Challenges in the Diagnoses of Autism Spectrum Disorders in the Community

Background: Autism spectrum disorders (ASD) are very complex and heterogenous disorders. Making these diagnoses in children and adolescents can be very challenging for practitioners in the community with limited resources and training in this field. The diagnostic step is important since it allows for the implementation of early specific interventions and appropriate allocation of public funds. Objectives: To examine the rate of agreement between diagnoses of Autism Spectrum Disorder (autistic disorder (AD), Asperger's disorder (ASP), and pervasive developmental disorder, not otherwise specified (PDD, NOS)) made by practitioners in the community and a comprehensive evaluation using gold-standard instruments. Methods: Children and adolescents between the age of 5 and 17 years with a previous diagnosis of an autism spectrum disorder (ASD) made by a community provider were recruited to participate in this study. Participants were identified from an autism specialty clinic after being referred for mostly treatment purposes. Evaluations were completed in an autism specialty clinic and included the Autism Diagnostic Interview-Revised, Autism Diagnostic Observation Schedule and Whechsler Abbreviated Intelligence Scale. The Social Responsiveness Scale, Child Behavior Checklist and Sensory Profile Questionnaire were also obtained. Consensus diagnosis was based on DSM-IV criteria and was generated by a committee of 3 investigators with two members with extensive experience in working with children and adolescents with autism spectrum disorders. Results: To date, 9 subjects have been evaluated. Of these 4 were previously diagnosed with ASP, 2 with AD, 1 with PDD NOS. These diagnoses were made by neurologists (2), child psychiatrists (5), child psychologists (2). One participant had received two different ASD diagnoses by two different psychiatrists and the most recent one was considered. The consensus diagnoses conference revealed that 5 out of 9 met criteria for an ASD with all participants being diagnosed with PDD, NOS after comprehensive review of clinical research data including videos observation. Conclusions: These preliminary observations suggest that community providers continue to face challenges in the diagnosis of ASD with a tendency to over diagnose to possibly allow these children to receive optimal treatments. However, final conclusions cannot be made before a larger number of children are evaluated. As this study is ongoing, additional data and analyses will provide more insight into the significance of these findings especially that recent epidemiologic studies are relying on community providers for diagnoses.