New Jersey has the nation’s highest rate of autism among children, with 1 in 45 having the spectrum of disorders, according to new data released yesterday by the US Centers for Disease Control and Prevention.
The new study prompted two state representatives to call for greater action by both state and federal officials to determine both what triggers and how to treat a number of conditions in the the autism spectrum that are characterized by difficulties in social interaction, problems with verbal and nonverbal communication, and repetitive behaviors.
"It is a pandemic," said Rep. Chris Smith, R-4th, at a press conference with officials from the national organization Autism Speaks, following the release of the new CDC study.
Nationally, the CDC found 1 in 68 children with autism in 2010, based on a study of 8-year old students in 11 states, including New Jersey. That's 30 percent higher than the estimate for 2008 and 120 percent higher than the 2000 estimate. CDC officials said they don't know what is causing the increase in the prevalence of the condition, though some may be due to the ways in which children are identified, diagnosed and served.
New Jersey's rate of 1 in 45 is the highest ever recorded by the CDC.
"It's not just disturbing, it's numbing," Smith said. "There is reason for alarm."
"New Jersey has one of the best systems in the nation for identifying, diagnosing and documenting children with Autism Spectrum Disorders," said Mary O'Dowd, the state's health commissioner. "New Jersey is one of only four states with an Autism Registry that requires reporting by neurologists, pediatricians, nurses and other autism providers so children can be referred for resources and services. Approximately, 12,400 are registered and that has heightened awareness among parents and providers of indicators for Autism Spectrum Disorders."
Walter Zahorodny, an assistant professor of pediatrics at Rutgers New Jersey Medical School, has been a principal investigator for the CDC's studies from the beginning and told Rutgers Today there are no easy answers to the questions surrounding autism.
"This state does have some of the best resources anywhere for detecting and caring for autism, but if the higher documented prevalence were only due to better detection, sooner or later the numbers would plateau and other states would catch up. That hasn’t happened," he said. "In 2002, the prevalence in New Jersey translated to one child in 94. In 2006, it was one child in 57. The latest numbers show one child in 45. We need to start acknowledging that what once was a rare disorder now affects two percent of the state’s children, and unfortunately I think the numbers will continue to rise."
Zahorodny said there's likely nothing in the state's environment influencing the findings, but the state's demographics probably have something to do with its unenviable ranking.
"Many people here are more affluent and better educated than elsewhere, and those people tend to marry each other and have children later in life. It is considered a risk factor for autism if both the mother and father are older when the child is born," he said. "It’s also very likely that our findings apply beyond New Jersey. The same demographic profile exists in counties throughout the New York metro area, and I would expect that if those areas were monitored as closely as we have studied New Jersey, their autism prevalence would be found to be similar."
While the number of school children specifically labeled as autistic is likely too small -- children with autism may also be placed in a number of other categories, including specific learning disabilities or multiple disabilities -- it has nevertheless grown more than 250 percent between 2002 and 2013.
According to the CDC data, autism affects boys far more often than girls -- 3.4 boys for every girl -- and whites more than any other race or ethnicity.
The new study did have one bright spot for parents, finding an increase in the percentage of autistic children with average or above average intelligence -- about least half of all those with autism spectrum disorders have an IQ of at least 85.
Numbers don't really tell the story of families struggling with children who have autism, though.
“Behind each of these numbers is a person living with autism,” said Autism Speaks President Liz Feld. “Autism is a pressing public health crisis that must be prioritized at the national level. We need a comprehensive strategy that includes the research community, policymakers, educators, and caregivers coming together to address our community’s needs across the lifespan.”
Sen. Robert Menendez, D-NJ, agreed. Speaking at the Autism Speaks press conference, he said the CDC report is "a clarion call for increasing efforts at the federal level" for autism funding.
“We must redouble our efforts and secure the funding needed to not only ensure critical autism programs aren’t shuttered but to find new diagnostic tools, early intervention techniques, therapies, and lifelong support and services to ensure individuals with autism can fulfill their God-given potential," said Menendez, author of the Combating Autism Act.
Smith agreed, saying, "We need to be much more generous" in investing in autism research.
O'Dowd said that the Governor's Council for Medical Research and Treatment of Autism has provided nearly $25 million in research grants since 2008 and that the health department is at the forefront of supporting research, including a Center for Excellence at Montclair State University.
She urged parents to be vigilant in taking action when there is a suspicion of a developmental delay that could be due to an autism spectrum disorder. The department's Early Intervention System, funded by $135 million, provides early identification and referral, service coordination, evaluation and assessment, and services for children from birth through age 3 with disabilities.
"The earlier a child with Autism Spectrum Disorder or developmental delay is identified and connected to services, the sooner services can be provided to ensure the child is able to reach their full potential," O'Dowd said.