Public Health Monitoring of Developmental Disabilities with a Focus on the Autism Spectrum Disorders

Catherine E. Rice, D. Schendel, Christopher M Cunniff, N. Doernberg

Research output: Contribution to journalArticle

22 Citations (Scopus)

Abstract

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.

Original languageEnglish (US)
Pages (from-to)22-27
Number of pages6
JournalAmerican Journal of Medical Genetics, Part C: Seminars in Medical Genetics
Volume125 C
Issue number1
StatePublished - Feb 15 2004

Fingerprint

Developmental Disabilities
Public Health
Communication
Autism Spectrum Disorder
Special Education
Inborn Genetic Diseases
Information Storage and Retrieval
Centers for Disease Control and Prevention (U.S.)
Autistic Disorder
Genetic Markers
Hearing Loss
Biomarkers
Newborn Infant
Psychology
Costs and Cost Analysis

Keywords

  • Autism spectrum disorders
  • Developmental disabilities
  • Monitoring
  • Public health
  • Surveillance
  • Tracking

ASJC Scopus subject areas

  • Genetics(clinical)
  • Neuropsychology and Physiological Psychology
  • Neuroscience(all)

Cite this

Public Health Monitoring of Developmental Disabilities with a Focus on the Autism Spectrum Disorders. / Rice, Catherine E.; Schendel, D.; Cunniff, Christopher M; Doernberg, N.

In: American Journal of Medical Genetics, Part C: Seminars in Medical Genetics, Vol. 125 C, No. 1, 15.02.2004, p. 22-27.

Research output: Contribution to journalArticle

@article{0eb13d05183f48bf9d1eca412b127ede,
title = "Public Health Monitoring of Developmental Disabilities with a Focus on the Autism Spectrum Disorders",
abstract = "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.",
keywords = "Autism spectrum disorders, Developmental disabilities, Monitoring, Public health, Surveillance, Tracking",
author = "Rice, {Catherine E.} and D. Schendel and Cunniff, {Christopher M} and N. Doernberg",
year = "2004",
month = "2",
day = "15",
language = "English (US)",
volume = "125 C",
pages = "22--27",
journal = "American Journal of Medical Genetics, Part C: Seminars in Medical Genetics",
issn = "1552-4868",
publisher = "Wiley-Liss Inc.",
number = "1",

}

TY - JOUR

T1 - Public Health Monitoring of Developmental Disabilities with a Focus on the Autism Spectrum Disorders

AU - Rice, Catherine E.

AU - Schendel, D.

AU - Cunniff, Christopher M

AU - Doernberg, N.

PY - 2004/2/15

Y1 - 2004/2/15

N2 - 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.

AB - 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.

KW - Autism spectrum disorders

KW - Developmental disabilities

KW - Monitoring

KW - Public health

KW - Surveillance

KW - Tracking

UR - http://www.scopus.com/inward/record.url?scp=0942265687&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=0942265687&partnerID=8YFLogxK

M3 - Article

C2 - 14755430

AN - SCOPUS:0942265687

VL - 125 C

SP - 22

EP - 27

JO - American Journal of Medical Genetics, Part C: Seminars in Medical Genetics

JF - American Journal of Medical Genetics, Part C: Seminars in Medical Genetics

SN - 1552-4868

IS - 1

ER -