How many New Jersey teenagers are living with autism and don't even know it?

The number could be quite high, according to newly published research out of Rutgers University.

Based on an analysis of hundreds of adolescents in a segment of New Jersey, the study suggests that about a quarter of 16-year-olds with autism spectrum disorder have yet to receive a formal diagnosis.

Diagnosing autism in NJ

"New Jersey is excellent in terms of identifying individuals with autism. But even when we think we are capturing autism and understanding how many are affected, we're still, in reality, underestimating the true prevalence of the disorder," said Walter Zahorodny, lead author of the study and an associate professor at Rutgers New Jersey Medical School.

The study, published in the Journal of Autism and Developmental Disorders, is believed to deliver the best look at ASD prevalence among teens in our region.

What this autism study found

Researchers evaluated more than 500 16-year-olds, from Essex, Hudson, Union, and Ocean counties. Overall, 1.77% of the cohort were found to have ASD, and many had not received a diagnosis.

Researchers additionally found that most of the 16-year-olds with autism also presented with one or more neuro-psychiatric conditions, such as attention deficit hyperactivity disorder. Autism was identified more frequently in males, compared to females, in white adolescents than their Black and Hisplanic peers, and in high-income households compared to low-income households.

The study suggests that schools and health care providers can improve their tools for detecting autism.

Better late than never when it comes to diagnosis

Zarohodny noted that individuals who make it to age 16 without a diagnosis likely have a more subtle form of the disorder — adults may be able to pick up on signs related to socialization, such as one's struggle with participation in activities or understanding friendships.

"Definitely it's better to have a late identification or a late diagnosis than to go undiagnosed," Zahorodny said. "A person aged 16 is still malleable and we can do a lot of things to help the overall functionality of that person, and also we can do much to improve their quality of life, if we understand the true nature of their problem."

According to 2023 data from the Centers for Disease Control and Prevention, New Jersey has the third highest rate of autism among children in the nation: one in 35 children. The national rate is one in 36.

Zahordony said awareness of ASD and additional research will likely result in higher reported rates over time.

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