Overview
Funding autism research is at the core of our mission.
We prioritize funding clever early-career investigators with cutting-edge ideas who need seed money to get their research off the ground. ASF pairs these researchers with established scientists who provide mentorship and training. The government and other funders have decreased funding for training grants, but we are committed to helping early-career scientists gather the initial data they need to attract major funding from the National Institutes of Health (NIH), all while encouraging the best and brightest researchers to dedicate their careers to autism.
Current Grantees
Profound Autism Pilots Grants
Charlotte DiStefano, Ph.D. | Children’s Hospital of Los Angeles
Improving Access to Communication Systems Among Those with Profound Autism in Diverse Communities
Individuals with profound autism may use a number of methods to try to communicate, including augmentative and alternative communication (AAC) systems. These systems range from pictures and communication boards to speech-generating devices and iPads and have been shown to improve overall communication and promote spoken language development. However, these AAC systems are not always accessible to all families. Utilizing the population of patients at the Children’s Hospital of Los Angeles (of which 40% are uninsured and 65% are from an ethnically diverse background), this study will examine factors influencing access to and use of AAC systems.
Dimitrios Mylonas, Ph.D.| Massachusetts General Hospital
Testing a Novel Device to Study Sleep at Home in Children with Profound Autism
Sleep problems are highly prevalent in individuals with profound autism and exacerbate emotional disturbances, cognitive deficits, and challenging behaviors. Existing studies of sleep in autism have mostly excluded children with profound autism. This omission has been blamed on the added burden, expense, and difficulty of studying sleep in children with profound autism in a lab setting. This grant will expand a sleep study currently in progress to add a cohort of children with profound autism. The goal of the study is to validate the use of a minimally invasive headband device that measures sleep quality at home and provides data on specific brainwave patterns during different phases of sleep in people with autism vs. people without autism.
Sheng-Nan Qiao, Ph.D.| Yale University
Modeling Neuroinflammation and Neuropsychiatric Regression in Profound Autism
Individuals with profound autism may sometimes exhibit neuropsychiatric regression, which can include catatonia, hyper aggression, and cognitive decline. This regression has been linked to infection in girls with Phelan McDermid Syndrome, a genetic condition associated with profound autism. There is some preliminary evidence linking the administration of anti-inflammatory drugs to the reversal of this regression. This animal model study will look at whether mice with the genetic mutation associated with Phelan McDermid Syndrome are more susceptible to the effects of inflammation-inducing drugs, and whether these effects can be mediated by inflammation-reducing drugs.
This project is co-sponsored by CureShank and the Phelan-McDermid Syndrome Foundation
Giacomo Vivanti, Ph.D.| Drexel University
Examining the Relationship between Self Injurious Behavior and Medical Conditions in People with Profound Autism
Self-injurious behaviors such as headbanging, scratching, and biting are common in individuals with profound autism but are poorly understood. Some of these behaviors may be responses to pain or discomfort caused by a pre-existing medical condition or unmet medical need, but this is difficult to assess in those with a limited ability to communicate. As a consequence, the medical needs of people with profound autism may not always be identified through routine healthcare visits. Working with a large residential and day program service provider, this study will examine the relationship between medical conditions and self-injurious behaviors, and determine whether interventions addressing medical conditions could alleviate self-injurious behaviors. This project will also assess the feasibility, acceptability, and effectiveness of a new protocol designed to facilitate successful healthcare visits for people with profound autism.
Undergraduate Summer Research Grants
Vidya Gadikota | University of North Carolina, Chapel Hill
Mentor: Laura Klinger, Ph.D.
Improving Healthcare Access for Adults with Profound Autism
Adults with profound autism have unique healthcare needs that are often overlooked by providers. This student will expand an existing project to add a cohort of middle and older-aged autistic adults in a residential facility to measure overall health, co-occurring conditions, healthcare quality & satisfaction, and quality of life. Determining how co-morbid health conditions change as autistic adults age will enable services to be delivered that better meet people’s needs.
Kaleb Phelps | University of South Carolina
Mentor: Jessica Bradshaw, Ph.D.
Understanding the Diagnostic Experiences of Black Families
Large gaps exist in healthcare for Black autistic children, yet the lived experiences of these families are rarely investigated or considered when designing research studies. This student will collect data from families, including information about their diagnostic experience and the factors that matter most to them. The results will help researchers and healthcare providers develop culturally competent interventions for Black families across the world.
Olivia Wong | Child Mind Institute
Mentor: Adriana DiMartino, M.D.
Determining the Role of Early Restrictive and Repetitive Behaviors in Downstream Autism Outcomes
Restricted and repetitive behaviors (RRBs) range from hand flapping to debilitating self-injury. This student will investigate the biological basis for the broad range of RRBs by examining the development of the circuits in an area of the brain called the striatum. Pictures of the brain will be collected and analyzed at multiple time points in individuals from 1-4 years of age and matched with the presence and type of RRBs and later outcomes, like real-world function or adaptive behavior. The results will help identify critical windows for brain development when intervention can be most beneficial.