Autism Diagnoses May Be Seriously Underreported: What to Know - Healthline
- Researchers say diagnoses of autism spectrum disorder are on the rise, but cases might still be underreported.
- Experts note that one reason for the increase could be that more medical professionals are becoming familiar with the symptoms.
- Some experts suggest that all children be screened for autism.
A new study reports that diagnoses of autism spectrum disorder (ASD) are on the rise. Conversely, the findings also suggest that cases of autism are being underreported.
Researchers analyzed data in the New York-New Jersey metropolitan area between 2000 and 2016, publishing their findings today in the journal Pediatrics.
The researchers stated that ASD diagnoses in children with intellectual disabilities doubled between 2000 and 2016, but diagnoses in kids with no intellectual disability nearly quintupled during this timeframe.
Researchers noted that the biggest increase was found in children who don't have intellectual disabilities — flying in the face of past data that suggests intellectual disabilities and autism goes hand in hand.
Josephine Shenouda, DPH, a research study manager at Rutgers New Jersey Medical School and the lead author of the study, told Healthline that the data reflects an improved understanding of autism — and underlines the importance of detecting the neurodevelopmental condition early.
The telltale signs of autism emerge early in life — but, as the data shows, many children with autism are not diagnosed and documented.
Dr. Shawna Newman, director of child and adolescent psychiatry at Lenox Hill Hospital in New York, told Healthline that symptoms of ASD present themselves throughout childhood.
"When a young child, up to maybe two years of age, is not keeping eye contact, that's one of the biggest things," she said. "Gaze is one of the first things that occurs between parents and their kids."
Aside from this lack of emotional reciprocity early in life, Newman explains, children with ASD often have a laser focus on what they're interested in.
"They can have a very restricted range of interest or behavior. If they can't do something in the same way, they might not understand it and could become extremely distressed," Newman said. "So they might like playing with a toy, but only play the same way, every single time. If they have a routine and it's upended in any way, it's really disruptive."
Communication issues can be another sign that a child is on the autism spectrum. Newman says that kids with autism may recite words as if they're following a script rather than directly communicating.
"Infants can babble and it's not necessarily language, but it is communication," she said. "Kids with autism may repeat words or phrases as if they're scripted, but it isn't really direct communication."
Shenouda said the study's data indicates that doctors are likely getting better at identifying autism in children without other conditions.
Shenouda, who's also an adjunct professor at the Rutgers School of Public Health, says children are still falling through the cracks, though.
"Our findings represent autism prevalence in a metro area where services and resources are abundant, yet we still see disparities among children from disadvantaged areas that indicate undercounting, even within a high resource region," she said.
"On the other hand, nationwide estimates reflect a composite of prevalence from urban, suburban, and rural areas, and more epidemiological investigations are needed in different regions to understand the extent and undercounting of autism," she added.
With improved efforts to understand and identify autism, the increase in cases is part of a larger trend that will continue, says Shenouda.
"More children are identified with autism today, yet that number is likely to continue to rise as we address disparities in the identification of autism without intellectual disability among historically disadvantaged groups," she said.
Experts note that there's a strong correlation between ASD diagnoses with race and socioeconomic status, so one way to address this gap would be universal autism screening for all children.
"Early screening of autism is essential to identify children early, and children from underserved communities and likely to benefit from universal autism screening," Shenouda said.
Newman agreed, saying that early intervention can make all the difference.
"Absolutely, [universal screening] could be beneficial," she said. "It's relatively easy to get screened for and we know from research that early intervention can change the trajectory of a child's life, whether it's with language issues or learning issues. Early diagnosis, early screening, assessment, and potentially diagnosis can assist the child in learning many, many skills that will be useful for them in their life."
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