When Arlo was 18-months-old, his parents, John and Jenna, noticed subtle sensory issues and a lack of speech development.
They asked their pediatrician if the characteristics and behaviors Arlo was exhibiting could be possible signs of autism. The pediatrician reassured them that nothing was amiss and said, “Boys develop later.”
By 2, Arlo still was not speaking.
A friend told Jenna that SARRC was conducting an early intervention study with pediatricians in the Valley, which included a pediatrician that had been recommended to them.
“I immediately contacted them. At the appointment, I filled out a screening questionnaire; maybe 12 or so questions about Arlo’s development. He indicated every single red flag for autism,” Jenna says. As part of the study procedures, the new pediatrician referred Arlo to SARRC, and he was evaluated for autism spectrum disorder (ASD).
The screening, which ultimately led Jenna and John to SARRC, was part of a five-year study funded by the National Institute of Mental Health (NIMH) to lower the age of autism diagnosis.
Launched in 2014, the study is led by Christopher J. Smith, Ph.D., vice president and research director at SARRC.
“Over the course of five years, SARRC’s research team recruited and assembled a robust network of more than 100 pediatricians across 13 practices and trained them to use a structured screening questionnaire at the 12-, 18- and 24-month well-baby visits,” Smith says. “If the screening indicated delays, the child was referred to SARRC for an evaluation to identify ASD.”
Since the study’s inception, the network of pediatricians have conducted more than 50,000 screenings and identified delays for approximately 10 percent of children.
The study results indicated 90 percent of children referred for further evaluation were identified with ASD or another developmental delay and the average age of diagnosis was lowered to 22 months — a significant drop from the original average of 55 months reported by the Centers for Disease Control and Prevention.
“As with any screening, there are false-positives, or delays identified in typically developing children, and not all parents chose to pursue the evaluation,” Smith says.
Still, he reports that nearly 700 children have been evaluated at least once. Additionally, because the study included annual follow-up evaluations until the child turned 3 years old, approximately 400 of those patients were evaluated at least twice, which only confirmed the early diagnosis of ASD.
While the study ends in June 2019, early screenings and diagnoses will continue with the expansion of the current pediatrician network with generous funding from Arizona Complete Health.
“Ultimately, the goal is to have all children screened for ASD earlier, lowering the American Academy of Pediatricians’ recommended age of screening from 18 and 24 months to 12 months, and to have children with ASD identified and in therapy before the age of 3 in order to promote optimal outcomes,” Smith says.
These new, dynamic collaborations will seamlessly move children from screening, to diagnosis, to treatment, all within a matter of a few months. A process that can currently take up to 3 years.
Today, Arlo is 5 and is thriving, his mom shares.
“Instead of spinning in circles, toe walking, only eating crackers and not making eye contact, he’s spelling, writing, playing with friends, eating scrambled eggs and talking up a storm,” Jenna proudly reports.
His parents are thankful they received a diagnosis and intervention, and wonder where their little boy would be today without it.
“If we had never switched pediatricians to change to an office that screened for autism, I probably would not have received an early diagnosis for my son,” Jenna says. “And if he was screened earlier, when I was at my previous pediatrician’s office, Arlo might have started early intervention at 18 months rather than 26 months.”
Every night Arlo is able to look his parents in the eye and say, “I love you Momma and Daddy. I need to give you one more kiss,” Jenna says. “[They are] truly words we never thought we would hear. There’s no way this little boy would be doing any of this today, if it weren’t for [this study], which opened the doors for us to finally ‘meet’ our little boy. We are forever grateful.
Stay tuned to learn more about how early screening will be expanded among Arizona Complete Health pediatric providers in an effort to continue to lower the age of diagnosis in Arizona.