Request for Applications: 2023 Profound Autism Pilot Grants
RFA Released: July 17, 2023
Applications Due: September 15, 2023 5:00 PM ET
Notification of Awards: December 2023
Register for the Q&A for the Profound Autism Pilot Grants HERE
Introduction
Past research has established that individuals with autism exhibit a wide range of abilities and disabilities and that those with challenging or problematic behavior, minimal verbal ability, and/or intellectual disability are demonstrably underrepresented in research. Their exclusion prevents generalizability of research discoveries and impedes our understanding of the supports and interventions they require to live fulfilling lives.
The Lancet Commission on the Future of Care and Clinical Research in Autism determined that term “profound autism” should be used to describe autistic people who are at least 8 years old, minimally verbal or nonverbal, have 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.
In order to ensure that individuals across the spectrum are included in the research, ASF is interested in supporting projects that will either a)increase the opportunity for people with profound autism to participate in research or will b) identify and characterize the underlying biological mechanisms of profound autism, or will c) develop treatments specifically for those with profound autism.
In addition, this RFA welcomes research broader in scope than the Lancet definition of “profound autism” to include research on severe and challenging behaviors including self-injury, aggression, and irritability, and research focused on children under age 8.
Investigators must include a letter of support from an advocacy organization involved in profound autism. These organizations can include Patient Advocacy Groups (PAGs) that represent families with idiopathic autism or with rare genetic syndromes that result in a high prevalence of neurodevelopmental disorders, including autism. Many of these groups are represented in the Alliance for Genetic Etiologies in Neurodevelopmental Disorders and Autism (AGENDA). Investigators may also partner or collaborate with groups like the National Council for Severe Autism (NCSA) or the Profound Autism Alliance. They may also choose to collaborate with a local organization or another advocacy organization that focuses on the needs of people with profound autism.
Awards
Autism Science Foundation will award multiple pilot grants determined by available financial resources. The term of the award will be one year and will support up to $35,000 in costs for one year. This award cannot be used to cover tuition payments. No portion of these funds shall be used to cover indirect university costs.
Eligibility and Requirements of the Project
Applicants for this award must hold an M.D., Ph.D., EdD, or ScD, and hold a faculty or postdoctoral position at a university or institution, or an organization with 501c3 status.
U.S. citizens enrolled in or employed at universities inside or outside of the United States are eligible to apply.
Non-U.S. citizens enrolled in or employed at universities based inside or outside of the U.S. are also eligible to apply.