When my daughter was diagnosed at age two, I so wished there was a test that could tell us more than the fact that she met criteria for autism spectrum disorder. “Is autism in our family tree?” I wondered, thinking back to a quirky great aunt or two. “Did I do or not do something to cause this?” and “What specific treatments offer her the best chances for an optimal outcome?” were the other two questions that for years haunted me.
There were not many research studies back then and science seemed glacially slow to me considering I had worked with adults with autism in the early 80’s and had thought that we’d have figured this out by the time I had kids. Fast-forward to today when parents have the opportunity to participate in many studies aimed at answering these same questions.
With an already crazy-busy life, why would parents even consider adding one more thing to the mix? I can think of five good reasons!
1. Knowledge is empowering.
We’re learning that this disorder we call autism is quite genetically complex, accounting for the broad spectrum of presentation in individuals. The unknown is often what scares us the most. Realizing that there are dedicated people trying to find answers is reassuring and learning more about their work can help build confidence.
2. Science gives us hope.
With adversity, it always helps to have hope that things can and will get better. The way I see it, the only way this will happen is if we find answers to the many questions an autism diagnosis brings.
3. Research informs clinical care.
What scientists learn in the lab can directly translate to improved clinical care in our child’s clinic visits. For example, behaviorally based therapy for autism, now the only empirically supported treatment, at one point was only a research idea. More recently, with advances in understanding the genetics of autism, for families with identified genetic events there are now specific treatment guidelines with information on what symptoms to monitor as well as opportunities to meet and engage with other families with the same genetic event.
4. Research leads to more tailored treatment.
Recent genetic studies are yielding promising clues to better understanding autism which means more specific treatment can be tailored to an individual’s unique genetic profile. This focused approach means parents save time, money, and effort.
5. We’re all in this together.
Whether your child is 4 or 40, we all have the same fervent desire to improve their and our quality of life. Science depends upon numbers to show patterns, differences, and provide statistically significant results. Each of us adds to this effort for the greater good.
With these five reasons in mind, I recently registered our family to participate in the SPARK study, a national study that is building a community of 50,000 individuals with autism and their families. This study collects family information and also saliva samples for genetic analysis. Seattle Children’s Autism Center is helping to launch this study, and families can enroll now. Why did I decide to do this study? First, it met all the reasons above and it also is an easy study to do for my family, my daughter in particular. Easy is the operative word here! Registration for SPARK is done entirely online and saliva collection kits are mailed to families’ homes. If you’re interested in learning more, you can contact the study coordinators: Emily Fox and Kira Hamer by phone at 206-987-7917 or by email at SCACStudies@seattlechildrens.org.