Public health monitoring of developmental disabilities with a focus on the autism spectrum disorders.

Developmental disabilities (DDs) are conditions characterized by physical, cognitive, psychological, sensory, adaptive, and/or communication impairments manifested during development. Approximately 17% of individuals in the United States 18 years and younger have a DD, and for most children the cause of their condition is unknown. Of particular interest are the autism spectrum disorders (ASDs), characterized by unusual social, communication, and behavioral development. Previously autism was thought to be a rare condition, but the number of children receiving services for an ASD has increased dramatically in the last decade. Concerns about increases in DDs, particularly ASDs, their causes, and the high costs of intervention have highlighted the need for systematic public health monitoring. Service provider data, such as annual reporting of special education services or of state DD programs, do not provide a complete estimate of the rates for DDs, including ASDs. Unlike genetic metabolic disorders or congenital hearing loss (HL) for which newborn screening programs can provide accurate prevalence rates, there are currently no genetic or biologic markers for the ASDs to enable consistent and early identification of affected children. Centers for Disease Control and Prevention's (CDC) Metropolitan Atlanta Developmental Disabilities Surveillance Program (MADDSP) is a model for population monitoring of ASDs/DDs that has been implemented in other states. This article discusses the role of ASD/DD tracking in public health, as well as the challenges of ASD/DD tracking, including case definition and identification, associated conditions, linkages, and data access.

Prevalence of selected developmental disabilities in children 3-10 years of age: the Metropolitan Atlanta Developmental Disabilities Surveillance Program, 1991.

PROBLEM/CONDITION: Serious developmental disabilities affect approximately 2% of school-age children and are lifelong conditions that incur substantial financial and societal costs. REPORTING PERIOD: January 1991-December 1991. DESCRIPTION OF SYSTEM: The Metropolitan Atlanta Developmental Disabilities Surveillance Program (MADDSP) monitors the prevalence of four serious developmental disabilities--mental retardation, cerebral palsy, vision impairment, and hearing impairment--among children 3-10 years of age in the five-county metropolitan-Atlanta area. Children who have at least one of the four developmental disabilities are ascertained through annual review of records at schools, hospitals, and other sources. RESULTS AND INTERPRETATION: During 1991, rates for mental retardation varied by age, race, and sex; rates ranged from 5.2 per 1,000 children to 16.6 per 1,000 children. Regardless of the absolute rate of mental retardation in each of the age-, race-, and sex-specific categories, severe mental retardation (i.e., an intelligence quotient of <50) accounted for one third of all cases. The overall crude rate of cerebral palsy was 2.4 per 1,000 children; however, the rate was higher among black children (3.1 per 1,000 children) than among white children (2.0 per 1,000 children). The rate of moderate to severe hearing impairment was 1.1 per 1,000 children, and the rate of vision impairment was 0.8 per 1,000 children. Rates of hearing impairment were higher among black males than among children in the other race and sex groups, whereas rates for vision impairment varied only slightly between these groups. The rates of the developmental disabilities were not adjusted for possible confounding factors (e.g., maternal education, family income, and various medical conditions). Consequently, the variation in rates may reflect social or other characteristics unique to the study population. ACTIONS TAKEN: MADDSP data will be used to direct early childhood intervention efforts to reduce the prevalence of these four developmental disabilities. MADDSP data also are being used to measure progress toward the year 2000 national objectives for the prevention of serious mental retardation.