Wednesday, February 10, 2010

Proposed new autism criteria: the DSM-V

Here they are and here are ten off-the-cuff thoughts:

1. The most sit-up-and-take-notice change is the total removal of Rett syndrome from the DSM. It is gone. The DSM-V people are saying, "genetic syndromes don't belong in our book," or words to that effect, and I agree.

2. Indeed the vast majority of named neurodevelopmental disabilities do not appear in the DSM, past, present, or future. This raises the question of why autism is there. Rett's being excluded is not going to immediately result in Rett's individuals being catastrophically deprived of recognition or assistance. Instead it may result in these individuals being regarded more accurately, to their great benefit. Removing autism from the DSM would have the same beneficial effect.

3. Another change to grapple with: CDD (Childhood Disintegrative Disorder) is now lumped in with autism, which in turn has a single vaguely phrased onset criterion. To cover CDD (Volkmar et al., 2005), that criterion will have to cover onset at age 5 (fairly common in CDD) and up to age nine (rare, but happens).

4. In addition, autism and CDD have very different cognitive profiles. This is one of many ways in which the DSM-V, even more than its predecessor, is running away from the productive and beneficial--to autistics--notion of autism as a cognitive phenotype.

5. The headline-making but most predictable--and most predictably responded to--change is the loss of Asperger's and PDD-NOS, which have both always been considered part of the autistic spectrum, as distinct-from-autism diagnoses. Whatever their shortcomings, the loss of these diagnoses is another signal that autism is, officially and more so than ever, merely a series of deficits in overt typical behaviour.

6. At the very least, the DSM-V strongly discourages any view of autism as an atypical cognitive phenotype involving relative (to nonautistics) cognitive strengths and weaknesses.

7. The changed criteria, which collapse the DSM-IV social and communication domains, overlook any role for manual and oral motor abilities in these two areas. And whose definition of the now-mandatory social reciprocity criterion will prevail? Here is John Constantino's one-way-street definition:
Reciprocal social behavior refers to the extent to which a child engages in emotionally appropriate turn-taking social interaction with others.
The closer-to-equal time, so to speak, now granted the previously-relegated RIRB (restricted interests and repetitive behaviours) domain could be seen as progress, ditto the disappearance of the "nonfunctional" assumption. But autistics will no longer have DSM-IV unusually focused and intense interests (a strength), we will instead be pathologically fixated.

8. The vagueness and subjectivity of the criteria should later be elaborated on with explanatory text which may add or subtract clarity. And the highly-publicized DSM-V effort to rank and classify all autistics according to a rigid hierarchy of "severity" is as yet missing. How the DSM-V will handle aspects of the by-far most important distinction within the autistic spectrum--the idiopathic vs etiological autism distinction (and see genetic syndromes, above)--remains to be seen.

9. While the DSM-V has enormous political clout, what might change in actual diagnostic practices is unclear. Clinicians and entities currently employing anything-goes or free-for-all and/or expedient-type standards are unlikely to change in this respect. And in many ways DSM-V autism is autism altered to conform to the current "gold-standard" autism diagnostic instruments (see the role of Catherine Lord in both), whose predominance, weaknesses and limitations have come to determine what autism is and isn't.

10. Organizations which (a) have little use for basic autism research (the kind I'm involved in) or actually oppose it; and (b) promote political views of autism, including that more services are always better--will likely be happy with the DSM-V changes. You can see ASAN fulfill this prediction here.


Volkmar, F.R, Koenig, K., & State, M. (2005). Childhood Disintegrative Disorder. In: Volkmar, F.R., Paul, R., Klin, A.,Cohen, D. (Eds.), Handbook of Autism and Pervasive Developmental Disorders . Hoboken, NJ: Wiley.

Postscript: Another view of the new autism criteria is here. An overview of the proposed DSM-V in many areas is here.


Can Autism be Treated? said...

I think that overall the name change would be more of a blessing.

Larry Arnold PhD FRSA said...

The fact that you chose to site from the Volkmar and Klin faction is indicative of your far from neutral stance.

Let's face it Michelle, you lose.

Autism is more complex than a collapsed definition I agree, but then the problem is that science does not yet have a clear verdict on autism however much you want it to.

In other words research needs to proceed until there is evidence for new or differential classifications, the introduction of the various sub categories, was in effect premature and that is the verdict of scientists as qualified as you are to speak on the subject.

For what it is worth Dyslexia, by name is not in DSM IV never has been in DSM that I am aware of but that has never stopped people either diagnosing it or research into it.

Corina Becker said...

I'm trying to do an overview of the many different opinions regarding the DSM-V. I find yours to be very interesting, and was wondering whether I could quote you in an upcoming article.

I also want to make sure I'm understanding this. My only expertise in autism is that I am autistic, and I'm an English major, not terribly familiar with the ins and outs of more technical language (so is my spellchecker, for that matter...). So please, correct me if I am wrong.

-Basically, it's good that Rett's is no longer in the DSM because it's a genetic syndrome, and this won't harm their assistance.

-Being that autism is a neurodevelopmental, you're wondering why it should be in the manual that deals primarily with mental health issues. This is because autism is not a mental health issue (although we can have mental health issues for various reasons, including lack of and inappropriate supports and therapies).

-The DSM-V is moving away from the view of autism as an atypical cognitive phenotype, by adding CDD and changing the criteria, viewing autism as being a series of deficits, ignoring the relative strengths and weaknesses of autistics, and overlooks manual and oral motor abilities when looking at social and communication.

-The vagueness of the criteria leaves speculation on what the severity scale will be, and allows subjective opinions of professionals to play a factor in diagnosing, while calibrating itself to the, as you've put it, '"gold-standard" autism diagnostic instruments... whose predominance, weaknesses and limitations have come to determine what autism is and isn't.'

In general, am I understanding correctly?

Also, in your personal opinion, what changes needs to be done to the DSM-V, specifically to autism if you couldn't have it removed from the DSM?


Michelle Dawson said...

In response to Corina, thanks for your interest.

I suggest quoting whatever bits of what I wrote (with source, so anyone can go fetch the context) that you're interested in.

That's instead of re-phrasing what I wrote with some changes and added implications that I didn't actually write or mean. For example, I didn't write anything about therapies or autistics' presumed mental health issues.

As it is I'm not sure you understand what I wrote, maybe you do...? I can't tell, sorry. In areas you know a lot about, I'm sure I would be totally lost...

And by the way, it isn't just that Rett's is a genetic syndrome. To my knowledge, Rett's continues to be a clinical diagnosis, though this may eventually change. I did try to point out that Rett's, like autism, is a neurodevelopmental disability, and that the vast majority of named neurodevelopmental disabilities are not in the DSM.

And sorry again, I'm not really prepared to answer your last question in comments here, though it's a very good question. Maybe I'll blog about it, when I can.

Corina Becker said...

I'm just making sure I'm understanding what you've said so that I can quote you properly. I would hate to quote you, and then you say that I was quoting you wrong.

And yes, the part about therapies and mental illness was me trying to put things into context. I'll try this again, this time with a little bit more understanding about Rett's.

- You agree with Rett's being taken out of the DSM because it's a neurodevelopmental disorder, and people with Rett's will not lose support. This is because currently Rett's is still a clinical diagnosis.

- Because Autism is also a neurodevelopmental disorder, you think that maybe Autism shouldn't be in the DSM as well.

- The DSM-V has added CDD to Autism, which changes the criteria.

- The DSM-V is moving away from viewing autism as an atypical cognitive phenotype. This moves away from understanding autism in a way that is beneficial to autistics.

- The DSM-V sees autism as a list of deficits from the norm.

- The DSM-V does not acknowledge autistic strengths and weaknesses.

- The DSM-V does not address manual and oral motor abilities when looking at social and communication skills.

- The DSM-V does not provide the severity scale for autism, which leads to speculation on what will define severity.

- The DSM-V's criteria for autism is vague, and allows for the subjective opinion of professionals when diagnosing.

- The DSM-V's criteria for autism is using the "gold-standard" diagnostic tools to define autism.

Thanks again.

Michelle Dawson said...

Hi Corina, some of that is inaccurate. To show the problems I would just be repeating what I wrote in the original post and in my previous comment, sorry.

If you actually quote what I wrote (with source--very important), instead of interpreting and changing it, then you should be okay. Then it will be up to readers to wrestle with what it all means or whatever.

You're totally free to add your own opinions, interpretations, and so on, to whatever bits of what I wrote that you want to quote.

But then it's very important to make it clear that these in fact are your opinions and interpretations, not mine.

Corina Becker said...

Very well then, I will reread the materials when I write up the article. I'll also give you the link to it so that if there's anything that you think I interpreted wrong, I can make corrections.

Thank you very much for your time.

Michelle Dawson said...

Thanks for your patience, Corina. My communication range and abilities are--I've been told--a lot more limited and atypical than what is found or expected in the usual public/political autistics (eg ASAN et al). Chances of this changing are zero to none.

Larry Arnold PhD FRSA said...

Michelle, don't be a sore loser.

Your communication abilities are quite up to doing a presentation at IMFAR, at least they were when I heard you. They are probably a lot better than my presentation skills, which is why I like to fall back on video whenever I can.

You have failed to establish your point here and resorted to snide remarks about political autistics again without producing any peer reviewed and published evidence in any journals of political science as to the influence of ASAN.

I know it is unfair to demand evidence where there is none, but I do wish you would consider that there is a lot more politicing behind the science which your University pursues than you would care to acknowledge.

You have practically accused Catherine Lord of being behind some Cabal to change the DSMV but forget what was going on in order to get Asperger's syndrome in DSMIV, in the first place, when many thought that premature and the introduction of Asperger's was a hypothesisation, a position being taken on a broader autistic spectrum rather than intended as a diagnosis.

As you know and I hope we can agree, DSM is not a scientific encyclopedia, nor does it define disorders and conditions, it merely standardises the descriptors in order that they can be assigned specific codes.

Standardisation is convenient for researchers that is for sure, it allows direct comparisons, but internal validity or consistency of that kind does not necessarily lead to external validity.

Personally I think it will be many years yet before the complexity of autistic subtypes and overlaps is fully mapped, by which time I expect that DSMVI will be in the offing.

I expect by the time DSM VII comes out there will have been a radical rethink as to what a mental disorder is anyway, with a lot more conditions currently considered as such being seen to have genetic and developmental components such that they are in reality neurological not "psychic conditions" psychiatry still suffering very much from metaphysics in it's conceptualisation in an era which has largely done away with mind/body dualism

Michelle Dawson said...

In response to Mr The Author, I have never presented at IMFAR. This can be verified by going through all the publicly-available collections of IMFAR abstracts on the INSAR website.

Larry Arnold PhD FRSA said...

What were you doing in London then, did you not speak to your paper on Ravens Matrices, perhaps I am confusing you with someone else who gave that presentation or I am thinking of another conference.

Larry Arnold PhD FRSA said...

Ah I see, it is that damned prosopagnosia again, I was present and heard somebody speak about Autistic Strengths, not knowing what you look like I just assumed it was you.

Corina Becker said...

I have a question, you say that "autism and CDD have very different cognitive profiles". What are the differences between the two?

Anne said...

Regarding the idiopathic vs etiological distinction, the DSM-V workgroup says this in the discussion of the rationale for proposing the removal of Rett's Disorder:

"Rett's Disorder patients often have autistic symptoms for only a brief period during early childhood, so inclusion in the autism spectrum is not appropriate for most individuals.

Like other disorders in the DSM, Autism Spectrum Disorder (ASD) is defined by specific sets of behaviors and not by etiology (at present) so inclusion of a specific etiologic entity, such as Rett's Disorder is inappropriate. To ensure that etiology is indicated, where known, clinicians will be encouraged to utilize the specifier: “Associated with Known Medical Disorder or Genetic Condition.” In this way, it will be possible to indicate that a child with ASD has Fragile X syndrome, Tuberous Sclerosis, 22q deletion, etc."

It doesn't seem like the DSM revisionists are shying away from including some genetically-based conditions and certain attributes of medical conditions as well. I have no way of understanding how they pick the ones to include. For instance, Tic Disorder Due to a General Medical Condition, why is that going to be in the DSM?

Larry Arnold PhD FRSA said...

Answering Ann, DSM does seem to be a strange beast, and of course it is that way because of how it has grown up, embodying a whole set of societal assumptions in each revision and rejecting others.

Despite the dropping of Homosexuality some time back, it is still not all clear on the complex issues of human sexuality, pathologising some and normalising others as it were as surely as some ancient scribe inscribing a wax tablet of deuteronomic and levitical laws.

People forget too, the alternatives of ICD10 written from a rather different perspective, but none the less error strewn given that it goes back even further to 1992.

Specific learning disabilities need a shake out too, why a seperate reading, and writing disorder, or developmental co-ordination disorder, why seperate tic disorders, when this all comes under a broad and hazy spectrum too, if not a class that contains the class delineated by the autistic spectrum itself.

I also regret that the Kraepelinian nosologies are not being tampered with inspite of research which puts Bipolar and Sz into a broader spectrum as well.

Michelle Dawson said...

In (belated, very sorry...) response to Corina, here is a quote from a paper (Kurita et al., 2004; "ADSL" means "autistic disorder with speech loss):

"Although replication by more specific instruments is needed, the less uneven cognitive skills in CDD than ADSL suggest that, compared with ADSL children,CDD children are less likely to have an islet of ability,which is related to relatively good rote memory and visuo-spatial skills in autism."

These data aren't very strong (small number of participants, very coarse-grained measurement), and I have other problems with this statement, but the general direction is worth noting. A related finding in the same direction was reported in another paper from the same group.

The context is that none of the findings with respect to CDD is very strong... CDD is very rare and the literature is tiny and very limited.

Kurita et al. (2004) speculate that autistics' uneven profile of abilities, which encompasses the possibility of some very strong abilities, might be related to autistics' having the possibility of better outcomes than are found in CDD. This is very speculative, but again I found it interesting.

When uneven abilities are reported in CDD, in my reading at least, this may contrast relatively good motor abilities with relatively poor language/speech abilities. But in autism, in contrast, there is at least some evidence that these two abilities can be related.

Also, as group, CDD individuals have been reported to have more homogeneous ranges of abilities and outcomes than autistics as a group. Again, keep in mind the available information is very limited.

You can find the DSM-V rationale for eliminating CDD here.

Michelle Dawson said...

In response to Anne, within the autism section, the need for add-on "specifiers" and "associated features" is mentioned in the "rationale," and a distinction is made between the two. I don't think this is close to being clear.

In the autism bit, "known genetic disorders, epilepsy, intellectual disability and others" are classified as "associated features," while "severity, verbal abilities and others" are classified as "specifiers."

Maybe some of those "associated features" are just more "specifiers," as per the Rett's bit? The DSM-V people seem not to be very detail-focused...

Also, they seem to be saying (have I got this wrong?) that Rett's individuals should (mostly?) not be diagnosed with autism, even when they persistently meet DSM-V autism criteria (which they may--that's a wild guess, but not totally unfounded).

As I wrote in the original post, I don't think it's clear at all, how the DSM-V will classify, say, the 50% of Williams syndrome people who currently meet ADOS criteria for the autistic spectrum (Klein-Tasman et al, 2008). Will these individuals be diagnosed "autistic, associated with Williams syndrome"? or "autistic, with the associated feature of Williams syndrome"?

Anonymous said...

For what it's worth, I'm a psychologist in private practice and have only diagnosed 3 children with CDD in nearly 20 years of mental health practice. All three had an identifiable neurological problem presumed to be causing the decline in skills. The first, before I was a licensed psychologist, was found to have profound seizures occuring during her sleelp which was leading to brain impairment. Treatment of this seemed to halt further declines but she lost what appeared to be a consistently high IQ if teachers and parents were to be believed (I did) and came to have a spotty profile in which nonverbal skills remained in the superior range and her langauge and academic skills varied widely depending on what was measured. Two others had MELAS (specific rare mitochondreal disorder) which lead to seizers in both and strokes in one. Recovery occured only to be hampered by the progression of the primary disorder MELAS. The child with stroke also had bipolar disorder, as did many members of his family whom also had MELAS and the related sezires and strokes. I believe Houston Children's Hospital was studying the whole family. I was not as savvy in autism diagnosis and treatment then as I am now (still refuse to call myself an expert); however, other than some isolation which I think was a coping skill and some inappropriate behavior that was more impulse control related in the one, I don't think any of these would have been diagnosed as being on the autism spectrum even with the ADOS.

Anonymous said...

I feel separated considering how autism and asperger syndrome are now removed from the DSM. Fucking Autism Rights Movement took themselves too far. *sigh*. I just hope this can be reversed though.