Toms River's Autism Rate In Children Highest In NJ: Rutgers Study

TOMS RIVER, NJ — Toms River has the highest percentage of children with autism spectrum disorder in New Jersey, 7.3 percent, more than triple the national average, a Rutgers study says.

Researchers analyzed data from the Autism and Developmental Disabilities Monitoring Network — a group of programs funded by Centers for Disease Control to estimate the number of children with autism — looking at 5,453 children in public school districts in Essex, Hudson, Ocean and Union counties who were 8 years old in 2016.

Through the study, released Monday, researchers discovered an estimated autism prevalence of 36 children per 1,000 in most regions, but greater than 70 per 1,000 in multiple school districts in the state. The national average of children with autism spectrum disorder is 2 percent.

In Toms River, the state’s largest suburban school district, the prevalence was 73 children per 1,000, or 7.3 percent, with 120 per thousand (12 percent) prevalence among boys. In Newark, the state's largest school district, the prevalence was about 5 percent, according to the study, which was funded through grants from the National Center on Birth Defects and Developmental Disabilities and National Institute of Environmental Health Sciences.

"We found that mid-socioeconomic status communities, like Toms River, had the highest ASD rates, which was contrary to expectation because in earlier U.S. studies ASD rates were highest in high- socioeconomic status communities," said Josephine Shenouda, a project coordinator at Rutgers New Jersey Medical School and study co-author.

The study also found that one in five school districts had ASD estimates greater than 5 percent and that Hispanic children were less likely to be identified with ASD, compared to white and Black peers, indicating a significant disparity in identification.

Walter Zahorodny, an associate professor of pediatrics at Rutgers New Jersey Medical School who co-authored the study, said the study looked at children who were evaluated for special education needs; the study is updated every two years.

Through an agreement with school districts in the region, they look at the evaluations — all personally identifying information is stripped away — and they are scored based what characteristics satisfy the definition of autism from the American Psychiatric Association, he said.

The researchers compare the prevalence rate by county as well as by school district; Ocean County's autism prevalence is 5 percent, he said.

It is not clear how much the Toms River autism rate is influenced by families moving into the district because of the district's special education programs, Zahorodny said.

"I’m not exactly certain to what extent it’s (due to) migrating district to district," he said. "I would imagine there is some of that."

It's also unclear how much of the Toms River rate is a reflection of better screening of children to ensure they receive needed services. But Zahorodny said the percentage of children with autism spectrum disorder continues to rise in a way that is more than just a reflection of better diagnostics.

"When you look at things closely enough for long enough you’ll see them plateau," he said, noting the CDC has been studying autism for more than 20 years.

"What's propelling the increase? What are the environmental triggers? There's really some unanswered questions," Zahorodny said.

Zahorodny said it will be up to the CDC to decide what direction it will go in continuing to seek the cause. In the meantime, the monitoring program that has helped to track the increases is being reduced because of cuts to the CDC budget over the last four years. The program also has been affected by the pandemic. The Rutgers group is seeking funding for its work from alternative sources, he said.

Those cuts are reflected in the next report, which was just completed. That report has scaled back the number of counties that are being monitored and does not include Ocean County, where autism has been studied going back to the early 2000s, when concerns were raised about a possible autism cluster in Brick Township.

The CDC later said the number of cases in Brick didn't amount a cluster. Those findings said Brick had 6.7 cases per thousand children, or 0.6 percent rate of occurrence.

Now, Brick has a prevalence of 35 children per 1,000 — over a five-fold increase, Zahorodny said.

"In Brick they’re very good at identifying children not only moderately and severely affected (by autism spectrum disorder) but also children who are mildly affected," he said.

The study also raises concerns about children in low-income communities, who are often under-served with special education and whose special education needs often go undetected because families don't have the access to the same level of diagnostic services.

"If you spend resources on children with learning problems, you’ll find children with learning problems," Zahorodny said. New Jersey school districts are "in a position to find most of the true cases (of autism spectrum disorder)" because of the state's investment in education.

Identifying students with autism spectrum disorder is important because it has implications moving forward, he said. Children who are being identified as being on the spectrum are children who are receiving services. But the difficulty arises because there is a lot of difference from child to child in how they experience autism, from childhood to adulthood, which affects the amount and level of services they need.

Early screening and intervention, which is recommended between 18 months and two years of age by the American Academy of Pediatrics, is critical, he said.

"The vast majority of cases can be identified at that age," Zahorodny said. "And then you're on the path to having your child get early intervention. The language growth, the social growth can only be positive."

"They all do progress," he said. "They do improve. We need to understand the scope of autism is so large we have to plan for adolescents and adults" who will need assistance.

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