New Jersey has significantly more children diagnosed with autism than other states — and rates are still on the rise. But experts agree, that while concerning, these numbers also reflect a high level of parental awareness, a concentration of skilled providers, strong system to document diagnoses, and robust network of community and school services to support families in need.
A by the federal agency released Thursday showed that one in 34 eight-year-olds in New Jersey was diagnosed with an autism spectrum disorder in 2104, a 19 percent increase from 2012, and more than 200 percent higher than the prevalence detected in 2000. In addition, the research showed the Garden State had nearly double the overall prevalence of autism, among that age group, for all 11 states that the CDC studied.
“These numbers are pretty striking,” said Sen. Robert Menendez (D-NJ), who joined researchers Thursday to discuss the CDC’s findings, part of an ongoing autism-prevalence survey funded in part by the Autism Cares Act of 2014, which he sponsored. It’s hard to find anyone in New Jersey who has not been touched by the disease, he said, and while the state has an excellent network of services, more must be done to track the disorder, diagnose young people, and help families cope with the challenges involved.
On the radar screen
Autism — which is recognized each April during Autism Awareness Month — is also on the radar of state health officials. The Department of Health’s budget proposal for next year includes $170 million for its early intervention system, which helps families connect with resources. Gov. Phil Murphy has also called for an additional $8.5 million to go toward autism services for children with New Jersey Family Care, the state’s Medicaid program; this allocation would attract another $8.5 million in federal dollars.
“This is an incredible advancement,” Suzanne Buchanan, executive director of Autism New Jersey, which advocates for services and assists families, said of the Family Care funding. “We need to get kids services as early as possible so they can have the best outcomes and be as independent as possible later in life.”
An estimated 40,000 New Jersey residents under 21 have been diagnosed with autism, according to Walter Zahorodny, an associate professor of pediatrics at Rutgers New Jersey Medical School, and leader of the Garden State portion of the CDC study, which involved a rigorous review of public health records and individual case files in parts or all of the states involved. (More than 27,000 are registered with the DOH’s Autism Registry, one of eight state-based databases nationwide.)
And while previous research suggested autism rates in the United States were leveling off, Zahorodny said the new data suggests close to 3 percent of eight-year-olds here are affected; for boys, the rate is much higher, at 4.5 percent. On the plus side, there is little racial disparity in the Garden State diagnoses.
Zahorodny said New Jersey’s rates are likely higher than those shown in the other regions studied by the CDC largely because we do better at recognizing and diagnosing the condition, and getting youngsters connected with treatment. Tools like the Autism Registry are helpful. The review also includes medical and education records, and school officials here have done a good job at documenting and addressing autism.
State health commissioner Dr. Shereef Elnahal said the department was proud of the “robust diagnostic and intervention services, which may be contributing to the high incidence rates.” With a strong system for identifying, diagnosing, and documenting these cases, he said, “more children are getting evaluated and referred for services than in areas where diagnostic services are scarce.”
But Garden State rates may grow even more after the state launches a new program to aggressively screen kids under age three, and also monitor those who are between and 16, in an effort to better understand patterns of diagnoses and care, which Zahorodny described during a conference call with the New Jersey senator.
“These increasing rates only mean we need to redouble our efforts,” Menendez said, noting that while he lobbied to have additional funding for autism programs included in the new federal budget, the Autism Cares Act is due to expire next year. “It’s not that the challenges posed by autism are going away,” he added.
Thomas Baffuto, executive director of the Arc of New Jersey, which provides family services, community education, and more, said the rising prevalence also underscores the importance of protecting federal funding for Medicaid. “It’s a wake-up call for all of us,” he said.
Both Baffuto and Buchanan also said more needs to be done to suppor individuals with autism who are “aging out” of the state’s system of care. While treatment and support services are traditionally coordinated for youth through school and community groups, residents with autism who reach age 18 may struggle to find housing, employment, and other services on their own.
Another need they flagged is better pay for the direct-support professionals, or frontline providers, who earn an average of $10.50 an hour — slightly over minimum wage — in return for assisting individuals with a wide range of tasks essential to daily living. Buchanan said $20 million was included in the current budget to provide these workers one-time bonuses, and advocates are working with the Murphy administration and }egislature to see if funding can be identified to continue this effort next year.
Autism spectrum disorder (ASD) is a developmental condition that impacts an individual’s communication and social interaction abilities; it ranges significantly, with some individuals displaying only mild behavior changes and others unable to speak, interact, or live independently. According to the CDC survey, more than half of the children diagnosed have average or above-average intelligence. While the causes are hard to pinpoint, environmental factors and parental age may influence the rates.
Range of treatments
Treatment can involve applied behavior analysis — a process than can help youngsters learn to sit still, listen, and follow directions — occupational and speech therapy, among others. Medications are occasionally added to help control anxiety, depression, or other symptoms, according to Dr. Malia Beckwith, who heads up developmental and behavioral pediatrics for the autism program at Children’s Specialized Hospital, based in New Brunswick. There is not an “autism drug” or cure for the condition, she said; the goal is to treat and manage symptoms.
In New Jersey, any child under age three can be evaluated by experts associated with the state’s early intervention network, based on concerns raised by a parent, pediatrician or other caregiver. (The DOH, The Arc, and Autism New Jersey all provide lists of resources, and Autism New Jersey also staffs a hotline on weekdays: 800-4-AUTISM.) Treatment can be done at home or at school; the Garden State’s educational support system for autistic students is considered one of the nation’s strongest, experts said.
Diagnosing and treating youngsters early is key, Beckwith said, as children’s brains continue to develop until they are 21, so intervention early on can have a more lasting impact. While the diagnosis — which generally lasts for life — can be hard for parents to hear, acting promptly is important, and services can always be modified down the road.
“No parent wants to think of their child as having a deficiency, because we all see the amazing things (our children) can do,” Beckwith said. “But oftentimes when we put on that label, like a diagnoses, that can open the door for the child to be able to get the services and the intervention that they need.”
“All of us share the ultimate goal — that we want the very best outcome for the child,” she added.
The CDC survey has roots in New Jersey, thanks to a 1998 study the federal agency did to assess suspected high rates of autism in Brick Township. The first wider study began two years later and it has since evolved into a sampling that, with the latest 2014 data, included parts or all of 10 other states: Arizona, Arkansas, Colorado, Georgia, Maryland, Minnesota, Missouri, North Carolina, Tennessee, and Wisconsin. Overall, the study showed the prevalence of autism in these areas among eight-year-olds rose from 6.7 cases per 1,000 children in 2000 to 16.8 in 2014, an increase of nearly 150 percent.
The Garden State data is pulled from research in four counties: Essex, the home of Newark-based Rutgers Robert Wood Johnson Medical School, adjacent counties Hudson and Union, and Ocean County, so researchers could continue to monitor the Brick community. New Jersey’s prevalence rate is 29.4 cases per 1,000 children, based on the 2014 data.