NJ Encourages Grant Recipients to Work Together on Autism

Andrew Kitchenman | July 9, 2013 | Health Care
Coordination of research, treatment epitomized by new center based at Montclair State

Amy Mansue, CEO of Children’s Specialized Hospital in Mountainside, who touts coordinated efforts by autism researchers and caregivers.
Studying and treating autism poses daunting challenges – but the difficult task could made easier if researchers and healthcare providers who work with autistic children coordinate their efforts.

State officials and healthcare leaders credited the new Montclair State University Autism Center for Excellence for emphasizing such an approach as new grants were announced by the state council that funds autism research.

The center, which was launched last year, encourages healthcare providers and autism researchers to work together in order to speed up development of new treatments.

A total of $4.5 million was awarded by the state in June to seven projects ranging from research to examine biological markers that could be used to identify children with autism to a study of the transportation needs of those with autism.

Those with autism spectrum disorder have impaired social interactions, language development and communication skills. The federal Centers for Disease Control estimates that 1 in 49 New Jersey children have autism, among the highest rates in the country.

The largest grant award — $2.25 million over five years – was given to Children’s Specialized Hospital to develop a new autism screening tool for diagnosing children from culturally diverse families.

Hospital CEO Amy Mansue said increased coordination among institutions has practical benefits.

Traditionally, when institutions receive grants, “We spend all of our time in the administering of those elements of the grant that we won,” she said.

Encouraging coordination enables grant winners to “look to both solve problems and leverage discovery in ways that have not been done in the past.”

For example, Children’s Specialized Hospital’s grant will be coordinated other grant recipients, including researchers from Rutgers University and its Robert Wood Johnson and New Jersey medical schools, Rowan University and its School of Osteopathic Medicine, and St. Peter’s University Hospital in New Brunswick.

Mansue said her hospital’s staff will be able to help researchers find families interested in having their children participate in studies.
“Having someone at the table (that has worked directly with families) can lend a different perspective, so science can be modified to keep its purity but allow meaningful participation,” Mansue added.

While the Governor’s Council for Medical Research and Treatment of Autism has existed since 1999, Mansue believes that the new center will be better able to achieve the original goals of the council – to contribute to current treatment as well as research leading to new scientific discoveries about the autism.

Children’s Specialized Hospital personnel have found that black and Hispanic children have been diagnosed with autism later than white children, due to flaws in how screening tests were used to diagnose children. The grant will help study a new approach to screening that was developed by the hospital’s staff.

“If we can get kids diagnosed earlier, the treatment can mitigate behaviors that can lead to problems for the rest of their lives,” Mansue said.

Peter H. Bell, executive vice president of the national advocacy group Autism Speaks, said early intervention is essential. Bell’s wife, Elizabeth Bell, serves on the state council.

“That is a significant issue that we face in this community and it’s very important that we create greater awareness and the potential for children of all backgrounds to be diagnosed in a timely fashion and be able to access the treatments that we know will work in helping children to get the best outcomes possible,” Bell said.

These early interventions include applied behavioral analysis, an approach that seeks to modify behavior as early as possible, preferably by age 3.

Mary E. O’Dowd, N.J. state health commissioner

“I think have an autism center of excellence is a very positive development for really orchestrating and coordinating the research efforts in New Jersey,” Bell said, noting that the state is already among the national leaders in funding research and treatment.

State officials also hailed the center’s potential for researching and developing new treatments and approaches.

“It is exciting because this is something that we’ve been working on, to improve the efficiency in our delivery of funding, to get more grants out more often and really get them to be more organized and orchestrated,” said Mary E. O’Dowd, the state health commissioner.

“It’s not just individual grants, randomly provided. We’re really trying to be more thoughtful and structured and organized and we think we’ll see better outcomes from the research and the use of that research and appropriate care in the future, as a result,” O’Dowd said.