"What's in a name? That which we call a rose
By any other name would smell as sweet."
Romeo and Juliet (II, ii, 1-2)
The Snowflake Syndrome – No Two are the Same
A controversial debate is raging in America over the the proposed reclassification of Asperger's Syndrome in Psychiatry's diagnostic manual.
The Diagnostic and Statistical Manual of Mental Disorders (DSM) lists and classifies mental and developmental conditions with clear diagnostic criteria. In 1994 Asperger's Syndrome was first recognised as a distinct disorder (albeit linked to autism). However, in the new 2012 version of the manual, it is proposed that Aspergers be grouped under one heading of 'Autism Spectrum Disorders'.
Opinion is divided on the proposal. We all recognise that some common system of classification for developmental and behavioural disorders is necessary for clinical work, for research purposes (to be sure we are talking about the same things) and finally, for individuals seeking validation of, and resources for, their problems. So any changes to the system we have become used to, and which serves our purposes, is likely to engender some pretty strong emotions. The anti-camp feel that it is akin to lumping all cancers together, as they each need their own assessment and treatment processes it is inefficient and meaningless to consider them together. They fear that Aspergers will be lost as a distinct identity in a spectrum and may end up trivialised. They argue that over recent years Aspergers is truly beginning to be understood and favourably viewed. Educational and care services are beginning to comprehend and address what measures they need to take to ensure each person reaches their potential. The fear is, that it is now headed for psychiatric obsolescence. Many children and adults with Aspergers are proud of their label and take comfort in it, feeling that it accurately reflects who they are and explains their differences.
Another concern for parents in the US is that a change of label could be used by insurers/government to wriggle out of providing resources and covering insurance claims. The categorisation of Aspergers as a distinct sub-group is also useful for research and for those with a responsibility for planning services.
The final objection is that mildly affected people may be loath to come forward for a diagnosis, for fear of being labeled autistic which, for some, has connotations of cognitive impairment and so they may be left undiagnosed and unsupported.
Those who advocate a change, argue that as Aspergers is on the autistic spectrum and essentially does not differ in any obvious way from mild autistic disorder, it may as well all be seen as the same diagnosis on a continuum. In addition, Aspergers is so variable in intensity, and the degree to which an individual is disabled by it, that it does not have a clear identity in the way people like to think. It is argued that meaningful educational and care provision cannot be made based on the label of Aspergers, for what suits one would distress another. It is better to place Aspergers on an autistic spectrum which allows for the huge variability in both the severity and range of traits. Doctors also feel the new manual has a better ability to diagnose other problems often associated with autistic spectrum disorders such as OCD, ADHD etc. The older manual was not set up for easy multiple diagnoses. It is also recognised by this group that the gene research suggests that there are many different autistic disorders so until we have an accurate test it is better to see them as a continuum as there are no clear scientific boundaries between sub-groups.
I think that many parents believe that a diagnosis of Aspergers is a scientific fact, fixed in stone. However, the uncomfortable reality is, that it is actually based on a list of traits, symptoms, behaviours drawn up, fought over and ultimately agreed upon by a number of psychiatrists. The factors deemed significant can change, and also the weighting given to them. In the distant future a diagnosis will be based far more on such things as genetic profiles or brain imaging.
The DSM must be viewed in context, as the classification system was originally created for specific disease classification and was not actually designed for developmental disorders. Autism has many different elements, manifesting in different ways.
Wing first identified that the picture portrayed by Hans Asperger of a particular group of children bore a striking resemblance to those with classic Kanner type autism. She came up with a label of Asperger's Syndrome, recognising it as part of the autistic spectrum but distinct in many ways. This separate and yet inclusive label has been useful in that many individuals take great comfort from such a label, a label that so well describes their sense of being different and Wing recognizes the emotional benefits but on a clinical level, the 'matriarch' of the label 'Aspergers' is not at all precious about keeping her label, unless it serves a clinical advantage. Maybe it has done its job of opening peoples' minds to a wider concept of autism. On the other hand labels have a tendency to take on their own meanings based on the knowledge, ignorance and pre-conceptions of those around. One thing is for sure, the description of Aspergers as a mild form of Autism is not what Wing meant by it and although such a view is true for many, for others it trivialises the severity of problems that some individuals face. So perhaps a change is not all bad, especially if safeguards can be put into place to ensure that those with a duty to aid this group cannot wriggle out of their responsibilities.
Scientific research into autism is in it infancy and in the future we will no doubt benefit from diagnoses based on measurable features such as genes and brain imaging. It is perhaps inevitable that as we discover more about autism, the goal posts will change - it is not yet fixed in stone.
Anna Van Der Post 2009
Wing, L , 'Journal of autism and Developmental Disorders' Vol. 35, No. 2, April 2005
Klin, A, Volkmar, F and Sparrow, S (2000) Asperger Syndrome (pp 418-431), New York, Guilford Press
Volkmar, F, Kiln, A and Paul, R 'Handbook of autism and Developmental Disorders' (pp 3 - 27) New York: Wiley
Tammet, D ( November 2009) 'A Powerful Identity, a Vanishing Diagnosis', New York Times
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