Online DSM-5 Autism Survey Launched by SafeMinds and The Holland Center to Assess Impact of New Criteria

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Advocacy groups concerned about reduction in autism cases due to redefinition.

SafeMinds in partnership with The Holland Center

"If these studies are correct, we would see millions of people declared ineligible for services and insurance coverage that they desperately need." Katie Weisman, SafeMinds Director of Communications and Public Policy.

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 – 5th Edition. The new criteria are supposed to be finalized by December 2012 for May 2013 publication.

SafeMinds, the Holland Center, the National Autism Association, the Elizabeth Birt Center for Autism Law and Advocacy, Talk About Curing Autism and Autism Action Network have teamed up to create an online research survey – http://www.dsm5asdsurvey.org. The survey site will allow licensed clinicians to enter data on newly diagnosed people with autism to see the impact of the proposed criteria changes.

Since February 2012, five studies have been published indicating that the proposed DSM-5 ASD criteria may significantly reduce the number of people diagnosed with ASD compared to the current DSM-IVTR criteria. “The published studies so far are not reassuring,” stated Katie Weisman, SafeMinds Director of Communications and Public Policy. “Their results show anywhere from a 23%-47% decrease in the number of cases of autism spectrum disorders in previously diagnosed cohorts. It is imperative that we know how the new criteria will affect diagnosis and the accuracy of the new criteria. If these studies are correct, we could see a dramatic impact on the number of people eligible for services and insurance coverage. The shift in criteria may also create major complications for tracking the prevalence of autism spectrum disorders over time. This is not something that our community can take on faith, so we are collecting more information through this survey.”

The Field Trials, which identified 83 children with ASD, were reported by Dr. Susan 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 that 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. The published studies indicate that the children formerly diagnosed with PDD-NOS will be the most impacted.

This research 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! “Our hope is to collect new cases of autism from clinicians around the world,” said Jennifer Larson, Founder of the Holland Center. “When you have conflicting information about something that will potentially devastate our kids’ lives, you just have to take action. We hope that the professionals who care for our kids will help us out by entering cases.”

SafeMinds is a non-profit 501c-3 organization whose mission is to restore health and protect future generations by eradicating the devastation of autism and associated health disorders induced by mercury and other toxicants resulting from human activities.

Holland Center is a MN autism center and a day program for treatment of children with autism. Holland combines what is researched to be the most effective forms of therapy combined with the environmental interventions that have been proven to make a difference in a child's ability to learn.

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Katie Weisman
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