Profound Autism Pilot Grants

Profound Autism Pilot Grants

Status: ACTIVE
Funder: Autism Science Foundation
Amount: Up to US $35,000
Last Updated: September 03, 2025

Summary

The Profound Autism Pilot Grants, funded by the Autism Science Foundation, aim to support research focused on individuals with profound autism. This includes those who are minimally verbal, have severe intellectual disabilities, and require lifelong care. The initiative seeks to address the critical gaps in understanding the unique needs of this population, particularly regarding their challenging behaviors, which are often overlooked in existing research. This funding opportunity is essential for enhancing the quality of life for those affected.

Overview

Background 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.

Eligibility

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