Proposed Revisions to the Diagnostic Criteria for Autism Spectrum Disorder

As you may have heard, the American Psychiatric Association has proposed sweeping changes to the diagnostic criteria for autism spectrum disorders (ASD). As a result of these changes, it is estimated that 45-80% of those previously diagnosed with an ASD will no longer qualify for that diagnosis. I understand that there may be a new substitute diagnosis referred to as "social communication disorder", which may be applied to those who no longer qualify as having an ASD.

There are so many Big Issues that I don't feel qualified to weigh in on here. Will this lead to a more or less just allocation of resources? What about the issue of identity? After all, "asperger's" is more than just a label; there are huge swaths of people who identify as "asperger's." You can switch up a diagnostic manual, but you can't just take away a sense of identity from people. Will those with asperger's coalesce around the new label ("social communication disorder")? How will these changes affect my son? These are fascinating questions. I don't have answers.

I'm writing in reaction to a post I read by another blogger, and I'm just writing to put my anecdotal experience out there. Writes another blogger whom I admire and respect (emphasis added by me):

I do understand that the surge in ASD diagnoses has placed a huge burden on the healthcare system and school budgets. If it's true that a large fraction of ASD kids are improperly diagnosed today, it would stand to reason that the services currently being delivered are not needed. If so, where is the outcry over waste? There isn't any, because it's universally accepted among recipients that the services ARE needed.

With all due respect, I wouldn't say that this is universally accepted. May I direct you to Exhibits A, B and C. Not every child benefits from intensive ABA. The agency we used at one point told us Bradley doesn't need the services they were providing. They set up goals for him, recorded his progress in a binder and it soon became obvious he wasn't enough developmentally impaired to benefit from the program. He maxed out very quickly, meaning he met all the goals they established. In hindsight, this was a colossal waste of resources when you consider the cost of ABA and the children in other communities who are much needier and who don't have access.

You may counter that my family is in the minority because I am in Massachusetts where services are abundant. True, but autism advocates lobby national companies to add an autism benefit. If a national autism benefit were added, families like mine represent potential claims experience - a substantial liability with respect to which the benefit of coverage is uncertain. The new definition of autism represents a way to manage that liability and tie it more closely to a population that is more likely to benefit from the services. Managing that liability may, in turn, result in increased coverage. For this reason, my at-first-blush reaction is that the revised definition will be beneficial.

DSM- V Epilogue

This week, we learned arrogance has a price.

To recap, the proposed DSM-V (which defines the defines the diagnostic criteria for autism) has been criticized for several reasons, including its insular process. Of the process, Dr. Allen Frances writes:

The secretiveness of the DSM‐V process is extremely puzzling. In my entire experience working on DSM‐III, DSM‐IIIR, and DSM‐IV, nothing ever came up that even remotely had to be hidden from anyone. There is everything to gain and absolutely nothing to lose from having a totally open process. Obviously, it is much better to discover problems before publication ‐and this can only be done with rigorous scrutiny and the welcoming of all possible criticisms.

Apparently, DSM-V Task Force knows it all because, by all outward indications, they prefer a closed process. When the self-appointed stewards of psychiatric diagnosis speak, the rest of the psychiatric community must bow to their wisdom.

But! This week, in a small victory to the DSM-V critics, the American Psychiatric Association (APA), announced it would postpone publication of the controversial DSM-V until 2013. The APA previously insisted the DSM-V would be published in 2012, critics be damned. The change of heart may have been prompted by an editorial published by the New Scientist, which suggested that the DSM V be replaced by an open source model:

With the advent of the internet, there is no longer any compelling need to rewrite the diagnostic criteria for the whole of psychiatry in one go. Yes, diagnoses should be revised as new scientific findings come in. But for this, specialists can be assembled when necessary to address specific areas that have become outmoded. Their suggestions can be posted on the web for comment. More research can be commissioned, if necessary. And when consensus is reached, new diagnostic criteria can be posted online.

Scientific method over ego. Consider this blogger sold on the New Scientist proposal.

And speaking of arrogance, this week Tiger Woods learned he isn't beyond reproach either. Which is ironic because the DSM V Task Force would have pathologized Tiger's...er...proclivities if they had their wish. And they may still do so, but at least it won't happen until 2013. I hear they're going to use the extra time to do more research, so perhaps Tiger can be a subject. Arrogance vindicating arrogance.

The DSM-V Saga Continues

You can't make this stuff up.

To recap: Certain members of the American Psychiatric Association (the "APA") have proposed sweeping revisions to the DSM-IV, which is used to diagnose, among other things, autism. With respect to autism and other conditions, the proposed DSM-V will include "dimensional ratings" and "subclinical" designations. This is said to represent a paradigm shift. The chair of the DSM-IV task force, Allen Frances, sharply criticized the proposed revisions and the lack of transparency of the process. The APA came out swinging with its rebuttal, in which it accused Frances of bias and financial motivation: the DSM V revisions will render the DSM-IV handbook, which Frances authored, obsolete.

Update:

1. Predictably, Frances took umbrage. Those royalties he'll be forfeiting when DSM V is published? $10,000 per year. Which, for him, is probably nothing. He doesn't write that, because that would be crass, but that's the implication. Frances also challenges the APA to be tranparent and make public the exact wording of the proposed revisions, and the research in support thereof.
   
   
2. One of the members of the Workgroup on Disorders and Childhood and Adolescence has resigned in protest. This is the group that is deliberating over the inclusion of sensory processing disorder in the DSM V. She writes:
   
   "I am increasingly uncomfortable with the whole underlying principle of rewriting the entire psychiatric taxonomy at one time. I am not aware of any other branch of medicine that does anything like this....There seems to be no good scientific justification for doing this, and certainly none for doing it in 2012."
   
   So even if SPD were included in the DSM V, who is going to respect it? The process appears to have little integrity.

Related: Bitterness, Compulsive Shopping and Internet Addiction [via Slate]
Secrecy and Made Up Illness: The Latest Fight Over Psychiatric Illness [Via Doublex]

Another Esoteric Post About DSM-V

Remember those proposed revisions to the DSM?

Hold the phone. Apparently, a shitstorm is brewing.

Dr. Allen Frances, who headed the DSM-IV task force, fired the opening salvo with this blistering criticism. He writes:

Undoubtedly, the most reckless suggestion for DSM‐V is that it include many new categories to capture the milder subthreshhold versions of the existing more severe official disorders. The beneficial intended purpose is to reduce the frequency of false negative missed cases thus improving early case finding and promoting preventive treatments. Unfortunately, however, the DSM‐V Task Force has failed to adequately consider the potentially disastrous unintended consequence that DSM‐V may flood the world with new false positives. The reported rates of DSM‐V mental disorders would skyrocket, especially since there are many more people at the boundary than those who present with the more severe and clearly "clinical" disorders. The result would be a wholesale imperial medicalization of normality that will trivialize mental disorder and lead to a deluge of unneeded medication treatments‐‐a bonanza for the pharmaceutical industry but at a huge cost to the new false positive "patients"caught in the excessively wide DSM‐V net. They will pay a high price in side effects, dollars, and stigma, not to mentions the unpredictable impact on insurability, disability, and forensics.

* * *

A third category of DSM‐V innovation would create a whole new series of so‐called "behavioral addictions" to shopping, sex, food, videogames, the Internet, and so on. Each of these proposals has received little research attention, and they all have the potential for dangerous unintended consequences, by inappropriately medicalizing behavioral problems, reducing individual responsibility, and complicating disability, insurance, and forensic evaluations. None of these suggestions are remotely ready for prime time as officially recognized mental disorders.

I do not have space to enumerate the dangers of all the other innovative suggestions for DSM‐V, but I will list just some of the riskiest that require the most careful review and caution: adult attention‐deficit/hyperactivity disorder (ADHD) and adult separation anxiety disorder; making it easier to diagnose bipolar disorder; pediatric bipolar, major depressive, and trauma disorders; autism spectrum disorders; new types of paraphilias and hypersexuality disorder; and the suggested rating list to evaluate suicidality. [Emphasis added.]

Nice, huh? Sensory processing disorder inspires skepticism, and its inclusion is predicated on copious research. But shopping addiction? That's pathological! Maybe we should dress our sons in Manalo Blahniks? Label that, doc!

You can read the American Psychiatric Association's rebuttal here. The rebuttal has been criticized for its uncivil tone, and lack of substance.

To learn more, read DSM V Badly Off Track.

Source: Michelle Dawson's Twitter account

Not that DSM-IV doesn't have me sufficiently confused....

...check out DSM-V. Well it doesn't exist yet. But here is a preview of issues that the authors will consider when revising DSM-IV. One that caught my eye is "Is Autism a Life-Long Diagnosis?" - a theme I have not only explored on this blog, but lived. Vicariously. Also interesting: the discussion of asperger's versus high functioning autism ("HFA"). What differentiates the two according to DSM-IV criteria is the presence of significant speech delay. But there is some debate as to whether the two conditions are etiologically distinct:

Asperger’s Disorder – is it Autism? In her introduction, Francesca G. Happé, Ph.D., (London, UK) raised some of the key questions that have arisen regarding the diagnosis of Asperger’s Disorder, which was introduced into DSM-IV in 1994. These questions include: is there an ‘Asperger’ subgroup of autism with distinct cause, course, cognitive profile, and intervention needs, and if so, what is its relation to other ASDs?...Asperger’s disorder has...had an impact on family studies of autism with regard to what we recognize as “caseness.” Dr. Happe noted that the current criteria do not work: they do not allow for developmental change, the early language criteria do not demarcate groups with different prognoses, it is hard to apply the diagnosis for adult cases, and there is no clear conceptual basis for the diagnosis. Dr. Happe concluded that although there is a recognizable Asperger’s type and that some cases of classic autism grow into this picture, she wonders whether there may be a better classification schema. Sally Ozonoff, Ph.D., (Sacramento, CA), in her presentation, compared high functioning autism (HFA) with Asperger’s, and noted that there were few differences in their definitional DSM-IV criteria; both require two social symptoms and one repetitive/stereotyped symptom, both are in the average range intellectually and have current fluent language. The main criterion distinguishing the two disorders is the requirement in Asperger’s that onset of language occurs at the expected time, e.g., single words by age 2. Dr. Ozonoff noted that it is difficult to evaluate the literature since definitions vary across studies and that many children who are thought clinically to have Asperger’s actually meet criteria for autism (which supercedes a diagnosis of Asperger's). There is some evidence to suggest that Asperger's and HFA do not represent distinct disorders: they co-occur in the same families and do not “breed true” (i.e., family members of patients with Asperger's have HFA and family members of patients with HFA have Asperger's); children with autism who develop language have similar outcome to Asperger's; HFA and Asperger's are indistinguishable by school-age; and although studies find better language skills and/or verbal IQ in Asperger's, multiple studies have found no group differences in other neuropsychological domains.

Basically, we're in the abyss. I mean, I used to think, oh that CAN'T be a possibility for Brad. Silly me, looking for bright lines. I'll never learn! I have since downgraded "CAN'T" to "maybe not", bordering on "possibly some day in the distant future."

I figured this is worth a mention since a number of my bloggy friends are exploring asperger's.