Although the DSM-5 was published less than a month ago, it has already been the subject of a staggering amount of commentary. For those unfamiliar with the DSM-5, it was constructed by The American Psychiatric Association and its full title is Diagnostic and Statistical Manual of Mental Disorders – Fifth Edition. It provides a list of every “official” mental health disorder and a set of criteria for their diagnosis. The 5th edition comprises the first full set of revisions since 1994 and includes some radically different conceptualizations of mental disorders from those presented in the DSM IV. It’s an enormous (945 pages), expensive (I bought a discounted softcover from Barnes and Noble for a mere $136), controversial manual that will take those us a long time to digest. For the past 3 years, however, I’ve been focusing on the wholesale changes that were proposed and now adopted to the diagnoses along the Autism Spectrum.
Prior to the publication of the DSM-5, disorders on the Autism Spectrum were placed in the category of Pervasive Developmental Disorders. That category, along with the individual diagnoses that comprised it – Asperger’s Disorder, Autistic Disorder, Pervasive Developmental Disorder – Not Otherwise Specified, Childhood Disintegrative Disorder, and Rett’s Syndrome – have been eliminated. The new manual replaces all those with one diagnosis – Autism Spectrum Disorder – which can be modified with varying degrees of severity and “specifiers.” The APA’s rationale for this change centers on research that shows that the old model was useful for distinguishing those people on the spectrum from those who were not on the spectrum but that it was less effective at distinguishing one specific disorder on the spectrum from another. They found that clinicians were using the various diagnoses interchangeably, which lends credibility to their statements about the overlap and repetition among those different conditions.
The varying reactions to the changes made to the Autism Spectrum have depended largely upon the station of the person doing the reacting and, to a large extent, how they answer the question “Why diagnose?” To that end, many researchers and psychiatrists seem largely in favor of the new version of Autism. The scientific community had good reason to be frustrated with the DSM IV. Establishing reliability and validity in research became difficult, if not impossible, when the established boundaries between disorders were as fluid as they were. For instance, if a researcher were interested in learning more about any possible differences in – say – gross motor control between adolescents with Asperger’s Disorder on one hand and adolescents with PDD-NOS on the other hand, the prospects for reaching any meaningful conclusions are limited if the clinicians who did the evaluating are used what amounted to different sets of diagnostic criteria from one client to another.
Reactions to the proposals were considerably more varied among people on the Autism Spectrum and among members of the Autism advocacy community. There were those who felt that it would be a good thing to break down boundaries and barriers that were probably artificial in the first place. They felt that having one diagnosis – Autism Spectrum Disorder – rather than 5 would be a step towards bringing the Autism community closer together. On the other hand, some felt that lumping high functioning individuals with Asperger’s Disorder together with people with much more debilitating forms of Autistic Disorder, for example, would be unnecessarily stigmatizing. They worried that the changes would serve no purpose other than to further pigeon-hole a segment of society that had already received more than its fair share. Noted Autism author, Steven Shore, once wrote “If you’ve met one person with Autism, you’ve met one person with Autism” and the community’s widely disparate points of view on this issue attests to the individuality he was describing.
Of all the constituencies with a stake in this issue, the group of people most consistently opposed to the APA’s proposals seem to be clinicians whose work focuses on people on the spectrum. As a member of that group myself, my point of view lines up closely with that of many of my colleagues.
Although this may seem a digression, I’d like to share my experience with this issue as a way of illustrating how I came to think the way I do. Through a strange combination of events, I found myself in April, 2010 digging vigorously into this topic. I sent comments to the APA, wrote an Op-Ed for a local paper, and was asked by The Asperger’s Association of New England, one of my favorite organizations, to lead a discussion at their Fall conference on this topic. In preparing for the conference, I made a point to speak to other clinicians in order to hear what they had to say on the issue. In all the discussions I had, I made a point to ask “What’s the difference between Asperger’s Disorder and Autistic Disorder?” As the researchers and psychiatrists might have predicted, I got some pretty varied answers. However, taken together, the answers formed a collective vision of these diagnoses that I thought contained a good deal of validity and consistency.
As I was putting my thoughts together for the conference, I also took a look through the files I had on all my clients whose diagnosis fell along the spectrum. I asked myself whether or not the people with Asperger’s Disorder couldn’t have just as easily or accurately been diagnosed with PDD-NOS or some other similar disorder, or vice versa. For many, the answer was a definitive “yes,” bearing out the idea that the DSM IV model had some serious flaws and overlap from one disorder to another. On the other hand, there were some kids I worked with who had been diagnosed with Asperger’s Disorder, who were unquestionably “Aspie.” No other diagnosis described them nearly as accurately. Other clinicians I spoke to made similar observations about their clients. While I can put my finger on some of the reasons for my own conclusions, I was reminded of the comments made by Supreme Court Justice Potter Stewart in his opinion on the landmark 1964 case (Jacobellis v. Ohio) on obscenity. Justice Stewart wrote:
Supreme Court Justice Potter Stewart
“I shall not today attempt further to define the kinds of material I understand to be embraced within that shorthand description and perhaps I could never succeed in intelligibly doing so. But I know it when I see it….”
One clinician I spoke to pointed out the irony of APA committee members complaining about the reliability and validity of a document written by their own organization. In fact, The DSM IV listed a total of 12 possible criteria for Asperger’s Disorder and 15 for Autistic Disorder. Of those, 8 were identical from one disorder to another. Other criteria were so similar in language that their differences were really no more than semantic. Given those similarities, is it surprising that they came to be used interchangeably? By instituting wholesale changes to this diagnostic class in the DSM-5, The APA is, in effect, pulling the rug out from under those who had done little besides making the best of the imperfect system – a system devised by the same organization now tearing it down. By chucking that system, they have thrown out the baby with the bathwater. It would have been a realistic and much more helpful endeavor for the APA to have focused on making improvements to the old system rather than reinventing the wheel as they did.
As I mentioned earlier, one’s feelings about this issue often come down to how one answers the question “Why diagnose?” There are plenty of good answers – improving research, insurance billing, case conceptualization to name a few – come to mind. By far the most important reason to diagnose, however, is to help people make their lives better. To that end, the DSM IV system, warts and all, worked well. The diagnoses along the Autism Spectrum enabled a group of people to move beyond viewing themselves as misfits or as just strange. It gave them a lens through which they could take a more systematic view of their strengths and weaknesses. In many cases, it also gave them a path forward towards furthering their strengths and mitigating their weaknesses. It helped to create a climate in which a group of people who are often characterized by the difficulty they have in coming together and forming a community were able to do just that. That’s nothing to sneeze at – questionable validity and all.
After picking up the DSM-5 this week and giving it a good once over, my feelings are a bit more tempered than they were before. The Autism Spectrum Disorder criteria and narrative seems to afford us more flexibility and specificity than I had anticipated it would. Despite my lingering misgivings about the new system, I am optimistic that we will all make it work somehow. The APA, despite its well-earned reputation for arrogance and political self-advancement, deserves some credit for working to improve reliability and validity. In the end, most of us can only heave a sigh and get with the new program. The National Institutes of Mental Health is working on a new diagnostic system that aims to “incorporate genetics, imaging, cognitive science, and other levels of information” and noted Autism author Temple Grandin urges us – with tongue planted firmly in cheek – to make accurate diagnoses by taking people and “throwing ’em in the scanner.” In the future, it may be plausible that diagnoses will be made more frequently through the use of technology and “hard science.” In 2013, most of us don’t have access to PET Scan machines or genetic labs and still rely on a system that makes inferences through behavioral observations and cognitive testing. For now, we’re going to have to suck it up and, as best as we can, embrace the DSM-5. At least until The APA pulls the rug out from under all of us again.