The site of the highest rate of childhood autism nationwide, New Jersey will also now be home to a center dedicated to improving research, treatment, and services for the tens of thousands of residents living with some form of the disorder.
Rutgers University, in New Brunswick, has launched the New Jersey Autism Center of Excellence thanks in large part to $4 million in funding from the Governor’s Council for Medical Research and Treatment of Autism, a state Department of Health panel founded nearly two decades ago to support studies and care efforts with funding from a surcharge on traffic violation fines.
The funding — $800,000 a year for five years — is designed to help the center create a comprehensive system to connect researchers, autism treatment providers, and those impacted by autism; to benefit clinical trials related to autism; and to identify and build on the most effective treatments. Leaders hope it will become a national model.
“Given that New Jersey rates are higher than the national average, it is critical that we invest funding to better understand ASD and ensure improved treatment for individuals with ASD,” said Dr. Shereef Elnahal, the state health commissioner.
State officials also announced last week that they would commit an additional $17 million to New Jersey’s Medicaid program, or FamilyCare, to expand autism-related services, starting early next year; benefits are currently limited to a group of some 200 children under age 13 who are part of a pilot program, officials said.
Better Medicaid coverage
Gov. Phil Murphy signaled his intention to do this when he included some $8.5 million for greater autism benefits in his original budget proposal for the current fiscal year, which started in July; the federal government will provide the balance.
“This gives young people with Medicaid coverage access to appropriate screening and treatment,” said Department of Human Services Commissioner Carole Johnson, who has also led Medicaid changes to enhance benefits for smoking cessation, diabetes prevention, and hepatitis treatments.
Federal data released this spring by the Centers for Disease Control and Prevention shows that one in 34 eight-year-olds in New Jersey was diagnosed with an autism spectrum disorder (ASD) in 2014, a 19 percent increase from the 2012 numbers, and more than 200 times higher than the prevalence found in 2000. The surveys involve data from 11 states which, together, showed that one in 59 eight-year-olds nationally was diagnosed with some form of autism in 2014, up from one in 68 two years earlier.
Elnahal and other officials have stressed that New Jersey’s high rates also reflect a significant awareness of the condition, a concentration of skilled providers, a strong system to document diagnoses and a robust network of community and school services. Walter Zahorodny, a Rutgers pediatrics professor who led the state’s portion of the federal study, estimated that 40,000 residents under 21 have the disease; more than 27,000 are registered with the DOH’s autism registry, one of eight systems nationwide.
More aggressive screening of children
In addition to the registry and the governor’s council, which has distributed more than $39 million in funding over the past decade, New Jersey has a growing system of early interventions to help connect families with services. The state has also launched a new effort to aggressively screen children under age three and to more closely monitor older children in an effort to better understand patterns of diagnosis and care, Zahorodny said in April.
“Indeed, families of people with autism come to New Jersey from across the globe due to the exceptional services offered here,” explained Elizabeth Torres, an associate professor of psychology at Rutgers New Brunswick who will head up the new center. “But like the rest of the nation, we lack a comprehensive network that allows researchers, clinicians and families to connect. We also face barriers to research and don’t have a scientifically grounded understanding of how well certain treatments work.”
Torres and her team hope the new center will help fill these gaps and better connect those involved with autism services in New Jersey. She will be joined by James Millonig, an associate professor of neuroscience and cell biology at Rutgers Robert Wood Johnson Medical School, who will oversee the center’s research, and Jill Harris, director of autism services at the New Brunswick-based Children’s Specialized Hospital, who will lead the provider training effort.
The group — which will also work with biopharmaceutical companies and other corporations, as well as other universities and autism centers — held their first meeting last week. A consumer advisory board made up of parents and autism advocates will also inform the center’s work and future, they said.
Input from family members
Harris said the team has already contacted individuals diagnosed with the disorder, their family members, and providers to better identify and understand the current gaps in service.
“Their input helps ensure that the goals and planned activities of the (center) meets these needs including creating training for current and next generation health care providers to address needs of people with ASD across the lifespan,” Harris said.
The experts acknowledge that much of the work has focused on childhood autism, so there is a need to expand care and services to help those who are diagnosed to live as independently as possible as they age. “Autism is not just a childhood disorder,” Torres noted.
There is also a need for additional earlier intervention services, since the first signs can appear early in a child’s development, plus more effective outcome measures to determine what interventions work, they said. The center will seek to develop a system of age-dependent assessments to guide both intervention and treatment, stimulate new research and improve ongoing clinical trials related to ASD, and construct a data repository to help connect diverse researchers and their findings.
“We are merely guessing at what treatments will work or when such treatments will be most effective,” Torres said of the current system.
Trying to change public perceptions
In addition, the program will work to change the public perception of autism as a psychologically-based disorder to a more holistic view that better accounts for an individual’s needs and goals, the leaders said.
ASD is a developmental condition that impacts communication and social interaction and its severity can range significantly; according to the CDC, more than half the children diagnosed have average or above-average intelligence. The cause is hard to pinpoint, but researchers agree environmental factors and parental age may influence the rates — factors the new center plans to analyze as part of its work.
“A staggering number of adults with autism live without any hope to be embraced by our society,” Torres said. “The descriptions of autism as a mental illness, a social deficit, a lack of empathy or a mind that cannot theorize about others’ behaviors or actions obscures a person’s inherent abilities. We need to change the model to help children with autism become adults who are an integral part of our workforce.”