The 4 Main DSM-5 Autism Controversies

DSM-IV-TR, the current DSM edition

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The publication of the DSM-5 is still a long way off (May 2013). But critiques of its proposed changes to the existing definitions and criteria in DSM-IV, for autism and associated conditions, are well underway. I am very interested in not only understanding the changes, but also understanding those critiques.

In this post I will attempt to summarise what I’ve come across as the main criticisms of the changes. This post is not intended as a summary of the merits or strengths of those critiques, just an effort to compile them at this point.

1. The removal of Aspergers.

Aspergers is currently a separately identifiable condition; making up one of the five pervasive developmental disorders that are widely known as the autism spectrum. The DSM-5 proposal has the title of “Aspergers” removed, and subsumed instead under the new “Autism Spectrum Disorder” (ASD).

Most of the concerns with this proposal seem to turn around the meaning and community that individuals have attached to the word “Aspergers,” rather than concern that people with Aspergers will no longer fit-in or receive support under the new ASD criteria.

There is also worry from those already within the heading of “classic autism:” (1) That the addition of people with Aspergers to the name “autism” in this way, will confuse the public into thinking autism is less severe than it often is; and (2) that it will result in a lessening of the much-needed supports that they are already fighting hard to establish.

2. The exclusion of the intellectually disabled.

The new criteria for ASD, has an exclusionary criteria, in as far as the “persistent deficits in social communication and social interaction” of those with ASD, must be “not accounted for by general developmental delay.” “General developmental delay” in this context appears to refer to a variety of other possibilities, such as an “intellectual or global developmental delay not elsewhere specified” or an “intellectual developmental disorder.”

The complaint about this aspect of the proposal, is (1) that this exclusionary criteria is a political move; trying to exclude genuinely autistic individuals, in order to further the agenda of high-functioning autistics, and (2) distorting of the reality that a large proportion of autistic people do have intellectual disabilities.

3. The removal of PDD-NOS.

“Pervasive developmental disorder not otherwise specified” (PDD-NOS), will be subsumed into ASD (somewhat like “Aspergers” will be). There are other categories those who currently have PDD-NOS might also go under instead of ASD, particularly the new category of Social Communication Disorder (SCD).

The key concern here seems to be that those currently listed as PDD-NOS might lose the much-needed assistance that comes with recognition of being on the autism spectrum, if they were to be removed from it. There is also general anxiety as to the uncertainty where these children will now go: Under ASD; SCD; some other disorder; or out of the DSM altogether.

3. The severity scale.

There are concerns that the new severity scale for ASD will be difficult to apply consistently or in a meaningful fashion, and that the misapplication of the scale might have serious consequences for these individuals (including affecting support levels and distorting the experiences and challenges of those slotted into the scale).

These four categories of concerns only represent a portion of the actual changes to the criteria for an ASD diagnosis. Many other changes – some subtle, some major – will come in as well but do not seem to be garnering as much concern or rhetoric as those I’ve listed above. I suspect this will change as May 2013 approaches and those affected by the changes become more aware of how it might impact them.

Here is a selection of pieces (articles, blog posts, news stories and petitions) that directly bring up the controversies and concerns I’ve introduced in my post:

And finally, a link to my previous post which briefly mentioned some of these issues, in the framework of a broader discussion about attitudes to changes in the definition / criteria for autism: “Autism, by any other name…

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8 Responses to The 4 Main DSM-5 Autism Controversies

  1. Nidreya says:

    I live in a country where these petitions : http://epetitions.direct.gov.uk/search?q=autism get about 200 signatures between them while this petition : http://epetitions.direct.gov.uk/petitions/7337 gets around 200,000.

    I don’t believe my shift from ‘aspergers’ to ‘highest functioning category of autism’ will make any difference to the complete lack of help I receive.

    Whether or not the change will reduce or increase the amount of hindrance I receive will remain to be seen.

    • I would expect (perhaps naively) an increase in the amount of help since so much help is currently attached to the label “autism,” at least in schools; I realise that school assistance doesn’t apply to you anymore, but I’m more familiar with the school based help (or lack of help) than I am the support for adults (which I am given to believe is generally not enough across the spectrum regardless).

      As to an increase or decrease in hindrance, my initial reaction is it could make your life worse if I was to go by the reactions of many people with Aspergers to the proposed change.

      I generally get the impression that those publically attacking the loss of the Aspergers category are more concerned about the increase in hindrance (as you word it) rather than the potential increase in help (maybe because they feel they need acceptance rather more than they need help(?)).

      Lots to mull over there anyway. I am tempted to follow up this post with a break-down and discussion of each of the 4 controversies in individual posts.

  2. Thanks for putting this together, especially with some great links. Most of this comment comes from my response to the SRMM post you linked to.

    I honestly don’t know why they didn’t just change the category name from PDD to ASD and leave the rest of it alone. In the long run, they are still trying to fit a neurological disorder into a mental health framework, as another commenter pointed out at SRMM.

    One thing that struck me is having to rule out global developmental delays, especially when the new criteria don’t seem to allow for motor delays, only for repetitive behaviors and stuff like that. I’m glad they added sensory stuff but think motor delays should be acknowledged as well.

    I have to admit that the upcoming changes won’t have much impact on my son’s services, since he already has a diagnosis of autism. We also have constant battles with teachers who think he should be able to “just behave” because he is so smart and who don’t understand why his behaviors can be so extreme at times, so I am not expecting much to change there either. I doubt many of them have ever read either set of criteria.

    • Great comment Aspergirl Maybe. Some important points and questions.

      If you did want to read further about why they’re proposing the changes, you can read the rationales that go with each change on their main website, there’s also a lengthy piece summarising the discussions and recommendations from their 2008 conference that is quite interesting and informative: http://www.dsm5.org/research/pages/autismandotherpervasivedevelopmentaldisordersconference%28february3-5,2008%29.aspx

      (Though I do realise that when you say you “honestly don’t know why they didn’t just change the category name from PDD to ASD and leave the rest of it alone”, that there’s a good chance you don’t mean you don’t know their reasons, rather that you think their reasons are inadequate.)

      I do think most of their changes are well explained and reasoned, which is why I’ll be looking into doing future posts about precisely what those reasons are. But I also understand many of the concerns and I think at the very least such concerns need to be addressed with compassion and careful consideration (which the DSM-5 Task Force does seem to be doing on the whole).

      Thanks for your comment :)

  3. NorCal_ASM says:

    I wish I could print out everything on this page! It was a LONG road in determining my son’s Autism. He was forever PDD-NOS on his IEPs, when he was 11 yrs old the definitive diagnosis. His pediatrician and I knew since he was about 3 yrs old there was “something,” then the pre-school teacher knew there was “something,” then the special education teacher knew there was “something.” Today I am glad to report, we have the right combination of supports in place and it wouldn’t be possible with out the definitive Autism diagnosis.
    The pessimist in me says that the Health Insurance Industries are really supporting this as a way to off-set the recent non-discrimination coverage for people with ASD.

    I plan to “bookmark” your blog and visit regularly. Sorry for the long post.

  4. Pingback: Anxiety about Changes to the DSM-V | Health Chatter

  5. Pingback: DSM 5 | aspergersandmeblog

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