Opening Doors and Opening Hearts: The Daniel Jordan Fiddle Foundation
Losing a child is commonly referred to as every parent's worst nightmare. Yet this is exactly what Linda Walder Fiddle experienced in 2000, when her son, Daniel Jordan, passed away suddenly at age nine. Somehow, from the ashes of that deeply sorrowful time emerged a new creative vision, and a way to honor the life of her son, who had an autism spectrum diagnosis. Two years after Daniel’s death, Walder Fiddle started the Daniel Jordan Fiddle Foundation, a nonprofit organization that has since become a leader in services, supports, and advocacy efforts for adults on the autism spectrum.
The Focus on Adults
The Daniel Jordan Fiddle Foundation, which has its headquarters in Ridgewood, New Jersey, began in 2002. At the time, it was the only national autism organizations to focus solely on adults on the spectrum. Other autism advocacy organizations that existed at the time did not specify an adult focus, and spent most of their energies and monies on services such as early childhood intervention programs.
Why did the DJF Foundation choose to focus its efforts on supporting adults on the spectrum, given that Daniel Jordan Fiddle was a child when he passed away? Walder Fiddle, who serves as the organization’s Executive Director, says, “Ten years ago, when I decided to start the DJF Foundation, I decided to focus on adults because nobody else was. During my son's lifetime, I was concerned about what would happen when he aged out of school programs. Over a dozen years ago, I had these concerns as a parent … There was very little available [for adults on the spectrum] fifteen years ago. Today there's so much more; it's very gratifying to see.” And, as Walder Fiddle wrote in a letter to supporters, she also sees her work with the DJF Foundation as a way to continue in her role as Daniel's mother, a way in which she can continue to love and honor him.
Walder Fiddle recalls that when Daniel was alive, she experienced the same fears and looming questions that keep other parents of children on the spectrum awake at night: Will my child lead a rich, full life? Will he have opportunities to grow and develop in his work and relationships? Will he be celebrated for his gifts, and not ostracized for his differences? Where will my child live? How will he find housing and receive the personal, social, vocational and behavioral supports that he may need?
The DFJ Foundation works to help ASD adults, parents, and caregivers answer those big questions with confidence. Its mission is multifaceted. First, it seeks to actively support adults on the spectrum, in terms of professional services, personal supports, and self-advocacy programs. Next, it works to change the societal perception of adults with autism. The DJF Foundation's aim is for adults on the spectrum to experience community inclusion and living to their fullest potential in their everyday lives. In pursuit of these goals, the nonprofit, which is staffed solely by volunteers, has an active calendar. All across the nation, the Foundation hosts programs, coordinates events, provides grants and scholarship funds, and offers accessible, up-to-date resources for individuals on the spectrum.
A Catalyst for Change
The DJF Foundation was a catalyst for change in Walder Fiddle's life, giving her purpose and clarity in a time of grief. In a similar way, the organization has brought encouragement and support to families who had nowhere else to turn. When thinking back to the start of the foundation, Walder Fiddle remembers, “Starting out, the biggest challenge was to find organizations to partner with, who realized that autism is a lifespan challenge, not just affecting children. I reached out to service providers that I knew, and I said, 'Would you serve adults?' It was coming to them with ideas, using their expertise, and helping to open a door for adults on the spectrum.”
This simple approach—reaching out to existing autism organizations and asking them to expand their services—has been remarkably successful. Of the DJF Foundation's first project, Fiddle recalls being inspired to contact the Executive Director of the Jewish Association for Developmental Disabilities (J-ADD), and proposing that they pool their resources to start a hotline and create a resource guide for adults on the spectrum. Ten years later, the DJF Foundation hotline is still serving adults with autism, and the model has been replicated in several other communities across the country.
This organic evolution has characterized many DJF Foundation programs. However, though the Foundation seeks to serve adults on the autism spectrum in all areas of their lives, they have recently expanded their focus. At present, the DJF Foundation seeks to create templates for other communities and organizations to utilize. “Two years ago, we decided we wanted a broader scope,” says Walder Fiddle. “What I have discovered as a grant-giving organization is that, to affect a larger amount of people, we need to create blueprints for adult life. We have co-developed programs that we feel can be shared and developed in communities everywhere.”
Current Focus and Projects
With this model in place, the DJF Foundation continues to expand. When asked about current projects for 2011, Walder Fiddle lists a vast array of partner organizations with whom the DJF Foundation is creating programs for adults on the spectrum. From horseback riding programs that teach life skills to residential programs to vocational programs where young adults take on job assignments in their communities, the DJF Foundation works with different organizations across the country. These varied collaborations have served to strengthen the DJF's commitment to supporting individuals with autism in all areas of their adult lives.
When asked about current programs that are bringing new excitement to the DJF Foundation staff, Walder Fiddle mentions a partnership with Global and Regional Asperger Support Partnership (GRASP) to create a peer support group program for adults with AS over 50. Supporting senior adults on the spectrum has become a priority. In Walder Fiddle's words, “This is an avant-garde program, because the people who are 50 have different needs from those who are 20. Many of these individuals were not diagnosed until recently … and there's a group of people in every community in the country who would benefit.”
Another recent project, the DJF Foundation Health and Wellness Program at Chapel Haven, puts an emphasis on empowering adults on the autism spectrum to lead a healthy lifestyle. Walder Fiddle describes the residential support program at Chapel Haven as being remarkable, yet she notes, “There was no health and wellness component [until the DJF program began], and I think it's vital for people with special needs to learn about how to live well and exercise.” Once again, the program at Chapel Haven was designed with the intent of replication, and Walder Fiddle hopes that similar programs can be implemented by other residential providers.
The DJF Foundation's programs are designed to promote community inclusion and foster social life on the spectrum as well. Walder Fiddle describes a new theater program for adults on the spectrum age 21 and older. In true DJF Foundation fashion, the program is a partnership with grassroots theater company The Garage Theatre Group, and it is also the first theater company in the country that serves people on the spectrum. The program was inspired by a 35-year-old DJF Foundation self–advocate who wanted to participate in theater. Likewise, Walder Fiddle mentions a partnership with a New York-based organization with whom the DJF Foundation will be funding a dating and social interaction peer support program at the Manhattan YMCA. The focus of the program will be to enhance social and dating skills among adults on the spectrum.
Laughing, Walder Fiddle sums up the DJF Foundation's programmatic approach in this way: “I'm always asking [other organizations], 'Would you?'” Thanks to this persistent focus on partnership, the DJF Foundation has emerged as a leader in the field of autism awareness and support.
Awards and Accolades
The DJF Foundation has received many awards for services, but perhaps the best testament to its work is its longevity; it has survived and thrived in a time when other nonprofits and support centers have closed their doors or diminished in size due to lack of funds. Walder Fiddle herself has been the recipient of multiple New Jersey area service awards. She has been profiled in a Redbook feature on leadership, and quoted in Parade as well. Though Walder Fiddle expresses gratitude for the opportunity to reach a wider audience with the message of the DJF Foundation, she notes that her how important the formation of close relationships with individuals on the spectrum is to her. “The best honor that I can get is from our self-advocates ... having that relationship, that is the highest honor and praise. If they tell me, 'Linda, this is a great program', or 'Linda, I feel like I'm getting somewhere in life' ... That's the blue ribbon stamp of approval for me.”
Significant Gaps in Services
Though autism awareness and advocacy efforts have increased nationwide since the DJF Foundation opened in 2002, there is still a significant gap between the level of need and the practical resources and supports available for adults on the spectrum and their families. Likewise, there is a gap between what the DJF Foundation hopes to accomplish and what they experience as the current reality of life on the spectrum for many adults. Specifically, the issue of finding caring, qualified, long-term support staff is a pressing one for many in the autism community and for the volunteer-supported DJF Foundation as well.
As Walder Fiddle observes, “As more and more adults are in the community, they're only going to be successful if they have the right supports and staff. We need to address this—[by] creating tracks in high schools and universities, where working with adults on the spectrum is a highly-valued position. We need to pay support staff a higher wage. There are many caring people in the field, but they work long hours for little pay. We can create great programs, but if we don't have great people to run them, they cannot succeed.”
Looking Back and Looking Ahead
The Foundation will celebrate its 10-year anniversary in 2012. Walder Fiddle takes time to reflect on all that the organization has done, and where it is going for the future. The Foundation itself is now the same age as Daniel was when he passed away. Looking forward to the future of the autism community, she says, “The collaborative spirit needs to be fostered and further developed. We can achieve so much more together. The goal has to be foremost: How can we help the people we serve?” In that spirit, Walder Fiddle reminds service providers to constantly look to individuals with autism for inspiration and direction. To this end, the DJF Foundation has partnered with the Autistic Self Advocacy Network (ASAN) to create an "Empowering Autistic Leaders" manual. The purpose of this document, which will feature a great deal of input from self-advocates, is to support adults on the spectrum who are attending college. This resource guide is geared toward helping adults on the spectrum to form support groups and connect with other ASD students, in order to form strong relationships and self-advocate on campus. “I love that we're doing [this project] with people who are on the spectrum,” says Walder Fiddle. They're the ones that know about it, always ... We always have to honor and celebrate the voices of the people on the spectrum. We need to be continuously respectful of people, and look at each person individually. Everybody has a gift, we need to help them find it, and then foster and develop it, in the community at large.”
For her part, Walder Fiddle continues to be motivated by the individuals she serves. She asks, “How do we open doors so that people on the spectrum can have full and productive adult lives? It's a civil rights issue … It's a matter of humanity, and it's a matter for humanity. We have to open our minds and our hearts … And then open some doors, and let people [on the spectrum] walk through them. People are capable.” And with that affirmation as their central belief, the DJF Foundation moves into a second decade of service.