Journal of the American Academy of Child & Adolescent Psychiatry
Volume 48, Issue 5 , Pages 474-483, May 2009

Timing of Identification Among Children With an Autism Spectrum Disorder: Findings From a Population-Based Surveillance Study

Dr. Shattuck is with the Brown School of Social Work, Washington University in St. Louis; Dr. Durkin and Mr. Maenner are with the Department of Population Health Sciences, University of Wisconsin-Madison; Dr. Newschaffer is with the Department of Epidemiology and Biostatistics, Drexel University; Dr. Mandell is with the Department of Psychiatry, University of Pennsylvania School of Medicine; Drs. Giarelli and Pinto-Martin are with the School of Nursing, University of Pennsylvania; Ms. Wiggins, Dr. Rice, and Mr. Baio are with the National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention; Dr. Kirby is with the Department of Community and Family Health, University of South Florida; Dr. Lee is with the Department of Epidemiology, Johns Hopkins University. Dr. Cuniff is with the University of Arizona College of Medicine

Accepted 24 November 2008.

Disclosure: Dr. Ricè serves as a trainer for professionals in the assessment of autism spectrum disorders using the Autism Diagnostic Observation Scale. The other authors report no conflicts of interest.

Abstract 

Objective

At what age are children with an autism spectrum disorder (ASD) identified by community providers? What factors influence the timing of when children are identified with ASDs? This study examined the timing of when children with ASDs are identified.

Method

Data came from 13 sites participating in the Centers for Disease Control and Prevention's 2002 multisite ongoing autism surveillance program, the Autism and Developmental Disabilities Monitoring Network. Survival analysis was used to examine factors that influence the timing of community-based identification and diagnosis.

Result

Data from health and education records reveal that the median age of identification was 5.7 years (SE 0.08 years). Parametric survival models revealed that several factors were associated with a younger age of identification: being male, having an IQ of 70 or lower, and having experienced developmental regression. Significant differences in the age of identification among the 13 sites were also discovered.

Conclusions

The large gap between the age at which children can be identified and when they actually are identified suggests a critical need for further research, innovation, and improvement in this area of clinical practice.

Key Words:  pervasive child development disorders , autism , diagnosis , epidemiology , survival analysis

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 This work was supported by the Centers for Disease Control and Prevention, Cooperative Agreements UR3/CCU523235 and UR3/DD000078, the University of Wisconsin's Waisman Center (T32 HD07489), and the Washington University Center for Mental Health Services Research (P30 MH068579). Additional funding for graduate student support for data analysis was provided by the University of Wisconsin.These data were collected under a cooperative agreement funded by the Centers for Disease Control and Prevention. The findings and conclusions in this article are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention.This article is the subject of an editorial by Dr. Eric Fombonne in this issue.

PII: S0890-8567(09)60065-4

doi:10.1097/CHI.0b013e31819b3848

Journal of the American Academy of Child & Adolescent Psychiatry
Volume 48, Issue 5 , Pages 474-483, May 2009