DSM Update from GRASP

[Guest guest]

Please forward far and wide to whomever or wherever you deem appropriate . . . Dear all: Oh, brother . . . Four updates to cover: 1. Dr. Lord's astounding statement, and her new campaign slogan2. Dr. Kupfer's attempts (alongside Dr. Darrel Regier) to pretend Kupfer's previous statement never happened.3. Why a " 5 " and not a " V " ? 4. Everyone's (Lord and Regier especially) trying their best to attack Fred Volkmar. But wherrrre's ny? Rather than take a breath and attempt with honesty to rectify the disingenuous damage control following the Jan. 19 outbreak of this story, Committee members, three in particular, are creating more damage to any potential peace-building. Furthermore, don't think for a moment that the shift from the roman numerical system to the Arabic system isn't fascinating—and self-incriminating when put under a microscope. Lastly, we present an email exchange (leaked to GRASP) between Volkmar, Hartford Courant reporter Weir, and Committee member Dr. Regier. The exchange indicates that a large part of any criticism of Volkmar's study may be personal, and not professional. At least Committee member Dr. H. King, after that tragically disingenuous article in Medscape (that insulted us all), knew enough of what he'd done, or tried to do, as he has been thankfully silent ever since. 1. Dr. Lord's astounding statement, and her new campaign sloganWe made the decision not to advertise a ridiculous statement made by Dr. Lord in a late January appearance on the CBS This Morning News Show, where 1 minute into the broadcast she states that “It is possible that kids grow out of (autism). And not everyone who gets a diagnosis of autism continues to have it forever.†Later on in the segment, she goes even further to state that the number of those who " outgrow " their autism is 10-20 percent. Needless to say, we were astounded (such a backwards thought sounds like something Wakefield would say). Yet we didn't want to demonize any of the personalities on the Committee. But now Dr. Lord is assuming the role of DSM-5 Committee spokesperson, and not doing a very reassuring job. She talks of science. But in addition to no proof of this " overdiagnosis " problem they keep throwing at us, where's the proof that we " grow out " of autism? Why would they invalidate the great support work done by teachers or families or colleagues or friends . . .the quality of supports that allows us to navigate better as time goes on? But Dr. Lord has now found her voice. Now, in almost every interview she attempts to downplay the severity of people's experiences with the statement (in differing phrases) of " We can't diagnose everyone in the world with autism. " Most recently this came in a WBUR interview, as well as several prior press appearances. So if we're going to be hearing this as Dr. Lord's mantra, please always counter that this statement implies the overdiagnosis theory, which has not been proven, and which most clinicians we know have not seen except in rare cases. 2. Dr. Kupfer's attempts (alongside Dr. Darrel Regier) to pretend his previous statement never happened.Those of you who've written lately to the DSM-5 Committee are receiving a new response from Dr. Kupfer and Dr. Darrel Regier in which they state, among other things, " " We at APA have been and will continue to be advocates for a full range of services for people with autism and all other neurodevelopmental disorders. We understand the devastating impact that discontinuation of services can have on patients and families. We also recognize that services are determined not just by a diagnosis but also by the severity of symptoms and needs in areas such as education, social skills, activities of daily living, and maintaining personal safety. Even if an individual's diagnosis changes, this does not invalidate the treatments and other services that have worked for him/her, and these services should be continued based on need. " This, however, is a far cry from an earlier New York Times article where Kupfer was quoted as saying, “We have to make sure not everybody who is a little odd gets a diagnosis of autism or Asperger disorder . . . It involves a use of treatment resources. It becomes a cost issue.â€Again, whether true or not true (and in the long run, we feel not true), Kupfer's earlier statement bitterly insinuates that the Committee is taking costs into consideration. They are in charge of our emotional and mental well being for as long as this book is in print. They are not in charge of anyone's budget.And this response is a poor attempt to backtrack from what was perhaps the more honest statement.3. Why a " 5 " and not a " V " ? A great editorial from Bloomberg News recently reminds us that the reasons for changing the coding system for DSM editions is that with the fifth edition they plan on doing revisions of the same edition, so that we would eventually see version 5.1, 5.2...etc., which you can't do with a " V. " The editorial makes a great point in that if you KNOW you're not going to get it right the first time with this new edition, don't put in print. 4. Everyone's (Lord and Regier especially) trying their best to attack Fred Volkmar, but wherrrre's ny? Lord takes any chance she gets to go after Fred Volkmar's study which initially touched off this whole story in the New York Times. And the consistency of her diatribes suggests personal anger perhaps stemming from when Volkmar resigned from the DSM-5 Committee. To be fair, Volkmar's study IS the reason why the DSM-5 Committee is so under fire right now. But if Lord were acting as a professional, and not as if she were caught in a lie (that Volkmar exposed), we'd have to guess that she would be solely defending her work, and proving to people that her earlier statements that we should trust the Committee because everything was fine . . . was true. Committee members have had professional disagreements before, and this time the responsive behavior is vastly different. The email exchange that GRASP obtained is not revelatory in a news sense, but it is another example of Committee members acting on their own, without communication with each other, and with a disappointing pettiness that renders us incapable of trusting them. Again, how can they be in charge of our emotional status when they can't even regulate their own? And as to who's right and who's wrong? Well, the Louisiana State University Dr. Matson/Dr. Worley study that GRASP obtained and quoted, rather corroborates Volkmar's numbers (32.3% in Matson/Worley vs. a rough 40% in Volkmar, citing how many would qualify under the DSM-IV for a spectrum diagnosis, but not the DSM-5). But notice that Committee members aren't attacking the Matson/Worley study. Contact info has been removed from the below email exchanges. From: Weir, Sent: Friday, February 10, 2012 1:25 PMTo: Volkmar, FredSubject: Darrell Regier's commentsHi Dr. Volkmar, I talked to Darrell Regier today; he cites two studies with newer data, one that concludes that the new criteria would decrease diagnoses by only 5 percent and the other concludes that they would actually increase by 1 percent.Also, he said that you have a book about Asperger’s coming out and suggested that it’s in your interest to keep Asperger’s as a separate diagnosis. I just wanted to run these by you to see if you would like to respond, either by email or phone.Incidentally, I talked to Greenberg of the $100 million figure (he’s a Connecticut guy, too). He had some helpful comments about the whole situation.Thanks again,Bill WeirHartford Courant From: Volkmar, FredSent: Friday, February 10, 2012 5:47 PMTo: Weir, Cc: Darrel A. Regier, M.DSubject: RE: Darrell Regier's comments Let me ask Darrel to confirm this quoteI've tried to take a very high road on this and I hope that this is not what he said.Fred Fred R Volkmar, M.D.,Irving B. Professor
Director - Child Study Center,Yale University School of MedicineChief of Child Psychiatry Yale New Haven Hospital-------------------------------------------------From: Darrel A. Regier, M.D [DRegier@...]Sent: Friday, February 10, 2012 6:18 PMTo: Volkmar, Fred; Weir, Cc: ConnorsSubject: RE: Darrell Regier's comments Fred and Bill: I think that there is certainly a better way to phrase this although my experience with changing how journalists present a story has not always been successful. The point I was making is that Fred has a particular interest in Asperger’s, has several books on this topic, and was not in agreement with the DSM-5 Neurodevelopmental Work Group in merging Autism, PDD-NOS, Childhood Disintegrative Disorder, and Asperger’s into a single diagnosis of Autism Spectrum Disorder (ASD). The failure of multiple sites to be able to reliably separate these four subtypes in the ASD, and the scientific evidence that they are all on the same spectrum led to the recommendation by the work group. Fred’s interests, research and publications in this area led him to a different conclusion.I also indicated that I thought there was no reason why individuals within that spectrum could not continue to identify themselves as having Asperger’s, even if there was not a separate code or diagnosis for that subgroup, which has been poorly defined in DSM-IV. Regarding the DSM-5 field trial data, I indicated that we thought that these data would provide the opportunity to compare DSM-IV and DSM-5 prevalence rates that could be generalized to a real clinical population of the full range of children/adolescents/young adults who come into academic treatment centers for care. We do not think that Fred’s data, based on the DSM-IV field trial data are adequate to support a conclusion that 40% of patients with current DSM-IV diagnoses would not be diagnosed with DSM-5 and would lose treatment eligibility. This has resulted in much panic by patients and families affected by these disorders as witnessed by the 10,000 plus e-mails in my box following the NY Times article. I was not willing to give detailed data on the relative rates on DSM-IV and DSM-5 ASD until these data are subjected to peer-review and are published.I’m happy to followup if either of you have any further questions. DarrelDarrel A. Regier, M.D., M.P.H.
Director,Division of Research 
American Psychiatric Association;Vice-Chair, DSM-5 Task Force; & Director, American Psychiatric Institute for Research and Education------------------------------------------From: Volkmar, FredSent: Friday, February 10, 2012 6:42 PMTo: Darrel A. Regier, M.D; Weir, Cc: Carey, Ben;; McPartland, Subject: RE: Darrell Regier's comments The wording is profoundly unfortunate - there are truly different points of view and, as an academic, I'd say we should welcome all of them and then see 'what the data says'. As you well know there are various opinions on these matters. I think we'd be best off having a data based discussion but your comments suggest a bias on my part. I have never attributed any bias to members of the committee (even though some of them are truly authors of instruments that are very involved in this and might benefit from it). Nor have I said anything to denigrate their motivation in dealing with what is probably an underfunded and inadequate process. At any given point in time I'm involved in many projects - at the moment this include a revision of the Asperger's book, the Handbook of Autism, The Encyclopedia of Autism, A book on autism in adolescents and adults – not to mention editing the Journal of autism (of all these only the last pays any real money and that is for a LOT of work). I've truly tried to be helpful in this process and this kind of comment is not helpful to that end it also verges on implying unethical behavior and i find this truly personally offensive. for what it is worth I'm going to complain to the APA about this. It is of course a free country and you can say what you think but given your capacity in saying this as a spokesperson for the APA I am considering resigning from same (as a distinguished fellow or some such) in protest - this will only draw more attention to the issuesadlyI do think there are legit discussions of all this. I'm aware of many different data sets. My preference would be fixing what needs to be fixed and leaving what doesn't. It is unclear to me why there is motivation for a major change in a system than generated about 2000 peer reviewed papers last year. Your comment suggests I have some major financial interest in all of this.... In case you hadn't noticed I'm a tenured professor at Yale, a chairman of a department, holder of an endowed chair, editor of the major journal in the field, and a person who has devoted his life to research and treatment of children on the autism spectrum. Obviously this also means that I am now not inclined to share the multiple other data sets that I'm aware of on the issue so that the process - already somewhat isolated - is even more isolated than before. FredFred R Volkmar, M.D., Irving B. ProfessorDirector - Child Study Center, Yale University School of MedicineChief of Child Psychiatry Yale New Haven Hospital------------------------Once again...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 maintain the following outline without letup: 1. Sign the GRASP 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 . 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@... and to dsm5@...4. Check GRASP's 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. Yours, y'all, CarleySExecutive DirectorGRASPThe Global and Regional Asperger Syndrome Partnership, Inc.666 Broadway, Suite 825New York, NY 10012p + f = 1.www.grasp.orgHelp GRASP make a difference. Donate now by clicking the link below:http://www.nycharities.org/donate/charitydonate.asp?ID=2223