There has been much discussion recently about the anticipated release of DSM-V and how it will impact the diagnosing of autism spectrum disorder (ASD). I was especially interested in the discussion that came about from two Op-Ed pieces recently published by the NY times. My wife often criticizes me for playing “devil’s advocate” in debates (which I usually lose when the “debate” is actually with my wife), so it is not surprising that I feel compelled to chime in on the discussion surrounding our current diagnostic criteria for ASD.
Both of the Op-Ed pieces I mentioned above imply that we are currently over-diagnosing Asperger’s Disorder and other forms of “high functioning” autism. Nugent eloquently argues in his article that because DSM-IV states that Asperger’s is “a continuous and lifelong disorder”, and that since he was diagnosed with Asperger’s, but no longer has the condition, then he must never have actually had Asperger’s. He argues the possibility that a potentially large group of individuals are having “quirkiness” labeled as a disorder and that “under the rules in place today, any nerd, any withdrawn, bookish kid, can have Asperger syndrome.”
Steinberg argues that some individuals diagnosed as ASD would be better categorized as having “social disability”, and supports his argument by giving examples of successful adults that have been “inappropriately labeled as Aspies”. The focus again is around a theory of over-diagnosing, and the potential harm of establishing a life-long stigma related to such a diagnosis.Both articles seem to stem from a basic concept – all cases of Asperger’s and other forms of ASD are life-long conditions, and therefore anyone diagnosed with ASD as a child, that goes on to lead a successful or “normal” life as an adult, must have been misdiagnosed, or even potentially more damaging, the diagnostic criteria are too liberal and flawed.
The argument is understandable. After all, doesn’t DSM-IV say that ASD is “a continuous and lifelong disorder?” Isn’t that what we tell families when we diagnose a child in his or her pre-school years?
In fact, DSM-IV diagnostic criteria for ASD say nothing about developmental trajectory, anticipated course of the condition, or the eventual adult outcome. The only age-related criterion is the necessary deficits must be present prior to the age of 3 years – thus the implication that ASD is a neurodevelopmental disorder.
It shouldn’t come as a surprise that nothing is mentioned in DSM-IV about outcome, since we still know very little. Only a handful of papers have been published looking at the question of adult outcome. These studies suggest a “very good” outcome in as many as 10-25% of ASD individuals based on DSM-IV diagnostic criteria (Seltzer, 2004; Howlin, 2004; Helt, 2008; Farley, 2009).
If we follow the logic of Nugent and Steinberg, we are over-diagnosing 10-25% of our cases, because “true ASD” is a life-long disability in all cases.
I would argue several possible explanations of the data available in the literature –
1) we are over-diagnosing high-functioning forms of ASD including Asperger’s disorder (as already stated),
2) the natural history of ASD is variable and some individuals follow a favorable developmental trajectory,
3) our treatments interventions are helping, or
4) all of the above.
I go with #4 as the answer. Those of us involved in diagnostic evaluations recognize the inaccuracy of a clinical diagnosis such as ASD that has no surrogate laboratory biomarker to help with the diagnosis (i.e. the x-ray of the broken bone) and thus the potential for misdiagnosis or over-diagnosis. However, those of us following patients across the lifespan have recognized the fact that some correctly diagnosed individuals can have very good outcomes. Does this then, by definition, mean that our current diagnostic criteria are flawed? I absolutely don’t think so. In fact, I think it would be naïve of us to think that a condition such as ASD, that probably represents a multitude of biologic causes/origins, couldn’t have some good outcomes.
This is not to say that improvements in our diagnostic criteria can’t be made. From what we have heard from Bryan King, MD, and others, we look forward to potential improvements in DSM-V.
Well, then what are my points? First, I do believe some individuals can “out-grow”, for the lack of a better term, the diagnosis of ASD. This is wonderful news to share with families of kids just starting on the “autism” journey. Second, I hope and believe our early interventions do influence the likelihood of these favorable outcomes. I would hate to see “high-functioning” kids not benefit from these early intervention services, as they are often the ones that actually do benefit and respond to therapies. Third, those of us responsible for diagnosing ASD must recognize the potential harm of over-diagnosing, as emphasized by Nugent and Steinberg. A new set of problems, maybe just as damaging as not receiving appropriate services, could come from this.
And last – I always enjoy a good argument, unless it is with my wife.