(410 ILCS 201/5)

Sec. 5. Legislative findings and purpose.

(a) The General Assembly finds that:

(1) the incidence of autism spectrum disorders has increased significantly in Illinois, as in other states;

(2) the Centers for Disease Control and Prevention estimates that autism spectrum disorders affects 1 in 166 children;

(3) autism spectrum disorders affect children of every racial, ethnic, and socioeconomic background, and occurs in every part of Illinois;

(4) little is known about causes 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 a combination thereof;

(5) because there is no biologic marker for autism, surveillance for this disability presents several technical and logistic challenges that must be overcome;

(6) families of children with autism experience tremendous psychological and financial stress related to their child's disability;

(7) children with autism require long-term care and services; special education costs for a child with autism average more than $19,000 per year nationwide, more than 3 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 per year; these costs continue as children become adults, which can be more than $50,000 per person;

(8) genetic and environmental factors have been suggested;

(9) there is no known cure for autism, although some available therapies, treatments, and medicines may relieve the severity and symptoms associated with the disorders;

(10) there exists no unified effort to collect and analyze information on autism spectrum disorders and their potential effects on public health, families, schools, and the economy in Illinois;

(11) the lack of comprehensive information has caused concern on the part of Illinois citizens and a lack of effective control by the State;

(12) it is the obligation of the State to inform and protect the citizens of Illinois by developing a comprehensive and integrated data system on autism spectrum disorders and public health; and

(13) the establishment of an Autism Spectrum Disorder Registry will help better define who is affected by autism and the impact of autism; define the range of impairments and disability associated with autism; identify better mechanisms to refer persons with autism to available services; and provide a research tool for universities, physicians, and policymakers to conduct studies in Illinois.

(b) It is the purpose of this Act to establish a unified statewide project to collect, compile, and correlate information on public health and autism spectrum disorders, to be known as the Autism Spectrum Disorders Registry. The information is to be used to assist in the determination of public policy and to provide a source of information for researchers and the public, except when public disclosure of the information would violate the provisions of this Act and other applicable laws concerning confidentiality.

(c) In particular, the purpose of the collection of autism spectrum disorder incidence information is to:

(1) monitor incidence trends of autism spectrum disorders to detect potential public health problems, predict risks, and assist in investigating clusters;

(2) more accurately target intervention resources for communities and patients and their families;

(3) inform health professionals and citizens about risks, early detection, and treatment of autism spectrum disorders;

(4) promote high quality research to provide better information for the study of autism spectrum disorders, treatment, interventions, and services, and the impact of autism spectrum disorders on families, schools, public health, and the economy; and

(5) promote Illinois as a national leader in research into the causes, effects, and treatment of autism spectrum disorders.

(Source: P.A. 94-632, eff. 8-19-05.)