2023 Profound Autism Pilot Grants

Overview

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 stalls our understanding of the supports and interventions they require to live fulfilling lives.

In recognition of the differing support needs of those who are minimally verbal or have an intellectual disability, and to encourage both the clinical and research communities to prioritize the needs of this underserved community, the Lancet Commission on the future of care and clinical research in autism called for the use of the term “profound autism.” “Profound autism” describes 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 research, ASF is releasing a focused RFA to support projects that will improve, expand, or make possible the inclusion of those with “profound autism.” These include studies of those with an intellectual disability or impaired cognitive ability (IQ measured below 50) and minimal verbal ability. In addition, the 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.

Notification of Awards: December 2023

Anticipated project start date: February 1, 2024