DSM-5 Update: The Committee Digs In
All:
DSM-5 developments have slowed down a tad, and we're partly responsible as we huddled close and (1) waited to see how the DSM Committee responded to the criticism, and (2) mapped out what we hope to, and can, do.
In short, the Committee isn't budging. Despite the controversy, the flawed field trials, the disingenuous damage control conducted by Committee members, and Fred Volkmar's certainty that more studies are forthcoming that back up the Yale and LSU studies (concluding 32%-40% of those currently diagnosed with a spectrum diagnosis would lose it under the proposed changes) . . . it appears that they will attempt to push these changes through.
We, as non-researchers, could never tell whose study was accurate and whose was not. Therefore, given the wide dispute as to the effect of the changes, we will soon be calling for an Independent Scientific Review of the data collected as well as a Risk/Benefit Analysis of the impact on services. And yes, we have a backup plan if they say "no."
Below, please find links to the important pieces that have crossed our paths over the last two weeks. Also, you can download the Yale study that broke this story on January 19 by clicking here. Now that it is published, Dr. Volkmar has made it available to us in it's entirety (please also remember that we will be honoring Fred for all his efforts at GRASP's annual benefit on May 15, 2012).
Third Letter to the APA by Allen Frances, MD
Remember that Dr. Frances was the lead architect on the DSM-IV. He has openly criticized the findings and work habits of the DSM-5, and we thank him for his insight.
On the Delay of the new ICD Codes (ICD-10)
This is more explanation of how the ICD codes are used, as well as news of the delay. This is good news as (like Dr. Frances points out) it allows for the DSM-5 to be delayed again.
Committee Standing Firm on Proposed DSM-5 Changes
Notice the limb that Kupfer goes out on again. At least he's stopped citing "It involves a use of treatment resources. It becomes a cost issue."
Neutral assessment piece from the Simons Foundation Autism Research Initiative.
"What can I do?"
If reducing the DSM-5 criteria threatens your child's special education funding, your services as an adult, or your self-esteem as an adult, then please sign the GRASP petition, and (even if you have signed) maintain the following outline without letup:
1. Sign the (slow-loading) petition found here, and forward the link with your appeal for people to sign everywhere and anywhere. Again: forwarding (especially through any and all appropriate social media sites) is arguably more important than signing. So when you ask people to sign, ask them to forward as well.
2. Call the American Psychiatric Association (APA)—during normal business hours; once every day, if possible, at 703.907.7300. Yes, they are telling you to email instead. But we ask that you please instead be the articulate, impassioned, and peaceful nuisance that is needed in this debate, and not adhere to their instructions.
3. Email the your letters to apa@psych.org and to dsm5@psych.org
4. Check our Facebook page for updates, as well as to view the history and prior articles surrounding this issue since it broke on January 19th. This is especially helpful for those of you who feel you need talking points for your emails to the APA.
Thank you!!!
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Comment by Diana Hortsch on April 9, 2012 at 5:51pm -
Thank you for this and all you are doing on this issue.
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Comment by Michael John Carley on April 9, 2012 at 5:57pm -
Our pleasure, Diana.
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Comment by john berak on April 10, 2012 at 4:47am
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Don't be surprised if DSM replaces Asperger's with a personality disorder: "The Autistic Personality Disorder." The problem is the recent explosion in childhood diagnoses of Asperger's has caused DSM to question the validity of the diagnosis. To a certain extent, I agree: Asperger's is a developmental disability and not an entitlement. As an adult with the disorder, I doubt all these children have the disorder. If they really do have the disorder and grow up to be like me, then welcome to hell.......
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Comment by Karen on April 10, 2012 at 1:41pm
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If the studies are true that obesity in mothers and the older age of fathers each have positive correlations to the incidence of autism in children, and the rate of obesity is increasing and people are waiting to have kids, wouldn't it stand to reason that the rate of autism is increasing as well?
It would be interesting to see a graph plotting these variables over the last 15 years.
Thank you for everything you are doing and your search for the Truth.
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Comment by Lyudmila on May 3, 2013 at 11:36pm -
To a certain extend I personally almost like the idea to group all the variable "Asp." possessors into 2 groups: almost "idiots"- or quazi handicaps who needs 24/7 special care and in no way would be employed, and-- ALL others who are able to be educated and to have a job..from time to time. I returning to read GRASP after my own family member said today: " that's it, the Asp. is non existing definition, and you are just a mess of hoarding and bipolarity". But logically... it is already SPECTRUM anyway. And all the talks WHAT are the reasons to be THAT, while some have THAT, obesity, or pesticides,or vaccination -all that means " what is in fault" . Well, I still think in terms "WHAT is the divine reason of THAT", because the least thing on Earth I would want --is to lose that mysterious, drug like Hell/paradise of being THAT, a mess of bipolarity and God knows of how many more pitiful qualities. I would say, if everything with definition is finally the question of insurance, paid care, educational conditions, juridical system- then yes lets fight -for those of us who can not fight themselves. But basically, the acknowledge of some specific traits that belong and very similar in statistically important part of humans-- the acknowledged condition does not change the status. We are existing, and the glossary "Aspergers" is expressing our similarity to each other and the differences with those lucky ones who are not us.. I trying to say: I was leaving and coming back-forth GRASP forums, groups, even stopping to read of anything related to Asp., since I understood that I truly prefer to be "weird" between "normal others" instead of to be "normal in my group, that called previously Aspergers". Probably DSM 5 meant to exclude such like me, blatant Asp., who very well adjusted to idea to be"odd, weird, awkward '. And it even add some charisma and even might benefit ...in a certain good circumstanses. ///Hey, where is here option "delete your post"???
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Comment by Lyudmila on May 3, 2013 at 11:49pm
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Hah! And next minute- after posting that- I went through the link and see:
HUGE News: NIMH (the National Institute of Mental Health) rejects the DSM-5!!!
http://mindhacks.com/2013/05/03/national-institute-of-mental-health...And immediately, immediately, bipolarity turned its best: WE ARE EXISTING?! So good to exist.
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