As many as 1 in 5 children with autism in New Jersey are undiagnosed, according to new research from the autism-monitoring network of the Centers for Disease Control and Prevention. Worse, New Jersey is not the only state to suffer from this problem. The CDC found that the rate of missed, delayed, or inaccurate diagnoses affected nearly half of Minnesota eight year olds with autism, and one in eight children in Missouri. New Jersey has the highest autism rate in the nation, according to the nonprofit Autism New Jersey, with 1 in 34 children diagnosed.
The diagnostic delay can be highly detrimental for children on the spectrum, preventing them from receiving vital therapy and intervention. Lisa Wiggins, the author of the CDC research, explained that having a diagnosis “might prompt delivery of services that really maximize the developmental potential of the child.”
The research conducted by Wiggins, CDC scientists, and Rutgers associate professor of pediatrics Walter Zahorodny was published in December in the journal Autism Research, according to a report this month by North Jersey.com. Wiggins said she and her colleagues were surprised by the number of autistic children who had not received a diagnosis.
The research also found that non-white children might go undiagnosed because health care providers spend less time evaluating parents concerns, spend less time evaluating the child, or apply mental health labels to behavior that is actually connected to autism, which is a developmental disorder. The lack of diagnoses might also be connected to the fact that autism is stigmatized in some communities, with parents refusing to accept their child’s diagnosis. Some parents might also be confused by the diagnostic process, since there is no simple test to diagnose autism.
Zahorodny says that more than half of children undiagnosed with autism need “substantial or very substantial support in daily life.” By contrast, 30% of children who are diagnosed lose their diagnosis and can be mainstreamed in school, according to psychologist and Autism New Jersey executive director Suzanne Buchanan.
To identify the children with autism, the researchers review the records of every child in special education, and every child with a clinical record of developmental, behavioral, or neurological care, to see if the number of symptoms matches the definition of autism. This approach is known as “case-finding,” and has been used for the eight studies conducted since 2000. As noted in North Jersey.com’s report, Zahorodny is concerned that researchers might not be using the “case-finding” method, leading to undercounting as a result.
“We would underestimate the scope of autism spectrum disorder” if researchers didn’t dig for cases, Zahorodony said. “A 20 to 25 percent difference in the total number of cases makes a difference in grasping the scope of autism.”