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Understanding the Spectrum of Dysfunction with the DSM-5:
A Report to GRASP’s members
By Michael John Carley
On June 19, 2012, GRASP had a chance to talk with the Autism Spectrum Disorder (ASD) Workgroup of the proposed fifth edition of the Diagnostic and Statistical Manual (DSM-5). Higher-ranking Committee members present when we called in were Dr. Darrel Regier, Dr. David Kupfer, and Dr. Susan Swedo.
Other ASD Workgroup Committee members who were present (but did not speak on the call) were Walter Kaufmann, Bryan King, Francesca Happé, Sally Rogers, Sarah Spence, Amy Wetherby, Harry Wright, James Harris, Gillian Baird, Rosemary Tannock (liaison from the ADHD and Disruptive Behavior Disorders Work Group), and Audrey Thurm (advisor to the Neurodevelopmental Disorders Work Group). Also present but not speaking was ASAN’s Ari Ne’eman.
NOTE: The following is a combined report on the phone call, and the summary of events thus far at the six-month period since this debate started.
The meeting went as expected. Our concerns were raised, and invalidated; and to be fair, their assurances were somewhat rebuffed.
As a non-research organization, GRASP has always taken the stance that we have no way of knowing whose studies are accurate and whose aren’t. Our calls for change are not out of an ability to say that the Yale study, the LSU study, the recent Australian study…etc. is more accurate than the field trials conducted by the Committee. (I certainly know which side we’d lay money on, but) The very fact that the Committee’s revisions have encountered so much intellectual opposition, have been caught up in clearly personal feuding, and that the Committee has been accused—by notable professionals—of having demonstrated poor work habits . . . all this calls for an independent review of their work.
Outside of being able to say they met with us and listened to us, I didn’t pick up any other motive on their part for the meeting. They are going ahead.
With the exception of occasional dismissals or interruptions by Dr. Swedo, the meeting was primarily cordial. Such singling out of Dr. Swedo aside, however, Swedo appeared more angry than disrespectful in her dismissal of us. She is still furious at Dr. Volkmar, and to her credit, admitted so. Our suggestion that perhaps her anger was influencing her decision-making, or that letting someone else—someone who didn’t feel unfairly criticized (she is not unaffected by all that has happened) as she, make the decisions regarding whether to push these changes through, or rethink them . . . this suggestion was not answered.
Regier and Kupfer were polite, but unbending. More than once Regier proudly spoke of how this was the first time the DSM Committee was taking feedback from the public. Growing somewhat frustrated, we had to confess after the second telling that we needed to trust that the feedback was actually being considered, if we were to give his process the high marks that he would like us to give it.
But the most damaging epiphany from the call was in confirming our suspicions that the Committee will not own up to any mistakes either in their procedures, proposed changes, or media statements. An admittedly interpretive conclusion is also that the Committee refuses to acknowledge that the trust they once enjoyed has been damaged. According to them, we are to take them at their word.
Background on the Call
Since Committee members’ comments in the media had indicated no willingness to bend on the issues that concerned us, we originally attempted to secure a meeting with the American Psychiatric Association’s Trustees (publishers of the DSM), thus going over the ASD subgroup’s heads. The Trustees, we thought, would be more concerned about the damage in reputation to the book (and its sales) and to the greater faith in the clinical community caused by this issue. However, Dr. James Scully referred us back to the Autism Spectrum Workgroup Committee and a meeting was eventually scheduled.
Our strategy going into the call was not to go over the controversial points, but rather to cite that our demands were in everyone’s best interests, including theirs, as
1) An independent scientific review of the proposed changes, and
2) A risk/benefit analysis of the impact the proposed changes’ impact on clinical services
. . . would settle the disputes that some of the most prestigious academic names are bitterly engaged in. Note too, that we demanded that those in charge of these two assessments needed, unlike the present Committee to a) have experience with both adults and children, b) experience with all ends of the spectrum, and c) more experience with direct clinical experience (the Committee is predominant if not entirely academics). Early in the call, Swedo cut us off as we cited these latter areas of our demands, stating the Committee had plenty of experience in all these areas and that this portion of the conversation was finished.
This segued into their contrary aim of rebutting the contentious issues, and so these points of arguments were indeed discussed, despite our plans otherwise.
Background on the Story
On January 19 of this year, a story broke in the New York Times indicating that up to 40% of children and adults with autism, Asperger’s Syndrome (AS) and Pervasive Developmental Disorder—Not Otherwise Specified (PDD-NOS) might lose an autism spectrum diagnosis altogether under the diagnostic criteria proposed for the DSM-5. If verified, this would mean the loss of many services to adults and the right to an appropriate education for many children.
DSM-5 Committee members immediately took to the airwaves to dispute the findings of the Times article, as well as the study the article cited.
The actual amounts over how many people will be left out of an Autism Spectrum Disorder (ASD) diagnosis (the DSM-5’s proposed merger of three spectrum labels: autism, Asperger’s Syndrome, and PDD-NOS) is obviously in debate. However, if the damage is only 20%—half the 40% reported by the article citing the original Yale study—then this would still be diagnoses lost to over 700,000 people of all ages.
The issue could have remained as an emotionally-charged intellectual disagreement over the validity of these reductions in diagnostic criteria. Clinicians and academics could have argued it with logic and ironed things out behind closed doors; the same way most prior DSM editions were created. But it spiraled into something worse; thanks mostly to the DSM-5 Committee’s poorly conducted damage control over these revelations; and consequentially, the justifiable public fears.
“The APA Trustees are face to face with a chilling but unavoidable moment of truth. The May 2013 publication date appears to be completely unrealistic unless we are to settle for a DSM-5 so poorly done that its reliabilities will return us to the dark ages of DSM II. DSM-5 is in a very deep h*** with very few remaining options . . . The work on DSM-5 went off track because of unrealizable ambitions; a closed and secretive process; and insufficient attention to the day to day details of prudent planning, efficient organization, and careful writing. Because of its poor performance on DSM-5, (the) APA has probably forfeited its right to sole control of future revisions.”
—Dr. Allen Frances, the lead architect of the DSM-IV, Psychiatric Times
The Yale Study
The January 19 Times article drew from research conducted by Yale’s Drs. James McPartland, Brian Reichow, and the well-known Fred Volkmar, in which these investigators used the data collected for DSM-IV (back in 1994) to look at the new criteria. Their results showed that large numbers of those currently qualifying for any ASD under DSM-IV would not qualify under DSM-5. While Volkmar himself admitted his numbers might be slightly off, Committee members countered bitterly that his numbers were far more than “a little” off.
Shortly thereafter, GRASP obtained a copy of a similar study, headed for publication, conducted by Dr. John Matson and Dr. Julie Worley of Louisiana State University (LSU). The Matson/Worley study concluded that 32.3% would lose their diagnosis; numbers that at least corroborated the seriousness of The Yale study’s findings. Further studies, including a very recent one from Australia, corroborate similar numbers.
At the time, though, what the Matson/Worley study also corroborated with the Yale study was that it wasn’t just the higher end of the spectrum that could lose their diagnosis. According to both studies, significant numbers of those diagnosed with classic autism would also be denied an ASD classification, thus counteracting the myth that the new criteria targeted only those on the spectrum who are better able to mirror greater society.
But though DSM-5 Committee members continued to try and discredit the Yale study—in particular, Dr. Volkmar—in various, subsequent media appearances, they did not criticize the Matson/Worley study, or other studies at anywhere near a similar level. Why?
Dr. Fred Volkmar had resigned from the DSM-5 Committee some time ago. Given the Committee’s anger over Volkmar’s arguable role as a whistleblower to the DSM-5’s true intentions (as interpreted from the NYTimes piece), or that at the least their breakup was not as amicable as had been presented at the time, the ongoing animosity illustrated at least the appearance that negative feelings lingered over Volkmar’s departure. Backing up the cat-fight, soap-opera assumptions that much of this was personal, the head of the DSM-5 Committee, Dr. Darrel A. Regier, was astoundingly caught in an email exchange (forwarded to GRASP) in early February wherein he tried to convince a Hartford Courant reporter that Volkmar’s resignation from the Committee originated in financial interest because the DSM-5 changes might cost Volkmar some book sales (which all have “Asperger’s” in the titles).
Arguments for the Changes
Volkmar’s study, coupled with the Times’ coverage clearly put the Committee on the defensive. Yet while one Committee member, Dr. Bryan H. King, attempted to reassure everyone through a Medscape article that there was nothing to worry about, other committee members, in other media outlets, were contradicting King, and admitting their feelings that there were too many people diagnosed with ASDs who didn’t deserve them. Though clearly not coordinating their media responses with one another, they all defended the proposed changes, citing:
Questions surrounding all three of these concerns are vast.
1. Re: Over-Diagnosis
Speculating that the DSM-IV's broadening of the criteria caused an over-diagnosis problem has, according to much of the clinical world, been purely that: speculative, a notion that, as many clinicians have noted, is just as equally speculative as the idea that these conditions are actually under-diagnosed (as in how our understanding of spectrum conditions in women is still in its infancy, and by citing the many economically-challenged communities that have yet to receive proper evaluations).
Most everyone agrees that there are some cases where an inaccurate ASD diagnosis has been placed, especially in the case of an inadequate diagnostician reading a good guide (the DSM-IV). This is not, however, an indication that the DSM-IV itself is flawed. And even if the DSM-5 is solid, there will always be inadequate diagnosticians who don’t accurately read the criteria.
What has also confused many in the clinical community is that if the Committee really was so concerned about scientific integrity, then why would it make sense to impose such drastic changes to the DSM-5 based on a hypothesis (over-diagnosis) that has yet to be proven?
2. Re: The DSM-IV as not Scientific Enough
This actually may be the case, according to most, but most clinicians would also agree that there’s only so much certainty one can expect from the autism spectrum. Many clinicians who work with adults report that abilities to mask symptomology, or to navigate greater society, develop over time, albeit in varying degrees based on the individual. And the ability to hide the autistic behaviors often prevents the real “scientific” evidence from showing itself.
But more importantly, ASD is not a diagnosis that you get from a blood test or an MRI—no matter where on the spectrum you might be, or how old you are. It is subjectively rooted in the interpretable observation, or second-hand narration of present and/or past behaviors.
3. Re: Cost
Of the three justifications cited for the revisions, this one has made the least sense, and originally aroused suspicion as to Committee members’ motives. GRASP has no reason to assume there are conflicts of interest amongst the Committee members, but Dr. Swedo seems under the belief that IS the suspicion of them. Here too, she forcibly interrupted us in the call about there being no conflict of interest amongst Committee members . . . despite the fact that we weren’t going to insinuate anything whatsoever. We were merely hoping to discuss whether cost was a legitimate issue.
The Committee is backing away from earlier comments about cost, probably out of the aforementioned fear of an appearance of a conflict, as well as the fact that the Committee likely sees that their comments about cost in the media couldn’t have been more ill-conceived. But the Committee has to recognize—and in our phone call they did not—that they did indeed make them. So it remains an issue still.
• On the higher end of the spectrum are individuals (like myself) who do not cost a thing due to no need for services or medication. Yet for us, the diagnosis is an absolute must for real self-esteem lest we go back to the days when behavioral differences were thought of as character deficits rather than (for lack of a better word) wiring. Should the changes go through, this segment will need more therapy and possible services, not less.
• The big picture of what happens to an individual—anywhere on the spectrum—when they do not enjoy a childhood and adolescence that is socially productive and educationally-appropriate, is grim. Instead of becoming employable, productive citizens, many will be infinitely more at risk of becoming homeless or incarcerated. To cite cost-effectiveness in reducing those who would qualify for ASD doesn’t make sense.
• The valid or invalid distrust in Committee members’ intentions arises from the fact that the DSM has traditionally been about achieving the best definitions of emotional and mental health. Cost was never a concern before. So why did they make those comments?
The DSM-5 Field Trials
The Committee has spent time on their media appearances reassuring us that their field trials show no reduction in diagnosable prevalence.
The trials’ supporting the Committee’s views (that no one will lose their diagnosis) faces us with the inevitable “my study’s better than your study” type of battle (similar to “he said/she said”) that never fails to anger or alienate those of us who cannot discern the truth by reading studies, especially when both sides’ advocates carry deep professional credentials. Volkmar, Matson and Worley are respected—This isn’t Andrew Wakefield (the architect of “vaccines cause autism” beliefs) the Committee has been going after.
But whatever the results, at least one of the DSM-5 Committee’s field trials may be questioned for two reasons.
1. Not out of protest, but instead because the DSM-5 field trial training process was so demanding, only 70 of the 5000 clinicians selected were conducting trials in December, 2011. Therefore, as each clinician is required to use two patients for analysis, roughly 150 patient participants will be engaged, and most researchers agree that this is a woefully insufficient number to justify such immense diagnostic change.
2. In order to participate in this trial, you have to be seeing a therapist. But as there are plenty of people on the higher end of the spectrum who do not need to see a therapist, this takes out a significant sub-group of the ASD, thus altering the data and steering the study more towards findings that erroneously indicate less people will lose spectrum diagnoses.
A scathing critique published in the Journal of Nervous and Mental Disease (rotten title for a journal) skewered the remaining trials. The Committee’s response to Dr. K. Dayle Jones’ article, when we asked about it over the phone, was “We were surprised it was published,” insinuating that Jones’ article was shabbily researched. The summation of the article read as follows:
“The trials experienced problems early on—they were poorly planned, started late, used the wrong testing sites, were disorganized in administration, constantly missed deadlines, did not evaluate validity, did not evaluate prevalence rate changes, had an extremely high attrition rate in the routine trials, and may well have unacceptably low reliabilities. Furthermore, an essential component of the reliability field trial (i.e., the second phase for retesting criteria set changes) and the only validity component were cancelled because of the delays and postponements.”
In the wake of the wrestling match amongst scientists, people from all beliefs in this argument have called upon the APA to create an independent scientific review of the new criteria, and/or an independent Risk/Benefit Analysis on the impact of services. Both have been refused (the Committee’s comment to us was, “The trials were independent”).
Frances concurs in another article:
“DSM-5 reported embarrassingly poor field trial results at this year's meeting, yet it still plans to go ahead with its May 2013 publication. This violates the original DSM-5 plan (and promise) to rewrite the poorly drafted criteria sets and then to retest them to ensure that they were acceptable. As it stands, DSM-5 not only lacks credibility itself but also will tarnish the credibility of our entire field. The only possible motivation for this shortsighted decision is that APA is choosing publishing profits over public trust.”
“Social Communication Disorder”
An apologist-sounding antidote for those who might lose their diagnosis, the Committee has proposed this new condition for use, according to them, strictly with those diagnosed PDD-NOS who in their evaluations were observed as having social difficulties only. If true, this would be of relative relief to the autism/Asperger world as PDD-NOS is a diagnosis that has been used consistently less and less as time has gone by. But there are no services or protections possible with such a diagnosis, and not only will this negatively effect a number of people, however small the number, it begs the question of why they would insert this and simultaneously state that few (or, according to King in Medscape, none) will lose their spectrum diagnosis?
Why a “5” instead of a “V”?
The Committee plans to release updates to this edition of the DSM, such as “5.1” and then “5.2” and so on. While one could argue that the DSM changing from the Roman numerical system to our standard (Arabic) system will accommodate tweaking (once the changes are in practice) and thereby shows a future flexibility, it is equally arguable that this change illustrates exactly how much the Committee knows that this book will be flawed. Shelving the DSM-5 until they get it right will cause infinitely less turmoil. This matter was not discussed in the call.
The Loss of Trust, or the Committee’s Meltdown
In differing media appearances, three Committee members have been quoted as stating contradictory information about how much we should be worrying (1); the venom aimed at Volkmar has at the least been unprofessional; King’s Medscape quotes appear disingenuous at a minimum, as the article seemed tailor-written with no contrary view expressed; and four days after the story broke, Committee member Dr. Catherine Lord, in a CBS morning news segment, stated that 10%-20% of those diagnosed with autism, “outgrow” it. This statement by Lord both scientifically and contextually floored the vast majority of us who work in this field as clinicians or otherwise, as it runs counter to so much of what we’ve learned about the spectrum over the last fifteen years.
Proposed changes to ASDs are also not the only controversy surrounding the DSM-5. A recent TIME article revealed that the Committee is proposing to classify normal grief (over, say, the death of a loved one) under a larger category of Depression, which would have likely increased anti-depressant prescriptions, as well classify as “abnormal” what has been previously thought to be a very natural part of grieving.
Fears do swirl about the DSM-5 Committee members being under the influence of insurance companies, government budgets, their trademarked measuring instruments (that would only work under the DSM-5), and those increased sales for anti-depressants as per the grief = depression conclusion. Baseless conspiracy theories or not, questions like these arise when inexplicable decision-making benefits others financially, and someday, an investigation into the Committee members’ financial interests seems likely.
As much as we may wish to revel in the downfall of clinicians who have invalidated our concerns, we shouldn’t ever think that such chaos benefits GRASP, its members, or the entire autism/Asperger world. We need a scientific hierarchy that we can trust lest we go back to the emotionally-dysfunctional “Why do you want to put a label on him?”-days.
What is perhaps most tragic about all of this is the insinuation that the DSM-IV was a failure. On the contrary, the DSM-IV began the process of repairing decades, if not centuries of misinterpretation that has led to overall happiness in people’s lives that can never be measured. It has allowed us to understand so much more about each other that even those without any DSM classifications are more content in their lives, because they do not fear the unknown differences of others as much as they used to. We are a more behaviorally pluralistic society because of the DSM-IV, without which movements such as anti-bullying campaigns would have never commenced. The DSM-IV, despite whatever flaws it may have, seemed created as it should have been: Through a concern for our emotional and mental well-being, inspired by knowledge, and not by unproven supposition or financial concerns.
The Committee members themselves have outstanding resumes and accomplishments. But as a collective, it was a terribly-formed Committee. The entire spectrum was poorly represented in their credentials (sorry, Dr. Swedo, but we don’t see the parity you see); resumes that show a large experience gap in working with both adults, those on the spectrum who are more able, and in current clinical practice and so their knowledge of the impact on services reads as very theoretical. Furthermore, they allegedly communicated terribly with each other, they definitely communicated terribly with the public, experts like Frances and Jones state they are far behind on their work, and that with all that, they are looking to push through a potentially-disastrous edition of the DSM.
Luckily, the clinical world will have other options available to them for diagnosis, and it is highly likely that many will abandon the DSM in favor of independent measurements such as the Gilberg & Gilberg criteria or the International Classifications of Diseases (ICD). GRASP, if necessary, will push for such an abandonment of the DSM, and make this a staple of our overall message.
Our next step is to again try and meet with the Trustees.
Considering that (conservative estimate of) $100 million in sales each DSM edition brings to the APA, maybe they will think a little harder when selecting a Committee for the DSM-6 . . . that is, if this fifth edition doesn’t finish off the DSM, or the APA, entirely.
Michael John Carley is the Executive Director of both GRASP and ASTEP. He is also the author of “Asperger’s From the Inside-Out” (Penguin/Perigee), and he has finished a second book, “The Last Memoir of Asperger’s Syndrome.” He and his then-four year-old son were diagnosed with Asperger’s Syndrome in 2000.
Committee member Kupfer’s comments and tone differ between his and Regier’s email response to consumers (as listed in the above link) and through his comments in another NYTimes article at http://www.nytimes.com/2012/01/21/us/as-specialists-debate-autism-s... and Committee member Lord, in several media appearances early on was echoing King’s “no worries” mantra, but has since owned up to many losing their diagnosis as in a Boston radio interview at http://radioboston.wbur.org/2012/02/07/narrowing-autism-spectrum
Thank you! We now have over 7,200 signatures to the GRASP Petition!
If you haven't yet signed, and 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, and (even if you have signed) maintain the following outline without letup:
1. Sign the 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. 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.