Help Needed to Collect Data on the New DSM-5 ASD Criteria

Please support this data collection effort by SafeMinds and The Holland Center. EBCALA is very concerned about the proposed DSM 5 redefinition of autism. The ramifications of a new autism definition are far reaching and could be devastating. Everything from epidemiology to services could be affected for individuals with autism. Those dealing with autism need more answers and support, not more hurdles. Please read the important information below.

A coalition of groups within the autism community is extremely concerned about potential impacts of the proposed criteria for Autism Spectrum Disorders in the American Psychiatric Association’s Diagnostic and Statistical Manual (DSM) – 5th Edition. The new criteria are supposed to be finalized by December 2012 for May 2013 publication.

Since February 2012, five studies have been published indicating the proposed DSM-5 ASD criteria will significantly reduce the number of people diagnosed with ASD compared to the current DSM-IVTR criteria:

McPartland and Volkmar – 39.4% decrease
Worley and Matson – 32.2% decrease
Matson et al. – 47.8% decrease
Gibbs et al. – 23.4% decrease
Taheri and Perry – 37% decrease

The Field Trials which identified 83 children with ASD, were reported by Dr. Swedo, chair of the APA’s Workgroup on Neurodevelopmental Disorders. They indicate that the decrease in the number of identified ASD cases using the proposed criteria would be in the single digits, but this would be counter-balanced by the inclusion of some cases that had been missed by the DSM-IVTR. The Workgroup is concerned primarily with the new criteria accurately diagnosing new cases of ASD as they present in the community and does not think that the decreases in the published studies are accurate. Currently, there is no data on adult patients using the new criteria.

Online Survey to Collect Data on New ASD Cases Using the Proposed Criteria

SafeMinds and the Holland Center want to collect and analyze much more data on the proposed criteria through an online survey to assess its impact on autism diagnosis in the community.

This survey can be used by any clinician who speaks English anywhere in the world. The data will be made available to the NDD Workgroup directly. Cases are needed urgently given the tight time frame for publication of the proposed criteria!

Please help us spread this email and this link to any clinician who diagnoses people with autism:

www.dsm5asdsurvey.org

We would like hundreds of clinicians around the world to enter a few cases each. The survey is designed to be quick and straightforward. Thank you!

Katie Weisman
Jennifer Larson
SafeMinds
The Holland Center