When my son, Cason, was diagnosed with autism spectrum disorder (ASD) on his third birthday, we knew it was coming. Our family had sought out therapies and support and got on the lengthy assessment waiting lists as soon as we began to notice symptoms, delays and regression in his language and socialization. Getting his ASD diagnosis set us forth on a trajectory of questions and actions. What do we do next? What therapies and programs do we seek out and invest in? What professionals do we trust for advice? What is right for our family?
After getting a grasp on our next steps, a huge piece of our family’s story involved what we could do to help other families cope, adjust to a child’s diagnosis of ASD and how to support others in their journeys as so many families had helped us so far in ours. One huge opportunity to contribute and help other families involves our participation in research. There is still so much to be learned about ASD – where it comes from, what treatments to choose, how to cope as a family and how to move forward.
Participating in SPARK (Simons Foundation Powering Autism Research for Knowledge) is an opportunity to contribute to research, begin the process of answering those lingering questions and to help other families in the future. SPARK is a unique research project because families get feedback if anything comes up in the genetic results. It offers a community of other families who are traveling the same journey. It was easy to participate as we only had to sign up online then complete the saliva kit when it came in the mail. It was convenient because everything could be done from home and on our time.
SPARK also encouraged our whole family to be involved and let everyone be a participant. We elected to participate in SPARK because it means we are contributing to something bigger – our journey as a family with an AUsome kiddo will continue, and I hope we can continue learning from other families, helping other families and sharing this journey together.
This post originally appeared on the Texas Children’s Hospital Blog. Texas Children’s and Baylor College of Medicine are two of more than 20 clinical site research partners of SPARK for Autism. If you choose to join SPARK via Texas Children’s Hospital, you are agreeing to a research study.