State autism center aims to connect community with researchers

While autism affects 1 in 59 children in the United States, the spectrum disorder affects 1 in 34 children in New Jersey. Now a new program’s been created to connect people with autism spectrum disorder to the research, resources and services they need. The New Jersey Autism Center of Excellence is state-funded and led by a team from Rutgers University, Robert Wood Johnson Medical School, and Childrens Specialized Hospital. Among them, director Elizabeth Torres who sat down with Correspondent Briana Vannozzi.

Vannozzi: The center’s been up and running for about two weeks now, in earnest. Where will you focus the research?

Torres: We will have to uncover the areas that we need to focus on. For example, we know that research on adults is going to be very important. Research on the female phenotype of autism will be very important.

Vannozzi: Who or what is guiding where your research goes?

Torres: At the moment, it’s been sort of, the community informs the researchers. The researchers inform the governor’s counsel.

Vannozzi: Is that new? Did we often have community input for something like this?

Torres: No, this is a new thing. What makes the center very exciting and very new is that we now have these advisory boards from the community and from the professionals and we let them interact and inform each other. So that’s one of our main advantages, is that we’re going to have a very well-informed set of goals and updated through meetings.

Vannozzi: Where is the state lacking right now? This is funded through the Governor’s Advisory Council. There’s a lot of money being put toward research. Where is the state lacking when we talk about this?

Torres: Well, so research occurs at many layers, and one of the layers that we need to emphasize is the adult population. How to create vocational training programs, how to make adults have autonomy — how to make decisions on their own, and take the bus, you know.

Vannozzi: Have independence.

Torres: Yeah, have independence. There’s research also on how to teach the community about autism. Because I know there’s layer of research — how to train the professionals and the community, in general, about autism. That’s something that we need to emphasize.

Vannozzi: So just changing our perspective of someone who is on the spectrum, or what work they might be able to do.

Torres: Yes. What work they might be able to do, how to embrace the person with autism that is just — has some differences. We need to understand what those are so we don’t assume that what we take for granted is there. Something, for example, like feeling your body is something we take for granted because we feel it. A person with autism may feel the body differently. Maybe in pain, maybe not — the sensation might not be the same as we have.

Vannozzi: If I’m a parent or a family member of someone with Autism Spectrum Disorder, what will the center help me do? What can I go to the center for?

Torres: So, what we will be able to do is provide information. We’re compiling information from all the centers — other centers in the state — and all the hospitals. We’re compiling information — that’s what we are going to be able to do — to help parents find ways to interact with the services that are out there. They may not be aware of them.

Vannozzi: So you’re creating a network so that these family members can then go and find the resources that they need.

Torres: We’re creating a network of knowledge. Many layers.

Vannozzi: One of the things we talk about so often is the prevalence rate in New Jersey. It’s 1 in 34 children in New Jersey is diagnosed with ASD. But 1 in 59 in the U.S. Why is there that large gap? Why do we have such a high prevalence in New Jersey?

Torres: Well, we don’t know the answer to that, but certainly we have better services than everywhere else and because our governance and the Office of the Governor and the council have put so many resources. And for the past nearly 20 years we have the Governor’s Counsel supporting the medical research and the medical treatments, so we are top in the nation. And people come from abroad, as well as from the rest of the U.S., to live in New Jersey to receive these services.

Vannozzi: Do you plan to look at the efficacy of these treatments? We’ve been doing early intervention, but do we know if it’s working?

Torres: Absolutely. One of the things that I bring, personally, to the center is this innovative edge. I work with technology and I work in other fields, of the medical fields, so I want to bring that model and bring the technology into autism and connect the dots — connecting all the layers of research. So, absolutely, we’re going to get people in computer science, in engineering, in other fields that are not necessarily clinical fields, involved in this major transformation that we want to bring technology. We want to measure precisely what happens in the nervous system of the child. All the way from the heart rate to the intestines — you know, the gut system that is connected to the brain. We want to actually understand the nervous system — the massive nervous system of the child as you intervene. What is the outcome of that intervention? What is actually happening to the nerves of that system? To the brain, to the nerves transmitting information to the brain? What is happening there?

Vannozzi: Looking at it as a system. We didn’t always look at it as a whole-body system when we were diagnosing.

Torres: Exactly, yeah. We need to look at is as a full network, and that network connects to the social network. And that’s the way we’re going to solve this problem. We’re going to connect with everybody who’s very positive. Everyone in this ecosystem of autism has the best intentions in the world to help everyone who’s touched by this condition, and we’re going to work together. We are going to form networks of positive attitudes, and we are also going to reveal what has not worked, so that we can openly discuss what has not worked in the past, so we avoid those points. But together, that’s the way that we’re going to solve this problem.

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