Avi Gates, an active, independent 3-year-old, does not have autism.
But for two years, she was a participant in an autism research study aimed at changing the very nature of the disease.
Her parents, Craig and Rachael Gates, heard about the study at Marcus Autism Center from a friend and became interested. They had a family friend who had a child with autism, so they knew the impact autism can have on a family. After learning details about autism and the specific study, the Gates knew that enrolling Avi was something they had to do. They committed to a two-year study, though there are studies that are short- and long-term duration available at the center.
The idea of research was also enticing to the family because throughout Avi’s involvement, she would be surrounded by world-class researchers and clinicians. "As new parents, we were excited to have a second set of eyes looking at her, telling us what to expect and what milestones she’s reaching," Rachael said. "It was great peace of mind."
"We wanted a way to contribute to research and help families that are living with autism spectrum disorders (ASD)," Rachael said.
Currently in the state of Georgia, prevalence rates are on the rise, with one in 64 children diagnosed with autism each year, making research here in Atlanta especially critical.
Clinicians and investigators at Marcus Autism Center ensure the comfort and safety of the children and families participating in research. "Basically, the researchers just did activities very similar to what we’d do with her at home," Craig said.
Three-month-old Avi began her two-year research journey with eye tracking exercises. Buckled into a car seat-type carrier in front of a large screen, Avi’s eyes were monitored by researchers to see where she was focusing her attention. Her parents could sit right next to her the entire time, holding her hand.
"If she ever started getting fussy or overwhelmed, they would stop," Rachael said. "They’re aware she’s a young child and they always made sure everyone was comfortable with what was going on."
Visits would last about an hour, most of the time, though occasionally a two to three hours session would be scheduled. Sometimes, researchers would simply play with Avi, recording reactions, movements and speech.
Children like Avi, who aren’t at high-risk for autism, act as a control for these types of studies and help researchers know what to look for in other children.
Avi’s participation added to research that is helping scientists find ways to lower the age of diagnosis for ASD. Right now, the average age of diagnosis for ASD is over 4 years old. The earlier a diagnosis can be established, the better the long-term outcome for children with autism thanks to early intervention techniques and therapy. Studies with participants like Avi are essential to scientists trying identifying these techniques.
"Our family is incredibly grateful to have been involved in research that can help other families in the future," Craig said. "Marcus Autism Center is truly helping to change the future for kids with ASD."
To learn more about our studies call 404-785-7600 or visit our research page to view a list of all open studies.
By the time Samantha Fotsch was a little more than a year old, she had nearly lost her ability to speak. Her mother, Deborah, a nurse, said things were progressively getting worse, and after endless calls and referrals, she ended up at Marcus Autism Center. “I knew this was where we needed to be,” Deborah said.
Marcus Autism Center is a subsidiary of Children’s Healthcare of Atlanta.
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