Sec. 2. Findings
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Congress makes the following findings: Autism (sometimes called classical autism ) is the most common condition in a group of developmental disorders known as autism spectrum disorders. Autism spectrum disorders include autism as well as Asperger syndrome, Retts syndrome, childhood disintegrative disorder, and pervasive developmental disorder not otherwise specified (usually referred to as PDD–NOS), as well as other related developmental disorders. Individuals with autism spectrum disorders have the same rights as other individuals to exert control and choice over their own lives, to live independently, and to participate fully in, and contribute to, their communities and society through full integration and inclusion in the economic, political, social, cultural, and educational mainstream of society.
Individuals with autism spectrum disorders have the right to a life with dignity and purpose. While there is no uniform prevalence or severity of symptoms associated with autism spectrum disorders, the National Institutes of Health has determined that autism spectrum disorders are characterized by 3 distinctive behaviors: impaired social interaction, problems with verbal and nonverbal communication, and unusual, repetitive, or severely limited activities and interests. Both children and adults with autism spectrum disorders can show difficulties in verbal and nonverbal communication, social interactions, and sensory processing.
Individuals with autism spectrum disorders exhibit different symptoms or behaviors, which may range from mild to significant, and require varying degrees of support from friends, families, service providers, and communities. Individuals with autism spectrum disorders often need assistance in the areas of comprehensive early intervention, health, recreation, job training, employment, housing, transportation, and early, primary, and secondary education. Greater coordination and streamlining within the service delivery system will enable individuals with autism spectrum disorders and their families to access assistance from all sectors throughout an individual’s lifespan.
A 2009 report from the Centers for Disease Control and Prevention found that the prevalence of autism spectrum disorders is estimated to be 1 in 110 people in the United States. The Harvard School of Public Health reported that the cost of caring for and treating individuals with autism spectrum disorders in the United States is more than $35,000,000,000 annually (an estimated $3,200,000 over an individual’s lifetime). Although the overall incidence of autism is consistent around the globe, researchers with the Journal of Paediatrics and Child Health have found that males are 4 times more likely to develop an autism spectrum disorder than females.
Autism spectrum disorders know no racial, ethnic, or social boundaries, nor differences in family income, lifestyle, or educational levels, and can affect any child. Individuals with autism spectrum disorders from low-income, rural, and minority communities often face significant obstacles to accurate diagnosis and necessary specialized services, supports, and education. There is strong consensus within the research community that intensive treatment as soon as possible following diagnosis not only can reduce the cost of lifelong care by two-thirds, but also yields the most positive life outcomes for children with autism spectrum disorders.
Individuals with autism spectrum disorders and their families experience a wide range of medical issues. Few common standards exist for the diagnosis and management of many aspects of clinical care. Behavioral difficulties may be attributed to the overarching disorder rather than to the pain and discomfort of a medical condition, which may go undetected and untreated. The health care and other treatments available in different communities can vary widely. Many families, lacking access to comprehensive and coordinated health care, must fend for themselves to find the best health care, treatments, and services in a complex clinical world.
Effective health care, treatment, and services for individuals with autism spectrum disorders depends upon a continuous exchange among researchers and caregivers. Evidence-based and promising autism practices should move quickly into communities, allowing individuals with autism spectrum disorders and their families to benefit from the newest research and enabling researchers to learn from the life experiences of the people whom their work most directly affects. There is a critical shortage of appropriately trained personnel across numerous important disciplines who can assess, diagnose, treat, and support children and adults with autism spectrum disorders and their families.
Practicing professionals, as well as those in training to become professionals, need the most up-to-date practices informed by the most current research findings. The appropriate goals of the Nation regarding individuals with autism spectrum disorder are the same as the appropriate goals of the Nation regarding individuals with disabilities in general, as established in the Americans with Disabilities Act of 1990 ( 42 U.S.C. 12101 et seq. ): to assure equality of opportunity, full participation, independent living, and economic self-sufficiency for such individuals.
Finally, individuals with autism spectrum disorders are often denied health care benefits solely because of their diagnosis, even though proven, effective treatments for autism spectrum disorders do exist.
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