How to negate positive outcomes of the DSM-5 autism changes.

I was not entirely opposed to the DSM-5 changes to the criteria for an autism diagnosis; I saw many benefits, which I outlined in a previous post. Now that the DSM-5 is finalized and available (to those who can afford to buy it at any rate), the critiques are building, not subsiding. Most of the critiques are of the general variety we are already familiar with: The pathologising of normal, the expansion of psychiatry (and thereby, drugs) into areas it doesn’t belong and is best left out of. Some have taken the change to renew all-out attacks on psychiatry itself and the way mental illness is (ab)used in society already. However, for all that, I kept hoping it would at least deliver the potential benefit for autism.

By Jake Bouma, via Flickr

At least some of those key benefits, are now demolished. In particular, the benefits around the clarity of who would now receive an autism diagnosis, and what precisely would be required for an autism diagnosis. Dr Allen Frances has described the two key flaws of the criteria in this clearly written article. I want to add my own concerns and analysis to what he has to say.

The wording of the DSM-5 appears to have committed the same impactful error that we saw in a previous edition when PDD-NOS was over-inflated by the replacement of the word “and” with the word “or” in the list of criteria (a detail that I learned through Grinker’s book “Unstrange Minds.”). That text error held sway from 1994 until revised in 2000. But what we’re seeing in the 2013 DSM-5 appears to be the complete absence of any “ors” or “ands” in the criterion guidelines for social communication and interactions deficits. In the words of Frances: “The really fatal flaw here is that no instructions are given as to whether one item, two items, or all three items must be present to make the diagnosis of Autism Spectrum Disorder.” (See his article for the official list of possible items.) This could (and is likely) to have a very real impact on the accuracy of diagnoses across different practices, and similarly then impact on the accuracy of researching those who have received a diagnosis.

The second “fatal flaw” is particularly interesting from the view of autism politics and autism pressure groups: Leading up to the DSM-5 there was significant concern about how the new criteria would affect services and supports for those who currently have an autism diagnosis, as well as how it would hurt those who already positively identify as autistic. Despite constant reassurance that numbers would not be drastically affected, and backing up those reassurances with studies that claimed the same, it appears that the DSM-5 drafters felt compelled to clarify the matter further by explicitly stating in the new criteria that those with a “well established DSM-IV diagnosis” should also receive the new autism diagnosis.

This means you potentially have a sub-type of autism, depending on how seriously you take the studies that actually found a significant discrepancy in those who once were considered autistic but wouldn’t have been under the new guidelines: If there really is a large difference, then doesn’t including them in the new diagnosis group, change the clarity and consistency of what autism is? Isn’t it now then a merge of DSM-IV and DSM-5, rather than the DSM-5 which was meant to be such a huge improvement on the DSM-IV? As I said, a sort of “sub-group” of those who may not have otherwise met the DSM-5 criteria? What then, does this do to research on autism that uses a diagnosis of autism under the DSM-5, would it perhaps make sense to always note that the person had the diagnosis only because it was established under DSM-IV, and if you do this, wouldn’t it make sense to always then determine too if they do actually meet the new DSM-5, for any potential research purposes? What’s the point of a new DSM that says the old DSM is still valid?

I’m sure some of those concerns would be dealt with by researchers that always first re-establish a diagnosis prior to getting involved in their research (I’m not a researcher, I only read the occasional paper and paper critique, so others would know better), but it seems to add an extra layer of confusion and perhaps a certain level of redundancy to the changes for what autism now means; the sort of uncertainty that was meant to be fixed by the DSM-5.

I also wonder what exactly is meant by “well established” in this context? Does that mean someone who has had their diagnosis for two years, ten years, does it include those who had a borderline diagnosis, or is that not considered “well established”?

Frances specifically voices the concern that the wording allows clinicians to simply choose then whether to use the DSM-IV or DSM-5. At first I found that a bit of an extreme interpretation of the words, but the more I thought about it, the more it seemed a perfectly defensible action in the mind of a hypothetical clinician: If the DSM-IV criteria counts as autism under the DSM-5 for existing patients (which is the more obvious reading), then what sense would it make to deny that flexibility to new patients? Surely it would be arbitrary to do so? (And again, this may turn on how one even reads “well established,” could it perhaps apply to a new patient if the condition itself is well established under the DSM-IV criteria despite not previously being diagnosed?)

You may know the answers to these extra questions I raise; I am just a parent with an intense interest in the diagnostic criteria history of autism. If you know the answers, please share them; I want to understand. Regardless, it seems to me that the much-needed and much-touted clarity of the DSM-5 over the DSM-IV criteria for autism, has been undercut at the outset. Disappointing to say the least, the words “disastrous” or “failure” might be relevantly applied too.

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8 Responses to How to negate positive outcomes of the DSM-5 autism changes.

  1. nostromo says:

    In the context, “Well established” to me means 1, The diagnosis was made prior to the release of DSM 5, and 2. It is unambigiuous, in other words it needs to fit a DSM IV diagnosis without any doubt.

    • I consider that to be a very reasonable reading of the term nostromo, that was how I initially thought it would be used too. I suppose time will tell how it is interpreted and used by clinicians.

  2. mattyangel says:

    Thank you for sharing this, I shared on twitter.

  3. Vicki says:

    I found this very interesting. My daughter is about to start school and has the current ‘descriptive’ diagnosis of ‘a social communication disorder with Asperger’s-like traits’. Now to me that is the best fit given her behaviour but she is certainly someone for whom the question of how many of the criteria you need to meet is absolutely vital in terms of whether she needs an autism diagnosis. She is highly gifted in some academic areas, but socially delayed and arguably ‘looks like’ a child with Asperger’s (as was) from a purely social perspective. She is, however, highly and originally imaginative in a way that the paed implied was unusual in a child with ASD. She also has no routine dependence, no issues with flexibility, no need to know what’s happening next etc. At the moment she does not really meet enough criteria to warrant a diagnosis, but we are revisiting after her first term at school to see whether anything has changed. I can entirely see, however, how a lack of clarity over exactly how many ticks you need in which boxes to determine your diagnosis, could easily cause wide-ranging and significant confusion and muddy diagnoses.

    • Hi Vicki. Thanks for sharing your own experiences with the difficulty of pegging down a diagnosis, and the sort of complex considerations that can feed into that decision, I always find it interesting to hear how diagnoses are established (or not established) in these less-straight-forward situations.

  4. Laura Genet says:

    I agree with the claim that the DSM-V criteria are hardly clarifying, but I think it’s over-the-top to think that professionals will scrap the new criteria and just rely on the DSM-IV for new diagnoses. I think that if Frances had never put that out as a possibility, it would never have occurred to most people that the wording would allow for such a thing.

    • Laura, neither Frances’ article nor my post said the DSM-5 is scrapped or likely to be scrapped (but there’s an argument that it should be!). If you read the DSM wording, and my explanation of why it’s problematic, you’ll see the problem is that either can be relevant for someone with an autism diagnosis, that is in no way the same as saying the DSM-5 is scrapped. It matters for research purposes, and for clarity in general, EVEN IF it only applies to those who already have a diagnosis, which is to say, that even on its tightest reading, it remains problematic – the question just becomes how far that problem is likely to extend.

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