WHEREAS, the American Psychiatric Association and World Health Organization diagnostic manuals define "autism spectrum disorder" as a pervasive developmental disorder, atypical autism, Asperger Syndrome, Rett Syndrome, childhood disintegrative disorder, a pervasive developmental disorder not otherwise specified, or a special education classification for autism or other disabilities related to autism; and

WHEREAS, the incidence of autism spectrum disorders increased significantly in Hawaii and the Centers for Disease Control and Prevention estimates that autism spectrum disorders affect one in one hundred sixty-six children; and

WHEREAS, autism spectrum disorder affects children of every racial, ethnic, and socioeconomic background and occurs in every part of the State; and

WHEREAS, little is known about the cause of autism, although research has indicated that autism is due to an abnormality of brain development that may be related to environmental factors, pharmacological agents, and other prenatal or early childhood exposures, genetics, or any such combination; and

WHEREAS, because there is no biologic marker for autism, surveillance for this disability presents several technical and logistical challenges that must be overcome; and

WHEREAS, families of children with autism experience tremendous psychological and financial stress related to their child's disability; and

WHEREAS, children with autism require long-term care and services, and special education costs for a child with autism average more than $19,000 per year nationwide -- more than three times the cost of the average student -- and more than any other special education category. Some specially structured programs cost over $40,000 per year and care in a residential school costs between $80,000 and $100,000 annually. These costs continue to be incurred as children become adults and can amount to $50,000 per person; and

WHEREAS, while genetic and environmental factors have been suggested and some available therapies, treatments, and medicines may relieve the severity and symptoms associated with the disorders, there is no known cure for autism; and

WHEREAS, no unified effort exists to collect and analyze information on autism spectrum disorders and their potential effects on public health, families, schools, and the economy in Hawaii; and

WHEREAS, the lack of comprehensive information and a lack of effective control by the State have caused concern on the part of Hawaii residents; and

WHEREAS, it is in the interests of the people of Hawaii for the State to develop a comprehensive and integrated data system on autism spectrum disorders and public health in order to inform and protect all residents of the State; and

WHEREAS, the establishment of an autism spectrum disorder registry will help to:

now, therefore,

BE IT RESOLVED by the Senate of the Twenty-third Legislature of the State of Hawaii, Regular Session of 2005, that the Department of Health is requested to develop a statewide, comprehensive, and integrated data system on autism spectrum disorders, to be known as the autism spectrum disorder registry; and

BE IT FURTHER RESOLVED that the Director of Health is requested to report progress on this effort to the Legislature, together with any necessary proposed legislation, no later than twenty days prior to the convening of the Regular Session of 2006; and

BE IT FURTHER RESOLVED that a certified copy of this Resolution be transmitted to the Director of Health.

Report Title:

Autism Spectrum Disorder Registry; DOH to Establish