August 22, 2018

Amanda and Dennis Crouse began to have concerns about their daughter, Violet, when she was five months old. She wouldn’t look at them, even when they were nose to nose with her. They grew increasingly worried when she flapped her hands. By age one, Violet didn’t speak many words or engage with other children around her.

Amanda completed the M-CHAT-R/F – the most commonly used survey for autism spectrum disorder (ASD) screening – in Violet’s pediatrician’s office. Soon after, researchers at Drexel contacted her to complete a full evaluation as part of the Early Detection Project led by Dr. Diana Robins, the author of the M-CHAT and leader of the Early Detection and Intervention Research Program at the A.J. Drexel Autism Institute.

After a battery of questions, clinicians confirmed Violet’s autism diagnosis. Amanda first reaction was relief. “My husband and I had these concerns for months and no one listened to us,” she says. “For once a doctor was seeing all these concerns we saw in our daughter and agreeing with us.”

The Early Detection Project aims to examine the optimal schedule for routine ASD screening, better integrate screening with surveillance and other strategies to detect ASD, and broaden the scope of screening beyond pediatric primary care. Evidence shows that if pediatricians screen patients at 18 and 24 months and immediately refer those children who demonstrate autism risk, they can reduce the average age of diagnosis by two years compared to the national average. Early intervention services are key to improving outcomes in children diagnosed with autism.

Amanda recognizes the importance of the work being done at the A.J. Drexel Autism Institute, and says early diagnosis and intervention is life-changing. “If the team at Drexel never saw Violet and diagnosed her, I'm not confident we would have received a diagnosis this early from any other doctor. Because we did, we were able to get Violet started with Applied Behavior Analysis (ABA) and speech therapy,” Amanda says.

After confirming her daughter’s diagnosis, Amanda enrolled in the Parent Training Study at Drexel, where she learned tips and tricks that she uses on a daily basis to improve Violet’s communication skills – things like holding objects next to her eye to encourage eye contact. Besides the skills she’s learned, Amanda has developed a better understanding of the services Violet receives through ABA, and is comforted that Violet isn’t facing this alone.

Right after Violet’s diagnosis, Amanda signed up for the 5K at the first Eagles Autism Challenge to raise money for autism research at beneficiary organizations including the A.J. Drexel Autism Institute. Her reasons for signing up were many: to support her daughter and her diagnosis, to raise money and awareness so other families had the same opportunities she had, and to give back and show support for Drexel. Not a novice racer, Amanda has completed the Broad Street Run several times and the Philadelphia Rock and Roll Half. She never thought any other race would top crossing those finish lines: “Crossing the finish line carrying my daughter at the Eagles Autism Challenge did just that. It was an overwhelmingly emotional experience,” she says.

Amanda and her husband count themselves as truly thankful and fortunate to have participated in the Early Detection Project. “Autism awareness has become our life and every day is a learning opportunity for all of us.”

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