When my son Danny was 9 years old, he had a seizure in the middle of the night and died.
At 18 months old, Danny was diagnosed with “pervasive development disorder.” Today, we call that “autism.” This was over 25 years ago, and the condition was diagnosed differently. Danny was an adorable little boy, but he was very challenging.
We had a healthy little girl, two and half years after Danny was born. It was a balancing act making sure our daughter had enough attention because Danny took so much looking after. We were up almost every night because Danny didn’t sleep.
After Danny died, life became like a movie clip—I knew everything was continuing, but I felt like all I could do was watch. I would get up in the morning, take my daughter to school and put on an act like everything was OK. Then, I would come home and lie on the couch and cry until 3:30 p.m., when it was time to pick up my daughter at school.
Over a period of two years, when I was grieving, I decided to establish a foundation, the Daniel Jordan Fiddle Foundation for Adult Autism (DJF Foundation). The people who attended Danny’s funeral and signed the condolence book became our first donors.
I realized that nobody at that time was focusing on adults with autism. I thought that the foundation should do that.
I read an article about an organization that worked with people who have bipolar disorder and schizophrenia. There was a real synergy with autism there. I contacted the head of the umbrella organization, and the DJF Foundation gave its first grant to them. We also established a hotline so that parents could easily ask questions and get answers from experts. To this day, the hotline provides a service to the community, and the model has been duplicated in other communities.
The DJF Foundation has endowed in perpetuity an adult autism research fund at Yale Medical School, where research will focus on how to improve the well-being and health of adults diagnosed with autism. In addition, we have funded other programs.
A while back, I was at a conference on autism. At a lunch, I sat next to a parent whose teenager had autism. She asked me why I was still involved. I realized that I had never thought that this would not be my life’s work. I consider it a privilege
This is an excerpt from a comprehensive interview.