Friday, 25 February 2011

DSM V on autism or is that autism spectrum disorder?

It has been on the horizon for quite a while.

Last month the American Psychiatric Association (APA) detailed the proposed revisions to the Diagnostic & Statistical Manual (DSM) - DSM V. Details of the various documents are available here. There has already been quite a lot of chatter about this in the professional, peer-reviewed and lay domains. The main changes being put forward are:

  1. Revision of the name to 'Autism Spectrum Disorder', 
  2. Reducing the triad of impairments to a "pair" of impairments, merging current social and communication areas into a 'social/comunication' super-domain, 
  3. Inclusion of a sensory aspect to the 'restricted repetitive patterns' domain, 
  4. Replacing the 3 year cut-off period with presentation instead during 'early childhood', 
  5. Detailing levels of severity based on the amount of support required, and 
  6. Use of a single diagnostic category which does not include Asperger syndrome as an exclusive diagnosis.

Phew! Sit down... have a drink... and I will carry on. One has to remember that these are the clinical description guidelines for autism (autism spectrum disorder excuse me!) and hence form the criteria for diagnosis - that is all. Like past DSM revisions they make no reference to any other aspect of autism - medical, political or personal, nor do they detail any 'life course' of autism. All they specify is what a physician or team use to say 'autism or not-autism'.

The name change to autism spectrum disorder is perhaps a more welcome addition to the DSM. Thanks principally to the work of Lorna Wing and her book 'the autistic spectrum' first published in 1996, this terms has seen regular usage in the UK expanding outwards to other countries. It signifies two important things: (a) that autism is a heterogeneous spectrum in terms of presentation of symptoms, and (b) at what is often called the higher-functioning end of the spectrum, the condition overlaps with what is often called neurotypicality. I suppose the only issue here is the use of the word 'disorder' over 'condition'; noting that many organisations nowadays use one (e.g. the National Autistic Society) or the other (e.g. NICE).

Merging the current social and communication sub-domains into one is slightly more contentious. Far be it from me to say that this point has already been approved, but for a few years now there have been clues to this merger happening. The biggest clue came from one of the gold standard instruments used to assess autism, the Autism Diagnostic Observation Schedule (ADOS). Briefly, ADOS is a standardised tool that assesses the responses (and non-responses) of a child/adult to certain tasks and cues which vary according to age and degree of language the person has. The scores derived from the schedule are summed and put through an algorithm which determines whether autism or autism spectrum cut-off points are reached. The original algorithm used has received quite a lot of study. In recent times revised algorithms have however appeared; the first was by Gotham and colleagues in 2007, where separate social and communication domains were merged into one super-domain labelled 'social affect'. Coincidence?

The inclusion of a sensory aspect to autism (autism spectrum disorders!) is another welcome addition. Many people with autism report on various hypo- and hyper-sensitivities to all kinds of things (noise, light, touch, etc). I remember reading some of the books of Donna Williams where these are described; more recently also discussed in some detail by Olga Bogdashina (I am not plugging any of their books by the way!).
Replacing the cut-off periods is a slightly odd one so I am going to skirt over that issue.

A measure of 'severity' is probably going to be a mixed bag. On the one hand it will provide some information both to the person with autism / their parents where on the spectrum the diagnosis has been graded. I assume this means that where support is required (in one or both of the domains at the same level or variably), there will be clear instructions to education and social services to provide for the needs of that individual. From a research perspective (ah yes) it also gives the possibility (just a possibility) to examine/assess the natural progression of the condition, either as a result of maturation or possibly intervention based on the severity scale provided. The one downside that I could envisage is how to ensure that severity is accurately portrayed at diagnosis. What happens if it is queried after a diagnosis is received?

Finally, the use of a single diagnostic category. Mmm, this is where I could get myself in some hot water. The rise of 'Asperger syndrome' as a specific diagnostic entity is a notable one over the past few years. For many, the diagnosis is a valued one; as is evidenced by the number of blogs and websites dedicated to 'Aspie pride' (of which there are too many to list here). The questions are these: how would an individual (most probably an adult) who has a diagnosis of Asperger syndrome now react if their diagnosis 'disappears' from the diagnostic literature? How would an individual with Asperger syndrome feel about being 'reclassified' as having an autism spectrum disorder according to the new criteria?

These are not easy questions to answer. Remodelling autism in such a significant manner takes us into unknown territory. Will the changes increase or decrease the numbers of cases being diagnosed? If DSM takes the lead, will the alternative WHO diagnostic schedule (ICD) be forced to follow?

I am sure that many of these issues will come further to the front of discussions as the time approaches for transition and we eventually say thank you and good night to DSM-IV.