Autism tracking, treatment gain support with new registry

Friday, October 09, 2009
STAR-LEDGER STAFF

Families dealing with autism may soon see the benefits of a database designed to track cases and direct people with the disorder to health care and other services, officials said yesterday.

The New Jersey Autism Registry, which went live Oct. 1, is open to neurologists, psychiatrists and others who are required by law to report diagnoses of the neurological disorder.

The database is confidential and restricted to medical professionals. Staff members of more than 50 hospitals have received training to access the system.

The registry has several purposes: to identify possible geographical "hot spots," to guide families to promising treatments and to help the state plot where to direct resources for future cases. It is similar to the state's long-standing Special Child Health Services registries for Down syndrome, craniofacial anomalies, cardiovascular disorders and other defects.

"The New Jersey Autism Registry is a great advancement in the state's ability to accurately identify the prevalence of autism, and that will enable us to better serve those families in the future with the most appropriate array of services," Health Commissioner Heather Howard told parents at the Douglass Developmental Disabilities Center in New Brunswick.

New Jersey has the country's highest rate of autism, a mysterious neurological disorder, with 1 in 94 children affected, according to the federal Centers for Disease Control and Prevention.

The national rate had been 1 in 150, but this week the CDC revised the figure, to 1 in 100 individuals affected between the ages of 1 and 17. Authorities said the statistics don't necessarily indicate a rise in incidence, and instead could be the result of more accurate diagnoses.

Autism has no known cause, although researchers believe it is linked to environment and genes. Cases are plotted along a "spectrum," with symptoms ranging from barely noticeable to profoundly debilitating. Advocates say that people with autism aren't less intelligent, but their brains function differently.

Some people with autism can have trouble socializing or communicating, may engage in compulsive behavior such as head-banging and can overreact to unexpected sounds or flashing lights. Some have remarkable talent in mathematics and the arts.

This year Gov. Jon Corzine signed legislation requiring insurers to cover up to $36,000 a year per individual for behavioral intervention treatments.

In 2007, he signed bills designed to address autism issues, with millions of dollars for research and regional treatment centers; training for police, fire and other emergency workers; a panel to address issues for adults with autism; and a focus on job, education and housing arrangements.