More parents are having their children screened for autism than ever before. In Georgia, it can take up to a year to get a diagnosis. For some parents, that wait can be unnerving.
15-year old Jaqavius Gordon plays a conversation game with his speech therapist at the Navicent Autism Center in Macon. He visits the Center four days per week for speech therapy and occupational therapy. The topic of the day, picked by Jaqavius himself, is dessert. He and his therapist tossed the the ball back and forth as they asked each other simple questions.
“My favorite dessert is vanilla ice cream, chocolate,” and then, after a short pause, added “and cookies.”
He tossed the ball to his therapist so she could answer the question next.
“Oh, no! Jaqavius interrupted. “Milkshakes, sorry.”
His mother, Tracy Gordon, became worried when Jaqavius was two and still couldn’t speak.
“He was pointing, he was making noise and we could never get him to say anything. I couldn’t leave him out the house or anything without him,” said Gordon of the wait.
The wait time for getting an Autism Spectrum Disorder (ASD) diagnosis in Georgia is often upwards of six months, and sometimes as long as 14 months for young kids and teenagers.
Director of the Autism Center at Emory University Catherine Rice said there is a shortage of child psychologists. Making the problem worse: a lack of confidence in the diagnosis process, especially with younger kids whose possible signs of ASD can be similar to normal deviations in infant behavior.
“People can provide that diagnosis, but typically need additional training to feel that that is an appropriate area for them to be practicing in,” Rice said.
That lack of confidence comes from not having much hands-on experience in recognizing ASD in kids. Child specialists are schooled on the written criteria of autism, but ASD is nuanced and requires a detailed behavioral assessment.
Some psychologists choose to take extra training in order to feel more confident working with kids with ASD, but training is expensive and time-consuming. For one professional, it can cost several thousand dollars and take up to a week to complete.
“Honestly, sometimes it doesn’t make economic sense,” Rice said, especially for doctors in rural areas.
Tracy Gordon had to wait six months to get a diagnosis for her son. During that time, she said worried constantly.
“I was scared. I didn’t know what to do,” Gordon said. “When you don’t know what your child want, or they can’t tell you what they want, it was very hard.”
The Georgia Department of Public Health started funding a training program in 2015 specifically for ASD. It focused on doing hands-on case studies in child behavior. So far they have trained 54 child psychologists.
Dr. Avital Cohen was one of those doctors.
“It was more hands on. Instead of watching, we actually got to do it with other people watching us and providing feedback on and how we were doing with it,” Cohen said.
State law requires most health insurance to cover ASD therapies for children up to age six (next year, the requirement extends to age 20). Medicaid is now required to provide ASD coverage to young people up to age 21.
This increased coverage stems from a greater awareness of ASD, and a broadened definition of what behaviors fall in the autism spectrum.
Doctor Elizabeth Young of the Navicent Autism Center in Macon said more families than ever have lined up to get a formal diagnosis.
“There was kind of a major outcry from parents in the community looking for services here, particularly in Autism,” Dr. Young said.
Seven year-old Aiden West of Macon got out of therapy at the Navicent Center and rushed to tell his mom, Catina West, about his day.
Aiden was born prematurely, so Dr. Young knew he was at a higher risk for autism. He was diagnosed at eight months.
“I wasn’t afraid. Now that I know I have to step up my game, whether he was gonna be paralyzed, brain damaged, whatever it was I was all for it. I was all for it,” Catina said.
Catina affectionately calls Aiden her “miracle baby.”