Anne Longo – Health Sciences

Project Title: “Federal Funding for Autism Research Poorly Aligns with the Priorities of the Autism Community”

Mentor: Brittany Hand, Health and Rehabilitation Sciences

Please click the link below to download the PowerPoint poster presentation. Once the poster is open, click on “slide show” then “play from start” to hear the full presentation. 

Federal Funding for Autism Research Poorly Aligns with the Priorities of the Autism Community

Autism research funding in the United States is largely informed by the Interagency Autism Coordinating Committee’s (IACC) Strategic Plan. Priority research areas identified by the IACC include autism screening and diagnosis, biology, risk factors, treatments and interventions, services, lifespan issues, and infrastructure and surveillance.  The IACC, along with members of the autism community, noted that the areas that need more funding are treatments and interventions, services, and lifespan issues. However, the IACC found that these research areas received less funding in 2016 than other priority areas. The purpose of this study was to describe the funding patterns of the three largest United States federal funders of autism research since this IACC recommendation was made.

We searched the databases of the three largest US federal funders of autism research: the National Institutes of Health, Department of Education, and Centers for Disease Control and Prevention. Our search strategy identified 1,417 unique, newly funded grants during 2017-2020. Of these, we identified 378 grants that were focused on autism specifically. We categorized grants into the seven priority research areas of the IACC Strategic Plan and performed descriptive analyses on the amount of research funding allocated to each area.

Our results indicate a continuing trend in the allocation of autism research funding, where a relative majority of the funds are designated to biology-focused research and not towards other topics such as services, lifespan issues, and treatments and interventions. This is concerning, because many individuals in the autism community disagree with the prioritization of biological research funding in autism. Thus, further conversation is warranted to identify effective strategies to better align autism research funding with the research areas most important to those in the autism community. In shifting research funds to these three priority areas, a number of positive outcomes could occur, including improving the healthcare experiences of autistic adults, and developing and testing medications and interventions designed to help autistic individuals achieve their goals, which may ultimately lead to an improved quality of life and participation in valued activities.

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