Publication of the fifth edition of Diagnostic and Statistical Manual of Mental Disorders (DSM-V) is still three years away in May 2013 – but the proposed draft revisions were released for public comment on Friday. It has hardly been a well-kept secret that the 600-or-so reviewers from around the globe would propose that Asperger’s syndrome be eliminated as a separate disorder.
Instead, it is proposed that Asperger’s will be placed into a general category known as Autism Spectrum Disorders. Clinicians will then rate the severity of clinical presentation of ASD as severe, moderate or mild – with the assumption that “the condition previously known as Asperger’s” will typically will typically present as “mild autism”.
Asperger’s syndrome was first listed separately in DSM-IV in 1994. It was then described as a mild form of autism involving social and physical awkwardness, sometimes but not always combined with verbal precocity and intense but limited learning interests.
On the face of it, this change could be dismissed as mere semantics – but of course the implications are far greater than a simple tweak in an academic categorization. It has not been surprising to see the avalanche of opinion on this proposed change in the few days since the release of the proposed revisions.
The comments seem to fall into five broad camps:
Many in the Asperger’s community who are advocating for preservation of the Asperger’s identity. There is a large degree of pride amongst adults with Asperger’s syndrome. And why not, as their company is rather esteemed - sharing traits with the likes of Albert Einstein, Isaac Newton, Benjamin Franklin, Leonardo da Vinci, Vincent van Gogh, Beethoven – and perhaps Bill Gates and Henry Ford. The opinion from these groups over the past few days seems rather vocal against an absorbtion of their Asperger’s identity into the wider autism group.
Those parents who recognise that a diagnosis of autism is more likely to result in funding and resources for their child. While some folk are advocating against the proposed changes, many parents recognize that formal inclusion of Asperger’s as an Autism Spectrum Disorder could lead to increased assistance for children with Asperger’s syndrome. Asperger’s syndrome is not recognized in the current DSM-IV-R as a form of autism.
Those professionals who agree that Asperger’s is indeed a subset of Autism Spectrum Disorders and that it logically belongs as part of that continuum. Presumably the majority of the 600 or so reviewers from around the world who have been working on revising the current DSM-IV-R fall into this camp.
Those who argue that the weight of existing convention shouldn’t be swept aside lightly. After all, there are mountains of books, literature and resources targeted to Asperger’s syndrome which serve parents, professionals, teachers and adults with Asperger’s very well indeed. Much of this may be made obsolete or less accessible by abolishing a separate DSM diagnosis for Asperger’s. Any shift in status could cause distress and confusion for those who have received an Asperger’s diagnosis – and negatively impact on their ability to obtain services.
Those who argue that Asperger’s syndrome and autism may well be biologically different conditions. This camp would argue that the scientific world has not had enough time to test for these differences and that a removal of Asperger’s syndrome as a separate diagnosable condition would discourage research which would help gain a clear understanding of the potential differences and similarities. Professor Simon Baron-Cohen (Director of the Autism Research Centre, University of Cambridge, United Kingdom) has made comments which appear to include him in this camp.
The closing date for comments on the proposed changes is 20 May 2010. It will be interesting to see which of the above bodies of thought prevail, and whether these proposed changes to the Asperger’s diagnosis survive to the final version of the DSM-V due for release in May 2013. If you would like to submit a formal comment to the DSM-V Workgroups, the official DSM-V development site is at http://www.dsm5.org
Here’s hoping that the final decision is rational and evidence-based rather than a response to lobbying or political pressure. Feel free to leave your own comments right here.