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:
- “DSM pushes forward in decision to change Aspergers classification” (Examiner.com, Feb 14 2010)
- “DO NOT remove Aspergers from ASD in DSM-5” (petition (now closed) that includes an explanation of concerns)
- “Aspergers officially placed inside autism spectrum” (npr, Feb 10, 2010)
- “Note to Angry Aspies: You already have autism” (Autism Jabberwocky, Feb 15, 2010)
- “Revised DSM criteria for autism raise questions” (Opinion piece on Washingtontimes. com, Jan 29 2011. Discusses concerns over the changes to Aspergers, PDD-NOS, and briefly the severity scale.)
- “Autism and intellectual disability in the DSM-5: My submission to the DSM-5 Neurodevelopmental Disorders Work Group” (Facing Autism in New Brunswick, July 17, 2011)
- “Proposed revisions to autism diagnosis in DSM-V: My response” (SRMM, Jan 28 2011, brings up issues with new severity scale, amongst other concerns)
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…“