A Mother’s Letter

The Daniel Jordan Fiddle Foundation was inspired by my son Danny Fiddle and the world his lifetime exposed me to. At the time of its inception, The Daniel Jordan Fiddle Foundation trustees determined that the Foundation’s mission would focus on developing and funding programs that open doors in the community to enhance the lives of young adults transitioning to adult life and adults diagnosed with Autism Spectrum Disorder (ASD). To my knowledge, no other organization in the United States in 2002 was focusing on adult autism. This mission derived from motherly concerns about Danny’s future and my desire to always provide him with the fullest array of opportunities throughout his lifetime. When Danny passed away at age nine, his father Fred and I, along with what is still our original Board of Trustees decided to create the first autism organization, completely volunteer-run, that would focus on adults.

The motherly concerns I had for Danny as he aged from an adorable little boy to adulthood, were not unique to me at all. Thousands of parents wrestle with the same concerns on a daily basis and stay up many sleepless nights wondering how their adult son or daughter will be able to live and function in the community, or if they will be able to at all, and even more troubling, who is going to take care of their child when they no longer can? As plaguing as these questions are to a parents and family members who love an individual diagnosed with ASD, I have also come to realize that these questions and concerns should be uprooting and unsettling to the community at large. We as a world community, as parents of healthy, typically developing children, should be concerned about the consequences of not providing residential, vocational, recreational and educational opportunities for adults diagnosed with ASD. The more opportunities these adults have to live and work in the community and to be as self-sufficient as possible, the better it will be not only for them and their families, but for society as a whole.

Today, as in 2002, when we developed our first programs and awarded our first grants, The Daniel Jordan Fiddle Foundation is fully and exclusively committed to adults diagnosed with ASD. Since our inception, we have steadily grown and expanded our reach by developing new and innovative, replicable programs, public policy and much-needed resources that benefit the diverse adult population. In 20l4, to assure that adult autism is focused on for generations to come, The Daniel Jordan Fiddle Foundation launched endowed funds named for our organization at America’s leading universities including Yale University, the University of Miami, Brown University and Rutgers University. Each of The Daniel Jordan Fiddle Foundation Endowed Funds is focused on a different aspect of adult autism, including research, lifelong family support and model programs. We are proudly a leading advocate on the state and national levels for issues that affect all adults including health care, housing and jobs. We are always cognizant that what matters most is the quality of life for each person and that each person must be respected and honored for who they are, and we do so in our organization every day because we listen to our self-advocate advisors and their peers. Respect from his community is what I would always wanted for Danny and this is what our Board of Trustees and I want for all autistic adults. 

Several years ago, I was at an autism conference and during the luncheon I was seated next to a parent of a teenager with ASD. After we had spoken for a while, she asked me why I do what I do since I no longer had to face the challenges she had before her? Honestly, until she asked me that question, it had never occurred to me that I would not choose to do what I am doing. When I thought about it later, I realized that Danny is and will always be with me, inspiring me to encourage and create opportunities for all individuals diagnosed with ASD to live the fullest lives possible.

I am so very proud and grateful to each person I have met on this journey for their partnership, support, time and commitment, and to our incredibly smart and dedicated Board of Trustees who have forever changed for the better the lives of adults with ASD. Our communities and our world must continue to open doors for all people who live with the challenges of ASD. It is up to each of us to continue the legacy of the goals and dreams I had for my son Danny, and never forget that as Saint Teresa said, “ every drop of rain matters to the ocean.”

Always with love,