It's a funny old world.
The Diagnostic and Statistical Manual (DSM) produced by the American Psychiatric Association (APS) is one of two main international sets of diagnostic criteria for autism spectrum disorders: the other being the International Classification of Diseases (ICD), produced by the World Health Organization.
As many of you will know the latest version of the manual - DSM-5 - which was published in 2013, caused great concern by omitting the term Asperger's Syndrome which now - along with some other terms - comes under the umbrella of 'autistic spectrum disorders'.
So how did such a change happen? Certainly we know it was years in the planning. Thus over the course of 5 years around 30 people worked on the Neurodevelopmental Disorders Workgroup - as members and advisers - holding teleconferences, in-person meetings, web conferences and more; putting in some 2,500 hours of work.
They were concerned about several points included in the previous version of the DSM. In relation to Asperger's Syndrome, those concerns arose because they believed that:
* the criteria did not match Asperger's original cases (although they thought his cases did meet the criteria for autism).
* 'high functioning' autism was the same Asperger's syndrome.
* there was a real bias at times, with rich, white males receiving an Asperger diagnosis, in contrast to poorer, non-white children who were often classed as having a Pervasive Developmental Disorder instead.
Over those five years their ideas were vetted through public comments, presentations at scientific and advocacy meetings and reviews by leading experts and advocacy group members. They based their decisions on expert consensus (supported by reviews of the literature), secondary data analyzes and even clinical evaluations. But their conclusions were their own.
Whether those conclusions are valid or not is a moot point but it is unfortunate that the Workgroup seemingly ignored representations from important organizations and authorities like the late Dr Lorna Wing who, alongside Dr Judith Gould, Professor Christopher Gillberg and many other experts, believed that the term should remain in the criteria. Nor did they take into account the most important factor of all: the feelings of many of the people involved in various Asperger's groups - many of whom consider Asperger's to be part of their identity.
To confuse matters further, a study by Dr Frank Duffy, a neurologist at Boston Children’s Hospital and his colleagues was published just a couple of months after the DSM had changed. It used brain-scans to shine a new light on the possible differences between ASD and Asperger's Syndrome.
The previous DSM indicated that people with Asperger’s syndrome shared the difficulties with social interaction and unusual behaviors of their autistic peers, but differed in that their language and cognitive development was much closer to those of typically-developing children.
The findings from Dr Duffy's study confirmed that those differences did exist. Thus the scans showed that while both groups had weaker connections than their typically-developing peers in a region of the left hemisphere that is involved in language, the connections between several regions in the left hemisphere were actually stronger in children with Asperger's than in either children with autism or typically-developing children.
So autism and Asperger's syndrome are similar in some respects and different in others: with the stronger connectivity among the left hemisphere brain areas accounting for the differences between the two. A finding which might also imply that the two are different biologically - although that is an area for ongoing research.
A year on from the changes it is said that all autism groups now support the criteria, although a couple of Asperger's groups continue to object. However, regardless of the 'public relations spin' the change is still proving controversial.
Thus some experts continue to worry (justifiably) that people formerly diagnosed with Asperger's syndrome will not meet the diagnostic criteria for ASD. Many also believe that the new diagnosis of Social Communication Disorder which limits effective communication, social relationships, academic achievement or occupational performance, will effectively exclude people with Asperger's. That is mainly because, while the criteria for Social Communication Disorder include difficulties with verbal and non-verbal communication, in learning and using spoken and written language and inappropriate responses in conversation, it omits any mention of restricted, repetitive patterns of behavior, interests or activities that are found amongst many people with Asperger's Syndrome.
The change in criteria also raised concerns among many families who felt that their children had unique needs that wouldn't be met in classroom programs designed for people with autism: a concern echoed by Professor Duffy who believes it is essential to separate the two groups, because they need different types of education and opportunity.
So did the American Psychiatric Association 'jump the gun' and publish their ideas too soon? Only time - and more research into this area - will tell - although it will be interesting to see if Dr Duffy's findings influence the current review of the ICD diagnostic criteria.
However, regardless of what the future holds in terms of the ICD, you only need to look in a bookshop or on the internet to find that the term Asperger's Syndrome abounds - as do the numerous groups of people bonded together by that common diagnosis.
And therein lies a very real problem for the 'experts.' They can certainly take the term out of the diagnostic manuals. But they can't expunge the name from the numerous books, articles and research papers that have already been written. Nor will they get anyone who considers that Asperger's Syndrome as part of their identity to willingly 'think of themselves' in a different way.
Somehow I rather doubt that the diagnosis formerly known as Asperger's syndrome will ever fade away. Do you?
Stella Waterhouse is a writer and therapist who has worked children and adults with a variety of learning differences since the late 1960’s.
In the mid 1980s Stella worked at a residential home for approximately 40 adults with Autistic Spectrum Disorders (ASD), where she became Deputy Principal.
In the 1990s Stella set out to write a short book on the role of anxiety in autism., which at that time received little attention. Her research led her to investigate the causes of ASD as well as role of sensory disorders - particularly those of an auditory or visual nature.
The original ‘short’ book evolved into a much larger project and has so far spawned two full length books including A Positive Approach to Autism - Jessica Kingsley Publishers, plus a series of short books for parents and teachers all of which are currently available as e-books.
Stella is currently completing her new series The Autism Code. For more information on Stella and her products please visit www.positiveapproachestoasd.com