This guest Q&A is with Pamela Feliciano, Ph.D. Pam is the Scientific Director of SPARK, a research initiative that is recruiting 50,000 individuals with ASD plus their family members. SPARK seeks to accelerate clinical research in autism by creating a partnership with individuals and families with ASD. She is also the mother of a wonderful 12-year-old boy with autism.
Hi Pam! When did you first become interested in Autism Spectrum Disorders (ASD)?
My son was diagnosed in 2007. It changed everything. At the time, I was a postdoctoral fellow at Memorial-Sloan Kettering, working in cell biology. I spent another year and half in the fellowship and then went on to take a position as an Editor at the scientific journal, Nature Genetics. I was happy to take on a role at the journal, because many/most of their manuscripts are focused on the genetics of human traits and diseases. I was a geneticist, but I had never worked in human genetics. That experience fueled my desire to be more actively engaged in autism research, which is why I was thrilled to join SFARI in 2014.
We love when SPARK was launched! How did that idea come about?
Previous research showed how successful genome sequencing of families was in discovering new autism genes. We felt that they could help connect families and researchers in a more direct way. Researchers then wouldn’t have to work so hard at recruiting participants for their studies. Families could benefit by knowing how to participate in research and by getting information back from SPARK and other researchers. ASD has a lot of different causes and a lot of different symptoms. We thought we could really make an impact on autism research by creating a large cohort of individuals where scientists could access behavioral and genetic data. We all want more answers to our questions about how we can better help people with autism. We think that SPARK will benefit us all.
What advice would you give to a parent of a newly diagnosed child with autism based on your experiences with your child?
There is no roadmap that works for everyone with autism. I think it’s a good idea for parents to connect with other families in their local communities to get recommendations for schools and therapists. It might be challenging to find therapists that connect with you and your child, but keep going and don’t be afraid to change therapists. One of the best pieces of advice that someone gave me early on was not to shelter my child from the world. They told me to teach my son to adapt to the world, rather than avoid taking him into the world—whether it be to dinner or the grocery store or a week’s vacation. We’ve gone through rough patches over the years. He had a phase where he was constantly eloping. But, we got through it.
What is a misconception you see out there today in relationship to autism & science that you would like to see debunked?
I hope that more people will understand the value of doing genetic research in autism. I think a common misunderstanding is that that there isn’t much value in knowing what genes can lead to autism. People think that that information isn’t useful because it can’t be acted upon, or that it could only be used for negative purposes. While it is true that genetic diagnoses in ASD are typically not actionable today, it takes time for genetic research to be translated into better treatments. By working together, we will get to the answers and better treatments much faster.
How could our readers learn more about you and the amazing work you are doing out there in the community?
To learn more about SPARK, sign up for our newsletter, watch our Webinars or follow us on Facebook! If you’d like to join SPARK, you can do so from the comfort of your own living room at SPARKforAutism.org.
What’s next for you and your team? Anything fun coming up?
SPARK is constantly growing and evolving. Researchers can now apply to recruit SPARK participants for their own work. We hope the SPARK community is primed to participate in these other research studies! We also will be sharing interesting summaries of the data that we have collected so far. So stay tuned for that information!
Any final message you’d like to share?
I feel incredibly lucky to combine my scientific expertise with my passion for helping individuals with autism. I do think that SPARK will make a difference in autism research and I hope that everyone who joins will have a positive experience.
