Original Paper

Journal of Autism and Developmental Disorders

, Volume 41, Issue 1, pp 110-121

Stability of Initial Autism Spectrum Disorder Diagnoses in Community Settings

  • Amy M. DanielsAffiliated withDepartment of Medical Informatics, Kennedy Krieger InstituteDepartment of Mental Health, Johns Hopkins Bloomberg School of Public Health
  • , Rebecca E. RosenbergAffiliated withDepartment of Medical Informatics, Kennedy Krieger Institute
  • , J. Kiely LawAffiliated withDepartment of Medical Informatics, Kennedy Krieger InstituteDepartment of Pediatrics, Johns Hopkins University School of Medicine, Johns Hopkins Medical Institutions
  • , Catherine LordAffiliated withUniversity of Michigan Autism and Communication Disorders Center (UMACC), University of Michigan
  • , Walter E. KaufmannAffiliated withCenter for Genetic Disorders of Cognition & Behavior, Kennedy Krieger InstituteDepartments of Pathology, Neurology, Pediatrics, Psychiatry, and Radiology, Johns Hopkins University School of Medicine, Johns Hopkins Medical Institutions
  • , Paul A. LawAffiliated withDepartment of Medical Informatics, Kennedy Krieger InstituteDepartment of Pediatrics, Johns Hopkins University School of Medicine, Johns Hopkins Medical Institutions Email author 

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Abstract

The study’s objectives were to assess diagnostic stability of initial autism spectrum disorder (ASD) diagnoses in community settings and identify factors associated with diagnostic instability using data from a national Web-based autism registry. A Cox proportional hazards model was used to assess the relative risk of change in initial ASD diagnosis as a function of demographic characteristics, diagnostic subtype, environmental factors and natural history. Autistic disorder was the most stable initial diagnosis; pervasive developmental disorder—not otherwise specified was the least stable. Additional factors such as diagnosing clinician, region, when in time a child was initially diagnosed, and history of autistic regression also were significantly associated with diagnostic stability in community settings. Findings suggest that the present classification system and other secular factors may be contributing to increasing instability of community-assigned labels of ASD.

Keywords

Diagnosis stability Children Autism spectrum disorders Community settings