by: Aimee LaBrie
Linda's journey started with the most profound grief she had ever experience: the death of her little boy Danny.
When her son Danny was a toddler, Linda J. Walder became concerned about his development. “He didn’t seem to be progressing in the same way as other children his age. He wasn’t pointing, attaining language or making eye contact in a typical manner.” After many visits to doctors and specialists, Danny was diagnosed as having what was then called Pervasive Developmental Disorder and is now known as Autism Spectrum Disorder (ASD).
For Linda Walder, the diagnosis was at once devastating and illuminating. “It was difficult, of course. I didn’t want him to have to struggle. At the same time, it was a relief to finally understand the challenges he faced. Having at least some information allowed our family to think about what to do next.”
Unfortunately, she also soon discovered that information and programs available to families were scarce, and even more so 20 years ago when Linda began seeking the help she needed for her son.
This lack of information was especially troubling to Walder as she delved further into the needs of the autism community. She soon found that even though New Jersey has one of the highest rates of autistic children and adults, it is also very under-resourced, particularly for the families. “It seemed unfathomable to me that I couldn’t find programs that offered assistance to not only Danny but also to my family.”
In 1999, at the age of nine, Danny died from complications related to epilepsy, a common co-morbidity that occurs with those on the autism spectrum. Walder describes the grief that she felt at the loss of her son as profound and immobilizing. She describes her life with Danny as a roller coaster ride with devastating downs and exhilarating highs, and mostly I tried not to fall off as we went along, always enjoying the thrill of motherhood with my beloved boy. And then suddenly, the ride ended, and I was in shock.”
It took some time, but Walder never forgot the people she had encountered in her journey with Danny. “I had met so many other families who were struggling,” she says. “I had to get moving. I had to do it for my little boy, and all of his classmates, and for the families just like us.”
It was then that The Daniel Jordan Fiddle Foundation was created in 2002—the first not-for-profit organization in the country to focus exclusively on adult autism. Since its inception, the Foundation has developed, funded, and advocated for programs, resources and public policy related to all aspects of adult life such as job training, residential living, the arts, recreation, health and wellness, and socialization.
Understanding that change would come through research, the training of professionals, and community programs, the Foundation created endowed programs at Brown University, Yale University, the University of Miami, and, most recently, a $100,000 gift to establish The Daniel Jordan Fiddle Foundation Adult Autism Family Support Fellowship and Resource Guide Fund at Rutgers School of Social Work, a school whose mission is to prepare students to serve underrepresented populations.
Dean Cathyrn Potter sees this partnership as a much-needed resource for an under-served population. "As young adults begin to age out of high school programs, we must find ways to provide services for their continued success, and for the success of their families," she explains. “Our graduate students are very motivated to create lasting and real change where it is most needed. Creating tangible resources for autistic adults will make a significant, positive difference in the quality of lives.”
“Our aim is to ensure that for generations to come there will be an impactful focus on adult autism. Today, there are millions of autistic adults, and we need to do more to understand adult autism and to create as many paths as we can for adults to participate in and contribute to community life,” explains Walder. “This also means providing support and resources to the families helping adults with autism navigate the world and live the fullest life possible. This is a matter of human rights.”
Walder recalls that her passion for advocacy and change was always there. But it was Danny who led her to adults with autism and their families. “I get up every day and my first thought is about what we can do next, how we can move forward. Danny is and will always be with me, inspiring me to create opportunities for all individuals diagnosed with ASD to live the fullest lives possible.”
To date, she has ushered in change for thousands of families. And she is determined to do even more.
For additional information about The Daniel Jordan Fiddle Foundation and its endowed and signature programs for autistic adults, visit www.djfiddlefoundation.org.