Autism center at Rutgers focuses on community, takes multidisciplinary approach to outreach
After receiving a $4 million grant from the New Jersey Department of Health, Rutgers is now home to the New Jersey Autism Center of Excellence (NJACE).
The center, led by principal investigator Elizabeth Torres, scientific director James Millonig and clinical liaison Jill Harris, aims to promote research, professional training and public awareness to improve the quality of life for individuals and families affected by autism.
“The purpose of the center is basically threefold. We’re trying to create something that is innovative, collaborative and comprehensive,” Harris said.
For years, Rutgers has been at the forefront of internationally recognized autism research as well as the development of services for people with autism. This commitment to advancing autism treatment and care is what puts Rutgers in a strong position to house NJACE, Harris said.
NJACE is also partnering with the Children’s Specialized Hospital, which Harris said is one of the largest providers in the region of services for children, teens and families affected by autism.
Autism is an umbrella term that encompasses many different medical conditions that lie in the nervous system and manifest through difficulties with social communication, Torres said.
“There’s an expression that if you know one person with autism, you just know one person with autism,” she said.
The center hopes to stratify the spectrum and advance personalized treatment methods while recognizing and building on the strengths of individuals with autism.
To accomplish these goals, Torres said NJACE is working with an advisory board of patients, family members, school program representatives and other stakeholders to identify priorities and gaps in services. In addition to the advisory board, the center also holds brainstorming events that bring different parts of the community together to collaborate and develop the center’s goals.
“It’s driven by self-advocacy, it’s driven by family, it’s driven by the consumers of the treatments,” said Torres.
While the center itself does not conduct research, it does help to support autism research at Rutgers and all over the state.
“What we do is lower the barriers so that researchers can accomplish their goals,” Torres said.
This comes in the form of buying cutting-edge equipment or recruiting participants for experiments, she said. The latter has proven to be a problem in autism research though, since the majority of current research is focused on young white males and does not adequately represent females, minorities or adults with autism.
The center, while also carrying out its other goals, is addressing this problem.
“We haven’t been wasting any time,” Torres said, “We’ve been recruiting participants through the school system and the Children’s Specialized Hospital.”
One of the center’s upcoming projects includes creating an online repository of autism resources. The repository, along with training modules and webinars, will also make information accessible and easy to navigate for students, families and service providers.
With new technology, the center also hopes to bring autism research to different fields such as machine learning, computer science and biomechanical engineering. The goal of this, Torres said, is to create a multidisciplinary approach to autism. To that end, the center hopes to educate people in other fields about autism and vice versa.
“We have new techniques for scientific computation and artificial intelligence that can help us stratify this heterogeneous disorder,” Torres said.
This was not the case 10 years ago, she said. Now it has become part of the center’s mission to bring people up to speed, which means crossing boundaries and integrating people from all different walks of life.
“There’s a lot of work to be done and the way that work gets done is by involving as many interested people as possible,” Harris said.
Having recently awarded a Faculty Scholarship Award to Dr. Sallie Porter of the Rutgers of School of Nursing, Harris said the center is encouraging the development of autism-centered curriculum and courses that students can take in the future.
The center is also supported by a number of volunteers, including students from the computer science department who are putting together NJACE’s website and training modules. Harris and Torres said students can also get involved by reaching out for lab tours, learning about autism and stopping by the NJACE’s booth on Rutgers Day.
“Hopefully it’s the students that will be the generation to solve the conundrum of autism and help us understand how the human brain works,” Torres said.