Request for Applications: 2024 Profound Autism Pilot Grants
RFA Released: August 1, 2024
Applications Due: October 18, 2024 5:00 PM ET
Notification of Awards: February 2025
Introduction
The Lancet Commission on the Future of Care and Clinical Research in Autism introduced the term “profound autism” and encouraged its use 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.
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 the generalizability of research discoveries and impedes understanding of the supports and interventions they require to live fulfilling lives. There is an immediate need for research to identify the specific and unique needs of individuals with profound autism.
While the Lancet definition does not specify the presence of severe, intense and dangerous behaviors, this RFA also includes research on severe and challenging behaviors including self-injury, aggression, PICA, wandering and irritability, which are prevalent in those with profound autism but not part of the Lancet definition.
This RFA specifically calls for:
1) pilot studies to identify or characterize the underlying biological mechanisms of profound autism (including model systems);
2) examination of the preliminary efficacy of a behavioral or pharmacological treatment for core or co-morbid symptoms of profound autism or severe, intense and dangerous behaviors;
3) projects which address challenges in recruitment, retention or data collection in individuals with profound autism.
For the purposes of this RFA, profound autism is defined as minimally or non-verbal, and/or IQ less than 50, and requiring the need for 24/7 care to ensure safety. Individuals with Profound Autism may or may not exhibit severe and dangerous behaviors. Research on severe and dangerous behaviors does not need to be exclusive to those with Profound Autism.
Preference will be given to those studies that include a control arm, or a group of those with non-profound autism.
Requirements
The award may be used to cover supplies or salary support and fringe for staff, including post-doctoral fellows, tenured or tenure-track faculty or other percent effort. It also may be used to cover small amounts of consulting costs.
This year, the mechanism may also be used to support a one-year, mentor-based pre-doctoral fellowship focused on the topics described above. If the pre-doctoral applicant is the PI, the application must include both a training plan and a letter of recommendation from someone other than the mentor named on their application.
All investigators must include a letter of support from an advocacy organization involved in profound autism. The advocacy organization is expected to act in an advisory capacity, help with recruitment, and support dissemination. Examples of organizations that have written strong letters in the past include the Profound Autism Alliance and the National Council on Severe Autism. 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 are also good choices. Many of these groups are represented in the Alliance for Genetic Etiologies in Neurodevelopmental Disorders and Autism (AGENDA). Collaborations and partnerships with local organizations or other autism service organizations are also very welcome. Examples include the Bancroft School and The Center for Discovery. These are examples; this is not an exhaustive list.
Awards
The Autism Science Foundation will award multiple pilot grants determined by available financial resources. The term of the award will be one year and the grant will support up to $35,000.
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 be either enrolled in a pre-doctoral training program, or hold an M.D., Ph.D., EdD, or ScD and currently hold a position at a university or institution, or an organization with 501c3 status. U.S. citizens may be enrolled in universities inside or outside of the United States. Non-U.S. citizens may be enrolled in universities inside or outside of the U.S Post-doctoral fellows may receive stipend support for a percentage of their effort spent on the project.