Profound Autism Pilot Grants Awarded to 3 Additional Groups

January 10, 2024 — The Autism Science Foundation (ASF), a nonprofit organization dedicated to funding innovative autism research and supporting families facing autism, today announced the recipients of its second round of profound autism pilot grants. Three grants will be awarded to researchers at the University of Pennsylvania, Washington University in St. Louis and Yale University, for projects examining the use of wearable devices to predict severe behaviors in school settings, determining if vision correction surgery improves social functioning, and modernizing biomarkers to improve access to research for people with profound autism.

ASF launched this new funding mechanism less than a year after The Lancet Commission on the Future of Care and Clinical Research in Autism – a group of autism researchers, advocates, and experts – first called for the use of the term “profound autism” to describe individuals with autism who have minimal verbal ability or intellectual disability. People with profound autism are often excluded from traditional autism research.

“ASF is committed to funding research studies that focus specifically on improving the lives of this significantly underrepresented population,” said ASF Co-Founder and President Alison Singer. “These studies will test new interventions that can increase access to schooling and other community activities for people with profound autism, as well as build needed infrastructure to support future research opportunities for this population.”

Alycia Halladay, PhD, Chief Science Officer at the Autism Science Foundation added “Each of these projects addresses a problem experienced by families with profound autism, and allows for not only better representation in research studies, but also improved quality of life.”

The following projects were selected for funding:

Improving Social Behavior and Adaptive Functioning in Children with Profound Autism Through Vision Correction
Margaret Reynolds, MD, MSc
Washington University in St. Louis

Vision problems, including far- and near-sightedness, affect up to 44% of children with autism. These deficits may lead to sensory deprivation and impair skills related to autism, including attention and communication. Refractive errors are usually corrected by the use of eyeglasses or contact lenses, but most individuals with profound autism cannot tolerate wearing them and may benefit from vision-correcting, refractive surgery. In this study, pediatric ophthalmologist Dr. Margaret Reynolds will examine social reciprocity, social interaction, and adaptive behavior in children with profound autism who have had this vision-correcting surgery. The methods used to track these outcomes do not rely on the child’s speech or language ability, so those who are non- or minimally-verbal can participate. While at present only a few doctors perform this surgery in children, this relatively simple medical procedure could lead to improved quality of life and function.

Reducing Severe Behaviors in School Settings for Children with Profound Autism Using Wearable Devices
Heather Nuske, PhD and David Mandell, ScD
University of Pennsylvania

Studies using wearable devices suggest that severe behaviors like aggression and self-injury are often preceded by physiological signs that may reflect emotional dysregulation and stress, such as increased heart rate and sudden movements. In order to best manage these situations and support children with profound autism in school settings, researchers at the University of Pennsylvania developed the KeepCalm app. This app works with a wearable device and allows educators to monitor their students in real-time. The app’s interactive learning feature helps train teachers to identify early signs of distress and use appropriate de-escalation strategies before injurious behavior occurs. This information can also be shared with parents, so that they can use the same strategies at home. This project will assess the KeepCalm system in educational teams and modify the application and training to specifically accommodate students with profound autism.

Adapting Biomarker Assays for Profound Autism
Adam Naples, PhD
Yale University

Individuals with profound autism have been historically underrepresented in research. Though profoundly autistic individuals make up roughly 27 percent of the ASD population, they represent only a small portion of research participants. Consequently, research findings in the field underrepresent profoundly autistic individuals. One of the most significant reasons for this underrepresentation is the need for research participants to follow spoken or written instructions and maintain engagement with a task. In this project researchers will test a novel interactive experimental delivery system that helps people participate in research without needing to understand complex instructions. The experiment uses computer vision systems that reward participants for sitting still and attending, rather than asking a participant to sit quietly and attend to a computer screen without incentive. Using this method, researchers will study two promising biomarkers, the balance of neural activity in the brain using electroencephalography (EEG) (which is associated with sensory sensitivity), and arousal using pupil diameter (which is associated with symptoms like disordered sleep and aggression). The goal is to develop a novel system for including profoundly autistic individuals in research.

About the Autism Science Foundation
The Autism Science Foundation (ASF) is a 501(c) (3) public charity that provides 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  

Media Contact
Katie Madgett
Autism Science Foundation