I, like many of you with children or family members (or with diagnosis) of Autism have been closely following the goings on with the changes in the DSM that are leaving out a huge number of the population that desperately need interventions and services from the government and from our schools in, what I think, is a sneaky, underhanded way of saving money, while sacrificing the well being and desperate needs of the HFA community. It seems a very ignorant strategy to try to quantify how deserving of help some are not by rating what they could be capable of with intervention, of what accommodations people need to level their playing field; but to push back under the rug the challenges in communication, emotional well being and social acceptance HFA individuals face each and every day. If it’s true, as esteemed Dr. Volkmar has speculated, that 40% of those diagnosed with autism will lose their diagnosis with the DSM5, our society is about to take a giant leap backwards and I shudder to think of what the consequence will be. To those who aren’t affected by autism, I only hope that the word will be getting out about what this all means. We need to educate as many as possible. Where are the $$ spent for autism advocacy, given to large organizations such as Autism Speaks, etc. that should be buying up airtime on TV, radio, etc. to explain what’s going on? We need back-up, now more than ever.
It’s deplorable to me that Dr. Volkmar is under attack for speaking out. I have some personal dealings with Dr. Volkmar, as my son participated in some of his studies, as well as the other fabulous clinicians and doctors at Yale Child Study Center.
In any case, here is my attempt to try to help “get the word out.”
The Following is from GRASP Executive Director, Michael John Carley, who has summarized the problems with the DSM5 Diagnosis change and its effect on the upper spectrum population so eloquently. It is only the latest message and I will attempt to post more from GRASP, a vital and important presence in the spectrum community.
Those of you who have been following this issue since it broke just over a month ago know that two studies; one by Yale’s Fred Volkmar, and one by LSU’s Johnny Matson and Julie Worley state that between 32-40% of people who current qualify for a diagnosis under the DSM-IV, will lose their diagnosis—and with it all services or educational funding—under the proposed changes to the DSM-5 criteria for the reclassified Autism Spectrum Disorder. The Committee’s personal and professional attacks on Volkmar’s study (but not Matson/Worley’s) have usually been backed up with boastful statements akin to “Wait until our field trials come out,” indicating their belief that these trials will show evidence that not so many will lose their diagnosis.
Through their admissions that the financial cost of so many diagnosed is a problem that has to be rectified (for just one example, see Committee member Kupfer’s remarks in the NYTimes) it seems plain that no matter what these field trials show, the Committee knows full well those who qualify will be dramatically reduced.
But now there appears to be significant problems with the field trials, whose results are due to be announced soon. Relatively no one wanted to participate.
The attached flyer was issued to the 5000 clinicians that the Committee had long ago selected as potential participants. But judging by the bottom section of the flyer, by just two months ago the trials only had 70 clinicians fully engaged. Granted, the DSM-5 Committee could not have expected all 5000 to sign up and participate, but only 70 participants is eons off of what they could have hoped for, and it will call into question whatever results the field trials summon.
Though the majority of the clinical world that GRASP is aware of detest the proposed changes, and do not believe the Committee has acted in good faith, or practice, the lack of participation does not seem to be out of protest. Rather, the Committee has made the act of participating such a burden to clinicians, that most have said “no thanks” to this unpaid, volunteer activity. As one of the 70 participants told GRASP:
“The reason the field trials were 50 times more successful at recruiting participants than at training them and getting them to complete the study is most likely that the training and the trial were too time-consuming for the average clinician to fit into his or her professional life. The training took many hours, including a webinar held late into the evening, and once it was completed, clinicians had to make their own computers available to patients and devote at least one office hour to administering the tests and conducting the interviews. They might also have been put off by the request that one of the two subjects be a new patient. Administering an extensive diagnostic test to a someone with whom you haven’t established a therapeutic alliance may be standard procedure in university medical centers, but it is not the way most therapists go about getting started.”
Needless to say, 150 or so field subjects, should the findings contest the Volkmar and Matson/Worley studies . . . will be thought of as woefully insufficient to justify the revisions.
Michael John Carley
The Global and Regional Asperger Syndrome Partnership, Inc.