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).
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.
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.
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 email@example.com and to firstname.lastname@example.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.