- A large health system–used tool to screen almost all children for autism spectrum disorder (ASD) only identifies less than half with the condition.
- Just 39 percent of children who went on to get a diagnosis of ASD screened positive on their earlier pediatrician visit.
- The study authors looked at electronic health records of almost 26,000 children who had a well-child visit at a pediatric clinic in Pennsylvania and New Jersey.
In a new study, researchers found that many pediatricians using the standard autism screening tool missed signs of ASD during children’s routine well-child visits.
The study researchers from Children’s Hospital of Philadelphia (CHOP) found that only about 39 percent of children, who went on to get a diagnosis of ASD, had screened positive at their well-child visit.
Currently, the American Academy of Pediatrics’ goal is universal ASD screening for children ages 18 and 24 months.
But the study findings mean the screening tool missed many children with a higher chance for ASD, delaying their chance to get early treatment.
In the new study, researchers from CHOP looked at the electronic health records of almost 26,000 children who had a well-child visit at a pediatric clinic in Pennsylvania and New Jersey.
Their results were published Sept. 27 in the journal Pediatrics.
Healthcare providers screened children using a tool called the Modified Checklist for Autism in Toddlers with Follow-Up (M-CHAT/F). The tool was integrated into the health system’s electronic health record system, which the authors say helped achieve almost universal screening.
Almost 91 percent of the children in the study were screened, with just more than half being screened more than once.
“The importance of early intervention for toddlers with ASD is undeniable. Universal screening helps us make decisions about which children are at risk,” said Wendy Stone, PhD, director of the University of Washington’s Research in Early Autism Detection and Intervention Lab, who wasn’t involved in the study.
However, only 47.8 percent of children were screened at the recommended ages of 18 and 24 months. This was largely due to children not attending both well-child visits, the authors wrote.
In spite of making the screening part of electronic health records, screening rates were lower among minority, urban, and lower-income children.
“Even when you try to make it equal, there are still disparities in how families are treated by healthcare providers,” said Diana Robins, PhD, interim director and professor at the A.J. Drexel Autism Institute in Philadelphia, who wasn’t involved in the study.
She says several barriers could be behind this trend, including assumptions made by health professionals about certain patients.
This kind of bias would need to be “addressed through education, or maybe just pointing out to providers that they’re treating some of their patients differently,” Robins said.
Robins is the lead developer of the M-CHAT/F tool. Although some for-profit companies pay to use this tool, medical systems like CHOP are able to use it for free.
Physicians use the screening tool to identify children with a high chance for ASD, a developmental disorder that begins early in childhood.
These children are then referred to a specialist for diagnosis. Physicians may also refer children based on their own observations of the child.
Although the screening tool identified only 38.8 percent of children with ASD, these children were diagnosed 7 months earlier than those who screened negative.
“If close to 40 percent of children can be detected younger, and those children can get diagnosed and into an appropriate intervention earlier, that’s a win,” Robins said.
But what about children who screened negative at 18 or 24 months, but were later diagnosed with ASD?
Stone says screening for ASD is different than screening for a medical condition like heart disease or diabetes, which have distinct biological markers that physicians can measure.
“The early symptoms of ASD can be subtle and insidious, as well as manifested differently — and on a different timeline — from child to child,” Stone said.
ASD may not be detectable in some children until age 3, or even in kindergarten or first grade.
Early symptoms also tend to be behaviors that we see “less of” in autistic children, such as social responsiveness or eye contact. These can be “more difficult to detect, especially during a short office visit,” Stone said.
Children also vary in how their symptoms show up.
“Some children have more strengths, which means that when the social and communication demands are relatively low, they can compensate for having some challenges or weaknesses,” Robins said.
But as children get older and they face more challenging situations, they may not be able to “mask or compensate” for their symptoms, she adds, which is when their ASD becomes detectable.
The authors of an accompanying editorial pointed out that although the screening tool didn’t identify every child with ASD, the quality of monitoring done by physicians without the tool varies depending on their experience.
Other factors can also skew physician monitoring, such as the child’s race and ethnicity as well as family income and educational background. Screening tools are meant to reduce some of this.
Experts point out that the standard screening is just one factor in how a child is monitored for ASD.
“ASD screening should be considered as part of a process that considers behavioral observations and concerns of parents and primary care providers, and employs shared decision-making regarding next steps,” Stone explained.
Robins emphasizes that ongoing monitoring should be done along with standardized screenings — with parents playing an important role.
“Parents should be proactive and recognize that they are the expert on their child,” Robins said. “When they see something that’s concerning, they should bring it to the attention of a professional.”
And if a child’s physician doesn’t listen and a parent is still concerned, the parent “should go ahead and seek a specialist who can help determine if the child really does have a diagnosis or need some early intervention,” Robins said.
Robins says every parent has a right to ask for a free evaluation for their child through the Program for Infants and Toddlers with Disabilities (Part C of the Individuals with Disabilities Education Act, or IDEA).
More details about state programs can be found online.
These websites also offer resources for parents on the early signs of autism, as well as early childhood milestones: