Autism rates in NJ are the highest in the US, have tripled recently

The rate of autism among children in New Jersey — now nearly 3 percent — is the highest ever documented nationwide, with nearly 5 percent of 8-year-old boys in the state on the autism spectrum in 2014, according to a report released Thursday by the federal Centers for Disease Control.

Autism diagnoses in New Jersey have tripled in 14 years and show no signs of leveling off, according to the study's lead researcher. The rate of increase accelerated in the most recent two years, climbing by 19 percent to one in 34 children.

"We don't understand the reason for it," said Walter Zahorodny, director of the New Jersey autism study and an associate professor at Rutgers New Jersey Medical School. In the 14 years since the monitoring study began, "it has never stabilized or decreased."

Living in New Jersey doesn't necessarily increase the risk that a child will be born with autism, he said, but it does increase the likelihood that a child with autism will be identified and provided with services earlier. Other states that found lower rates of autism "are likely underestimating," he said.

At a news conference to discuss the findings, Sen. Bob Menendez said the report showed "the glaring need" for more services. "You'd be hard-pressed to find someone in New Jersey who doesn't know a child, a loved one, a neighbor or classmate personally touched by autism," he said.

The Democrat, a member of a Senate committee that helps set national health policy, said Congress must work to protect funding for services through Medicaid and a 2014 law he introduced, the Autism CARES Act, to expand research, screening and supportive care for people with autism.

New Jersey's autism rate of 2.9 percent has never been seen before in population studies, Zahorodny said.

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He termed it an "urgent public health concern" which demands a huge effort to improve early detection, identify environmental risk factors and expand resources for children — and the adults they will become.

"This is a wake-up call for all of us," said Tom Baffuto, executive director of the ARC of New Jersey. “Children with autism become adults with autism, and as advocates, we must collaborate with lawmakers to ensure supports are in place to assist with the unique challenges they face throughout their lifetime."

The average age at which children are diagnosed — 4½ years old — hasn't budged in 15 years, even though early detection and intervention with proven teaching techniques can help children to maximize their potential.

Part of the explanation for New jersey's high rate — nearly twice the national average — may be the state's track record of identifying children with autism, due to a higher level of awareness among parents, health professionals and educators, experts say.

"We're proud in New Jersey to have robust diagnostic and intervention services, which may be contributing to the high incidence rates," said Dr. Shereef Elnahal, the state health commissioner. "More children are getting evaluated and referred for services than in areas where diagnostic services are scarce."

New Jersey may also have higher rates of some of the known risk factors for autism, including premature birth and low birth weight, being a twin or triplet, and advanced parental age.

Autism is a complex neurological disorder that interferes with social interaction and communication. It affects brain development early in life. Researchers say the disorder has both genetic and environmental causes — an underlying genetic defect may be affected by an environmental trigger — but the disorder is not fully understood.

People with autism can display a range, or spectrum, of behaviors from obsessive interest in certain subjects, repetitive speech patterns, and avoidance of eye contact to self-injurious behavior with little or no ability to communicate.

The New Jersey Autism Registry, begun in 2009 in the Department of Health, currently lists nearly 28,000 children.

Boys are four times more likely than girls to have autism, in New Jersey and other states.

The state has seen an increase in the number of black and Hispanic children identified with autism. While white children are more likely to receive an autism diagnosis, the most recent rate in New Jersey among black and Hispanics shows that gap closing. Experts attribute this to better detection and access to care.

The recent growth in diagnoses also may be because more children are included who are higher-functioning, with average or above-average intelligence yet significant social and communication problems, Zahorodny said.

About 43 percent of the children identified with autism In New Jersey had average or above average intelligence, 30 percent had "borderline" IQ, and 30 percent were below average.

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"This is another urgent call to action to provide funding," said Suzanne Buchanan, executive director of Autism New Jersey, an advocacy organization. A growing population requires not only more services, but more professionals trained to work with people with autism.

"We have a helpline — 1-800-4AUTISM — for parents and professionals seeking services, and we've already documented that there are not enough," she said. More trained workers are needed to "meet the behavioral, educational, residential and vocational needs" of the autism population.

Gov. Phil Murphy's budget includes $170 million for services to help children with autism before they reach school age, and increased the funds for children on Medicaid with autism.

Nationally, the autism rate for the 11 states in the study climbed slightly to 1 in 59 — a difference of 13 percent from its previous rate of 1 in 68 two years earlier.

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The CDC's Autism and Developmental Disabilities Monitoring Network includes Arizona, Arkansas, Colorado, Georgia, Maryland, Minnesota, Missouri, North Carolina, Tennessee and Wisconsin, besides New Jersey.

The states in the network report data every two years to the CDC, based on a scrupulous review of health and educational records for all of the 8-year-olds in a select area. In New Jersey, data for 33,000 8-year-olds in four counties was reviewed in 2014 and 964 were identified with autism, based on their medical and school records.

Twelve years ago, when he began the study in the same four counties — Essex, Union, Hudson and Ocean — researchers identified just 299 children with autism, Zahorodny said, yet the population is approximately the same.

"It's a gigantic increase," he said. "When does it level off?"

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