How Common Is It?
Valerie Paradiz, PhD
Linda Walder Fiddle, founder of The Daniel Jordan Fiddle Foundation, possesses singular optimism and vision when it comes to advancing the quality of life and citizenship for adults with autism spectrum disorders. It all started in the year 2000, when her son, Danny, was only nine years old. A forward-thinking mother of a child on the spectrum, Linda found herself doing research to locate a program where Danny would one day find the right kind of support as an adult. Although he was attending excellent school programs that supported his specific needs, her look into the adult services sector revealed a paucity of options. “I was really alarmed, quite frankly,” says Linda, and what did exist for adults was “too few and far between.” A social entrepreneur at heart, this was her cue to initiate a foundation with a specific mission: to support adults with autism in all aspects of life, to expand their access to choices, and to do so in the communities where they live.
That same year, Danny passed away, but this did not prevent Linda from pressing forward with her vision. By 2002 the DJ Fiddle Foundation was established in memory and honor of her son. Today, nearly ten years later, the foundation has become a leader in how we can make capacity building work by providing the necessary tools and guidance to families, professionals, support providers, and adults with autism to be successful in their communities. This success is due in large part to the fact that Linda has been deeply involved in the foundation’s activities from the beginning. Initially, the organization offered grants to support development of individual programs touching many aspects of adult life, recreation, employment, and education. With time, however, Linda knew that in order to truly expand options, she would need to identify methods for promoting large-scale improvement, rather than isolated “pockets of excellence” that didn’t move beyond the communities they were created in. Her collaborative, hands-on process with the organizations she provided grants to led her to a logical next step: to move beyond funding programs on a traditional, one-year cycle to longer term funding, with the goal of creating what she calls “blueprints” for other communities.
The result was the launch of The Daniel Jordan Fiddle Foundation Signature Programs one year ago. These select programs, Linda says, serve as testing grounds in the development of “a kind of recipe or template” that, once they are refined and finalized, “grassroots organizations across the country may use to devise similar successful programs.” The foundation does this by partnering with service organizations that show a particular expertise, and then by cultivating a program that is replicable in other communities. Linda knows that in order to get it right the process can take more than one twelve-month funding cycle, and so she is committed to developing models, if need be, for two or three years. “That way questions get answered,” she adds, “before the blueprint is released to the community.”
This redirection in funding approach, Linda hopes, will provide the scale of change she has always aimed to achieve, ever since she first initiated the foundation. It’s a tall order to bring her efforts to this next step of capacity-building, but Linda Fiddle has what it takes to make it work: an untiring commitment to adults with autism and their concerns, a deep and natural understanding of how successful grassroots models work, and an enthusiasm for change that is irresistible and infectious to those around her. “I could talk about this for 100 years!” she jokes. “We should just go on the Charlie Rose [program on PBS] for one month” to spread the word.
Linda hopes to have the first sets of blueprints available to communities by spring of 2012. Dissemination will be multi-faceted, consisting of video clips that demonstrate a particular signature program’s best practices, as well as manualization of the project, and any tools related to implementation, all of which will be downloadable from the foundation web site. Currently, there are about seven programs in active development. “We don’t have a limit, but I’d like to get a dozen out there,” says Linda. “We want to do this in a very conscious manner by striving for quality and sustainability.” Some examples of current Signature Program projects range from the initiation of a peer support group for older adults with autism who are 50+ years in age (located at the Global Regional Asperger Syndrome Partnership in New York City), to creating a community grassroots resource guide and hotline (developed with the Jewish Association for Developmental Disabilities of New Jersey), to a health and wellness program for adults with ASD (at Chapel Haven programs for young adults in Connecticut and Arizona). Details of these and additional Signature Programs can be found in the 2011 issue of the DJ Fiddle Foundation’s magazine (visit the web site: www.djfiddlefoundation.org).
Linda’s social entrepreneurship within the autism community will be recognized this September, when she will be honored by New Jersey Monthly magazine with the Seeds of Hope Award. Given the current state of the economy and the uncertainty our disability community faces in the months and years that lie ahead, we are fortunate to have leaders like Linda Fiddle who are tireless in their concern for the happiness and well-being of adults on the spectrum, the professionals who support them, and the families who love them. For more information, visit www.djfiddlefoundation.org.
Valerie Paradiz, PhD, is the Editor-in-Chief of the ARI Adults with ASD eBulletin and serves as Director of the Autistic Global Initiative, a program of the Autism Research Institute that is staffed entirely by adults on the spectrum. She is also the director of Valerie Paradiz, LLC, a technical assistance consultancy for schools, agencies, universities, government agencies and corporations who wish to improve programs and services for individuals with autism (www.autismselfadvocacy.com).