The first non-profit and only all-volunteer run organization to focus on adult autism in the U.S., The Daniel Jordan Fiddle Foundation for Adult Autism was founded in 2002 and named in honor and memory of Danny Fiddle. In 2014, the foundation joined with the Yale Child Study Center (YCSC) to launch The Daniel Jordan Fiddle Foundation Adult Autism Research Fund, led by Assistant Clinical Professor Roger Jou, MD, PhD, MPH.
The Yale fund is the first in the nation dedicated exclusively to supporting research projects related to adults living with autism. The endowed funds are used to establish community-based programs creating connections for participants that also shape future research. In line with this, Jou and his team work to identify safe and effective interventions addressing the core symptoms of autism that can be implemented in community settings. The Jou Group provides ongoing clinical care and works with communities to find new ways to provide or supplement routine treatment for individuals living with autism.
Before joining the YCSC faculty, Jou completed his fellowship at the center in 2011. At that time, he had about ten years of experience as a clinician and researcher dedicated to autism. “The next step of my career would focus on adults, given my interest in the entire lifespan,” he said. After an extensive search of organizations dedicated to autism in adulthood, The Daniel Jordan Fiddle Foundation was clearly identified as both pioneer and leader. He thus submitted an application to the foundation’s signature program, and this led to the establishment of the fund at Yale.
Since that time, Jou says that the work supported by the fund has evolved substantially, “as we learn about the priorities of autistic adults and their families. Adult autism research was underdeveloped at the time, so we started our own program to connect with autistic adults and their families.” This program is known as Community Autism Socials at Yale, and Jou says that initial meetings were attended by parents, but this quickly became a community dedicated to autistic adults.
“We learned first-hand what was most important to the participants,” explains Jou. “The guiding principle was always how we could help the most people with limited available resources, which led to its evolution as a program focused on creating social recreation groups and learning opportunities.” It became clear to Jou and his team through community interactions that the work should prioritize quality of life, which meant a more direct connection between programming and impact on families.
“Ultimately, our efforts converged on developing and optimizing autism communities using a combination of traditional in-person interactions and available technology. Since the pandemic, our ability to leverage technology has grown substantially due to earlier social distancing guidelines,” added Jou. He says that as pandemic-related restrictions are relaxing, he and his team are “learning how to combine in-person and remote interactions to develop, optimize, and sustain autism communities that support immediate and life-long improvements in quality of life.”
Fiddle Foundation Founder and Executive Director Linda J. Walder emphasizes that “research headed by leading scientists in the field of autism is the vision of this unique fund established to focus on expanding understanding of how adults age with autism and the impacts of the diagnosis on all aspects and phases of their adult lives.” She adds, “Currently, we have little to no critical knowledge about aging and autism.”
The guiding principle was always how we could help the most people with limited available resources, which led to its evolution as a program focused on creating social recreation groups and learning opportunities.
Roger Jou, MD, PhD, MPH
As the Fiddle Foundation celebrates its 20th anniversary, Walder shares that the organization’s mission is focused on “trailblazing the future of adult Autism with endowed funds, each focused on a different aspect of our mission including housing, jobs, public policy, family support, artistic expression, and community life.”
In addition to the fund at Yale, the foundation provides endowed funds at Brown University, Rutgers University, Arizona State University, and the University of Miami. Walder says that these institutions “were specifically chosen based upon demonstrated expertise that assures groundbreaking leadership today and for generations to come, as a matter of human rights. From the United Nations to Beijing, China and in communities throughout the United States, Daniel Jordan Fiddle Signature Programs, resources, and Autism acceptance initiatives have demonstratively enhanced awareness of the strengths, talents, and individuality of adults with Autism.”
When asked about her hopes for the future of the foundation, Walder points to the importance of collaboration as central to the mission of the organization from the start. She says, “It is my belief that when caring and talented individuals join forces, the best ideas and execution of those ideas happens. Our partnership with Yale exemplifies this point as we move forward with strong community partners, professionals and those affected by Autism to understand Autism throughout the lifespan. The research supported by our Fund will help communities everywhere develop pathways of engagement and purpose for adults with Autism as valuable members of society. It has and will always be about creating the best life possible for every individual, as I had wished for my son Danny.”
Jou says of the future of this work that he would like to see an optimized community and social connection across the United States, and eventually across the globe. “The community would operate more like a mutual aid fellowship dedicated to supporting autistic life and would also include professionals, families, and other allies. It would have robust principles and tradition and value science and research. support autistic quality of life.”
To make a gift in support of this program, please contact Matthew Farrenkopf, Associate Director of Development, at matthew.farrenkopf@yale.edu or 203-436-8543.