I don't think anyone's mourning the disappearance of
PDD-NOS, but why do they want to get rid of Aspergers?
Because there might be no such thing.
Let's start by taking a look at where the term Aspergers came from.
The early days
In 1943 a psychiatrist called Leo Kanner published a paper describing the behaviours of a small group of kids who were aloof, used odd speech patterns, had trouble with nonverbal communication and liked repetitive routines. He called this pattern of behaviours 'infantile autism' - infantile because it started early in life and autism because it caused the kids to withdraw (which was the initial meaning of the word).
A year later a German paediatrician called Hans Asperger also published a study - his small group of kids showed incredibly similar behaviours, but he believed that they were more indicative of a personality disorder than the type of psychosis described by Kanner. So Asperger concluded that it was something different to infantile autism, and called it 'autistic psychopathy' (at the time psychopathy was used to refer to personality disorders).
Asperger's work was published in German and so was largely ignored by English-speaking academics of the time. It stayed that way pretty much until the early 80's, when autism was becoming more prevalent and evidence was mounting that maybe there was more to these behaviours than Kanner had first described. Realising that we needed more flexible ways of looking at autistic behaviours, people started tossing around the idea of a spectrum.
Asperger Syndrome is born
Around this time a researcher called Lorna Wing wrote a paper about Asperger's descriptions. She noted that over the years the term psychopathy had come to be associated with severe mental illness, and maybe wasn't such an appropriate way to talk about autism anymore. So she suggested a more 'neutral term'... Asperger Syndrome.
Diagnosticians and parents eagerly embraced this new term, which was easier and nicer to talk about than the negative connotations that had been associated with the word autism up to that point. This was despite any evidence that the condition was actually different to autism - in fact Lorna Wing herself admitted that they didn't yet know whether it was, but in the meantime it'd be a nice way for people to get onboard with the needs of people who didn't seem severe enough to be called autistic:
In the light of this finding, is there any justification for identifying Asperger syndrome as a separate entity? Until the aetiologies of such conditions are known, the term is helpful when explaining the problems of children and adults who have autistic features, but who talk grammatically and who are not socially aloof. Such people are perplexing to parents, teachers and work supervisors, who often cannot believe in a diagnosis of autism, which they equate with muteness and total social withdrawal. The use of a diagnostic term and reference to Asperger's clinical descriptions help to convince the people concerned that there is a real problem involving subtle, but important, intellectual impairments, and needing careful management and education.
- Lorna Wing, Asperger Syndrome: A Clinical Account.
The rise in popularity
The term Aspergers quickly spread and started to assume a diagnostic validity that it had actually never earned. This was cemented by the inclusion of separate criteria in DSM-IV, which effectively made it possible to differentially diagnose the two disorders on the basis of whether there was a language delay - despite anyone actually proving this to be the case.
So we had a major problem - everyone was using Asperger Syndrome to distinguish from autism, but there was no clear evidence of any differences between the two or what they might be. Despite a lot of time and money being spent on answering that question, we still don't know and here's why...
The problem with Aspergers as a diagnosis
Trying to define Aspergers is like a dog chasing its own tail. In order to empirically determine whether or how Aspergers is distinct from autism, you need some criteria to separate study participants into groups... which is the point of the study in the first place. If we knew how to split people into different groups, we'd already have the answer to how those groups were different.
So why does the idea of Aspergers as a separate diagnosis continue to be so popular? Well it probably goes back to that original idea that it's easier for people to accept than Autism with a capital A. If that's so, then instead of expending so much energy to prove that Aspergers exists we should be trying to make the word autism less scary - to increase the acceptance of it as a neurological difference which can mean many things, with a range of outcomes.
Some may argue that we need the term Aspergers to help guide treatment choices or access to support services, since it's usually used as a shorthand for 'high functioning' or ‘less impaired’. But again there just isn't the evidence for this, and we run the risk of under providing for these people by assuming their needs are less.
And then you have the interesting conundrum that Aspergers is now a household word. Through common use it has assumed an importance and meaning which is quite different from its origins, and that can be hard to unpick. There are many people who identify themselves as being 'an Aspie' by choice, who presumably aren't going to stop doing so just because of the publication of DSM-V.
The bottom line:
Autism is a disorder that shows up as a wide range of abilities, deficits, behaviours and sensitivities. Kanner and Asperger each plucked a small group of kids from different spots within that spectrum and, based on their personal viewpoints, coined different terminology for what they were seeing.
Seventy years later - SEVENTY, people! - and there's still a lot we don't know about autism.
But I would hope that the one thing we do know is that it's not a dirty word.
If we all agree that autism is a spectrum, why isn't the word 'autistic' good enough? Why do we continue to try and find discrete points that we can use to categorise people? High vs low functioning, Aspergers vs classic autism, the good kind vs bad kind... surely this is the antithesis of accepting individual differences in abilities and need.
You can be autistic with or without intellectual delay. You can be autistic with or without language delay. You can start out with a significant language impairment and end up with none. It is a spectrum in every sense - across people and within the same person across time.
I hope that by 2012 we're at a point where we can accept autism as a true spectrum of individual needs and abilities... and that nobody needs to feel like we need a kinder, gentler way of saying 'I am autistic'.
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