Fictional characters help make Asperger’s cooler
How ‘Big Bang Theory’ and ‘Girl with the Dragon Tattoo’ stars help to make it a more preferable label than autism
Dr Stuart Neilson: ‘The book is also for people who might be wondering if they fit on the spectrum but are unsure.’ Photograph: Bryan O’Brien
The removal of Asperger’s syndrome from the most recent edition of DSM (Diagnostic and Statistical Manual of Mental Disorders) is a source of concern for people with the condition, says Dr Stuart Neilson, one of the authors of a recently published book, Living with Asperger Syndrome & Autism in Ireland . However, Neilson, a 50-year-old mathematician who lectures on the Autism Spectrum certificate course as part of disability studies at UCC and was diagnosed with Asperger’s syndrome in 2009, is not concerned about the American Psychiatric Association’s subsuming of Asperger’s syndrome to the ASD (Autism Spectrum Disorder) label.
Asperger’s syndrome is one of the autism spectrum disorders that impacts on how the brain processes information. Neilson, who welcomes the Autism Bill that is progressing through the Dáil, says “some people are very attached to their label.
They prefer being described as having Asperger’s syndrome than autism. There’s probably a stigma attached to having autism that isn’t there with Asperger’s syndrome.
There are all these fictional characters such as The Girl with the Dragon Tattoo and Sheldon from The Big Bang Theory who are said to have Asperger’s syndrome.
“There’s a kind of trendiness associated with [the condition] at the moment.” (Asperger’s was recognised only in 1994.)
A special case of disability?
Neilson, who was relieved to be given a diagnosis that explained his sensory and social difficulties, says there’s an argument among geneticists and neurologists as to whether Asperger’s syndrome is a special case of disability.
A spokesperson from the Department of Health says the decision in May 2013 to remove Asperger’s syndrome from the DSM classification system was based on research “that shows a major lack of reliability between clinicians in terms of diagnosing Asperger’s syndrome.
However, many people with Asperger’s syndrome object strongly to the removal of this label as they do not wish to be categorised as having ASD or autism. They are also concerned that they may now become ineligible for medical or social services.”
These concerns “are unfounded”, says the spokesperson. “Those already diagnosed will not lose their diagnosis or be re-assessed to fit into the new DSM-V unless clinically necessary, in line with developmental changes.
Debates about diagnostic labels should not impede the proper assessment of need and the delivery of services to children. Any changes in diagnostic labelling should be monitored to see that it does not produce any unintended effects.”