by Michael D. Anestis, M.S.
Few issues in clinical psychology prompt as many varied and strong responses as discussions of autism and autism spectrum disorders (e.g., Asperger's disorder). Individuals argue about potential origins, treatments, assets, and liabilities associated with these symptom patterns and, quite understandably, emotions often drive the course of the discussion. As always, we at PBB are primarily concerned with scientific evidence and how it can help shape our view of mental health topics and better enable us to validly and reliably diagnose and subsequently treat patients in such a manner as to maximize the number of individuals in need receiving the optimal form of treatment. That being said, today I would like to discuss an article written by Claudia Wallis and published in the Health section of the New York Times on potential shifts in the autism diagnostic spectrum in the upcoming DSM-V. In prior DSM-V articles, our focus has been on peer-reviewed journal articles and, as we continue to touch on this topic, that will remain our general focus, but this New York Times article was exceptionally well-written and I find myself compelled to make it the center of today's post.
One of the primary reasons I feel compelled to write about this topic - aside from the fact that I feel these disorders should receive more attention on PBB than they have thus far - is that I so often encounter or read about people whose lives are shaped by autism spectrum disorders and who are wading through a sea of information, much of which is not based upon any scientific evidence. One of the primary sources of concern - increased prevalence - has led many people to fear that there is an autism "epidemic," as though the disorder is occurring in more people now than it was before. The key, however, is that people must differentiate between prevalence and incidence. The former term refers to how often a disorder is diagnosed. The latter term refers to how often it actually occurs. When a diagnosis becomes more widely known, more people seek treatment due to its symptoms and more clinicians assess for its presence (and insurance companies become more likely to pay for its treatment). As such, prevalence is sure to increase, but not because more people actually have the disorder (incidence). Additionally, as was the case with autism spectrum disorders, when milder variants become publicized and added to the diagnostic manual, a greater number of individuals who previously would have fallen beneath the diagnostic threshold are likely to receive diagnoses. Here again, prevalence increases not because more people have symptoms, but because we discover and acknowledge the symptoms in a greater number of people who have them. As such, much of the concern regarding a potential autism epidemic actually reflects an increased number of individuals receiving diagnoses due to a greater amount of publicity and more sensitive diagnostic criteria.
At the core of the New York Times article is one substantial decision that appears to be increasingly likely and which directly impacts the increased prevalence of autism spectrum disorders: the merger of Asperger's disorder and pervasive developmental disorder not otherwise specified (PDD-NOS) into a single diagnosis (click here to read the DSM-IV-TR diagnostic criteria for each of these conditions). As Catherine Lord, director of the Autism and Communication Disorders Centers at the University of Michigan said in the article, "Nobody has been able to show consistent differences between what clinicians diagnose as Asperger's syndrome and what they diagnose as mild autistic disorder." In other words, it appears that Asperger's disorder might not actually be qualitatively different from mild autism and that, by collapsing the diagnoses into a single continuum, we might develop a more accurate conceptualization of the autism spectrum and reduce the confusion caused by situations in which individuals appear to transition from one spectrum diagnosis to another and then back again.
Scientifically speaking, this decision makes a lot of sense, but that does not mean that it is without its potential problems. First of all, people are used to the terminology. Much as people continue to use terms like "ADD" and "sociopath" rather than "ADHD, primarily inattentive type" and "psychopath," the shifting away from the well-known term "Asperger's" is likely to result in confusion regarding terminology, particular amongst clinicians who do not remain up to date on current research and individuals in need of help who are not plugged in to the inner workings of the scientific psychological community.
Another concern, as we mentioned above, is that the inclusion of specific diagnoses at the milder end of the autism spectrum resulted in an increase in individuals being assessed for symptoms and subsequently receiving help. Some individuals are concerned that, by merging the diagnosis with a broader autism spectrum, the result might be that a smaller number of individuals with mild symptoms will be assessed. Personally, I do not buy into this argument, although I understand where it is coming from. The way I see it, the broader spectrum includes Asperger's as well as people with milder and more severe symptoms. If clinicians do not assess for symptoms or individuals in need of help do not seek services, this is not necessarily representative of a problem with the diagnostic framework, but rather a systemic failure indicating that proper procedures are not being followed by practitioners and adequate information is not being provided to those in need. The fear of mistakes should not prevent us from making progress and increasing accuracy. Instead, it should motivate us to address the issues likely to result in those mistakes.
A third concern expressed in the New York Times article is the idea that, whereas most people have a positive or neutral view of Asperger's disorder, the same is not true of autism and, as such, the connotation of the diagnostic terms might inhibit some people from seeking services. Here again, I can see where people are coming from with the argument, but that line of thinking makes me a bit uneasy. It seems that, in maintaining that perspective, we are perpetuating unnecessary and hurtful views of the more severe side of the autism spectrum and, in a sense, making an already difficult situation even harder to manage. The answer is not to deepen the public's divided perception of variants within the autism spectrum, but rather to enlighten them and reduce stigma. In this sense, collapsing the diagnoses into a single spectrum is not only scientifically valid, but also potentially a useful social maneuver that can help alleviate false beliefs about the differences between these conditions.
So far, we have talked entirely about potential problems of the proposed DSM-V shift, but there are many compelling positives likely to stem from this move as well. First of all, as the New York Times article notes, the changes would allow for a shift away from an all-or-nothing, "you have it or you don't" view of autism spectrum disorders and towards a continuous view that recognizes differences in symptom patterns and severity. Secondly, the DSM-V task force is seeking to also include measures of a number of additional health problems frequently associated with autism spectrum disorders but not currently included as DSM symptoms. Along these lines, DSM-V will hopefully include measures of anxiety, attention difficulties, gastrointestinal problems, seizures, and sensory sensitivities (e.g., aversion to loud noises) along with measures of the core autism symptoms. In this sense, the entirety of the disorder will be recognized and, in all likelihood, a substantial increase in research addressing this broader picture will commence.
The New York Times article also notes that, in some states (e.g., Texas and California), only a diagnosis of autism proper results in receiving state services. Individuals diagnosed with Asperger's disorder or PDD-NOS are not eligible there. By recognizing that these disorders lie upon a single continuum rather than representing qualitatively distinct phenomena, the DSM-V would likely enable a larger proportion of those with such symptoms to become eligible for services.
One final point mentioned in the article is worth noting. Autism spectrum disorders look different in different people. In fact, two people who meet criteria for one of these conditions might not appear similar at all. In this sense, as Susan Swedo of NIMH said, "in autism, everybody is a snowflake." Given this variability, the elimination of subtypes might seem counter-intuitive. After all, if people can look so different from one another, shouldn't we be making an effort to systematically understand those differences? The answer, quite clearly, is yes, but the decision to eliminate subtypes at this point is nonetheless a reasonable thought. As of now, none of the genetic variants identified by researchers maps onto the subtypes we have defined and very little statistical evidence supports the discriminant validity of the subtypes whereas substantial evidence contradicts it. Along these lines, until we can develop more valid and reliable subtypes, it makes more sense to eliminate the ones we have rather than perpetuate our beliefs in the wrong subtypes.
None of these decisions are final. I have heard rumors about many of these thoughts for years and, certainly, there is reason to believe that they will come to pass, but nothing has been finalized. Additionally, in January, the work group's final proposal for DSM-V will be posted on the DSM-V website and the public will be invited to submit comments. Obviously, not everybody's voice will be heard, but this will provide people with an opportunity to express their thoughts and to read and contemplate the perspectives of others. Without question, the comment section will be full of emotions and the results should be interesting to see.
All this being said, I would love to hear your thoughts on these proposals. Do you think that merging the Asperger's diagnosis with PDD-NOS will have harmful effects, beneficial effects, or a combination of the two? Do you see a better solution? Is a solution even necessary? I know there are numerous PBB readers with strong backgrounds in this area and I am certain that all readers would benefit from reading your thoughts on this matter, regardless of where you stand on the issues.
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Mike Anestis is a doctoral candidate in the clinical psychology department at Florida State University
