The JCC of Greater New Haven has joined with Project CASY (Community Autism Socials at Yale) to not only help speed up the research and understanding of autism but also to create a safe, active, inclusive and life-long community for individuals with autism as well as their families, friends, and others who support them.
Project CASY targets young adults and adults diagnosed with autism spectrum disorder and is dedicated to supporting research projects, training and novel interventions to enhance their lives. In just five years, the program has grown to include nearly 800 members.
This new partnership has generated several exciting upcoming events planned at the JCC in the next few months, noted Scott Cohen, JCC Executive Director, starting with CASCADE, a modernized version of the old-fashioned video game arcades specifically customized for the autism community. CASCADE will be offered at the JCC on Saturdays, Nov. 9th and again on Dec. 7th from 11 a.m. to 3 p.m.
A SPARK (Simons Foundation Powering Autism Research for Knowledge)-focused event is planned on November 16th from 10 a.m. to 2 p.m. A landmark autism research project, SPARK aims to build a research community of tens of thousands of individuals with autism and their families, who will be asked to share medical and genetic information with scientists and to agree to be contacted about future research studies. The data shared with SPARK researchers will power important new autism research. The Nov. 16th event, called SPARK Fall Fest, is an Autism Community Resource Fair. Expert speakers and activity rooms will be available.
The Project CASY/JCC partnership first began in June 2019 when the JCC hosted the first annual Autism Pride Day Extravaganza event at its facility. “From there, a beautiful partnership was born,” Cohen said; “This partnership aligns very closely with the JCC’s mission by opening the facility to all people, serving the needs of the community as a whole and creating an inclusive environment.”
Cohen continued: “Our goal is to showcase the wonderful things the JCC has to offer for ALL people while also providing a safe and welcoming place where the Yale Child Study Center can continue to meet the needs of the study.”
Cohen said the JCC’s inclusive programs will continue to grow and develop thanks to powerful partnerships like these, which provide expert help in reaching an otherwise underserved population.
Dr. Roger Jou, MD, PhD, MPH, an instructor at the Yale Child Study Center, first created Project CASY in April of 2014 on meetup.com to “improve quality of life for the autism community” and “fill voids in social recreation and supports for families.” Dr. Jou’s long career in the field of autism research first began when he was a medical student at the University of Pittsburgh, where he used neuroimaging to study the differences in brain structure.
“The JCC of Greater New Haven plays a major role in all Project CASY activities given the shared values and different resources which complement one another,” Dr. Jou said. “We will partner with the JCC to host events for SPARK, the largest genetic study of autism ever with the goal to speed up research and advance the understanding of autism. Project CASY is all about community and so is the JCC,” Dr. Jou explained. “The partnership will bring us even closer to understanding the autism community and their needs. This will spawn the research questions and studies that have bigger and more immediate impact on quality of life for the autism community.”
While the vast majority of Project CASY members live in Connecticut, Dr. Jou pointed out that the JCC's network is much more extensive so the partnership could “potentially accelerate autism research by including the broader JCC network.”
As not only a researcher but also a psychiatrist who works with the autism community, Dr. Jou said his most important focus is on improving quality of life for those on the autism spectrum and identifying the “seemingly infinite ways to do this.”
“The more I learn about autism, the less I think of it as a disorder,” he admitted. “It really is a difference between human beings but one that cannot be easily seen. Research is needed to learn how society can be more inclusive and leverage the strengths of its most diverse individuals.” He stressed that Project CASY is “just one piece of the larger ecosystem that will improve and sustain quality of life for the autism community.”
Over the past year, Dr. Jou said he has seen the rapid development of this ecosystem to include organizations outside the Yale community, including the SPARK clinical site network and partnerships with Autism Services & Resources Connecticut (ASRC) and the JCC of Greater New Haven.
Dr. Jou said events are now planned across the state and he encourages everyone to join the group to participate in all aspects of the ecosystem “whether it be leading a group in the community or participating in one of our research studies.”
For more information on Project CASY, contact Dr. Jou at (203) 927-3970 (firstname.lastname@example.org).