Wednesday, October 9, 2013

The Infant Sibling Study: A Family's Experience

The Mays participating in IBIS

Nicole L. May

My name is Nicole L. May. Our family recently took part in the Infant Sibling Study (IBIS) at the Center for Autism Research (CAR) at The Children’s Hospital of Philadelphia (CHOP). We found out about IBIS when one of our other children was enrolled in a different study at CAR. IBIS enrolls infant siblings of children with Autism Spectrum Disorder (ASD) and observes and tests these siblings throughout the first three years of their lives. Although I was concerned about being able to make the appointments over a three year period, my husband and I decided to join the study with our youngest son Nicholas (Nicky) because we wanted to do everything we could to help with autism research. Additionally, because we have three other sons with ASD, we knew the study would help us determine for sure whether Nicky did too. Knowing whether Nicky had ASD like his other three brothers was important, so I put everything else aside and made time for the phone interviews, MRI appointments, as well as developmental testing visits at the center.

Our research experience has been amazing! So many doors have opened since we participated in IBIS! We found out at an early age that Nicky also has ASD, but that knowledge changed everything. All of the doctors and researchers involved were able to make recommendations that have helped Nicky grow socially in a very short period of time. We found a new developmental pediatrician and made educational decisions regarding Nicky’s current Individualized Education Plan (IEP) with the help of the research team.

I would encourage other families to get involved in IBIS because the connections I have made with other families and the support from the research team alone is enough reason to participate in the studies CAR provides. We have four sons on the autism spectrum, and we know more about the resources available for our family since we participated in IBIS and other research studies at CAR. We are very thankful for the experience and will continue to participate in future studies so that we can help other families!

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