I knew very little about autism until my son Evan was diagnosed at 27 months. My only experience with autism was with a child who lived in my neighborhood when I was young. He could list every breed of dog but barely engaged in conversation. While I occasionally thought of him as I grew older, my curiosity about autism ended there. However, when I became a parent of a child with autism, knowing more about ASD became very personal to me.
Being an autism parent means being super-busy. We are often stretched very thin, working to address some of the challenges of autism: finding the school or program, the right therapists and teachers, learning new parent techniques to help your child and dealing with people’s ignorance and prejudice about autism. For those reasons, I love to keep up with all great autism research out there, but sometimes I just don’t have enough time and it seems too complicated to participate.
When I learned about the SPARK study through a friend, I thought it was worth giving it a shot because, practically speaking, this research seems totally painless! Registering online is very easy. The process was very user-friendly. I was able to complete it in about an hour, and the system allowed me pause and come back later to reread some sections. (I realized that I had to prepare for Evan’s IEP meeting when I began registering with SPARK. I paused the registration process to work on paperwork for the IEP meeting. Several days later, I revisited SPARK website and ta-da! Everything that I put in was still there!)
SPARK will have very clear benefits for research, but as I understand it, this may take some time. Evan may not be a direct beneficiary, but as a mom, I feel that I have an obligation to contribute to our understanding of what causes autism and how to provide better treatments. And I think that could be my small step to help many others like Evan.