ASF Launches First-of-Its-Kind ‘Profound Autism’ Funding Mechanism
This new funding opportunity will support research on those with the highest support needs and comes less than a year after The Lancet formally endorsed the term ‘profound autism’ to help support this vulnerable, underserved population
NEW YORK — July 18, 2022 — The Autism Science Foundation (ASF), a nonprofit organization dedicated to funding innovative autism research and supporting families facing autism, today announced a new, focused funding mechanism to support research on individuals with “profound autism” and those with severe and challenging behaviors including impulsivity and aggression. ASF’s new funding mechanism is intended to support projects that will improve, expand, or make possible the inclusion of those with “profound autism” into research studies to ensure that scientific discoveries help individuals across the spectrum.
In December 2021, The Lancet Commission on the Future of Care and Clinical Research in Autism – a group of autism researchers, advocates, and experts including ASF President Alison Singer – called for the use of the term “profound autism” for the first time in a peer-reviewed journal to distinguish individuals who have high dependency needs and have historically been underrepresented in research.
Per The Lancet, the term “profound autism” applies to autistic people who are at least 8 years old, minimally verbal or nonverbal, have an IQ below 50, are not able to advocate for themselves, and will likely require 24-hour access to an adult who can care for them for the rest of their lives.
“As both a longtime autism advocate and mother of a 25-year-old daughter with profound autism, I am intimately aware of how people on the severe end of the autism spectrum have been significantly underrepresented in research for decades,” said ASF Co-Founder and President Alison Singer. “I am incredibly proud that ASF will debut this new funding mechanism, which will be an important step toward addressing the disparity in who benefits from research.”
“The Lancet Commission on the Future of Care and Clinical Research in Autism proposed the concept of ‘profound autism’ and called for targeted research into this understudied population because of concerns that sometimes, within the complex heterogeneity of autism, the immediate practical needs of those children and adults with autism and significant intellectual and language limitations are not sufficiently recognized and addressed,” said Lancet Commission Co-Chair Dr. Catherine Lord, who is also a professor at UCLA’s Center for Autism Research & Treatment and a member of ASF’s Scientific Advisory Board. “The Autism Science Foundation has stepped up to address this challenge through this new funding mechanism.
“ASF has long heard from parents caring for children with profound autism who are exhausted and desperate for more research to be devoted to this vulnerable and underserved population,” said ASF Chief Science Officer Dr. Alycia Halladay. “ASF is proud to offer these pilot grants to fund studies that are aimed at improving research in this area.”
Applications for the profound autism pilot grants are due on Sept. 16 by 5 p.m. ET. To view the full request for applications, click here.
About the Autism Science Foundation
The Autism Science Foundation (ASF) is a 501(c) (3) public charity. Its mission is to support autism research by providing funding to scientists and organizations conducting autism research. ASF 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. To learn more about the Autism Science Foundation or to make a donation, visit www.autismsciencefoundation.org.
Kathy Ehrich Dowd
Autism Science Foundation