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Wednesday, December 17, 2003

W.Va. launches autism registry


Experts hope to find cause of disorder

By Jennifer Bundy
The Associated Press

Daniel Ryan, a bright-eyed boy in a red T-shirt, opens his front door with a cheerful smile and then returns quickly to the couch and his pile of favorite photographs.

Snapshots of the 6-year-old are scattered across the living room in his South Charleston, W. Va., home; a speech therapist suggested the pictures might help Daniel stay focused.

The photos also are a key to socialization for Daniel, who has trouble making friends because, like 507 other West Virginia schoolchildren, he is autistic.

Nationally, the number of children with autism - a neurological disorder that affects social interaction and communication - has been increasing rapidly. No one knows whether there really are more autistic people or if there is simply improved awareness and diagnoses.

West Virginia is launching an ambitious effort to unravel those mysteries as the nation's first state to establish a registry of residents diagnosed with autism.

Beginning Jan. 1, health care providers who determine a West Virginia resident has autism or a related disorder must report the patient's name, diagnosis, symptoms and related conditions to the registry at Marshall University's Autism Training Center. Even physicians in other states must report on West Virginia residents they diagnose.

Aggressive approach

"We realized there were no registries in the United States that would be able to track the number of cases of autism year to year," says Barbara Becker-Cottrill, the center's executive director.

"How can we move forward and find the answer of what causes this if we don't know how many people are affected?"

About 1.5 million Americans are believed to have some form of autism, according to the Autism Society of America. While researchers at the federal Centers for Disease Control and Prevention once thought there were four or five cases per 10,000 people, they now put the number at about six per 1,000.

Alarming increase

In West Virginia, state education officials say the number of schoolchildren - ages 3 to 21 - with autism has increased from 108 in 1994 to 508 now.

West Virginia is not the only state to see an increase. A California study earlier this year indicated the number of autistic school children in that state had nearly doubled in the last four years to 20,377.

School-age statistics do not count children under 3 or adults with autism. West Virginia will count all residents diagnosed after Jan. 1.

The information will be confidential, but researchers at Marshall and elsewhere will be able to use it to track potential increases in the number of people diagnosed.

It also could be used to track trends, such as whether there are more cases in one geographic area likely to have the condition.

Autism is a spectrum disorder, with symptoms and characteristics varying from mild to severe. It is the most common of five Pervasive Developmental Disorders, a category of neurological problems characterized by impairment in several areas of development. The others - which also will be included in the registry - are Asperger's Syndrome, Childhood Disintegrative Disorder, Rett's Disorder and Pervasive Developmental Disorder-Not Otherwise Specified.




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