budget recommendation to increase funding particularly to services and lifespan issues. We recommend that funding patterns should shift to better align with these priorities so that autism research may better serve the needs of the autism community.

Brief Report: The Impact of Social and News Media Coverage on the Dissemination of Autism Research

“…Our findings also provide the first description, to our knowledge, of characteristics of autism research articles with most downloads, citations, social media shares, and news coverage. Interestingly, despite being the largest area of funding for autism research, studies on the biology of autism were not among the most downloaded, cited, or shared articles (Harris et al, 2021 ). In contrast, most of the highly downloaded, cited and shared articles focused on high-priority research areas identified by the IACC like treatments and interventions and services (IACC, 2018 ).…”

Applying a public health approach to autism research: A framework for action

“…The International Classification of Functioning, Disability and Health, which is the World Health Organization's framework for measuring health and disability at both individual and population levels, is consistent with this broader perspective (Bölte et al, 2014). Yet, most of the published autism research, and the funding that supports it, remains focused on basic and clinical science (Cervantes et al, 2021; Harris et al, 2021).…”

Evidence from the Autism Transitions Research Project (2017–2022): Capstone review and services research recommendations

“…Yet, few federal funding sources have explicitly supported systems‐wide research to identify mechanisms for improving access, service delivery, outcomes and wellbeing for these youth. In fact, the portion of combined federal and private funding supporting inquiry into lifespan services for autistic youth and young adults has repeatedly failed to move beyond 2% of all autism research funding (Interagency Autism Coordinating Committee (IACC), December, 2021), indicating the need for better alignment of research funding with national strategic goals aimed at meeting the needs of autistic adults (Cervantes et al, 2021; Harris et al, 2021).…”