Autism rates continue to soar nationwide and New Jersey remains near the top of the list, with roughly 2 percent of children -- or about 1 in 50 -- diagnosed with the disorder, according to data the federal Centers for Disease Control and Prevention released today.
Experts say the nationwide spike is due at least in part to increased awareness and detection -- probably the same reasons why New Jersey's rate continues to be higher than states that don't have as many resources to treat autism.
"The numbers are not higher here because there are more autistic children," said Walter Zahorodny, assistant professor of pediatrics at UMDNJ--New Jersey Medical School, who collected the New Jersey data. "We generally have better awareness and more sophisticated education services -- that is probably why our estimates are higher."
According to the CDC study, which is based on 2008 data, 1 in 88 children nationwide is believed to have autism or a related disorder. In New Jersey, the rate was 1 in 49, second-highest in the nation behind Utah, where the rate was 1 in 47.
Six years ago, the nationwide autism rate was 1 in 110; in New Jersey, it was 1 in 94.
The study also found autism disorders were almost five times more common in boys, while a growing number of black and Hispanic children were also reported to have them.
Advocacy groups seized on the new numbers as further evidence autism research and services should get more attention.
"Autism is now officially becoming an epidemic in the United States," said Mark Roithmayr, president of Autism Speaks.
In response to the lastest CDC figures, which he calls "shocking," Congressman Chris Smith (R-Robbinsville) said swifter action must be taken to find the root cause of the disorder and devise more treatments for autistic children.
"We as a nation must do much more, especially to determine causation and ensure early diagnosis, so interventional care can begin as early as possible," said Smith.
"The stakes are so high: the quality of life of so many children is at risk. We need research, new treatments and a path to a cure."
Smith is the Co-Chairman of the Congressional Coalition on Autism Research and Education and authored the 2000 Autism Statistics, Surveillance, Research and Epidemiology Act legislation that created one of the first comprehensive federal programs to research autism. The Smith-sponsored Autism Reauthorization Act of 2011will allocate another $693 million over three years to fund research grants and early detection, intervention and education programs.
"Prevention, treatment and ultimately a cure for this developmental disability must be our highest priority," he said. "We need to bring a "Manhattan Project' type focus to this essential life saving work. Delay is not an option."
The CDC study is considered the most comprehensive U.S. investigation of autism prevalence to date. Researchers gathered data from areas of 14 states, including New Jersey, looking specifically at 8-year-old children because most autism is diagnosed by that age. They checked health and school records to see which children met the criteria for autism, even if they hadn't been formally diagnosed. Then the researchers calculated how common the disorder was in each place and overall.
An earlier report based on 2002 findings estimated about 1 in 150 children that age had autism or a related disorder such as Asperger's syndrome.
Autism is diagnosed by making judgments about a child's behavior; there are no blood or biologic tests. For decades, the diagnosis was given only to children with severe language and social impairments and unusual, repetitious behaviors. The definition of autism has gradually expanded, and "autism" is now shorthand for a group of milder, related conditions, including Asperger's.
Many parents are aware of the early warning signs.
Kelly and Mike Samson of Westfield said they noticed something wasn't right with their son, Matthew, when he was just 3 months old.
He was different from the other babies, they said. He didn't have the same attention to toys and seemed distant.
"He just never developed that reciprocal smile," Kelly Samson said. "He would see part of my face -- but he would never see me."
Matthew was diagnosed at 18 months and began therapy four months ago. His parents have already noticed a difference.
Now 2, Matthew notices his surrounding more clearly, makes eye contact and communicates, they said.
Whether environment and pollution, genetics, or a combination, also contributes to New Jersey's higher-than-average autism rates has yet to be determined, experts say.
"There's been a lot of debate why New Jersey's at the top," said Roger Kurlan, director of the movement-disorders program at Overlook Medical Center, who is researching whether autism is hereditary. "Virtually every human disease is a combination of genetics and environmental factors ... Genetics looks to be the most important factor in the development of autism."
Mary O'Dowd, the state health commissioner, said New Jersey has been in the forefront of treatment for autism.
"New Jersey has the some of the best autism resources in the country and has for more than 30 years," she said. "There is great awareness of autism in New Jersey among health professionals, educators and families. New Jersey has one of the best systems in the nation for identifying, diagnosing and caring for children with Autism Spectrum Disorders."
Parents have also been known to move to the state simply for the expertise the medical community here has for autistic children.
Jill Harris, director of the autism program at the Children's Specialized Hospital in Mountainside, said there's also been a change in treatment philosophy.
"We've always actively looked for autism, but I think the tools are getting better, and we're getting wiser about what it looks like," she said.
The Samsons, who bring Matthew to Children's Specialized Hospital, say his treatment is working and they can only hope his progress will continue.
We have no idea what he's going to be doing one year from now, five years from now, or 20 years from now," Kelly Samson said. "We have seen leaps and bounds in his progress, and we're glad we live in New Jersey. We're thankful for every little baby step."