Learning about the Conditions that Affect Autism in Children
Blake and Jennifer Sando have three reasons for their commitment to autism research: Lizzie, Blake Jr., and Teddy.
Lizzie, 13, is a happy girl who enjoys going places. Blake Jr., 11, has an engaging smile and likes the outdoors. Teddy, 7, loves to read and type on his iPad. All three have autism and limited or no speech.
The Sandos joined SPARK, an autism research study to help scientists learn more about the condition that affects their children. Each family member provided a saliva sample to SPARK, which scientists use to search for genetic changes related to autism. By comparing the genes of children and unaffected parents, researchers hope to learn more about which genetic changes contribute to autism. SPARK also has a program that matches families with scientists who are researching treatments, services, and other autism-related matters. Families decide whether to take part in these studies, and participation is optional.
The Sandos began their autism journey a decade ago, when they noticed that Lizzie, their first child, was not crawling, walking, pointing, or interacting with the world the way other toddlers did. The family contacted the University of Miami – Nova Southeastern University Center for Autism and Related Disabilities (CARD), in south Florida. CARD is one of seven state-funded outreach and support centers based at universities in Florida. It’s also a SPARK clinical site that helps recruit families into the study.
The Sandos sought early intervention services for Lizzie, who has a seizure disorder. They also met with a genetic counselor, who told them their risk of having another child with autism was relatively low, Jennifer recalls. When the Sandos’ second child, Blake Jr., was born in 2010, they were vigilant, as many parents are with babies born after an older child’s diagnosis. “You’re looking really hard at the next one,” Jennifer says.
Like his big sister, Blake Jr. had delays in his early development. He was diagnosed between his first and second birthdays, as was his younger brother, Teddy, who was born in 2013. According to research, almost 19 percent of children with an older sibling with autism will receive an autism diagnosis themselves.
Although he has learned much about autism since that first diagnosis a decade ago, Blake says there is more he wants to learn. “Frankly, with autism, you never really stop learning.”
For more information about SPARK study, visit SPARKforAutism.org/CARD.