Darnell Carr Newsum

I am the mother of two children — both diagnosed with autism spectrum disorder. My lovely daughter and her older brother, my wonderful son, are now young adults. Looking at my children, I clearly see a spectrum. Both are loving, empathetic people who are able to applaud your best day or to cry when the world has beat you up. One has graduated from college, and one will not. One can talk openly about how it feels to be autistic, while the other will simply hold tight to your arm. One can be oblivious to the motives of those around him, while the other has a sixth sense about who is a caring person. They are both strong visual learners — one can translate his visual reality to photography, while the other can reflect the colors she sees into hand-woven scarves.

When they were first diagnosed, I spent many nights up wondering why this happened to my kids, and then wondering how I was going to acquire the skills to parent two very special children. And so I have spent the past 21+ years trying to refine my skills and searching for answers to life’s shifting questions. And what I have learned over the past two decades is that information is an important element to helping me deal with my companion questions. I have gained much information from books, doctors, therapists and teachers, and most critically, other parents. Now SPARK has pledged to provide more information — information that may one day answer why, but information that will also help answer how. How will my children, who are now young adults, find their way in a world that is only just beginning to accept them for the incredible people they are? I am hopeful that the amazing people associated with SPARK will be able to bring forth information that may help my children lead more independent lives — and provide information that helps others better understand my children.

I have long believed that life is a mix of science and art and that, for me, both these dimensions have to be addressed to solve problems. The scientists associated with SPARK are dedicated to shedding light on the science behind autism and determining if there are interventions that can be made available to alleviate some of the challenging aspects of autism. The other professionals at SPARK address the “art” and have designed a supportive program to help families participate in this important research initiative. I encourage families to share their stories, to participate in the research and to do what we can to go beyond awareness and develop greater respect and understanding. When children with autism become adults with autism, we need to have assurances that there will be supportive foundations that can be built upon. We owe it to these individuals to build pathways from which they can live productive lives. SPARK will play an important role in that effort.