National Research Programs

NIH institutes that study autism

Several institutes within the National Institutes of Health support autism research, each from its own angle:

• NIMH (National Institute of Mental Health) says it is “supporting research to better understand the full range of symptoms that people with autism may experience” and “to find better ways to meet the individual needs of people with autism”, including earlier screening, support across the lifespan, and care for co-occurring mental health conditions. NIMH also notes that studies are underway to determine which services and supports are most helpful for autistic transition-age youth and adults.
• NICHD (Eunice Kennedy Shriver National Institute of Child Health and Human Development) describes its autism work as covering etiology, epidemiology, treatment and screening; it is a founding member of the NIH Autism Coordinating Committee and runs the Data and Specimen Hub (DASH) where researchers can request study data.
• NIDCD (National Institute on Deafness and Other Communication Disorders) funds research on communication in autism, including the Autism Centers of Excellence, and has led workshops on children with limited speech and on measuring language skills.
• NINDS and NIEHS (neurological disorders; environmental health sciences) co-fund the Autism Centers of Excellence and the Autism Data Science Initiative.

Autism Centers of Excellence (ACE)

NICHD describes ACE as “an NIH-wide initiative that supports large-scale multidisciplinary studies on autism spectrum disorders”, created in 2007 from the consolidation of two earlier programs. It has two parts: research centers, where specialist teams work in one facility, and research networks, where researchers at many sites study a single question together.

In September 2022 NIH awarded a total of $100 million over five years to nine ACEs; the program is renewed every five years. Each ACE has an external advisory board that includes autistic people and/or parents, and each adopts a plan to widen participation of under-represented groups. The 2022 centers include projects on genetic risk in infants, sleep, brain development from infancy to adolescence, digital screening, health equity across the life course, aging in autistic adults, adult mental health, late diagnosis in females and gender-diverse people, and gene–environment interaction.

The Interagency Autism Coordinating Committee (IACC)

The IACC is “a Federal advisory committee that coordinates Federal efforts and provides advice to the Secretary of Health and Human Services on issues related to autism.” It was originally established under the Children’s Health Act of 2000 and is most recently authorised under the Autism CARES Act of 2024. It includes both federal and public members so that “a wide range of ideas and perspectives are represented and discussed in a public forum.” Its publications include a Strategic Plan, a Portfolio Analysis and the annual Summary of Advances, which summarises the top 20 advances in autism biomedical and services research selected by committee members.

SPARK — a volunteer research study

SPARK is a long-term online study supported by the Simons Foundation through the Simons Foundation Autism Research Initiative (SFARI). It is open to “all individuals living in the U.S. with a professional diagnosis of autism and their family members”, at any age, and participation is free. Since its launch in 2016 SPARK reports more than 415,000 participants, including over 175,000 people with autism and their first-degree family members, and more than 37,000 autistic adults; more than 30 medical schools and autism research centers are clinical partners. Sharing DNA from a saliva sample is optional. The Nature Genetics study on our Genetics & Biology page used SPARK data.

NIH Autism Data Science Initiative (ADSI)

On September 22, 2025 NIH announced the Autism Data Science Initiative: more than $50 million in awards supporting 13 projects that draw on genomic, epigenomic, metabolomic, proteomic, clinical, behavioral and autism-services data. NIH says the projects will integrate existing data, generate targeted new data and validate findings through independent replication hubs, using methods such as machine learning, exposome-wide analyses and organoid models to study gene–environment interactions, prevalence over time, and how treatments and services may be improved. Each team is to work in partnership with the autism community. ADSI is managed by NIH’s Division of Program Coordination, Planning, and Strategic Initiatives with NIEHS, NICHD, NINDS, NIMH and NIDCD.

Separately, on May 7, 2025 NIH and the Centers for Medicare & Medicaid Services announced a data partnership whose pilot focuses on Medicare and Medicaid enrollees with an autism diagnosis, to study diagnosis trends, health outcomes of interventions, access to care and disparities, and economic burden.