The first-of-its-kind funding mechanism will support research on people with autism who are most in need of support.
New York, January 11, 2023 /PRNewswire/ — The Autism Science Foundation (ASF), a non-profit organization dedicated to funding groundbreaking autism research and supporting families facing autism, today announced announced the recipients of the first Severe Autism Pilot Grant. Four grants will be awarded to project researchers investigating ways to improve sleep, neuropsychiatric regression, self-harm, and access to communication systems for people with severe autism.
Autism Science Foundation Wins First Round of Severe Autism Pilot Grants
ASF is the first to call for the use of the term “severe autism” by the Lancet Commission on the Future of Autism Care and Clinical Research (a group of autism researchers, advocates and professionals). Less than a year after, we launched this new funding mechanism. People with autism with minimal language ability or intellectual disability.
“Recognizing that severe autism is very different from the autism represented in sitcoms and movies, we are funding research that specifically focuses on the needs of this grossly underfunded and underrepresented population. It’s time to deliver,” said ASF co-founder and president Allison Singer.
“These new projects ensure that people across the spectrum are represented in autism research,” said ASF Chief Scientific Officer Dr. Alicia Halladay“With 40 applications for these grants, the initiative, which shows a broad and growing interest in serving the autism community, will support two great patient advocacy groups, CureShank and the Phelan-McDermid Syndrome Foundation. We are excited to partner with.”
The following projects were selected for funding.
Improving access to communication systems for people with severe autism in diverse communities
Charlotte DiStefano,doctorate
children’s hospital Los Angeles
Individuals with severe autism attempt to communicate using a variety of methods, including the Augmented Alternative Communication (AAC) system. These systems, ranging from photographs and communication boards to speech-producing devices and iPads, have been shown to improve overall communication and facilitate spoken language development. However, these AAC systems are not always accessible to all families.Leveraging the Children’s Hospital Patient Population Los Angeles (40% of whom are uninsured and 65% are of ethnically diverse backgrounds), this study examines the factors that influence access to and use of AAC systems.
Testing a new device to study home sleep in children with severe autism
Dimitrios Milonas,doctorate
Massachusetts General Hospital
Sleep disturbances are very common in individuals with severe autism and exacerbate emotional disturbances, cognitive deficits, and defiant behavior. Existing research on autistic sleep mostly excludes children with severe autism. This omission has been blamed on the burden, expense, and difficulty of laboratory studies of sleep in children with severe autism. We will expand the ongoing sleep study to add a cohort of The aim of this study is to develop a minimally invasive headband device that measures sleep quality at home and provides data on specific electroencephalogram patterns during different stages of sleep in people with and without autism. is to verify the use of
Modeling neuroinflammation and neuropsychiatric regression in severe autism
Shennan Chao,doctorate
Yale University
Individuals with severe autism may exhibit neuropsychiatric regression. This may include catatonia, excessive aggression, and cognitive decline. This regression is associated with infection in girls with Phelan-Her McDiarmid Syndrome, a genetic condition associated with severe autism. There is some preliminary evidence linking the administration of anti-inflammatory drugs to the reversal of this regression. and whether these effects are mediated by anti-inflammatory drugs.
This project
Cure shank and the Phelan McDiarmid Syndrome Foundation
Investigating the relationship between self-harm and medical conditions in patients with severe autism
Giacomo Vivanti,doctorate
Drexel University
Self-harming behaviors such as headbanging, scratching and biting are common and poorly understood in people with severe autism. Some of these behaviors may be responses to pain or discomfort caused by pre-existing medical conditions or unmet medical needs, but this should be evaluated in people with limited communication skills. As a result, the medical needs of people with severe autism are not always identified through regular physical examinations. Together, we will examine the relationship between medical conditions and self-harm and determine whether interventions that address the medical condition can reduce self-harm. We assess the feasibility, acceptability and effectiveness of new protocols designed to facilitate the success of clinical trials.
About the Autism Science Foundation
The Autism Science Foundation (ASF) is a 501(c) (3) public charity. Its mission is to support autism research by funding scientists and organizations conducting autism research. ASF also provides information about autism to the public to help raise awareness about autism spectrum disorders and the needs of individuals and families affected by autism. To learn more about the Autism Science Foundation or to donate, visit www.autismsciencefoundation.org.
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