New study says more kids who meet autism criteria fail to get a formal diagnosis

(KCRG File)
Published: Feb. 5, 2020 at 4:57 PM CST
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A new Journal of Autism Research study said more and more children who meet the criteria for autism are failing to receive a formal diagnosis, with around a quarter of kids falling through the cracks.

"For children with autism, oftentimes as young as 8 months we are seeing some of those unique differences, those challenges," Dr. Dinah Conti, a pediatrician with UnityPoint Health, said.

However, Conti said not everyone with autism develops signs that early. That's one of the ways children who actually fall into the criteria for autism fail to get a formal diagnosis.

"For those children showing symptoms from 18 to 24 months, which is majority of children with autism spectrum disorder, those children were more likely to be picked up early if they showed symptoms early," Conti said.

That's also one of the findings in the study. They analyzed about 260,000 children in 11 states who were 8 years old in 2014 to determine if they qualified for an autism diagnosis. They not only found that a quarter of these kids had no official diagnosis, but that a majority of the children undiagnosed were most likely to be black or Hispanic.

"What we know across the board in medicine is that African Americans and Hispanics have been left behind. We know that with maternal health, and delivery," Conti said. "Our Hispanic and people of color, they routinely will tell researchers that they didn't feel their doctor listened."

Conti also said stigma, autism being confused as a behavioral issue rather than developmental, and long wait times at autism centers are factors for a late or non-diagnosis.

Todd Kopelman, co-director of the University of Iowa's Autism Center, said it's currently an up to four months wait there.

"But compared to nationwide rates, we’re talking 6 to 8 months or even longer," Kopelman said. "On the child’s end, that means they are delayed in getting the help they need because for some services you need a diagnosis to receive that type of support."

Kopelman said in the meantime, there are alternatives for help.

“We have child health specialty clinics scattered across the whole state that can connect parents with services in school or private services in the community, a lot of which are available without a diagnosis," Kopeman said.

He encourages parents to pursue that when they first notice concerns, but ultimately better screening tools and more awareness and education are needed too.