Grandparents and Autism

Grandparents and Autism: A Geneticist and Mom Reveals the Critical Role Grandparents Play

When I was growing up, my parents both worked full-time and didn’t have the time to drive me around to multiple destinations each day.  But that’s exactly the role they’ve adopted as grandparents.

They live nearby and have helped with my sons since they were born. My son, Dylan (13) has autism, and he attends several weekly therapy appointments. I work full time as a genetic researcher, so I am not always able to get Dylan to and from these appointments. My parents’ support, in this way and many others, is invaluable to our family.

AUTISMGrandparents want to connect with their grandchildren with autism, but they face obstacles. Across the autism spectrum, some children might have full language skills while others are entirely nonverbal. My parents eagerly participated in therapy and caregiver training sessions to become more in tune with Dylan’s method of communication.

Dylan had a day off from school recently and ran errands all day with my mom. He helped his grandma carry bulky grocery items from Costco, went with her to the bank and to get her car repaired. Afterward, my mom took her grandson for an ice cream cone. This daylong outing would have been impossible several years ago.

We’ve come a long way, but there is so much we don’t know about autism. I was already a working scientist when my son was diagnosed, but neither my scientific training nor our doctors could answer my many questions. I have since dedicated my career to autism science. I am now Scientific Director of SPARK, the nation’s largest genetic study of autism ever.

Grandparents can offer a unique vantage point on a child’s behaviors. One paper found that children with autism who have frequent interactions with grandparents are diagnosed as much as five months earlier – which means the family can begin therapies sooner to help the child live their fullest possible life.

Grandparents may also have the capacity to research opportunities like SPARK. SPARK’S goal is to enroll 50,000 individuals with autism and their family members to understand the genetic causes of autism and accelerate research to improve the lives of all those affected. My family is enrolled and I, of course, understand the value of participating, but many people will want more information.  Grandparents can be the ambassadors to learn about and share knowledge about SPARK with their families.

In 13 years, my parents have never declined a babysitting request. But grandparents are much more than top-tier babysitters. They’re instrumental for families like mine. I am thankful not just to my parents, but to all grandparents who have stepped in as part-time caretakers for grandkids on and off the spectrum.

To learn more about SPARK, visit www.sparkforautism.org.

ABOUT THE AUTHOR

AUTISMPamela Feliciano, Ph.D., is the scientific director at SPARK,  the largest U.S. genetic autism research initiative. Dr. Feliciano is also the parent of a child with autism.

 

 

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