Published on 12, July, 2020
Asperger United was renamed The Spectrum by the NAS as a result of the findings about the life and work of Hans Asperger by Herwig Czech earlier in 2018.
https://www.autism.org.uk/get-involved/media-centre/news/2018-04-19-study-on-hans-asperger.aspx
www.autism.org.uk/.../the-spectrum.aspx
Is this an indication that the NAS is (quietly?) phasing out Asperger from their website and publications?
The services that the NAS has provided for people with AS have been the point of much contention over the years. This has included criticism that the NAS focuses the majority of its efforts onto people at the more severe end of the autism spectrum or those who require residential care services whereas people with AS only get the crumbs. Therefore the NAS could take advantage of the findings of Herwig Czech as a backdoor way to abandon supporting people with AS and effectively turn the clock back to the 1980s when people with (then undiagnosed) AS would almost always fail to meet the criteria for autism.
Some people argue that AS should be phased out anyway because it is no longer included in DSM-5 but DSM-5 is American and it has been rather cynically referred to as a catalogue of billing codes for insurance companies rather than a list of medical conditions.
The DSM-5 states, “Individuals with a well-established DSM-IV diagnoses of autistic disorder, Asperger’s disorder or pervasive developmental disorder not otherwise specified should be given the diagnosis of autism spectrum disorder.”So, according to this, the changes from AS to ASD should not have an effect on getting support.
Can we ßłøøðÿ well forget about DSM-5 for the purpose of this discussion. DSM is American. ICD is what is officially used in Britain - and the free world.
qwerty said:However, that being said, I personally would prefer a reorganisation (e.g., have AS listed as a subtype of ASD, or have it listed as an alternative name), rather than elimination. Because AS has been in existence for so long, and it took a long time for the public to gain awareness, changing the name would be confusing for people. Also, there are groups of people who have identified with AS, so taking the name away would be taking away an identity.
At a meeting at my local AS support group (before the findings of Herwig Czech were published) it was unanimously agreed that 6A02.0 Autism spectrum disorder without disorder of intellectual development and with mild or no impairment of functional language in ICD-11 is AS in all but name. Therefore, AS technically still exists in ICD-11, unlike in DSM-5. There was even talk about incorporating 6A02.0 into the logo of the AS support group, and shortly afterwards some prototype designs were created, to show the world that we have adopted ICD-11 before almost anybody else has.
There doesn't appear to be much evidence at the moment that the NAS intends to make much use of 6A02.0 in any of its publications or has geared up for ICD-11. Neither has the NAS (knowingly) consulted anybody on the choice of a popular or everyday name for 6A02.0 as Autism spectrum disorder without disorder of intellectual development and with mild or no impairment of functional language is a bit of a mouthful.
This further highlights the possibility that the NAS is subtly and quietly exiting the provision of services for people with AS and similar higher-functioning ASD, regardless of what it is actually called.
My viewpoints are similar to Graham's, and I think he has explained it very well, so I don't have much more to add. My point was mainly regarding whether the amount of support will change, and I don't think it will. I definitely don't agree with the reason NAS changed it's magazine name because of Hans Asperger because that's just hiding history, and NAS disregarded the opinions of those who have AS. If you want more support for this view, I am one, and I'm quite sure there are lots of people who think similarly about the unjustified changed of name to Aspergers United. I have commented months ago that I felt they were biased and disregarded the opinions of those who have AS: https://community.autism.org.uk/f/adults-on-the-autistic-spectrum/13152/disgusted/79777#79777 But scientifically, reorganising these different diagnoses under a broader umbrella name makes sense, because in the US, UK, and the rest of the world, even before DSM-5, scientific papers often treat AS and HFA as the same group (the only difference is whether there was a delay in language acquisition).
I don't know why you are so worked up about diagnosis manuals, in the actual clinic, experienced psychologists in both the UK and US don't strictly follow the manuals word to word, but they serve more as a guideline. And what you are saying about DSM criteria being required to publish in American journals is not true (American journals accept ICD).
However, that being said, I personally would prefer a reorganisation (e.g., have AS listed as a subtype of ASD, or have it listed as an alternative name), rather than elimination. Because AS has been in existence for so long, and it took a long time for the public to gain awareness, changing the name would be confusing for people. Also, there are groups of people who have identified with AS, so taking the name away would be taking away an identity.