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

Please support this data collection effort (www.dsm5asdsurvey.org) 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 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!

Comments

[Jeannette Bishop]

Babies exposed prenatally to thimerosal through both the "regular" flu shot and the H1N1 vaccine (pushed 09-10) will be reaching the age of "early detection" about the time these changes are proposed for publication. Among other motives, is the potential ability to cloud any increase in the autism rate in children born circa 2010 possibly one motive?

[AussieMum]

Terri Lewis,

Whenever I am in conversation about my son and someone "slams" back at me-"How do you know it was the vaccines?"

I always reply- "How do you know that it wasn't the vaccines?"

We, the parents of vaccine injured children are the experts!

Elizabeth Gillespie

[s]

I believe the reasoning to change criteria was originally to rename stigmatized nick names like "retarded" and "multiple personality." This change is not for that purpose and begs the question - "who is this really for?"
And I have asked every parent in my community if they want the change. The answer?: crickets.
So, if its not parents, then who?

[Debbie]

This is all because insurance company's dont want to pay..

[Anne McElroy Dachel]

A story in the Jerusalem Post on August 19, 2012, reported on an international conference that had been held in Jerusalem.
One of the keynote speakers http://www.jpost.com/Sci-Tech/Article.aspx?id=281741, Dr. Steven Shore, talked about the DSM5 changes and we were told, "Some health insurance firms are behind the restructuring of the DSM V definitions, he maintained."

I've heard about the power and influence the insurance industry has over our health officials and medical organizations, so it's not surprising.

As more and more states mandate insurance coverage for children with autism, insurance companies would be the top beneficiaries of the DSM changes.

Anne Dachel, Media

[Terri Lewis]

These people are always "moving the goalposts." First, they failed to diagnose it when it initially started happening (what pediatrician in the 70s or early 80s was able to figure out anything?)It was rare then, but it had been identified!

Now--they expand the definition only to tighten it again! Meanwhile, kids still go unproperly diagnosed, undiagnosed completely, and misdiagnosed far more than they are "overdiagnosed."

Just like the lying that went on at Simpsonwood to make the vaccine/mercury/autism connection "disappear," they once again lie to make disease disappear. As they did with polio (thank you cmo), as they do with "seasonal flu" (make up a figure--36,000!--and reuse it every year), as they do with everything.

The front page of our local paper recently featured big pictures of kids with cancer--followed by a feel-good article of course, and much sympathy for the kids involved woven throughout the article.

Meanwhile, you tell your friends and neighbors your child was hurt by vaccines, and at least half of them still have the gall--and idiocy!--to say, "How do you know it was the vaccines?"

Gee. . .because 2 million parents are telling the same truth, and the lying government keeps telling different lies? Even if it hadn't been obvious--even if I had been too stupid to put two and two together at the time--my more intelligent friends GET IT now. They don't ask why; they just avoid talking about why.

[cmo]

The proposed DSM 5 redefinition of autism is simply "moving the goalposts" to enhance the Pharma field position.

If they can take something 100 times more common than polio in the 50's, and redefine it as only 45 times more common than polio... it will cease to be a problem.