A new statewide center based at Rutgers University–New Brunswick has been established to improve research and treatment of autism as well as services for people with autism spectrum disorder (ASD).
The New Jersey Autism Center of Excellence, which is funded by the Governor’s Council for Medical Research and Treatment of Autism, the New Jersey Department of Health, will be led by Elizabeth Torres, an associate professor in psychology at Rutgers–New Brunswick; James Millonig, an associate professor in neuroscience and cell biology at Rutgers Robert Wood Johnson Medical School; and Jill Harris, director of Research Development and Coordinator of Autism Services at Children’s Specialized Hospital.
The new center is positioned to become a national model for programs that integrate autism research, clinical care and education, said Torres. While autism affects one in 59 children in United States, one in 34 children has the disorder in New Jersey.
“We are one of the only state in the nation that for nearly 20 years has maintained the Governor’s Council for Medical Research and Treatment of Autism. Indeed, families of people with autism come to New Jersey from across the globe due to the exceptional services offered here,” Torres said. “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.”
A consumer advisory board composed of parents and advocates will inform the center on the unmet needs of the autistic population and help shape the center’s vision for the future. “We reached out to people with ASD, families and service providers to better understand where the ASD research and service gaps are,” says Harris. “Their input helps ensure that the goals and planned activities of the NJACE meets these needs including creating training for current and next generation health care providers to address needs of people with ASD across the lifespan.”
Torres notes the lack of adequate insurance coverage for basic needs for people with this condition, and families cannot afford treatment that can help their children. “Since there are no physical outcome measures that provide a solid account of how well certain treatments work, parents get discouraged,” she said. “Then, children age beyond school years and services end.”
Over the coming year, the center will create a collaborative, interdisciplinary network of health care providers, researchers, families, biopharmaceutical companies, universities, corporations, small businesses and other autism centers. The goal is to establish best practices, share information on successes and challenges to research, educate researchers and clinicians and locate treatment and employment for people of all ages with autism spectrum disorder (ASD). “We will stimulate innovative cutting-edge research, connect researchers to experts in their respective fields, assist with reporting and help communicate important findings to the autism community,” said Millonig.
“The members of the New Jersey Autism Council are committed to the next steps in order to advance and disseminate the understanding, treatment, and management of ASD,” said Caroline Eggerding, the Council’s chair. “We look forward to working with the New Jersey Autism Center of Excellence to carry out the vision of coordinated innovative transformation research, treatment and professional education.”
Of prime research interest: How effective are specific treatments for individuals with autism at different stages of life? Retroactive research on the trajectory of people diagnosed with autism as far back as 15 years ago can provide crucial insights into this lifelong condition and allow clinicians to understand what interventions succeeded or failed in promoting autonomy, independence and self-sufficiency during the transition from childhood to young adulthood, Torres said. The center will create a de-identified and centralized scientific data repository to help connect research outcomes from grantees from diverse layers of the knowledge network, spanning from patient’s contributed data, to digital biomarkers and environmental exposures, the microbiome and genetics.
“Autism is not just a childhood disorder,” said Torres. “By three years of age, we have more certainty that something deviates from typical neurodevelopment; but the evolution toward this condition starts earlier. As such, we must intervene early, but physical outcome measures required for objective evaluations do not currently exist and as such there is no data on treatments’ effectiveness in any of the existing data repositories we have access to. We are merely guessing at what treatments will work or when such treatments will be most effective. The support of the center will aid researchers in obtaining age-dependent physical outcome measurements on personalized treatments that are scientifically grounded. This could be particularly useful to guide early intervention programs, even before autism is detected and officially diagnosed.”
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The center also seeks to change the public perception of ASD, shifting it from an exclusive psychological- or psychiatric-centered description of symptoms to one that more holistically ascertains the physiological underpinnings of this condition. The aim is to improve the person’s autonomy and physical independence to promote healthy social living.
“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.”