Snai’s first year was “very typical,” according to his mother, Mony. His fine and gross motor skills were even above average. But when he was about 18 months old, Mony and her husband, Daniel, noticed he preferred certain sensory stimuli and showed an intense interest in wheels. He stopped responding to his name, wasn’t making eye contact and began keeping to himself.
These new behaviors started just as the COVID-19 pandemic arrived, putting non-emergency medical visits on hold. Mony dove into conducting her own research to understand the possibilities. “I felt like I was in college all over again,” she says. “I wanted to know what I could do now so that I could support my son the best way.” Suspecting autism, she and Daniel felt overwhelmed and confused.
They managed to get Snai seen at an independent clinic, and then came to the Center for Autism Research at Children’s Hospital of Philadelphia (CHOP), where the autism diagnosis was verified. Snai began receiving support through applied behavior analysis therapy and physical and occupational therapy.
Now 3 and the second of four children, Snai’s autism has positively impacted the family’s interactions. “We have become much more emotionally intelligent,” says Mony. “We have become much more intentional in our actions and words, from praising, recognizing and celebrating small wins, to an emphasis on every actionable gesture and emotion.” They began focusing on what they call “the five Cs”: communication, comprehension, consistency, commitment and compromise. The result? “Oh my, has Snai thrived since then!” He attends a neurotypical preschool one day a week and participates in an early childhood development program three days a week.
Because Snai is on the spectrum, Mony and Daniel’s next child, 21-month-old Sage, was enrolled in a research study at CHOP called the Infant Brain Imaging Study starting when he was just a few months old. “When I learned that there was a study that could potentially help identify symptoms earlier to help parents plan and be prepared to provide the best care possible for their children, and knowing I was in a position to help the cause and potentially help change the narrative, I joined the cause,” Mony explains. For the study, the younger siblings of autistic children are monitored through their first 24 months of life using behavioral tests and MRIs that evaluate the physical structure of their brains. The study has revealed physical differences between the brains of autistic children and the brains of neurotypical children.
“CHOP will always be our choice is because of the patient care and trust,” says Mony. “Because of the genuineness, transparency and our overall experience, CHOP for us is a second family when it comes to our children’s medical needs.”