Concerns about the up-coming changes to the autism criteria in DSM-5, have now seeped their way into the wider autism community, and indeed into the broader public consciousness.
The most popular critiques were originally directed at the loss of existing divisons within the autism spectrum; most especially of the separate category of “Aspergers” (to be folded into autism more generally in the DSM-5). More recently, the focus has turned to the (supposedly high) number of people who may lose an autism diagnosis altogether under the new criteria, and in turn concern over consequent loss of access to government-paid-therapies, special schools, and insurance cover. (Those numbers are highly debatable and hotly contested though, see for example this blogger’s post looking at the recent news stories and issues, and this press release from the APA (pdf).)
I’ve written a few posts already (which I will provide links to where relevant in this post too), looking at and musing over the changes to the criteria. I’m not alarmed by the changes on the whole, in fact I think they’re important and much-needed. So in the face of the recent (and rather alarmist) reactions to the changes, I’ve decided to compile some of my already covered points about why the DSM-5 might actually be awesome, and add in some new ones too. I don’t expect whole-hearted agreement on their goodness, but I think it is important to introduce and consider these points in the face of the current outcry against the changes.
(1) The changes should make it easier to accurately distinguish between giftedness and (what is currently known as) Aspergers. Currently there is some understandable confusion about the line between the two, and the relationship between the two, which has important implications for treatment and the understanding of autism. See my previous post for more detail about how the DSM-IV creates this confusion, and how the DSM-5 may clarify the issue.
(2) The DSM-5 shifts Retts off the autism spectrum (and out of the DSM altogether), and suggests including reference to the cause of autism where known (for example, if it is caused by Fragile X). In both regards, this adds some much needed clarity to the relationship between various conditions and autism. See my previous post expanding on this point: “Genetic origins of Autism; when is autism, not autism? Fragile X and Rett Syndrome.”
(3) Educational services on offer for those with a PDD-NOS or Aspergers diagnosis, are often lesser than those on offer for someone with a classic autism diagnosis, despite that the challenges faced by those with PDD-NOS and Aspergers can be just as challenging as those with classic autism. Bringing all “types” of autism under the same head, would make it harder to continue to give those with Aspergers and PDD-NOS fewer services merely because of that different diagnosis category. (See further: “Understanding the DSM-5 Autism Criteria“)
(4) There is evidently much inconsistency in the way that Aspergers, PDD-NOS and autism are currently diagnosed, across different practices and by different clinicians (see, for example, A Multisite Study of the Clinical Diagnosis of Different Autism Spectrum Disorders). The new criteria is aimed at providing that currently missing clarity and consistency, which would in turn make for more consistent and accurate research findings about autism. (For more detail, see the DSM-5 rationale for removing Aspergers.)
(5) The DSM-5 introduces an express severity scale, which should help clarify the currently much argued about and misused notions of “high functioning” and “low functioning” autism. It could become a much more consistently used means by which to acknowledge the different ways in which autism impacts on lives, and in turn tailor services to how much autism is negatively impacting on one’s life, rather than more simplistically to whether they have PDD-NOS (for example) rather than autism. (This ties back into point (3) above.)
(6) The express introduction of reference to “unusual sensory behaviours“. These sensory issues are a significant part of the challenges faced by autistic people; it arguably makes the diagnosis more accurate and complete by having them present as one of the options under criteria B, and it’s important to have them directly referenced within the criteria for the understanding of the disorder and provision of services.
(7) The drastic drop in ASD diagnosis variations from DSM-IV (2027+) to the proposed DSM-5 (just 11), will arguably/conceivably make is easier for researchers to study and draw meaningful conclusions about autism, and for service providers to create and tailor services to those with a diagnosis.
This is obviously not an exhaustive list of benefits – whether actual or expected – of changes to the DSM criteria for autism.
Of course the DSM-5 faces many legitimate challenges from those concerned about the changes to the autism criteria; I am aware of those concerns, and have written previous posts addressing some of them (see for example, “Intent vs Effect re the Exclusion of General Developmental Delay under ASD in the DSM-5” and “The 4 Main DSM-5 Autism Controversies“). I think that it is important though to consider why the changes to the autism criteria are being introduced in the first place, and whether the benefit of those changes outweigh the negatives (I find it difficult to imagine a change to the criteria that would ever make everyone happy when it comes to autism).
On balance, I am of the opinion that these changes are largely beneficial and heading in the right direction, though some of the chosen language in the DSM-5 and the communication of the changes to the general public, have left something to be desired.
The criteria have not been finalised yet; if you’re interested in the DSM-5 process, timeframe, and opportunities to comment on the changes, have a good wander around the official site (particularly see the links under “About DSM-5“).