ASF Announces Recipients of the 2022 Suzanne Wright Memorial Research Accelerator Grants
These grants support studies related to gastrointestinal issues in autism, improving quality of life for people with profound autism, and validating an autism diagnostic tool for use online
NEW YORK — August 24, 2022 — The Autism Science Foundation (ASF), a nonprofit organization dedicated to funding innovative autism research and supporting families facing autism, today announced the recipients of the newly renamed Suzanne Wright Memorial Research Accelerator Grants. Three grants are being awarded to expand the scope, speed the progress, and increase the efficiency of active autism research grants.
This year’s grantees are:
– Dr. Calliope Holingue of Johns Hopkins University, who is studying ways to expedite our understanding of gastrointestinal issues in autistic adults.
– Dr. Elizabeth Kaplan-Kahn of the Children’s Hospital of Philadelphia, who is studying ways to improve quality of life measures for individuals with profound autism.
– Dr. Yael G. Dai and Dr. Daina M. Tagavi of Boston University, who are studying the validity of the RISE Communication Play Protocol (RISE-CPP), an autism diagnostic tool that has been modified to be used online.
ASF renamed its Accelerator Grants this year in honor of pioneering autism advocate Suzanne Wright. Suzanne, who died in 2016, co-founded Autism Speaks in 2005 after her grandson was diagnosed with autism. She raised millions of dollars to fund autism research and help families impacted by autism.
“The Accelerator Grants are exactly the kind of funding mechanism that Suzanne would have loved because she was all about urgency and removing barriers to research,” said ASF Co-Founder and President Alison Singer. “We are proud to fund these three grants, which are all poised to make a positive difference in the lives of people with autism.”
The following projects were selected for 2022 funding:
Expediting Our Understanding of Gastrointestinal Issues in Autistic Adults
Dr. Calliope Holingue
Johns Hopkins University/Kennedy Krieger Institute
Up to 90% of people with autism experience GI distress. Although these symptoms often occur in children and adults, there is a lack of research focused on addressing GI dysfunction in autistic adults. A current study is gathering input from a group of autistic adults in order to develop a set of recommendations for improving GI health in adults. This grant will provide funding to expedite data collection, analysis, and dissemination of the outcomes of this study so that results can be seen up to a year earlier. These recommendations will shape future research by prioritizing the most relevant GI concerns identified by autistic adults and interdisciplinary collaborators, leading to the development of better treatments and overall approaches to GI health in people with autism.
Improving QoL Measures for Minimally Verbal Autistic Children with Cognitive Disability
Dr. Elizabeth Kaplan-Kahn
Advisor: Dr. Judith Miller
The Children’s Hospital of Philadelphia
Quality of Life (QoL) outcome measures have traditionally excluded autistic individuals with minimal verbal ability or cognitive disability. The Patient-Reported Outcomes Measurement Information System (PROMIS®) Autism Battery – Lifespan (PAB-L) is a
recently developed instrument to measure autistic QoL across the lifespan. Although PAB-L has been shown to be an acceptable QoL measure in autism, nonverbal people with cognitive disability were underrepresented among participants in the original validation studies. This grant will expand the research on the PAB-L to examine whether it is appropriate in those with profound autism, and also determine what changes, if any, should be made to effectively measure quality of life in this underserved population.
Validating an Online Autism Diagnostic Tool
Dr. Yael G. Dai
Dr. Daina M. Tagavi
Advisors: Dr. Alice Carter, Boston University and Dr. Wendy Stone, University of Washington
University of Massachusetts, Boston
Early intervention is vital for children on the autism spectrum but is often only available after a formal diagnosis. Because of the COVID- 19 pandemic, many assessments are now conducted online. This change has sometimes occurred without studying whether modifications made to support online assessments affect the outcomes of the assessments. Researchers at the University of Massachusetts Boston, the University of Washington, Rush University Medical Center, and Michigan State University recently adapted an assessment protocol (the Communication Play Protocol; CPP), to be conducted as an online assessment of ASD (RISE-CPP). ASF’s funding will allow researchers to determine if clinicians can diagnose ASD online using the RISE-CPP protocol as accurately as they can using traditional in-person assessments. An online version has the advantages of possibly reaching a more diverse community and improving opportunities for early intervention.
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 providing 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 www.autismsciencefoundation.org.
Kathy Ehrich Dowd
Autism Science Foundation