The prevalence of autism in New Jersey has spurred extensive study, with biomedical researchers looking at everything from behavioral therapy to genetics to discover autism's causes.
Now the state intends to expand these efforts in research and treatment by supporting the scientists financially -- with $8 million in grants over five years -- and coordinating individual efforts by sharing results in a central office.
It's hoped the new initiative -- called the Autism Center of Excellence -- will "galvanize researchers in New Jersey to be on the cutting edge," said Dr. Clara Lajonchere, vice president of clinical programs for Autism Speaks.
The National Institutes of Health funds more than $200 million in autism research a year, and New Jersey researchers receive a piece of that money for scientific work. "Something that has been lacking in the state has been a coordinated way for smaller groups that are interested in doing clinical studies to really be able to gain access to [autistic] individuals," said Dr. Linda Brzustowicz, who heads a team of more than a dozen scientists at Rutgers University.
That changed last month when the state's health commissioner, Mary E. O'Dowd, announced the new grants that will provide selected scientists the opportunity to learn about the disorder by studying New Jersey residents with autism and their families over an extended period of time.
"It is extremely significant in this economic environment that the state is making a commitment at this level to autism," said Dr. Thomas McCool, head of Eden Autism Services, a treatment center in Mercer County.
Just how many people have autism or a related disorder is unknown, but the federal government says the numbers are growing. In New Jersey, it's believed that autism spectrum disorders affect 1 in 94 children, according to the Centers for Disease Control and Prevention. That includes a wide range of communication, social and behavioral disorders. At its worst, it can leave a child trapped in an impenetrable shell, but many people with autism are high-functioning and others make tremendous strides through treatment.
New Jersey is among the most progressive states for early intervention and private services for autistic children. But with the number of children being diagnosed steadily rising, public schools are feeling the burden on already strapped budgets.
With most cases of autism diagnosed under the age of three, New Jersey has stepped up early intervention and therapy -- including speech, occupational and physical therapy -- under a $140 million program of the state Health and Senior Services Department.
The Autism Center for Excellence is the newest initiative. March 19 is the deadline for applications for the research program, which is funded by a $1 surcharge on fines and penalties from traffic violations. A competitive process will culminate this June when three research teams are chosen to establish autism centers around the state. Each program site will receive up to $450,000 per year for five years. A fourth grant will create a coordinating center, where the data will be gathered and disseminated throughout the scientific community. The coordinating center will receive up to $300,000 per year for five years.
"This funding makes a true commitment to find new and innovative ways to help families," said Dr. Caroline Eggerding, chair of the Governor's Council for Medical Research and Treatment of Autism.
Eden Autism Services in Plainsboro is among the groups hoping to win a state grant. "By investing in research, it helps maximize the potential of each child or adult and hopefully, ultimately, make their lives more meaningful and have a higher quality of life that also will be more cost effective and efficient for the government agencies that have to provide the support for both education and adult services," said McCool, the facility's executive director.
Eden was founded in 1975 and provides early intervention, therapy, education and life and employment skills to individuals with autism from birth through adulthood. It recently moved to its new facility and will begin research this year on ways to develop better behavioral treatment for autism. Eden plans to apply on its own to become one of the three state research centers, and also plans to partner with another group of researchers that is applying for a grant, McCool said.
In the past, autism researchers have collected data from Eden, McCool said. "We also let them come here and look at the programs and services that we deliver, take that data and put that into a research format. This year we have decided that Eden will actually generate its own research. We have always worked with other people, but we felt this year that it was a good time for us to actually build that up a notch."
Autism research is split into several areas, including genetic research that seeks to determine the cause of autism, and biomedical research focused on finding drug treatments, McCool said. Eden's expertise derives from nearly 30 years of exploring behavioral interventions to improve the ability of those with autism to function in society.
"We do education treatment research, as opposed to medical or biological research," McCool said. Eden provides early intervention programs to children aged two and sometimes younger "to really identify those deficits they have, primarily in communication disorders, and provide speech, occupational and physical therapy, a whole stimulation process and early intervention program."
Brzustowicz heads a team of more than a dozen scientists who have been doing genetic research for the past decade into the causes of autism, funded by the National Institute of Mental Health. Her team is also applying to become one of the state research centers, to continue and expand the work currently being done.
It makes sense for New Jersey to launch a state-based autism research program now, Brzustowicz said. "New Jersey has a lot of the components that are necessary to develop centers of excellence. We already have a number of scientists with excellent research programs and this is really an attempt to take that and try to build some coordination around it, and that is a great idea."
The Rutgers group has been studying about 100 families in New Jersey in which one or more individuals have autism, and someone else in the family has a clinically significant language learning disability. "We have done extensive behavioral testing of the entire family and taken blood samples, and what we have recently done is conduct a genome-wide analysis looking for areas within the genomes of these folks that might be harboring genes that are contributing to the autism," she said.
If chosen, the Rutgers group is "interested in starting to broaden out some of our studies," Brzustowicz said. "We still want to focus on the language impairment component of autism, and look at families where there are family members who are not meeting the criteria for autism spectrum disorder but still have evidence of a language learning disability. Now that we have some genetic areas that have been implicated (as contributing to autism) it is a lot easier to take a look at other individuals who may have a slightly different clinical profile and see whether these genetic sites are also implicated. We want to see how much we can generalize these findings."
The Rutgers team has been working with the same families for years, and wants to go back and retest some individuals with autism to see how their language issues have changed. "We know, particularly in a place like New Jersey, where there really are great clinical services, that some of the elements of the illness are amendable to some degree of remediation. So we are interested in looking at some of the same individuals, five, six or seven years after they were originally assessed," Brzustowicz said.
This work could help sort out which elements of the disorder that are controlled by genes, and which are modified by therapy and which ones change naturally during the course of the illness, Brzustowicz said.
Meanwhile, Eden's special education program works with 80 children aged 3.5 to 21, and the Plainsboro facility also provides a residential program for up to 74 adults who live in Eden's "teaching homes, where adults continue to receive education in skill acquisition, to be able to function in the home, and also to be employable in the outside world," McCool said.
Eden has another 102 adults in the adult employment program. It's largest service is outreach "to people who are not in our school or our adult program, people who are in public school or at home or in other programs and are still having difficulty," McCool said.
Eden's staff "goes to where the problem is -– if it's in the school, or the home or even in daycare centers. We will go in and analyze the problem, evaluate the child, look at what kind of treatment modalities would work and then we train families and staff to implement that program," McCool said.
"The thing that is really interesting is that New Jersey is a highly rated state in terms of the clincial services that are provided to kids with autism," said Brzustowicz, the Rutgers researcher. "Folks move to New Jersey to get services when they have a child with autism. Now the state is trying to take that outstanding clinical resource and helping to convert it into something that is going to serve as an invaluable research resource."
Lajonchere of Autism Speaks worked with the state Department of Health on the grant application process for the center of excellence. She applauded New Jersey for aligning its research initiative with the Interagency Autism Coordinating Committee of the National Institutes of Health, which she said "brings together the expertise of scientists, clinicians and advocates and really has set the agenda for autism research."
The state's $8 million commitment "is an incredible initiative amd hopefully it will be a win for autism," Lajonchere said. "This is going to afford researchers in New Jersey a select pot of money to really advance their work. The economic climate is such that it is always hard for researchers to secure grant funding, so this is going to be an infusion of cash that's going to be very well directed and targeted to autism."