Timing of identification among children with an autism spectrum disorder: findings from a population-based surveillance study.
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.


METHODS
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.


RESULTS
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.
Shattuck
Paul T
PT
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. Electronic address: pshattuck@wustl.edu.
Durkin
Maureen
M
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.
Maenner
Matthew
M
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.
Newschaffer
Craig
C
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.
Mandell
David S
DS
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.
Wiggins
Lisa
L
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.
Lee
Li-Ching
LC
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.
Rice
Catherine
C
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.
Giarelli
Ellen
E
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.
Kirby
Russell
R
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.
Baio
Jon
J
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.
Pinto-Martin
Jennifer
J
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.
Cuniff
Christopher
C
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.