By Emily Willingham
“I use it as a doorstop.” That was the response I got from a psychiatrist when I gestured at his copy of the DSM (Diagnostic and Statistical Manual of Mental Disorders)-TR-IV and asked what he thought about it. If you read news stories about this book and its update, the DSM-5 (they’ve abandoned the Roman numerals), you might think that a clinician keeps at hand a much-used, heavily notated, dogeared version of this tome, the so-called “bible” of psychiatry. But from what I can see, the general inclination regarding this particular bible is apostasy.
And for good reason. By the time the DSM version du decade appears, its assumptions and conclusions are often passé, and if they haven’t been ground into dust by biological and medical sciences by publication, give it a few years. Anyone remember when this “bible,” like another book with that name, said that homosexuality was abnormal?
Even in the absence of debunking from basic science, the DSM can tilt the earth under its own characterizations of disorders. Possibly no other example of this ever-shifting diagnostic ground has led to more controversy than the upcoming version’s treatment of autism. As the parent of an autistic child and as a scientist who’s been writing about autism for almost exactly 8 years, I’ve watched these controversies closely. My top take-home message is quite similar to the one the psychiatrist I quote above sent. In fact, I currently do use my copy of the DSM-IV-TR as … a doorstop.
In spite of my inclination to dismissiveness, however, the DSM also carries weight because it’s one benchmark people use, diagnostically and in research, to identify and characterize autism. The just-mothballed version (IV) split autism diagnoses into categories of autistic disorder, Asperger’s, and the ever-muddled PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified). The new version, the DSM-5, groups all autism into one category but sort of grandfathers in the previous categories. With the new version, for evaluating autism as a diagnosis, clinicians are expected to consider two domains of behavior— (1) social communication/interaction difficulties and (2) restricted/repetitive behaviors and interests—and rank them on severity scales. The idea is to create a snapshot of a person’s place on an autism spectrum and thus that individual’s level of “severity” and need for support.
Also for this new version of the DSM is a category of “social communication disorder.” Note above that “social communication/interaction difficulties” constitutes one of the behavioral domains for an autism diagnosis. Presumably, if a person presents with problems in this domain but without manifesting symptoms in the restricted behaviors domain, the intention is for that individual to be shunted into the social communication disorder category. Problem is, it’s one that no entity currently providing services—or paying for them—recognizes.
The controversies around these decisions reside in two domains themselves. One is the social area—how will these changes affect people, their diagnoses, and the services they’re considered eligible to receive? The other domain is the arena of research. Subsuming autism stratifications into an umbrella diagnosis will, as Lai et al. point out in their recently published PLoS Biology paper, compromise the biological reality of autism and elide the very real differences among autism subsets. This blending of categories would, they argue, interfere with researchers’ abilities to tease out the various features of these different “autisms,” confounding efforts to characterize them and, ultimately, I’d say, to target interventions for these specific subsets.
Lai et al. take on the research aspects of this problem effectively and emphasize that better methods of characterization are possible. They discuss the concept of a continuum of characteristics of autism, noting that autism traits tend to exist in a normal distribution that can encompass the general population. Determining an individual’s location on the distribution for each characteristic would likely be useful both clinically, in terms of individualized medicine, and for research, in terms of grouping autism population subsets.
While Lai and colleagues, including senior author Simon Baron-Cohen, mention the effects of the assumed DSM-5 criteria on who might or might not receive a diagnosis, their primary concern in their commentary is how these new criteria will influence research. Here, I’ll leave that to them and focus on the other domain of controversy in autism and the DSM-5: the social repercussions.
A crystal ball is not to hand, so I can’t say with any certitude how these changes will ultimately affect who is and who is not diagnosed with autism and who will and who will not receive services. All I can do is refer to the existing studies addressing these very questions in the context of these criteria. I’ve expanded on a couple of these reports at length elsewhere, as have others with an interest in the subject. The short version is that studies overall indicate that at the least, 10% of people who would currently have an autism diagnosis under the DSM-IV-TR criteria would lose that diagnosis under the DSM-5, and some studies go as high as 55% in their estimates.
Even more troubling? The committee’s stated intention, as I noted here, is that those who now miss the diagnosis under DSM-5 would instead fall under the social communication disorder category. The problem with that is twofold. First, this diagnosis doesn’t exist and isn’t recognized as a disorder by the entities parents care about most: educational institutions and insurance companies. Will they begin to do so? That’s where the crystal ball would be handy.
Second, what we do know is that in a study led by DSM-5 architect Catherine Lord, children with PDD-NOS, as expected, were those most likely not to meet the new autism criteria, so presumably they are the population the social communication disorder category is expected to capture. Except that in that study, the children who failed to meet the DSM-5 autism criteria did so because they did not have dysfunction in the social domain although they did in the repetitive behavior domain. As the authors of Heurta et al. write: “Most children who did not meet the criteria did so because they did not demonstrate the required impairments in social and communication functioning, and not because they did not meet the restricted and repetitive behavior criteria. In fact, few children did not meet the restricted and repetitive behavior requirement in DSM-5.” If they lack these social deficits, how will a social communication disorder category capture them? If they fall between these two stools, thanks to the DSM-5, they’re unlikely to receive services for the deficits they do have in the other domain.
And that’s the biggest concern … not that children won’t be recognized as having deficits. Not that clinicians won’t, like the psychiatrist I quoted in the opening, shuttle the DSM to the side and use other measures, such as ADI-R and ADOS, to evaluate for autism. It’s that the entities responsible for providing the support—schools, insurance companies—won’t recognize the child as having the deficit if autism isn’t the name they carry.
An experienced clinician will know quite well how to go beyond the limitations of whatever DSM version is to-hand (or holding open a door) and recognize and diagnose autism when they see it. How much diagnostic rates will really change remains a matter for the crystal ball. In my mind, Lai et al.’s proposal of evaluating an individual’s location on a continuum for various traits and, as they call them, specifiers, will probably yield both the best clinical and social intervention basis for autism and the best research population stratification.
That said, in the end, all of these traits lead to what we do call, in the aggregate, the autism spectrum. And the new DSM view of autism as a catch-all for the entire spectrum has one positive purpose in the eyes of some autistic people I know: It unifies the commonalities they share und
er a label that they hold as an identity. That’s one beneficial social aspect of this change, and the one thing that might, when it comes to autism, elevate the DSM-5 above the level of doorstop.
Willingham, E. (2013). Autism and the dsm-5: Doorstop or diagnostic tool?. Forbes: Pharma and Health , Retrieved from http://www.forbes.com/sites/emilywillingham/2013/06/20/autism-and-the-dsm-5-doorstop-or-diagnostic-tool/