Autism

Collapsing the Spectrum--And Expanding it Again: DSM Considerations

Published May 26, 2009 @ 09:05AM PT

a square glass-top case, in the center is an oval with the word 'BEETLES' and a large among of unreadable text in it.  the rest of the box is filled with a large amount (like more than 25) of different kinds of beetles in all shapes and sizes.  all of the beetles have been positioned so that they face in toward the oval with the text.The DSM-V Neurodevelopmental Disorders Workgroup has posted a report from their April meeting with some of their considerations for changes to the Pervasive Developmental Disorders section. No final decisions have been made yet according to the report, but the recommendations, if taken, do present a departure from current criteria--and language.

The first two items from the report:

1) The Workgroup is considering a change in DSM-V that would replace the Pervasive Developmental Disorder (PDD) category with the title "Autism Spectrum Disorders" (ASD). The change would utilize a single diagnosis for the disorders currently entitled: Autism, PDD-NOS and Asperger disorder...

...
2) To better reflect the symptomatology and clinical presentation of ASD, changing the three current symptom domains (social deficits, communication deficits and fixated interests/repetitive behaviors) to two (social communication deficits and fixated interests and repetitive behaviors) is also being considered.

So, only one ASD, not three PDDs. Only two categories for criteria, not three.

The third recommendation is this:

3) Symptom severity for ASD could be defined along a continuum that includes normal traits, subclinical symptoms and three different severity levels for the disorder.

The report then goes on to give an example of one possible model for this continuum.

It's good that some of the deep issues with the current criteria (e.g., from the report "Separation of ASD from typical development is reliable and valid, while separation of disorders within the spectrum is variable and inconsistent.") are being addressed with the simplification made in points 1) and 2). But is it possible that the same problems will just resurface again from point 3)? In other words, while separation of ASD from typical development may be reliable and valid, mightn't separations of severity within that spectrum be variable and inconsistent? Thinking here especially of the high degree of variability in "severity" that often exists across an individual's life span, depending on age, available support, and a huge number of other possible factors.

Also, what will such a classification system do to the sorts of opportunities that are made available to individuals? How to stay away from the "self fulfilling prophesy" problem of because a person is given a "more severe" label, others to have low expectations of them, and therefore they are not given any opportunity or encouragement to exceed those expectations? Or, alternately, how to stay away from the issue that a "milder" label could prevent a person from accessing support they need for survival?

So many questions that directly effect so many of our lives from a bunch of words thrown together by a bunch of people few of us will ever meet--

What do you think of these three points being considered for the new version of the DSM?

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Comments (18)

  1. Elesia Ashkenazy

    I definitely foresee problems arising from diagnosing the severity of Autism Spectrum Conditions, as autistics often have uneven skills--especially when you venture into lifespan considerations and variable factors. And yes, it is important to guard against negative *self fulfilling prophesies*. 
    It's heart-breaking to realize that it's going to take monumental understanding and insight in order to even attempt to correctly define autism--sigh. 

    Posted by Elesia Ashkenazy on 05/26/2009 @ 11:08AM PT

  2. Alexander Cheezem

    Hey, Dora!

    I haven't read the report yet, but I think you should know that your link to it probably doesn't lead where you want it to...

    Posted by Alexander Cheezem on 05/26/2009 @ 12:55PM PT

  3. Dora Raymaker

    Oh goodness LOL!  I know what happened but it's a long boring story so I'll save it.  Fixing now, thanks!

    Posted by Dora Raymaker on 05/26/2009 @ 12:59PM PT

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  5. dinah murray

    Thank you Dora, yet again, for alerting us to a very important story.  These issues have a huge impact on future practice. Educated debate is needed; public and especially autistic scrutiny of the decision making processes is essential - and urgent!

    Posted by dinah murray on 05/26/2009 @ 02:42PM PT

  6. Dora Raymaker

    And yet--I'm not sure if there's much we can really do to affect this decision?  Let's keep a look out for how and if the committee intends to honor the item from the report: "feedback will be sought from professional and lay communities before the Workgroup finalizes their recommendations."

    Posted by Dora Raymaker on 05/26/2009 @ 02:55PM PT

  7. Phil Schwarz

    Here is some feedback to begin with.

    I think the proposed language for the DSM V is flawed in several respects -- but repairable.

    First: there need to be more than 2 diagnostic categories.  As one single example: atypical sensory processing is a *huge* omission.  It's literally the 8-ton elephant in the middle of the figurative cocktail party at which the diagnostic standards are being established.  If there is any single diagnostic feature present in one form or another ubiquitously across the spectrum, it is atypical sensory processing.

    Second: one of the 2 diagnostic categories they *do* propose retaining is a *sequela*, not a primary symptom -- rigidity and repetitiveness of behavior, which is a defensive *response* to primary sensory, communication, and/or social distress.

    Third: removing difficulties in communication as a diagnostic category makes no sense at all.  The nature of communication difficulty varies across different points of the spectrum, but one or another manifestation of difficulty communicating (with the nonautistic majority), whether it be basic formation of expressive speech, higher-order organization of expressive speech or written communication, or real-time processing bandwidth for receptive speech, is quite often present, and significant.

    Fourth: the claims of stability of diagnosis based on severity of one or another of these diagnostic categories need further examination.  Many people on the spectrum make significant gains over the course of their developmental trajectory in the very categories in which they are initially categorized as significantly disabled.

    Fifth: the elimination of shorthand terms to identify particular common configurations of initial symptomatology in the (hopefully, ultimately, more than just 2) diagnostic categories is not a good idea.  The common configurations are starting points for determining needs and priorities in education, accommodation, and support.  A child characteristic of what is now colloquially called "classic" or "Kanner" autism (even though Kanner's own patients by no means all fell into that category) is likely to have as a top-priority need the development of alternative means of expressive communication, in lieu of expressive speech (or in parallel with efforts to help jump-start it), whereas a child characteristic of what the DSM IV calls "Asperger syndrome" is likely to have developed expressive speech and thus not have that need.  It must be understood that as development progresses the needs of these common categories will overlap and in some cases converge, but they start out at points different enough to shape the priorities of need differently at the outset.  I think the existing "shorthand" labels should be retained and in fact expanded upon -- and then used with care -- so that configurations of *priority* and *need* for particular supports and accommodations can most easily be recognized and met by the non-research stakeholders in the DSM: educators, clinicians, allied health providers, insurers, and most importantly, individuals on the spectrum themselves and their families and supporters.

    Posted by Phil Schwarz on 05/26/2009 @ 08:39PM PT

  8. Laurentius Rex

    Phil I think you have missed the point somewhat.

    The Triad is dead, for how long now have we been saying that lack of imagination is not a symptom of anything but inability of the psychiatrist/clinician to have any when dealing with autism.

    language and communication are intimately connected, if one considers what language is, (which is more than verbal)

    Yep sensory needs to be dealt with, but really were we expecting Rocket science from DSM?

    It is a book and researchers will continue in there own way despite of it anyway..

    I would be interested to know what is happening on other fronts than the autism front, but I suspect that the book is just going throug a periodic re-alignment with practice rather than any radical new redefinition of anything.

    Posted by Laurentius Rex on 05/27/2009 @ 12:20AM PT

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  10. Laurentius Rex

    Well what it shows is that DSM is a political document that follows practice rather than defines it, in the sense that once again American Psychiatric Practice is finding that it cannot isolate itself from prevailing European clinical practice.

    It happened before when the criteria where shotgunned into conformity with ICD10 and it is happening again since it has become somewhat more usual to dispense with the seperate monikers in the UK and other parts of Europe and simply lable everyone ASD.

    Now all they need for complete common sense is a multiaxial analysis of "severity" and they will be completely there. But they won't will they, because that would be getting far too close to reality for the profession.

    Meanwhile I shall go off and learn the maths to describe the space within spaces, and leave Psychiatry and  Indiana Jones to sort out the space between spaces :)

    Posted by Laurentius Rex on 05/27/2009 @ 12:14AM PT

  11. dinah murray

    re the maths to describe the space within spaces, you could try The Laws of Form by George Spencer Brown.  I got a real logician person to check it out, and he says its arguments are logically sound.  It's short, elegant and incisive.  I've no idea whether I understood it really, but I seemed to at the time.

    Posted by dinah murray on 05/27/2009 @ 12:28AM PT

  12. Laurentius Rex

    I have tracked down a copy, written in 1967 and published in 69 very much a piece of it's time with references to the I Ching and RD Laing :)

    Not really what I was looking for though, it seems to be more about establishing mathematical expressions from first principles and although the author thinks he is being clear and explaining everything to the novice, he really is not, and assumes more background than he ought.

    I think I shall just have to invent a way of expressing points, vectors and volumes in n dimensional segments of infinate dimensioned space, and hope it will do. I suppose that is what everyone else does, and if it passes muster, that's fine, if it doesn't then I shall just have to be content with my ranking among the pseudoscientists :)

    The logic seemed fine, essentially he was saying "I can use *my* language to establish any kind of expression that will hold true in that particular world I have called into being, (having defined in the process what *he* means by call.

    Philosophically and imaginatively it won't stand up, in that as a creature of his time he is not aware of how his neurology and our evolution bounds what he can express through that kind of symbolic logic, and his worst fault is assuming the particular world he conjures is capable of expressing all possible worlds, when in my conception of reality, all he is explaining is that he can express a limited way of describing all possible worlds that is not bounded in any platonic external, universal, meta-universal, and multi-universal reality at all because he simply lacks the equipment to envisage that any bendy or flexible alternative set of rules might not exist if the *rules* of physics, and human consciousness were alternately configured. Now that is something I can imagine, but of course I cannot prove it, except by using language to distort logic, because the system of language, being what it is, and how it works, can do that. I guess however even Charles Dodgson knew that.

    Posted by Laurentius Rex on 05/28/2009 @ 03:00PM PT

  13. Laurentius Rex

    Or of course I could just plain admit that this bear of little brain found even that *simple* book too much for him and needs to go back to relearning a little old fashioned algebra and set theory and building from there. It really was more than thirty years ago that I gave up on it all, and my brain has probably got considerably more rusty in the interim.

    Posted by Laurentius Rex on 05/28/2009 @ 03:08PM PT

  14. Reply to thread
  15. Katie miller

    Definitely sensory integration needs to be added and the bit about imagination is obviously false. Our community knows this, yet I don't understand why the medical community fails to realize these two key points. I do worry about the "severity" levels. There are infinite variables in a person's life that contribute to so-called "severity", such that for many people it may be near impossible to categorize them. The greatest concern, of course, is that these labels will be used to deny people services and that certain services will be deemed only for "level 1 Autistics"  or only for "level 3" and so on. This already happens, but I fear that the suggested revision of the DSM will institutionalize bias even more.

    I do agree that it is advantageous to do away with the aspgerger and pdd-nos categories, and list everything under ASD. I just wonder about the best way to accurately describe the differences in ASD without doing harm to those with the diagnosis.

    Posted by Katie miller on 05/27/2009 @ 07:51AM PT

  16. Patricia Robinson

    Dora,

    Thanks for posting the link to this information. Removing the separation between Asperger's and autism would be useful, because the distinction seems very arbitrary from a clinical perspective. Adding in more gender specific behaviors is desperately needed so girls and women get diagnosed accurately.

    My big concern is about the severity issue. What impact will this have on obtaining services for children and adults? Right now, too many adults are excluded from getting the services they need because of a diagnostic label. Will this new DSM make the situation better or worse?

    Posted by Patricia Robinson on 05/27/2009 @ 11:17AM PT

  17. I think it'll make it worse for obtaining services.  Because even most adults I know with what'd be classed as so-called "mild" autism need extensive services compared to the services non-autistic people need.  But people would see the word "mild" and assume there's not a problem there, just like they so often currently see the person speaking to them out loud and deny them services on that basis alone.

    Posted by Amanda Baggs on 05/27/2009 @ 11:46AM PT

  18. Reply to thread
  19. Good grief, it's going from one annoying category system to an even more annoying category system.

    I find it ironic that they're re-examining whether mild, moderate, severe, and profound MR are useful categories, and yet imposing an identical category system upon autistic people.

    And considering that we tend to vary day to day, minute to minute, etc., and that our skills themselves are highly uneven compared to non-autistic people (whose skills are highly uneven compared to ours, in turn), it's just setting us up for disaster.

    I don't want to have to put mild, moderate, or severe after my autism diagnosis in any medical context.  (It's hard enough to persuade doctors to stop writing terms like "severe" next to "autism".)  It's just aggravating all over.

    Posted by Amanda Baggs on 05/27/2009 @ 11:44AM PT

  20. Laurentius Rex

    Indeed if one is taking a funtional model of severity then this is surely it, and is somewhat behavioral in its outlook allowing the notions of severity to be totally socially constructed by those who are least qualified to do so.

    It's the perfect example of trying to make a medical model out of something that won't comply in an orderly way to that episteme.

    I personally think they want to get shot of a lot of awkward people, whom they will accept (because you can't turn the research clock back) as autistic in one way or another, but not accept as people whom society has disadvantaged in an increasingly communication oriented economy.

    It is going to end up as another meaningless compromise to be argued over for the next decade, whilst they hope for "holy grail" of biological markers to materialise, (which they will not in any form that they currently imagine they will, that I can guarantee )

    Posted by Laurentius Rex on 05/27/2009 @ 04:04PM PT

  21. Phil Schwarz

    Good catch, Amanda, something I omitted in what I wrote: the issue of *variability* of abilities over time and social context.  The "mild", "moderate", "severe" stuff in the proposed diagnostic descriptions completely fails to take that into account.

    Posted by Phil Schwarz on 05/27/2009 @ 09:42PM PT

  22. Reply to thread
  23. Laurentius Rex

    Having now seen the somewhat ill thought out categories for severity I am inclined to relent on my earlier optimism: -

    I can now see in relataion to the severity criteria where the reduction of the autistic domains to two can cause confusion, in that looking at myself and notions of clinical and sub clinical there arises an inevitable degree of confusion over ritualm for as someone diagnosed (presumably according to former criterion) of OCD then I automatically fill one .

    As to communication and funtional communciation that raises minefields and ressurects the debates of Bernstein and Labov over elaborate and restrictive linguistic codes, class, ethnicity and a whole lot more that define communication given the possible educational disparities between clinician and patient, or patients family.

    Sure I could converse fluently on topics of philosophy with a clinician, (and usually do) but can I turn round and say where it hurts, or ask for a cup of tea or to go to the bathroom, no I cannot. However in one domain the discursive style is valued and even necessary, to wit academia.

    I wonder how much of this is caused by politicing, the recognition that not everyone sees the different cognitive styles as disability and the desire of clinicians to have a get out clause for the all the self diagnosing aspies out there.

    I argue that it continues to be a disability and even failure to be accepted with the lable is itself as much as a socially defined disability as being granted it, for this is all very much medical model at the boundaries where medical model simply does not work

    Posted by Laurentius Rex on 05/27/2009 @ 03:57PM PT

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Dora Raymaker

Dora is committed to improving quality of life for individuals on the autistic spectrum--including herself! She is Co-director of the Academic Autistic Spectrum Partnership in Research and Education and a member of the Autistic Self Advocacy Network's Board of Directors.

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